Confessions of a Crohn's Patient

Life update

2009-09-29T06:32:00.000-07:00

It's been a while since any of us have posted anything here - would really like to get these blog posts going again and get some new people on here sharing their life stories and their battles / successes with Crohn's. If you're interested - email me.

My life over the summer has been pretty crazy. For those of you who keep up with me, you know I'm pretty OCD with my running and I this year I started competing in triathlons. Got 2 triathlons under my belt & was training pretty steady for running a full marathon this fall... Then the wheels fell off...

Not literally off my bike... but I ended up with a stress fracture in my left shin. What does than mean to a runner - NO RUNNING for 12 weeks!! So I have not run since the first of July, until today. The doctor has now cleared me to run and I was able to get out and run 1 mile today. Thank Heaven for the small things in life.

Have to wonder in the back of my mind if the stress fracture might somehow be tied to Crohn's and the lack of nutrition that our bodies get and keep inside. I was not training hard and was not increasing my mileage severely - I guess anything could happen and cause a stress fracture, but have to wonder what role Crohn's played. Probably will never get the true answer this side of Heaven.

Still taking Humira on a regular basis - 1 shot every two weeks. I take Pentasa, but have the biggest struggle trying to remember to take it 4 times a day. When I take it I can tell that I feel better, but dangit - why can't they just make it one pill a day. We Crohn's patients do try to have a life - & trying to fit those pills every 4 hours into a schedule is tough. Should be that tough, but it is...

Hope you guys / gals are doing ok out there & we'll chat again soon.

Why I Run

2009-06-16T07:11:00.000-07:00

I often get asked why I run? Why would I put my body through the training to be able to do triahlons and marathons and ultimately IronMan. Why would anyone put themselves though this? Why would you give the most precious commodity the we all have in our lives - time. Why would you want to give when Crohn's, the disease racking your body every day, only wants to take.

Put simply I run because I can. I say that not out of any type of arrogance but out of the knowledge that there was a time in my life that I was bedridden and simply struggled with the basics of life - and the unfortunate knowledge that I may one day return to that state. So here I am, Carpe Diem & running because, and while, I can.

Those of you who know me, know that I do not wear my Crohn's on my sleeve. I know that it influences my life and my daily decisions, but I refuse to allow it to define who I am. I am not a Crohn's patient who is able to do all of these things - I am a man who does all of these things and manages a medical aspect of his life. It is also fun to talk to people who we have known since we moved to Dacula (3 years ago), who have had some involvement in our lives and then find out "oh by the way, you know I have Crohn's, right?" It just doesn't come up and I refuse to be known as "that guy with Crohn's" - wow, I'm rambling.

But there are times when God opens up the Crohn's door for us to be a support to family and friends who are potentially struggling with this horrible disease. One of those doors has been open recently with some new friends in our Sunday School class.

Their son has been a pretty sick little boy and the docs just can't seem to get a handle on what it is. Any of you with Crohn's or Colitis understand this process. Test after test after test. His next test is tomorrow morning at 6am - the dreaded scopes (need I say more). Please be in prayer for this family and pray that the doctors can find what is going on. Only then can treatment truly begin. The unknown is the hardest part, but there is a possibility that this is Crohn's or Colitis.

I don't know if any of you will be willing to take time to do this tomorrow morning - but I'm going ask. I have been running in the morning and tomorrow, am scheduled to run 4 miles. My commitment is to run these 4 miles in honor of Chase, because I know that tomorrow morning at 6am, he can not run. I feel strongly the need to run for those who can't. Tomorrow is my hill run day - so I will have 4 miles of peaks and valleys of one on one...Me & God time to pray for this little guy. Any of you willing to dedicate your morning run miles tomorrow to Chase and to pray for him while you run.

If you can't run early at his procedure time - then just run anytime during the day. His mom and dad need your prayers all day long, just as much as he does. Pray for their peace.

I pray that God will guide the hands of the doctors to find out what is wrong. I pray with all my heart it is not Crohn's or Colitis - I would wish this disease on my worst enemy. But if it is, Then I pray that God will provide the love and support that this young man and his family need... right now.

Why do I run.... I do it for those who can't.

Running the Race

2008-11-07T05:57:00.000-08:00

No updates from me in a while so I thought I would take a minute to share what is going on in my life & dealing with my Crohn's... This is cut from my personal blog, but I thought it might be relevant here today.

Wow... how time flies!!! Seems like no time ago I was just getting started back into running & here I am ready to head out to my first half marathon tomorrow in Chickamauga, GA. I know I am really bad about keeping these notes up to date, but I figured since the entire reason for starting this was to keep track of training progress to my running my first half marathon, I should at least update it today.

I started running again in September 2007 - with my motivation being to run with the Crohn's & Colitis Foundation Team at the ING Marathon in Miami last January. Well, with the best laid plans and intentions, I was not able to make that trip as life got in the way. But I found something in running, and that training, that I had forgotten about. There is a peace and clarity of thought for me when I run, that really doesn't come any other time. I think a lot of that is because I take my running time to get alone with God and just talking about... everything.

You have to keep in mind that up to this point in my life, I have not run in almost 18 years - since high school. Most of the reason I have not run is from fear of what running will do to my body because of my Crohn's. Fear of not finding a bathroom soon enough - fear of some adverse reaction to my medications while I run - fear of.....Crohn's. But as of late I have come to a realization that I refuse to live my life in fear and that even if all of these things do happen - I will not be a victim to Crohn's anymore.

So here's to the Battlefield half marathon... Ready to run. Pictures and commentary to follow after the race.

Petiton against NICE withdrawing Infliximab and Humira for maintenance

2008-10-09T08:21:00.000-07:00

Hi there guys and gals,

First of all, I'm really so sorry that I haven't been around for quite a while now. I've had a lot going on, but it's still not really an excuse to be so quiet :(

Just wondered, if any of you know about what NICE (National Institute of Clinical Excellence) in the UK is proposing to do? Well, don't know if you have heard of either Infliximab (Remicade) or Adalimumab (Humira), which are anti TNF drugs used in the treatment of Crohn's disease. Well, basically, they are considering withdrawing both these treatments for maintenance purposes, which could potentially be devastating to many Crohn's sufferers who are currently being treated with these medications to help keep their Crohn's under control (including me). For me, Infliximab has been my lifeline, and I truly do not know what I would do without it.

If you want to know a little more, there is some info on the NACC website (National Association for Crohn's and Colitis) found at http://nacc.org.uk Then click on the " NICE Anti TNF Therapy Guidance" box for more information.

I would be so grateful (and I'm sure so will many others) if you would take the time to sign this petition - please click on the link below. Unfortunately it is only open to UK residents or expats, but obviously there is strength in numbers, so the more people we can get to sign, the better chance we have. We have to collect 200 plus signatures before 15th October, so we don't have long. Thank you so much in advance for your support, it is hugely appreciated.

Ok, so here's the link:

http://petitions.number10.gov.uk/crohnsTNF/

Thanks again, and best wishes to all, Ruth xx

Crohn's Disease - Living with Crohn's Disease: Signs that You are a Chronie! (Ahh, Love Crohn's Disease Jokes)

2008-09-09T20:13:00.000-07:00

OMG!!! This had me in stitches. I definately could relate.
Thanks Scottie Roy.

Crohn's Disease - Living with Crohn's Disease: Signs that You are a Chronie! (Ahh, Love Crohn's Disease Jokes)

Wanted to share

2008-08-18T05:59:00.000-07:00

This is the update on my surgery. I don't feel like posting twice so I am just gonna link you to my other blog. Hope you all are great.
Two Steps forward...

Sussman at sea

2008-06-21T09:54:00.000-07:00

Special thanks to Joe who commented on a previous post for turning me on to what Ari Sussman is doing to raise funds for the Crohn's & Colitis Foundation of America.

Here's Joe's comment - "Three years ago a good friend died from post-op complications after his colostomy. He was 26 at the time, and as you can imagine it was a huge tragedy all of us in his life. Another friend is now sailing across the Atlantic, and using the opportunity to raise money for Crohn's and Colitis research (he has secured a $10,000 matching grant). Part of the inspiration for this campaign is the adventurous spirit of our friend Yossi, who passed. The campaign can be found here: https://www.thepoint.com/campaigns/sussman-at-sea. I hope this is something you find interesting and share with your community here at Confessions of a Crohn's Patient."

Click on the link and go check out where he's doing and where he's at now in his quest. Give if you can. This is a pretty cool way to raise awareness and money at the same time. Hopefully he'll get to his goal of $20K.

Out the window

2008-06-11T06:45:00.000-07:00

Going into this week I began to prepare myself and my body for a much loved Colonoscopy. I had determined that I would eat less Sunday, fast from food (except what I need to take my meds) and then do liquid on Tuesday. When Monday came I woke up extremely nauseated. So I decided to eat something a little more significant to see if that would help. I stayed that way most of the morning and finally it seemed to pass later that afternoon. At this point I was truely looking forward to my colonoscopy so we could see what was going on. Tuesday came and I didn't even feel like getting out of bed. Not only was I nuaseated but I was having severe stomach cramps. The thought of having to drink my wonderful gallon of "stuff" loomed like a black cloud. I was supposed to start drinking it all around 2pm. I decided to start a little early becuase I could already tell that it was going to be a battle.
I must say that I was surprised by the taste. It was definately tolerable. After about 3 rounds my stomach said NO MORE! I tried for round 4 with no luck. Everything I drank came right back up. I tried my darnedest to push through but I just could. TO make matters worse, I had seen no evidence that this wonderful drink was working. I called the doctor's office to see what I needed to do. They quickly decided that I needed to scrap my colonoscopy. They feared that I might have a virus and be dehydrated. I was a little disappointed but also very relieved.
Within a moment the nurse called me back to reschedule for a couple of weeks. She quickly said that they wanted to do a more updated type of colon cleanse next time. One that you have to drink less and tastes better.
Ok, so you can imagine what went through my mind.
Do Huh? You have got to be kidding me that there is another way to accomplish this that is easier. HELLO! WHY DIDN"T THEY GIVE ME THAT IN THE BEGINNING!

But I politely said," Ok sounds great."
So... colonoscopy out the window until the 25th when we try again.

Medication du jour - Imuran

2008-06-06T11:32:00.000-07:00

I take 1 - 50mg tablet of Imuran 1xday. It's not nearly as cumbersome as the Pentasa. Small pill about like taking an asprin. The fact I only have to take it once a day is very nice. I do have to go once a quarter for them to check my liver enzymes - just bloodwork, to make sure my body isn't doing something crazy on this medicine.

Here's some more details from GI Health

All About Imuran (azothioprine)
Many patients are not as well informed about prescription medications as they ought to be. We believe the more you know about your medications, the better. This article has been written to help you understand more about what Imuran is and the importance of taking it properly. If any of the information causes you special concern or if you want additional information about your medicine and its use, check with your doctor or pharmacist.

If any of the information in this article causes you special concern or if you want additional information about your medicine and its use, check with your doctor or pharmacist.

Remember to keep all prescription drugs out of reach and sight of children when not in use. Store Imuran in the original labeled container in a cool dry place. Protect from light. Always read the label before using.

What is Imuran?
Introduced in 1968, Imuran is a powerful drug that weakens the immune system. It is often used to prevent rejection of kidney transplants. It is also used to treat severe cases of rheumatoid arthritis, systemic lupus, polymyositis, Crohn's disease, ulcerative colitis, and other "autoimmune" disorders. Its use is usually confined to patients who have failed to respond adequately to simpler treatment.

The generic name of Imuran is azothioprine (ay za THYE oh preen). Each tablet contains 50 milligrams and is easily broken in half when dosage adjustments are needed. Imuran, itself, does not act against IBD. After being absorbed by the intestines, it is changed in the liver to a chemical called 6-mercaptopurine, or 6-MP. This form of the drug is also available by prescription and sold as Purinethol.

What Imuran is not.
Imuran is not the same as the prednisone. But, Imuran depresses the immune system as does prednisone. This usually allows your doctor to reduce your dose of prednisone resulting in less side effects.

Imuran is not habit-forming. It does not cause drowsiness and will not affect your driving or working. It does not cause sexual impotence. There are no restrictions on exposure to sunlight.

How does Imuran work?
Immunomodulating agents, or drugs that suppress the immune system, such as Imuran have become important tools in the long term treatment of inflammatory bowel diseases such as Crohn's disease and ulcerative colitis. Although the exact mechanism of how Imuran works is not known, it is felt that by inhibiting the immune system, this drug suppresses the "overactive" immune reaction that is responsible for such disorders as Crohn's disease and Ulcerative Colitis.

Taking Imuran properly
1. Imuran is best taken with food. Imuran can irritate the stomach lining and therefore should be taken with food which serves as a buffer and reduces the irritation. The tablets may be crushed if necessary. There are no food or beverage restrictions. Imuran can be taken with milk. It does not interact with alcohol or tobacco.

2. Take the dose as prescribed once daily. There is no fixed rule for the correct dose of Imuran. The average dose is one or two tablets daily, but each case is different. Your doctor will determine what initial dose is best for you depending on the activity of your disease, your age, weight, any other medical conditions you may have, and your response to treatment - do not alter the dose on your own. The goal, of course, is to control your illness with the lowest effective dose of Imuran possible. Your doctor will routinely reassess what dose is necessary for you. The tablets may be crushed if necessary. If two tablets are prescribed, they may be taken at the same time once daily.

3. If you forget a dose, take the normal dose of the medication as soon as you remember and resume your normal schedule the following morning. If you do not remember until the next day, skip the missed dose.

4. Do not expect immediate results. Imuran does not work right away. In fact, it may take more than 3 months to show a beneficial response. You can plan to be on this drug anywhere from 3 months to several years.

5. Keep all your appointments. Imuran is only given under close supervision because of the risk of serious adverse effects. Periodic blood tests are mandatory for the safe use of this drug. Report for examinations as directed.

6. Be sure all of your doctors know that you are taking this drug. This is a good general rule, but it is especially important for you to remember if you are away from your doctor and require major surgery or develop a severe infection. If you are to be on Imuran for a long period of time, carry a reminder with you on a Medic-Alert bracelet or in your wallet. (Medic-Alert Foundation can be contacted at their toll-free number 800-344-3226)

What are the side effects?
This is the main concern. When taken over a long period of time (months to years) Imuran can cause many side effects. But when Crohn's disease or ulcerative colitis become difficult to control with prednisone, the benefit of Imuran far outweighs the potential risks. For difficult to manage conditions, Imuran can be a miraculous medication. In general, the risk of side effects depends on the length of time you take Imuran and the amount you take.

These side effects can occur with short term use but fortunately are usually reversible as the dose of Imuran is decreased:
skin rash
loss of appetite
nausea, vomiting
diarrhea These side effects are more serious. They usually occur after long term usage.

Immediately report any of these symptoms to your doctor:
>Bone marrow depression
severe fatigue
weakness
fever
severe sore throat
abnormal bleeding or bruising
sores on lips and in mouth
>Liver damage
yellow eyes and skin
jaundice
dark-colored urine
>Drug-induced pneumonia
severe persistent cough
shortness of breath
Pancreatitis
severe stomach pain
nausea and vomiting

Other side effects not listed above may also occur in some patients. If you notice any other effects, check with your doctor, nurse, or pharmacist.

You can help limit side effects by taking the medication exactly as prescribed and reporting any problems to your doctor. Report promptly any indication of a developing infection - fever, chills, lip or mouth sores, etc.

What about cancer?
Some doctors feel that there may be a slightly increased risk of some cancers such as lymphoma or Hodgkins disease after long-term use of Imuran. But , a scientific study done at the University of Pennsylvania in 2001 studied 1467 patients with Ulcerative colitis or Crohn's Disease and found no increased risk of lymphoma in patients who took Imuran. However, there is still some controversy about this point - so you must be willing to accept this possible risk if you take Imuran. Again, this powerful drug is only used as a last resort in patients with severe inflammatory bowel disease who do not respond to conventional treatment. In general, it is felt that the benefits of Imuran in this difficult situation outweigh the risks.

Monitoring Imuran
Each patient is different and the optimum dose of Imuran varies from one individual to another. There is sometimes a narrow range between the most effective dose and a toxic dose. The doctor determines the best dose based on age, weight, response to treatment, and monitors symptoms and blood tests for side effects.

Technology is also now available that allows for more accurate dose adjustment. The metabolites of Imuran called 6-TG and 6-MMP can be directly measured in the blood. Higher 6-TG levels correlate with clinical response to Imuran but also the risk of bone marrow suppression. Higher 6-MMP levels correlates with liver toxicity. These special blood tests may be requested from Prometheus Laboratories to help the doctor determine the proper dose. Studies at the Cleveland Clinic have suggested that 6-TG levels greater than 260 are necessary for a clinical benefit and 6-MMP levels over 5700 have been associated with liver toxicity.

Precautions
Do not take Imuran if you are pregnant or plan to become pregnant in the near future. Birth defects have been reported in animals that received large doses of Imuran during pregnancy. This drug also has the potential for producing birth defects in human offspring. Use of this drug is not recommended during pregnancy. There is a possibility that birth defects may occur if either the mother or father is using Imuran at the time of conception. Use of birth control is recommended while taking this drug. Do not breast feed while on this drug.

Notify your doctor if you recently had chickenpox or shingles. Be sure to inform him if you are taking allopurinol (Zyloprim), Dilantin, Rifampin, or phenobarbital. These drugs may increase the blood levels of Imuran, which can lead to serious side effects. Tell your doctor if you have any kind of active infection, have a history of bone marrow disorders, severe liver or kidney disease, or are pregnant or plan to become pregnant in the near future. Be aware that Imuran can lessen the effects of the anticoagulant drug Coumadin.

Remember
Imuran is a very powerful drug with many helpful properties, but as with all potent medications, side effects may occur. You can best limit problems with this medication by taking it exactly as prescribed. If you have any questions or concerns, please discuss them with your doctor.

Medication du jour - Pentasa

2008-05-30T10:15:00.000-07:00

So I'll go first with the meds. I take 2-500mg capsules 4x a day. These are big blue pills (as opposed to the little blue pills) that are not for the faint at heart to take. My wife calls them horse pills. They are by far the largest medication that I have ever taken.

Here's the stuff from their website: www.pentasaus.com
What is PENTASA?
PENTASA is an anti-inflammatory drug containing mesalamine, which helps to reduce inflammation in the intestine. Specifically, PENTASA is approved for the induction of remission and for the treatment of mildly to moderately active ulcerative colitis.

PENTASA Features an Innovative Drug Delivery System
PENTASA delivers mesalamine to your small and large intestine in a special way. Here’s how it works:

Each PENTASA capsule has a gelatin-like coating. Once inside your stomach, the coating dissolves, releasing tiny semiporous spheres. These spheres help deliver the mesalamine to your small and large intestine. Water found inside your intestine flushes mesalamine out from the spheres. Once the mesalamine is released, the drug is free to help reduce the inflammation.

PENTASA 500-mg Capsules May Relieve Your Symptoms with Fewer Capsules
PENTASA helps to bring your symptoms under control. In a clinical study, PENTASA significantly reduced the severity of the most common signs and symptoms of ulcerative colitis (compared with a sugar pill), including:
Bleeding from the rectum
Stomach cramps
The urge to go to the bathroom
The number of trips to the toilet each day

PENTASA 500-mg capsules provide symptom control and relief with only 8 capsules a day. That’s half the number of capsules compared with the 250-mg formulation.

So that's a synopsis from their site. Go there if you want to read more. I did find it interesting to read that they have a Patient Assistance Program for free or low cost medication for low income families or those with no insurance.

Pros: Well, I do notice that I do not go to the bathroom as much as I did before I was taking it, which is always positive.
Cons: I can't for the life of me remember to take this medication every time I'm supposed to. Even with setting an alarm to help me remember, I still don't take it as prescribed. Maybe they'll read this and take a suggestion - get it down to taking just once a day. I would take all 8 of them in the morning, if it meant I didn't have to take them all day.

Hope that gives you some insight. Until next time...

Medication du jour

2008-05-30T10:00:00.000-07:00

Ok, so I thought we might do each other a faover and talk a little about the medications we are currently taken or maybe have taken in the past.

To our writers: If you write something about your medication, make sure to give us the pros and cons of the medications for you personally, not the legalease that you get in with the medications. Real life, real world stories of what these medications do for you personally. Also, if the medication has a website, make sure to include a link so we can go there and check out more info.

To our readers: We want your input. So please comment about the medications we write about. Tell us your stories. And as always - if you want to write a post, shoot me an email & we'll be glad to add you in.

Gall Bladder Disease and Crohn's

2008-05-27T15:41:00.000-07:00

I know a lot of people with Crohn's who when end up having Gall Bladder issues (myself and my sister included). So I thought I would do a little search and see what I could find about the subject and post it here.

Here is the link to where I found this:
http://www.netdoctor.co.uk/diseases/facts/gallbladderdisease.htm

Gallbladder Disease
Reviewed by Mr Robert Diggory, consultant general surgeon

What and where is the gall bladder?
The gall bladder is a small pear-shaped organ on the underside of the liver that is used to store bile. Bile is made in the liver and is stored in the gall bladder until it is needed to help the digestion of fat.

What is gallbladder disease?
Gallbladder disease is a common condition that affects mainly women, although men can suffer too. The symptoms vary widely from discomfort to severe pain which mainly begins after food. In severe cases the patient can suffer from jaundice, nausea and fever. The most common reason for gallbladder disease is gallstones.

What are gallstones?
Gallstones are solid stones formed in the gall bladder from cholesterol, bile salts and calcium. They can vary in size from a few millimetres to a few centimetres.

What causes gallstones?
Gallstones are formed when bile contains too much cholesterol. The excess cholesterol forms crystals from which gallstones are made.

Who is at risk of developing gallstones?
Gallstones are seen in all age groups but they are rare in the young. The possibility of developing gallstones increases with age.

The following groups are considered to be at increased risk:
people who have relatives with gallstones
obese people
people with a high blood cholesterol level.
women who take drugs containing oestrogen, eg contraceptive pills
people with diseases such as chronic intestinal inflammation (Crohn's disease and ulcerative colitis).

What are the symptoms of gallstones?
Not all gallstones cause symptoms and those detected during a scan performed for other reasons do not usually require treatment. This, however, should be discussed with your doctor.

Symptoms can be extremely variable, but usually present in one of three ways.

Chronic cholecystitis (biliary colic)This is a long-term inflammation of the gall bladder and causes:
sporadic pains in the middle of the upper abdomen, or just below the ribs on the right side
pain which becomes worse over an hour and then stays the same
pain that may spread to the right shoulder or between the shoulder blades
pain that can be accompanied by nausea and vomiting and sometimes excessive wind.An attack can last from a few minutes to two to three hours before getting better. The frequency and severity of attacks is very variable.Attacks can be triggered by eating fatty foods such as chocolate, cheese or pastry.It can be difficult to distinguish the pain from other diseases such as gastric ulcer, back problems, heart pains, pneumonia and kidney stones.

Acute cholecystitis (acute inflammation or infection of the gall bladder)
This condition results in:
persistent pain and a temperature lasting more than 12 hours
pain and tenderness under the ribs on the right side
pain that is made worse by movement or coughing.Patients with acute cholecystitis may not always have gallstones, but usually do.The condition must be treated by a doctor and usually requires admission to hospital. Treatment consists of a course of antibiotics. If this is not effective, emergency surgery may be required to remove the gall bladder.

Jaundice (yellow discolouration of the skin and whites of eyes)
This is caused when there is an obstruction to the flow of bile from the liver. Jaundice is not always caused by gallstones. The symptoms are:
increasingly yellow eyes and skin
skin can become itchy.
pale bowel motions and dark urine.

The condition is often preceded by symptoms similar to those of cholecystitis. Fever and shaking chills are serious symptoms and must be treated by a doctor - they are suggestive of infection travelling through the bile duct system.

I hope you find this info useful. There was a lot more at the site so any of these links will give you more if you are looking.

Until Next Time...

Counted as normal

2008-05-17T10:43:00.000-07:00

As a Crohn's patient, are there things that you accept as just part of everyday life - that you just deal with and it becomes so second nature that you really don't even give them a second thought. Things that the rest of the "healthy" population would just look at us and think we are crazy. Here's what got me to thinking:

When I went and saw my GI doc not to terribly long ago, he asked on average how many times I went to the restroom a day for a "Crohn's moment." My answer was 6-8 times and I didn't even give it a second thought. You see, when I was fir diagnosed - I was going 20-22 times a day, so 6-8 is a drastic improvement. He looked at me very puzzled and said "You know that's not normal - right?" Well I guess in my head, I do know that the average human does not go to the restroom 6-8 times a day, but I have just dealt with it for so long, I just don't think about it.

Got me to wondering what else in my life I just count as normal, but everyone else in the world would think we are crazy? Anything you can thing of that may help the rest of the world add some insight to us "crohnies" would be great.

Crohn's Patient Robert Hill Reaches Peak of Antarctica's Tallest Mountain

2008-05-08T18:48:00.000-07:00

Here's a pretty coolstory I found out on the net tonight. Just thought I would share. This story come from www.everestnews.com/stories2005/crohn01152006.htm. I put a link to Rob Hill's website "No Guts Know Glory" on the sidebar, as well as "I.D.E.A.S." which is an organization he helps to support. Hope this story inspires you as it did me.

- Accomplishment Marks Fifth in Seven Summits Campaign for Intestinal Disease Awareness -

Crohn's disease patient Robert (Rob) Hill has summited Vinson Massif, Antarctica's tallest mountain. Hill's team began the climb on January 12th and successfully reached the mountain's peak at 9:00 P.M. G.M.T (4:00 P.M. E.S.T.) on January 19th after eight days of erratic weather and sub-freezing temperatures.

The expedition, sponsored by ConvaTec, a world-leading manufacturer of ostomy and wound care products, marks the fifth in Hill's quest to become the first Crohn's patient and ostomate to scale the Seven Summits, the tallest peaks on the seven continents. By taking on the Seven Summits, Hill hopes to show other people living with intestinal diseases or an ostomy that they should still live their lives to the fullest.

"There was a time when I could barely climb up the stairs from the debilitating pain of Inflammatory Bowel Disease (IBD). So to think that I would ever see Antarctica, let alone climb Vinson Massif, has been a dream come true," says Hill. "Not everyone living with IBD needs to climb mountains, only to live their lives to the fullest."

Nearly 1.5 million Americans are affected by Crohn's disease and ulcerative colitis (collectively known as Inflammatory Bowel Disease), and approximately 750,000 Americans are living with an ostomy due to either IBD, colorectal cancer or other chronic bowel or bladder diseases.
Fewer than 100 people over the past 20 years have successfully scaled the Seven Summits. The feat is hard on anyone, much less someone without their colon, the organ that is primarily responsible for absorbing water and nutrients into the body.

Each climb Hill makes takes a toll on his body. Keeping up his nutrition and hydration is paramount, but even still, he typically loses up to 15 percent of his body weight on each climb.
Rob's Story -- No Guts, Know Glory!

At 23-years of age, Rob was a strong, healthy athlete who had never been sick in his life. Then, confronted with daily diarrhea and sustained, stabbing abdominal cramps, he was eventually diagnosed with Crohn's disease and ulcerative colitis.

As his condition grew worse, Hill lost 80 pounds and a year and a half later his large intestine was removed through an ostomy procedure. "When it came down to losing my colon or losing my life, it wasn't a hard decision to make," he says.

Now, 12 years later, Hill is mid-way through a five-year campaign he calls "No Guts -- Know Glory!" to become the first Crohn's patient and ostomate to climb the Seven Summits. The campaign grew from Rob's love of sport and the outdoors, pursuits he returned to with newfound dedication not long after surgery.

To date, Hill has successfully scaled five of the Seven Summits -- with Vinson Massif being the coldest climb to date (average daytime temperature of -20 degrees F). Conditions on Vinson Massif were so unpredictable that the weather would change from clear and sunny skies to blinding snowstorms in a matter of minutes. But to Hill, what separated Vinson Massif from the other Seven Summits is the complete isolation of the mountain and breathtaking views of the Antarctic landscapes.

For his inspirational efforts, Hill recently was recognized by the Crohn's & Colitis Foundation of America (CCFA) and ConvaTec with an honorary award from the Great Comebacks(R) Program, which, for more than twenty years, has given special recognition to those whose life stories inspire people living with an ostomy.

"I know from experience that Crohn's and colitis can be debilitating and make you feel very inhibited -- physically and emotionally," says Hill. "If you are living with these diseases or going through surgery it's important to know that you can get your life back -- you shouldn't let it define you."

Today, Rob continues to break down barriers for people living with intestinal diseases, letting them know that "it's okay to talk about these conditions and not something to hide behind." This year, Rob will be traveling to CCFA affiliates nationwide, speaking to patient groups about his own experiences and encouraging people to get out and conquer their own personal summits.
Small Steps, Giant Strides Toward IBD Awareness

Hill began his No Guts -- Know Glory! quest in 2002 and has now scaled five of the Seven Summits:

* June 2002, Mt. Elbrus, 18,481 feet (5,633 m), Russia/Georgia, Europe
* October 2003, Mt. Kilimanjaro, 19,339 feet (5,963 m), Tanzania, Africa
* January 2004, Aconcagua, 22,840 foot (6,962 m), Argentina, South America
* June 2005, Denali/Mt. McKinley, 20,320 feet (5,895 m), Alaska, U.S.A., North America
* January 2006, Vinson Massif, 16,067 feet (4,897 m), Antarctica.

My Surgeries

2008-05-07T01:22:00.000-07:00

Hi again, I thought I would add to Chad's post about surgery.

I don't know if surgery is inevitable in Crohn's, as I think it depends on how early a person is diagnosed and then treated, and how they then respond to that treatment. I do believe however that some consultants and surgeons are a bit too “knife-happy” and that they can sometimes resort to surgery when really they could have hung off a bit and been a bit more patient. However, it is always difficult to tell. Maybe these “knife-happy” surgeons just truly believe they are doing their best for the patient. Who knows? But whatever their reasons for putting someone forward for surgery, it's still frightening to the person who is about to undergo the dreaded knife.

I've now had 6 major ops, including an ileostomy reversal. When I was 14 I had my first big op, and unfortunately by then my insides were in such a state that I had 11 long and very narrow strictures (permanent scarring of the intestines), and apparently the surgeons found it hard to decide which ones should stay and which ones should come out, as they didn't want to leave me with hardly any small bowel, being so young. However, they managed to perform stricturoplasties on the remaining strictures – which kind of stretches them. I don't know whether you know that having Crohn's in the small intestine can be tricky as you just cannot survive without it as it's where all the nutrients are absorbed into the bloodstream. There are cases of people having had so much removed of their small intestine that they now have to be fed intravenously through a vein in their chest – called TPN (total parental nutrition). I expect you can imagine, that's not really something anyone would willingly choose to have, but some people have no choice. I'm hoping that it's something I will never have to face, but at the same time I have to be realistic and realise that apparently I don't have a great deal of small bowel left. I also try and take comfort in the few people I know on Crohns Zone who are on TPN, as they are such amazing, strong and admirable people and they just get on with their lives despite all they have to deal with.

My next ops were at the end of 2003 and beginning of 2004. I say “ops” because I ended up in emergency surgery twice, following a small bowel resection in the terminal ileum that went rather wrong. I basically ended up with internal bleeding after the first scheduled op, and had to be rushed back to surgery to be patched up, only to end up being rushed back again when they discovered I was bleeding and leaking again and had widespread infection. I also lost my ileocaecal valve which apparently is the reason why I will have the dreaded D forever as the valve helps to regulate how fast the waste moves into the large bowel. By this point I was in the High Dependency Unit, literally fighting for my life. I had all sorts of complications on top – pneumonia, collapsed lung, a bed sore, infection, and a severe spinal fluid leak from an epidural which fell out of my spine. I had to be stitched up again to try and prevent more leaking, but by that time I was in totally agony in my head as it felt like my brain was being crushed. The docs were wondering whether to transfer me to a special spinal unit, but instead I think they got their advice on the phone and dealt with me there so as not to move me.

After the third op, I woke up with an ileostomy bag attached to me. It had been decided that as the two ends of my bowel were too weak and would not join together, that they should have a rest and be brought out onto the surface in a double-barrelled stoma. I was not expecting to have a bag and so it was rather a shock (although I was so ill I didn't have the energy to worry) and in retrospect I'm so glad they did it, as I believe it saved my life. I know the docs and surgeons were really worried about me as they were always popping in to check on me. I know they weren't sure that I would survive so when I did eventually pull through they were genuinely happy for me. They were a super team – all of the people involved in my care that horrendous time, and I know just how lucky I am to be alive today. I don't think anyone could quite believe it when I finally walked out of the hospital, rather doddery on my feet as I had lost so much weight and I'd had to have intensive physiotherapy to help me walk again. Boy did it feel good to be walking though after being flat on my back for so long!

Learning to cope with an ileostomy was rather difficult, as I kept leaking everywhere which resulted in nasty sores, rather like acid burns as the waste that comes out at first is very acidic, and I had to keep seeking advice from the stoma nurses to try and find the right appliance for me. One of the major problems for me was that I am a rather small build and therefore had a small tum/surface area, and my stoma nurse said I could do with paediatric stoma bags etc, which would have fitted perfectly on my small tum, but the baseplates would not have fitted the hole of my stoma. Gradually though I started to get used to it, even though it was very tough at times. I think the worst thing for me was adjusting to my new body image and also worrying if anyone could tell that I had a stoma. I felt I couldn't wear the same clothes that I had worn before and so tried to hide behind baggier tops etc. My stoma nurse said that unfortunately my stoma wasn't sited in the best place for me to wear the clothes I liked, but that obviously as it had been an emergency it was difficult for them and they did their best. If I'd had it for longer then perhaps I would have had an option to re-site it lower, but 6 months later I had the reversal operation. That was quite a relief!

In 2006 I had my last op. They managed to form a stricturoplasty I think, so as not to lose any more precious bowel. I had a lot of wound complications following that as my wound literally burst open whilst in the hospital shower. I think the whole scene must have resembled something out a psycho film with blood everywhere. I had such a deep wound that it had to be packed daily with seaweed stuff, and when I eventually went home I had daily home visits from the district nurses. It took months and months to heal but at last it closed up and I was so pleased to be allowed a bath!

I'm hoping that will have been my last ever op, but you can never tell what's going to happen round the corner. I'm just trying to remain positive that at the moment I am enjoying my life as full as I can, and am savouring every precious moment of it. Wishing you all well, Ruth x

Weighty Issues.

2008-05-04T00:09:00.000-07:00

In answer to Chad's comment on my recent blog post re weight gain whilst on steroids.

I forgot that 'Statesiders' describe their weight in pounds only, so clarification is needed when using the British term "Stones". My weight is currently 12 Stones exactly (written 12st). A stone is the UK Imperial Measurement for weight and is made up of fourteen pounds - so my weight is 168 pounds (168lbs) (12 x 14lbs).

It's a silly measurement in the same way that the old British currency was silly (240 pennies in a Pound (£)) but still widely used, although we should now have adopted the European standard of Kilogrammes I suppose, but I haven't got a clue what a pound or a stone equates to in Kilogrammes. (How anti-European Union of me!!)

Gary

How do you remember???

2008-05-02T18:08:00.000-07:00

As Crohn's patients, we all inevitably take a lot of medication. I remember when I was first diagnosed I had to take medication on an empty stomach when I woke up, then with breakfast, the on an empty stomach after beakfast, empty stomach before lunch... on and on it went.

Fortunately, now most of the medication I take is first thing in the morning, with or without food (my preference). But I take Pentasa 4 times a day. So I have to spread it out even through the day. The trick for me is remembering to take it each and every time. So I have an alarm set on my watch for 4 different times during the day to remind me to take my medicine. Most of the time I'm pretty good about taking it when the alarm goes off, but there are times when I just don't feel like it. It get so sick and tired of taking medications.

Luckily for me, my youngest daughter has also become part of my alarm system. She knows now that my alarm is set to remind me to take my medicine. So every time my alarm goes off, I hear this sweet little voice saying "Medicine time daddy." Who can resist? Not me.

So here is my question - how do you remember to take ALL of your medicine EVERY day? Please do share.

Until next time...

Cimzia® Approved in the US for the Treatment of Moderate to Severe Crohn's Disease

2008-05-01T17:12:00.000-07:00

Found this on the web tonight - thought I would pass it along. It came from the website - http://www.ucb-group.com/media_centre/3384.asp

Administered every four weeks, UCB's pegylated anti-TNFα offers new treatment option for patients with moderate to severe Crohn's disease.
Cimzia® will be available in the US within the next 48 hours.

Brussels (Belgium) - April 22, 2008 - 19.30 CET
UCB announced today that the US Food and Drug Administration (FDA) has approved Cimzia® (certolizumab pegol), the first and only PEGylated anti-TNFα (Tumor Necrosis Factor alpha) antibody indicated for reducing signs and symptoms of Crohn's disease and maintaining clinical response in adult patients with moderate to severe active disease who have an inadequate response to conventional therapy.

"The approval of Cimzia® in the United States is a significant milestone for both UCB and our Cimzia® team, but especially for people suffering from Crohn's disease," said Roch Doliveux, Chief Executive Officer of UCB Group. "Cimzia® is a UCB biological innovation that will provide a monthly treatment option for patients suffering from Crohn's disease. Cimzia® will be available to doctors and Crohn's patients in the United States, which represents 70% of the world Crohn's anti-TNF market, within the next 48 hours."

The approval of Cimzia® was based on safety and efficacy data from clinical trials in more than 1 500 patients with Crohn's disease. Each pivotal study demonstrated that a statistically significant greater proportion of moderate to severe Crohn's disease patients achieved and sustained clinical response with Cimzia® for up to six months, compared to placebo. These data also showed that of the patients who were in remission after initial dosing, the majority maintained remission with no dose escalation.

Cimzia® is the first and only PEGylated anti-TNFα. Cimzia® is dosed subcutaneously every four weeks after initial dosing, making it a convenient option for people with moderate to severe Crohn's. Cimzia® has demonstrated a low incidence of injection site reactions and injection site pain in clinical trials. The most common reported adverse events in the pivotal studies were upper respiratory tract infection (cold, flu), urinary tract infection (bladder infection) and joint pain. As seen with the use of the other anti-TNFα agents, serious, but infrequent infections and malignancies have been reported.

"The clinical trials program has shown Cimzia® to be an effective subcutaneously-administered treatment, with a low rate of injection site reactions," said Stephen Hanauer, M.D., Professor of Medicine and Clinical Pharmacology at the University of Chicago. "The approval of Cimzia® provides a new option for people with Crohn's disease to achieve relief from this debilitating condition with a convenient, stable administration once every four weeks."
About Cimzia® (certolizumab pegol)

Cimzia® is the first and only PEGylated anti-TNFα (Tumor Necrosis Factor alpha). Cimzia® has a high affinity for human TNFα, selectively neutralizing the pathophysiological effects of TNFα. Over the past decade, TNFα has emerged as a major target of basic research and clinical investigation. This cytokine plays a key role in mediating pathological inflammation, and excess TNFα production has been directly implicated in a wide variety of diseases. UCB is developing Cimzia® in Crohn's Disease, RA and other autoimmune disease indications. For additional information, including safety information, please refer to the Cimzia® factsheet in the "News" section of UCB's website (http://www.ucb-group.com/).

Surgery as part of life

2008-05-01T16:53:00.000-07:00

So many of the stories I hear about Crohn's patients inevitably come back to a time when they had surgery. Whether it was early on in their diagnosis or later in life - it alays seems to come back to it.

My major surgery was back in January of 1999. My oldest daughter was about 6 months old. I had a resection of my small intestine and large intestine. Where my Crohn's was at, the place where the small & large intestine meets, was taken out. Unfortunately, as all Crohn's patients know - Crohn's never goes away. I was out of work for about 10 weeks, but it truely took me probably a year to fully get over the surgery. Honestly, where they made the incision in my stomach, I still have no sensation of touch for about 3 inches below the incision - which is a really freaky feeling.

I'm had some other minor stuff done - mostly surrounding fistulas, which seems to be pretty common for Crohn's patients as well. But no other surgery as major as my intestinal surgery.

So, that's my surgery story in a nutshell, I'm wondering if anyone else would care to share their surgery stories - either writing a post or commenting here. I'm sure we have a lot of people who would be interested in hearing what surgeries are going on and how everyone has dealt with them.

Until Next time...

A big warm hello!

2008-05-01T01:53:00.000-07:00

A big warm hello to all! As I'm new on here I thought I should introduce myself!

I'm Ruth, 28 and currently living in the glorious and amazing french alps. Every day that I am here I count myself totally blessed and believe that God (or someone) is smiling down on me! As well as living in a beautiful place, I have several special people in my life who I hold dear, and I would describe my love life as a little “complicated but interesting”. I currently have no children.

I was diagnosed with severe Crohn's disease back in 1991 when I was just a kid, although I had suffered with various symptoms since the age of about 3. When I was 11 my condition suddenly progressed till I was only a skeleton, couldn't walk, couldn't keep anything down – not even water, and was in severe agonising pain. When my dad presented me at the local A&E, the paediatrician doc said I would have probably only had another week to live at the most. Thankfully my prayers to God had worked! Since then, I've had a fair few more brushes with death, and I count myself incredibly lucky to be alive and enjoying life today.

Since my diagnosis, I have been on total nasal gastric (ng) tube feeding – was on that for around 8 years throughout my childhood and have been on elemental diets ever since – sometimes as a supplement, have been on copious amounts of steroids which has caused me to develop osteoporosis (was on steroids Crohn's for my asthma as well as Crohn's), have been on various other medications including non-steroidal anti- inflammatories and immunosuppressants – all to no great effect (apart from one trial which I will tell you about another time), and have had 6 major operations, including an ileostomy which has since been reversed. My Crohn's is mainly in my small bowel, and as I understand it, I don't have a lot of it left due to many bowel resections and am in the “danger zone”. Thankfully in my last op, my surgeon managed to conserve the bowel instead of remove part of it.

Although Crohn's has been played a big part in my life, I have always tried my best to stay positive and to live life to the fullest as possible. I'm a great believer that you only have one life, so it is up to us to make the most of it. Obviously there have been many a times when I've just not been well enough to do the things I've wanted to do, and have had to reluctantly sit back and be patient. Admittedly learning to be patient when you are a bit of a go-oer like me, can be one of the hardest things to do! I'm nearly always cramming my life full of things I enjoy doing, sometimes in the past to the detriment of my health, and so various friends and family have to sometimes remind me to slow down and take it a bit easier! To be honest I know that having been in pain for a good chunk of my childhood and beyond, I developed a way of almost blocking out the pain so that I could continue with my life and try not let it get in my way. Unfortunately, at times I have become so apt at blocking out pain that I haven't always noticed when my condition has been getting progressively worse, and again it's taken other people – sometimes health professionals, to point it out to me. Some people might like to call this blocking out “denial” but I don't think it's quite like that, as if I knew I was so ill I certainly wouldn't beat about the bush in getting myself help. I just think that I have lived with it for so long that I have kind of become immune. Although things are starting to change now I'm living in France, as my health has taken a wondeful “up” turn, for the first time in my life, and although I'm not 100 % well, in comparison to how I've felt before, I feel pretty damn wonderful! I pray that long may this last!

Right, I think that's enough for now as I've written you an essay! Lol. Looking forward to popping in again sometime soon. Take care and hugs to all, Ruth x

Guys you've got it a little easier!

2008-04-09T12:00:00.000-07:00

Ok sorry guys. I hate to blog this BUT......
As if crohn's isn't bad enough. With stomach cramps and bathroom issues. Us ladies have to deal with PMS too. One thing that I am definitely finding is that 1x a month my stomach cramps and diarrhea get alot worse and then I started connecting the dots. I feel like I am about to have another flare up and then I look at the calender. Sometimes it can be so bad that I contemplate the ER or another dreaded doctor visit.
Not that most of you GUYS care about this. But, I do find it interesting that it effects me as much as it does. So maybe the ladies would find it interesting.
All of that to say.....
Eve should have kept her apple to herself and my life would be much better.

2008-04-06T15:06:00.001-07:00

Undergoing MyBlogLog Verification

Things we think are lost

2008-04-06T12:57:00.000-07:00

When I was in high school, I used to enjoy running. Yes, I was one of those people. I ran in raod races and ran long distance on our track team. I wasn't very good, but I enjoyed it tremendously.

Within 6 months after graduating from high school, I was showing pretty severe signs of Crohn's though I would not be diagnosed for another 2 years. I was tired all the time, with no energy to do any of the typical "college" things you would do when you go away to school. I had to give up running shortly after high school, simply because I just couldn't.

Over the last 15 years, there have been several times where I have wanted to get back to doing one of the things I loved, but I just wasn't physically able. I could run 1/4 or 1/2 mile, but that was about it. I had no stamina and could not build any because my body just wasn't ready. Until now...

I started running again back in the fall of last year. Slowly but surely I was able to run longer and farther. Then I hurt my knee of all things and had to stop for the last six weeks of the year. I decided I would start again this year as part of my New Year's resoltion. After running for the few weeks in the fall, I new I could and that my body was ready.

Fast forward from Jan. 1 to yesterday - I finished my first 100 miles of the year. This amount of time and running commitment is something that I never thought I would be able to do again in my lifetime, and honestly it was something the doctors told me I most likely would not be able to do. But here I am.

Someone asked me why running was important to me at this point in my life, I told them I am running for those with Crohn's who can't. There was a time when I could not have dreamed of doing this.

So, for those of you ready this who are early in your diagnosis, I hope that this story gives you hope & encouragement. Those things that you love but you may not be able to do now, do not give up hope that you will be able to do those things again. It may take time ( a lot of time for me ), but there is hope.

And for any of you who want to travel, but think you can't with Crohn's - click on Lizzi link in the authors section on the right. Check out where the Crohn's patient has spent the last 3 months.

Until next time...

Crohn's College Scholarship

2008-04-02T17:13:00.001-07:00

Here's something I just read about thought I would put it out here to pass it on. Very, Very interesting. There is a college scholarship for Crohn's patients. I'm putting the link below in this post - but there is a link to the general website "Crohn's and Me" over in our list of crohn's websites.

I know there are lots of younger Crohn's patients out there & maybe something like this can help them with College. Wish I had had something like this back in the day.

http://www.crohnsandme.com/thescoop/scholarship.asp

Until next time...

Introduction

2008-04-01T23:09:00.000-07:00

Hello Fellow Crohnies!
Just a quick word from me by way of introduction. I am Gary, a forty two year old man living and working in the UK. Happily married to long suffering wife Lesley for the past fifteen years and blessed with a daughter, Emily, five years ago.

I was diagnosed with Crohn's Disease at the beginning of March this year (after years of linked symptoms) and am currently in the 'finding out' phase, where everything is a challenge and a mystery and, to a certain extent, a fear. I say 'fear' lightly, because compared to the fears I had prior to diagnosis, well they're much reduced I can tell you! Though there still remain the kinds of fear every newly diagnosed patient will encounter - what will the treatments be? Will I ever feel 'normal' again? What are the risks? etc. etc.

I am in a massive learning curve and I started my own blog to record this journey. In doing so I came across a number of other related sites and blogs - Crohn Zone has been one of the most helpful, and they're a great bunch of people to chat to, scream at, moan to and generally vent all of the frustrations of the disease. The disease is so full of variety, has so many different manifestations, affects people in so many different ways and has so many different treatments it needs a Crohns Zone to pull everything together and share experiences - and, at times, have a light hearted swipe at it all. Check it out (link on the right)

I hope to be popping in here every once in a while to update on progress and share experiences with you.

Anyway, that's me for now. Thanks for listening.
Gary

Pretty Cool Story

2008-04-01T17:54:00.000-07:00

If you ahve not visited the Crohn's Zone, it is worth checking out. The link is on the right. Pretty good sight for connecting, forums, and chats. If you get a chance & have some time to read...check it out.

I was there tonight and one of the threads in the forums takled about "the spoon theory." Didn't know what they were talking about but my curiosity was peaked. I'm going to put a link to this story at the bottom of this post. It is a great story for helping others understand what we as Crohn's patients go through daily.

FYI - I'm putting this in here as a link instead of copying and pasting because it is copyrighted. So if you happen to pass this on, please give credit where credit is due.

Click on the link here to read this story: But You Don't Look Sick

Until next time...

Medications. Medications. And more Medications!!!

2008-04-01T16:23:00.000-07:00

I thought it might be interesting to talk about all the different medications that we take as Crohn's patients. I know there is lots of different stuff out there, and what works for one of us may not work for another. But it would still be an interesting excercise to see what everyone is currently taking and how you are doing with it, what you have taken in the past that maybe didn't work and why, or is there some new stuff out there that you intend to ask your doc about trying.

Currently, I'm on 1000mg of Pentasa 4 x day, 50mg of Imuran 1 x day, and 40mg of Omeprazole 1 x day. For me, this is probably the least amount of medications I have taken since I was diagnosed 15 years ago. When I was first diagnosed, I was taking about 40 pills a day. My medication now is primary preventative maintenance medication, since my Crohn's is currently in remission.

Share with us as much info as you want about your current medication. Themore info we have, the better it is for everyone.

Food!

2008-03-31T15:50:00.000-07:00

Oh my weakness! After being diagnosed only 3 months ago I am still playing the "Food game". It makes absolutely no sense to me and in fact drives me crazy most of the time. It seems like one day I can eat somethings and then the next time I try that same food, it sends me into a tale spin and I am laid up in bed for a while.

Things that I have learned to steer clear of no matter what:

-Popcorn (and I LOVE popcorn!)

-Rice

-Cucumbers

-Strawberries

-Corn

-Apples

I have also discovered that "dark" sodas tend to upset my stomach. The stress is that I tend to live in fear of alot of foods. I am scared of nuts and anything seedy. It could be that these things don't even bother me, but fear keeps me clear of them. It is very hard for someone who loves food as much as I do to be so afraid of everything I eat. Sometimes my cravings get the best of me. I guess it just depends on what you are willing to go through in order to satisfy a craving.

One thing that amazes me most about Crohn's and other stomach related illnesses is how random things are. Where milk can send some people to the hospital and it doesn't phase others. An apple can be great for some but it will send me to bed for two days. One thing that helped me alot was journaling. I wrote all of my foods, symptoms, meds, sleep, emotions, doctors notes, etc. for about 2 months. It helped me to see patterns as well as it made me stay aware of my body.

Food will always be my greatest weakness and with Crohn's it is also my greatest frustration. Even though I hate the crap (HA! no pun intended), it doesn't stop me from trying to live freely and experience life fully.

What to eat?

2008-03-30T14:41:00.001-07:00

As anyone with any stomach realted issues knows, one of the biggest problems we all face is what to eat. What do we eat when we feel really good and can get away with a little more? What do we eat when we are feeling just "ok"? What do we eat when we are in the middle of an attack but we have to get wome type of nurishment? What are your go to , "when all else fails" foods?

I'd love to get some feedback from you on what and how you eat. You can share it in the comments or if you want to post something seperate, email me and I'll give you the link.

So here goes my list:
Feeling great
Fortunately, after 15 years, my Crohn's is pretty well under control. So when I'm feeling really good, I eat pretty much anything I want - even the stuff the docs tell me not to. I lean toward the spicier foods, & believe it or not, the stuff with peppers in it make it better, not worse for me.
Feeling ok
I love pasta with light sauces. The heavier sauces tend to bother me. I do my best to stay away from the greasier stuff, especially since I had my gallbladder taken out about 11 years ago. I don't go overboard on anything that is really high fiber, cause that stuff borthers me too.

Feeling bad
When it's bad I typically go for the stuff that is not really solid. I love grits, of course that is a couthern thing, so some of you may not know what they are or care for them. Cream of wheat is right there with the grits & is almost the same stuff. Jello is always good for me too.

So, that is at least a start for us - I'd love to hear about your comfort foods, because we all need some new ideas.

Until next time...

Chadwick

PS - I am editing this afterward to add one more thing. I absolutely love Coke. But since I'm trying to lose some weight, I'm abstaining for now. Here's 2 recommendations of drink I really, really like & they do not bother me, they taste good, and they actually make me feel a little better. Crystal Light Iced Tea - I drink this stuff all the time. I drink hot Peppermint Tea every night about an hour or two before bed. The warm water aids digestion, and peppermint is a natural anesthetic for your stomach. I've found that Peppermint Tea helps me to sleep a lot better.

Men's restroom on the left

2008-03-28T11:34:00.000-07:00

I thought I would get us started with our writing, sharing something I put on my own blog about a month or so ago. I know as Crohn's patients we all have those wonderfully qwuirky, somewhat embarassing moments. This is one of mine. And I'll just warn you, if "bathroom" humor bothers you - stop reading now!!

Just to set the stage (so to speak), you have to understand that as a Crohn's patient I go to the restroom approximately 8 - 10 times per day (and yes I talking about #2 not #1). So you can kindof understand that as an insurance sales rep, I am out and about all over North Georgia, so I have to know where the decent (clean) bathrooms are for just about anywhere I'm traveling.Unfortunately, traveling around and going to the restroom in so many different McDonald's restaurants, I guess I have gotten way too used to where the restrooms are and how they are laid out and extactly where they are in the restaurant. Today I had a Crohn's moment hit & I just had to stop. I'm not going to say the name of this small city close to home, because it only has 1 McDonald's & someone might have seem me there. I get out of my car & run for the McD's door ... walking anxiously for the restrooms. I head for the back & go for the door on the left - make my way to the stall & sit down to do my business. After a moment, my thoughts went down this path - "Wow this McD's is really nice, they have 2 stalls. Normally when I go to a McD's, the guys bathroom only has 1 stall (& I inevitably end up having to wait on someone else to get done) and 1 or 2 urinals. Wait a minute - Did I see a unrinal?? Oh My - I didn't see a urinal. Did I? Oh no - I honestly don't remember. I may be in trouble!!! Could I be in the wrong restroom? I need to get done quick, just in case. Oh and I need to be quiet, cause If I am in the ladies room, I don't want them to hear me." So I get done, listen for anyone that might be out there. And then as I open the bathroom door to make my escape, I look across from the door I am exiting and see the sign that says "Men" on the door opposite me. Needless to say, the door I was exiting said "Women." But I did at least make the McD's employee, sitting just outside the restrooms, laugh heartily - because he watched me go in & come out. "Dude, you could have saved me!!"

So my lesson from today - even when you are in a hurry to go - make sure to read the signs. Oh, and just because most of the McD's put the men's restroom on the left (and if you don't believe me look the next time you are in one), doesn't mean that they are all on the left. Note to McD's - us Crohn's patients would appreciate a little more consistency in restroom placement.

I'd love to have more of you come and share your stories, whether funny or sad. I know you all don't what to have me being the only writer here. So email me at dcparson@gmail.com if you are interested is writing. I'll get you added in as an author. Blogger will only allow 100 authors at a time, so there is a finite number of writing spots available.

Until next time...

Chadwick

Confession of a Crohn's Patient

2008-03-27T12:43:00.000-07:00

Brand new blog with hopefully a new outlet for all of you Crohn's patients out there like me. I thought it might be interesting to have one blog where we can all come and write about all the wonderful Crohn's related issues in our lives.

This blog is open to anyone who would like to write something. Some of us do have other blogs where we write - we will have a link to each individual authors blog, if you have one. If you are interested in writing, just email me and I will add you to the writers list and give you access.

Ideally the writers on this blog will be Crohn's patients, or their spouse, family, or someone else with a vested interest in the life of a Crohn's patient. This will be a place where we can encourage, laugh, cry, get mad, scream, shout, or just share your funny stories (you know we all have them). I'll ask that the posts be at least pg rated. We will have lots of younger readers and their families. But all of our readers have to understand the life of a Crohn's patients always leads to the toilet, so I expect that some of our posts will lead there as well. Anything deemed offensive will be removed, and the writer's permission revoked.

That said, let's have fun. Share & encourage each other.

Chadwick