Medication du jour - Pentasa

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...

Counted as normal

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.

Surgery as part of life

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!

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

Introduction

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