My Surgeries

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