Fistula surgery and temporary colostomy soon - what to expect?

[gracifer]

Hi guys.

Basically been suffering from Crohn's for the past 3 years, and I now have a fistula from my bowel to my navel (great fun!) I went to see the consultant on Friday and he told me that I was going to have to have an operation to remove the diseased bit of bowel (small bowel - including appendix) which in turn will get rid of the fistula which is scheduled for the 9th Nov. If it's a mess inside, which I guessing it will be after 3 years of not having it in control, I will have to have temporary Colostomy, which scares the hell out of me. It may only be temporary but, and I'm sorry for offending anyone here, but it's my worst nightmare. People have told me that it won't be forever, and better dealing with the fistula I have now which is unpredictable, gives me huge amount of pain but even so I find it incredibly scary. Also he said I had the stricturing disease, what does that even mean?
What should I expect from the surgery? Will it be painful when I wake up? How long should it take to recover, he just said i'll be really tired. I'm only 22, and never had an op before, so was just looking for advice. Has anyone had this before? Just would like a bit of help to calm me down here! I know it's all for a good reason - getting my life back but it's still really scary!

 

[David]

I'm sorry you haven't received a response until now. Here's a free bump in the hope that others will respond soon I hope you don't mind but I edited your title to be a little more descriptive in the hope it catches others' attention.

 

[elrafantas]

Hi gracifer,

I had surgery in February to remove a fistula - mine was from my small intestine to my rectum so food bypassed my large intestine entirely. I'm 28 and it was my first surgery. I also did not have Crohn’s under control for about 5 years beforehand and things were a mess inside - some of my large intestine was over the wrong side and had stuck to the pelvic wall with the fistula too (or something like that...I forget!) So the surgery took hours longer than they'd expected and they had to put a stent in my ureter so they didn't accidentally cut through it. They removed part of my small intestine and all of the fistula, and I woke up with an ileostomy which they had warned me was likely.

So when I first gained consciousness I was aware of pain and began shouting, but it's all really hazy. Then I was given something and went back to sleep, and when I woke up again it wasn't so bad - I had the morphine pump and they kept telling me to press it. I pressed it constantly and I was pretty out of it, it was great. I was smiling at everyone and staying stupid things all night…
"WHAT'S YOUR NAME? OH MY GODDDD THAT'S SUCH A LOVELY NAAAAAME, WOWWWWW" - to EVERY nurse that came near me.
“DID YOU HAVE FUNNNNNNNNN WAS IT FUNNNNNNNN?” - to my surgeon and his team.
“I’M REALLY HIGH” – to the wall.

So it was like this all of Friday night (I had the surgery on Friday morning), and some of Saturday. But then they went to transfer me from the ICU to the ward, so they had to lift me from one bed to another, and somehow in the middle of this transfer, the porter DROPPED ME (I think part of the bed collapsed which caused the drop), and I sort of plummeted down and it was the most painful thing ever. I then began to feel a lot worse but I’m not sure if it’s because of being dropped or the drugs wearing off somewhat! Probably a combination. I won’t lie to you, it was not a fun time, it hurt to move, it killed to walk, and the bag was a nightmare at first – it kept leaking and I got really dehydrated all the time (although I’m not sure this will be a problem if you’re having a colostomy). I ended up spending 18 days in hospital (10 days initially – longer than expected as I got a chest infection, 3 days for dehydration and 5 days for a kidney infection I got, which was stent related). 2 months on I was supposed to be feeling better (they say 6 weeks for recovery). I was walking a bit more and the stoma was fine, but I felt like shit and was still not back at work. Turns out I had an abscess where the fistula had been removed – so a couple of weeks of antibiotics, and THEN I felt great. In fact I have never felt so great in all my life - I eat like some kind of maniac, I walk for hours, I drink cider, sometimes by the gallon, I go on holidays and trips everywhere, all this stuff I couldn’t do for 5 years because my whole life revolved around finding a toilet. This seems ludicrous to me now. Having the surgery was the best thing I have ever done – it didn’t feel like that for those first 2 months – all I kept saying was “I wish I’d never had it done, things were so much better before, booo hooo sob sob,” – it felt like I would never feel better again because I just felt so bad. And 2 months feels like a lonnnng time when you’re sick, but now it just feels like a tiny snippet of time, which in the grand scheme of things, it was! I am having my ileostomy reversed this Friday and I’m genuinely sad because it feels like a little friend. A little infant alien friend. Can I ask why it’s your worst nightmare? Are you just grossed out by the whole idea? I was pretty repulsed when I first saw it and had to learn how to deal with it, and before it was under control I hated the whole situation, but once it settled down it was fine – I got used to it and now I think it’s the best thing on earth. If my Crohn’s flares up again after I have had the reversal and it gets as bad as it was before I had this surgery, I will be first in line demanding for another stoma, preferably a permanent one. It has not impacted my social life; in fact it has greatly improved it because before I was scared to do stuff because of my toilet problems. I do not care what anyone thinks about me having a bag of crap attached to my side! In fact I like to whip it out at random intervals and remind people that I am the coolest. Hopefully after some time of feeling great and being worry free you will feel the same.

I’m not overly familiar with structuring disease but hopefully someone else will be able to help you! I think it means parts of your intestines are really narrow so food has trouble passing through?

All the best to you. Feel free to message me any time