Update: Bad relapse -> Hospital -> No more colon

Last time I wrote was a while back, perhaps six month ago, when I was in remission and all seemed to be going ever so well. I was managing with careful diet, and rectal enemas for minor flare ups.

A couple months ago a new flare up started, so I went back on the enemas but this time it just kept getting worse. The whole colon became affected, and the immune system started to affect other organs too, making the tissues in my right lung inflamed, which started to affect my breathing.

I was advised to go to hospital, and the doctor suspected a blood clot in the lung, as apparently ulcerative colitis patients are in a high risk group for developing blood clots. I had x-rays and a nuclear scan to the chest, but no blood clots where revealed. I was also put on IV steroids (hydrocortisone) for over two weeks, at a quite a high does. This solved the breathing issue within a few days (I guess the inflammation in the lung went down) but my bowels improved initially, then the toilet visit frequency returned to being fairly high (around 15 a day). I was put on a high dose of immunosuppressant drug (Ciclosporin) for while too, but that did not work either.

A meeting was arranged with the surgeon, and I was lucky to be assigned one of the top surgeons here in England (Mr Skipper). He said he could perform an emergency surgery the following day, and explained that if my general health where to get any worse I would not be fit enough to undergo such a major surgery. He also explained that he is "old fashioned" (in fact he is only few years away from retirement) and he does not perform keyhole surgery but rather prefers the full section approach. I agreed to the surgery and decided it is for the best. I have been suffering with UC since being first diagnosed back in 2005 and have really had enough by now.

The surgery went well, and I was recovering well. But just on the day I was meant to be going home, my stoma started to get bigger and extend. I was seen be a succession of medics, including a stoma nurse who is usually very good at manipulating the stoma with here fingers and pushing it back in. But she was not able to manage it. Eventually the surgeon came and saw me at 6 pm and he could see straight away that I had to have another surgery. He said, I'm very sorry but I will have to operate on this no later than tomorrow, it just can't be left like this, it would only get worse.

The following day (Saturday 23rd) I was under general anesthetic, the section had to be reopened to pull the small intestine back in. Apparently this is much safer than just operating in the local stoma area. Mr Skipper has lots of experience and takes no chances.

Not sure why the prolapsed stoma complication occurred. I think the most likely explanation is that for over two weeks prior to the operation I was being pumped with steroids which made my body shape very swollen and my abdomen larger it normally is. I was operated on in that condition, and there was nothing they could do about my body shape. By the time I recovered from the operation, my body returned to it's normal shape, and the stoma abdomen hole all of a sudden became too big for the stoma itself so it started to escape!

A week and a couple days on after the second operation, I feel a bit more with it (had a really fuzzy head for a while) and have more energy levels. Also the stoma has settled into producing thickish waste, rather than the runny stuff which I had for the best part of a day early on. I feel I can manage now with the stoma care, changing bags etc, and looking forward to a healthier life in general.

At some point, six months to two years from now, I will need to consider whether I wish to go for reconstructive surgery for a J-pouch, so that I can pass the wast from the anus again, or opt instead to having the anus and rectum removed and stick to the stoma and emptying the stoma bag like I do now.

Not sure, big decision, but not for a while, I'm leaning towards sticking to the bag at the moment, because I like the sense of control, and not having to keep rushing to the toilet like back in the bad old UC days. But will have to think some more nearer the time I guess...

Happy to hear you're healing after unexpectedly having to have surgery. Are you able to sleep through the night with a bag?

Wow, how awful! but it sounds as if you had the best of the worst, know what I mean? For an emergency surgery type situation, seems like things are definitely looking up! I bet you'll be feeling %100 better in about 6 months. They do have an ostomy forum- it's extremely helpful! You can select it from the forum drop-down box, or from the Healing Well main page. But- plse. keep posting here too, don't think you can't simple because you had surgery! Interestingly enough, there have been some recent posts about managing UC thru diet & minimal med use- enemas, suppositories, etc. Your experience speaks volumes re. that particular mindset.

tuppenceworth,

Sounds like you went through a lot. Congrats on being U.C. free!! In some ways I envy you because you can get one with your life without worrying about stupid U.C., especially once you fully recover from the surgery and get the hang of handling the ostomy.

I understand your ambivalence about getting a j-pouch. Some people love em and some people have problems, although they are a minority.

Thanks notsosicklygirl, I know what you mean, and pleased to say I'm already at the stage of feeling very relieved of being rid of colitis. You should have seen the size of the bag of all the various medicines which I left behind at the hospital, and will never need to take again. That in itself cheered me up. Also now already eating many things which I would have not dared eat before, and it feels good to be able to do that, and see that there are now adverse consequences.

I asked the surgeon at some point about sleeping on my right hand side (the stoma is about 4 inches to the right of the belly button area) and he said there is no reason why not. I suppose if you are worried, you can ware a sports shield on top, and then you can do what you like, including sleeping flat on your tummy if you wanted. It's a piece of plastic with a raised middle to accommodate the stoma, and you tie it round your waist with an adjustable elastic which hooks onto the plastic piece. I wore it for the first few days after the second operation as I was terrified of developing another prolapsed stoma should I moved sharply of coughed too hard or something. I have now a bit more confidence and no longer ware it but it was reassuring the first few days.

Last night I managed a 7 hour sleep at night, so it's getting better already, and today I tapered down to 5mg steroids from 7.5mg, so this should help with sleeping too.

Most folks on the ostomy site have ostomies due to Crohn's (Crohn's patients are able to have a jpouch). You can find a crap load of jpouchers at www.j-pouch.org I had jpouch surgery 10 years ago at age 42. My friend Gloria had the sugery 10 years ago at age 69! Age is not really a factor; good health is more of a factor. You have a lot of time to think about what you want; both options have sacrifices, but at least both options free you of UC!

Sue

After a bit of recovery, there is no urgency. I can hold it for a couple hours if I need to. I don't know how many times I go per day. It doesn't seem to be an interruption to my daily life so I don't bother counting. Most times when I head to the loo to pee, my pouch empties too. For me the choice was lifestyle. I still wanted to backpack and figured without potable water I wouldn't be able to change an appliance. I also really wanted to maintain normal function. I'm very happy with my choice and I've had a very full and active life post surgery. I just returned from a 138 mile hike through Wales (the Wye river) and was overwhelmed with gratitude that I can engage in the things that I love best, long distance hiking and international travel.

Sue