Please help me (ileostomy surgery reversal/permanent)

Maybe stop the suppositories and see if you have any improvement. It's possible that you no longer tolerate them. Two days should be enough to know. Although all the morphine will be masking the symptoms so you might now know anyways.

I'm in a messy situation. I spoke to my gastro with my parents and he explained everything. He said when I first came in he had me on injection steroids and he did a sigmoidoscopy which revealed mild inflammation, so he thought it'd be best to reduce my steroids in time for my appointment with the surgeon on the 19th. But the problem was that as he was reducing my steroids my inflammation was increasing and my sigmoidoscopy I had yesterday showed extreme inflammation. And he said he's never seen UC active like this in a rectal stump. The option he's given me is to have emergency surgery to get my stump removed. He said a surgeon is ready to do it this weekend if I agree. The problem is once you have your rectal stump removed it makes it a lot harder to have a reversal in the future. The other problem is he cannot do the removal of the stump and j pouch in 1 surgery because I'm still on steroids. Wierd thing is he's decided to restart the injection steroids today.

He said he's spoken to a lot of gastros in this hospital and they all agree with his opinion, although he said he will contact a colleague of his who works in St Marks and ask him for his opinion. He's saying if he was to refer me it'll take too long, from a week to a month before someone would see me there. And he's afraid that would be too much time wasted.

He said he looked into it, and hasn't seen biologics being used to treat rectal stumps. He spoke of Infliximab,but doesn't want to start that. Is this a viable option?

I personally think the best option would be trying to find an alternative to the steroids which would keep the UC under control until the steroids have finished.

I think it depends how badly you want to be free of the ileostomy. If you're okay with it, it sounds like surgery this weekend might be the quickest end to the misery of your rectal inflammation.

I say this because, I don't understand what they mean that losing the rectal stump would make it harder to reconnect? Everyone loses that as far as I know. You should only have a cuff left when all is said and done - the pouch connects to this cuff. The second step to get to a j-pouch is to have the pouch created from the terminal ileum and remove the rectum. After that point, you would be free of rectal inflammation. I don't understand why there is question of whether you can reconnect in the future if you go that route.

So, it sounds to me like they want to remove the stump and not make the pouch? I really think they are providing you with poor information. I don't know if it's you, or if it's them. I know we have explained the procedure to you...

The point is, if you want an internal pouch, I would insist on seeing someone else. I don't like the way this particular office is giving you information. I don't understand the option, why remove stump and not build pouch? If they build the pouch at the same time, you would be ready to reconnect in 8 weeks and you would be free of the ostomy bag.

Remicade could be an option. I am not sure what you've tried in the past so I can't say what your odds are. Remicade is for inflammation overall, it's not like an enema that only treats the area, that said, a steroid enema may help you - have you tried?

You need to ask yourself, how badly do you want to get rid of the ostomy bag? If the answer is YES 100%, ask them to try the remicade/steroid enemas or suppositories and get the referral to St Marks for the 2nd opinion. Perhaps these people aren't aware of what you want and they think you're after the quickest way to being free of inflammation. I would have suffered with the inflammation a little longer to get to an internal pouch personally.

Too risky with steroids, I don't think so. Many here have had pouches constructed while on steroids. Healing takes longer.

Well, do you want to be free of the ostomy bag? If so, go elsewhere and don't let this person operate on you.

If you want to keep the bag and get rid of the inflammation, then go for it, but really, to 100% get rid of all the issues, they should remove the anus and sew up the backside, which would make future reconnect impossible.

If you can go to a surgeon with experience in j-pouches, regardless of steroids, you should be able to get this pouch built and the rectum removed. In the 8 weeks following, you would be able to begin tapering off steroids and get reconnected. I had a 3 step jpouch and I am doing great. I would be LIVID if I had 2 surgeries and I was still 2 steps away from a jpouch. I don't like this surgeon, see a person with A LOT of experience in jpouches (if that's what you want). Don't take no for an answer, get the referral, even if you have to go to a GP.

Ileo is not a bad option, it just depends on what you're comfortable with and what you want.

I've been on remicade for two years. No side effects yet. Sife effects are very rare, but serious if they do occur.

Dr Batman PhD said...
Had my first infusion of Infliximab yesterday, so far so good. Still bleeding and in pain though, I'm due for another flexi sig next Wednesday to see how it has affected me.If all goes well then i can go ahead with a planned surgery, if not then emergency surgery time. I'm still on the injection steroids also.

Most people don't see a change till after the loading doses of Remicade, it could take two or three more to see good improvement

It seems like you don't have a say. You should be the person deciding what happens to you. Unless it's life or death and you need emergency surgery, which would have been done already if it were the case. I don't understand why they are going to leave you with no option for a jpouch when the option should be available if you want it. Seems crazy to me. Not that the ileo is bad, you can live very well and comfortably with an ileostomy, but if you want an internal pouch, they should help you get there, not make it harder...

Dr Batman PhD said...
I really don't know. I need t discuss it with the doctor when i see him again. So far no improvement, still the same amount of bleeding, still the same amount of pain :(

But i've been reading more and more around this, at first i wanted a jpouch, wanted to be "normal", but even the pouches can have their own troubles. Now i'm even more confused than ever, not sure what it is I want anymore...

What ever happens, and which ever one it is, i think i'm ready to accept either. I would love a pouch, at my age it would give me confidence again, to go out and be able to live my life with no worries of a stoma. But on the other hand, what if it just causes more problems for me. It's all so risky.

There will always be risks associated with any surgery. I just had step one of my JPouch back in October. My sister also had emergency surgery 22 years ago to remove her colon and got a JPouch. She hasn't had one issue with it and hasn't taken one med or seen one doctor since then. I'm supposedly at a higher risk for pouchitis but with how I was prior to surgery with my UC, my quality of life made my decision for me. Surgery is a huge overwhelming decision. I know it took me a while to decide until my quality of life kept declining. I was a prisoner to my home and my bathroom. Even people who say they have constant Pouchitis, it's nothing compared to life with UC.

Dr (my gastro consultant) just came to see me and said he's still tying to get the surgeon (who does pouches/reversals) to see me and she's on call tommorow and this weekend and he'll try to get her to see me tommorow morning. He said the flexible sigmoidoscopy shows the hydrocortisone (steroids) and Infliximab had had minimal changes. He thinks I need my stump removed which will mean no more reversal in the future, or at least will decrease the chance of a successful reversal considerably.

It's a tough one, if you want the possibility of a reversal then follow-up on it, it's your body and ultimately your choice. There's nothing wrong with having a stoma indefinitely. It's all a matter if what you want. Both routes have risk of complications, no one can promise you they're won't be in either route.

Wishing you all the best. I hope things stabilize for you so you can have the planned surgery in March. Stay positive!