Reply to "I can't do this anymore"

Hi!

I'm a bit late on this, so I hope your life has improved by now. First, you have every right to go back to your surgeon. She knows more about the pouch than the GI will, though the GI doc is nicer. It's her mess, and she knows it, which is why she is probably blowing you off. 

Most FAP patients do really well after j-pouch. I'm an IBD patient with one. I'm not doing well, but it was because of a terribly made pouch, not because of my eating.

Different people do well with different foods. Do what works for you, but write down what does and doesn't work, and change only one thing at a time so you know it's really helpful. 

Low fiber, high fiber... depends on the patient. I do know this--soluble fiber is always better after pouch than insoluble. This slows down the BMs and makes them easier to pass. I gave up broccoli, asparagus, cabbage, and kale, but I can still have cauliflower, potatoes, fruits, and less fibrous veggies.

I can't touch whole grain wheat for some reason, but many people can. White bread and white rice are actually what help me. Very different than what others wrote, and that's okay--the reason we aren't given much guidance is because what works for one may or may not work for another. There's no strict recipe for success; more of a formula. 

In the end, who made your pouch is the most important thing to success that I can find so far. The second thing is, what is the underlying disease... IBD patients are much worse off than FAP ones, according to doctors, because the underlying autoimmune disease keeps rearing its ugly head.

Hang in there. But don't let your surgeon off the hook--make her image you or do whatever it takes to explain what is happening. 

I had a terrible surgeon--he lied and told me he had done plenty of these. Very few people should be doing this surgery--it is rare now because of advances in medications. So the experience is concentrated in major centers.  And the best outcomes occur there. 

I wish I had known this when I had mine... but I'm paying the price. Craptastic surgeon who did not address all the complications of his poor work. Now I'm still paying the price six years later--have to have a new one done. 

Butt-burn for me happens with spicy food or excessive diarrhea. I live on lomotil and imodium, and even old school tincture of opium helps slow things down when the others are not enough. But I found avoiding spices (argh) and eating certain foods made me more functional; I have been working for the past six years, full time, as a doctor. 

Not a colorectal one, mind you!!!

My pouch failed spectacularly a year and a half ago, and I've been living with >20 bms/24 h, mostly at night (so no sleep). Same issues as you describe--can't always empty, have to go again suddenly, perianal rash and fissures. 

Calmoseptine and baby wipes have helped, but it has been miserable, no lie. I love the sitz bath idea--have to do that later. I also got some lanacane cream (lidocaine ointment), which I apply with a q tip when I get the rash, to numb it up before I use the calmo. Been thinking about a bidet, but I don't get how it dries just yet... 

One of those cheap condiment squeeze bottles (I got a six pack from Sams, but you can get them online) is a great way to have your own irrigator. I only use it externally--no need for enemas--but when too irritated even for baby wipes, that thing can squirt right in the right place to help me clean.

I have a friend who had a pouch a few years ago by a real expert, and who has no problems, takes no meds, and even had a child afterward. She is living a completely normal life. I envy her--and I'll never be her--because she went to a high volume, high quality surgeon for this. (Her father is a doc and flew her up to NYC for treatment instead of keeping her local and trusting anyone where she lived. I wish I had done that for myself, but it's hard to make good choices when you are so ill with UC that you need the surgery.)

That may be your issue as well--a good surgeon would do anything to make sure you do well afterward, not just blow you off. If she mismanaged your surgery, you are the one who suffers. Complain to the state medical board if she doesn't help you. She can't create problems and just walk away. 

I went to someone who did just that. I let him go at the time because I was so tired. I will report him to the board, though, and he will have to answer to someone for his hubris, even if it isn't me.

Now that I have a failed pouch, I found the guy with the most expertise to fix it. He has done more revisions than anyone else. He did think he could save my pouch--I was elated. 3 stages, 9 months.

Unfortunately, I am 10 days out from surgery, and it did not go well. Stage 1 was just supposed to be EUA and laparoscopic ileostomy (ugh), but he got in there and found an unholy mess, and had to open. 2 leaks, twisted pouch, so many adhesions... he can't save it.

Now my choices are permanent stoma or second pouch, which can never be as good as the first, because it has to be higher up in the intestine. 

I have so many skin problems with the stoma that it's completely disastrous to imagine a permanent stoma. But a loop isn't as good as an end stoma (the permanent kind), so one day it may be all I can get. 

Am I depressed? Hell yeah. Looking back, a failed pouch with all the diarrhea and the bum problems may have been worth living with rather than going through all this. However, I've done step one now for better or for worse. So I'm giving all 3 surgeries a try, but I'm under no illusion this time that things will be easy.

Anyway, I wish you the best of luck. I hope yours turns out better than my experience has. If you still don't improve with the means people have mentioned, and you keep getting abscesses, you could have a chronic pouch leak. If so, you need to see another surgeon--someone good this time. Hopefully your first pouch can be saved.

But--and I say this from my own sad experience--don't rely on your GI doc and nurse, just because they are nicer. This is a surgical problem. Make an appointment with your surgeon. Be firm but calm. See how she responds. The least she should do is offer you medication management, but the best is probably imaging to look for a leak (gastrografin enema or a pelvic MRI).

What we patients have to know is that once a surgeon operates on us, they 'own' us as far as any problems from that surgery. Trust me on this. If they try to disown their responsibility, you go to someone better (academic referral center) and you call a good attorney.

Best of luck!

 

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