reed-
I am so sorry you are going through all of this. And I know that you having to make these kind of choices is very difficult. I was fortunate that my first surgery for UC was emergency and I had not decisions to make. But I have had a few later on that were left in my court to decide. Its not easy.

I am happy to hear you have a surgeon that you can speak openly with. And glad you discussed your quality of life issues with him. Please though, remember he is not living this. You are. There is no reason you have to be a martry and try extraordinary measures to save a pouch. I think its hard for the doctors to truly understand what we go through.

If you are as unwell as it seems, you probably do need to be in the hospital. Things happen so much faster there too. If not, please make sure your bloodwork is being checked and your nutritional needs are being taken care of. You cannot think straight if you are not nourished properly.
hang in there and good luck

Reed,
So sorry for all your pain and troubles. I hope this turns around for you soon.
Best wishes.

Some good news for once! After being on antibiotics for a few days I am actually feeling better and trying to evacuate is almost back to what it was before this episode (still manual help needed but doable temporarily). What I don't understand is how antibiotics could make a big difference in a short amount of time? I swear I'm not crazy and this has been the most miserable month and a half I've had but now I take some pills and things get better? Not trying to complain, believe me. I'm just trying to figure it out.

Could pouchitis have caused it to be so difficult and not be able to eat, etc.? The fissure plays into that as well and it's definitely better after the Bella Donna suppositories I've been on but before the antibiotics, I was still pretty miserable. Five days later I am almost feeling like myself again.

Regardless, I know I've said this before but THANK YOU SO MUCH EVERYONE! Humira is supposed to start as soon as it gets in sometime this week so maybe that will REALLY turn things around. I'm a bit more hopeful now I have to admit.

Glad you're doing better! Hope the Humira does the trick, I'll probably be starting that in august. Hope the antibiotics keep working well for you.

I'm glad you are feeling so much better!

How are you doing now? I hope you are doing better. I can relate with you. I have been going through something very similar. I have been going to the CC and Dr Shen said I have afferent limb syndrome at the top of my jpouch. I also have an ulcer and tissue buildup at the bottom of my pouch caused from straining. He prescribed me the lactulose and belladonna opium suppositories. It seems to help. I also have been married to the toilet and am completely exhausted. I try to go and only a tiny bit comes out, and I constantly have the urge to go. I also cry from the pain and the frustration of it all.

I went to the CC a few weeks ago, and Dr Shen wants me to do the meds first. It is unrealistic to me though because I don't have prescription drug coverage. It's over $1000 a month! The next step would be biofeedback balloon therapy which sounds excruciating. I don't think Dr Shen realizes how painful it is, to even put a suppository in. I am scared about that treatment. The step after that, he said would be adhesion surgery?? I am so frustrated because I think how in the world would that fix my problem?? I have to email him to let him know what's going on. I keep on keeping on somehow.

regina-
I want to suggest for you to somehow get a hold of Dr. Shen. You need to tell him exactly what you have told us here. Also, sometimes he has access through sales reps, etc... to get samples, freebies. He helped me get a a large volume of a prohibitively expensive prescription nutritional supplement by putting his sales rep in contact with me.
Can you schedule another appointment with him, write down all of your issues and concerns, and go over them with them. Sometimes in initial appts he is so fast that it is hard for everything to be processed.
good luck.

My daughter sounds so similar. She was having terrible pain at the connection site, and then began having problems emptying. MRI appeared normal. Biopsies showed pouchitis but she only had one actual ulcer and otherwise her pouch looked great. The pain had become very debilitating and the only thing that would help is oxy. Their suggestion was pain rehab!! They couldn't find an obvious reason for her pain so tell her to just accept she has to live like this and learn to deal with it---NOT happy about that one bit! I had to ask for abx for the pouchitis we were told they don't usually treat because some inflammation on biopsy can be "normal", but because she has now been bleeding they would treat it. Well in just ONE day the bleeding stopped and soon the pain practically disappeared. She is also since been dx with pelvic floor dysfunction and is going to try the biofeedback for the emptying issue. We are really hopeful that it will help.

Interestingly she got a second opinion and it was thought she had a sinus tract that was causing the pain according to their MRI. The second opinion was suggesting surgery to fix the sinus and redo the pouch. Very scary proposition but we were desperate to help her feel better and were about to move forward.

I find it very interesting that the antibiotics could make such a drastic improvement and so fast as well. I asked if she could just continue on them as we are afraid to go backwards and she is finally feeling somewhat functional. That is the direction for now--Continue antibiotics and start biofeedback for pelvic floor dysfunction. PLEASE let this be the answer!!! She just wants to continue her college education.