Hi guys. So, long story short-UC when I was 16, severe, never responded to meds. Suffered 7 years until 2005 when I had Jpouch surgeries (3 step) to "cure" me. Complications: Blockages, stricture at anastamosis site requiring surgery, twisted pouch requiring surgery to "tack" into place, Crohn's diagnosis. Now on weekly Humira, Xifaxan, Canasa suppositories. Still have moderate inflammation. Prometheus test still says UC, not Crohn's. New surgeon not convinced I have Crohn's-thinks maybe the worst case of chronic pouchitis he's ever seen b/c after 7 months of tests it is determined that my anus doesn't allow me to empty properly. Maybe b/c of muscle spasm, maybe b/c there was too much rectal cuff left in original surgery. My options: Continue to treat pouchitis although current treatments aren't working and not much else I can do, so basically suffer with whatever this is OR try to have the cuff shortened and hope that will help me crap better. If not, then ileostomy. This will be my...10th surgery? Something like that at age 27. What do I do? Do I keep trying? I am so so so exhausted with something always being wrong with me. I have no hope that this will work although I try to dredge up whatever is left of my reserves. What would you do?

I put up with the cronic pouchitis for 2 1/2 years. It was just like having colitis again. My pouch is still in place, just disconnected with an end ileo. Day to Day life couldn't be better. I still have to watch my hydration and occasionally get obstructions, that would happened with my j-pouch too. If there is a medical breakthrough, I'll give the j-pouch another try. Good luck...

Well, it's definitely not that bad for me-no blood, no writhing pain, but it's no fun either. I spend most of my life at the doctor or getting tests to find out "what's wrong now" and I'm mostly just sick of that. I had this surgery b/c I wanted my life back-now I just feel like I get teased with a few decent weeks/days/sometimes months until the next disaster. Plus, I think I've been sick so long that I have no idea how it feels to feel good. How was the reversal surgery for you compared to the others? I can't lie, I am not thrilled about having another major operation and dealing with the bags again...However, pooping on myself and having these constant anal spasms isn't much more enticing.

It sounds as if either decision involves more surgery. I wouldn't put much faith in the Prometheus test results; according to my surgeon the accuracy of their tests is not that great. If you opt for a revision of your pouch I would seek a very experienced surgeon who has lots of experience with revisions. Maybe you can get a 2nd opinion from a highly qualified CR surgeon? It's just possible that all of your problems can be corrected in the right hands.

Sue

That's exactly it-seems that no one agrees! Which leaves me confused and frustrated. All the docs I saw before I moved to the West Coast were sure it was Crohn's, all the one's I've seen out here don't think so. The thing is-all great docs! Yet they have pretty much contradicted each other. To be fair to the new ones who think I might not have CD-Shhesh, with all the crap I'm taking shouldn't I be in a little bit of remission if it were Crohn's?
New surgeon thinks the real problem is that for some reason, I just can't poo right. I had a defecating pouch-o-gram where they basically pumped me full of barium and videoed me crapping it out. I watched the video and I could tell not even a fourth of the barium was expelled and it felt like I emptied as much as I could. My surgeon said that on the video it didn't look like my anus opened properly to allow the stool to exit. I can feel the rectal spasms and it always feels really "tight" down there although there is no stricture now (there has been in the past). So, I dunno. There is always something completely bizarre with me! I laughed and said, "Oh, after all those years of trying to not be 'type A' turns out I am literally anal retentive!" So, surgeon thinks that since I have stasis (stool doesn't get emptied from my pouch fully) I basically have a constant infection from that. But, how to make me poo right? He thinks the pouch looks okay (although it is too big from when it stretched out during the first stricture) but wants to re-do the rectal cuff which had cryptitis and didn't "look normal" and had more left than he generally likes to see. I appreciate that he is honest with me about basically just making an educated guess rather than being like, "We KNOW what this is." And I like that he took the time to run a gamut of tests to find some evidence rather than just being like, "Oh, it's this. Let's just medicate her."
While it's comforting to hear what's wrong with you in a way, I don't think my former doctors fully explored all my symptoms in the way this surgeon has. In a way it makes me nervous b/c he can't tell me one way or another whether this next surgery will work, but on the other hand, at least he's being forthcoming. So, you can see why I'm confused, perplexed, and frustrated. I feel like my body is doomed to fail and I really don't want to think that way, but I am just ready to feel better. At this point, I don't care so much about having an ostomy again. It's nice not having one, but I don't think it's worth dealing with my current situation. And it's not like I haven't tried. I've had this thing 5 years-through it twisting twice, blockages, strictures, maybe CD, ya know? It's not like I haven't tried to make you happy, Jpouch! Work with me here!

Liz, feeling better is always the goal. I know you are frustrated and feel that you are fighting a loosing battle, but just hang in there and keep fighting I'm sure you will find that peace and health you deserve. I had UC for 5 years with very little respite from the pain and discomfort. Even now the the J pouch I'm working on recovery and have days when I feel that it will never get better.

Good Luck

Hi Lizz,

Hope things work out for you!

For the first year or so after surgery I was constantly strictured. That led to chronic pouchitis as during that time I was on antibiotics for an entire year - a double edge sword. I needed the antibiotics, but they made it harder to empty due to a constipating effect. Then one day I had a dilation by a new surgeon at the hospital and it worked! That leads me to believe that the theory you describe of not emptying properly is causing all the infections. Makes sense.

You may want to check Cleveland Clinic for a thorough second opinion. It is often good to have someone see you without any bias. Just let the surgeon review all the test results, symptoms, etc and see what they say. Or many people seem to be happy with an ileostomy. I never had one as I had a 1-step surgert, so I cant give any advice on that.

Good Luck!!!!!

Hi Lizz,

Do you have any updates? I'm having similar issues...

Was diagnosed with UC in 1984...electively chose to have my colon removed in 1991 with the J-pouch procedure. Complications with pregnancy caused anal fistula in 2003 that is still active. Recently was hospitalized after outpatient procedure for fibrin glue & rectal dilation caused anal abscess.

That hospitalization was a couple of months ago & I'm still having a lot of pain & now difficulty emptying also. (very unusual, since it's usually the 'opposite' problem) Rectal dilation at home doesn't help. Just feels like the whole anal canal is smaller/inflamed. Dr prescribed anti inflammatory suppositories to no effect. Having flex sig tomorrow to check for Crohn's, but still doesn't address the defecation difficulties.

Very frustrated & tired of feeling bad.

Actually yes! Doc thinks my prob is muscular after considering my symptoms again and doesn't want to jump into surgery yet. I am starting physical therapy for my anus (who'da thunk it?) in a few weeks. I have also been taking muscle relaxers, upped the Xifaxan, and am using an anal ointment with lydocane in it that feels wonderful! I think the antibiotic increase helped most, but the muscle relaxers make a difference in the normal "contracted" feeling I have in my low back and the left side of my anus. Didn't realize how tight I was down there until I took these and felt relaxed. I also had steel cut oats for breakfast yesterday and had the most normal and satisfying BM I'd had in a long while. Since I think the antibiotic is helping the inflammation and energy issues, I have been doing some light yoga which is nice too. I think we are trying biofeedback to try to get my muscle to relax during PT. I guess it's the levator muscle which can spasm and make it difficult for the anus to relax and empty. I'll let you know if I have any luck with it.

Hey Liz,

Glad to hear you may have found a non-surgical solution. Just curious - who is your surgeon in Portland? That's where I had my surgeries, with Dr. Frankhouse. Amazing man!

Wishing you all the best!
Becky

His name is David Parsons, at Kaiser. I had my surgeries at Vanderbilt in TN before I moved out here w/ Dr. Paul Wise. Also amazing!

Lizz, I have the same surgeon. Haven't had my takedown yet, but so far he's great!

OH cool! I like him a lot too and have heard nothing but good things from the nurses, etc. in the hospital.

Hi Lizz...I haven't been here in a while and started a week or so ago trying to "catch up" on things. Are you still on the Humira and other assorted Crohn's drugs? I know that last year you were struggling with (I think) weddings, mothers, etc. And you were going a little crazy.

I'm sorry that your health is still a concern, but it sounds like it's getting a little better. It's always depressing to have to constantly go back to the doctor for more diagnosis, tests, etc. I've been going to doctors for 6 months now to figure out a chronic cough. I've seen 4 already and no one will help...I just keep getting passed around. It's frustrating. Not anywhere near where you are, but I understand where you are. You just want to feel human and get your life back. You want an end in sight...and there never seems to be one. It's enough to make you scream. I talked to a lady a while back who was considering j-pouch surgery and we both agreed that when you are so sick and have so many drugs and doc. appts. you feel 98 instead of young and twenty something.

Anyway...I just wanted to let you know that you are in my thoughts and I hope you continue to improve. I know what it's like to have to dig into the bottomless well of reserve to find more energy to combat what life throws at you. It's exhausting. Good for you with the Yoga...I just started and I love it. That should really help.

Take Care
Susan

Thanks, girl. Still on the Crohn's stuff. Doc was thinking/hoping that maybe I Just had a horrible case of pouchitis, but more tests re-confirmed Crohn's. It's up and down. I feel okay when I'm on an additional antibiotic (additional to Xifaxan) like Augmentin for a sinus infection, but surgeon says I can't take that long-term. Mostly I'm just tired a lot-crampy stomach pain, go to the bathroom a lot, diarrhea, etc. Blood off and on, but not as much as before the surgery. It's frustrating for sure. If things don't improve with PT to get me to empty properly, may have to go back to the ileostomy. Not totally opposed to that except that surgeon suggested amputating pouch, which it kinda scary b/c I'm not thrilled with the idea of losing more intestine. We'll see! Thanks so much for your comments. Such a great group on here! I wish you luck with your coughing issue. Lord, can't we all just be healthy?