One year jpouch anniversary

I am really sorry you're still so unhappy. You know, 10x a day is not uncommon for a jpouch. The weird part is all the pain you describe. When is the last time you saw your surgeon? I am coming up on 6 months and I've been told I need to see mine every few months for the first year (i will go for my second in a month or so). He did a little scope to take a look at my 3 month follow up. I would think you would have this every few months for the first year and maybe they would have been able to see what's going on? If it's pouchitis and it's chronic, you will need to treat it indefinitely I believe :( I hope you can get some answers when you see the team at CC.

Everyone knew I had issues before surgery, I wouldn't eat when I went out. Since surgery, I live normally. I don't think anyone would ever consider that I have some kind of bowel issue.

it's interesting how people have such varied results. I don't consider my results to be perfect, but they are worlds better than I ever was while flaring up, or on UC treatment. I hated being on all those drugs too.

I'm puzzled as to why you don't see a return to ostomy as a viable option? Being pain free and able to eat has made my life worth living again. You're young, and it would (hopefully) be a long life with a bag, but if it's the best option...... As I understand it, Bo Shen is the World's leading authority on the pouch. I hope he can fix things for you, but if not, you will need to make a big decision, life with a defective pouch (and as I say, you're young, so should be a long one) or a return to ostomy.
I have my ups and downs, ostomies aren't the easiest thing to live with, but it beats the year of misery that awful pouch caused me.

Solomon, my heart really goes out to you. I see you are very young and can understand why you didn't want the bag. Was your main problem proctitis? That was what I suffered with for twelve years, ulcerative proctitis. All those years, the disease never traveled into my colon. Other than minor diverticulosis, my colon was as clean as a whistle. My rectum was a mess. My GI doctor just could not find the right meds to deal with my disease. The last two years I suffered, 2008 to 2010, were horrible, my quality of life sucked. I couldn't go out of the house till the afternoon. Every room had a port a pot because I couldn't make it to our bathroom. The meds were killing me. I was prednisone dependent and it gave me diabetes and uncontrollable high blood pressure. Since my GI doctor refused to send me to a surgeon, I sought mine out online. My surgeon was head of colorectal surgery at Univ. of Pa. Hospital in Philly and trained at the Cleveland Clinic and had over thirty years experience. He told me at my very first visit I was NOT a candidate for jpouch. He also explained that when the rectum went, with UC so must the rest of the colon. Well, being 63 yrs old at the time, I didn't give a rat's behind. The idea of having a bag over my poor quality of life seemed like a Godsend. So, in June of 2010, I had a total proctocolectomy with end ileostomy. Here is the clincher. My surgeon left the anus..ugh. In 2014, I started to feel pressure inside the anus. Since my surgeon retired in 2013 (just my luck), I decided to find one here in Jersey. Well, the disease is back inside the anus. He did extensive biopsies, there is no dysplasia or cancer, thank God and he does not recommend removal of the anus. I tried rectal meds, but I think they cause more irritation than anything. Right now, I feel like I am caught between a rock and a hard place. He told me it would be too much of a surgery for me to have to go through even though my overall health is excellent. Also, there is NO guarantee I will be better off after the anus is removed. I may still have issues.

I just want you to be aware that IF you go back to the bag and your problem was proctitis...have them remove the anus. Don't take any chances with that end part. Best of luck to you and I do hope you find relief.

TMC said...
I have now been seven months since my J pouch surgery and it has been a trial as well. I have had strictures three times and had to be dilated. The pain, the spasms, and the inability to empty have made the Jpouch much more of a challenge than the bag ever was! Everyone says that it can take a year, so I haven't given up hope yet, but I have wished for the bag back almost every day.

Have your strictures cleared up for good now? I had one but was lucky and only had it dilated once. Were your issues related to having the stricture? I know they can cause a host of symptoms.

There is a kit/tool that you can use at home to self-dilate, depending on where you strictures are. I've only been dilated under sedation.

I've also found that after my biological (cimzia & stelara) injections that its usually easier to empty my pouch, I'm not sure if that is strictures or just the inflamation in my pouch.

Oh Solomon Seal, I am so sad for your current state. We were in the same boat for a long time and my daughter's surgery was right when yours was- I remember typing to you while in the hospital. She had such a good outcome. Yesterday was her 1 year pouch scope and it was all clear. She has had two bouts with a twisting intestine/blockage and will have to have a small bowel follow thru next week to see about it, but the pouch looked clear of inflammation. Maybe your scope will inform and give direction on how to proceed.
I want you to go back to CC and talk this thru with the pro's there. Surely they can help improve this- don't give up. Pain should not be a part of your routine, you are too young to give into this DD. hugs and hope-keep fighting.