I’m 1.5 years post take-down and I’m still having around ten BMs a day. These are mainly during the day.. I sleep through the night most nights. Pre-surgery, I was going 15-20, so this is an...
I slowly, without trying, lost weight over the five years I had UC. by the time I had my first step of jpouch surgery (and after 11 days in the hospital) I had lost close to 25 pounds. I had some to...
Not sure if this answers your question.. but i always had problems holding suppositories and enemas in. I’m talking seconds not minutes. But, I’ve never had an issue with my pouch and the muscles in...
I went to Disneyland with my husband and 2 young kids. I had to stop often for bathroom breaks but the great thing about Disney is that restrooms are abundant and once you’re in there.. there are...
I’m almost a year out from my takedown. Things are going pretty good and I don’t regret my decision for a second. I still have frequency and maybe one trip to the bathroom overnight..but the urgency...
I don’t know too much about UCLA’s program... but if you’re in northern CA you might consider UCSF. I was treated through the IBD clinic there and thought I received good care. I was refractory too...
Mak37- I had my reversal last fall and I have to say that while I’m happy with my decision- I can totally see now why people are OK living with the ostomy. If you don’t have any skin issues and you...
Adrina- you should be seen right away even if it means going to the ER. Tell the dr everything you posted here. An ethical physician will treat you and address both physical and emotional challenges....
Wow! I just realized today is exactly one year since my colectomy (step 1 of 2) It was a quite a year. Things aren’t perfect, but I am SO glad I did this surgery....
Adrina- I was not doing well at that point after takedown either. I was having a lot of pelvic pressure, terrible frequency, butt burn and intense itching. I was pretty miserable. I think it was...
Dr Mahadeven at UCSF. I’ve heard there are good UC specialists at Stanford too....
Drama free is a good way to put it NSSG!...
I’m coming up on a year since my step one of two. Things are pretty good although I still have a few lingering issues. But life is soo much better than pre-surgery. I still have frequency but no...
Notsosicklygirl has theee most thorough list of questions! Also agree with her about recovery- your line of work sounds more physical than mine. I took six weeks off work and my job is pretty mello....
My GI recommended surgery roughly two years after diagnosis. It seemed too fast and I resisted the idea for another 2.5 years before i finally agreed to it. I went to the surgeon recommended by my...
Good luck tomorrow. Hopefully it’s your last hospital stay for a long while!...
Do these risks apply only to the time you’re taking the drug or after you’ve stopped taking them? Wondering not just for xeljanz but for UC drugs in general....
This was my experience with Aetna- when my doctors first prescribed Entyvio, Aetna denied it. I then went on Humira, Remicade and 6mp. All failed. About 18 months later she tried getting entyvio...
Congrats on your milestone! Glad to hear you’re doing well. And thanks for posting- as someone trying to navigate post takedown- it helps to read positive posts like this. 😊...
Good question 3TC... I had a pouchoscopy about a month post takedown to see about the pelvic pressure-and there no signs is inflammation. So I don’t think I have pouch/cuffitis. I’m just hoping the...
My fellow jpouchers: has anyone tried pelvic floor physical therapy post takedown? I’m about three months post takedown and I’ve had two sessions. It’s supposed to help with the pelvic pressure...
Yes! I donated an entire box of supplies to FOA, Friends of Ostomates Worldwide. From the looks of their web site and Facebook page, they do a lot of good work. They ask that you include your name...
I’m about 6-weeks post-takedown and having very loose BMs. When I first came home from the hospital, I took benefiber as directed from my doctor and it helped a lot. I still take it but it doesn’t...
I’m sorry to hear you’re having a rough time. I was in bad shape the first week I was home after the first surgery. I was weak, had sharp pelvic pains and the incision pain was killing me. I took the...
I’m about 5 weeks post takedown. I had my jpouch done in 2 steps. After my first step, things were good the first few days but then had illeus (intestines don’t wake up). Had to have an NG tube for...
NSSG- no real answers about the bladder pressure/pain from the surgeon or GI. The GI did a pouchoscopy and noted a structure which she thought may be contributing to my bladder pain but wasn’t...
I’m doing OK but Still struggling a bit. I know it’s still early (4 weeks post takedown) but I’m dealing with some things that I wasn’t prepared for- like constant bladder pressure. That issue has...
Hopefully this is your last hospital stay for a long while! Best of luck to you....
Saw the surgeon today. She seemed a little perplexed by my symptoms. She ordered a CT scan w/enema. I was able to get in right away for that. Dr wants to rule out an abscess that might be putting...
NSSG- the culture came back as negative for UTI even thought I thought for sure I had one. I have an appt tomorrow (Tuesday) with the surgeon. Hoping to get some answers and a prescription that will...
It’s all the time and seems to be worse when I’m sitting or laying down. I’m wondering if the jpouch is putting pressure on my bladder? Not sure if the bladder is actually located near it. I was also...
Seeking some advice: I had my takedown surgery about 10 days ago. Went home from the hospital after a few days, then started to have feeling of the urge to pee all the time. I thought it was a UTI,...
NSSG- tomorrow marks one week since takedown surgery and I think I’m doing OK all things considered. I only spent only 2 days in the hospital which totally shocked me. (Spent 11days for step for 1...
Question for you jpouch veterans: I’m 1 day post op from takedown surgery. (Yes I scheduled it the day before thanksgiving) What are the doctors looking for before they allow discharge? Is it just...
My GI recommendated surgery about two years into my disease. I had failed everything available to me. I resisted the idea for two years because I was scared of the surgery, recovery and the bag....
Wow! your story sounds a lot like mine. Suffered nonstop flare for four years. Tried ever drug out there... before finally agreeing to 2 step jpouch surgery. I wish I had a 47 hour hospital stay tho!...
I’m glad to hear you’re doing well and are navigating life post takedown. I’m scheduled to have my takedown in a week, so I read your post carefully. It gives me hope that things are good on the...
NSSG- I hated it too! I had it after my 1st of 2 surgeries— all 11days in the hospital, then about a week at home. Could not wait to get it out! Adriana-I’m surprised they took it out so soon. It...
I tried cbd oil capsules for about three weeks. Didn’t see any difference. I bought it at a dispensary. I live in CA where medicinal and recreational is legal....
I have Aetna and was initially denied. It was later approved on appeal. This was earlier this year before it was approved for UC. I think you have to fail at other drugs before insurance will approve...
I tried it for a few weeks and didn’t notice a difference. Maybe I should have kept it up longer....
It’s funny- the stoma was the thing that I feared most and it turned out to be no big deal. Best of luck to you!...
Surgery is a big decision. One I put off for a while but I am now 2 months out of my step 1 of 2 and can say I Feel like a functioning human again! I didn’t get here overnight. It took a few weeks to...
How long did you stay in the hospital after takedown surgery? Was it longer/shorter than expected? I’m scheduled to have mine in mid-November. For my step 1 of 2, I was in the hospital 11days. Hoping...
Thank you for sharing this! I’m nervous about my takedown surgery in a few months. But seeing a post like this reminds me that it’s a marathon not a sprint....
I have Aetna POS (like PPO) I took Xeljanz earlier this year as a last ditch effort to avoid surgery. I had failed a number of meds (humira remicade, enttvio you name it!) Initially Aetna denied it...
Wow I really needed to read your post today. I’m currently in the hospital after step one. It hasn’t been easy but when I read posts like yours it gives me hope! I’m so glad you’re healthy and doing...
Way to go- you got this!...
Thanks everyone! Going to try walking more today. So far, so good!...
Well surgeey step one is done! I’m one day post op and boy am I sore! I know that will subside along with the pain. The ostomy isn’t as bad as I feared. Just glad the surgery went well and is over!...