Hi! Long story Short I exhausted all the meds and I had to have J pouch surgery. This was 10 years ago. Remicade was pretty much my last shot and I failed that. I know surgery is terrifying. Believe...
Posted Today 11:52 AM (GMT -5) I hope you have continued good luck with the xeljanz. That one must have come out after my surgery. I will look up that thread and see if I can add some help. I horse...
Hello everyone! I haven’t been here in a long time. With this ridiculously crazy year we had I actually just realized I had my 10 year J pouch anniversary! I can’t believe it’s been 10 years already....
I suffered for 7 years with severe UC. It came on fast and strong and never let up. I went through all the remedies that were available at the time. All failed. I didn’t have much choice. I had j...
I don’t come to this site very often anymore but I did last week and saw your post. Happy to read you’re home now. Scary stuff out there! Be well!...
Sending healing thoughts to you for a full recovery. You can do this fellow j pouch warrior!...
Congratulations and happy to hear you are doing well. Today marks 9 years since my takedown surgery. I can’t believe it’s been that long! Life UC free has been good! Continued good health to you!...
No, it isn’t necessarily a cure but it can help people live a better life when they are sick and suffering from severe UC that can not be controlled. I don’t know where I’d be right now without...
thanks! Having a great surgeon is EVERYTHING! I had to travel a bit of a distance to go somewhere I trust. Would never be able to have a surgery like this in my town....
No, I’ve not had pouchitis. I had some issues with an abscess developing immediately post op from my first step. That was pretty rough as i had to be re hospitalized and have a drain put in. Then...
glad to hear you’re doing well. My sister has a j pouch too and she’s like you only 1-2x a day. I wish. Lol. But it’s all good going more times a day and not being sick!! Be well....
It does take some time. You’re still pretty fresh out surgery. It took me several months to feel like myself again. The one thing I had to deal with was a stricture after my takedown surgery. Scar...
thanks! No, things have been normal for me since the colon removal. Nothing else has popped up. (Knocking wood!!)...
Thank you! bathroom trips a day are average 4 to 6. Sometimes less than 4, sometimes more than 6. I stopped counting years ago to be honest. It’s not like going to the bathroom with a colon (sick or...
congratulations on getting through the surgeries. :) No, I’ve never taken any pro biotics but I do enjoy eating yogurt so that certainly doesn’t hurt. No Imodium. I took that when I had my temporary...
I haven’t posted in a really long time. I just realized today I missed my 9 year anniversary of my J Pouch surgery at the end of June. I can’t believe it’s been that long! Just here to say that it’s...
I went the Biologic route when everything else failed and didn’t have any luck with that either. I had j pouch surgery 9 years ago this month and it’s been the best decision I could have made. So so...
No one likes to take prednisone but if your doc said you’re that inflamed, I would follow his orders and take it to get that inflammation under control....
Surgery is a blessing if you’re one of those people like me who failed every medication. So having been through it all, I will recommend surgery every time for someone who is the right candidate for...
I had zero quality of life left. And when you cannot leave the house without having an accident, it’s time to take a hard look at what options you have left. I chose j pouch surgery because I wanted...
Everyone is different. I know people with j pouches who have watery stool all the time and that’s their normal. Then I know people who have semi formed stool and that’s normal for them. (You’ll never...
Happy anniversary! I’m coming up on 8 years ..... can’t believe that! Things have come a long way and people do not need to be so afraid of this procedure if they truly need it. It’s been a...
It’s complicated. I consider myself cured because I’ve been symptom free since my j pouch surgery. But yet medically, I’m still considered to have IBD. Once you have an autoimmune disease, you have...
You have a good list there. I never ended up needing anything other than the Calmoseptine ointment. I was fortunate and had an easy transition. Wishing you the same! No matter what though, usually...
Be patient with yourself. It takes time to heal after such a complex procedure. You’ll notice improvements as the weeks/months go by. Soon it will be a distant memory. I can’t believe I’m coming up...
I haven’t posted in a long time so I thought I’d stop by and say hi. My j pouch surgery was 8 years ago this past June and my takedown anniversary is coming up in October. Everything has been...
Yes, I recommend it if you’re a candidate. Yes, to me it was TOTALLY worth reversing the ileostomy. For me emptying the j pouch is a quick and easy as urinating. Just sit and go. I go 4-6x a day....
Step 2 of the process is the most involved step and it’s a HUGE procedure. It takes time and lots of patience on your part to heal. I remember when I was in the thick of it and feeling like it was...
If nothing is working....seriously consider it. I was in your same predicament when I completely and utterly had enough. I opted for j pouch surgery. BEST THING I EVER DID. It is not easy and you...
I changed the bag and wafer daily....I couldn’t stand it. That loop was the absolute pits. I’m impressed you’re getting 3 days out of it! Bummer about the incision. I had a c section style incision...
oh please don’t feel bad for me! Having my colon removed and getting a j pouch was the best thing I ever did! A few temporary setbacks immediately post op is nothing compared to the horrid UC flares...
The loop ileo is notoriously bad. Hopefully your reversal surgery isn’t too far off. I had a tough time with my loop too. Unfortunately I wasn’t able to get any real solutions because my stoma was so...
I wish you all the best hunting for remission!...
Do you have pan colitis effecting the entire colon? Steroid dependency is a huge deal and something you don’t want to deal with down the road. It’s hard for anyone to say what you should do based on...
I did decide to try remicade before I had surgery. It didn’t work so surgery it was after that. Looking back I wish I didn’t waste the time on the remicade but hey, you just never know if it’s going...
If all goes according to plan, you should be able to get some work done from home for your job after 2 weeks. My takedown surgery was textbook and 3 weeks post op I took my kids out trick or...
Not sure exactly what you’re having done but I had j pouch surgery 7 years ago and it’s been a HUGE blessing. I don’t take a single day for granted being UC free. Best wishes for a speedy recovery!...
I was very fortunate and takedown recovery was pretty easy for me. I was only in the OR for 30 minutes and I had very minimal pain when I woke up. The soreness was mainly from the stoma sutures. I...
No horror story here. I have had my j pouch for 7.5 years now with no issues. My sister and uncle have j pouches as well...long time....27 and 20 years for them....no issues there either. It's a...
Took a short walk about a week after being released from hospital. It was summer time so I was itching to get outside. Also about a week after being home I went to the store but didn’t drive. Doctors...
It’s normal after any major surgery. Don’t worrry it will happen....
Just wanted to say I was an extremely severe case of pancolitis and I had a successful j pouch procedure. Like no joke.....I had it BAD. It’s been 7 years now with my j pouch and I’ve had zero...
with my j pouch I use the bathroom about four times a day. I had my surgeries at Jefferson University Hospital in Philadelphia. PS - it's important to know that going to the bathroom with a J pouch...
I did not read through most of this thread but I just wanted to say my j pouch has been a life saver for me. When I had the temporary ileostomy in place I had a really tough time with it (not...
Well I will say this.... It's a lot better to have this procedure done while you are somewhat well than if you're really sick. You'll heal faster. I had surgery 7 years ago and it's been a life...
I had a 2 step procedure and it was a little over 3 months between step 1 and 2. Probably would've been a little bit sooner but I had a complication that set me back a little bit. Hope for the best...
Can you describe the pain/location a little more?...
I had the procedure done 7 years ago. Best thing I ever did! I had it done in 2 steps. It was tough...won't sugar coat it....but entirely worth it! My advice is if you're seriously contemplating it,...
For me it all came down to quality of life which was non existent since my UC was so severe. Take a good hard look at your quality of life: Can you work? Can you have a social life...i.e. Can you...
Best of luck! Best decision i ever could have made. THANK GOD for this j pouch of mine! Wishing you a speedy recovery!...