I was 22- one week after my birthday XD
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I get mine in about 4 months and ill be 44
38. First and only flare, diagnosis, colectomy and take down were all in 4 months. I had no idea I was even sick.
60, diagnosed in April, first and only flare, hospitalized for dehydration, malnourished, on TPN, blood transfusions, shingles, SVT, Erythema Nodosum and frozen shoulder, surgery in November, 3 stages over 9 months.
I was 37. Diagnosed with UC Feb. 2006, baby born March 2006, 1st surgery May 2006 (2 days before my 15th wedding anniversary), 2nd surgery August 2006, and take down October 2006.
I didn't have any prior UC flares before this either. Things moved from bad to worse rather quickly. Thankfully, my daughter was born healthy during all this craziness.
@Kangaroo posted:38. First and only flare, diagnosis, colectomy and take down were all in 4 months. I had no idea I was even sick.
DANG!!!! 4 months??!!! Goodness!!!
@Still Standing posted:I was 37. Diagnosed with UC Feb. 2006, baby born March 2006, 1st surgery May 2006 (2 days before my 15th wedding anniversary), 2nd surgery August 2006, and take down October 2006.
I didn't have any prior UC flares before this either. Things moved from bad to worse rather quickly. Thankfully, my daughter was born healthy during all this craziness.
Especially since us women have a 50% infertility rate after J-pouch surgery, thank goodness you had kids before. I am 27 with no kids, I may have trouble in the future.
57 years. UC at 34 yrs
Got the pouch at age 36, had it removed at age 61. 
@n/a posted:Got the pouch at age 36, had it removed at age 61.
Due to complications?
Got it at 23. Now 57.
I have had mine since 1985 and I am currently 53 years old.
@n/a posted:Yes, almost every one you can think of! The tipping point was a fistula that wrapped around my pouch, and a septic abscess.
Do you have any complications with your ileostomy? Like blockages, stoma retracting? etc??
No blockages. I had my pouch disconnected with an end ileostomy for a yr before pouch removal. During that 1st yr the stoma retracted often. It was revised when the pouch was removed, and is sooo much better/ longer. No real problems with it.
@n/a posted:No blockages. I had my pouch disconnected with an end ileostomy for a yr before pouch removal. During that 1st yr the stoma retracted often. It was revised when the pouch was removed, and is sooo much better/ longer. No real problems with it.
Do you have to go to the hospital when the stoma retracts???
No - I worked with my ostomy nurse. I also did not expect a revision during the jpouch removal, but my surgeon said it was kinking underneath. Am so very happy with the revision.
I got my j pouch when I was 34~~I am 70 ~~ I have had pouch longer than I did my colon. A few blockages but absolutely no other problems
I’m 79 and I think I got my pouch in 1991. I’ve continuing bouts of diarrhea. I use metamucil daily. I’ve noticed A lot of TV adds regarding treatments for UC. In my UC days it was azulfadine or prednisone. I wonder if any of the new treatments would help me with ongoing diarrhea bouts? Any advice appreciated.
I was 37 in 1992. I had an unusual amount of complications and ended up spending the summer of 1992 in the hospital finally got my J Pouch. Take down was October 1992. Unfortunately I was left with at least 12 to 14 bowel movements a day that nothing can control! So I have been suffering with malsorption and severe anemia for yrs. I also started to develop in 2004 partial bowel obstructions from adhesions. I’ve had 6 bowel obstruction that required an NG tube. I gave up eating solid food eight years ago. Everything is blended or soft. I am not going through another partial bowel obstruction Unfortunately also my surgery left my central nervous system compromised. I have been without full use of my balance since my surgery they have no idea what happened. I know that I am an unusual case. Most do far better with the surgery and it is life-saving. I was able to take care of my child and see my grandchild be born for that I am grateful. But I have always wondered for those of us that got the surgery in the early 90s when the incision Was apparently done differently than it is now do we suffer with more adhesions? Ty
34 and I am 70 now. Doing excellent
@JK Love posted:I’m 79 and I think I got my pouch in 1991. I’ve continuing bouts of diarrhea. I use metamucil daily. I’ve noticed A lot of TV adds regarding treatments for UC. In my UC days it was azulfadine or prednisone. I wonder if any of the new treatments would help me with ongoing diarrhea bouts? Any advice appreciated.
SInce you are older, do you have problems holding it and do you go more often now???
@Susan B posted:I got my j pouch when I was 34~~I am 70 ~~ I have had pouch longer than I did my colon. A few blockages but absolutely no other problems
SInce you are older, do you have problems holding it and do you go more often now???
@Justine posted:I was 37 in 1992. I had an unusual amount of complications and ended up spending the summer of 1992 in the hospital finally got my J Pouch. Take down was October 1992. Unfortunately I was left with at least 12 to 14 bowel movements a day that nothing can control! So I have been suffering with malsorption and severe anemia for yrs. I also started to develop in 2004 partial bowel obstructions from adhesions. I’ve had 6 bowel obstruction that required an NG tube. I gave up eating solid food eight years ago. Everything is blended or soft. I am not going through another partial bowel obstruction Unfortunately also my surgery left my central nervous system compromised. I have been without full use of my balance since my surgery they have no idea what happened. I know that I am an unusual case. Most do far better with the surgery and it is life-saving. I was able to take care of my child and see my grandchild be born for that I am grateful. But I have always wondered for those of us that got the surgery in the early 90s when the incision Was apparently done differently than it is now do we suffer with more adhesions? Ty
I am soo sorry to hear that! I had multiple problems with my ostomy- I kept getting blockages due to a thick, muscular abdominal wall. Everything has its pros and cons unfortunately.
No and no. In my opinion the diarrhea is probably caused by whatever is wrong with my immune system in the first place. I guess I was wondering if the new drugs treated the immune system.
@JK Love posted:No and no. In my opinion the diarrhea is probably caused by whatever is wrong with my immune system in the first place. I guess I was wondering if the new drugs treated the immune system.
You are doing AWESOME for 79, especially with no colon or rectum
@JK Love posted:I’m 79 and I think I got my pouch in 1991. I’ve continuing bouts of diarrhea. I use metamucil daily. I’ve noticed A lot of TV adds regarding treatments for UC. In my UC days it was azulfadine or prednisone. I wonder if any of the new treatments would help me with ongoing diarrhea bouts? Any advice appreciated.
Somebody said that Remicade makes thicker stool, I am not sure if that is the case with everybody, might want to ask gastro
@Former Member posted:Somebody said that Remicade makes thicker stool, I am not sure if that is the case with everybody, might want to ask gastro
Immodium helps too
I was 37 years old. I’ll be 65 next month so with the kids with this. The only thing that slows down my bowel movements and makes them have more consistency is when I am on amoxicillin. Are usually take amoxicillin when I have extra bacteria in my stomach because I developed severe Gerd and esophagus Issues over the years. But I can’t be on antibiotics every day. Nothing works to slow down the diarrhea or the number of bowel movements a day. I’ve learned to live with it.
Thanks Lauren. I will ask about Remicade.
I was 33 in 1994. Had UC for 9 years prior. Had Jpouch for 26 years. Redo In 2009. Have diarrhea consistently. Meds only work for a few days then stop. Trying Loperamide Gel tabs and they seem to be working. Most pills go right through me. Now I have kidney disease stage 2 going into stage 3. WS hospitalized for a month after redo and was given Toradol which caused the kidney disease. Can’t take any NSAIDS. Just bought a Bio Bidet and it’s a life changer!
17 :/ ....now 39
I was 34 and I am now 70
47, got it feb 26 of this year
How is yours doing? I get mine later this year
Its ok, haven't been one of the lucky ones running around after 3 weeks but at just about 5 months i feel much better. Patience is key! I see improvement every week and can get out now, shop, go out to eat. I work from home.. I eat a lot more variety, haven't really had butt burn, and actually slept all night this week! You will get lots of support and info here.
Kmiller ya this site has helped alot. I hate reading all the bad stories but im encouraged when i read the good ones
I was 47 and I'm now 54 so 7 years.
@Susan B posted:I was 34 and I am now 70
Since you are 70, do you have problems holding it like leakage??? Or do you go more often now???
@van posted:17 :/ ....now 39
Dang! You were younger than me, I was 22, I am now 27.