I was 34 yrs old. I am now 70 ~~ I have had j pouch longer than my colon ~no real problems. Blockages in the beginning ~~I wish I didn’t have to go the the bathroom as much as I do. And always have most always have gas when I empty pouch. Embarrassing at times.
Hello Susan. That is amazing how well you have done over a long period of time. I am nearly 64 and have had my J-Pouch 2 1/2 years due to UC. Have had a few bouts of pouchitis, burning and itching from fissures and currently have a partial obstruction which is very uncomfortable. Hope it resolves soon with better says ahead. All the best.
I'm currently 65 at the time of the surgery i was 39. I was very fortunate to have a one step procedure.
I am 2 months post take down and did j pouch surgery at 42. This has been very hard on my family as all of this is so new and didn’t get much guidance from my doctor... was told to eat basic carbs for first few weeks and I’ll see you next month. This site has helped me a lot. I am struggling with burning and BM’s....I go so much that I don’t even sleep next to my lady anymore so she can sleep. She caught me in tears the other night because the burning was just too much to handle. I am trying any and all recommendations that I find on this site and am positive that my pouch is just new and will settle down with time. Tried psyllium husk powder today For the first time with very promising results...
51, 4 years ago.
@Ryan138 posted:I am 2 months post take down and did j pouch surgery at 42. This has been very hard on my family as all of this is so new and didn’t get much guidance from my doctor... was told to eat basic carbs for first few weeks and I’ll see you next month. This site has helped me a lot. I am struggling with burning and BM’s....I go so much that I don’t even sleep next to my lady anymore so she can sleep. She caught me in tears the other night because the burning was just too much to handle. I am trying any and all recommendations that I find on this site and am positive that my pouch is just new and will settle down with time. Tried psyllium husk powder today For the first time with very promising results...
Hi Ryan. I def know what you are experiencing. Hang in there ~~Keep area clean ~~if too raw to touch with warm cloth you can get a plastic spritz bottle. Clean area n blot it. Apply Eucerin
cream ( no lotion ) ~~it’s very thick cream ( good barrier ) worked for me ~~ once in a great while I get it ~~I remember It well. I also ~~when it was very bad n too painful to touch ~~ from a distance used a hair dryer ~~drink lots of water ~~ this will pass ~~ think positive ~~ you are not alone ~~ feel free to ask me anything. Good luck my fellow j pouched
@Susan B posted:I was 34 yrs old. I am now 70 ~~ I have had j pouch longer than my colon ~no real problems. Blockages in the beginning ~~I wish I didn’t have to go the the bathroom as much as I do. And always have most always have gas when I empty pouch. Embarrassing at times.
Wow! That is amazing!
Going a lot is way better than constipation/blockages, that is what I tell myself to make myself feel better about it lol.
@Ryan138 posted:I am 2 months post take down and did j pouch surgery at 42. This has been very hard on my family as all of this is so new and didn’t get much guidance from my doctor... was told to eat basic carbs for first few weeks and I’ll see you next month. This site has helped me a lot. I am struggling with burning and BM’s....I go so much that I don’t even sleep next to my lady anymore so she can sleep. She caught me in tears the other night because the burning was just too much to handle. I am trying any and all recommendations that I find on this site and am positive that my pouch is just new and will settle down with time. Tried psyllium husk powder today For the first time with very promising results...
I am so sorry to hear that! I am glad you are doing better though! Its only going to get better from now on.
@Claudia S posted:I'm currently 65 at the time of the surgery i was 39. I was very fortunate to have a one step procedure.
Your lucky that turned out okay, There are a lot of risks due to having a one-step procedure, especially in the beginning. You must have good luck lol.
RYAN when you lose the colon the stomach acids take a much quicker exit route which means possibly burning episodes, I was successful with sitz baths the 1st year and actually used a lot of OTC Desinix and A&D for the burn along with cold wet or icecubes in washcloths. I slept with a waterproof pad and learned to sleep on my stomach when my system was loud & gurgling which my sleep deprived husband appreciated! lol
Over the years I realize that my pouch now seems to have more times which it might expand or bulge a bit which means it needs to release either in a BM or gas. I know the Metamucil is fiber and can cause the gas, but it also helps to pull the loose stool together for a more solid BM; and by adding Gas X Simethicone softgels (125mg) a lot of the gas symptoms seem to be in check!
@Ryan138 posted:I am 2 months post take down and did j pouch surgery at 42. This has been very hard on my family as all of this is so new and didn’t get much guidance from my doctor... was told to eat basic carbs for first few weeks and I’ll see you next month. This site has helped me a lot. I am struggling with burning and BM’s....I go so much that I don’t even sleep next to my lady anymore so she can sleep. She caught me in tears the other night because the burning was just too much to handle. I am trying any and all recommendations that I find on this site and am positive that my pouch is just new and will settle down with time. Tried psyllium husk powder today For the first time with very promising results...
Ryan i'm 3 months post take down, the first few weeks i was exactly the same as you described, was up all night, felt helpless, now i sleep trough the night, still have bad days but overall it's good, be positive stay strong it will get better.
Hang in there @ryan138 the burning will go away as your skin gets used to the enzymes normally absorbed in the colon. Its very painful I now but does go.
@Susan B posted:
Pantoprazole might help with that too. Are you using wipes too???
What is pantoprazole
@Susan B posted:What is pantoprazole
Pantoprazole reduces the amount of acid your stomach makes. Medicines like that helped during my early takedown days.
Thank you. I don’t like to take anything.
@Susan B posted:Thank you. I don’t like to take anything.
Anytime! And same here lol. Unfortunately a lot of us need medicine nowadays, but I totally get where you are coming from. We have all taken enough stuff already lol.
Lauren. I started Pantoprazole 3 days ago. More distended and painful. Waiting again for surgeon to email. I wonder, as a possibility, if I have an umbilical hernia choking the bowel. I do exercises and sports.
@GEB56 posted:Lauren. I started Pantoprazole 3 days ago. More distended and painful. Waiting again for surgeon to email. I wonder, as a possibility, if I have an umbilical hernia choking the bowel. I do exercises and sports.
Ah! That makes sense now! I have heard many times on here about people doing specific exercises\sports and it causing: hernias, bowel twists, and blockages. With a J-pouch we have to take it easy when it comes to exercises, we cannot do anything extensive.
What exercises/sports are you doing???