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???
Primarily canoe and kayak racing for the last 13 years. We train often paddling fast and up to 20 km each time twice a week. Floor and light weight exercises including crunches. I walk 5 km a day and cycle sometimes. I am nearly 64.
I exercise at 70. Daily. Not too entense
@GEB56 posted:Primarily canoe and kayak racing for the last 13 years. We train often paddling fast and up to 20 km each time twice a week. Floor and light weight exercises including crunches. I walk 5 km a day and cycle sometimes. I am nearly 64.
Anything too extensive can cause bowel problems. I think the crunches are the culprit. A lot of people on here have gotten hernias and blockages from crunches/situps and weightlifting. I would back off on the crunches.
As for duration of exercise: I would do at least 30minutes but no more than 1hr at a time, especially with your age.
Is your stomach poking out around the umbilical area? Belly button turn into a outty???
@Susan B posted:I exercise at 70. Daily. Not too entense
That is good! Continue that! But definitely take it easy.
I love hearing about older people moving around,That is super cool!
Hey. I am not old. Experienced. Lol.
@Susan B posted:Hey. I am not old. Experienced. Lol.
My bad hahaa! Experienced lady 
Lol. I am going to take someone on here’s advice and try Metamucil wafers. The phylum husks gave me a scare
When I canoe and kayak train it is always 2 hour duration. I think you are right Lauren about blockages/hernias from sit ups, crunches etc. If I get this resolved with surgery or more time, I QUIT with regards ab exercises.
Thank You. I will start with one package
I was 33 and pregnant with my second son in 1994. I thought I had bleeding hemorrhoids. My OB told me “No” and to go see a colon doctor. After my first sigmoidoscopy, I was immediately diagnosed with UC! I was shocked! It was down hill from then. I’ve been sick ever since. Bla, bla, bla. Fast forward to 2011. After my yearly colonoscopy, my doc told me he found pre-cancer cells. Sooo, September 2011 I had my colon removed. Everything went according to plan. My take down surgery was January 2012. Three weeks in the hospital! My body wouldn’t cooperate. It was a nightmare! Not a good memory. But, I’m here to talk about it. So that’s good.
Good for you Smedge, similar story for me. Didn't have any choice, and ended up in hospital for a month on 2 occasions. Have to say I am happier with the pouch than a bag. Currently in 8th week of lock-down in Melbourne/Australia so finding a toilet is not really an issue!
Yes Rob. We all have a potty near while In Quarantine. Stay Healthy my fellow j pouches
After I had my takedown, I was so used to the bag. I almost felt like something was missing . Then I was scared I wouldn’t be able to hold it.
Thank goodness I have three toilets in my house. Unfortunately three of my family members have GI issues! We work it out.☺️
@GEB56 posted:When I canoe and kayak train it is always 2 hour duration. I think you are right Lauren about blockages/hernias from sit ups, crunches etc. If I get this resolved with surgery or more time, I QUIT with regards ab exercises.
Yeah 2 hour durations are definitely quite extensive, especially since its similar to weightlifting- as we know already, weightlifting can cause a lot of abdominal problems. I think you definitely need to fall back on that for sure. I would try to keep it between 30-60minutes if you truly cannot go without canoeing/kayaking.
And yeah definitely, I would definitely recommend not to do those abdominal exercises since you are having problems and considering your age. A lot of gastros/people do not know about abdominal exercises causing all of those problems, I learned about all of that stuff recently from other J-pouchers and on the internet.
Definitely do less extensive stuff. Also overeating can cause blockages, hernias, and other stuff too. So definitely be careful with not overeating as well.
18
@edp posted:18
I could not imagine getting that done at 18! That must have been hard with school! You are soo strong
@Smedge posted:After I had my takedown, I was so used to the bag. I almost felt like something was missing . Then I was scared I wouldn’t be able to hold it.
Thank goodness I have three toilets in my house. Unfortunately three of my family members have GI issues! We work it out.☺️
Totally normal!! Do they have IBD too???
@Former Member posted:I could not imagine getting that done at 18! That must have been hard with school! You are soo strong
Thank you! I had to defer my first semster at college but in the end it was all worth it of course. I am just grateful to have gotten through it and be healthy now!
@edp posted:
Totally understandable!!! I had to quit college quite a few times because of IBD and even having it in high school was brutal. I wish teachers and everyone in general can understand and be more empathetic towards people. A lot of people do not even try to understand things until they are going through it themselves; that needs to change!
So happy you got through everything! I love hearing how people do not let IBD or other situations beat them!