The only thing I can suggest is to Drink Water: before during and after every meal and to definitely move around.

I would reach out to gastro for help for sure.

Yes I’m always drinking with food. My gastro said chew like a baby cow. Make food like mushy cud and juice the greens and fruits. No dietary fiber or nuts. Basically I can’t eat how I want to avoid another blockage.

@ColonGoneGirl posted:

Yes I’m always drinking with food. My gastro said chew like a baby cow. Make food like mushy cud and juice the greens and fruits. No dietary fiber or nuts. Basically I can’t eat how I want to avoid another blockage.

Oh good! I would mention self-dilating with your doctor, maybe that might help.

I love your name!!! HAHA!!!!

This sounds extremely frustrating. This is one of my biggest concerns about getting a jpouch. So sorry you are dealing with this.

Thanks Sara14

Its a toss up since active UC is a debilitating disease but if the JPouch surgery is done wonky or your body just decided to be a total dick, than you’re still screwed. For me it’s the scariness of whether I eat something that can cause an obstruction. And it’s not like it’s foods that I KNOW cause them (popcorn oatmeal cabbage sauerkraut etc) it’s anything I feel with some crunch or chew to it. And the adhesions that crop up after any abdominal surgery can wrap around the small intestine to cause an obstruction... it’s just scary. My life is revolves around my bathroom habits. Not sleeping a full night because of needing to go is scary but I will say the only thing that helps with slowing down uncontrollable bowels is Tincture of Opium. It’s natural so your body will expel it via the liver (unlike the OTC anti diarrheals they suggest which are all man made artificial crap) it’s old school liquid so it’s very concentrated and it’s also a narcotic.  I hope you can control the ulcerations before they ruin your large intestine and surgery is the only way out. But humaria and remicaide are worse than taking the diseased colon out , they can lower your immune system and cause a form of leukemia. I told them go f*** yourself if you think I’m doing that. The prednisone was a nightmare I wasn’t going to keep taking more sh*t that my body broke down more from. I don’t eat anything with preservatives or artificial etc so why would I knowingly put meds into me that can cause possible cancers etc?  And IBDs ARE 100% AutoImmune and my surgeon (who FIXED the first surgeons Eff Up Pouch surgery) told me “you will get a form of Rheumatoid Arthritis It’s Autoimmune” damn it he was spot on but I use turmeric daily to keep the flares down and get crazy amounts of natural sun which helps.  

That sounds so awful. I'm so sorry! Yeah, I've been trying all the biologics the past 2 years and not only are they really scary, but they do nothing for me. Well, Remicade worked for a total of 9 weeks, that's it. I did mostly fine on just mesalamine the first 6ish years, then was okay on mesalamine with a course of pred thrown in 1-2 times per year for another 5 or 6 years. Last 2-3 years, can barely get off steroids. I was fine on Uceris for a year until I got my Moderna covid shot. Now back on pred. I am worried about my bone density. I got diagnosed with osteoporosis at age 35. It was mild and I was able to reverse it back to osteopenia just by exercising and taking Vit. D, K2 and calcium, thank god, but I'm still borderline and of course being on more steroids is going to impede my progress of building back bone density! A doctor told me it was impossible to reverse naturally and wanted me to take Fosamax. I said no thanks, I'm on enough terrifying drugs right now. Reading these posts is making me really not want surgery though! Also, pred makes me gain so much weight and I never lose weight with my UC.

Thanks for the tips and for sharing. I'm not sure if I can get tincture of opium in the U.S.? I'll have to look into that.

Tincture of opium is hard to get in the US, but not impossible. It can be very helpful, but I think it’s completely unnecessary and ill-advised for anyone who gets satisfactory results from Imodium or Lomotil.

Thank you, Scott!

@ColonGoneGirl posted:

I’ve had so many strictures I can’t count

idk what I can eat with this jPouch since every time I do what I like (healthy Frssh veg and fruit, not cabbage cauliflower or Broccoli) I seem to wind up with an obstruction. Sometimes I can use a heating pad and magnesium to undo it but then there’s the I CANT BREATHE times and it’s a trip to the ER. I don’t eat popcorn, big salads, any meats (only fish) pasta, rice but I like nuts, grains and fruits/veggies. No alcohol either. Well I’ve been told I can’t eat high fiber, fresh fruits or veggies or nuts only the nut butter. I need to cook veggies to almost mush (or what I do is juice my own daily )  I miss eating healthy . The white low fiber food diet is gross and makes me fat. Yes it keeps you out of hospital but then there always a risk of a free floating abdominal scar tissue wrapping around the small intestine  I don’t get how all this works and it’s been 9 years of hell to be honest. Anyone go through this and does it get better and will the structuring and scar tissue go away ? Thanks

Do you know if pouch strictures (usually narrowing at an anastomotic site) or small bowel obstructions are the issue? It sounds like you’re talking about SBOs from your post. I was plagued by recurrent SBOs during the 6-7 months with my loop ileo (had one severe with my end ileo before that but that end ileo was Overall so much better). Developed an obstruction every week it seemed with the loop. The times I ended up in the hospital for pain control and decompression with NGT, my imaging showed the SBO with a transition point indicating where the blockage was. When my surgeon did the takedown 3 weeks ago, he said he lysed a large circumferential adhesion near my stoma that was essentially strangling my bowel. I probably have other adhesions but he felt confident this was the one causing all these issues.

While by no means ideal—more surgeries inevitably lead to more adhesions—if they can identify an offending adhesion/adhesions, you may consider having them lysed. And no, adhesions do not go away but also do not always cause issues. Recurrent SBOs were a nightmare and very difficult to live with. I’m sorry you’re dealing with them.

Hope you find a solution to your suffering. This disease is rough.

They’ve said I have two things , one is when the original surgeon did the temporary ostomy he ADMITTED he “didn’t pay attention to that since it was temporary so I didn’t spend the time on it” (don’t even get me started with this nightmare! His nurse and staff were literally SPEECHLESS) so it would open up burning me daily (I couldn’t look at it , I had a nurse come daily sometimes 2x to change it and she said “in all the years of changing these I’ve NEVER seen one put on so badly Or carelessly”!   Ugh so anyhow, it’s where the former opening is, a tiny ‘hernia’ type hole in the abdominal wall so when the intestine goes by, it might get stuck and or if an asshole adhesion is hanging in the area  then there’s the former massive structure at the anastomosis site (which my new GODLIKE surgeon FIXED with his newly developed surgery, I was the 13th one back in ‘14)  he was like WTF IS THIS GHETTO EXCUSE FOR A JPOUCH (well I knew he meant that with his WTF surgeon face)  yet I’ve had only 3 obstructions since then but it’s been the adhesions wrapping around the instestine to cause the garden hose to stop water flow type sitch. But this go round, I was told my HEALTHY AF EATING (I began to go back to my raw veggies no white bland low fiber yuck foods they say is best (gained SO MUCH WEIGHT FROM THAT WAY OF EATING!)  apparently it began to give internal intestinal problems like structuring down due to aggravating it with the high fiber and rougher type foods, so I CANT BLOODY WIN!  And regarding Tincture of Opium: I’ve spoken to several pharmacists and doctors who’ve agreed long them need for anti diarrheals causes other issues like imbalance of gut bacteria and pouchitis so Opium is best. I’ve never had a bought of pouchitis since I was fixed in ‘14 and never once had hemorrhoids or fissures. I am careful with my T of O and use sparingly mostly before bed to ensure a leakage free sleep or if I know I’m out for an extended time where I can’t get to a lavatory.   But I shall inquire about the SBOs and the adhesion sitch yet it’s true it’s a vicious cycle , you take one out and another one comes (this is why I was in for scraping them at the anastomosis site 23X in 2.5 years after takedown surgery because he effed me up down there and they kept doing the quickie in under anesthesia scrape it out and let me go fixers which just created new ones.  Bottom line it seems to be how each persons body and mind handles it, the foods we can and can’t eat and if your idiot rude surgeon doesn’t explain it to you and instead effs you up from the get go so you’re on your own with sh*t p*ss and acid flowing out your temp bag and your booty cause of the insanity inside he created.  Yale School of Medicine saved me. But damage was done that even a spell from Harry freakin Potter couldn’t undo!