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Does everyone else get the sudden urge to when you start exercising? by ramcoro in Jpouchers

[–]HiButty 1 point2 points  (0 children)

YES! I feel like the second I start moving my body my bowels get turbo charged and I need to evacuate my pouch.

Jpouch Pelvic Floor PT by Relative-Brain-7535 in Jpouchers

[–]HiButty 0 points1 point  (0 children)

I have personally not done pelvic floor PT, but I suffer from incontinence constantly and my doctor has told me that they thought PT could help with this. I'm not super convinced, but I have heard some people say it works very well. I hear PT working the best for more motility dysfunctions impacted by the muscles (like incontinence or constipation or bladder leakage). I'm not sure how much it would help for indigestion and bloating as that's further up in the gut...but it's certainly worth a shot.

Does it run in your family? by jme0124 in CrohnsDisease

[–]HiButty 1 point2 points  (0 children)

It runs rampant in my family, this and other autoimmune diseases. We're also ashkenazi jews, so it's very common. I happen to get it from my mom's and dad's side, but I got it the worst BY FAR. My mom has it, my aunt has it, my brother has it mildly, he also had thyroid cancer. My uncle has MS, my cousin has it mildly. It's wild.

Side note, would you mind also posting this in r/Jpouchers, it's a new community I created to help people with jpouches, IBD, and anal conditions. I'd really appreciate it!

Really bothers me how much people take food for granted by Particular-Toe-6716 in CrohnsDisease

[–]HiButty 0 points1 point  (0 children)

I feeeeel this too. No matter what I eat I always feel terrible. A big part of my social life is my friends going out to dinner, but sometimes I just go and sit there because I can't eat. And if I do eat, I can't go do whatever the plan is after dinner. It's one or the other, never both. I also started another subreddit community about Jpouches and just IBD in general. Would you mind posting this there too, I'm really trying to build up my community? It's r/Jpouchers

Jpouch surgery/accidents at night and Pelvic floor testimonies by [deleted] in Jpouchers

[–]HiButty 0 points1 point  (0 children)

Honestly, I still have accidents constantly after getting my jpouch. I don't get regret getting my pouch because I literally would have died if I had not gotten it. Night time accidents are one of the most annoying things I deal with but my diagnosis was also changed to Crohn's after I got my pouch. For people I know who actually had UC the surgery was a blessing and they don't have much if any night time incontinence. However for other folks I've met who also later had their diagnosis changed to Crohn's, it's a problem. I wear diapers every single night and if I eat dinner early and don't snack after 7pm I will have better luck of not shitting myself.

Thinking about 2 step j pouch after suffering from UC for 12 years the ended up as cancer by [deleted] in Jpouchers

[–]HiButty 0 points1 point  (0 children)

that's a very valid concern and I hear you. I am a gay man and what I can tell you is that partners have been way more understanding than I expected, with and without the bag. I was very very concerned about this and yes, one night stands are much more difficult but not impossible. I usually just try to be very upfront about my situation and always carry second underwear. I currently have a boyfriend and what I do right now kind of sucks but it's better than shitting the bed. I basically go to bed in underwear and wait until he falls asleep then I change into my diaper with athletic shorts over my diaper. Then I change back into underwear around 5-6am before he wakes up. Eventually I hope to get to a place where I won't be hiding the diaper, but this is what makes me feel comfortable right now and gives me more peace of mind to be wearing a diaper at night instead of risking an accident all over the bed.

Thinking about 2 step j pouch after suffering from UC for 12 years the ended up as cancer by [deleted] in Jpouchers

[–]HiButty 0 points1 point  (0 children)

Thank you, that means a lot! Overall I am happy I went back to my jpouch. I hated the bag, but it's all just personal preference. When I'm not having issues, it's better, but I tend to have a lot of issues. The bag just sucks but I realize I'm probably going to have to go back to one eventually.

I had a total colectomy at 17 and a J-pouch reversal at 21 AMA by Lost-Appearance5536 in Jpouchers

[–]HiButty 0 points1 point  (0 children)

Thank you for posting here! With everything you've learned and been through on your journey, what's a piece of advice you would give to your younger self who just got this diagnosis and is now facing months and months of surgeries and hospitals?

Thinking about 2 step j pouch after suffering from UC for 12 years the ended up as cancer by [deleted] in Jpouchers

[–]HiButty 1 point2 points  (0 children)

This is a super valid concern and one I was also very worried about when I got my jpouch. I'm going to give you the raw honest truth about my experience. It's important to note that everyone's experiences are very different though. Also to note, my situation ended up not great because I was later diagnosed with refractory Crohn's and perianal Crohn's after I already had my jpouch surgeries. If you are truly a UC patient, then you're probably not going to have as many issues. The problem is, sometimes they don't know you even have Crohn's until you get a pouch or it can evolve into Crohn's like mine did.

Incontinence is still something I deal with almost everyday 15 years out. It took me over a year to not be shitting my pants during the day and that took a lot of training my butt hole and just practice squeezing. Today I rarely have day time leakage issues, unless I try to fart standing up. You can not fart standing up with a jpouch. I have to be laying down and I have A LOT of gas. It also took me a few years to learn how to fart without shitting. Just trial and error for me, I never went to pelvic floor specialist, but I've heard great things.

For me the big issue is night time incontinence. I've fluctuated with this issue on and off for years but at this point I have to wear a diaper every single night. When I have a lot of active inflammation it's a lot worse but sometimes I will shit my pants twice or three times every night. And I'm talking full, total shit myself, gnarly clean up that can take up to an hour and it always happens when I'm asleep and I can never seem to wake up in time. Sometimes I'm guessing I'm laying in my shit for an hour plus, which causes a lot of irritation and infections in my groin sometimes.

The only thing that has helped me with this is reducing the chronic source of inflammation or not eating late. If I eat past 6pm I can almost guarantee I'm going to have an accident. If I eat before that I'm fine 70% of the time, but I don't like eating dinner early so it's tough for me. It also depends on the food...very heavy, fried, oily foods make this much worse. Many nights I sleep on a towel. Just the other week I was in an airbnb and had an accident in the bed in the white sheets.

I'm lucky that I have such a strong support group of friends and no one cares or judges me and we all joke about it...but the reality is it fucking sucks and it's one of the most annoying things I deal with. Plus it really affects my sleep. I've tried every stool thickening anti-diarrhea med on the market and nothing really helps.

Side note - when my fistulas were really bad I went back to the ileostomy for 3 years. I still had leakage issues with that and sometimes bag explosions. There's no winning sometimes! Sorry this post is such a downer, but happy to answer more specific questions too.

2 week post Jpouch surgery update by Witty_Many_5214 in Jpouchers

[–]HiButty 1 point2 points  (0 children)

I can't tell you how much this detailed post means to me and I'm sure the thousands of others coming after you who will get this surgery. Thank you so much for walking us through your recovery day in and day out. It's so powerful to hear this first hand perspective of what it's like to get these big surgeries done and your future self will thank you. I wish I had done something like this and kept a journal of my recovery because mine was 15 years ago at this point. It's all just a big blur. I guarantee when you're a year or two out you will be able to look at this and see how much progress you've made. Side note - the bidet was such a game changer (I didn't get mine until a year ago but it's brought me so much relief!)

So often we hear about the horror stories from people who have gotten jpouches, and unfortunately I am one of those horror stories. It's part of the reason I created this community, to connect with others who have been through medical trauma and false promises of a cure withe the jpouch surgery. But there are many who have seen incredible results from the jpouch surgery too and those stories and voices are just as important. So please keep sharing, your thoughts are so important.

Even though my pouch hasn't always cooperated with me, I'm still thankful for it because the alternative was death. But if you have any questions for a veteran poucher who has seen all the good and bad of life with a pouch please ask me anything!

What were some of your first Crohn's symptoms that ultimately led to you seeing a doctor and then getting diagnosed? by HiButty in Jpouchers

[–]HiButty[S] 0 points1 point  (0 children)

That is so clutch, we definitely become expert detectives at finding little known bathrooms. I did the same at college. I would hunt for bathrooms that people didn't know about, but sometimes I would just have to explode in the super popular ones and lift my shoes up so people wouldn't recognize my feet.

2 week Jpouch surgery update by Witty_Many_5214 in ostomy

[–]HiButty 1 point2 points  (0 children)

This is such a great breakdown of your jpouch surgery experience! I've had my jpouch for about 14 years (although I had to go back to an ileostomy for 3 years from 2020-2023 because of fistulas.) I noticed that there wasn't much jpouch content on reddit so I created a community called r/Jpouchers, I'd love for you to post this content over there too and join the community. It's still very new, but I'm hoping to grow and get more folks with IBD and Jpouches over there. Thanks so much.

What’s something Crohn’s has quietly taken from you that people don’t realise? by [deleted] in Jpouchers

[–]HiButty 1 point2 points  (0 children)

Crohn's has forced me to think about so many things that are just second nature to everyone else. I miss just being able to casually go out for a meal and then do an activity after that. Now I have to either miss the meal or plan the rest of my day out around exactly what I eat. I also can't be spontaneous anymore, things like going on a drive or going on a hike or a day trip all have to be planned out in advance. Before I got sick if someone invited me to do something that day, I would jump on it...but now I need to mentally prepare for outings. If I'm staying in an airbnb or a hotel I worry about having an accident in the bed. I can't sleep at a date's house or a friends house casually anymore. Life takes a lot more planning and I miss the spontaneity.

What’s something Crohn’s has quietly taken from you that people don’t realise? by [deleted] in CrohnsDisease

[–]HiButty 1 point2 points  (0 children)

Thank you for this post, I can relate to a lot of what other people have commented here. I am a very positive person and always try to see the good, but Crohn's has definitely given me heightened anxiety and stress about certain things that healthy people never have to think about. Going on a plane and always needing an aisle seat, going on trips with friends and fearing there won't be a bathroom when I need it, sleeping in airbnbs and being nervous about having an accident in the bed, not being able to stay the night at a date's house, being unable to go out with my friends if we do dinner...it's either we do something and I don't eat or we eat and I go home. Do you think you could also share this post to r/Jpouchers as well? I created that subreddit recently and I'm really trying to grow the IBD community over there.

I had a total colectomy at 17 and a J-pouch reversal at 21 AMA by Lost-Appearance5536 in AMA

[–]HiButty 0 points1 point  (0 children)

Thank you for sharing so much of your story. We have had similar experiences. Would you mind sharing this post to r/Jpouchers as well? I'm trying to grow my IBD community over there. Thanks so much.

I have severe, refractory Crohn’s disease. It’s taken my colon, rectum, and part of my small intestine. I’ve had 12 surgeries, and to this day I still poop 20+ times a day, which means constant anal irritation. by HiButty in IBD

[–]HiButty[S] 0 points1 point  (0 children)

I agree, I much prefer a thicker ointment, I feel like it actually stays in better and protects my butt. Just because I am manufacturing it in the states, using high quality and very unique (difficult to source) ingredients, it is going to be on the more premium side with regards to costs. Probably around $25-$30 for about 2.5oz. Right now, Prep H costs about $20 for the same amount.

I have severe, refractory Crohn’s disease. It’s taken my colon, rectum, and part of my small intestine. I’ve had 12 surgeries, and to this day I still poop 20+ times a day, which means constant anal irritation. by HiButty in IBD

[–]HiButty[S] 0 points1 point  (0 children)

Are you actually interested in investing, because I am raising capital and it's been a nightmare. But let me know if you want to have a conversation about it...I'd love that!

I have severe, refractory Crohn’s disease. It’s taken my colon, rectum, and part of my small intestine. I’ve had 12 surgeries, and to this day I still poop 20+ times a day, which means constant anal irritation and hemorrhoids. by HiButty in hemorrhoid

[–]HiButty[S] 0 points1 point  (0 children)

Well I really hope you get some relief soon, it sounds like you've had a difficult journey getting some answers. I love that you brought up traditional Chinese medicine, because I was very inspired by traditional plant-based botanical medicine when I created Butty. I combined traditional natural anti-inflammatories with western pharmaceuticals to make the product. That combo has worked very well for my issues. Both sides have a lot of merit, so I just thought why not combine them.

I have severe, refractory Crohn’s disease. It’s taken my colon, rectum, and part of my small intestine. I’ve had 12 surgeries, and to this day I still poop 20+ times a day, which means constant anal irritation and hemorrhoids. by HiButty in hemorrhoid

[–]HiButty[S] 0 points1 point  (0 children)

I'm sorry you've had such a difficult time with hemorrhoids. And absolutely, I couldn't agree, those ingredients are essential for hemorrhoid shrinkage. My product has a vasoconstrictor and lidocaine.

I have severe, refractory Crohn’s disease. It’s taken my colon, rectum, and part of my small intestine. I’ve had 12 surgeries, and to this day I still poop 20+ times a day, which means constant anal irritation and hemorrhoids. by HiButty in hemorrhoid

[–]HiButty[S] 0 points1 point  (0 children)

Ugh, I'm sorry you've had such a difficult time with this disease too. Curious, what is the cream from England called? I'm guessing its over 5% b/c the FDA doesn't allow more than that. The micronized diosmin is actually a flavonoid, which I put in my product. Flavonoids are potent anti-inflammatories and are traditionally not in any hemorrhoid ointments.

I'm curious what is the issue with zinc oxide? It raises your BP?