J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
It me months to recover but I had complications unfortunately, I was a rare case as I am in most things lol. If I have to, sometimes I can hold it for hours although I prefer not to and sometimes I cannot hold it for long periods of time. Its hit or miss. [ more ]
I am glad you are not bleeding anymore! Please keep us updated. Hope you feel better all the way. [ more ]
Hi, GDL900. You’re right, the second surgery to close the stoma is a small surgery compared to the first surgery creating your j pouch. My second surgery was approximately one hour. I was in hospital for 5 days recovering. Some J pouchers are in hospital for 2 or 3 days only. When I got home, it was frequency and urgency, at least 12 times a day in the first week or so. But it got better after a few months and now I am completely well and in control of when I need to use the bathroom. There... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
OK, first you need to understand the difference between muscle spasms in the gut and muscle spasms in other areas. There are 3 different type of muscle fibers: 1. smooth muscle (as seen in the intestines) 2. skeletal (as seen in your arms, legs and spine) 3. cardiac (in your heart) These different muscle types have different functions and properties. Smooth muscle in the gut is in constant wavelike motion. If it moves too fast or not coordinated, you get painful cramps. Anticholinergic... [ more ]
Here is a website on spasms: https://www.healthgrades.com/r...s-and-muscles/spasms I cannot explain why this happens honestly. I know sometimes it can be caused by anxiety, stress, surgery, not exercising, dehydration, but that is about all I know about that, sorry- I hope this helps you. [ more ]
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J-Pouch ForumsGeneral Discussion
I prefer NOW brand or Konsyl, no additives at all just pure psyllium husk powder. Konsyl is pretty pricey unless you find it in bulk lots on eBay, NOW is super cheap. I put it in a glass of diet cranberry-raspberry juice (or diet cran-mango) so I don't want flavors. Most of all I don't want or need dextrose or any other sugars/sweeteners. I'm passionate about the stuff though. I was having passing thoughts of de-pouching when I took someone's suggestion to try it instead of the Benefiber I... [ more ]
Some people do not look at things efficiently, especially when they are not looking for it. [ more ]
how is that possible? everything on the shelves for any type of med or whatever has the generic version right next to it.. [ more ]
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J-Pouch ForumsGeneral Discussion
PERFECT! I love how we can drive home afterwards Your lucky getting it done in offices is much better than the hospital or surgery center, for sure, that is if there is no emergency of course. [ more ]
yes, in surgeons office [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you. [ more ]
Lisa, congrats on your wonderful outcome, I am beyond thrilled to hear stories such as yours. 🙂🙂😁 Sara, I understand your situation and I am so sorry to hear you are all alone. Whatever you ultimately decide to do, please to not underestimate the need for support after each step. This is major surgery and just learning to use an osteomy bag, if you require one is no small feat. As I discussed previously, surgical outcomes vary and you don’t know what if any complications might arise. I... [ more ]
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J-Pouch ForumsGeneral Discussion
I just want to be honest with you that I never did get over it. It's a constant battle which for me is about half meds and half hydration. Yet I still chase two small children around, have two jobs one of which is an internship and just graduated grad school. It does not have to be life or career ending it just takes a lot of management and being very annoying to your healthcare providers [ more ]
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Pouch I take Cipro 2x day, fold in a Flagyl combo to double up the effect every two to three weeks. Also take Entyvio every 8 weeks……..It is hit or miss by the day ! Especially when off the Flagyl. I try to stay positive. Although, I fight depression as well. It may not always show. But, I feel damn glad to be alive !!! I get to watch my kids grow up ! They get to have a dad in return. I endure for all those who never had this chance. Never got a second lease on life. I cry when I need to... [ more ]
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J-Pouch ForumsGeneral Discussion
Totally agree. Once pouchitis has been confirmed with scopes and the patient has an accompanying set of symptoms, abx without a scope makes sense. I think Shen’s point was symptomatology is often unreliable as other pathology can cause the same symptoms as pouchitis so in the newly diagnosed or in those who stop responding to their typical 2-3 courses of abx per year, then it’s time to scope/re-scope and possibly do other testing. High deductible plans are tough. My brother’s is 5k for... [ more ]
yeah but if you have pouchitis a few times a year , scopes sometimes take a while to have done or a lot just cannot afford the cost of them. A pouchoscopy done at Cleveland clinic under sedation would cost be about $2000 after insurance.. I have high deductibles, which are $3500.00 individual or $6900.00 family, so I would rather do a course of antibiotics first that cost me about $5.00 . If it doesn't help then I would look into getting a scope. [ more ]
Despise flagyl. Shen put me on tindamax at one point. Might be worth checking out if tindamax can be used instead. [ more ]
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J-Pouch ForumsGeneral Discussion
I work in a factory and find somedays worse than others as I start work early and only eat a banana for morning break before having a sandwich 2 hours before hometime.I found lockdown bad as well as the public toilets were closed.I see alot of non jpouchers go more than me and some even hide in the toilets when they have no work.Im usually in and out quick or go during my breaks.most employers are just glad you showed up for work. [ more ]
I am a utility worker and have to rely on public bathrooms every day. Covid has made it very hard as even fast food places closed their bathrooms. It slowly is opening up but some how I have made it work as I am 1 of the lucky 9%ers that goes 14 times a day (most are after noon). [ more ]
I have an office job. I came back to work after my takedown right into Covid and our team was working from home. Now we've decided to stay remote, so I have not had to go back to the office and won't in the future either. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Glad your well hone! Happy 4th to you too [ more ]
Hi again, my last pouch was a K pouch and I had a lot of issues with intubations and having to do that at least 12 times a day in my case. From prior surgeries I had a lot of adhesions that added to the problem and caused a lot of pain throughout the abdomen and entire pelvic area. I was very limited on what foods I could digest that could exit through the catheter.Also much difficultly in emptying my bladder, had to contort my body to empty myself of both waste products. Weird, but I’ve... [ more ]
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J-Pouch ForumsGeneral Discussion
I been averaging 10 times a day, but don't seem to be emptying all the way out and sometimes when I go, I don't go much at all. Rice kind of constipated me after I ate it for three days strait. I eat my first meal around 10:30am to around 11:30am, then I have another small meal at around 4-5pm then a small snack like a plain bagel around 6-630pm, then don't eat anything till the next day, so it give the jpouch around 14 hours to kinda rest. Everyone is different and everything is trial and... [ more ]
Excellent! Glad your doing well. Are you taking anything for Butt burn? Little and often is a better way for a pouch I reckon, what times are you having your meals? How many times a day are you going Currently? next step for me is pouchagram on 30th july [ more ]
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J-Pouch ForumsGeneral Discussion
The usual Flagyl course is 7-14 days. When I was doing an antibiotic rotation, I was on each antibiotic 14 days. Jan [ more ]
People vary a lot. I’ve been on both Cipro and Flagyl for about 6 years. [ more ]
I can't handle Flagyl for very long. How long is the course of Flagyl for most of you? Cipro i have no problems with. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch inlet strictures aren’t particularly suggestive of Crohn’s. It’s an area that can be chronically inflamed a bit, and that’s enough (along with some bad luck) to cause a structure. [ more ]
Yes thank you so much! Very helpful I’m having a pouchoscopy soon so we will see if this is something they can do. I’m worried about Crohns but I guess it’s more semantics. [ more ]
Hi, @katenet . It sounds like you have a stricture that is narrowing your pouch inlet, and causing some backup behind it that’s making the small intestine a bit bigger (dilated). I’m guessing that your GI will recommend dilating the stricture, which might include sedation and might take more than one session. Did you have other questions or concerns? [ more ]
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J-Pouch ForumsGeneral Discussion
Visbiome is completely different from Florastor - Visbiome is a mixture of probiotic bacteria, and Florastor is a strain of yeast. They serve very different purposes. Unless you’re taking just one or two caps of Visbiome it’s a *very* potent probiotic, and your system needs a chance to adjust. If you follow @Former Member’s advice to introduce it slowly you’ll probably start to tolerate it well, but there are no guarantees. Visbiome is likely to reduce the frequency and duration of pouchitis... [ more ]
You can try starting slowly. It usually has the opposite effect for me, it firms up the stool in the morning if I take it at night. [ more ]
I think you should give Scott a private message about this. He knows about Visibiome. [ more ]
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J-Pouch ForumsGeneral Discussion
Also a good thought for the future, if antibiotics do not work, you can also try biologics, just another possible option. Hope you feel better love! [ more ]
It sounds like your pouchitis may not have fully resolved. It may be worth another course of a different antibiotic, perhaps for a bit longer. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Hope you feel better hon [ more ]
Update 6/22: I met with GI doctor this morning. Here are the highlights in no particular order: 1. Scheduled pouchoscopy for early August 2. switching me to visbiome probiotics for 2 weeks 3. the iv antibiotics I am taking thru Sunday for my uti can cause GI distress. He feels once that is over I should feel better. 4. eat whatever I want 5. Continue Imodium before breakfast and dinner plus two more around 7-8 pm. 6. Will re evaluate in two weeks, might try canasa as an interim solution... [ more ]
Your welcome, hope you feel better. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for this information. I have the exact issues with sleep and have been taking ambien for over 6 years. I will give this a try and report back. Lack of sleep is an awful feeling. [ more ]
Sounds cool! Closing my eyes and counting works, reading a little bit until I get tired. Classical music [ more ]
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J-Pouch ForumsGeneral Discussion
@Spooky I’m so glad that a *treatable* source of the trouble was found! You should be up to your old tricks in no time. [ more ]
Thanks for the update, Spooky. It’s food for thought if I continue to have the gurgling/bloating and certainly if I (please let me not jinx myself) develop an obstruction. [ more ]
Always a relief to get some answers! Hope you can get everything resolved soon. [ more ]
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J-Pouch ForumsGeneral Discussion
Gosh - what are the chances of finding another poor guy that has a J Pouch and was recommended to soak in a bleach bath. I am kinda that guy. I got MRSA - a super bug that infected my stomach skin post surgery and I sat in a bleach bath every night for ten nights because the antibiotics were not working. My J Pouch was fine created but not hooked up. I did the bleach baths with my leaky loop ileostomy and it was fine. I can’t see why the J Pouch would be effected. Maybe if you have butt... [ more ]
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I can’t see the connection. It is not as if you are doing bleach enemas or drinking bleach! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
I had The pillcam twice and it helped confirm crohns in my small bowel after they thought I had UC. This was in 2004 and 2007 or so and the technology for it then required a huge bundle of hard drives, wires and batteries. I looked suspicious wearing all of it but walked a mall and it passed within just a few hours even though they made me wait much longer. I couldn’t go home since I was two hours away so I walked that mall. [ more ]
Hi, I got one last week. Did you get one after 5 years? [ more ]
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J-Pouch ForumsGeneral Discussion
For what (if anything) it's worth, I've found that I had to go into the hospital with the loop obstructions but have not had to with pouch partial obstructions. I was fortunate in that I used to be able to go right to the ward and bipass the ER which made it much less daunting. [ more ]
Definitely agree. It's sometimes difficult to know when to go to the ER when you're dealing with partial obstructions. I've had several that have passed at home. I generally judge by pain and duration, but if I start having any nausea or vomiting I will go regardless, or of course if I have a fever. On the last occasion when I did go, I was in the ER for hours awaiting x-ray results, only to be told "things don't look too bad" and was discharged home to continue fluids and monitor for any... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
I used nothing for 7 years post-pouch and did just fine. Then I developed a fistula and surgery for that damaged my sphincter, rendering me functionally incontinent. Using Metamucil and Imodium before meals helps me avoid leaks/accidents. Later I developed chronic pouchitis-I still take the above to manage incontinence but layered on antibiotics and Imuran to treat the pouchitis. I'm not sure that metamucil or Imodium would help prevent or treat pouchitis BUT if you had a low-level,... [ more ]
I have been taking loperamide since my surgery in 1995. The dose has been reduced over the years as my gut adapted, but I still take it. I have never had issues with it. Metamucil, however, was a problem for me. It caused too much gas discomfort. Jan [ more ]
How much are you using? I take one full dose prepared as described on the package with breakfast and dinner, and it has a modest but useful effect for me. If I wanted a greater effect I’d take it with lunch, too. I tried the capsules but they didn’t seem to mix adequately during their trip through my body. The wafers worked well but added more calories than I wanted, so I’ve been using the powder for quite a while now. How thick are you trying to make your stools? Solid, formed stools aren’t... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Your welcome dear [ more ]
Thanks Lauren. I appreciate the advice. [ more ]
I think you should possibly try biologics in my opinion. I think you should try every possibility of getting better before throwing in the towel on your J-pouch. i would hate for you to have regrets down the road. You know? [ more ]
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J-Pouch ForumsGeneral Discussion
I take my necessary supplements in ordinary form. B-12 tablets, D3 gel-caps, B-1 tablets, and fish oil gel-caps. These are all recommended by my PMD based on diagnosed deficiencies. These have been fine, as proven by follow up blood test monitoring. I used to take multivitamins, but studies show they are not useful. A varied diet is best. Jan [ more ]
I try to get all my vitamins in gummy form, that way there's no worry about pills dissolving! I take Calcium+D, multi-vitamin and C - all in chewy form. I also take Fish oil and Biotin - both are liquid capsules. I'm also on Dr. prescribed Potassium right now (and that's in capsule form). I personally try to only take meds that will dissolve and/or absorb in the stomach. My system runs pretty fast, so I can't count on much getting absorbed - except for extra calories 🤣. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
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My doc goes up into the terminal ileum too, but not that far. But you are right, if there is a lot of inflammation, there is more discomfort. I have my share of scopes with pouchitis. Jan [ more ]
I think my doc suggested one every other year unless something came up that he was concerned about. I chose sedation bc I had inflammation and thought it was going to be painful and, well why not 😉 In my case, since I was sedated, he was able to go higher up in the small intestine to check out some kinks that were causing me problems from previous obstructions. So it was helpful, in that sense, to “map” it out higher up. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
When I was taking humira. It was $1700 per shot. Two in a box. Remicade. When I was taking it was $7000 per infusion. I had insurance and had to pay the majot medical deduction. Humira is up to almost $4000 per shot now. I don't use any of it anymore. But you can look up cost of biological meds. Now you know why and how they pay for all these wonderful commercials you see on TV. P. S. Humira never worked. But I tried it for a long time along with another injectable after. Remicade worked... [ more ]
Stelara has a good safety profile compared to the other biologics. Sorry your insurance doesnt qualify for the program. If it makes you feel better, it has done absolutely nothing to help my UC. [ more ]
Thanks for your advice Jan, I really do appreciate it 😊 [ more ]
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J-Pouch ForumsGeneral Discussion
First of all congratulations! At you stage I was going 40x a day. Since I did not have a choice, I just coped with it and made sure I was near the restroom all the time. Whenever I went out, I always knew where the restrooms were. After a few months, things started slowing down to 14-20, almost 7 years later is 14-20 still. What has helped is accepting reality and accepting the things I cannot change, when I started doing that, everything came together and I manage everything more better... [ more ]
I would say around the 2 or 3 month mark is where I started to get things figured out. I'm about 6 months out from my takedown and I workout hard just about every day. Today I ran 3 miles, jumped rope, did burpees and jumping jacks then sat in the sauna. I can eat pretty much anything I want although for the most part I eat very clean with lots of probiotic rich foods like organic Greek yogurt, organic cottage cheese, kombucha, and some other stuff like that. I sleep all through the night... [ more ]
I don’t have easy access to the bathroom for my work…it took 3 months post takedown till I was thrown to the wolves…I was nervous at first but I have made some adjustments to my food intake and timing….been back to work for 7+ months now..i have managed pretty well, not everyday is perfect but give it time you will be fine.. [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you for the words of encouragement Kmiller! Got the results of my CT Scan back - nothing major with the pouch, but as suspected there's pouchitis milling about. I've been put on flagyl for six weeks and I'm almost already a week in and have been controlling the urgency better - last night I only got up twice to use the restroom. My surgeon did mention the possibility of incorporating Remicade into my treatment, but wanted me to speak with my GI doctor. If it comes to that, it is what... [ more ]
I'm at 15 months from take down and my first year was a little rough. I had a few bouts of pouchitis and also cuffitis. So early or not, it could be pouchitis. It's gotten much better overall, although this week has been a rough one and I'm on flagyl. I had a CT scan at one point early on like you. All was ok. Cuffitis was found 7 months after takedown with a scope. My point here is everyone is different and you can have issues that antibiotics will help soon after takedown. I don't tell you... [ more ]
Your welcome dear, try not to drink, drinking is not good for us. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
There is always next year, the fact that you raised money is amazing! [ more ]
That's awesome! I always wanted to participate in one of those. I was going to a couple years back and raised some money, but then I think I got sick and didn't actually make it to the event. lol. [ more ]
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J-Pouch ForumsGeneral Discussion
you can eat tomatoes but not tomato sauce? i read tomatoes can be tough bc of their skin, high acidity and pectin. i eat cheese pizza yes!! that’s how i describe it to anyone and everyone (no one in my life has ever heard of this, neither had i before last july). the only non-puréed veggies i’ve tried are cooked spinach and sweet potatoes. my one year old nephew has a more varied diet than me 😂 [ more ]
I'm six months out and I mostly eat homemade burgers with fish,chicken or meat with tomatoes and lettuce for dinner but I think that's just my choice.tomato sauce is not good.I can eat anything but moderation is the key.I think having a jpouch is like being a baby again as mushy food or food that you could feed a small child are best. [ more ]
I understand. Convatec sensi skin barrier cream bothered me, itching!!!! [ more ]
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J-Pouch ForumsGeneral Discussion
I started taking Biotin about a week ago, feels and going great!!! [ more ]
I am glad to hear that!!! Its crazy how hair ties ruin our hair and even takes it out, pretty scary!!! I am glad to be using scrunchies full-time now Too bad I found out about it recently, Better Late Than Never though lol [ more ]
Switched to scrunchies a long time ago. They're terrific. [ more ]
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J-Pouch ForumsGeneral Discussion
Love the layout you did haha! Creative And okay sounds great!!! Drink before, during, and after every meal and move around as well [ more ]
Thanks, guys! Lots of things to think about now. @Former Member I hadn't considered my water intake being important for digestion of fiber, but of course that does make sense. I could be more hydrated, so I will try working on that. @Jan Dollar Oddly enough, I really don't seem to have any issues with most carbs. But I 100% do notice that I do not digest tomatoes and peppers very well (which are in the nightshade family, right?) I have also noticed that overly fried/greasy foods and large... [ more ]
Hi, @LizAdair . This connection between salads and arthritis seems very unusual. Most people who discuss their ability to tolerate veggies are focused on bowel function and bathroom activity, and that advice isn’t really what you’re asking about. I’d be surprised if it’s really the fiber itself. Jan’s point that vegetables in the nightshade family can be problematic offers a strategy you might try: a vegetable-specific elimination diet. In your case you could test the hypothesis that this is... [ more ]
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J-Pouch ForumsGeneral Discussion
Diaper rash cream- calmoseptine. The hospital should have diaper rash cream, Convatec Skin barrier cream, they should have that, ask the ostomy nurse. [ more ]
Wow I just read all of these events!!!! I’m so sorry your dealing with all of this on top of a new j pouch!!!! Here to jpouch 2.0, you got this!!! Are you able to soak in a low bath below your incisions sites for your bottom?! This always seems to help me with the burning. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
This is how my early days felt, so I can relate. Eventually you get to feel your own body's "flow" and, yes, baring down is still a part of toileting for me. When my output is super watery no need to strain. When it's not as watery and I know i have gas bubbles that need to come out, I allow myself to strain a bit more. I know though when I'm having a flare up and it's time to sh*t or get off the pot, lol. It's a journey. Hang in there!! [ more ]
Yeah, it is a bit of a learning curve. When your rectum was removed, along with it came the muscles that automatically contract during evacuation. The small bowel has musculature that propels its contents forward. But, when it comes to the pouch that does not exist. This is because half of it contracts one direction and the other half contracts the opposite way. So, you have gravity, pressure, and time. This is why thick stool is not a good thing. Rather than getting into laxatives, you are... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Lots of replies. I need a gastroenterologist recommendation for North Carolina,perhaps near Greensboro familiar with the j-pouch. [ more ]
Who did you end up seeing? I'm also in Indiana. I saw Dr. Robb for a consult once and it was a very bad experience. He was extremely rude, as was his staff. I would never go to him again. [ more ]
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J-Pouch ForumsGeneral Discussion
Definitely space it out at least 2 hours. [ more ]
You might be able to get your insurance company to cover the prescription strength. I was successful, albeit after a year-long fight. [ more ]
Thanks, Scott. I think I’ll start the visbiome back up and separate it from abx. You’ve had a long history of taking both abx and an equivalent probiotic so good to hear from you. I guess it can’t hurt other than my wallet. Also, I don’t expect to feel any different on the probiotic and honestly the data is all over the place on efficacy. But I did find a reasonably well controlled study that showed delay to first bout of pouchitis (maybe a moot point for me considering only 4 weeks out take... [ more ]
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Join Us!
Founder, Creative Director & Web Master
William J. Johnson
bjohnson@j-pouch.org
Bill Johnson founded the J-Pouch Group in 1997.
After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.
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Jan Dollar R.N.
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