J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
Hi Cb2009, I'd say that 20 mm is not so much either. Just remember how formed stool of a healthy person with a colon looks like. It's important that the tissue is flexible enough to widen up if necessary. I have chronic pouchitis / ileitis for 18 years now with too soft or partially liquid stool most of the time. That's why flexibility is getting worse over time. [ more ]
Thank you Scott. I do need to get a gi! If my surgeons office gets back to me, I will ask for a referral. I really want to find someone who knows j pouches. It’s too bad because other than this emptying issues, my pouch is great! I just need to know if this narrowing is causing the issue or if I need to move on to something else. I would think it wouldn’t be that difficult to let me know one way or the other! Steve thank you for the information. Are you saying that my opening is only 8mm... [ more ]
The diameter of 8 mm at the anastomosis is very little. You experience those problems with straining yourself if stool consistency gets "better". I once had a training device for pelvic floor training that came with a probe head of about 20 mm diameter, and I could insert it through the anal channel. You should ask a gastroenterologist or proctologist for an appropriate tool to do self dilatation of that narrowing. I know there are such conical looking tools but I never used one myself. Your... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bright red blood is very fresh, so the hemorrhoids are the most likely source. Watery diarrhea and pain after eating can be cause by a bunch of things. Obviously you need to get a GI to help you sort this out. Hopefully it will be someone you can trust in spite of the traumatic experience you had with that earlier polypectomy. You can’t really afford to ignore those polyps. [ more ]
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J-Pouch ForumsPouchitis
Thanks Scott! [ more ]
When I had SIBO the dominant symptom was gas by the buttload. A couple of months of doxycycline cleared it up for me, but rifaximin is also sometimes used. [ more ]
It’s SIBO a thing for us? It’s not pouchitis. Is it when things just aren’t right for a while? And can it be treated with a round of antibiotics? [ more ]
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J-Pouch ForumsGeneral Discussion
Thank you all for the advice. Greatly appreciated! [ more ]
I've noticed now that it's fully summer, if I get dehydrated I have more problems emptying. I also need to drink considerably more water than before surgery, since so much is lost without the colon. Obviously way more when I am exercising in the heat, but more all the time. And you may want to add electrolytes to some of that water, especially if you are in a warm climate. [ more ]
Sorry you are having these problems. I’m only 4 months out but I am the same. If not liquid, I have to strain and push and I get so sore, and usually even then I still don’t feel empty. My surgeon has been less than helpful and I also don’t have a gi right now so I understand what you are going through! The only thing I have found that helps is instead of straining, which for me usually comes morning and night but during the day I’m fine, I use a warm tap water enema. Approved by my surgeon. [ more ]
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J-Pouch ForumsPouchitis
Also does anyone have the link to the aforementioned Columbia webinar? [ more ]
Reading through this thread and thinking I might bookmark it for talking points for my next GI appointment. My Dr thinks I have Chron’s due to inflammation above the pouch but I am loathe to go back on immunosuppressants. I have never been inflammation-free but have felt quite well overall. If my pouch seems to get too upset I feel I can usually bring it back under control with diet and rest. So it seems I have that ongoing “friendly inflammation” that was mentioned? My previous GI would... [ more ]
This is a useful article that shows a lot of options: https://journals.sagepub.com/d...77/17562848211023376 Also this one (“Clinical guidelines for the management of pouchitis”), see the diagram on page 6. btw, have you tried doxycycline antibiotic? It works for me. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsHelp! Need advice now!
Valen, you’re just beginning your life. I hope you find some breathing exercises or mindfulness techniques, or something else that works for you. If you can do that now, you will be doing way better than most of us. Anyone else have some suggestions? I think we could all use some! [ more ]
@tulsamom Yeah, stress i killer on my pouch. In my most ‘stress-free’ times my pouch worked like a charm and I never even though about it. Correctly in med school and it’s a pretty heavy load to carry. Any advice on how to handle that stress? I’m only 18 and this is the first time I’ve experienced the stress of a career or college. I’ve been through way tougher things (I almost died from UC for gods sakes!) but this college anxiety is killer to say the least! [ more ]
It sounds like what happened to me when I get super stressed. When the stress goes away everything goes back to normal. But that length of time is too long. I agree with Scott about dehydration. And when I was having a similar situation that wouldn’t resolve at 12 days I asked for Cipro. Fixed it right up. Maybe a little too well. But I don’t even know why Cipro works. But I’m glad I thought of it because my skin was shredded. Good luck!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
So, I probably panicked. It did sound consistent with an anal fissure. The symptoms have fully resolved themselves. It took about 7 days. My doctor told me she would have wanted to take labs and a stool test if the burning/stinging got worse but luckily I didn't have to go through all that. I think it was either eating Sichuan pepper or cake that did me in, combined with being in a hyper-stressful/emotionally triggering environment. I was back visiting the town where I lived when I was first... [ more ]
Have you looked up the symptoms of an anal fissure? It sounds like that may cause such burning and stinging you describe. If such a fissure is located inside the anal channel, it burns if an undigested piece of food (like nut pieces) gets stuck in there. If so, you could try to flush it out with a strong water jet (bidet or shower). Or carefully examine with a finger and a non irritating gel like petrolatum. When I had such a fissure, I could tolerate it during daytime when I was busy, but... [ more ]
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J-Pouch ForumsK-Pouch Korner
Thank you, unfortunately, I don't have Facebook. [ more ]
the k-pouch facebook group is very active, if you're on facebook try posting there you'll get a lot more responses. [ more ]
Thank you! partly that is due to gas -- there is maybe 100ccs of fluid, but as soon as I put in the catheter, a huge gas burst comes out. It gets better in the afternoona nd evening, it's just the morning. Thank you for the response! I wish this board was more active. [ more ]
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J-Pouch ForumsGeneral Discussion
Same with me when I was on Cipro. The only reason to start at a lower dosage would be to control side effects. In the past I took as much as 1000 mg Cipro and 1000 Flagyl daily, to control pouchitis symptoms. But I didn't have any side effects, other than sun sensitivity from the Cipro. [ more ]
every time i was prescribed Cipro its been 500mg twice a day for 7-10 days [ more ]
Cipro is 250mg twice per day [ more ]
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J-Pouch ForumsGeneral Discussion
When I saw Dr Shen, I was told probiotics are not suggested for the pouch as they are intended to work in the large intestines. I was told they can increase risk of getting SIBO as well. [ more ]
Thank you so much, I think you are right, [ more ]
I try and take all medicines/supplements during the day. I only take Imodium at bedtime. i found that even taking flomax at bedtime caused some minor leakage, so I just avoid taking anything that will cause potential issues. just one of the many things I have learned about my body over the last 13 months. [ more ]
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J-Pouch ForumsGeneral Discussion
is it the nicotine that is the issue? what about smoking marijuana ? [ more ]
There is a chain on this forum about someone who uses nicotine patches to help treat pouchitis, I think, meaning nicotine can be beneficial, especially if the origin of the trouble that caused you to need a pouch was ulcerative colitis. I used to be a regular smoker and now I'm just an occasional social smoker. I have found alcohol to be irritating to the pouch and that usually accompanies the social smoking, so I'm unsure about the effects of smoking without drinking. [ more ]
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J-Pouch ForumsPouchitis
I have the same problem when my pouchitis flares up badly. Try doxycycline as an alternative antibiotic: it worked for me. See my post. [ more ]
Have you tried using a bidet / shower after a BM? If it is an anal fissure, then it should get better if you can remove something that has got stuck in the fissure that way. [ more ]
Thanks for the answer Scott, the pain is constant but it's x10 when I defecate. I'm so used to having soft stools and with the cortisone treatment it makes it harder which also equals to more pain...I also find it sounds like anal fissure but the specialist I seen barely looked at me or said a single thing to me except - take Steroids for 6 weeks see if that helps, it sounds like pouchitis.. I love the sitz bath idea. Will definitely do that!! [ more ]
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J-Pouch ForumsK-Pouch Korner
Great idea with " I put a bit of toilet paper in the bowl and that keeps splashing to a minimum. " Thtank you! I actually bought a little collapsible bowl today to use in private bathrooms to put in my kit that maybe I can put on the counter or in the sink to easily stand. [ more ]
I always stand to empty my pouch I don't like to sit, though I have done so (mostly in public bathrooms) I have not tried sitting backwards, that sounds weird. My husband even had a special little stool build to my specifications for use at home and I empty into a little bucket. I will also kneel in front of toilets if its not a public restroom (like a friend's house). I prefer to stand in stalls, a lot depends on how low the toilet is. I put a bit of toilet paper in the bowl and that keeps... [ more ]
Thank you for all your tips! It definitely helps to have advice from others and it must have been an adventure for you at the beginning. I wish this forum was more active. My stoma nurse said to sit backwards, but I don't know. I am going to buy a collapsible bowl and put it in the sink as standing is much easier for me. It seems like the only solution. [ more ]
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J-Pouch ForumsK-Pouch Korner
Thanks I’ll give both things a try! [ more ]
Are you using cold or warm water? I find that much like doing the dishes, using very warm water is much better. Additionally, sometimes after I squirt water in I will let it sit for a few seconds by keeping my syringe in the end of the cath before letting it all back out again. [ more ]
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J-Pouch ForumsGeneral Discussion
I have been on Gerd meds for years. I have had to change several times due to side effects after time (Nexium) and some non effective. The Dr's say u shouldn't be on these for long term and took me off and I had terrible heartburn again. So they had me take Pepcid which is less harmful but too many breakthroughs. I am back on Omeprazole and they wanted it to be only a month or two, it's over 1 yr again. I don't think I can get off it. It's a double edge sword. I need to feel good in the... [ more ]
I’ve been taking the prescription generic Nexium for over a year, 40 mg twice a day. So far it does seem to be helping me. I have to get pre-authorization for this every year by my insurance company. It cast me $74.00 for 90 days. [ more ]
Thank you Scott for your prompt reply [ more ]
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J-Pouch ForumsHelp! Need advice now!
SteveG, thanks for the note and information. Here is the link to the Link to clinical.gov site . Correct high scores and previous surgeries disqualifies at this time. [ more ]
Steve I looked up the treatment and it seems to be a first line treatment. There is a current FDA trial going on for PCa, and it excludes men with prior surgery and high Gleason scores. thank you so much for the information. It’s good to know the researchers continue to try and develop new and innovative ways for cancer treatment. if there is a non surgical/non radiation treatment out there I would be interested, in case the future does not bode well for my prostate. [ more ]
I heard about a new cancer therapy called "NanoTherm" (see magforce.com). But it is still subject to studies (also for the treatment of prostate cancer in the US). And I do not know if it is applicable after prostatectomy, they speak of "focal treatment of solid tumors". [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I think that while there's no silver bullet, all the fiber options work to some degree or other. I've been starting the day with oatmeal to which I add chia seed pudding: basically chia seeds that have soaked up unsweetened almond milk and a splash of pure maple syrup overnight. The Chia adds about 10g fiber to oatmeal's 3. I sometimes add some banana. It's loaded with calcium among other nutritional benefits. I do one dose of Konsil during the day. Have Metamucil wafers for when I'm not... [ more ]
Anyone else try this? I’m curious why this would work better than psyllium. [ more ]
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J-Pouch ForumsGeneral Discussion
My doc said it wasn’t a hard rule that you couldn’t take it within 2 hrs of calcium. I mean, it’s better that you take it so whenever works best for you. I ran into that problem with an antibiotic and my vitamins but I take meds morning noon and night. I can’t be worrying all the time (shrugs) [ more ]
Thanks Scott. (And interesting theory. I'll go along with it!). I'm taking it 2x a day. One during the night and the other midafternoon so there is a several hour gap if time. [ more ]
I take my Cipro at bedtime to steer clear of dairy/calcium - that also why I experimented with once-daily dosing, and confirmed that it worked fine for me. If you’re allowing a couple of hours of gap you’re likely to get good absorption of the Cipro - sources seem to vary regarding how much of a gap to allow. I had the speculative thought that I may not care about Cipro absorption if I’m using it to treat a problem within the gut (heck, I might prefer less absorption), but there’s not a... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Haven't tried the pepto but I will keep that in mind - thank you [ more ]
I sympathize. Not sure I'd have gone this route if someone had told me I'd never sleep through the night again. I use a Garmin now to keep track of how frequently I'm up and how much sleep I do get. I follow many of the same protocols of others here and am able to string together enough good sleep on either end of waking to function normally. Though it's not the same as the 8 end to end hours I used to get before the surgery I've also tried Pepto Bismol at bedtime at the advice of my... [ more ]
I've started going to the gym and find I sleep so much better.I still get up once or twice but straight back to sleep. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for posting this, I’m gonna give it a try. I’ve tried both separately, they work for a while then stop, I’ve been the chia & flax seed route, I feel like I’ve done it all in my 40+ years of j-pouch. [ more ]
Ok, this is years later, and I truly hope your issues are solved by now. Just in case it might help, I’m including something I posted earlier today: Having a JPOUCH means you must learn to manage it, or life is a misery. Banatrol Plus and psyllium have really helped me. The Banatrol Plus comes with a one tablespoon scoop. What I have learned about my JPouch is that one scoop of Banatrol Plus, and two scoops of original formula KONSYL (psyllium) mixed with about 4-5 ounces of ice water will... [ more ]
Yes. Matter fact I finally got a prescription in for supporities. There again its like cipro for me, after awhile it stops working. Chia seeds sure don't give me energy. Thats why I'm trying to find things to get back on track. Again I'm tired,back hurts and sluggish. So I'm trying to eat healthier again. I'm having trouble w/old habits coming back. So having this discomfort I can't find things that are making my pouch/backside worse. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thank you so Much! [ more ]
Cipro absolutely does it for me. And quickly. 500 twice a day was prescribed, a course of 14 days, for my symptoms related to mucosal prolapse and corresponding bacterial overgrowth. I repeated that dose. I found it best to ease off rather once symptoms were under control rather than stop suddenly. Recently added it back at night, and currently on 250 at bedtime. I also take Rifaximin as maintenance. But it actually seems to soften the stool. [ more ]
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J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
Hmmm... yeah. I don't think they regularly check for B-12 in my daughter's blood work. We started having her take additional magnesium, potassium, and calcium and it hasn't completely eliminated the issue but has helped. She also switched to Inflectra (bio-similar for Remicade) and should be stopping her Colazol end of week, so hopefully any absorption issues will resolve. But I might suggest testing her B-12. Thanks! [ more ]
Thanx Ceew it is good to know what has helped others. It's been in the high 90's for the last week or so and I've struggled with hydration and cramping too. [ more ]
I had leg cramps really bad and a friend told me she started taking B12 supplements. I take it now before bed and rarely have leg cramps anymore. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Thanks both. I take them for other non-pouch issues @Sara Marie so hopefully you wont need it. I finally got through to the docs and they also suggested deferring the dose until I recover @Scott F -thanks for you input. [ more ]
Anti-TNF medications are a subgroup of biologic medications. For J-pouchers they are used for stubborn inflammation-related GI issues. For example, if my antibiotics (for chronic pouchitis) stopped working I’d try to find an effective biologic, and some folks switch even before antibiotics stop working. No one really knows for sure what to do about them during an active Covid-19 infection, but I’d probably delay my dose for 10-14 days. [ more ]
I have never been offered anti TNF meds for my j-pouch issues. Should I look into this? What are the side effects? Sorry you have COVID. I hope you get some answers to your questions. [ more ]
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J-Pouch ForumsK-Pouch Korner
At home I kneel in front of the toilet because of my postnasal drip I have a lot of gas and I think this contains things (spatter) better. I have rarely emptied my pouch in a public restroom but when I have I would stand. [ more ]
I flush once every time I empty my pouch. [ more ]
Thanks, Kim! I start that in two weeks. Hopefully as i clamp over these two weeks I can help my pouch adequately grow. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Thank you! I also have issues with dairy. I wonder if it's just the milk/lactose or if that extends to the bones of the cow? I also am experimenting with collagen powder. I don't seem to have a skin allergy to cow leather, so I assume I'm ok with other cow parts, but who knows? [ more ]
My allergies are egg and intolerance to dairy. I take a multivitamin “Naturelo One Daily multivitamin for women and Andrew Lessman Ultimate Calcium intensive care with vitamins D3 & K2MK-7 120. This combination seems to work for me. I can not take probiotics, it has the total opposite effect on me [ more ]
What are the vitamin D and calcium supplements that work for you? What are the allergens you deal with? I think I have a problem with dairy and many supplements (including the revered VSL#3 probiotics) are dairy-based. [ more ]
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J-Pouch ForumsGeneral Discussion
Yes. I eat 2 Metamucil wafers every morning. I am getting tested for c diff as the hospital was full and I had to share a bathroom with 12 other people. That was a real nightmare when my bowels decided to wake up and all the contrast was ready to come out. I have been taking Imodium before each meal and bedtime. My gastro dr. Has told me to stop Imodium for now as she thinks I’m not fully evacuating due to formed bowels. [ more ]
Two weeks seems like a long time for things to settle down, so C. diff is a possibility to consider (and a hospital is a good place to find it). Cipro would be a terrible choice for someone with C. diff, and it usually works very quickly if pouchitis is the problem. Have you tried psyllium? [ more ]
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J-Pouch ForumsGeneral Discussion
It’s not a normal (or common) consequence of J-pouch surgery. Do you know if they were high before your surgery? Does your doctor have an opinion about what’s going on? You don’t say how high they are, and that can make a difference. Normal ranges of labs tests provide useful guidance, but they aren’t god-given. My WBC and eosinophils always run high, perhaps related to autoimmunity, though I wouldn’t describe the values as very high. [ more ]
Sorry not EBC but White Blood Count [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Thanks for the info, hopefully it will be the end of this. [ more ]
C. diff is quite unpleasant. It’s possible that whatever antibiotic was used for the E. coli made you more susceptible to C. diff. A lot of folks have reported it here, so it’s not rare, but most J-pouchers don’t get it. It can be hard to eradicate, so I hope yours disappears without putting up a fight. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
....so I just had both a COVID booster and a shingles shot on one day and I felt pretty weird. When I was nearly fully recovered about a day and a half later, I got leakage at night. This is a kind of clear substance, not poop, but it's a bit smelly, and just a little bit comes out and it immediately wakes me up. It doesn't stain my bedclothes and isn't enough to get on the sheet since I wake up right away. I assume it's some sort of pus and associate it with pouchitis. Usually it follows a... [ more ]
Oh no! I'm sorry. Have you ever read Jini Patel's "Listen to Your Gut"? It has helped me a lot with trying out things to keep the illness at bay and manage my gut issues much more effectively. It was recommended by another person in this group. I'm learning about so many things from that book and from this group. I hope the Remicade helps! [ more ]
Well, it's official. After another scope, looks like I have Crohn's. Not sure if the vaccine just exacerbated things, or it was just coincidence. Lovely. Doc is going to put me on Remicade. Hopefully it will provide relief. 20+ years of UC, J-pouch, now Crohns. Someone up there doesnt like me. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
It's so good to read what individuals experience with their pouch. I also have never had pouchitis officially diagnosed, but I know what "itis" means and if things feel inflamed and there are other symptoms of mild infection like the fever, etc., I can guess that must be it or near it. When I have soreness in the pouch area or anal area but no other symptoms, I have found that drinking a small amount of aloe gel or juice in water a few times a day really helps soothe and heal the tissue. I... [ more ]
Symptoms of pouchitis for me include greenish or yellowish output that’s more liquid than usual and smells different, increased frequency, aching muscles, feeling a bit feverish, and abdominal cramps. I’m not an expert and I’ve never had it diagnosed officially as it was always mild and went away within a week. I would get it two or three times a year. [ more ]
Thank you for the info. In my case my JPouch hardly function correctly without antibiotics regarding consistency. I usually deal with watery diarrhea about 10 times a day. I would be ok with that but the gas elimination is the awful part. I noticed sometimes I bend over, I have urges to pass gas or doing #2. It works, but sometimes it doesn’t. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
J-Pouch ForumsWomen's Health & Pregnancy
J-Pouch ForumsK-Pouch Korner
Thank you so much for the information. I appreciate it. [ more ]
I was hoping soon but today the resident told me I have to start the clamping here. I am surprised as the stoma nurse never mentioned that. I am ready to go home soon as I have severe nausea and I’m not sleeping and would rather deal with that at home. But apparently I’ll be here until at least next Wednesday or Thursday. ladyTay, the purpose of the clamping is similar to what you are saying to grow the pouch in the last two weeks the catheter is in. I’m not sure why we do it this way, but... [ more ]
hum, wonder why the difference. I think starting to clamp after two weeks will help you once the 24/7 tube is out. maybe stoma nurse knows if this is the way they have alway proceed. when out of hospital? j [ more ]
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J-Pouch ForumsGeneral Discussion
Omg I replaced the enemas with water like you said the the burning was almost unbearable when it came out. Horrible. I’m laying down now and it’s still on fire. I bet something is going on up there. I have got to tell him. [ more ]
I haven’t even gotten that far yet. I’ll do that, but should it still be burning already? [ more ]
Don't use Fleet enemas. Empty the contents and replace with water and you will not have any issues [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsK-Pouch Korner
Thanks, Jan! You’re amazing! [ more ]
my stoma does bleed a bit but nothing to worry about. mine also drips and produces much mucus. I do use nursing pad, which is less than 25$ a year (target brand). there are reusable pads. don't know of medical ones that insurance covers. the medical ones/insurance covered, for sex, are bulky. ask stoma nurse. you can ask the stoma nurse as I simply can't recall, but possible you are producing more mucus because stoma, valve and everything else is still very tender. It took weeks, into two... [ more ]
Thanks, Jan! Luckily, my electrolytes have been regularly tested for years, so now is no different. I drink a lot of electrolytes and eat salt! Great too though! Especially since I take a lot of drugs to speed motility. after I’m discharged I’ll followup with the stoma nurse shortly after to come back and get the catheter removed and learn how to intubate. She told me I can contact her any time with questions. Through all my surgeries, my hospital (NOT community) stoma nurses have been... [ 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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