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August 2022

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J-Pouch ForumsHelp! Need advice now!
Right side pain- CT scan “normal”
A AmyH
duck11 I had similar issues and a pelvic floor therapist really helped. All the nerves and tendons and such get shifted around in surgery and from adhesions after, and I was amazed how much pain it could cause. Similar to what you are saying, I felt like I had a pinched nerve or twisted muscle. It took a long time and still acts up, but now I know stretches and treatments and can manage it myself. I highly recommend it assuming your surgeon doesn’t think anything more serious is happening. [ more ]
AmyH Jaypea, thank you for your response. My doctor does think it could be nerve related. I have had sciatica pain the past with a back injury but this feels different. It is in the front right pelvic side and feels like a strong cramp that won’t let up. [ more ]
Jaypea Hmmm....radiating down your leg? The first thing I think of is nerve damage like sciatica. [ more ]
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J-Pouch ForumsGeneral Discussion
Nightmare at NYU
KennyJG44KennyJG44
athena Hi Kenny, I’m so sorry you’ve been dealing with this, and the lousy care in the ER (which is not uncommon—they can treat heart attacks and strokes, but this stuff is kind of specialized.) Cuffitis sucks. I had it for four and a half years, finally had a pouch revision that got rid of that tissue so that I didn’t get cancer—but that injured my internal sphincter, which is no fun to live with. I couldn’t get the suppositories in that they wanted me to treat with, it was so inflamed when I had... [ more ]
Maverick Plus Good to know that you finally got answers. Do you have a new GI doc now? That would be of great help to you in the future. [ more ]
KennyJG44 Hi @SadieM1210 - Apologies - probably published results on another thread. Scope showed moderate pouchitis, which I've had in the past. But more importantly, showed an acute cuffitis, which I've never had in my 20 years since surgery. Definitely gave me a new set of symptoms. Flagyl helped clear that up - though I feel like I"m still dealing with residual inflammation of pouch/cuff. [ more ]
See all 22 replies...
J-Pouch ForumsHelp! Need advice now!
I feel like I’m suffering
S Shy
Rudy I am so thankful that I found this thread, not just for the I information I receive, but also as a way to offer support to our “pouch pals.” I had my surgery in 1981 at the Mayo, and it seems I might be the old-timer in the group. I initially posted to see if others have had any bladder related issues or issues concerning abdominal scar tissue. I was part of a group that was being tracked for several years, and it seems that the surgery has evolved. Shy, hope you’re feeling better this week... [ more ]
Maverick Plus Any updates? I sure hope you've found some answers! [ more ]
girlt Hoping to hear how you are soon, Shy, whatever the case. There is support here for you to help keep you from feeling alone, and maybe practical advice to help as well, if you want it just ask - what foods to eat and what to avoid, supplementation, products to soothe pain, etc. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Vacation Tips and Advice
MiguelitoMiguelito
Former Member ❤️
RHolt On the travel trips, I am sure it is too late, but I do what the others have suggested and I also chew pepto bismol tablets several times a day because it seems to calm my intestines down, especially in gas production, which is what can make bathroom urgency an issue for me. As for rehydration needs, I use something called Vitalyte when I go backpacking. It has elecrolytes but is not as strong tasting as gatorade or some of the other electrolyte formulas. During the work day (not traveling)... [ more ]
Linzalisha Thank you so much for both replies. 💕 [ more ]
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J-Pouch ForumsPouchitis
Time for antibiotics to take effect
J joebucket20x6
Downtownfan Low dose Cipro does not work for me, and I take 1000 mg a day. As soon as I try to lessen, pouchitis comes back with a vengeance. If you can boost your dosage, that might help. I've been on Cupro/this dosage for nearly one year and it made a HUGE difference after 3 years of hell (pouch in 2020). [ more ]
peachykeen I take Xifaxin for my pouchitis when it appears. Thankfully, it is not often now. Previously ( a few years ago) I had 2-3 bouts per year. This medicine is not cheap in the U.S.A. I purchase with a Rx from a Canadian pharmacy. My J-pouch is 21 years old. [ more ]
Scott F If I’m reading this right then Flagyl alone might do the trick for you. It’s also possible that the Cipro dose is just too low, but I think I’d try Flagyl alone at the dose that worked for you in combination. If that doesn’t work I’d retry the original effective dose sets of both. IMO the time to try reducing the dosage is when things are great - that way you can tell if the dose has gotten too low. [ more ]
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J-Pouch ForumsGeneral Discussion
Permanent Ostomy
K KR
Former Member I believe it is possible to remove the leftover rectum, as a pouch redo surgery. It could be that they left too much of the rectum, which UC can continue to attack. You would again have to have 2 surgeries. Remzi at NYU is the best surgeon for a pouch redo. At least he can give you a consultation. [ more ]
Fight like a girl Hello KR I'm at a point after 33 yrs as a j poucher to go ahead and get as much info from surgeon at Cleveland clinic to get the facts on how removing the j pouch will be done. I just don't think I can keep on being a j poucher the struggles are exhausting me. Being a current breast cancer patient biologics are too risky right now for me. I was on entyvio for 2 yrs after my mastectomy but eventually body wasn't responding to it & pouchitis & 5 chronic bleeding ulcers on pouch are... [ more ]
Pouch2021 KR, I just had an appointment with my surgeon to plan next steps if one last attempt to deal with my sinus tract doesn’t work. It is a very difficult decision. In many ways much harder then the original surgery as I’m not critically ill. The original surgery wasn’t really a choice. Now, I can still work full time, yada yada, so it feels like “should I just stick it out for one more procedure, and another?” Where does it end? You’re tough for putting up with it for so long. I’m only 14 months... [ more ]
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J-Pouch ForumsGeneral Discussion
something found in DH pet scan-small intestine cancer? scar tissue?
labloverlablover
lablover Yeah, it was in the area where the stoma used to be. Hopefully, tomorrow we will find out. [ more ]
lclassen Lablover... Praying that the biopsy is clear. And thankful, too, that they didn't need to mess with the small intestine. Please keep us updated. 😊 [ more ]
lablover Update: DH was operated on today. It was done laproscopically. thank goodness they didn't have to go in the small intestine, so the small mass was just above it, taken out and will be biopsied. [ more ]
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J-Pouch ForumsGeneral Discussion
Just not worth it
EI Eric in Seattle
lclassen I agree with talk therapy... It has helped me immensely. I stress about my job sometimes, too. And you're right... It's not worth it. Remember that you and your health are far more valuable than a job. 😊 Praying that you will find the right balance that will keep you healthy - both mentally and physically. [ more ]
Eric in Seattle Thank you. I just moved from my rectal surgeon to a new gastro. I’m also going to see if our healthcare includes talk therapy. It sucks that I’ve worked all my life and I’m hoping I can keep my job until March 2023 when I’ll be 65. So much for a social contract with employers. [ more ]
Bubba1028 Sounds like you might benefit from talking to someone. Do you have anyone to talk to? You do have a lot going on.. [ more ]
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J-Pouch ForumsGeneral Discussion
Restrictions & Stelara-from anyone on it?
Y ytcrockpot
Bubba1028 My doc hasn’t given me any restrictions but to be careful bc it lowers immunity. I do mask up in large crowds but not in all circumstances. [ more ]
ytcrockpot @Portia thank you so much, hearing this gives me hope that it just might be helpful to me. I mask up for the most part. Glad your doing so well on it [ more ]
Portia Hi, @ytcrockpot - I've been on Stelara since February of this year. Before starting Stelara, I had to undergo immunizations for a bunch of illnesses including hepatitis and pneumonia, but otherwise my gastroenterologist basically told me to live my life once I began feeling better. I live and work in Greater Boston, so I continue to mask up on public transportation--as well as in supermarkets, my place of worship, and other large public indoor settings. I work for an employer which requires... [ more ]
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J-Pouch ForumsGeneral Discussion
Sedation
KennyJG44KennyJG44
KennyJG44 They actually filled the pouch with air during the pouchogram, as well. Odd, but not uncomfortable. Received the official biopsy results from the pouchoscopy, for those interested in the science of it all: 1) pouch, biopsy: small intestinal mucosa with active enteritis, focal erosion & mild architectural distortion; negative dysplasia. 2) distal pouch, biopsy: small intestinal mucosa with chronic active enteritis and erosion; negative dysplasia. *no definitive morphologic evidence of... [ more ]
CTBarrister I mentioned in my second reply above that the pouch is filled with air during the procedure. It's done in every scope as an industry standard: You probably were not aware the last time, although my desire to pass gas after scopes has been pretty consistent. The most prolonged farts I have ever had were after scopes. Some can last 10 seconds or longer. [ more ]
KennyJG44 Thanks All - yesterday's pouchogram went off without a hitch. Strangely, after filling with liquid (and emptying), they filled with air and took more photos. Is that new? Didn't do that last time. Anyway, pouchogram showed no twists or prolapses. Only possible negative shown were possible kinks due to adhesion/scar tissue; GI thinks they might have been there for quite a while. Additionally, biopsy from last week's scope show some pouchitis in addition to the cuffitis being treated. We... [ more ]
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J-Pouch ForumsGeneral Discussion
Flagyl
KennyJG44KennyJG44
SteveG As long as your output does not get too hard, I would not mind. You may try to keep your stool soft with psyllium husk and drink enough water together with it. Probiotics could also help to prevent pouchitis / cuffitis from returning, I would start them before finishing the antibiotics course. [ more ]
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J-Pouch ForumsGeneral Discussion
OTC Allergy meds with a Jpouch
A AmyD
Pouch2021 It’s official. I’m an idiot. I’ve had bad allergies all summer and have been taking my usual Allegra 24h with little help. The constant sneezing has me feeling like my uterus and pouch are going to fall out all at once. I avoid all other time release meds so not sure why I missed this one. What do you all take for antihistamines? Are there any that are immediate release? [ more ]
tf What symptoms do u get with allergy meds? I can't take Clairton but Zyrtec seemed ok with me. [ more ]
New577 Hi Amy, I avoid all extended release meds as they all screw me up. that said, I like the Claritin reditabs, they work great for me. [ more ]
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J-Pouch ForumsGeneral Discussion
How long for Stelara to work? And increase of dose?
BM boy's mom
ELH I can't remember how long it took to kick in. The transition from previous medicine was smooth. I'm taking Stelara 90 mg per shot. [ more ]
boy's mom Thanks ELH. How long did it take for the Stelara to kick in? And what level of the medicine do you need to be at? [ more ]
ELH I have been on Stelara for 3 years after other medicines eventually stopped working. I'm getting an injection every 8 weeks. I get tested for it occasionally, and one time my doctor changed it to every 4 weeks for few months, until I was back to acceptable level. Stelara is insanely expensive when you don't qualify for the discount. [ more ]
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J-Pouch ForumsGeneral Discussion
New to the jpouch life!
X xwaterice
xwaterice Sometimes I miss my ostomy too, honestly. But I also remember that the first months with it were seriously terrible (and back then, I kept saying I wanted my colon back) and the predictable part of it came waaay later, so I guess it will be the same with a jpouch. I mean, I hope so. I feel you on the bed part, I wear tampons at night and when I go out because they make me feel safer. I just hope nights will get better because sleeping bad makes me tired the whole day. Glad you’re all well now!! [ more ]
Jaypea It sounds like you are doing amazingly well. I remember my first few weeks at home. I wanted my ostomy back so badly because it was predictable and I had grown used to it. I don't think I slept through the night for the first 6 months with my j-pouch. I wore briefs to bed for a very long time and used an incontinence pad on my bed for about a year. I am now 9 years post j-pouch and loving it. [ more ]
xwaterice Thank you for your reply! Well, resisting the urge as much as I can is the instruction I was given surgeon told me to act like I have no bathroom near. I was just wondering about the details! [ more ]
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J-Pouch ForumsGeneral Discussion
Privacy With J-Pouch
JI Jim in NYC
CTBarrister Jim, You mentioned a complaint by the neighbor to the board or management of the Co-op, but you do not mention what action the board took based on that complaint. Did they send you a cease and desist letter? What action did they take? If you were not asked to cease and desist from excessively flushing the toilet, it seems to me that there is nothing actionable. Neighbors in condos and co-ops make complaints all the time and nothing happens with them. I only remember one cease and desist... [ more ]
ytcrockpot Hi, I’m not a lawyer so I don’t know of a specific law, but In NYC co-ops fall under a different entity. Complaints against the board go to the state attorney general, where as a regular rental apt would go to the city. I believe co-ops are owned by the tenant, owners would have to get their own legal help. If you’re worried about her trying to get you out, you may have to use your medical condition and discrimination. I would certainly contact the landlord tenant lawyer to get some advice... [ more ]
Jim in NYC I appreciate the time all of you have taken to respond to my post. This group is fantastic! ytcrockpot Do you know of any specific NYC Law that she has violated? Thanks! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Enema for a scope
Patricia _Patricia _
Scott F Pouchoscopies are generally quick and easy. It will be over before you know it. [ more ]
Patricia _ Yes [ more ]
Scott F The enema tip is generally quite small, so it’s unlikely to stretch anything. If it’s being administered to you make sure the volume is small, about 8 ounces/230 ml. If the staff got confused and thought they were cleaning out a colon a much larger volume might be used, and that wouldn’t work with a J-pouch. Is this your first pouchoscopy? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis or Cuffitus
Patricia _Patricia _
Patricia _ Thank you. [ more ]
Scott F You can get a false negative result for C. diff when on (or recently on) antibiotics, but I wouldn’t assume one way or the other. It’s most commonly treated with vancomycin, but can sometimes be very hard to get rid of. Very persistent cases are treated with fecal transplant. Other antibiotics for pouchitis include rifaximin (Xifaxan), Tindamax, Augmentin, and a few others. If antibiotics don’t do the trick then biologic medications like Remicade, Humira, and Entyvio can be used. [ more ]
Patricia _ Scott, What would be the treatment for C. Diff.? If it does not show up on a test because of the antibiotics, do I have it? What would be the antibiotic to use for Pouchitis if Cipro + Flagyl does not work? [ more ]
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J-Pouch ForumsPouchitis
Total loss of appetite - pouchitis still active?
O op1988
Kushami ❤️
Scott F There are other options, but Cipro is probably your best choice. Tendon ruptures really are uncommon - I’ve been on Cipro since 2008. I hope you feel better quickly (and Cipro often does that). [ more ]
op1988 I had my pouchoscopy already today. Whole pouch was clearly inflammed and ulcerated. Small intestine looked apparently normal so thats good news, although they of course see only the small part at the end. Regarding my not-so-typical general symptoms, the plan is to check if the situation improves as the pouch starts to heal and if not, then have an gastroscopy. I was prescribed a 4 week course of Cipro. I've been avoiding Cipro and managed to deal with the pouchitis symptoms with Flagyl /... [ more ]
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J-Pouch ForumsHelp! Need advice now!
What the ?????
Mema 1Mema 1
Mema 1 Thanks, Doug, I'm wondering the same thing. I think I feel better this morning but will know better after I have something to eat. I've been on Cipro for about four years, but my doctor doesn't have me rotating them and I think that it's stopped working. [ more ]
Doug K I wonder if you have a little blockage, and only liquid can make its way out. I hope you feel better. Maybe try to drink a lot of water and flush it. What antibiotic regimen are you on? I have needed an antibiotic for about a year on my JPouch also. Mine is only 16 months old. [ more ]
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J-Pouch ForumsPouchitis
Pouchitis… again?
LB Laura Bailey
Laura Bailey Thank you so much, I will definitely give that a try! [ more ]
PouchLogic Laura are you still taking Visbiome? You may need to take more for a longer period of time after getting off the antibiotics. I usually double up Visbiome for a week or so after being on antibiotics. I take Visbiome daily and cbd oil, adding the cbd oil has definitely improved my ability to stay off antibiotics. My GI said that this last scope was the best he has seen for me. Good luck [ more ]
Laura Bailey Thank you so much for sharing! [ more ]
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J-Pouch ForumsGeneral Discussion
Menopause
L Leeloo
Leeloo Sara Marie, same situation with rough digestion during cycles. That’s why I wanted to share that there may be a light at the end of the tunnel. 😄 [ more ]
Sara Marie Thanks for sharing! I noticed that my cycles stirred things up in the pouch, and before that, in the colon. Things were more likely to be sore, I was more likely to be gassy or have the runs, etc. In addition to appreciating the decreased effect my cycles have on my guts as I get older, I'm so grateful not to be in the midst of my breeding years during this time in the US, especially since I don't live in a free state. But I'm doing a lot of getting out the vote, which helps a lot with the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Dallas surgeon for j-pouch
JH Jessica H
Mysticobra Your welcome. And thank you too. My journey is done. I hope yours goes well. And you found a good surgeon. Good luck on your journey. Richard. [ more ]
Jessica H Thank you so much for your response - I'm sorry it didn't work out for you - hoping it might for me, but always prepared. I think I've found a doctor in Dallas - Jefferson Hurley and I'm going to have a consult with him. My surgery was an emergency and I didn't get to pick the surgeon who removed my colon and I absolutely do not want to use him for anything else. Good luck in your journey! Jessica [ more ]
Mysticobra Although no fault to my surgeon. My pouch didn't work. She was very good. (anybody dealing with me has to be good. I'm not an easy person to deal with in surgical situations) But she is in Ft. Worth. Not sure about Dallas I'm sure they have a competent surgeon there. Closer to home the better If you need her name I can pm you. She may know of some there. Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
Recommendations on second/third opinion
P Pouch2021
Pouch2021 Thanks all for the recommendations. Anyone have any experience with MRI defecography? Where did you have it done and was it helpful in troubleshooting pouch issues? [ more ]
AMB @Pouch2021 Cleveland is very user friendly, especially for visitors because there's an attached hotel. Look up Dr. Tracy Hull. You can call the office directly to schedule. Shen's office was having IT issues earlier this month. I also had an unusual delay in receiving a call back. (A trick for Dr Shen's office is to email his staff to schedule. They get right back to you.) He does do video visits. Right now he is scheduling out to October, I was told. if you're heading to NYC, Mt Sinai would... [ more ]
ytcrockpot NYU has an IBD center, for me they have been excellent. MT Sinai also has an IBD center. The Mayo Clinic in Rochester Mn is a great place for 2nd opinions good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Obstruction or something else?
A AMB
AMB I only ate the heart of that artichoke and the soft layer of the leaves! But that was enough. I wonder, too, if psyllium husk later than usual that day may have added to the problem. Dr Shen's NP confirmed that these issues associated with narrowing at the surgical site are pretty common. Her advice was to stay on clear liquids a few days, advance to regular liquids and then stay on soft foods with no fiber until the procedure 9/6. And if I run into more problems to head to NY Presbyterian's... [ more ]
CTBarrister AMB, glad to hear it passed without resort to vomiting, or intubation of the dreaded NG tube. Important question: did you inspect your BM to see if there were undigested artichoke leaves in it? The nature and quality of the BM may have provided some clues on what was causing the obstruction. If not, I am sure Shen's upcoming scope might shed some light. [ more ]
AMB Thanks to all who provided guidance and support. A call with the (better) GI in the local group last night ended with a recommendation to try a dose of Miralax in the morning. It worked. Still sore and will stay on clear liquids a while more, but the Miralax did the trick to clear the area of obstruction, I think probably entirely. If I get any further insights on this from Dr. Shen's group will post here. But for now - another survivor. [ more ]
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J-Pouch ForumsGeneral Discussion
Advice for pain / pressure
KennyJG44KennyJG44
KennyJG44 Thanks CB, I did actually try that a few times last week, not too much luck. Decided to stop messing around, as whatever is going on might be something I can't fix. Currently sitting in the ER at NYU. [ more ]
Cb2009 Hi there! I have had problems emptying as well and my surgeon recommended a warm tap water enema for relief. I just bought a fleet enema, emptied it out and filled with warm tap water. I insert the enema just far enough in, a use a couple ounces of water. This brings me instant relief without having to strain. I use it whenever I am having issues with having to strain. [ more ]
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J-Pouch ForumsGeneral Discussion
C diff
C Cb2009
ytcrockpot Sorry I don’t remember, it was 2yrs ago. I did get it again a year later and the vancomycin took care of it. what the doctor does for me now, is, When I take an antibiotic they also give me vancomycin to take with it, preventive medicine The worst thing you can do is worry, so try to take it easy, relax and the meds should kick in soon [ more ]
Cb2009 Thank you! That helps a lot. Do you remember, did you do two rounds of the same duration and dose to clear it up? Or did they increase it the second time? I feel so uncomfortable and exhausted I hope it kicks in soon!! [ more ]
ytcrockpot Hi, Sorry to hear you got cdiff. Vancomycin will help, it took me 2 rounds of vancomycin to get rid of it, but once you get it, your susceptible to it. I got cdiff from taking too many antibiotics for UTI’s. I was chatting with my doctor last week, he told me that Cdiff is much worse for people with colon’s. I had my Cdiff for a very long time without even knowing, until I found the right Doctor who tested me for it. I’m sure once the vancomycin kicks in you’ll start feeling better soon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need to see a Dr
KennyJG44KennyJG44
KennyJG44 I thought I might have caught a break today - I have a fellow JPoucher who is unfortunately a frequent patient at NYU, and he was kind enough to get in touch with one of the PAs on my behalf. That ended up getting me in touch with 3 different admins, all of which told me there were no immediate openings, and that I should take an appointment and go on the wait-list. That was after I explained to them the urgency of the matter, and that I was already on 2 waitlists. I can't believe it's so... [ more ]
KennyJG44 Thanks @Scott F - not a bad idea; will try anything at this point. [ more ]
Scott F I’ve sometimes had success getting my primary care doctor to call the specialist’s office directly to let them know that an urgent appointment is needed. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can Visbiome be used as an enema?
O OscarThePouch
SteveG You first need to sort out if it is an anal fissure or cuffitis / pouchitis. When I had an anal fissure I believed for weeks that it was cuffitis because I couldn't locate the pain clear enough. If the pain is mainly during or after a BM and like a permanent burning then it is likely to be a fissure. There is usually no blood. Using a bidet or water jet should help to clean the fissure. Cuffitis on the other hand feels like a pressure pain that tells you to go to the toilet more often than... [ more ]
Scott F I’m sorry, Gina - I intended no judgment. You expressed financial concerns, and misunderstandings about ACA insurance are quite common. I was just trying to help, in the event that help might have been useful. I hope you find some relief. [ more ]
OscarThePouch Hi. Scott F thanks for your concern but I am insured and prepared financially for a child. (And this is not a thread wherein I was seeking pregnancy or financial advice.) Your words did come across a bit patronizing and judgey so I feel a little on the defensive now. The implication that I'm irresponsible would immediately seem hilarious if you knew me in real life. I am just stressed out. The way I type on the internet makes me sound like a petulant child but usually I only come onto these... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Unfamiliar complaints
KennyJG44KennyJG44
Sara Marie I also employ the laying down in the stomach to get the gas out. One time I had a thrombosed internal hemorrhoid that hurt like crazy. The pain also radiated out into my butt cheeks and it hurt to sit. I have had fissures that make these things painful too, but that thrombosis was the worst. I used aloe Vera to help heal the butt pain. It took a long time to heal. [ more ]
KennyJG44 I find it difficult to explain. I'd say, the is a dull ache/pressure that is always present. I feel that is at the bottom, but internal. It does but feel like an inflammation. During and immediately after BMs, that dull feeling is amplified to a much more throbbing like pain, both internally, as well as right at the anal opening (I think). It's such an obnoxious feeling, that is hard to pinpoint. Also at that time, it actually pains me to sit on the toilet. That feeling is more of an ache,... [ more ]
Scott F If you’ve been straining to empty for an extended period then it would almost be surprising if you didn’t have hemorrhoids. That being said, I can’t tell from your description exactly where the pain is. I’ve never seen a diagram with the “actual butt” labeled. It the pain external? Along the anal canal? Does it move or stay in one place? Does anything make it better (or worse)? Did it change when you passed that gas? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stomach ache almost always
EI Eric in Seattle
Jan Dollar Peppermint oil supplements help some. Worked for me for a while until it was clear it was chronic pouchitis. Jan [ more ]
Sara Marie Sure does! I got the Zot Organic Licorice Original Gluten Free Sugar Free. They are tiny little lozenges, and they're great! You can also get them with sugar and wheat if you think those things are OK for you. I try to stay away from sugar unless it's unprocessed (like honey, etc.) and I bloat up if I have wheat. But you might not have those issues! [ more ]
Eric in Seattle Liquid? Capsules? Amazon has everything. Of course there is good all fashion black licorice candy [ more ]
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J-Pouch ForumsHelp! Need advice now!
Age
BA Bill A
Doug K Hi Bill A, There are lots of tips about lowering frequency a lot. Anti Diarrhea meds, fiber, antibiotics, anti motility, and physical therapy. Taking the JPouch out is certainly a big move. Many people are successful at it, but it’s a big deal. I would try to improve the function to the best of my ability first. Best of luck - Doug [ more ]
Scott F Bill, I don’t know what this surgeon might or might not have observed, nor what sort of history you have with this person. I wonder, though, if this is one of those surgeons you should run like hell from. At the least it might be time to switch to a good gastroenterologist, who would recommend a consultation with a surgeon if the need arises. I don’t know what you’ve tried, if anything, to reduce your daily toilet trips, and you didn’t ask about that. We’re here if you could use some ideas. [ more ]
Bill A Thanks for replies. I did not know it was difficult operation. Surgeon simply argued at my age it was wiser. [ more ]
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J-Pouch ForumsPouchitis
Mild Chronic Pouchitis
HE herb ear
Scott F As CT said, it’s not that biopsies are always irrelevant, but a biopsy that shows mild inflammation in a pouch that both looks and functions well is not worth paying much attention to. It’s a common finding that typically doesn’t lead to anything worse. [ more ]
CTBarrister Herb: biopsies that show some mild inflammation are irrelevant. I have had a J Pouch for 30 years and have had 30 years of biopsies showing inflammation. Unlike you, however, my inflammation is visible on scope and needs to be treated. A biopsy that should worry you is the one that shows dysplasia in your rectal cuff. I presume they biopsy your and everyone else's cuff on scope because that is the only colonic tissue in your body and the place where a cancer is most likely to start, although... [ more ]
herb ear I really respect your opinion as I have read your posts over the years. Why are biopsies irrelevant? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help with hemorrhoid problem
D daviwyat
Kangaroo I find Ilex paste is the best to stop the itching and burning. Also, bath salts intended for hemorrhoid relief help a lot with the discomfort. [ more ]
New577 Just as a follow-up, I find two products to be helpful. 1. PrepH (or Walgreens/cvs brand) cooling gel. Straight up prep h is worthless for me. 2. Desitin brand cream. Highest level of zinc oxide and seems to work quickly. [ more ]
daviwyat Thanks [ more ]
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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.

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

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