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J-Pouch ForumsHelp! Need advice now!
Feeling of poop but cant
SJ Sean Jenkins
Sean Jenkins I am good now, I think I just need some pot or valium lol, Im such a planner and I need to realize that my body has acceptable operating ranges. [ more ]
AMB I hope you're feeling better, but if it gets really bad, ER might make sense. j-pouchers often end up with some stricture around the loop (temporary) ostomy take-down site that can result in obstruction or partial obstruction. The surgical approaches to taking down the ostomy vary, but both ways they do it can result in some narrowing at that spot Not sure if you're in the same boat. Nausea and abdominal pain can indicate some partial obstruction. It's important to drink plenty of water or... [ 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
Marijuana
JesseP22JesseP22
CTBarrister True, but 2 imodiums do not help me get to sleep. 2 gummies helps me sleep and also slows down the bowel movements equivalent to effects of 2 imodiums. I don't get up at night to move my bowels any more. It's called 2 in 1 action. So the gummies are worth more. [ more ]
Pouchomarx Two Imodiums are so much less expensive than 2 gummies..lol [ more ]
Mysticobra Thanks CT. I just wanted to clarity I'm not against its use. I just ramle a little.... Well. Way too much. P. S. I donated to norml back in the 70's. They sent out a little MJ leaf pin. In gold. Not real gold. Wish I knew where it was now. I was proud to wear it. Nowadays it wouldn't be seen as radical wearing it but I wore it all the time. Lol. [ 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 ForumsMen's Health
Chronic pouchitis and exercise.
C CharlesF
Lee-squire My friend I don't know what I can say to you. It's a different life for us it seems. I think you really need to enjoy the "good" days. It sounds like you are very active and I commend you with envy. Sleep is a nightmare, and key to energy levels. You obviously have immodium ? I use it religiously at night to try to fight off the night shift on the toilet. I just keep hearing that time is what it takes. But no idea how much. I don't even know if we ever get "good" again. It's a living hell... [ more ]
lholdem I am not a man so feel free to dismiss my input… but I relate to the desire to live life to the fullest after somewhat reclaiming my health after colectomy surgery. I was so happy and relieved to not be controlled by my symptoms, but also experienced simultaneously some new versions of depression and anxiety. Honestly I think years of dealing with chronic illness takes a collective toll on our mental and physical health, and it takes time to fully “recover” and recalibrate. And even feeling... [ more ]
ehbraun This could be completely unrelated, but i have a lot in common with your situation. So far, there is no real answer, but I’ve been focusing on sleep recently. My weight also fluctuates, and i do exercise. When I’m heavy, i experience obstructive sleep apnea. I was diagnosed with a sleep test, and got a c-pap. I found that something so simple as getting better sleep took the edge of of all these symptoms. I still have 10+ bowel movements a day, and wake up several times a night to go to the... [ more ]
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J-Pouch ForumsGeneral Discussion
Hey Guys, I am going to do a 7 year vegetarian anniversary update on here
FM Former Member
Former Member Here is the review for the 7 year vegetarian review https://www.j-pouch.org/topic/...eview-yessssuuuuhhhh [ more ]
Sara Marie @Susan1000, I really appreciate you sharing! Whether or not what works for you works exactly the same for me isn't so important, but rather that you found these things that help you, and that I might try them. We are really the only ones who can help each other. The medical community just doesn't seem to have the experience or training to do that. Thank you! [ more ]
Sara Marie ❤️
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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 ForumsHelp! Need advice now!
Need help w/ gas and odor
MM Mark Miller
Former Member ❤️
Kelleydg Yeah, at the doses of husk that I'm taking, I prefer not to add all that extra sugar to my diet. I have also read that stevia is better for your health than the aspartame. Costs more though. But it's natural. Although we are pooping without colons: so "natural" is just so overrated for us. Lol! [ more ]
roadshow For me sugar increases frequency more than almost anything, except maltitiol which I avoid. I've never had any problems with Stevia or Splenda. I'm also on a low carb diet and sugar is a big no no. [ 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 ForumsGeneral Discussion
Alcohol
E Emilio
Chook2 I just saw a video about how to pour beer properly and it said to pour the beer fast so it has a big head on it,that way there's less gas in the beer and less bloating in the stomach. [ more ]
TerryH I’m 16 years post take down. I can handle one or two beers, but find they fill you up with gas. I usually stick to rum and seven. [ more ]
BK 123 Recently I have really gotten back on the horse, I'm a bit over 1.5 years since takedown. In the beginning I could only drink one beer as it gave me horrible gas/bloating. I stuck mainly with liquor, particularly vodka, and wine. Just last night I had four beers in a two hour period at a work event and had no pouch problems, felt a bit "full" in my belly if anything. Now I have no problems drinking anything, although I noticed my tolerance took a hit. As people have noted, take it slow at... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Gathering info before trying to get pregnant
K KatyT
OscarThePouch We opted out of IVF. Can't afford that financial risk and im fairly certain the hormone treatments will send me back 10 years in mental health recovery. Adoption won't work because I've been to psych wards too many times to qualify. I think if my tubes are blocked its game over and I will have to accept not being a parent. Ulcerative colitis stole my career and the surgery stole motherhood. It's ok...i think I am still a person without a job or children....my husband likes me at least. [ more ]
Ingrid I had my J pouch surgery when I was 19. I had 2 kids at ages 33 and 37. We did have fertility issues, but I don't think it was because of the pouch. My pregnancies went totally fine! Just stay hydrated! [ more ]
KatyT @HeatherF21 It was similar for me—ultrasounds and other scans showed a few small pockets of trapped fluid, one ovary is mostly stuck in place and one tube is partially blocked. They assume a combo of surgical scar tissue and endo. I’m on a wait list for surgery to remove some of the tissue. I was told the only way to know definitively it’s endo is to go in surgically and look but all signs point that way for me. [ 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
Suspected narrowing - any advice?
L Lflower1991
Scott F Occasionally antibiotics help even when there’s no obvious pouchitis. If all else fails you could ask to try an antibiotic course - Cipro is the most reliable, but some folks prefer metronidazole (Flagyl). [ more ]
Lflower1991 Just an update on this. after attending my hospital for my procedure, the specialist found no issue with narrowing, and therefore didn’t do any dilation on the day. Whilst I was informed this is good news for me, I’m still experiencing pain and urgency with difficulty emptying. I’ve been booked in for a CT scan to check that there isn’t a dilation at the top end of the pouch, but they aren’t expecting this to be the case. The pain and urgency is a real problem for getting a good nights... [ more ]
Scott F Incomplete emptying can feel like reduced pouch capacity, even though the pouch itself is fine. You can’t add much to a half-full bucket. [ 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 ForumsGeneral Discussion
Special Enema Kit for J-Pouch?
JulieBakerJulieBaker
CTBarrister Yes, it's in the laxative section of every pharmacy and isn't particularly expensive. Make sure you get the clear colored liquid which comes in cherry and lemon I think. I use the Rite Aid brand which is visible in this link: https://www.influenster.com/re...avor-10-fl-oz-296-ml [ more ]
KennyJG44 @CTBarrister is Mag Citrate generally available OTC ? [ more ]
3Cutedogs Hi! I am not sure if this will help but thought I would share. My J-Pouch has never emptied completely. Several years ago, my surgeon at Mayo Clinic suggested I start "irrigating" my pouch. They provided me with a good catheter and catheter tip syringe: 60 ML needle nose syringe which I fill with shower water while I am showering in the morning and/or evening. I insert the catheter in to my Pouch and then insert the water filled syringe into the catheter. My J-Pouch immediately starts... [ 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 ]
See all 25 replies...
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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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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