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J-Pouch ForumsOstomy & Skin
Abdominal pain - stricture or diversion colitis?
SaffSaff
Saff Hey Te Marie, I think I am not far behind you. But I can see from your new post that you have scheduled a date for the surgery so you are a step ahead. After so much surgery already, its not easy electing for more is it! I hope it goes as well as possible for you and I will follow your post to hear how you are going. [ more ]
TE Marie SAFF and all, I am going to contact my surgeon to have my j-pouch removed. She suggested it before the diversion surgery but I was hoping to avoid that. I have had 5-6 rounds of antibiotics for UTI's since my surgery 8/31. I kept attributing my abdominal pain to them and not my j-pouch. Now I know my j-pouch is causing the pain as the UTI appears to be finally gone and I'm still in pain. It's like I still am using my j-pouch, except I don't have to give myself enemas. I have been taking... [ more ]
Saff HI Dewyj and Te Marie, sorry I didn't respond earlier - I've been away but thanks for your responses. Yes DEWJY it is a long time to have diverted pouch, I'm really just postponing the surgery to have it removed. I had hoped I wouldn't need to do it, but my surgeon thinks it may be better to take it out. He did release the stricture recently when he did a scope (which I think involves cutting it). I am just trying to understand what could be causing the ongoingy pain. But its interesting to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
? Obstruction
J jmatec21
Ray C Welchol is seems to be not recommended for people who have bowel obstructions: Do NOT use Welchol if: you are allergic to any ingredient in Welchol you have a history of certain bowel problems (eg, blockage, paralysis, slow movement of the bowel muscles) or major stomach or bowel surgery, or you are at risk of bowel blockage you have very high triglyceride levels or a history of inflammation of the pancreas (pancreatitis) caused by high triglyceride levels [ more ]
deweyj NG tubes or I love the expression, hose down the nose suck but they work. and Jeff's mom is spot on, regarding an ileus which may occur post operatively, CT scan process the nature of the dye seems to stimulate and awaken the bowels I had a friend who's surgeon did this for her and bam, floodgates opened. but as Sharon well described there are various reasons for obstructions so best to try and identify the root cause. this unfortunately is not always a simple task. good luck and I hope you... [ more ]
Angie Wilson All great advice - have had obstructions that have passed on their own in hospital. I don't mind the ng tube at all - I always ask for dilaudid when this happens. So ng tube does not bug me. It has usually take 4 - 6 days to go away - the IV keeps you hydrated. I hope this works out for you. I had one time when I had to have surgery - but only once and that was also due to a multitude of other factors - sure hoping no surgery needed. The pain of an obstruction - especially as I tend to stay... [ more ]
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J-Pouch ForumsGeneral Discussion
cramping, gurgling, gas pains
M msbea430
Deanna6 I haven't been able to take any additional fiber because of the severe gas pains and forcefulness of the bm's causing pain. i use a lot of essential oils for various reasons but young living carries a peppermint essential oil and also capsules that you would put it into to ingest. Peppermint is calming for my digestive tract and I even just rub it on my tummy (a couple drops mixed with a carrier oils Cush as coconut oil) for relief. [ more ]
Tanner After 32 years of having a jpouch. I have had it all. VSL3 is a big help bit costs 46 dollars for fifty at Costco in Calif. Also. A hot water bottle and laying almost upside down on a couch along with massage helps cramping and gas and sometimes It becomes a blockage and all of this works most of the time so you don't go to the ER ALL the time. Hope some of these tips help. Good luck, Tannet [ more ]
Tanner Re: cramping, gurgling, gas pains [ more ]
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J-Pouch ForumsGeneral Discussion
What is a mesentary embolism?
skn69skn69
skn69 Thanks Jan They had him on very high doses of anticoagulants for 10 days and then finally took him to surgery...now he is still on an NG tube and suffering but like you said, he survived (5.5hr surgery). Keeping fingers crossed Sharon [ more ]
Jan Dollar The mesentery is the vascular system of the gut. An embolism can be a blood clot, a chunk of plaque, or a foreign body. If there is an arterial embolism to the mesentery, it is a life threatening event, necessitating emergency resection of the affected portion of intestine. The symptoms start out the same as a severe obstruction. An embolism in a vein causes less severe symptoms and less damage, but surgery is still likely necessary. The fact that he survived the event and surgery is great... [ more ]
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J-Pouch ForumsPouchitis
I think I have pouchitis...please help!
T tiffanygoad
Maximus Curious....anyone here tried the "Anti-Inflammatory Diet [AID]" to see if it has reduced or eliminated symptoms? I eat healthy 80% of the time [salmon, ahi tuna, kale, beets, greek yoghurt, sauerkraut, chicken, eggs, pomegranate, chia seeds, etc]...but do have my cheat days with pizza and beer...would be interested to hear feedback if the A.I.D. OH...one more thing I just added to my diet.....do some research on "Redmond Clay"...I take it in a glass of water every other day...supposed to... [ more ]
Maximus I had my J-pouch "installed" circa 2002...and was feeling great after the rehab...back to a normal life...had pouchitis a few years back and was put on some meds for a little. Then I got off them and haven't been on meds for years. Recent colonoscopy biopsy showed some inflammation in pouch and small intestine...here's the kicker...I feel great with NO symptoms...I only did the oscopy as I hadn't done one in over 10 years....I'm 35 now. I've read that Turmeric is one of the most... [ more ]
Mary Ann Cirigliano I suffered with pouchitis for over a year after my surgery. Constant bouts of incontinence and pressure pain only slightly helped by sitting. My dear Gastro Dr. sent me to his mentor about 600 miles away. He checked me out(scope) and said, You should be on a high protein, low fiber diet. No caffeine and no sugar. Sugar is very bad, causes inflammation. This has helped me tremendously! [ more ]
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J-Pouch ForumsGeneral Discussion
Alternative to Flagyl? i cant seem to get off of it
dgtracydgtracy
deweyj Flagyl sucks. but it works wonders for me. Xifaxan - aka Rifaximin is a relatively new alternative abx and doesn't carry with it the admonition v alcohol. Tinidazole aka super flagyl is also another possible route. I personally have never responded to probiotics but some people do. maybe I also haven't flooded my system with enough of them. [ more ]
ElmerFudd There are others who cycle through 3-4 different antibiotics. And for me, all antibiotics seem to have a positive effect on my pouch - not just Cipro or Flagyl. Doxycycline, Amoxicillin, Omnicef, etc. - I've been on then for one thing or another and my output decreases (since 50%-80% of our poop is bacteria), and I seem to then "reset" to decent function for several months. So while you may not be able to get away from antibiotics altogether, maybe you can use more than just the two? Steve [ more ]
Scott F Getting off antibiotics hasn't worked for me, though I've tried a few times. Your best shot would probably look something like the following while you're off antibiotics (and perhaps starting a day or three ahead of stropping antibiotics): 1) A maximum VSL #3 dose, at least during your "no antibiotics" trial. That's 3.6 *trillion* bacteria (4 packets of DS) per day. That's the dose I take. 2) Completely eliminate carbs, at least while you're testing whether you can make "no antibiotics"... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Painful Fissure and New GI Doc in Tampabay
D DAP
JLH i stayed on imodium as i was told it slowed down the transit time in my gut and minimize frequency. slowing down might have also thickened the stool, but when i went off it there wasn't much difference. try it both ways and see what works for you. keep at it as this is a situation that if you don't do something it will get worse, and then you are left with surgery, which is not a good option. janet [ more ]
DAP Thanks for the info. I'm going to try the humira. Did you or anyone else stay on Loperamide while having the fissure? I have been off of it since I originally got the fissure. Seems right to be off to make the stools easier to pass, but maybe I'm wrong??? [ more ]
JLH after about six weeks on humira i had a scope, at which time the skin around the fissure had 'granulated', which was a good indicator that it was healing. because the pouchitis had only responded a small amount the doc doubled the humira dosage, which i continued on for 4-6 weeks. humira wasn't working for the pouchitis, but the fissure had healed!! i ended the treatment, which would have been about 3 months, and the fissure never returned for the remaining one year plus. then i got a k... [ more ]
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J-Pouch ForumsGeneral Discussion
Chat room
D douglasj
cherylscudera Jamie Wehr, how else can I contact you? Cheryl Scudera? Are you feeling any better? I am on so many pain meds for so long feel like I am in withdrawal and crawling out of skin. But pain and anxiety too much without them. Sending hugs. [ more ]
cherylscudera Jamie Wehr, how else can I contact you? Cheryl Scudera? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Imodium or Pepto Bismol tabs?
LMacLMac
Jan Dollar If you take the caplets instead of the liquid or chewable Pepto, black tongue is not much of an issue. Jan [ more ]
lclassen Another side effect of the Pepto is that your tongue can turn black too. Happened to my husband and it scared us to pieces!! �� For my pouch, I've been on Metamucil since the day I got it... 18 years ago. Won't miss a day. I also will throw in an immodium if needed. Personally, I'd stay away from Pepto. [ more ]
LMac Thank you Jan! [ more ]
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J-Pouch ForumsGeneral Discussion
Another fistula question
J JHendrix
JHendrix I think I could manage to just live with it if it didn't have such an impact on intimacy. Today I hit brick walls with my Salofalk (Canasa) suppository idea. The surgeon's office is closed until next week. My GP is on holidays and the physician at a walk in clinic denied me. He thought it was too strong a medicine to prescribe when he is not in the loop with my whole history, etc. I am disappointed but I can appreciate his decision - I respect it. I use psyllium regularly and it certainly... [ more ]
CJB Add me to your club. I've had the fistula for close to 9 years now I think. It is a true recto-vaginal fistula. I have never had a seton for it. And I never attempted a repair for fear of ending up with a different problem. I don't have true stool leaking from my vagina either, unless I am holding it for a long period. I was told the yellowish discharge is "small bowel output". So what I figure to be the juices flowing in the small intestine, but not actual stool. It certainly doesn't smell... [ more ]
n/a My drainage is mostly yellow mucous as well, which, like yours, waxes and wanes in intensity. I do detect a bit of stool from time-to-time, mostly when I'm "holding it" and/or have gas, but this is fairly rare. And, I have cuffitis, which is treated with canasa and anusol suppositories. Have had my fistula (which actually exits just outside the vag. opening) for 5+ years now, with a seton most of those years. The seton is working fine and causes few problems. I do believe that the Canasa... [ more ]
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J-Pouch ForumsGeneral Discussion
Any JPouchers have luck slowing transit and thickeningn stool with pysllium husk powder?
VancouverGirlVancouverGirl
DJ H I can't handle Metamucil (gives me gas) but I have some success with the sugar free Citrucel . I can somewhat control the consistency of my stool with it. I mix it with water. [ more ]
dgloria5 Sprinkle a teasp. or so on your cereal or yogurt. [ more ]
Scott F Metamucil and Konsyl are available in single dose packets, very helpful for travel. [ more ]
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J-Pouch ForumsK-Pouch Korner
Contrast study of the K pouch with deformation of the valve
skn69skn69
Kara Fred I'm so sorry to hear of your trouble with the valve. Sending you warm wishes & thoughts; and know we are all probably extending a bit of TLC to our valve! I know you will keep us posted- Kara thank you for the images too-very interesting view! [ more ]
skn69 Thanks Janet, "You can never use too much lube"...Quote from Dr C, my k pouch surgeon. Beware of crunches etc for 1 yr post pouch creation...consider your pouch a newborn...do not expect it to walk, jump, run, climb etc during the 1st 12 months...baby it and it will last you a lifetime. Things are not healed before then even if you think that they are ( or in my case, ever)...so no 'over-enthusiasm' please! Thanks for the vibes.... be nice to your pouch Sharon [ more ]
JLH thanks again for more history on your problem; it gives me insight as to what can possibly go wrong. unfortunately my new knowledge is at your expense, which isn't fair. i hope there can be a reasonable solution. tough choices for you and i send healing white light to help you through this turmoil. i love my k pouch--hey, it's valentine's day--but am also dreadfully frightened of it. i probably overly lube and then mindfully breath until the catheter slips in so smoothly that i don't feel... [ more ]
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J-Pouch ForumsPouchitis
Osteoarthritis, NSAIDS, and pouchitis
DJ HDJ H
DJ H Thanks Jan. I'm trying Aleve now to see how that does. [ more ]
Jan Dollar If you already have a history of GI side effects with ibuprofen, you probably should inform your back doctor that you cannot take it. Ibuprofen is one of the worst NSAIDs for GI side effects, but they like to prescribe it because it works and it is cheap. You can ask about trying a different NSAID and see if you tolerate it better. I take Relafen (nabumetone) when I am in a severe flare, but limit it to two weeks. If that does not work, we move on to prednisone. I have also taken Mobic... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Question for the ladies
skn69skn69
Angie Wilson Sharon - you are a breath of fresh air - yes, fight the good fight - and yes - there is a spunk that comes from enduring this over a lifetime - it's a different type of spunk - but I know what you mean [ more ]
skn69 She didn't have a j pouch and total collectomy either? Didn't think so. Yup, it is easy (ier) to have spunk when you have all of your organs and no major disease or a lifetime of meds to keep you going...or maybe not...maybe our brand of spunk comes specifically from everything that we have suffered prior to, during and post disease/surgery/complications...this disease really brings you down a few notches... (sorry a bit less optimistic this morning...) ps...I finally went back to my routine... [ more ]
Angie Wilson yes Sharon - this is what it comes down to - fix one thing - it screws up another - on and on. I don't mind getting older either - but no one likes to feel bad all the time - or often. we are only human, after all. it's good to share it and get it out on this site - where you will find understanding and empathy - and ideas - as those around you don't want to hear it all the time (and why would they?) So thankful for the forum. I feel so much less alone and so supported on it. (funny little... [ more ]
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J-Pouch ForumsGeneral Discussion
Laparoscopic adhesiolysis
K Kushami
Kushami TE Marie, thank you for sharing your experience. My goodness, you have had a tough time. It sounds like you currently have a team you can trust with your surgeon at the Mayo Clinic and your GI. I have been fortunate in that if I do have adhesions, they haven't caused me any major pain or problems (apart from the occasional agonising jab when I sneeze or roll over oddly in bed). I'm in Australia and am having my operation through the public system, so I am not sure whether I can "shop... [ more ]
TE Marie I think you might need to find a different doctor. I had all open surgeries, hysterectomy related 20 years ago then 5 years ago had 3 surgeries in 8 months. They were my colonectomy, take down and incisional hernia. 5.5 months ago I had surgery to divert from using my j-pouch to a permanent ileostomy. I was hoping that I wouldn't need the j-pouch removed. I am now getting it removed next month My current surgeon is at the Mayo Clinic and she went in and laproscopically spent 3 hours lysing,... [ more ]
Kushami Thanks for your input, Scott. I will see the surgeon on March 10 and ask him all about it. Somehow I feel that I can face having my pouch diverted to an ileostomy, but can't cope with the idea of having my abdomen opened up again. Given that I have had an ileostomy before (so won't need as long to get used to it as a newbie) I imagine that I could get home much sooner if the adhesiolysis could be done laparoscopically. [ more ]
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J-Pouch ForumsPouchitis
Taking Canasa for Cuffitis - How long is long enough?
KQ Kevin Q
Jan Dollar Kevin, that is not too bad. I thought that you were saying that was the cost all the time (as in- not covered). Our HSA plan is also a $2600 deductible, then there is a copay after that. My biologic is $3000+, so that is why my deductible is reached in the first month of the year. If we stay on an HSA after our COBRA runs out this year, the deductible will go up to $9000. We had a few years of the zero copay after deductible, and it was pretty awesome. When I crunched the numbers in the... [ more ]
Kevin Q I currently have a HSA plan with a $2,600 deductible (the highest of the plans offered). The benefit is that everything is 100% covered after I pay this off, I just have to budget for this at the beginning of the year. I may try another plan with a lower deductible to see if it saves me money, it's just hard to tell because we unfortunately never know how many office visits, medications, and surgical procedures we may need. [ more ]
TE Marie The cost was almost $600 a month when I took it. I had to pay for it out of pocket until my deductible was reached. I got the message "your insurance saved you $xxx dollars, which was the full retail amount similar to what you are paying. I quit using it last fall but still what you are paying sounds too steep! I never got off of it. But it did keep my symptoms down. If you can follow to every other day and to twice a week in remission that's what I was instructed to do. Didn't work, I was... [ more ]
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J-Pouch ForumsGeneral Discussion
Small servings
FM Former Member
Jan Dollar I don't think so, unless you are slowing the gut too much. I was talking about pouch function, and what can be done during those early months/years during adaptation. Certainly, if you slow the gut or your transit time is so slow that you are having less than 3-4 bowel movements per day, you may be dealing with fecal stasis. But, having stool moving through should not cause pouchitis. Jan [ more ]
Pouchomarx but wouldn't small serving cause more chances of food sitting in the pouch and cause pouchitis? I would think a larger meal and then poop it out at once to decrease chance of food sitting in the pouch longer? [ more ]
Jan Dollar Just like you said, it is for improvement of BMs. But, it is not just small servings, but frequent small servings, as you want to maintain your nutrition. In addition to helping with function early on, it also helps with nutrient absorption. In the first year or so while your gut is adapting to life without a colon, it is easier to overload your system with meals that are too large. This can increase diarrhea. The size of a small serving is subjective. You'll find this to be a common... [ more ]
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J-Pouch ForumsPouchitis
Alcohol Causing Pouchitis
KQ Kevin Q
Muddygirl I have always liked my beer and I have a few beers more than one evening during a week. I have not noticed that it causes me any issues other than now I can't handle drinking but a few. Not sure if it hits me more now that I am 40 pounds less. I am 9 months post take down and am doing pretty well. I have not experienced any serious issues (knock on wood..lol). In a 24 hour period I am going to the bathroom 3-6 times depending on what I eat or how much I eat. I am sure this will get a little... [ more ]
DJ H I have mixed results with alcohol. Lately I've been following SIBO (essentially SCD & low FODMAP) and per those charts, beer is in the avoid list while things like Vodka are on the Ok occasionally column. Might be worth a try switching to a SIBO allowed alcohol, in moderation. That said, I have never felt like beer causes significant pouchitis worsening for me. I'm sure it makes inflammation worse in general but it does not send me over the edge like lots of sugar or bread does. [ more ]
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J-Pouch ForumsOstomy & Skin
Hair
JeffmichJeffmich
Kushami P.S. I don't think it would be advisable to have laser treatment once you have your stoma. The skin in that area is usually sensitised by the adhesives etc., and adding a sunburn-like trauma might be too much stress. [ more ]
Kushami Hello Jeff, I have had laser hair removal (underarms - for cosmetic reasons). If you have dark hair on pale skin, it is effective. It is unfortunately painful as well, but on a small area it is over in five minutes. You can get a numbing cream to apply beforehand that works well. Afterwards, you need to be careful with the skin - treat it gently and no hot showers - as if you had sunburn. I found that waxing caused ingrown hairs. (It didn't matter how the hair was pulled out - waxing,... [ more ]
Mysticobra I don't have many so I just shave or trim them with a Remington trimmer. Laser? You'd have to have the appliance off for that it's seems. Waxing...never done it but seems like it would do more harm..... remove the hair and the follicle would be open ?..... It Would be open and you would have to put the wafer over it. I don't know. I just shave it. But I am lucky to have a half dozen hairs around it. Richard [ more ]
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J-Pouch ForumsPouchitis
Do you change your diet when you have pouchitis?
C clouwho2
drone3 I manage my pouchitis through diet - no sugar, alcohol, caffeine, processed foods, grains, fruit. Basically, i live on protein; eggs, fish, chicken, plain homemade yoghurt, avocados, carrots, pumpkin, tehini. Only drink water, chamomile tea & raspberry leaf tea. [ more ]
Pouchomarx when out and about on the road, what do you eat? its hard to find non processed food on the go. [ more ]
Ruzi Hi Rebecca just wanted to know did you suffer rectem pain as well? I suffer from pouchitis & have been on & off antibiotics but still currently on them. So you say diet has a big change for pouchitis? [ more ]
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J-Pouch ForumsOstomy & Skin
Question on wafer.. flange.
MysticobraMysticobra
Caty Again, less is more. No need to do anything special when in the shower. Wear your appliance in the shower or leave it off on change day and take a great shower without it. There's special adhesive properties in the tape around the flange and it doesn't mind water at all. Just let it dry naturally when out of the shower OR use a hair dryer on low heat and a tissue to wipe off excess water. Don't let the dryer get too close to the bag; it will leave melt marks on it. Keep the dryer about six... [ more ]
TE Marie I use Press and Seal wrap and waterproof tape when I do cover it up. That is usually when taking a bath to shave my legs, which I assume you don't need to do. My baths are shallow so the water doesn't come up and soak it. Then I use a blow dryer on air with no heat to dry it. But usually I don't need to. I've been timing my showers to coincide with my changes and it feels great! I watched u-tubes. The Press and Seal with waterproof tape is from one on there. The tape is very expensive and I... [ more ]
Mysticobra I changed Sunday. Fifth day. I do notice it comes off alot easier after a longer period of wear. At the beginning of last week I had to do a change the same day cause it just did not feel right and I didn't want to go to work regretting it. But boy after just a few hours on it was tough to get off. It was stuck like superglue. I used a barrier wipe to help it off. Took awhile as compared to yesterday... It just peeled right off. I do not want to damage the skin around it and keep your time... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Imodium causing nausea
alecz222alecz222
Angie Wilson I agree - I can't take Imodium anymore - I don't do any kind of fiber..but this all happened over time with my pouch. For first several years, took fiber w/ small amount of water...then, that became something that plugged me up too much. Now, I opt for more output and lots of hydration/propel/etc. because the stopping up is not fun. Point is- your small intestines do adapt (or do for many) and change over the years - as Jan said. What works at one stage is maybe not what works at another -... [ more ]
Jan Dollar I would suspect that the Imodium is slowing your gut too much at this point. Hence the nausea. The lesson? Things change. It is not that you are suddenly reacting to the Imodium, but that your need has diminished because your gut has adapted over time to not having a colon. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
leaking at night
R Rebe0505
Jan Dollar Oh that's good! I agree that traveling across half the continent is too much for regular maintenance, and you need someone local for urgent situations. You can always follow up with Dr. Shen as needed or your new doc can consult with him. Good luck holding things together until April! Jan [ more ]
Rebe0505 jan my appt is indeed for a scope because i have not done it in awhile and because i am trying to set up relationship with this dr. melmed in la ..he has seen me once but i did not do a scope with him..dr. shen has been my doctor but it was tough going from cal. to cleveland once a year so i got sloppy with going yearly.. dr. shen recommended him when i asked for a closer dr. to santa barbara.figured i was always uneasy not hang a dr. near me in case of emergency etc..so although i was due... [ more ]
Jan Dollar Pouch scope timing should depend on your original diagnosis, whether you still have a cuff, and whether or not you have ongoing issues. For me, I hit the jackpot with pancolitis, a retained rectal cuff, and chronic pouchitis. So, sure, I am hopeful that I'll continue with negative biopsies. But, I also know that long term inflammation can lead to dysplasia and/or neoplasia, so I am always preoccupied until my results are in. Same thing with my mammograms and PAP tests. Bottom line, yeah, you... [ more ]
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J-Pouch ForumsHelp! Need advice now!
stoma itching & burning
GinLynGinLyn
Ashley22 Burning and itching for me usually meant I wasn't getting a good seal and stool was leaking under the wafer. One thing that made a huge difference for me was using the convex wafers. I also used one of those sticky rings (can't remember the actually name of them) to help it stick to my skin. Barrier cream and stoma powder help protect the skin from getting raw just don't use to much or the wafer won't stick. As far as the itching I would sometimes put ice packs over it and it actually helped... [ more ]
Mysticobra I am doing a lot better than I ever expected. I can change in 15 minutes. Not afraid to... And at the beginning I couldn't. Never ever thought I would get here so soon. I am in a good place. And I do think over more time it will get even better! Richard. [ more ]
Lambiepie GinLyn, thank goodness for convex wafers! They solved my similar early on problem, too. I'm so glad for you.... Richard, it does get better. I'm a year out and definitely much better than during the first few months. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abscesses and fistulas after j-pouch
Ashley22Ashley22
Jan Dollar First things first. Get the CT so you can find out if there are other abscess pockets and where they are. It may or may not be Crohn's. Perianal disease is common with Crohn's, but they also can be a complication of the j-pouch surgery. If the the fistula arises from the ileoanal anastomosis (suture line), then you really cannot jump to the conclusion of Crohn's (at least not yet). It is worth attempting to figure out since Crohn's complicates things. But, in the long run, your treatment... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
More complications with IUD?
J J9Pouch
Jan Dollar If you are married, how about hubby having a vasectomy if you are 1000% certain you are done with your childbearing years? I was 40 when I had my j-pouch surgery and did have a tubal at the same time. I was not interested in midlife babies. It was a good decision for me, as otherwise it would have been another decade of birth control... Jan [ more ]
J9Pouch Hi Sharon, Thanks for your input! Those microwaveable bags are *awesome!!* I definitely don't want to ever get pregnant, and kind of regret not getting tubal ligation at the time of my colectomy. I didn't think to ask about it until after the fact, and while it's possible, it's now a riskier procedure than it usually would be thanks to the j-pouch. Hence, the IUD! I definitely talked to my GI surgeon before getting it and he said there was no risk it would pose to the j-pouch. He also shares... [ more ]
skn69 J9, I am not sure...I was warned that as far as contraceptives were concerned that IUDs were out of the question. That the pill was helpful and that periods were going to get worse. That was 35yrs ago. I was sort of hoping that things had changed and gotten better for you guys. Does your Obs/gyn know about your pouch? What I do know is that periods felt like I had a concrete block in my uterus, that it felt like it wanted to drop out onto the floor, that my lower back felt like someone had... [ more ]
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J-Pouch ForumsGeneral Discussion
Stomach Growling
H Hayley14
CeeeeCeeee Years ago I was told those rumbling sounds are called "burbulance". I use the term even if it may be fabricated. [ more ]
Kushami Hi Hayley, Mine would grumble loudly after eating - I no longer get "hungry rumbling". Occasionally when I worked in an office people would be a bit surprised that it was making noises after we had all had lunch! And I seem to recall that someone once wondered whether it was distant thunder ... I usually laugh it off with "Oh, that's just my crazy stomach". Cheers, Sarah [ more ]
Cdub Hi Hayley I get loud grumblings a lot, and have just got used to it over time. I think in my case the cause is different - I'm not able to pass wind, so the rumbling is from wind in my small bowel, but the sound is the same! Like you say, it's not distressing (for me anyway), and I tend to make a joke about it. People tend to assume it's my stomach rumbling. I'd rather than that any of the symptoms of UC again! [ more ]
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J-Pouch ForumsGeneral Discussion
so much pain in hip area, left of my tail bone.
dgtracydgtracy
TerriG Thanks Scott. I know I'm not suppose to take Ibuprofen, has already caused bleeding & now very anemic so I try to limit but I don't know what else to do. I live in Reno NV & its hard to find a smart Dr. I think my pm doc thinks I'm out for pain meds but I only take when needed. I hate them. [ more ]
Scott F A rheumatologist won't help much if it's typical sciatica. Give the PT a chance, and if that doesn't help, consider a different (smarter?) pain management doc. A more optimistic approach would be to see a physiatrist, who might guide the PT in a more sophisticated way. Please be careful with the ibuprofen, which can lead to a nasty case of pouchitis. [ more ]
TerriG These posting are old but I'm having similar things happening. Thought from 2 jolts in a car accident. Started with pain in my right butt cheek & would travel down my leg. Now it it also lower back & the left side pain & down the back of my leg to my knee. Went to chiropractor made it worse. Went to pain mgmt have had 4 injections. Didn't help. Now on pain meds & lots of ibuprofen. When I sit I feel like it's pushing my tell bone up. They say siatic nerve. Start physical... [ more ]
See all 12 replies...
J-Pouch ForumsOstomy & Skin
1 month post pouch removal
IJ ISU Jed
Mysticobra For all who are on the ileo side. Including me. Welcome. Life is good again. Pain and worry free. And I had both... Now. I have neither I still don't like change day. But that time will come where it's nothing but a chore. Today was change day. Sunday and Thursday... Providing no problems arise. Half hour of time... Including a good shower. Richard. [ more ]
TE Marie I appreciate having this thread to read. Big plus for this support group it the ability to do so. My ileostomy is ok but my surgeon was right. I should have had my j-pouch removed along with my ileostomy back in 8/31/15. I'm scheduled for removal of my j-pouch and anus on 3/24. They scheduled me for the first day she has open as she doesn't do other surgeries the day she does these. At least I am use to the ileostomy and she's already been in there and lysed my adhesions. My ileo surgery... [ more ]
LORI726 As someone who is going to need future J pouch removal, thanks for all the info! Is there any place they can't stick a tube?!? [ more ]
See all 34 replies...
J-Pouch ForumsGeneral Discussion
leaking
R Rebe0505
Rebe0505 scott did not find your reply under help? but just wondering if diet could be culprit..have changed my diet from dcd which no longer was doing much..still need my antibiotics again so i just went gluten free eat rice now (so good!!) and have added other things i restricted myself from which probably had some more sugar...eating anything processed like form of ice cream will add ingredient you may not want..wondering if diet change cause for my leakage? truthfully feel so much better since... [ more ]
Rebe0505 thank you will check out... [ more ]
Scott F You asked a much more complete version of this on the "Help!" Forum, so I've answered there. [ more ]
See all 3 replies...
J-Pouch ForumsPouchitis
Cortisone for pouchitis
L Lars05
Jan Dollar Good luck! I usually have better results with a combination, but my GI is not keen on me doing that long term. He worries about bacterial resistance. Jan [ more ]
Lars05 Trying it with 2g Rifaxim + 1g Cipro daily now. Starting tomorrow [ more ]
Lars05 I've read that article. I was on Flagly+Cipro (helped for the first time), than switched to Rifaxim. I also tried levoquin one. Nothing really helped. I got some Pepto Bismol imported, which doesnt seem to help either. No my doctor has put me on Decortin and some budenoside in addition. I do not think, this is really helping. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
STOOLS ACIDY ANUS ON FIRE
bederyparisbederyparis
Angie Wilson I am not sure on this one - I have times when this goes on (in fact - this happened for about 2 days earlier in the week) - but then if I watch what I eat, lots of clear broths, etc. etc. - it goes away and I am ok. Have had this last up to about a week max and other than ointments, I just stay home and ride it out. Over the years with the pouch - this has probably happened to me on less that 2 percent of days? 1 percent? Not sure. When it happens, it hurts terribly and yes - feels like... [ more ]
lelak Nitroglycerin is a vasodilator which relaxes the sphincter muscle and allows the fissure to close and thus to heal, is my understanding. Diltiazem does the same, and without the side effect of headaches that nitro has. [ more ]
JHendrix I think Jan's idea about a fissure is a good one. I found a fissure to be very painful and different from butt burn. My doctor prescribed a nitroglycerin ointment which I found odd but it helped. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
How to pass gas quietly?
alecz222alecz222
Angie Wilson Wish there was a solution to this one - if there is one, I have never found it in 30 years with pouch. Loud, explosive gas is just part of it for me. (true that when had stoma - this was not a problem). I try to plan around this type of thing by not eating much when I'm out with people - men don't seem to care - many women do. I also have to clean my toilet every day due to the lovely spray of shit all over it. Wish I had an answer - I have not found one to this one and if someone has, I'd... [ more ]
Mysticobra Re: How to pass gas quietly? [ more ]
Scott F A large fraction of us are unable to safely pass gas away from a toilet without risking a mess. I'm jealous of your skill. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Heavy bleeding
BB Betty Boo
Betty Boo Really...so maybe psyllium husk would be good, I used to use this regularly but stopped when I was getting blockages. Thanks so much for all your advice I really appreciate it. [ more ]
Jan Dollar You may want to use some soluble fiber to thicken, as loose stool can lead to straining and irritation, just as constipation does. The fiber also absorbs the bile acids, so less caustic effect. Hemorrhoids can be extremely painful, as there are a great deal of sensory nerves in the anal canal. Jan [ more ]
Betty Boo I never imagined hemorrhoids could be this painful!!! My stool consistency is pretty loose to say the least as I'm not taking anything to thicken it or slow it down at the moment. The trouble is straining as I have a full feeling in the anus all the time and it feels irritated and painful as well. Weight is not an issue as I am quiet slim now. So if it is thrombosed hemorrhoids are they easily sorted out??? I am picking up a prescription for another ointment tomorrow as the canesten hasn't... [ more ]
See all 27 replies...
J-Pouch ForumsHelp! Need advice now!
Extreme Rhinitis and skin allergies
Christopher100Christopher100
deweyj aw bummer. sorry to hear that Jan. that is an interesting observation that it is almost universal that chronic pouchitis is cropping up in long term pouches. I started experiencing chronic pouchitis around 19 years, curiously I now find myself at almost 30 years and still kicking. I will have to remember to ask my doc the same question. when I go for my scope in a few weeks. [ more ]
Jan Dollar I just had my pouch scope today and it turns out I have rather severe cuffitis and pouchitis, despite taking all my IBD meds AND rotaing three different antibiotics for the past year. I am amazed my gut function is as good as it is. My GI is going to discuss my meds with my rheumatologist to see what we can change up to improve things. He was saying it is almost universal that chronic pouchitis is cropping up in long term pouches. Mine was 20 years old last August. Jan [ more ]
Christopher100 ❤️
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Pouchitis? or crohns flare?
M Marybeth6207
Christopher100 I agree, unless it was UC you had before the Jpouch it may be difficult to know if its a flare up of Crohns or Pouchitis. When my Colon was removed it was goodbye to the UC too so my Pouchitis was by default Pouchitis. But i have a friend that described to me his Crohns flare ups, omg, its a cruel thing to suffer for sure. Dioralyte is the go-to rehydration med for us in the UK and even with no flare up present Jpouch people will also benefit from using these drinks a few times a week for... [ more ]
Christopher100 Hi Marybeth, At one stage i was suffering with Pouchitis every 3-4 months. I do remember the sympoms were very similar to the ones you describe. Blood and often mucus in my 'winnie-the-poohs' was deffo the one certainty every single time. First ever Pouchitis i remember like it was yesterday despite being many yrs ago, the pain was immense! My gosh, my boyfriend actualy dialed 999 for an ambulance because i was in so much pain. The medications were 1 months antibiotics, Metronizadole and... [ more ]
LauraLee Hi Marybeth, I'm 45 years old. had UC since I was 21 years old and after an aggressive flare up that last two years, to ended with a Jpouch (3 stages) since Feb 2014. The first 6 months with my Jpouch my life was ideal, with no issues, but after that "grace period" I'm being dealing with constant pouchitis, cuffitis and I start believing I have Crohn's. I was taking Cypro and seems to be working great for about 6 months but lately not much. My GI doctor wants me to try Cypro for 10 days then... [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
Thank you!
Kara FredKara Fred
JLH kara you are doing amazingly well for being only 7 weeks out!! both physically and mentally. at that stage i was still having some doubts as to whether it had been the right surgery. it was right and i'm happy camper now. interesting that diet's office says ok for miralax and the ostomy nurses were adamant that it was wrong. what dosage? you'll learn with the food. takes practice, which i am still working on also. i've given up juice and have not noticed a difference. then again i drink... [ more ]
Kara Fred I was private messaging with Janet and she made a good suggestion to post to the entire K-Pouch corner group. Things are going well with my K-pouch; Water’s Catheter is out, incisions are healing, stoma is getting smaller and intubating is getting easier. I completely understand all the posts by others in regards to incidents with their tubes. I can see how easy it becomes to make / have a mess and how easy it would be to forget supplies in the restroom. I do have a lot of mucous drainage... [ more ]
skn69 Ok... I use a small Evian water bottle with the sippy-tip and snap top lid. That holds about 3 syringe's worth of water in it so I can squirt enough into the syringe to irrigate 2xs if needed...then I just use the syringe to push out as much gunk as possible into the bowel and rince with the remaining water. Yes, grab a few 60cc syringes with catheter tips from the hospital, a few extra tubes (strait and curved if you can) and an extra leg-bag or two plus a couple of blue pads. I put the... [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
A Jeffrey update, things never get easier!
JeffsmomJeffsmom
deweyj excellent news Dianne. say as an aside, noting his gallbladder removal. I think ive discovered something at least for myself, perhaps others already know this but as ive struggled a bit with ischemic pouchitis in the form of nightly incontinence, I have noticed that the former admonition against eating late might not be relevant. how do I mean, well immediately after takedown the surgeon's advice is to not eat past x hour, leaving plenty of hours for your food to find its way to the jpouch... [ more ]
Jeffsmom Jeff is doing much better! And he is coming home tomorrow! Birs been a long 2 weeks! [ more ]
Jeffsmom Grace, thank you. [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Remicade - life's been good. Now - ugh. Deteriorating. Fast.
D _Dan_
Jan Dollar Well gee, that really sucks, Dan! My advice? You probably won't like it, but you probably are best off moving on to the next drug recommended. While I have not been bothered with side effects, I have dealt with dwindling effectiveness. I am on my fourth biologic. However, I never have to jump through approval hoops to change meds. I just have a discussion with my rheumy and the new drug is approved. The only "hoop" I have is to fail the current one. They all cost about the same, so it... [ more ]
_Dan_ Crohn's DX 27 years ago... [ more ]
deweyj Interesting that Humira yielded unacceptable side effects but Remicade worked well for a while. Entyvio is thought to be largely gut released, so in theory should yield potentially less side effects. that said, I have seen reported the usual occasional side effects from patients who are colon carriers. I will observe with interest your success with Entyvio. Hopefully it works well for you. Curious did they ever biopsy Crohns tissue? where did they find it? Technically I now also carry a... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
fiber - blood sugar?
I iHateColitis
Jan Dollar Thank you Scott. Well stated. So here's the point: You can have a transit time of an hour (time from eating to bowel movement), yet have adequate digestion of nutrients. Digestion and absorption of nutrients depends largely upon the health and length of your small intestine, proper pH levels, and presence of enzymes and hormones. Slower digestion helps mediate spikes in blood sugar (important for diabetics). Slower transit time might allow for better digestion if your ability to digest is... [ more ]
Scott F Transit time is the time it takes from putting food into your mouth until its residue gets to the finish line. Digestion is the mostly chemical processes of turning food into molecules that can be absorbed through the gut into the blood. [ more ]
iHateColitis What is the distinction between transit time and digestion? [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Hernia surgery inquiry...
H Halo52208
lhh65 Hi: When I had incisional hernia repair in 2012, my surgeon who has done by J-pouch and reversal did a plastics repair when closing...very much improving the huge scar that had been there. I was not that upset with it in the first place, but he seemed quite happy with the results. So he was a GI surgeon, not a 'plastic surgeon'. [ more ]
Halo52208 Thanks [ more ]
Jan Dollar Just to add to Scott's note: while the insurance company does not care who performs a hernia repair, they are unlikely to pay the additional fee for a specialty surgeon. They will pay the reasonable/customary fee for a general surgeon, unless there is a specific need. Plastics coverage is generally reserved for facial repairs and hand/foot injuries, as they are considered medically necessary. Abdominal repairs with plastic surgery are considered cosmetic and are not covered. Jan [ more ]
See all 5 replies...
J-Pouch ForumsPouchitis
Treating pouchitis is treating a symptom, not the problem
H Halo52208
Halo52208 My new GI says 30-40% of jpouchers get pouchitis. He said it's because our small intestines are not meant to hold stool. I asked why some people have no problems and others do? He didn't know why. I did get put on Cefindir to kill the bacteria and Enteragam. So we will see how it goes. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Urination after surgery
W Willie
Jan Dollar Sounds like you are not emptying the bladder compketely, so are retaining urine. It could be from trauma/swelling around those nerves. If so, it should improve over the next few weeks. Never the less, you should report this to your doctor, as it could be an infection. Sometimes you can get urethritis from the urinary catheter used post op. The inflammation can cause bladder retention. Jan [ more ]
Willie Thanks for the replies. There is no foul smell or odd color, everything is normal there. Just the urge to always pee. I will give it a little longer to see if it is just some swelling from surgery playing with my bladder. [ more ]
Former Member Before you begin to consume copious amounts fluids, cranberry juice or otherwise, ensure, that from your normal intake of fluids, whether water, tea, coffee or whatever, that you're able to pass water with good flow, without straining and no dribbles. If flow is good/normal and no uncontrollable stopping n starting, then you're good to go. After my takedown surgery, whilst still in Hospital, I developed an enlarged prostate, which with the catheter removed, I was unable to pass water, which... [ more ]
See all 5 replies...

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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