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J-Pouch ForumsGeneral Discussion
immodium, lomotil
allswellallswell
TE Marie I use Loperamide which is prescription Imodium. I think it works better because it is in capsule form and makes it into my system faster. I've never tries lomotil so don't know the difference. I don't need to use it when I'm taking antibiotics but do use 2-4 per day when I'm not taking them. All of us are different and it's been trial and error and what am I eating etc. I wish there was a manual we could follow! [ more ]
betsaronie I found that lomotil actually gave me diarrhea, it is a side effect, oddly. Wal-mart brand immodium works best for me and is cheaper than name brand. it's the only thing I even go to that store for it works so well. Everyone is different, I agree with Scott, try them both and see which you prefer. [ more ]
Scott F They work similarly - both act on the opioid receptor in the gut. Imodium is said to increase anal sphincter tone, though it doesn't do that for me, I think. Imodium is OTC while Lomotil is a controlled substance (at a modest level of control). Lomotil is a little more like the other opioids; for example, it reduces withdrawal symptoms in opioid addicts. Lomotil has a bit of atropine added, which is usually fine at the prescribed doses but (by design) very unpleasant at higher doses. Neither... [ more ]
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J-Pouch ForumsGeneral Discussion
Mobile ascending colon
D DaveInNorCal
Jan Dollar Good news that things are stable. Even if residents performed your Nissen, it does not mean it was botched. "Stuff happens" even in the best of circumstances. Jan [ more ]
DaveInNorCal By the way, I continue to be asymptomatic. I really appreciate all the help i have received from this forum and especially from you, Jan. [ more ]
DaveInNorCal I strongly suspect that the surgeon of record did not perform the Nissen. I was in the hospital for four days and never laid eyes on him. In my opinion, the residents botched it. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Medicine while breastfeeding
lholdemlholdem
JJA In my early years with my pouch, if Flagyl didn't work on my pouchitis, cortenemas did the trick every time! But sounds like you have done good research-hope you can stay healthy enough to finish breastfeeding without issue! [ more ]
Clicky I breastfed my baby for 20 months - the entire time on Augmentin from day one until a month ago when I had to stop as I had my jpouch removed. Doctors said I had to take drugs and also that it was unlikely to cause any problems - he's been fine - fabulous actually! I also took it and keflex through the entire pregnancy. Good luck with your decision. [ more ]
lholdem Hey again. Thanks everyone for your helpful input. Here are my findings/conclusions: [LIST] Entocort is not available in an enema, and per my doctor, other steroid enemas are not very effective at treating pouchitis. I didn't *notice* any negative side effects of the entocort when I was taking it, except that I had to delay baby's shots. She just caught up on her newborn/2 month shots so I don't want to have to delay her 6 and 9 month shots if possible. Pediatrician said he was ok with two... [ more ]
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J-Pouch ForumsGeneral Discussion
parasites and ova?
Nice NurseNice Nurse
Scott F Parasites don't commonly cause blockages, but they can sure cause a variety of problems. We are just as prone to such intestinal infections as anyone else, but an easy mistake to make with J-pouchers is to forget to check for infections. I'm glad he's thinking outside the pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Back Pain after Colectomy
J Jpoucher86
ElmerFudd Yep - have been dealing with back pain now for years, but it didn't seem to start until several years post-surgery. There can be multiple reasons for these issues. The most commonly investigated issues for IBD patients focuses on inflammatory arthritis issues. Seems we are prone to inflammation anywhere in our bodies. Ankylosing Spondylitis and Enteropathic Arthritis are possibilities. Some of us have received diagnoses of Fibromyalgia - pain the docs can't really explain any other way. Then... [ more ]
TE Marie My j-pouch reaches up around my tailbone area where I also have arthritis. Plus they moved things all around when performing our surgeries and who knows which nerves could have been misplaced? My lower back pain gets worse when my j-pouch is inflamed. I've worn out several heating pads since getting my j-pouch almost 4 years ago.....Drugs don't help, at least any I've taken....... It's better than right after the surgeries but I still have "flares" of pain. [ more ]
KOB FWIW, My surgery in July lasted over 5 hours. I have a history of back pain (degenerative something or other in the lower back). It was fine before the surgery, but after 5 hours of contortions, this aggravated it markedly not helped by the crappy hospital beds. I was taking a fair bit of endone (until I started seeing signs of dependency - so gave that away). It is only now, after nearly three months, that my back is starting to settle down. Standing was OK, lying down was a PITA, well a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rectal Spasm , jpouch not connected yet
H Hawker
MaryMomof3 Hi! No- it is not connected yet. They just guessed it was an infection given the severity of my pain, the internal rectal burning, & the frequency of my spasms. Sure enough- after 48 hours on cipro that all went away ! [ more ]
Hawker also how did they find out it was infection? did you get some sort of xray done? [ more ]
Hawker marrymonof3 is your jpouch connected?? [ more ]
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J-Pouch ForumsGeneral Discussion
trying to figure out what my new system is doing
allswellallswell
Pluot I think you are confused -- when stool passes the sphincter, it is exiting the body. It does not pass the sphincter in order to enter your j-pouch. The j-pouch is made of small intestine, which pulses to squeeze digested food forward and eventually out (you might remember this from watching your stoma when you had it). The j-pouch is shaped like a pouch but it's still made of the same intestine that likes to push things forward. These are the spasms you're feeling, most likely. Over time as... [ more ]
suebear This all sounds like normal recovery to me. I was never told to hold it; I always emptied my pouch when it sent the signal. You might get some relief of you spasms by taking levsin or levbid. You can talk to your surgeon about it. You are very very early in recovery, 8 weeks is not much time. It takes time and lots of patience for your new system to learn its new job and become predictable. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Today's Washington Post
B Bodoni
Jan Dollar Interesting read and affirmation that SIBO is a real possibility for those of us with chronic or recurring pouchitis symptoms without evidence of pouchitis. Antibiotics are a double edged sword and not without their problems. High fructose corn syrup gets a lot of bad press, and I guess SIBO is another reason to avoid it. Problem is that it is a common ingredient in many prepared foods and beverages. Jan [ more ]
CTBarrister Here is the link: http://www.washingtonpost.com/...e1f974f8a_story.html [ more ]
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J-Pouch ForumsHelp! Need advice now!
AVN?!
S sally85
LisaT Hi Sally, I was diagnosed with AVN in sometime in early 2000. It was caused by the enormous amount of steroids used to treat UC. I had both hips replaced, 2008 and 2014. The operation was a breeze. In Monday 7:00 am out Wed. morning. I walked without assistance. Got home and walked upstairs to take a shower. I know everyone is different, but hopefully, if you have replacement, it will be easy. Let me know if you want more info. Lisa [ more ]
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J-Pouch ForumsGeneral Discussion
Transit Time?
ATXGuyATXGuy
Shainy Same for me. Sometimes transit time is a few hours but generally 4. If I have a coffee the bag starts filling in minutes. Activity speeds things up so I find things slow down when I am sleeping and then as soon as I get up and walk around the flow starts again. I can see dinner from the night before up to 12 hrs later if I've had a long sleep [ more ]
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J-Pouch ForumsGeneral Discussion
Possible pouch doesn't fill?
allswellallswell
allswell Thanks! what is the difference between immodium and lomotil? seems they are two different things. [ more ]
Amstobar I had/have similar issues, but not quite as extreme. If you think about transit time, it makes sense though. Your dinner from the night before sits in your intestines, and the transit time may be slowed, as you are asleep. Once you wake up, you empty most of what you have, then eat breakfast. You presumably then eat lunch, as well, before your second bathroom visit, then all hell breaks loose. The second bathroom visit is probably your breakfast, and the rest of the day is probably a... [ more ]
TE Marie I go once or twice in the morning and then my pouch is empty. I then have a long stretch of time where I don't go at all. Do you think that could be the same for you? [ more ]
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J-Pouch ForumsHelp! Need advice now!
small red bump in between stoma & skin 1/8th in size
dgtracydgtracy
dgtracy Thanks hendrix, after one bag change it appeared "deflated" then after another bag change 6 days later it was almost completely gone...i think i can chalk it up to a wafer from before that was too tight and may have scratched the stoma. [ more ]
JHendrix I had this - or at least sounds the same. Sorry, I can't remember what the heck it was called but it was removed with silver nitrate sticks by the EM nurse. I had a few of them and they stung sometimes and other times not. Hopefully that's all it is...these were easily removed. [ more ]
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J-Pouch ForumsGeneral Discussion
question re mesalamine suppositories
J JHendrix
Scott F I understand that the Canasa isn't a random choice. It's just that if you're going to depend on a prescription med, you really need a doc willing to prescribe it for you. What if you need some more? That would be a bit late to start looking for a GI. [ more ]
TE Marie I was going to say it sounded like it could be cuffitis to me so if I were you I'd go ahead and use the medication because you were treated for it before. The bigger problem is getting around the receptionist at your surgeon's office. She clearly doesn't know what's going on. I think there are many surgeons that do continue to treat j-pouchers because we are a rare bird. Is he the one that treated you before? Can you call and leave a message for his nurse? Maybe you should get established... [ more ]
JHendrix I would agree that you wouldn't use a medication just because it happens to be in the medicine cabinet.For example, I have a whack of left over predisone but wouldn't consider taking it without physician direction. My thinking is to try to treat what may be cuffitis. I previously had the same symptoms and the bleeding and the increased frequency, urgency did go away after using the suppositories (they are non brand canassa). I have to say I'm a bit surprised with the surgeon's office. He had... [ more ]
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J-Pouch ForumsGeneral Discussion
Medicines/Can we ever get off them!!!
G grandmaof1
TE Marie I've been taking canasa daily for cuffitis for several years and have finally realized with the help of my doctor that I need to take antibiotics most of the time as well. I'm rotating between 2 now. CT Barrister's explained why some of us end up needing to do this well. I was afraid to become antibiotic dependent. My GI says that the doses we take for pouchitis are low compared to major infection dosing. He has never seen someone taking them as such get ill with something else and have... [ more ]
grandmaof1 I understand now. I was diagnosed with UC but after we got the results back from colonoscopy is when I found out I had dysplasia (pre cancer cells) through out my whole colon. We waited four months to get my colon to calm down and retest me and it had got worse. So that is why my colon is out. I do have some great days and I even went back to work after being a stay at home mom for 20 years. It is hard but at least I am getting out of the house. It helps but I hate mornings. Sometimes I... [ more ]
CTBarrister I did not need medicines for about 2 years after surgery and since 1995 I have been on antibiotics chronically to treat pouchitis/bacterial overgrowth in the J Pouch. A colectomy cures you of UC, but it does not cure you of the underlying autoimmune disease which caused the UC. Autoimmune disease is systemic. How it manifests in any individual will determine whether medication is necessary. There is simply no way to know how your body will react over time to the J Pouch. Hence Rachel's... [ more ]
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J-Pouch ForumsGeneral Discussion
2 years post take down!
G gleam
gleam I forgot to mention, I was having occular headaches and my Eye Doctor said it was normal. (Although, I had never experienced them.) I had my blood work done with my GP for fatigue reasons and discovered my Vitamin D3 was low and B12. After taking D3 every day, no occular migraines! [ more ]
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J-Pouch ForumsHelp! Need advice now!
I'm a mess!
clz81clz81
clz81 Rachel, good to know IV Tylenol exists! Not in any of the ERs or hospitals I've been in unfortunately :/ Over the course of the few days, I had to get a couple rounds of Dilaudid and one of morphine as the pain was unbearable, and I'm sure it did not help my cause. After that though, I started taking an oral Tramadol in between vomit bouts (so happy it's a very little tablet). It worked for the most part as it only needed about 30 minutes to kick in (but instant IV meds are so much nicer). [ more ]
rachelraven Tylenol does indeed exist as an IV med. It's pricey, though. It's used a lot in the ortho world in our hospital. I've asked for it in lieu of fentanyl during my dilations and seton placements. We use it in the ICU, too, quite often, but more often for fever than pain. It works well. [ more ]
LHetti Oh, my! What a story! I'm sorry. I don't have much advice, but wanted you to know that I'm thinking of you and praying for a fast resolution of all your symptoms! Keep us posted. Laura [ more ]
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J-Pouch ForumsGeneral Discussion
Have needle/knife with Shen Wednesday...
PouchomarxPouchomarx
Holly HM I have tried everything they have thrown at me and most of it will help for a while, but nothing has been a permanent solution for me. I talked to the surgeon last year and backed out of surgery. Unfortunately this past year has been one problem after another. I have had a fissure, a fistula and 2 dilations along with four different antibiotics this year alone. Diagnosed with IPD and pouchitis and then the constant leakage. Right now Cipro is holding me, but from past experience I know that... [ more ]
rachelraven Holly, I have a perianal fistula. While my pouch is "pretty good," we are trying Humira for my pouch changes and IBD symptoms. I'm no where near needing a pouch removal, but we're hoping the Humira helps close the fistula (if it responds and is truly an IBD related one, rather than a "structural" one)... Did you ever try a biologic for your fistula? Would you ever consider it, to avoid surgery? [ more ]
Holly HM I am having it done at the University of Mississippi Medical Center. They have a top notch surgeon there. I know it won't be easy, but I don't want to face all of these constant problems anymore. I have a fistula right now and I am afraid that the area around my tailbone seems to be getting a fistula also. Antibiotics work for a while but if I try to come off of them I too have pain, leakage, etc. For the past year I have been debating surgery and finally worked up the courage to have it... [ more ]
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J-Pouch ForumsGeneral Discussion
surgery to fix leak did not work???
PouchomarxPouchomarx
aka KNKLHEAD Ah, I got it, Poucho. Appreciate the clarification. [ more ]
Pouchomarx the tip of j pouch leak is not making me ill, i was put back to an ostomy on February due to the leak when my jpouch was attached and it gave me a bad spinal infection. The surgery was to try and close the leak so i could have the jpouch re attached. knklhead, Shens needle/knife procedures have worked for my sinus issues, the hole was addressed by the surgeon in an open surgery. Shen is out of town, but my surgeon wants to talk to him about his findings before he calls me back. from what i... [ more ]
aka KNKLHEAD Very sorry, Poucho. Can you get a consult with Dr. Remzi at CC? I love Dr. Shen, and I am very sure he HAS helped lots of people with his techniques -- but I think it's confirmed, he's over-the-top confident in what he can do. (That may seem a bit strong, but we can be honest on this board, right?) I truly hope you feel better soon! [ more ]
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J-Pouch ForumsPouchitis
"Chronic Pouchitis"
U urbhusker
TE Marie If you let your pouch rest you could also treat it with antibiotics without having waste running through it and that should, in theory, clear up any problems. I was in the hospital 16 days with my first surgery because I kept getting dehydrated. That is a long time. If I ever need to stay longer than the usual 2-3 nights I need to check out where you stay. We paid $112 Mayo rate per for a studio King suite last week with a good hot breakfast buffet at Aspen Suites. I usually don't get to eat... [ more ]
urbhusker My concern with leaving the J-Pouch and rectum in is that when I had the temp ostomy bag I frequently had bad days where I was on the toilet a lot due to uncontrollable mucus (in hindsight that should have been a warning sign) discharge. But Dr. Page mentioned that to me last year....let the pouch rest and possibly reconnect at a later date. I really do not think BCIR is a viable option due to location (and two weeks in hospital) unfortunately. But there is no reason why I cannot get an... [ more ]
TE Marie BCIR would be a better option in my opinion. Could you go back to an ostomy and leave your j-pouch to rest until you can arrange to look into the BCIR surgery? There are people who rest their j-pouches and then reconnect them. Then you could rest yours until it was turned into a BCIR pouch or you decide to remove it permanently. There is at least one person on here that went to an ostomy and left her j-pouch in several years ago. That sounds like something Dr. Page could do locally. I know... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Scope?
M mads101
TE Marie I've had it done with and without sedation. One time was enough for me to see what it looked like inside and every since I've chosen sedation. It is uncomfortable, especially if you have cuffitis and/or pouchitis. I figure I've had enough pain to last a lifetime so whenever I can avoid it I do. I had 2 children with no medication in my 20's and then got UC so I've paid my dues!!! [ more ]
ccanepa456 I am a teen as well and they always sedate me for a pouchoscopy (well Ive only had two because my pouch is still very new). I usually recover in the post op area for a couple hours before I am fully alert too. [ more ]
Scott F Folks here, at least, seem divided about sedation. Most docs seem to allow the patient to choose. The recovery question is really about sedation rather than the procedure. I've never had sedation for a pouchoscopy. I'd rather drive myself home. [ more ]
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J-Pouch ForumsGeneral Discussion
Hemorrhoids vs Cuffitis
John95John95
TE Marie I'm glad your pouch is ok John. I looked up the pudendal nerve and see that some of the suggestions included sitting on a blow up donut ring to relieve pressure. I probably had some paid due to that for at least 18 months. I still use my blow up donut when riding long distances in the car and when setting for very long on hard chairs. I bought cushions for our solid wood kitchen chairs too. The donut is especially helpful when I'm having tailbone pain during pouchitis. You pain sounds a lot... [ more ]
John95 Sorry for the delay in responding guys. My follow-up appointment went well. The doctor found nothing wrong with the pouch or cuff. Within a few days, the pain disappeared. I was fine for about a month. Yesterday it came roaring back with a vengeance. I have a feeling it's related to the pudendal nerve. The pain is terrible. I'm going to try to see some sort of doctor about this ASAP. Does anyone else have problems with their pudendal nerve? [ more ]
TE Marie Thanks for sharing your experiences with us Rachael. I found your GI's example of sending the samples to the pathologist very interesting. The pathologist said my biopsies from my last scope were all pouchitis. My GI diagnosed me as having cuffitis and pouchitis, even though the pathologist said the samples from the cuff,were pouchitis. I just didn't have ulcers or whatever as I treat my cuffitis aggressively with Canasa, mesalamine, suppositories almost daily. The pouchitis looked minimal... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gastrograffin - painful with new j pouch???!
M MaryMomof3
MaryMomof3 Thanks for the advice! I had it & it wasn't painful [ more ]
techwrench From what I remember 16 years ago,it was not at all painful.The tech. inserted a catheter very similar to an enema nozzle,and then had me lay on the x ray table. The contrast then flowed in by gravity. The only issue I remember was trying to roll from side to side with that tube in my behind. Pressure can't really build up, since the excess will flow into the ostomy bag. [ more ]
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J-Pouch ForumsGeneral Discussion
I'm going crazy
BebeksporBebekspor
JHendrix Hey Katie. I've been following your fistula post history and am hoping the best for you..... Let us know how the tampon test turns out [ more ]
Bebekspor A brilliant idea, I feel silly for not thinking of that. I haven't had a period since October 2010, ha, I forgot tampons even existed! Thanks! Katie [ more ]
Caty Hi, Try inserting a tampon. When removed, you'll be able to see if you're leaking stool into your vagina or not. Caty [ more ]
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J-Pouch ForumsGeneral Discussion
leakage after takedown
D dawn58
Lambiepie I agree with Mysticobra. Five weeks is very early. As your pouch expands and you get used to its sensations, you'll be able to hold everything when you need to. Once I learned to pass gas without anything else coming out too, I started wearing a pad "just in case" so I just wear one all the time now. [ more ]
Mysticobra Everyone is different. I am almost a year and still wear one. Mostly because I don't trust myself. Not because I need it. I do sometimes but no where near like it was at the beginning. You are only seven weeks. That is just starting. Patience. Gotta have it. It will get better. Slowly. [ more ]
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J-Pouch ForumsHelp! Need advice now!
obstruction
N Nela
sudie Hi Angela I have been dealing with a lot of blockages had a another one on Thursday even packed my bag ready for hospital, I did hot. Water bottle, walking around the house plenty of hot drinks I find pear juice is a mover I buy it in one liter container and down the lot fairly quickly with good results.had a laugh my husband came in after mowing the lawn all hot saw my pear juice and drank the whole container sent him running swears he won't touch pear juice again. Hope this helps [ more ]
skn69 Angela, A liquid diet is a good idea for now...grape juice, hot green tea, prune juice if you can handle it, loads of other fluids etc...nothing that can add to the already heavy load that you are carrying around with you... Abdominal massage with hot oil (massage in circles...it helps to stimulate evacuation), walk as much as you can and keep your hydration up. Any severe pain, fever or unbareable cramping and hotfoot it to the nearest ER. Obstructions are not a joke and if things are going... [ more ]
ratwoman75 Hi I have had mine since 93. I get blockage now and then. I do a hot bath and sit in it for awhile. That helps be pass what ever is blocking it. Yea u need to eat but eat soft foods and little bites. I hope this helps [ more ]
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J-Pouch ForumsGeneral Discussion
Adhesions and back pain
L LisaT
RocketSurgeon ❤️
TE Marie My j-pouch is large and it is up by my tailbone. I saw it in a contrast x-ray a few months ago. Everytime my j-pouch gets inflamed due to pouchitis I have increased back pain and now I know why. Maybe this could be contributing to your pain as well. [ more ]
rachelraven Plain X-rays show nearly nothing with arthritis, unless changes are way along and degenerative. Kid also was dx by X-ray for her sacroiliitis and enthesitis. [ more ]
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J-Pouch ForumsGeneral Discussion
thinking what was unthinkable..getting rid of my pouch
R Rebe0505
skn69 Rebe, Are you a candidate for a k pouch or BCIR? They are both valid options and give you a very good quality of life (not knocking the outside bag but...) If you care to look into it go onto the K pouch section of this site and post any questions that you may have. No one should have to live in constant pain, discomfort, leakage, misery, etc...solutions exist you just have to find the one that is acceptable to you. Good luck. Sharon ps. You can PM me at any time if you have questions [ more ]
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J-Pouch ForumsHelp! Need advice now!
Problem with output and gas
A anconrad
Nela I, too have been having similar issues and no-one seems to know what to do and I am expected to wait until my surgeon who built the pouch can see me. Even my internist doesn't know what could be the problem - maybe pouch function issues. I will let you know what I find out and maybe we can work together on a solution to our problems. [ more ]
clz81 Are you doing better? I was also discharged from an acute care/ER. with similar symptoms and not seeing much on scans. I went to the ER. affiliated with the hospital that did my surgery and was immediately admitted. You have some sort of blockage if nothing is coming out. [ more ]
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J-Pouch ForumsGeneral Discussion
BM odor
M MAS
CTBarrister In my case these are symptoms of pouchitis from bacterial overgrowth. Foul odor, difficulty emptying pouch cleanly or smoothly, and ultimately increased frequency and increased urgency are the hallmark symptoms. [ more ]
skn69 Meat, duck and some other protiens can make it smelly..so can bacteria. Check your input to see why your output is malodourous...Pepermint drops or oil as well as citrus oil can 'sweeten' the smell if it is natural and not a sign of something wrong. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone heard of the technique tapping?
Krys777Krys777
Jaypea Tapping is an evidence based technique to relieve or decrease lots of feelings. I first learned of it when I was supporting a friend who was going through cancer treatments. [ more ]
Krys777 Thank you guys so much for the replies!!! Skn69 -hmmmm very interesting re: your friend, a tiny bit discouraging. bebekspor-if your ever worried about going on a flight again, you should at least give this a try, see what happens.you should look up the video I watched, the website is tapping.com. Nice nurse- I'm so glad you saw this thread! What have you used tapping for that has been your biggest success? Have you used it for pain, an extreme amount? Seen results? [ more ]
Nice Nurse I am a tapping freak! haha. It's called EFT Emotional Freedom Technique. It's based on the same meridians that accupuncture uses, tapping on where the meridians end. By tapping on these points while focusing on a particular problem many people feel relief. I have even been to a professional practitioner who worked with me to release past traumas and it was nothing short of amazing. Check out the you tube channel of Brad Yates who is the best one online I have found for free. He has many... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Low Platelett. Watery bloody stools. Arthritis.
I Italian
Italian Thank you everyone you are very kind. Well, all a bit complicated, Luigi has the J pouch, 2 weeks ago diagnosed ITP and he had last year diagnosed Enteropathic Arthritis. This Tues he was re admitted to hospital as he had lost so much blood, he had been loosing loads of plum coloured blood in watery stools for a month. he got to A & E just in time and had 2 units. Since then in Digestive Diseases ward, so many transfusions, I don't know which is which..they also treated possible... [ more ]
Jan Dollar Thanks for the correction Rachel. I see that platelets are permanetly disabled, but replaced in a few days. Jan [ more ]
TE Marie I hope they have discovered the cause of his blood loss and he is doing much better after his transfusions. [ more ]
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J-Pouch ForumsGeneral Discussion
cuffitis and proctofoam
allswellallswell
Daleer Cuffitis is basically recurring colitis in the 1 or 2 cm of rectum retained for a j-pouch. Of course symptoms should be much less because you only have 1 cm or so of inflammation rather than an entire colon. Hopefully the doctor will get you feeling better soon. [ more ]
CJB Everybody is different, right? But I have to say that my 18 year old pouch started having problems that my surgeon diagnosed as cuffitis. I was on the canasa (Salofalk) suppositories and they helped, but only a bit, and my symptoms kept coming back. Then she prescribed proctofoam and it was exactly what my body needed. I took it for 3 weeks then did a slow wean off of it. It's been almost 4 months now and all is still well. Gotta at least try it. I think it worked well for me, as I always... [ more ]
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J-Pouch ForumsPouchitis
paleo/scd
R Rebe0505
CTBarrister For those of you who are basketball fans, NBA basketball superstar LeBron James went on the Paleo diet during the offseason as part of his training regimen. More about this here: http://espn.go.com/nba/story/_...amp-new-weight-class I happen to be a basketball fan generally and I love the way LeBron plays the game, and I am looking forward to seeing whether his goal of becoming quicker on the court will materialize. [ more ]
Rebe0505 thanks ct info is very helpful as to amounts allowed s.c.d. does not set any limits for day but i suppose logic would say if you have more issues like output increasing after eating 5 bananas you probably need to cut down! [ more ]
AllyKat For true Paleo you really should be eating grass fed meat and free roaming chicken. Has to do with the omega ratios. [ more ]
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J-Pouch ForumsGeneral Discussion
What ever happened with the IgG4 thing?
PouchomarxPouchomarx
CTBarrister Actually the only person I really heard talking about it was you. It was like a new form of of auto-immune disease but have not heard anything about it since you started a thread on it. I think it is a systemic disorder and not necessarily connected to J Pouches. It is an autoimmune disorder, not a J Pouch issue per se. AS is also an autoimmune disorder but you don't read much about it here. AS manifests in areas outside of the GI tract. [ more ]
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J-Pouch ForumsGeneral Discussion
vsl/orange juice
F F-TOY-120
Former Member ❤️
CTBarrister Your post raises two different issues, one is VSL being taken with orange juice, the other is whether the pouch function can change over time. There is a whole thread on the latter issue which you should read: http://j-pouch.org/eve/forums/...921/m/3087013076/p/1 There is some thinking that the pouch becomes more colonic in nature over time causing change in the way the immune system treats it. I have had my pouch 22 years and my function has changed in the last few years although I am still... [ more ]
Scott F Are you trying thickeners (e.g. Metamucil, Benefiber, Citrucel) and/or slowers (e.g. Lomotil, Imodium)? Those are usually the first things to try. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Constipation
C carolking63
TE Marie I don't think it it's normal to go every other day. Please contact your surgeon. You might have a stricture or some other problem. My GI says it isn't good to have stool in our pouches too long as it helps cause pouchitis. I think it can also help cause your pouch to enlarge big pouches can cause problems - like prolapsing. [ more ]
rachelraven So... do you have a J pouch? You say "top part of rectum," do you mean all but the cuff they attached the J pouch to? [ more ]
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J-Pouch ForumsGeneral Discussion
August 19th is my date to fix my leak...pray
PouchomarxPouchomarx
Jan Dollar I have no doubt that Dr. Shen was hoping he had come up with effective treatment for long standing fistulas without very invasive surgery, but it seems that this was a dead end. Innovation is how medical advances are made. Unfortunately, there can be a lot of missteps along the way. Even more unfortunate, are you folk who are part of the experiment. I guess this is why insurance companies are loathe to cover treatment that is not mainstream. I am sorry this just is not working out. Jan [ more ]
Pouchomarx the endo stitch failed. saw Shen yesterday and he stated it just will not work on jpouches..oh well. [ more ]
Pouchomarx noboby has had this endo stitch procedure yet. It is new and I think dtmack is 1st one having it done today by Dr.Shen. I am having it done on Aug 19th. It has been used for upper GI sinus/fistula issues but not for lower GI from what i was told by Shen. Hopefully we will hear from dtmack very soon to see if it worked or not. [ more ]
See all 28 replies...
J-Pouch ForumsGeneral Discussion
So scared!
A akteacher
Pouchomarx Shen tried the endostitch on my tip of j pouch leak and it failed big time. it was not flexible enough for the pouch and basically put another hole in my pouch. Had surgeon there just in case it didnt work, so had surgry to fix the leak. Saw Shen yesterday for a scope and he told me the surgery didnt work either, hole is still there.. I am mad,frustrated,depressed, and all the above. He is going to talk to my surgeon. He said he may try the biggest bear claw available and give it one last... [ more ]
TE Marie I'd like to add a second nod on the Vitamix or a really good blender will help pulverize fruits and veggies. I use a hypoallergenic protein powder that supplies 43% of the daily protein in one scoop, called PlantFusion. I make fruit smoothies with it. I also eat a lot of Greek yogurt and they supply protein as well. Hopefully this will help you until you find out what's going on. Since your case has developed into more of an emergency I would think that you wouldn't have to wait until... [ more ]
Lesandiego My prayers are with you during this difficult time. Sending healing vibes your way! [ more ]
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J-Pouch ForumsGeneral Discussion
Can anyone tell me?! Is leaking now a sign of what's ahead once they connect pouch?
M MaryMomof3
rachelraven This sounds crazy, but when my daughter had her first flare, I took photos of the bowel movements she was having, to show her GI. Perhaps photograph the "evidence" for your surgeon, to show him/her so they can look at it and let you know if they think it is normal, especially if you say it is less mucus like these days. But yes, mucus is an absolutely normal part of the in-between stage between loop ileostomy/j pouch and reattachment. Ah, technology today! My patient portal online to my... [ more ]
suebear It's completely normal and not a sign of leakage post takedown. Sue [ more ]
MaryMomof3 I mean rectal leakage- not stoma leakage. The first month it was odorless- now it smells like stool even though it's a mucous consistency- & it's more frequent- & it slips out into a pad- I can't control it...frustrating & makes me feel gross [ more ]
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J-Pouch ForumsGeneral Discussion
Incontinence with healing j pouch sign of long term incontinence after reattatchment
M MaryMomof3
suebear Mucous is slippery and will leak out no matter how strong your muscles are. Mucous is normal; if this is what you are dealing with you are fine. Sue [ more ]
skn69 MaryMom, Now might be a good time to looking into some Pelvic floor exercises to get the whole zone back in shape...you have carried kids plus major abdominal surgery and scar tissue...some times a little training with a physio therapist and practice, practice & practice some more until those poor, overworked, overstressed muscles are back in shape. I cannot guarentee that the results will be perfect but they should be much better. I do them sitting on the sofa, in the car, while... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Pouchogram Question
ATXGuyATXGuy
ATXGuy Thanks y'all. My surgeon's office confirmed that the radiologist wants clears the day before. Part of me is convinced I'm going to walk in and be handed contrast media to drink, but what the hell, it's been a strange year. I'll drink chicken broth tomorrow & hope for tge best on Friday. [ more ]
Bebekspor Mine was a barium enema, lasted less than ten minutes, not very uncomfortable. You'll do fine! Katie [ more ]
KOB I had mine done last week. Solution up the rectum and X-Ray. A bit uncomfortable, but no big deal. No fasting/fluid requirement although I hadn't eaten anything before. Pretty sure it's a pass/fail, ie. you have leaks or you don't. Whole thing took about half hour from getting into the change room to walking out. The only requirement is that you hold in the fluid, but, again, that wasn't an issue. [ more ]
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J-Pouch ForumsGeneral Discussion
recurrent blockages
Nice NurseNice Nurse
Johnny K I'm 13 years out from my 2 step and I have had infrequent blockages that have pestered me over the years. I think mine come sometimes from not what I eat, because I'm usually careful about that, but from eating too much. I think when I eat too much my system can't handle the volume coming through so I get blocked. But, yes, eating the wrong things and and not chewing well can contribute greatly. My Dr. also said that we can become blocked for no reason, other than our intestine twists or... [ more ]
chiromancer I know this sounds too simple but aside from the obvious "chew your food well" I have found that drinking lots with my meal ( not before or after ) makes a big difference. [ more ]
clz81 i would love the same answers! i've also had 3 in the last year. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
?? re: output from ileostomy vs. j pouch
KeepMovinOnKeepMovinOn
Pluot I needed 6 Imodium every day to stay hydrated with the loop ileo. I have never needed bowel slowers with my j-pouch. Generally speaking you will have more 'active' small intestine after your takedown so it is likely that your transit time will get longer. [ more ]
rachelraven Mine was faster than that. But I have a suspicion I have a longer small bowel, and absorb more water than some. I've never needed bowel thickeners or Immodium, etc. [ more ]
techwrench The output will be about the same until your body compensates. For me it was about a year and a half. [ more ]
See all 3 replies...

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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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