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J-Pouch ForumsHelp! Need advice now!
Crohns in pouch?
E Ellie85
CTBarrister I take methotrexate 15 mg once a week which is designed to suppress renal secretions of the Remicade and also take prescription folic acid to counteract the effects of the Methotrexate. As I said no issues and all of my blood labs are clean for 3 years. I should note that Imuran sent my liver chemistries haywire in the 1990s but no such issues with these meds. You keep talking about “unpleasant side effects”, I have had none in 3 years. I see many many patients in the Remicade room and while... [ more ]
Ellie85 Do both of you take an additional drug besides the remicade? The specialist I saw suggested combining it with azathioprine or 6mp. My impression is this might work faster than remicade alone and reduces antibody development against remicade? It looks like it increases the risk of being immunocompromised and has additional unpleasant side effects though. [ more ]
AARON I am 33 too, have crohns and a jpouch and take remicade once every four weeks. My GI says it's either this or likely lose the jpouch. I don't like either choices. With the remicade it's keeping the ulcers at bay, for now. I do get sick a lot. But I'm also on methotrexate. If you take remicade you'll also have to be on an immunosuppressive. Sorry about all the crap you're going through with your husband. That's rough. Speaking with a relationship counselor may help. I don't know. Dialogue is... [ more ]
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J-Pouch ForumsGeneral Discussion
Skiing and Altitude
D Drizzlewood
CTBarrister I had altitude sickness at the summit of Pike’s Peak which is over 14,000 feet in altitude. This thread is mainly focused on hydration but as you go higher up the air is thinner with less oxygen and it kind of creeps up on you. I had to descend quickly because I felt rather unwell and I was alone. Don’t forget that altitude in and of itself can have effects on your body and your head. Sometimes people get wrapped up in concern about one possible danger while totally overlooking another. [ more ]
cas For some reason I had an extreme amount of gas when we skied in higher elevations. Not sure why?? [ more ]
BillV When skiing in the Rockies, I made sure to drink plenty of fluids beforehand and eat a small amount of food. If you are skiing at Vail or similar places, ask about the availability of restroom facilities on the mountain. For hiking, you can use the woods if the need arises. Acclamation to high altitudes is no different with a j pouch than it was before he had surgery, but be sure to stay hydrated. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Chance of infertility?
M Marn
Ellie85 I have to agree with BUBBA1028. I was basically a worst case scenario for naturally becoming pregnant. On top of having the J-pouch, my colon actually perforated and I was/am filled with scar tissue. I had to have adhesions removed because I was getting pulling and blockages. The Dr who did the adhesion removal surgery was actually an OB and he said it looked bad (someone had also left one of my fallopian tubes stapled to my abdomen....) Anyway, after getting older and realizing I absolutely... [ more ]
skn69 Hi Marn, I had my first colostomy at age 2, then moved on from there. Nighttime and daytime incontinence were my life for years until I finally got my K pouch that sort of freed me to live my life the way I envisioned it. I tried to get pregnant after getting married at 19...I managed with difficulty but was never able to carry to term...my uterus was folded over. They called it a hemi unterus. No one could ever tell me if it was due to all of the surgery or just that I was born that way. [ more ]
Bubba1028 They say that there could be scaring and adhesions that might make it difficult to get pregnant. That being said, I tracked my cycle and within 2 months of trying to get pregnant, my husband and I got pregnant! So I think, in my opinion, it depends. They do have a lot of resources out there like IVF and even a few tricks up their sleeve that they can try before IVF. See how it goes for 6 months and I think the rule of thumb is to follow up after 6 months (or a year, if your younger than 35)... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch irritation from food intake
A ajcm
Raj I think I know what you are saying. Post takedown I was at home for about 8 weeks and it was all good but when I joined back my college and started having food in mess, it caused severe loose motions. They had extra spices in the curries and what not. I just eat foods that are easy to digest like brown breads, butters, tea most of the time in mess. Eggs I boil in my own room. I even prepare oats and eat lots of bananas. And if still I have to eat there or outside I usually eat only... [ more ]
CTBarrister What you are describing as “pouch irritation” actually sounds more like a motility issue. If so it has nothing to do with what you are eating but just the fact of eating anything will cause bursts of bowel movements right after meals. I would suggest taking an anti-spasmodic 45 minutes before each meal and see whether it clears up what you are labelling “pouch irritation.” If that doesn’t work, you may want to try isolating what foods might be causing the issue. However it sounds like you... [ more ]
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J-Pouch ForumsK-Pouch Korner
Fart
skn69skn69
skn69 Yes, it would be kind of fun to have some sort of 'duck whistle'' in there to let out air... [ more ]
Bubba1028 That’s funny and scary at the same time! Glad there wasn’t a leak or any other surprises! O had horrible gas pains on the way home from work today and was wondering why we can’t fart like normal people. I think we have enough muscle to keep stool in but maybe not gas? So weird, but hey, I’d go with it! Maybe it’s bc you e put in your dues for so many years (post surgery)! 🙌🏽 [ more ]
BillV A fart now and then makes those of us with pouches seem almost "normal". Happy to hear that you did not blow a valve. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Please Help. Surgery imminent (24 hours). Wife has twisted small bowel
T Tziolas2004
Scott F I’m not sure a colorectal surgeon would be the best choice here, since the problem doesn’t involve a colon, a rectum, or a J-pouch. The good news is that this is a fairly straightforward surgical problem, even though there is nothing routine about it for the person going through it. If the bowel is so twisted (usually due to an adhesion) that the blood supply is cut off then that portion of bowel begins to die. That’s a life-threatening situation. The delicate balancing act is that some... [ more ]
CTBarrister To deal with such a situation I would certainly want an experienced colorectal surgeon. I am very sorry to hear of your wife’s situation and that the care she is receiving is constrained by insurance coverage. Perhaps, an appeal in this situation could lead to expanded options. I would look at your policy carefully to see if exigencies can be invoked to get her moved to a more specialized facility. This is a very, very serious complication and perhaps you can move up from AAA to the major... [ more ]
Jeffsmom First let me say how sorry am that you and your wife are dealing with this. Second, where in Utah are you? I have a nurse friend from Utah, and just might know someone depending on where you are and where she is from. Now. Trauma surgeons are usually the best surgeons because they work under difficult circumstances more often then not. But they are no experts in anything, just good at handling stress. I would first try for colon Rectal. Scream and yell if you have to. Having am open surgery... [ more ]
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J-Pouch ForumsGeneral Discussion
UC/Crohns and lung problems?
LORI726LORI726
Lesandiego Interesting... I have had 2 pulmonary embolisms.. but, I was on prednisone both times. Last year, I had viral bronchitis (caught it from my roommate) that turned into congestive heart failure. Once they inserted a swan catheter to drain the fluid... I have been feeling great!. Of course... once again, I now have nasal congestion and a cough (caught it from my co-worker). [ more ]
LORI726 Thanks all! Isn’t it enough having poop problems?!? Why do we need to have breathing issues too?!? Good luck to both of you!! [ more ]
ElmerFudd This is interesting to me. I have had allergies and shots since I was 3. For the most part, things are pretty decently controlled. However... the last several years I have had recurrent bronchitis 1-2 times a year, and have been really frustrated by that. So there may be something to the IBD-lung connection. [ more ]
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J-Pouch ForumsGeneral Discussion
where does the jpouch come from?
A Andreita
CTBarrister The key in fashioning a J Pouch is leaving a small rectal cuff that is nevertheless functional. It’s the only part made of colonic tissue. My surgeon was the late Irwin Gelernt who was perhaps the best colorectal surgeon in the USA before he passed away in 1996. His work on my recital cuff has been repeatedly praised by my GIs for 26 years now. [ more ]
Former Member The image you've posted, its a little misleading. The bottom section of the small intestine, I guess, about 6 inches, is stretched and folded back on itself, forming a U at the bottom, so in effect, now there are two tubes of small intestine sitting side by side; which are stitched together. Then, the inner walls of both these intestinal tubes are cut down their length to create the J Pouch. The bottom section, in the form of the U (mentioned earlier); an opening is created which is stapled... [ more ]
Scott F Andrina, the pictures you’ve included would only both occur in a three-stage procedure. Here’s a description of that from the Cleveland Clinic: The first phase consists of removing the colon, leaving the rectum behind, and giving the patient an end ileostomy for approximately six months. (Most patients report feeling considerably better after this surgery.) The second phase consists of removing the remnant of rectum, creating a J-Pouch, doing an ileal anal anastomosis, with diverting loop... [ more ]
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J-Pouch ForumsGeneral Discussion
Where to stay for the Cleveland Clinic
J JHendrix
JanW2 Hi, Take a look at the IHG site and put in Cleveland Clinic and you can get rates as low as $90 right on the grounds of the Main campus of CCF. Depends on your dates. No transportation needed then and they do have a free shuttle to the different areas of the hospital between the hotels. A pop-up on the site also will compare other prices such as bookings.com also . Dr Shen is my Dr also and I really love him. Jan [ more ]
JHendrix I like the price. How does one get to the clinic from there? I won't have a car. Thanks. [ more ]
JPouchJoe I recommend either the Hampton Inn or Holiday Inn located in Independence, OH. They are just outside the city in a nice neighborhood. Both offer special "Cleveland Clinic discounts" upon request. They are comparable in price (less than $90 per night). My preference of the two is the Hampton. Rooms were recently renovated. [ more ]
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J-Pouch ForumsGeneral Discussion
Heading into Cleveland Clinic - Dr. Remzi re-do
aka KNKLHEADaka KNKLHEAD
AK-NY just to post in regards to my recovery from the redo procedure I wouldn't want to bore people with my background, but to summarize i had a failed pouch which was determined right during the take down procedure. For the Redo pouch procedure I chose NYU Langone over my previous hospital. I was lucky to discover Dr. Remzi had just moved to NYC where I reside. My mother and a friend had pushed me to get a second opinion. As i already had an illeostomy, step 1 of the redo was the construction of... [ more ]
NJshoremom AK-NY, I wish you a speedy recovery. I'm going in for part 3 on Oct 3. I was interested to know how long they keep you in NYU for part 3? Part 2 of the revision was very rough. I truly believe the only way to fix the failing pouch was the revision. There was so much going on that no medicine could fix. Strictures,fistula,intestines were a tangled mess,fused together by scar tissue, large hernia. My pouch was a goner. Thankfully now I'm feeling great. New j pouch is looking good and waiting... [ more ]
AK-NY I just had a redo with Dr Remzi 6 days ago in NY. My last jpouch made was by one of the top surgeons a year ago. Remzi upon surgery also noticed a twisted top part of the pouch which was not observed on any CAT, MRI or xray I was required to take over the past year. Once I am out of here I will write a post on all specifics of how I am. [ more ]
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J-Pouch ForumsGeneral Discussion
Xifaxin Coverage
ktakta
kta Thanks for the replies. Tindamax sounds interesting. To be honest, this whole rotation thing has thrown my pouch for a loop. I have been almost living in the bathroom ,get horrible spasms, stool consistency varies from diarrhrea to too solid to pass. I have been doing enemas daily just to get the pouch to empty. My new doc, while impressive on the first meet, does not follow through on requests for prescription refills unless called constantly. This has made me rush all over town picking up... [ more ]
LORI726 Agree with tindamax🙌🏻 Although Cipro was my all time fav! Good luck! [ more ]
Pouchomarx Try tindamax [ more ]
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J-Pouch ForumsGeneral Discussion
Weird stuff going on
Adelle007Adelle007
rebel Adelle I think you've probably had a different procedure to me. I had two part surgery. The small bowel was connected to the stoma (abdomen), that's where the stoma bag was placed for waste. The pouch was created and connected to the anus and left to heal; nothing at all came out at all until everything was connected. [ more ]
Adelle007 Thank you for your answers..i know this isnt right, probably inflamation im my j pouch, i will ask for more tests.. [ more ]
CTB23 Same here, minimal discharge on occasion, not what you are talking about. [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch failure & complications.
J Jkpgl
Mysticobra Yes. Day and night difference on how things are with a loop and an end. I have an end. So easy. I had a temporary I had nothing but burn and pain from it. Leaks. Everything. My end ileo is no problem. If there is one it's usually my fault. ( applying a wafer wrong or not getting the bag completely snapped on.) I just did that too. My fault. Most of the time I don't even notice I have an appliance on. Only when I empty am I reminded. Which is good. Whatever your wife chooses. Good luck. But... [ more ]
TE Marie A permanent/end ileo is where the small intestine is cut and the end is put thru a hole in the abdomen. End ileos can be reversed too. A temporary/loop ileo is where they pull a little of the intestine thru an opening in the abdomen and create a little loop in the intestine. I had a horrible time with the temp ileo. The permanent one is much better. [ more ]
Scott F And ring, a temporary Ileostomy is most commonly a loop ileostomy, not an end ileostomy. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch Not Working
N Narbus
Narbus Thank Scott. I drink water like crazy. My surgeon thinks I have an issue in upper GI tract where my body produces thick stool. Says is not really curable. When I had colitus I had the same issue. Very seldom did I ever have diarrhea. I will def try some psyllium husk and see if it helps. [ more ]
Narbus Thanks Doug I will look into. I really do suspect I have a problem in that area. It seems like sometimes I actually have to push on my stomach to move the poop out of me. Happy to hear the therapy helped you. [ more ]
Narbus Thanks Jan. Very good advice. I found a Dr at Yale where I had my surgery. I will see if I can get an appointment. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J Pouch, Insomnia, and extreme weight loss
C cinmarc
Francesca Hi i have had a j-pouch for nearly four years. In itself it seems to be going ok but ever since surgery I have had almost continuous urinary tract infections and have been unable to sleep. Has anyone else had these same symptoms. Actually the UTI s seem to be getting worse and maki g me feel really bad. [ more ]
TE Marie He might need the antidepressant. The colon is involved with making neurotransmitters used in our brains. Since he no longer has it there is a possible physical need for them. Also going through these surgeries can cause situational depression and antidepressants might need to be used until he gets more use to everything. Do a search on "the gut as a second brain" for more information about neurotransmitters. [ more ]
Raj Loosing weight on a J pouch in early days is pretty normal man. They've made a whole together new storage. Body needs time to adjust to it. Initial months of J pouch arent the best. Instead of going to doctors who dont know what they are doing he should start monitoring things for himself. Instead of taking anti depressant if he goes for a morning walk I bet in one month he'll see how much better he feels. It can take months before coming to a near normal state. Tell him to stop expecting to... [ more ]
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J-Pouch ForumsGeneral Discussion
extended release meds
A Andreita
Scott F Release time is only part of it. There are different pharmaceutical strategies for extended release, some of which are engineered to release in a specific part of the intestine, and some of which are designed to be metabolized at multiple rates. In general I’d suggest avoiding extended release meds if you lack a colon, since you may get unpredictable results. [ more ]
Andreita I have the stoma for now [ more ]
CTBarrister It depends on the release time and transit time. I think the transit time for J Pouchers is less than 4 hours. You need to inquire of the release time of the specific med. [ more ]
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J-Pouch ForumsGeneral Discussion
Just had a pouchscopy
R rebel
rebel Jan Dollar Many Thanks. The Doctors got me on the Pouchitis thing; I'm under the impression that people with J pouches have a degree of Pouchitis all the time; they prescribe antibiotics after it reaches a specific level. I'll speak to the Pouch Nurses about antibiotics. To me everything you've said makes sense - 100%. [ more ]
Jan Dollar Yeah, well those junior docs were wrong, I think. Ulcers, especially multiples with symptoms, mean pouchitis. Antibiotics are the main Rx. If they do not work, MS (if it winds up being apositive diagnosis) will be a contraindication to treatment with biologics. Many docs would not need to wait for biopsy results to treat this pouchitis. The biopsies just help to rule out other issues. If it does turn out that you have poor blood supply (ischemia), there is not a whole lot you can do about... [ more ]
rebel Scott F The ulcers have been present in all of the last 3 pouchscopy's. The junior doctors have just said 'you don't need to worry about them' and dismissed them. I've done some Googling - from an article, someone suffered pouchitis symptoms from one ulcer. https://www.ncbi.nlm.nih.gov/pubmed/3731967 [ more ]
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J-Pouch ForumsK-Pouch Korner
Dr. David Dietz
SA Sydney AZ
ljk Hi, I met Dr Dietz and felt very comfortable with him. He is very knowledgeable about his procedures . I have a malfunctioning J- pouch because of a angulation in the pouch and plus a lot of scar tissue from previous surgeries. He first recommended another pouchoscopy, he wanted to view with his own eyes. So I proceeded and then explained that the J-pouch can not be revised and mentioned this K-pouch that I do not have a lot of knowledge about. Ok , now I am even more concerned the stoma... [ more ]
dpol Sydney: I am very sorry for what you have been through! A few thoughts 1. I would contact other doctors to see if something can be done to get your kpouch back. I am a big fan of Dr. Beart in Glendale,Ca. Someone said his is no longer operating, but I think he does consultations and has trained 2 wonderful doctors under him. 2. If you can not get your Kpouch back, then maybe they can adjust your opening to make it more comfortable for you. 3. Though I can not speak for all men, I can speak... [ more ]
Jan Dollar Sydney, sorry about your unfortunate turn of events. Does not sound at all what you were expecting. However, please remember, this site is for support and advice and we are not to wage campaigns against doctors, hospitals, etc.. It is OK to voice your displeasure, just try not to let it go too far. If I recall, you had a history of a lot of complications like Crohn's, fistulas, etc., and you were looking into a number of "last resort" treatments, like hyperbaric oxygen and growth hormone. [ more ]
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J-Pouch ForumsHelp! Need advice now!
constipation/inflammation? pouchitis or sibo?
S SandraD123
Raj Heartburn for me usually like an acid reflux. There's this sour liquid that seems to be present in the food pipe. I get them if I eat too much sugar foods or something fried. I am not a big drinker so cant comment on that. In past I used to take any antacid like pentacid once a day to hold back acid built up. You can ask your GI about them. Also I'd recommend not drinking on an empty stomach. I've done that and paid for it. [ more ]
Scott F You might have had a partial obstruction. That rarely has anything to do with the pouch, and generally is caused by adhesions that narrow the small bowel somewhere along its length. Adhesions are difficult to diagnose, though. [ more ]
SandraD123 Thanks for the response Scott, That is a big problem for me.. moderation... haha.... I never get heartburn... this was like the pouch was sleeping... like nothing moved and i felt nothing that low ... i couldn't put much in and everything just backed up into the throat... I was very concerned about a pouch twist or technical issue with the pouch.. tried the cipro first hoping it was pouchitis or sibo... Dr Shen wanted those additional tests i think because of the backing up that i felt... it... [ more ]
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J-Pouch ForumsGeneral Discussion
Gallbladder removal question?
PouchomarxPouchomarx
Accept It I had my gallbladder removed about 10 years after take down. It was not able to be done laparoscopic due to adhesions. My colon surgeon was in the operating room to make sure my pouch looked ok and for any emergency that may arrise. Everything went well. Good luck. [ more ]
Pouchomarx any concerns with them doing lapro and poking the intestines since we don't have normal anatomy and things are in different places?? [ more ]
melissa111 ❤️
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J-Pouch ForumsGeneral Discussion
Retired Military with Medicare and Tricare for Life-Pouchoscopy coverage
C CTB23
CTB23 Thanks for the information. I'm due in July and may wait until I have both insurances in October. Right now, I have just Tricare and would most likely have to pay part of it. [ more ]
Just John I am also a military retiree with Medicare and Tricare for Life. I had J-pouch surgery in 2008 (when I had both insurances) and have annual pouchoscopies since then, all at Mayo Clinic in Phoenix. The two insurances cover the cost of the annual pouchoscophies. [ more ]
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J-Pouch ForumsK-Pouch Korner
Looking for advice.
KS Kim S
Kim S Janet:Thank you. I will definitely have some hints. Woodstock69: I’m not giving up yet! Especially since I’ve been wearing Ostomy bags for the last month. [ more ]
JLH kim-Sending white light for your surgery tomorrow and empathy for one arm k pouching. I’ve done it, although not very well. looking for techniques due to upcoming shoulder replacement. Janet [ more ]
woodstock69 I can hardly believe you are still fighting to keep the Kock! You have endured too much. hugs [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery Pain?
n/an/a
skn69 Try buying a sunlamp! [ more ]
n/a Light on the butt burn is an interesting idea, which I will be trying - thanks! It is winter here in Ohio - butt even if it weren't, I don't think I could find a private spot to let the sun do its thing I'll probably be calling or writing my surgeon's office this week, just to update them on things. Thanks for your words of encouragement, and to everybody else who has responded. They help put my busy little mind to rest. [ more ]
skn69 For the butt burn in the crevasse..nothing as good as sunlight, unless it is winter where you are so you need to lay on your tummy, butt naked, with a light shining on it for at least one hour/day...twice/day if possible...or use a sunlamp. It helps to dry it out and heal it without meds, creams or stuff. I know that this is a hard time right now but it is passing...things will start to hurt in the most bizarre places, the pain migrates, moves, disappears to reappear elsewhere...your organs... [ more ]
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J-Pouch ForumsK-Pouch Korner
Cathetar folded again, No Surgeon or real Support in Oregon for BCIR or K-Pouch.
W WillLive4ever
LuckyLady I agree that the catheters are not as firm as the once were. and the holes are somewhat larger, making them bend more easily. In my experience, the catheters soften with use. I change them every couple of months, or when they start to fold. I must use the technique of introducing the catheter through the valve with a smaller catheter inside as lead, however. Comes up against a wall otherwise. Thanking skn69 for the much-needed support when I was in hospital with a blockage 20 months ago. [ more ]
WillLive4ever Dear Sharon, I have fortunately been doing very good. I understand about the hardened caths and have had them eventually crack in places where they cut into me so I am checking them usually ever since that incident. But lately I have been using the Medina instead of the Marlen as for me it seemed the Marlen were more easy to bend or soften. I take that point about the frozen caths seriously and I can not quote who gave that info to me now but I think it was someone that would know.. but I... [ more ]
skn69 Just a note Will, This happens essentially with the new Catheters which is why I keep reusing the old ones for years (up to 10yrs or until they fall apart)...they stiffen with age and make the path easier to navigate. I just cracked 2 old ones while out of the country for work. Freaked right out...had to use a new one (I travel with 3 kits thankfully...1 in purse, I in carry-on and 1 in backpack for security and reassurance...2 out of 3 broke!) that was soft and weak...I ended up taping the... [ more ]
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J-Pouch ForumsK-Pouch Korner
Sucesses for continent ostomies
JaniceMJaniceM
skn69 K pouch since 1979, numerous redos due to an other underlying disease (Ehler's-Danlos...a congenital collagen deficiency that that means that I do not heal like other people, my body does not make the 'glue' needed...so I fall apart at the seams). I moved across the Atlantic and started a new life in France thanks to the k pouch. I teach, lecture and travel. I would have never dared to do any of these things pre-pouch and wouldn't have had the courage with an ileo. My pouch gives me liberty,... [ more ]
EmilyJT Thank you, I'm currently deciding whether a KP is better for me than an ileostomy and it's looking like the way to go! [ more ]
EmilyJT ❤️
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J-Pouch ForumsGeneral Discussion
Difference in pouch function after removing gallbladder?
PouchomarxPouchomarx
skn69 Neither. I am a Very, very bad eater according to the French. I tend to eat a high fat/high protein diet meaning chunks of cheese, cherry tomatoes and olives for lunch. Grilled or cooked meats and green veggies for dinner...mostly very little in the carb department and when I do it is with butter and cheese. So the fats tend to send me into spasms. Sort of like a cramping around where the gallbladder used to be. Phantom pains. I've had ultrasound, been checked for liver enzymes, nothing... [ more ]
Pouchomarx When you say you can’t handle fats as well, what exactly does that mean? Moves through quicker and diarrhea? Or pain? [ more ]
skn69 Not sure what the other people are feeling...my output got thicker (a problem with a k pouch) but other than that...nothing really different. I do not handle fats as well as before (but then again that could be age)... [ more ]
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J-Pouch ForumsGeneral Discussion
Cleveland Clinic for fistula repair
J JHendrix
n/a Hi JHENDRIX - I saw Dr. Shen back in early '11 for fistulas. He did doxycycline injections in my fistula in the hope it would scar and close. Didn't work - it was actually experimental, which it seems is not uncommon for him. He only assured me there was no harm in the procedure; I was desperate for help, so went for it. He had me do a scope and injection every couple of months, which added up $-wise, although I'd have to do some digging to come up with a $ amount. In the end, he referred me... [ more ]
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J-Pouch ForumsGeneral Discussion
Loud belly noises?
M Marn
Bubba1028 I usually just say, “wow, I’m hungry!” Or play it off like It’s hunger pains. Usually most but it, but most don’t care. It sometimes wakes me up at night, even tho we sleep with a sound machine! I sometimes refer to it as thunder growls lol, bc it sounds like thunder! [ more ]
Aimc Marn, I to have the same thing. For me it doesn't seem to have a trigger. [ more ]
Melfie No I'm not gluten sensitive or caeliac either, but i find when i eat bread is when my stomach is at its worse. [ more ]
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J-Pouch ForumsHelp! Need advice now!
FtM (trans guy) seeking experiences with hysterectomy after life with a pouch for familial polyposis
DoughBoyInPHL78DoughBoyInPHL78
DoughBoyInPHL78 Hi c Jay, Glad to hear from you. Yes Dr Richards is very warm. I sensed that right away. I'm looking forward to being rid of parts I have no need for and never felt they were a part of me its like I was dis associated from them from the moment of realizing I was trapped in the wrong body and that I needed to take the appropriate steps and fix or align myself so that I can live etc. Thankfully Dr Richards works with insurance and I do have a cyst measuring 4.9 by 4.0 which is in an if itself... [ more ]
CJB 5000 lbs, I was hoping that was a typo! you sound like you’re in great hands. The da Vinci robot operated on me twice. Once for my hysterectomy after my cancer diagnosis 2 years ago. And then again a year later when I had a reoccurrence in a pelvic lymph node. The first surgery was tough, but I was in the middle of chemo so everything was tough at that point. But still I was only in the hospital for about 2, maybe 3 nights. With the 2nd da Vinci surgery I went home the next day. For sure... [ more ]
DoughBoyInPHL78 500pounders not 5000, typo [ more ]
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J-Pouch ForumsGeneral Discussion
nerves and frequency/urgency?
TeacherladyTeacherlady
Teacherlady Hi Mel - Thanks for your response! I will indeed mention it to my surgeon, but due to an insurance mess, I will need to wait a month before I see him. The thing is, this only happens when I am a tense social/eating situation. The other evenings, when I am at home, I tend to have a large soft-formed stool (thanks to Metamucil) and be done with the bathroom for hours! [ more ]
Melfie Hi teacherlady, have you spoken to your GI or Surgeon about having a dilation? I have had my jpouch for 6 years now and from memory i had a couple of these procedures early on. I am on the wait list to have another one now. I do know the pain you are talking about - does it get relieved with emptying? I also find when its bad a course of antibiotics (ciprofloxacin & Metronidazole combination) helps me. [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics and dietary advice
MelfieMelfie
Melfie Wow thanks everyone for the amazing advice. Scott i had a sigmoidoscopy last week and they have ruled out a fissure. Plus i have had two different drs examine me. Im now booked to have an MRI scan and then the stricture procedure. Unfortunately things dont happen fast here in NZ so i have a 6 week wait (gulp) [ more ]
Scott F Melfie, your pain sure sounds like an anal fissure. How was it ruled out? Sometimes a second opinion can be very valuable. [ more ]
Melfie ❤️
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J-Pouch ForumsGeneral Discussion
prostate removal w/ j pouch
V vince66
vn17137 66 years old. J-Pouch from 1989 (history of UC). BPH from 2008 (last measurement 127cc). My pouch has given me all sorts of issues since 2014, which is when the prostate exceeded boundaries and encroached upon the pouch. Accelerated bouts of pouchitis for the past 4 years. After multiple catheterizations during the years as a result of AUR, Oct 2018 I was unable to successfully withdraw use of the indwelling catheter and went immediately for the prostatectomy option. My urologist had never... [ more ]
vince66 thanks for the reply - received J pouch at age 50 (I'm now 66) in 2 step procedure and also had my gall bladder removed in 2008 - have never had any problem w/ either (eat and do whatever I want - life no different than before either surgery) but I assume I have lots of scare tissue which could complicate further pelvic surgery - don't know if I will ever need prostate removed but would like to know if I do if my pouch will be compromised [ more ]
Jan Dollar I would imagine any additional issues with prostate removal for you would be related to the degree of adhesions (scar tissue) that has formed because of your rectal dissection and j-pouch. If your urologist thinks this is a big deal, you probably should seek a second opinion from someone with more experience. But, if he is confident in his skills and only being up front about possible pitfalls, that is different. There are a few here who have had prostatectomy. Have you checked the Men’s... [ more ]
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J-Pouch ForumsHelp! Need advice now!
entyvio
BA Bill A
Bubba1028 There’s is livingwellforum you might want to try. Lots of UC and Crohns patients can talk to you about their experiences using Entyvio. From what I understand it’s relatively new in comparison to Remicadd and Humeria. I used it for a few months and it was not successful, but I do know of people who have had success. It has less side effects than the others and targeted more just on the gut. [ more ]
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J-Pouch ForumsGeneral Discussion
Advice for Best UK Colon Surgeons
J Jawesome
phdwithpouch +1 for the surgical and clinical teams at the John Radcliffe (& The Churchill in Oxford). Used to be headed by Prof. Neil Mortensen who like Sagar above has done operations on various celebs with UC/Crohns, though I think he has retired in the last few years. He did my emergency subtotal colectomy and the rest of his team did my J-pouch and the other ops that I had. I've also heard of St. Mark's in London being good, it was at St. Mark's that Sir Alan Parks pioneered the J-pouch in the... [ more ]
New pouchie Prof Sagar in Leeds is very good. He receives referrals from all over the UK for all things pelvic surgery related including ileoanal pouches. He has done pouches for a couple of very famous people as well so that says a lot! [ more ]
Paul H I've heard John Radcliffe near Oxford is good, echo St.Marks. You say you live in Europe, I had excellent surgery at Bellvitge in Barcelona, all their colorectal surgeons have had experience at St.Marks, in Tarragona there is an American surgeon Monica Millán with huge knowledge. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Coccyx pain after j-pouch removal
E Emma432
Emma432 Hi N/A, thanks for the Information, I‘m happy for you that you don‘t have to deal with it anymore! I‘ll see if it gets better over time, my pouch is gone so I hope for the best. Doing the exact same with the gauze/pad thing, over time you just accept and find ways to keep your pants clean. [ more ]
n/a Emma, the rectal discharge continued until I had the pouch removed . There was a period of time right after disconnection where it got quite severe - I couldn't even make it to the bathroom in time. It did lighten up just a bit as time went by, but it never stopped. I found it helpful to keep gauze in that area 24/7 (although it needed to be changed every time I peed), along with wearing a pad. There is currently no discharge anymore of any kind since the pouch removal - not from the pouch,... [ more ]
Emma432 Hi N/A, thanks a lot for your reply, I‘m very sorry for you too, hopefully you feel better now that the inflamed pouch is gone! I hope you recover well from the surgery. I suppose my rectal discharge also comes in surprise attacks, I just don‘t notice as it goes directly into a gauze swab. May I ask if it stopped or at least got better over time? Do you still have it now after your pouch removal? Sorry for asking such indiscreet questions, but for such details I rely more on the personal... [ more ]
See all 8 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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