Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsHelp! Need advice now!
Lots of trouble: abscess, possible cuffitis, urgency and bleeding.. Is Jan around?u
W wsh6745
d.barnett Thanks Scott Im not sure if its fissures. Ive had my Jpouch for about 11 years but Im stubborn and do not get it checked out when broblems come around. Ive been calling this pouchitis but the medication isnt working so Im about at the end of my ropes with it. Im not even sure what a fissure is. Money is an factor with me not going to the dr. just thought asking for help couldnt hurt. Thanks so much; DB [ more ]
Scott F If your pain is partly due to anal fissures there are some reasonably helpful things you can do, including sitz baths, keeping your stool soft, and absolutely not straining on the toilet. I'm not aware of any effective home remedies for cuffitis. [ more ]
d.barnett Hi, I havent been on this sight in many years.But Im having problems and not sure on what to do. I have bad pain in the anus area when I have a bm. I also have a lot of bleeding. I have been going on line and it sounds like I may have cuffitis [not sure]...Im trying to hold off on going to thr dr. until after the holidays. Does anyone know some home remidies that may help or is the Dr. the only way to get help? [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Cuffitis
D dds
Barbarkearney Thank you for your input but I've my pouch 20 years now this comes and goes at different times at the moment my flare up is in to its 3 week extra 3 of bedesonide so up to 6 a day 800 of metronidazole now I'm either too solid or too loose can't win still going about 10 -15 times a day night mare glad not alone. [ more ]
Winterberry Hello, barbarkearney. Soon after my reversal, I had the same sharp, shooting pain when I sat down, even if sitting on a soft sofa or bed. It would start at the anal area, probably where the join is, and shoot up toward my stomach. Was very worried about it. I asked my surgeon and he said it was caused by the inflammation from my surgery and also from frequency in those first few days of use. It went away after 10 days or so, can't remember exactly how soon, but I didn't have to take any pain... [ more ]
Barbarkearney I live in Belfast anyone on here from the same place to compare notes [ more ]
See all 11 replies...
J-Pouch ForumsHelp! Need advice now!
Should a Seton be placed in to drain fistula before sugery?
F fistula3yr
JJA I will caution you against them doing the typical "lay-open" procedure. I had a pouch and that is the procedure the surgeon did on me for my anal fistula, and it left me with damaged sphincter muscles and incontinence. I had a sphincter repair surgery after that, which helped some, but still left me functionally incontinent. I have learned ways to live with this, but I sure wish they had offered me a drain or other more conservative options or communicated to me in any way that my... [ more ]
fistula3yr Jeffsmom, What you have been through must be terrible. I cannot imagine my children have this kind of problem since such a young age. I've seen some website on internet mentioned that kind of bio-plug. Wish the experiment will be successful and your son feels better thereafter. Jim [ more ]
fistula3yr hi Jan, Your theory is some relief for me However after soaking, I feel more pain a few hours later. Maybe that's because I just had incision yesterday. All the best! Jim [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
New loop oleostomy causing issues
S Sada
Winterberry Hello, Sada. Are you using a moisturizing soap or gel to wash the area? The oils in these products could be making the wafer adhesive less effective. See if using plain Ivory soap, or Neutrogena, anything that is free of moisturizer or oils will help give you a tight seal. Also make sure you press the ring all the way around, 360 dregrees, to ensure a full circle seal, and not just where you hear it "click". Before my reversal I used to leak twice a day until I figured out I wasn't pressing... [ more ]
Former Member I also appled a Salts Stoma Collar on top of the ilex and over the Stoma. in fact, I use to affix the Stoma Collar onto the back of a fresh ConvaTec mouldable flange just prior to removing the old flange. Then, after applying the ilex paste, I could just slip the flange complete with collar over the Stoma In the US; Salts Stoma Collars are available from: http://myostomy.ca [ more ]
Sada Thanks for your reply I will defenitly try the ilex paste! And yes I have found Convetec product to be the best! [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Help with removing stoma wafer!!!!
K KC23
Winterberry Hello, KC23. The type of soap you use could also affect the adhesiveness of your wafer. Try not to use moisturizing soaps or cleansing gels. The moisturizing oils in these products might cause the wafer to loosen and you'll have a small leak. I used a bar of plain old Ivory soap. I had small packets of remover pads from Coloplast and would gently dab, dab along the edges of the wafer as I pressed my skin away from the sticky parts, then a warm washcloth to dab the skin, looking for rash or... [ more ]
Brad1 Not sure if you grow hair around the stoma, but if you do, make sure to shave the area during each change. Several days of hair growth under the adhesive hurts very much when you go to remove it. [ more ]
CeeeeCeeee Use a warm hair dryer to ease the wafer off your skin. Gently separate the wafer from your belly. Don't tug or pull.....just ease it off. Best wishes! [ more ]
See all 16 replies...
J-Pouch ForumsHelp! Need advice now!
J-pouch removal & permanent ileostomy surgery
J Jmama
Lambiepie I've been having trouble logging onto this site and just saw this, jmama. Whew, I remember what was to be my takedown in 2010, waking up and feeling my ostomy bag still there - too much scar tissue, my surgeon said. I couldn't even describe the feeling. Got over that and then five years later, speaking with my surgeon and knowing, before my jpouch removal surgery, the possible complications. Having no idea what the outcome would be. Ups and downs. My thoughts are with you, I just hope that... [ more ]
Mysticobra Sorry to hear that. I don't know what to say. It sucks I guess. I was in 11 days and that was a successful removal. Surgeries are terrible. I never had a major one until I was 58. 3 in succession. I was mentally at a point where I gave up but my body wouldn't let me. Glad it didn't but it went through the worst hel I have ever been through. I hope it all works out for you. Richard. [ more ]
lablover Wow, you sure have been through the wringer. Sending get well wishes to you.. [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
Colostomy bag after surgery tip
K KC23
Lambiepie Winterberry, your tips are fantastic. KC23, I might add that keeping, in your basket of supplies, a little bottle of scented lotion. I like to put a little near/on the opening of my bag as added insurance. My husband says he never smells anything offensive coming from me (the filters on the bags are pretty useless and the only time I think they're working are the times my dog is near me and letting loose ;-)....) I also clean out my bag with water at home. However, if you're away from home... [ more ]
Winterberry Hi, KC23. When my external bag felt a bit messy but the wafer and flange were still clean and I did not need to change the entire appliance, I would fill a small plastic bottle with warm water. Open the bottom of the bag (un-clip it or un-velcro it), hold the lip carefully facing up (aimed at the ceiling) and pour water slowly into the bag. Make sure you hold the lip low, *no higher* than your stoma because you don't want the messy water to tip into your stoma. Keep the lip lower than your... [ more ]
Mysticobra I've had mine over a year now. I have a bottle of water I refill out of the faucet I use to rinse. Sometimes it's too thick and oozes so I just rinse it out and wipe the outside and open it and wipe the inside and velcro it back up. Doing it this way keeps it just water and not have poop to smear all over. Just easier for me. Two days! You'll figure out what's the best way to do it for you. Good luck. Richard . [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Total colectomy pain management
K KC23
Winterberry Hi, KC23. I was sent home with a prescription for Dilaudid. I didn't use it. I used Tylenol Extra Strength. The most pain I had was in my abdominals when trying to get out of bed. I needed help and someone would have to come lend me their arm and pull me up. Your abdominal muscles have been cut and now trying to mend itself and that will hurt, no getting around that. If no one around I would do as they taught me in hospital: move gently to the side of the bed, roll slowly onto your side, and... [ more ]
Jaypea With my colectomy I was on Dilaudid (hydromorphone) at home for about a week. I slowly weaned off using Tylenol extra strength in between doses of Dilaudid. The more you can walk and the more active you are the easier it is. If you absolutely cannot walk you must get out of bed at least once an hour and do lots of deep breathing. I had my j-pouch surgery about 17 months after my colectomy. It was a walk in the park regarding pain management. I had an epidural for about 3 days. Was up walking... [ more ]
Jeffsmom KC, y son was the same age when he had his colecotomy. He is also Aspergers. With sensory integration issues. He was in severe pain for weeks. But that was 2 and a half years ago and they were a little more free with what they could prescribe for pain. Today, it's a lot more difficult. But if you are in pain, you need to let them know. Just because you can walk doesn't mean you are pain free. Do not let them take the pump away if you,are not ready. I'm going to assume your folks are with... [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Total colectomy, help.
K KC23
Jeffsmom Hi KC, welcome. I'm the mom. My son was 23 when he had his colecotomy. Such a difficult surgery especially on someone so young. I feel your anxiety! My son was so happy when that darn catheter came out! He felt it hurt more while it was in. The worst part for him was dealing with the Ostomy. He hated it and refused to have anything to do with it. But he got through it and had his takedown three months later. Keep ahead of the pain is my best advice. Good luck �� dianne [ more ]
Mysticobra Minimal discomfort. But. . . . The longer it's in the more discomfort . It wasn't as bad or near as bad as I thought it would be. I even had one put in while awake but the nurse must have done it alot. No discomfort at all. Richard . [ more ]
CTB23 Sorry, not male, but my husband went through this during a different procedure and didn't seem to have any reaction that I can recall. I recently had a Cystoscopy, for bladder issues, and that was definitely more painful. They numbed the area with lidocaine, but still felt it. Glad when it was over. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
IBS/IPS symptoms
D Dylan 2016
sudie I agree with Claire I have been under the care of a dietician who deals with FODMAP with great results my first dietician did not specialise in FODMAP so found her a waist of time the Monash link is a great help been doing well the last two years [ more ]
claire Perhaps worth looking into Monash university 'low fodmap diet' before trying antibiotics (which can often precipitate IBS and carry serious potential side effects) and a good probiotic. http://www.med.monash.edu/cecs/gastro/fodmap/ [ more ]
Jan Dollar Have you tried a course of antibiotics to treat possible bacterial overgrowth? Seems like worth a try. Jan [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
The best Los Ángeles J Pouch Surgeon?
S SocalDan
Brad1 I highly recommend Dr Fleshner at Cedars-Sinai. He did my j-pouch surgeries this past May and July. [ more ]
smstarcrystal Fleshner at Cedars-Sinai in Beverly Hills [ more ]
CeeeeCeeee Dr. Daniel Ng in Newport Beach did my surgery. He is a gifted surgeon and a very caring person. I see him at least once a year for follow up. Had my surgery in 2001. I had/have the same insurance you have. Good idea to switch to a PPO. More choices! [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
New Pouch
R RickM
Winterberry Hi, Kara. How long have you been taking NOW super enzymes? How long until you noticed a difference? [ more ]
Winterberry Hi, RickM. I decided to try a digestive enzyme because I sometimes experience a gurgling, noisy stomach. Undigested food can be painful for my pouch to push out, as are loose stools, and gas can make painful spasms. On that thread a member, Since1991, posted a photo of their NOW brand super enzyme that helped them, and their generic probiotic S. Boulardi, which is good when on a course of antibiotic, like Cipro or Flagyl. I know enzymes help break down food, especially carbs - the cause of... [ more ]
RickM What moved you to try the super enzymes? Would welcome hearing from you as to the result of taking, whether you noticed improvement. Spoke with the folks at Dannon. I can't get here what you get in Canada. So, bad on us. I think when presented with homemade coffee cake, the indulgence is understandable. Finally, while my initial comment was made while everything seemed bleak and dark with little improvement, all of a sudden things got better. Far fewer trips to the WC, less butt leakage. [ more ]
See all 12 replies...
J-Pouch ForumsHelp! Need advice now!
J pouch removal surgeon recommendation
Z Zeninu4
Zeninu4 Thanks so much for the advice. I will check them out. It is a difficult decision to go through another surgery when I might have some of the same issues, like obstructions, and the dietary restrictions, possible pain. Plus, it sounds like a potentially complicated surgery. I would like to have a consult with someone who is an expert, so will research the ones recommended. [ more ]
BillV Although I cannot make a recommendation for a surgeon at Cleveland Clinic, they do have a fine reputation for dealing with pouch problems. You may wish to have them do an evaluation of your pouch before proceeding with its removal. Perhaps they can recommend something that would avoid removal and give you the quality of life you desire. If not, you would have a second opinion supporting removal. If you should decide to proceed with removal of your j pouch, you may want to research two... [ more ]
Jeffsmom I would suggest Dr Remzi but he moved to NYU in NY city. He is really the best there is [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
diet
K kemp
skn69 I've had a kpouch for 37ys and have found that diet varies according to season, exhaustion, health issues (flu, gastro, colds...), outside temperatures and my stress level. I eat according to season and find that fresh, ripe, seasonal foods digest better than unripened fruits and veggies. I like a hand blender to help me to deal with too much fiber and love soups and stews when I am in the mood for something rich and satisfying. I do not have a 'diet' but a lifestyle choice. I digest things... [ more ]
Jan Dollar Gee, I don't know. I drink coffee and eat a varied diet. I never noticed any real difference in function with diet. But, again, I am OK with some diarrhea. Better than having my j-pouch rule my life. For me, serious diarrhea always means pouchitis. Jan [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Pain in rectum 2 years post J pouch surgery
Shelley HShelley H
Txgal58 There is a condition called tenesmus that has symptoms similar to what you describe. It's basically a spasm of the rectum or rectal area. I've had it a few times; it's quite painful. There is medication for it. Look it up and see if it may be what you're experiencing. [ more ]
Scott F My apologies- I forgot you had a colonic J-pouch. Psyllium might help regulate the consistency, as long as you're drinking enough water. Good luck! [ more ]
Shelley H Thanks so much for the reply. My understanding is I still have part of my colon. The cancer was in the rectum & after initially planning to take all the colon because I have a gene in my family making us high risk for bowel cancer my gene testing was completed just before surgery and I did not have the faulty gene. So they only took part of the colon so I could have better control. Anyway your suggestion about the pouch irrigation is similar to what I was thinking but the surgeon... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
prostate biopsy
blazeblaze
blaze After meeting with my doctor this morning he decided to do the same procedure you are referring too in the very near future. I was relieved that he will be doing the same procedure as you Ray. He had never performed a prostate biopsy on someone with a j-porch. Thanks for the advice from you and Jan. Blaze [ more ]
bcirray I have a BCIR, so a biopsy was done via transperineal. A in office procedure done with patient asleep. Some blood in urine as a side effect for a couple of days. Ray [ more ]
Jan Dollar I think if you do a search there are a number of members who have had prostate biopsies. It is safe, as a very small needle is used. Jan [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
hysterectomy
P pammieskrh
Jan Dollar Duck, unfortunately a hysterectomy for endometriosis is very different from a simple hysterectomy. While anyone with prior pelvic surgery will have potential issues with adhesions to other pelvic organs, endometriosis ups the ante many times. This is because you not only have the adhesions from prior surgery, you have the arduous task of removing endometrial lining that has entered the pelvic and abdominal cavity, and adhering to your intestines, bladder, abdominal walls, etc.. This tissue... [ more ]
duck11 I'm in the same boat as you so do let me know how things work out. My gyno has been trying everything possible to avoid surgery for endometriosis but it seems now this is the only option. He made it sound very risky and that a bowel surgeon would be needed in the room too, so I'm glad to hear these positive stories. Please update here how it goes for you! [ more ]
CeeeeCeeee I had an open hysterectomy a few years ago and it was a simple recovery for me! My surgeon went through the scar from my proctoclectomy and it healed easily. My J-pouch was no worse for wear! Best wishes! [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Post partial blockage question
Y yellafella37
Kara Fred Christine- thank you for your post. When I had my J-Pouch, Dr. Shen was the doctor to see. He is wonderful and I -like you- recommend him for any J-Poucher. Unfortunately my J-Pouch was failing, so I opted for a K-Pouch and I love it. I also appreciate the advice on a FODMAP diet. Although I have been lucky enough (thus far) to not suffer from obstructions or pouchitis, I keep the FODMAP in the back of my mind. Good to know it helped you. All the best-Kara [ more ]
christine m I've been having partial obstructions a few times a year for about 3 years. Had my surgeries in 1995/1996. I went to see Dr. Bo Shen at the Cleveland Clinic in June. I will never go anywhere else again! He is a GI who specializes in the J-Pouch. Every patient I met there had the same system as I do, which is highly unusual, as you all know. He did a pouchoscopy and did go all the way through the stoma area. If they identify strictures, they can "balloon" them during the pouchoscopy. He is an... [ more ]
Joanm I have to ask yellafella37, how do you know that you are having a blockage or have had a few of them since your surgery since you have rarely been back to a doctor? I am just wondering exactly what your symptoms are. I am wondering if perhaps I might be having blockages occur but don't know. The pain and bloating starts shortly after eating and then the bloating becomes extremely localized to the area where my stoma was. It is almost as if I have a golf ball inside of me moving around up and... [ more ]
See all 12 replies...
J-Pouch ForumsHelp! Need advice now!
Bit of a pickle
P Pufferfish
Scott F VSL disappears in yogurt. I take it that way twice daily (for a total of four double-strength sachets). For me that dose works better than a lower dose. [ more ]
Pufferfish He he! I'm definitely going to take your advice there... especially as I've been asked to have a pouchoscopy now. I remember that before takedown and went (stupidly) drug free. Never again. Im hoping to get the pouchoscopy done in a couple of weeks. Could have been done sooner but as I have to travel up to London and it's my children's half term holidays coming up, I need to be around. Nowt worse than taking a 4yr old and 13yr old to the Big Smoke to spend the majority of the day at a... [ more ]
Winterberry Hi, Pufferfish. If pouchogram or any type of invasive / internal exam makes you nervous, anxious, and tense your muscles, it will hurt a lot. Tell them well in advance and ask if you can have a mild tranquilizer. When I have an endoscopy, I ask for a drug and they give it to me. They want you to have the test and anything helpful that will facilitate that, they will do. Sometimes they give me a tablet called Ativan to take with water 20 minutes before I get in the table. I am completely out... [ more ]
See all 14 replies...
J-Pouch ForumsHelp! Need advice now!
still struggling
J jegjpouch
ssami I think its just the normal post surgery thing i also felt the same way for 8 to 10 days after my final surgery and once i started having my meal properly slowly the frequency decreases. So i guess its just the normal thing so don't get panic just see for 2 to 3 more days and still you dont find improvement you can talk to ur doctor. [ more ]
Former Member A few hours after my takedown, I also developed the sensation to continually empty my pouch, no sooner had I'd finished, I need to go again, not quite the same urgency I'd experienced during a UC flare up but definately the need to get back and go again but there was nothing there to empty, although I was certain I wasn't emptying. There was no pain or discomfort, just the sensation to push and open my bowels, although, gradually it became more and more painful, excruciatingly; so much so, I... [ more ]
John Curtain I take a good bacteria capsule once a day. I think it helps with getting rid of gas which in turn helps with clearing out generally. Its available over the counter and I presume would have no adverse side effects so it may be well worth a try. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Unable to go, cramps, blood
M MRD
MRD Oops, pouch advancement is what he said. I was a little anesthetized still and couldn't remember the term. I'll look around and see if I can find threads about it on here. Thanks Scott! [ more ]
Scott F This is generally called "pouch advancement" surgery. There are a number of folks here who've had it, and I'll leave it to them to describe their experiences. FWIW, now that you have a proper diagnosis, perhaps medical treatment focused on your cuffitis might work well enough to avoid further surgery. [ more ]
Terradon ❤️
See all 11 replies...
J-Pouch ForumsHelp! Need advice now!
3RD SURGERY TO COMPLETE TAKE DOWN
D DEE2015
Winterberry Hello, Dee. Just as you did with your first surgeries, remember to get up as soon as possible and walk the hallways to get your system working. Drink as much water and fluids as you can. Your first time to the bathroom will be dark green bile until you are allowed to have solid food. After that it will probably be loose and fragmented until your system gets used to its new life in a couple of weeks or months. You will have gas pain as air moves through your bowels, and it will hurt, there is... [ more ]
Former Member If you've already had your bowel removed and a J pouch created, then the worse is over. [ more ]
DEE2015 MY WHOLE POST DIDN'T SHOW. I AM HAVING THE LAST SURGERY FOR THE TAKE DOWN. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Just had takedown, feels like UC again.
Becky18Becky18
Scott F Becky, you haven't mentioned pain, so I'm thinking anal fissures don't sound so likely. On day 5 it's hard to be sure of anything. Please don't strain if you can possibly help it, and know that it takes a while to adapt to your new plumbing. Gently experiment its what seems to work (and discover what doesn't). Good luck! [ more ]
Former Member No it's not normal. I experienced the very same; felt like I'd not completely emptied and had the weird sensation of wanting to push, like there was something up there. I eventually discovered that during my takedown surgery; what remains of the anal canal was dilated and such a procedure created tiny cracks/tears in the skin, commonly known as fissures. Which, I guess, is similar to a paper cut and during a bowel movement, the bile acid passing over a fissure is equivlent of lemon juice in... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Suddenly huge amount of blood
E ElSur
Jan Dollar Upper GI isdues are extremely common. Gastritis, ulcers, you name it. You can have bleeding without much in the way of other symptoms. But, if you don't consider an upper GI problem, you won't find one. Jan [ more ]
ElSur I'm not sure. Two of the three times I had this problem I definitely only got scoped in the pouch area. The other time I'm not exactly sure as I don't remember what kind of examination I got, but if I had to guess I'd say it's been pouch only as well. So yeah, upper GI bleeding can't be ruled out I guess, although I have no idea why there should be any kind of problem that can cause this symptoms. [ more ]
Jan Dollar Were you just scoped in your j-pouch, or upper GI too? With the black stool and bright red bleeding, I would be suspicious of an upper GI bleed. Sometimes we assume everything is the j-pouch and ignore other possibilities. Jan [ more ]
See all 13 replies...
J-Pouch ForumsHelp! Need advice now!
what can possibly prolapse from anus?
L Ljz
Scott F Good luck, LZJ! Time seems to be helping, which is excellent. [ more ]
Ljz A full prolapse was not seen on the Defography test, but it was mostly done in horizontal, not squatting position. I do not feel test was done correctly, but surgeon was certain after viewing pics that it was not a full prolapse. Said nothing he could do for me. Couple weeks later I had scope with new surgeon, already had consult scheduled with him, expecting full prolapse and he was surgeon I was referred to for pouch redo. This surgeon also saw film and didn't think full prolapse but found... [ more ]
CeeeeCeeee An internal polyp????? Just a guess. Your surgeon will tell you for sure! Best wishes. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Argon plasma coagulation of ulceration???
H hattie
Jan Dollar I concur with Scott. But, it is possible to have ulcers that are not responding to other treatments, and coagulation might work. Still, you want to proceed only if it makes sense for you. Particularly when you have conflicting expert opinions, it makes sense to step back and seriously consider your options. Is plasma coagulation dangerous for you? I doubt it, but if your surgeon is not convinced you need it, I can understand your hesitation. One thing though, occult blood loss (loss that is... [ more ]
Scott F If an ulcer is actively bleeding it may be necessary to stop that bleeding. That's not what you're describing, though. Whether your anemia is a result of bleeding from these ulcers is less important than what's causing the ulcers, and how it's being treated. If that's not addressed, then it doesn't matter whether you laser this batch, since more will form. is this pouchitis? Cuffitis? Crohn's? There are treatments for each of these. When the treatment is effective then the ulcers will heal. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Need advice about surgery. Please help!
J JS2016
*Zoe** Hi There, I am sorry to hear that you are not feeling well. I know how you must feel as I also went through a very rough time with my UC. I had surgery in 2014. It was emergency surgery as my bowel perforated. I waiting 12 months and then decided that J Pouch surgery was for me. One thing I would mention without trying to scare you is that the surgery is pretty big and does come with some complications. Hopefully you will be lucky enough if you decide to go ahead not to have any problems. [ more ]
CTB23 I had my first surgery about 7 mos. after being diagnosed with Ulcerative Colitis (follow up colonoscopy showed moderate to severe pan-colitis with dysphasia). During the months prior to surgery, I had 3 hospitalizations, blood transfusions, TPN, 3 weeks in rehab, tried several meds. Including Remicade, didn't work, had shingles and a skin condition called Erythema Nodosum (less than 5% of those with UC get it), unable to dress myself or walk due to severity of swelling in legs and pain. [ more ]
A2ndChance My husband struggled with UC for 2 years before his first surgery, which removed the colon and connected the small intestine to the rectum. It wasn't an answer for him with 6-8 bm/day, plus several at night. He found an alternative to jPouch, the BCIR (Barnett Continent Intestinal Reservoir.). It has given him his freedom from bathrooms and a new life. Everyone's body responds differently to surgery, so it may not be the answer for you. I strongly advise you learn all you can about your... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Fistula query
D Deedeeh
Deedeeh Hi Alisha thank you so much for your reply. i really appreciate it. i am sorry to hear that you have had so many problems!!! it can be a tough road. I have a jpouch and was diagnosed first with crohns and then uc so i went ahead with the jpouch about 4 years ago. my only problem to date has been frequency and watery stools like yourself. I did have an anal dilitation a couple of months ago as I had a stricture and the frequency has definitely reduced. i am now only getting up 2-3 times a... [ more ]
Alisha I'm definitely not an expert, but I have had several (4-5) fistulae since 2006. Mine have all been confined to my perianal area, with at least one infiltrating my vagina. Personally, my fistulae always started with an abscess that I could feel that was really tender & painful, swollen & kinda hot to the touch & I would run low-grade fevers; when I finally looked at it with a mirror, it looked almost like an inflamed cyst. However, I never had an actual fistula form on its own. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Internal Hemorroids - soooo painful!
SallyStewSallyStew
Scott F Anal fissures are more notable for pain than bleeding. [ more ]
SallyStew Thanks Scott F. I am straining a little. Never had an anal fissure, but was wondering if that could be it. I'll read up on it. . . could there be a fissure without the presence of blood? [ more ]
Scott F Perhaps you've developed an anal fissure? In either case, are you straining on the toilet? Stool consistency becomes especially important when either hemorrhoids or anal fissures are involved. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Spasms with urgency
John95John95
Scott F Dunn, if it's pouchitis then the Cipro will probably work. If it doesn't then the next step might be to reexamine whether it's really pouchitis. There are other treatments for pouchitis, best used when the diagnosis is reasonably certain. [ more ]
shaney Marystrawberry, Both of my Docs, GI and Surgeon are tied to an Internet program that allows me to ask them questions, kinda like email and they respond within a day. What I am saying is I would ask them both as I Really trust them both. My Surgeon is a God to me sonIbwould probably lean on her. Sorry, I know this is no help. Good luck! [ more ]
shaney Dunninator,, that stinks! I've not taken either one yet so I can offer nothing. Sorry, wish I could. What symptoms have come back? [ more ]
See all 21 replies...
J-Pouch ForumsHelp! Need advice now!
Blockage
D.D.D.D.
skn69 DD, So sorry...Can you gently (very gently) drape your body over the ball (sort of like a melted cat?) frontwards and then backwards? You sort of kneel down with the ball in front of you and put your arms over it then roll gently forward until your tummy is draped over the ball...Then you just allow it to sort of hang over the ball...your hands can stabilize you in front of it and your feet stay on the ground behind it...then you rock forwards and backward and then side to side. You can do... [ more ]
Osama mady Zonda is a plastic tube they insert it through the nose until it reach the stomach, it's takes out the liquid from the stomach if u have a blockage [ more ]
D.D. Another partial blockage...I am trying the ball...and moving around as much as possible. The difficult part is trying to stay calm and focused [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
J pouch for crohns colitis
HazelTHazelT
HazelT I have been on most medications and do not do well with them; steroids just kill me, I felt quite unwell on biologics, and even on the low grade drug asacol I had a very bad allergic reaction on the high dose of it which is how I ended up in hospital and eventually having surgery. So I really am not relaxed about meds at all. I have a contact who has a son with UC who takes cannaboids to control his UC and is off all meds; wondering if that would be an option instead of thinking I need to... [ more ]
Scott F Hazel, I really recommend that you relax your objections to medications. I'm not suggesting you ignore serious side effects *that actually occur*, but you are likely to need medication to thrive. Doing everything you can with diet is perfectly reasonable, but assuming it will be sufficient is less reasonable. This applies whether or not you have a J-pouch: being willing to do all that's necessary to get well and stay well is often the only way to have any chance at all of being well. Asking... [ more ]
HazelT Thank you, I hate all the drugs for Crohns so maybe this wont be an option for me. Although I do plan on staying on scd diet and low dose naltrexone so maybe that might be enough. A bit apprehensive now I must say, would hate to go back to being sick again [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Vsl today? (day before pouchoscopy ?)
H hattie
Scott F Hattie, this won't make a huge difference either way. Missing a day of VSL is not a big deal, and taking it is okay, too, though you're about to flush it right out. I wouldn't take it late in the day, though. I'm sorry you're going through a full colonoscopy prep for a simple pouchoscopy. That's overkill, IMO. Perhaps you can ask your doctor before the procedure if a more modest prep would be okay next time, since there's no colon to flush. If so, you'll have to write it down for next time,... [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Cant f*****g move
C Clark_00
jls456 When I get that bad,Ilex and a few Norco's really help me a lot. Ilex works wonders,however the price has almost doubled in the last year. [ more ]
drone3 I had a nasty fissure 6 months ago. This is what helped me; 1. Pawpaw ointment (this is the best ointment i tried about 10 different varieties) 2. Nifidepine , this is much better than the other one that gives you headaches (i had to get it made up at the chemist) 3. Stop eating veges as they cause to much gas. Just go with protein (chicken, fish) and rice. [ more ]
Mysticobra I've been there. I know what your feeling. Something that doesn't go away day or night. It gets unbearable and will beat the strongest down to pulp. Never posted your way. But I'll be damned if I wasn't saying it in the bathroom! No painkiller can take it away. I hope you can solve you issue. Lots of good advice here. [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Opinions on specific surgeons at CC?
M MrsSchmidt
Ljz Mrs. Schmidt, By now I expect your husband had his surgery at CC! I expect he had great care, as most are very impressed with CC surgeons as well as the ostomy and other nurses who support you after surgery. I truly hope he had that experience and is recuperating comfortably. There is an adjustment period with each step, so be patient and ask specific questions here if needed to aide in his recovery. It's a long haul, but so many have had success and are now living with much better and... [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
UC-like, unstoppable, large amt diahrrea
SW Sharon W
skn69 Hi Sharon, I am so, so sorry...our guts have the worse timing ever. Firstly, I do not line up when there is an emergency situation, I scream at the top of my lungs if need be and rush to the 1st stall that opens up...(I just say, 'about to have a bad accident!!!' and ladies move out of the way or I go to the boy's room if there is no line-up...don't care, it is better than an accident!) Next, stress can cause diarrhea, so can strong emotions...you body does not differentiate between the good... [ more ]
Osama mady One week after my first surgery I went back to work at office - in the toilets my full ilostomy bag fall down to the floor and u could imagine what a mess was there on the floor - I had to clean the floor before any body comes in the toilets - after that I go home changed my bag and went back to work - I should wait until the second surgery to go back to work - avoiding the question of the other works about the bag that I have u under my shirt was very hard - [ more ]
Former Member I too am sorry to hear what you've experienced and I've no need to imagine it either or how you're feeling. I experienced similar and at the time, I still had a colostomy bag. For just short of 24 hours, I had to constantly empty the the bag, it will fill again before I was able to leave the bathroom. Once the bout of diarrhoea began, the bags would fill to the point of bursting within minutes; looking like a mini airbag attached to my stomach. Test confirmed it was some kind of food... [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
IBS or Adhesions?
RodshunnyRodshunny
skn69 Hi Susan, So sorry to hear that you are having so much trouble...I was sort of hoping that 'silence was golden' and that you were happy and healthy and too busy living your life to log on... I have a couple of thought...first, yes, adhesions could be the culprit especially if you feel the obstructions/blockages occurring in the same spot each time. (sometimes you can feel the exact site, sometimes not). The problem with adhesions is that they are very difficult to see on any sort of x-ray or... [ more ]
Scott F Susan, you could easily have multiple things going on. IBS (and IPS) doesn't cause obstructions. Neither does diet, in general. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Recent takedown nightmare. Pls help :(
*Zoe***Zoe**
Jpouch Thanks for the update Zoe! I wish all the best to you! [ more ]
Ljz Zoe, I'm in US, Chicago but my surgeon was at Cleveland Clinic until recently. Get strong! I do believe that temp ileo will allow you to do that! Take it slow and wishing you good health and hopefully successful pouch in the future! laurie [ more ]
*Zoe** Hi All, thanks for those that have posted recently. I thought I would let you all know that I'm back with a temp ileo, I couldn't go on like I was any more. The surgery was just over two weeks ago and I'm starting to feel human again. I'm still down that things didn't work out the way I hoped but family and friends have helped me through this. crazy1 - thanks so much for the tips on diet. I am finding it easier to eat now and will takes this on board. laurie - thanks for your post. I hope... [ more ]
See all 19 replies...
J-Pouch ForumsHelp! Need advice now!
Ileus following Joint replacement surgery
Grandma JGrandma J
Grandma J You would think with all the advances in medicine, that there should be something besides waiting it out that could avoid this! [ more ]
skn69 Any surgery runs the risk of causing post op ileus, longer surgeries make the risk higher and post-op narcotics can make it worse. I had never suffered from them until 2008 (about my 30th surgery)...suddenly I was that person, the one who throws up her guts for 3 days post op and keeps walking the hallways like a robot. There is nothing that they can do to prevent them and nothing that you can do once they start other than riding them out and eventually getting the dreaded NG tube put in. [ more ]
Grandma J Please do talk to your surgeon and GI. It doesn't happen often, but apparently there is a greater risk if your bowel is compromised. (j-pouch) After joint replacement (especially for knees), oxycontin and oxycodone are used for pain. I took one oxycontin and my bowel shut down for days. The Colace is good for constipation, but as far as I know, not for ileus. I have had my j-pouch for 12 years and I still love it. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Trauma post blockage
R robbon
drone3 Hi Robbon, i have experienced something similar post-blockage that my system and flow is not regular. It usually takes me 1-2 weeks to get things more regular but the most important thing is to try prevent any more blockages. Advice i can give is micro manage your vegetable intake like the terminator. I can eat plenty of protein and rice with no issues but when it comes to veges/nuts/seeds/peels they are usually the ones that cause the blockage. I only eat baby spinach and tomato finely... [ more ]
Winterberry Hello, Robbon. I don't have an answer for you, but just wondered how you are doing now. I hope the pain while digesting has gone. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Diarrhea every three month
Osama madyOsama mady
skn69 Mady, I have a different idea and possibly off-the-wall but worth checking into...Your hormones. Not all periods are created equally and your hormones do not just fluctuate monthly but seasonally too. And they have a very strong influence on your pouch. The every 3 months leads me to believe that this could be the case. Does the problem occur during either ovulation or your periods? Is there a correlation? Are you suffering from lower back pain at the same time? I would get 3-4 bad... [ more ]
Jan Dollar Sounds like recurrent pouchitis to me. The longer you have your pouch, the more likely you are to have pouchitis. My chronic pouchitis started out as recurrent bouts, and over time became more chronic. Now, I never travel without bringing antibiotics with me, particularly if out of the country. Jan [ more ]
Osama mady i take Cipro and Flagyl every time i have the bout , its take usually 2 to 3 days to get out of it , but couple of time it took one week and two weeks , the blood test at hospital when i have the bout shows that i have inflammation , but after one day the blood test is normal. i tried all kind of diet , i don't eat meat , i try to eat cooked food when i can. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Possible food poisoning...
mamaswansmamaswans
Jan Dollar Norovirus can be caught through contaminated food, contaminated surfaces, or with contact with contagious people. It is highly contagious (it is the GI bug that sweeps through cruise ships). Low grade fever is pretty common with it. You will be contagious for a couple of days after your symptoms resolve. The good news is that it is a fast moving virus, and usually resolves within 2-4 days. I just recovered from a bout of this a week ago. I came close to needing to go to the ER for fluids. [ more ]
skn69 Like Barrister said, not much to do but stay hydrated, try to replace those mineral salts that you have lost by sipping something replenishing (coconut water or gatorade or pedialyte) and if anything happens that starts to worry you beyond the 'normal' running from both ends then head to the hospital...fast. Abnormal includes fainting, severe headache, sharp pains so strong that you are doubled over, chills, a fever above 99°, vomiting strong and uncontrollable to the point of feeling like... [ more ]
CTBarrister If it's coming out of both ends that is a good guess. If it gets any worse go to the ER. Try to stay hydrated if you can. I would eat in for a while. Food poisoning and GI disturbances like this can throw you for a loop for a week or more. Good luck. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
stop loose stools
MIKEEYMIKEEY
MIKEEY Thank you so much [ more ]
Ljz I have found Walmucil (Walgreens brand- does not have Aspartane in it) helps me greatly keeping stools from being liquid and bulks them up which reduces frequency. Also, without it 3x day with meals, my output is very acidic and causes serious butt burn. I'm 2.5 years out and do need to take Lomotil to slow things and Colestipol for acid. I also find I sometimes need more carbs to bulk things up though others have eliminated those for pouchitis/gas issues. Good luck! ljz [ more ]
MIKEEY Thank you [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Anyone have ulcers at Jpouch suture line ( with pictures)
J jeane
jeane Thank you Jan. So sorry about the norovirus and I sure hope you are feeling better now. Those sure are a lot of different biologics you have been on but glad you found a combination of meds that is working This bout of pouchitis is worst ever. I'm having multiple nighttime accidents and waking and in the bathroom almost every hour. . Lomotil is not helping. I have extreme gas which I have never really had before with ppouchitis nor frank IIncinrinence like I am experiencing. I will be... [ more ]
Jan Dollar I have been on Enbrel, Humira, Simponi, Cimzia, and now Remicade with azathioprine. Before the Remicade, the biologics were for enteropathic arthritis, not pouchitis. Up until about a year or so ago, pouchitis was just acute and intermittent. Over time, it became more chronic and I was on rotating antibiotics eventually in order to function. I had ulcers at the pouch anastomosis and the efferent limb and chronic cuffitis. The main part of the pouch was fine and there were no strictures. I... [ more ]
jeane Thanks Jan and Brewbirds, Do you mind if I ask what biologics you are taking and have they healed your ulcers and controlled the pouchitis? Have you ever tried to go off them to see what happens? The consensus, up until now, was that the stricture has been causing fecal stasis, hence chronic pouchitis in my case. Prior to this scope, I have shown consistent inflammation, but only a very small ulcer along my anastomosis and in the distal pouch which is why this scope and pics really upset me. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Loud intestinal sounds and AWFUL smelling gas
S shoflo
shoflo Thanks [ more ]
Jan Dollar Maybe it is just bacterial overgrowth. Antibiotics should help with this. Some people find probiotics helpful, but if it is very bad, antibiotics are needed. Jan [ more ]
shoflo That's the weird thing I can't pin it on diet. I don't drink coffee or any of that stuff due to being told about gas before colectomy. I been trying to do just water and bland foods for a few days now. [ more ]
See all 4 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.

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

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


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

Confidentiality

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

 

CCFA

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


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

 

Join Now

Already a member? Sign In

Online Now

Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×