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J-Pouch ForumsGeneral Discussion
Help if you can
N newpouch
newpouch Thank you so much! It's literally so relieving hearing other people's stories especially when they're close to my age, I'll be saving your email just in case- hope that's okay! thank you so much again [ more ]
Mhg26 Hey I read your story and I just wanted to write and say that my story was pretty similar and to keep your head up. I originally got sick with UC in March 2011 when I was 20 and in my sophomore year of college. I had my takedown on May 7th 2012, and although it can be challenging to get used to at first, it gets easier with time. I can pretty much eat what I want, within moderation of course. I also wanted to say that it didn't keep me from returning back to college, making new friends or... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Remicade-is my body reacting to the drug?
N Nikki9
Scott F Nikki- I honestly don't know if this could all be due to a drug reaction, but it sure might be. I think you need at least a theory about what's causing this before you get your next dose, and I'm concerned that the lab test may not actually answer the question. What has me a bit worried is that several of these symptoms sound like heart trouble. Have you had an EKG or cardiac assessment, to make sure that's okay? [ more ]
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J-Pouch ForumsGeneral Discussion
Diet
PS Phil S
Phil S Just Immodium and Pepto B. Going in for sigmoid tomorrow including for biopsies. Last few days the psyllium from Trader Joes really appears to help. I'm just hoping it's not IBD as my small intestine always show a little inflammation on every sigmoid. Thanks for asking. Hope you are doing well. [ more ]
PouchyTX Are you on any meds? Seeing a doctor? May be a bigger problem after a MONTH of loose stools [ more ]
Phil S Thanks for your responses. I'm going to buy more pickles today and possibly tomato juice. Just scared the tomato juice might exacerbate the small intestine. Had Pouchitis plenty of times. Always the usual response is Cypro and Flagyl. Seems to work though. Thanks again. [ more ]
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J-Pouch ForumsGeneral Discussion
How to stop the "burning butt" syndrome
DM Double M
PouchyTX I've never gone wrong with my simple method. - Butt wipe to thoroguhly clean - Small amount of TP or cotton pad (like you) to dry - A smidgen of diaper rash ointment Boom [ more ]
LT Calmoseptine is wonderful for this. I have used it for years. So soothing even to bleeding skin. I have started using uscented baby wipes after BM's and I hardly ever have a need for Calmoseptine. I have had my J pouch for 18 years. [ more ]
Double M I had not heard of ilex Protectant Paste, but after checking out their website, it sounds like a great product. It is actually marketed for ostomy sites and a J-pouch is kind of like a bag-less ostomy. Same aggressive liquids involved. I will be getting some to have on hand when things get a bit raw. iLex is petroleum jelly based so it reminded me of when I was using Bag Balm not long after I got my J-pouch. Bag Balm, unfortunately is almost pure petroleum jelly whereas iLex has quite a few... [ more ]
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J-Pouch ForumsGeneral Discussion
Experimental Pill
G GraceB
TE Marie I had c.diff with my colon and with my j-pouch. The treatment used for my c.diff was the same, the antibiotic Flagyl. I had to take 4-5 courses of it to get rid of my j-pouch infection. It was more difficult to treat with my pouch. I don't know what pill you are referring to. I do know that fecal transplants are very effective and if I ever get another infection I will use that treatment. A hospital close by has simplified the transplant process. They use a donor's fecal matter, that has... [ more ]
GraceB Scott no I don't have c-diff but I did read a post at one time where the person had j-pouch surgery and was diagnosed as having C-Diff. I just wanted to know if the pill is also effective if you have the pouch or is it just for people that have ulcerative colitis and still have there colon. Thanks Grace [ more ]
Scott F Grace, do you have C diff? The various microbiome treatments are generally variations of a fecal transplant. It can work quite well when antibiotics don't do the job. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Removal Surgery
F Fosty
AllyKat Thanks for sharing some positive. I'm less than a week out and feel awful. The pain not too bad but I still don't feel like eating, I'm super tired, no taste for anything, I just want to be normal and getting discouraged. I've been thru the mil with my pouch And want to feel good. I'm in my 60 so I guess I can't expect a speedy recovery like you younger gals but still..... [ more ]
Fosty vstRN - thanks for sharing you positive story with us. It helps to hear that things can go smoothly. I had an easy time mostly with my first 2 surgeries 11 yrs ago and was hoping for the same. For me I just want a better quality of life as my pouch only for the past year has not been functioning well. Hoping for a good outcome like you!! [ more ]
vstRN I think making the decision to actually go through with a permanent ileostomy was the hardest part. Like any surgery though, it wasn't fun. But it really was pretty uneventful. I was not on steroids and there was no issue at all with the wound healing (I know I am very lucky for this). I did have mucous drainage that lasted for a few weeks which I was told was completely normal. And no, sitting was not that uncomfortable. My bottom was certainly a bit tender for a few weeks but I could still... [ more ]
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J-Pouch ForumsPouchitis
Fecal Transplant
B Bowella
SarahXYZ Originally Posted by Bowella: Has anyone used and had success with fecal transplant for pouchitis yet. I have attempted to obtain FT from my doctors but they refuse - saying it cant help the pouch as there is not enough bowel left. I personally disagree with this view and cant understand why they wont try it. I just screened for a research study at UCSF - getting one fecal transplant and its effect on my chronic pouchitis over a year. It's experimental and getting the data, but I'm hopeful! [ more ]
AllyKat I did last month. I did it for 6 days. I could only hold it it for about a hour or so. I also felt awful! die off?, idk! that's why I stopped at 6. First I did a clean out with 3 weeks of xifacan. I used my son. He refused to pay to get tested! my GI wrote him a script. Not smart of me I know but I was desperate? Anyway, I've been following this up with the no carb! on sugar diet! whole goods, etc. Been doing good. I also drink a lot of homemade kefir and homemade yogurt. I think FEcal... [ more ]
Jan Dollar The primary use and approved application is for treatment of antibiotic resistant, chronic C. difficile infection. Everything else is off label use and experimental. So, if you can find someone to administer, it would not likely be covered by insurance. That said, AllyKat is using it as a last chance to get out of the chronic pouchitis cycle. Here is her profile and you can check her posts. http://j-pouch.org/eve/persona...profile&u=6281040921 Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal fissure- pain insane
MN marc nolan
Jan Dollar Yes. You should be able to mix them and apply at the same time. Jan [ more ]
marc nolan Thank you guys for responding, I appreciate it. Will Nifedipine be able to absorb through the Lidocaine ? I work each day now and get through it but I am pretty useless come 8pm at night trying to help my wife with the kids as pain becomes bad and I do not want to take pain killers as they only constipate me. I guess my biggest fear is that these fissures will never go away, do they ? Thank you [ more ]
Jan Dollar I should think you could use both the lidocaine and nifedipine together (I think I read articles where it was tested as a compounded combined cream). Using some barrier cream on top of that would be OK, since it would not prevent them from being absorbed. Have you asked your doctor these questions? If you have given this your best shot without relief, Botox injections are another option to consider. Oh, and don't apologize for complaining about a "minor" problem. Anal pain is probably one of... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Second Diversion - Scared Sh*tless, No Pun Intended
S See_Em_Dee
rachelraven I, too, am dealing with a fistula, a perianal one. As Jan said, yes: once that tract is there, it becomes part of you and your GI tract, and your body has no urgency to heal it, as it doesn't register a problem, once it epithelializes and becomes part of your bowel. Sad truth. Also, if it's an "IBD" fistula, a fistulectomy can be worse: healing rates are terrible on those, related to inflammation. With a J pouch, there's another strike: cutting through sphincters that have already taken a... [ more ]
See_Em_Dee Thank you. I am diverting with the intent to reverse again. I want to know if anyone's done this more than once. [ more ]
Jan Dollar I am so sorry you are dealing with this. I would love to tell you that this fistula would likely "just heal" so you can move on, but that would be probably be giving you more of a fairy tale. Diversion may not heal this thing, but it could improve your quality of life enough so that you could time to figure out your next step and start enjoying life again. Right now it seems like you are circling the drain, and you need to get out of that loop. Good luck! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
How is this possible!
JeffsmomJeffsmom
TE Marie Poucho could tell you. I don't think Dr. Shen has had a lot of experience with it either. For all we know these two GI's brain stormed together about it. We don't hear about the social side of these doctors. They aren't encapsulated at different hospitals They go to medical conditions and am sure speak at some of them. I watched a good presentation on U-Tube by the CC surgeon, I forget his name - might be Remzi, he is mentioned on here a lot. [ more ]
Jeffsmom Marie my surgeon in NJ wanted to try glue also but he really doesn't have the experience. It would have been a first time for him. He had a couple of good ideas that I think Cleveland may already be doing. I know we are going to end up there, but the transplant team in NY wants us to stay there. With Jeffrey's latest diagnosis, it complicates everything that much more. [ more ]
TE Marie Dr. Shen is pioneering new approaches, like trying to fix pouchomarx's leak with a glue. That's what I was getting to. Some of us, like pouchomarx, are braver than I am! Some times we don't have a choice but be brave. I remember someone telling me that if she had to get an ileostomy that visiting nurses would have to come and change it for her all the time. She was making one of those faces like "disgusting". I didn't bother telling her about emptying it 5 times a day. [ more ]
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J-Pouch ForumsGeneral Discussion
9 weeks post op
Mdz122Mdz122
Mdz122 So I had a great night last night, I only had 2 BM's and both were with control. I agree with both you guys, I had some sort of bug or infection that passed through. It was rough, I'm happy that it seems to be over. Thank you very much for your help and suggestions guys. I'm realizing for this all to be better you really need to put the effort in. I guess I was hoping I would magically be normal again and not have to try. [ more ]
Scott F I'd think the GI bug more likely than pouchitis, just because bugs are common and three days isn't long enough to tell them apart. If you do see a primary care doc you'll need to be patient, since he/she will probably never have heard of pouchitis. I didn't find that Benefiber worked well for me. I've had better success with psyllium (Metamucil, Konsyl). [ more ]
Jan Dollar Sounds like a plan. Your primary may be hesitant to treat, but if you bring in an article about pouchitis showing him the symptoms, treatment, and likely diagnosis, he might prescribe based on symptoms. You could print up the article linked in the "sticky" post at the top of the pouchitis forum, or just print an abstract from PubMed. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Facing J-Pouch Surgery
K KonaBlue561
KonaBlue561 This is what the current shape of my colon looks like. There is active UC due to the throbbing, occasional mucus and occasional light bleeding that I have seen. The shape of my colon has no bearing on the control issues as the surgeon explained to me yesterday...I though it contributed to it but it's nerve/muscle issues causing it from my prior surgery. I've never had control issues like this at all prior to the surgery. The surgeon did mention he would leave about a half inch at the base of... [ more ]
ElmerFudd Kona, you need to get a flex sig scope and have them look at the rectum and tell you if there is any active UC in the rectum. If there is, that could explain the urgency issues more than things being a "straight shot" to your rectum. With the colon you have left, I don't really understand how it's a "straight shot" anyway - the whole transverse colon is there. Honestly, I can't remember with a colon & rectum whether watery stools in and of themselves created urgency, or if it was more... [ more ]
Scott F If you're having no control with an intact rectum I can see why your surgeon might be concerned. A J-pouch might give you back control, but it also might not. Perhaps anal manometry could be done to test how well your sphincter is working, since that's mostly what gives J-pouchers control. A K-Pouch exits the body on the lower abdomen, like a regular ileostomy, but instead of emptying into a bag, it stays closed until you insert a plastic tube (at your convenience) to empty the internal... [ more ]
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J-Pouch ForumsGeneral Discussion
Inflamatory of joints
BranchyBranchy
Jan Dollar Yes, this happens. And no, it may not go away. The temporary peripheral arthritis associated with UC usually has about six weeks of activity. Preventing your takedown is not the answer. The answer is treating this inflammatory arthritis. Ask for a referral to a rheumatologist. I have been on biologics for about 10 years and am doing better. I had my colectomy in 1995. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Issues at night
K kubrider
kubrider Thank you Boy's Mom. I do try and eat right, no junk and plenty of veggies with some fruit. I've always taken Metamucil and that helps to keep things together big time, I also take Lomotil throughout the day to slow things down but neither help during the night. And it's not like I sleep thru the night, I'm typically up every three to four hours. Ugh [ more ]
boy's mom My son had a lot of leaks intermittently. Fiber helped . He is on humira now and that seems to help too - thought it is hard to know for sure if that is what is making the difference. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
pouch and needing a possible hysterectomy due to scar tissue and ovarian cyst- insight please?
D DrewD Drew
Ames I had a hysterectomy 6weeks ago for abnormal bleeding while on tamoxifen (a drug used to treact my breast cancer ) They did find endometrial cancer so I Am glad it is out. I had the hysterectomy at the same hospital as my j pouch ( Cleveland Clinic) When I was told I would need a hysterectomy I contacted my j pouch surgeon who is no longer at Cleveland Clinic and he said that a hysterectomy would be no problem but I would need a colo rectal surgeon who does jpouch surgeries in the OR. There... [ more ]
UKSue I had a hysterectomy for cervical cancer three weeks ago and my pouch is fine. The pouch and uterus were adhered and my op took longer because of that- I also had a pouch surgeon present during surgery and they did a longitudinal abdominal incision so they could really see what they were doing- I have a 10 inch scar. Hysterectomy IS more complicated with a pouch, but my gynae surgeons were great, got my original pouch surgery notes and as I said haD a pouch surgeon present during the op to... [ more ]
TE Marie If possible maybe you can keep one ovary. I had a hysterectomy, when 40, and they only removed my uterus so I wouldn't be thrown into menopause. Years later they ran lab tests and my old ovaries had shut down. The only thing my ovaries could do for me was give me ovarian cancer - so I had my surgeon remove them along with my colon. The point I'm trying to make is to keep at least one ovary if possible. I had a much easier time with menopause because I still had them. Sorry if TMI. one of the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
having the reversal
Rae26Rae26
See_Em_Dee Originally Posted by jpouchmike: I notice you're from the Bronx. I had my surgeries in NY too. which hospital are you going to? I am so sorry... as you can see, it's been over a year since I last signed in. Anyway, I've been having my surgeries at Mt. Sinai. Where did you have yours? Have you been doing well? [ more ]
See_Em_Dee If you folks would be so kind as to read my posts in "Having Lots of Trouble," I'd really appreciate it. I don't want to scare this person having their takedown (though, I'm sure they've had it by now), but I'm a little over 3 months post-op and struggling quite a bit. I do not wish I had my bag back at all, but I am feeling pretty discouraged about my outcome. Any and all advice would be great. One person replied to me with useful tips that I'm already trying, but I'd love to read others'... [ more ]
Jaypea I had my j-pouch surgery and take down in November of last year. For the first 2 weeks after the surgery I experienced some complications and wished that I had my ostomy back. My bowels stopped working and I was on TPN with a PICC line and an NG tube. Once my bowels woke up I was a very happy camper indeed. I have not looked back. I LOVE my j-pouch. I am back working full-time as an RN in paediatric critical care and living life to the fullest. My bottom was extremely sore and burning for... [ more ]
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J-Pouch ForumsGeneral Discussion
Well the ostomy won
AllyKatAllyKat
boy's mom I'm sorry AllyKat. What a surprise there were no adhesions. I am hoping you get comfortable soon. I know this is a huge adjustment. Wishing you all best. [ more ]
Jeffsmom Ally, i don't really remember, but I do know he continued to lose weight for another month. He slept a lot and was still on heavy pain medication for at least 3 weeks. Id say he experienced what you are for at least 3-4 weeks. When we went to Disney in May, he was still tired, so we really paced ourselves based on what he needed. If you need the drugs, keep taking them. Don't worry about being addicted. Jeff had been on 60mg of Dilauded for almost 6 months! Among other things. We were lucky,... [ more ]
AllyKat Jeffs Mom how long did it take Jeffery to start to feel better. 5 days I still feel sick, tired, hurt, no appetite, blah, anixious, etc. My intestines hurt especially when it comes out. I still have the tube in holding it open. IM scared when they pull it it will stop working. The first time around I had a lot of stool this time I feel I'm not producing but everyone says I'm fine. Today, it just all hitting me. Had to take a Ativan. Need to mentally get my act together after all this. [ more ]
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J-Pouch ForumsGeneral Discussion
Stress and the pouch
Mema 1Mema 1
TE Marie If the canassa helped than try it again. It is my understanding that it helps pouchitis as well - although I'm not sure how much as most pouchitis is treated with antibiotics. I hope your surgeon gets back to you soon. [ more ]
Mema 1 I don't use pain meds at all. Last night, though, my butt burn and stomach ache was so bad that I could not sleep. I used a Canasa suppository that I found and finally was able to doze off. I'm wondering now if part of it is cuffitis. I just don't know and am getting myself so stressed I don't know what to do. I am going to send an email to my surgeon tomorrow to see if he might have a clue as to what's going on. This is just endless and draining me completely. Thanks for your support. [ more ]
TE Marie Do you have any prescription pain medication? When my pain was so bad in February my PCP, who was my pain management doc, gave me permission to double the dose as needed until I got through that Mayo trip. I didn't need to use it very much. It was reassuring to know I could use it if needed. That reduced some of the stress. She also gave me a pain shot that helped. I don't know what you can do as I only know what works in my case. I hope you find some relief soon. We've had our new plumbing... [ more ]
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J-Pouch ForumsHelp! Need advice now!
vaginal pain with j-pouch?
T thot
thot Originally Posted by thumprhare: I am with Jan, and think you totally need to see your doc. What stage was your cancer? A CT could certainly provide reassurance against badness. yes, of course! just wondering if anyone else might have any ideas. [ more ]
thumprhare I am with Jan, and think you totally need to see your doc. What stage was your cancer? A CT could certainly provide reassurance against badness. [ more ]
thot Originally Posted by Jan Dollar: What comes to mind is first adhesions preventing normal movement of your uterus. The other thing is a possible abscess and/or sinus forming from your disconnected pouch. It could even be a fistula. Often they are not visible on vaginal exam. Have you been having any increased vaginal discharge or infection, or air expelled vaginally? That would indicate a fistula. if this keeps up ask about a CT scan. Jan thanks for the reply! no more vaginal discharge or... [ more ]
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J-Pouch ForumsGeneral Discussion
Nutritionist
L LisaT
Scott F Just to clarify, Lisa, do you mean IBS (Irritable Bowel Syndrome) or IBD (Inflammatory Bowel Disease)? I don't have answers for you, but I thought it might be worth verifying the question. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can't stop leaking from my ostomy bag
CM Cheryl Minn
Cheryl Minn Thanks Megan B and everyone else for your advice, I did find the right product and no more leaking! It was actually the very first product that my ostomy nurse ordered for me with deep convection, I am so happy, my skin is good and I got my life back! [ more ]
MeganB Hi, Cheryl: Do not despair!! I had a horrible time with my ileostomy and feel that if I managed, anyone can. Unfortunately, it seems like a trial and error game. You need to find out what works for you. Are you still in the hospital? I was in the hospital for 2 weeks after my initial colectomy and j pouch construction. I had a wonderful ostomy nurse but no one could get my bag to stop leaking! Eventually, I tried it myself. It was the longest seal I got. After I was released I had on going... [ more ]
AllyKat Did you remove your pouch or just divert it? Besides this problem are you feeling better? [ more ]
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J-Pouch ForumsHelp! Need advice now!
pelvic problem
mariaemariae
mariae I have had many bouts of pouchitis tried antibiotics and VSL which of no great help but been have really bad pain in back for quite a long time I have also renal stones and stomach polyps but pain is not from this ct scan has confirmed its due to pelvis stuck to small bowel to see my consultant in a few weeks to discuss having to defunction the pouch not as sure as what to do and yes it seems its from adhesions. [ more ]
thumprhare Did they say it was scarring? I have heard of that but not specifically what you have. Are they planning to go and remove the adhesions or wait it out? [ more ]
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J-Pouch ForumsHelp! Need advice now!
How long was recovery
AllyKatAllyKat
AllyKat My doctor didn't feel my body was up to a big surgery at this time. Omg I hope I don't have to do this again. [ more ]
Fosty Ally- why didn't they remove pouch at the same time? I'm your age as well and having permanent Illeo plus pouch removal together. I have the best surgeon and hospital in Canada and she only does it this way in case pouch causes problems when left in. I hope all will be well with you soon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
what's wrong with me? leaking, pains, exhausted...
B Bee26840
Scott F I'm sorry you're feeling so crappy, Bee. Four days is short enough that it could be all kinds of things. My first guess would be a garden-variety GI bug, and it may get better on its own before your appointment. Stay hydrated to avoid the ED, if possible. It would be unusual, I think, for stress and sleep disruption to do what you're describing, but they don't help, of course. If it persists longer than a week or so then other causes start to seem more likely to me (e.g. C. diff). Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Gastro-enteritis and dehydratation
F Francois
Former Member Glucose isn't readily available on UK supermarket shelves either; only Health Food stores and the UK equivlent of Drug Stores [ more ]
Jan Dollar Glucose is a sugar, but is absorbed directly into the bloodstream (does not need to be digested like sucrose). So, it is far less likely to cause extra diarrhea, like "sports" drnks can. However, glucose (dextrose) is not found in most American supermarket shelves. But, you can find it in specialty stores and online. Jan [ more ]
Former Member I'll be surprised if the Oral Rehydration Solution recommended by St Marks Hospital would be unsafe. http://www.stmarkshospital.org...matory-bowel-disease The solution actually contains Glucose rather than Sugar, whether that makes a difference. http://www.stmarksfoundation.o...y%20Advice%20HOS.pdf [ more ]
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J-Pouch ForumsOstomy & Skin
Pouch Removal Prep
F Fosty
PoucherInTO Heya Fosty, I'm not sure if you saw my reply to your PM - look up at the top of your screen to where it says "dialogs" and you should see my email in there [ more ]
Fosty Lambiepie thanks so much! I really needed to hear that. I've totally had enough of my pouch! [ more ]
Lambiepie Fosty, good luck with your pouch removal. I had mine removed in January. I can honestly say that my life has been better in the last six months than it was during the four years with my jpouch. Keep your eye on the long-term and best of luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Prepopik for bowl prep pouchoscopy??
I ian337
Shainy I'm having a pouchoscopy next week and I've been told no preparations needed. I think they may give me an enema just before the procedure [ more ]
Jan Dollar Yeah. My GI has been pestered enough that he now just just writes this prep order: "Patient knows what to do." Your mag citrate prep is essentially the same as half of the other stuff. I used to take the mag citrate but haven't for years. Didn't hurt me, but didn't make much difference either way. Jan [ more ]
ian337 Thanks all, Lesson learned... triple check with the office and double check with the Doctor. Now it's just Clear liquid fast dinner 10 oz magnesium citrate Nothing after midnight That became much easier. I find they generally get it wrong the first time and I have to call and make sure. [ more ]
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J-Pouch ForumsGeneral Discussion
jpouch - nausea, diarrhea, vomiting, not c.diff
N ndny
ndny Hey Everyone, here is an update. GI thinks it could be 1 of 3 things: 1. small adhesion 2. lingering GI Bug 3. mild pouchitis. Gonna get an X-ray first. If adhesions aren't the issue, next step will be scope. She feels better for awhile and then worse, its up an down. [ more ]
rachelraven A bad GI bug can be tough to get over for anyone, but we can get particularly walloped. I've had bugs that last a few days, and things that dragged on much longer. I landed in the hospital for a couple days with one one year, took me down over a week. [ more ]
ndny Thank you everyone for the replies. She will likely get a scope tomorrow to make sure its not pouch related. It seems like it should be a bug, but it is very strange. She feels good for half the day and then backslides again and feels awful. She is trying to eat bulking foods and keep her hydration up. [ more ]
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J-Pouch ForumsGeneral Discussion
Life after J pouch
PD Phils Diner
Scott F Your doc is more likely to have heard of K-pouch surgery than BCIR - they are quite similar in many (most?) ways, but BCIR surgery is performed in only a very small number of locations across the country. [ more ]
Phils Diner Thank you all so much for your replies and encouragement. I see my doc today so I'll begin the conversation. I have a friend that had the operation a dozen years ago with no ill side effects so seeing all the complications did set me back a bit. I would like to avoid a bag at 'most' costs, (won't say 'all' ), but BCIR does sound interesting. My doc has found polyps at the upper end on two occasions so the best prevention against cancer would seem to be full removal rather than partial. I am... [ more ]
Scott F Others have spelled out the choices rather well. While it's true that J-pouch surgery is a challenging process (and people are often surprised when they discover what "challenging" means), it's also true that reading the stories here doesn't offer a proper way to assess the risk of a poor outcome. The large majority of J-pouchers go on to have fantastic experiences, and they post no stories here. In order to choose the best path for you, you have to think through several questions: how... [ more ]
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J-Pouch ForumsGeneral Discussion
Permanent Ileostomy
lMluttlMlutt
hever Hi, when I had an illeo I found it was a much nicer feeling to fit the bag across the belly, hip to hip rather than dangling down, maybe cos I'm a shortie, but it felt less conspicuous, held across the body with tight underpants, also when it was to hot in Oz and sweaty I fitted a loose cotton cover over it, made my own but now you can prob buy them cos it was over 20 years ago. Agree with avoid the paste its a pain Good luck with everything! Just remembered somebody told me a few drops of... [ more ]
pattym I wear spanx holds bag firmly in place.. For men maybe compression style shorts or long boxer brief type underwear. [ more ]
GinLyn Hopefully the abscess will be gone once and for all soon! I've had several ileos off and on and am getting ready to go to a permanent one. No one has ever guessed that I have one, even in a bathing suit! The right clothes and attitude make the difference. Has anyone told you about the mouthwash trick? If you are ever concerned about lingering smell (there generally isn't one unless there is a problem!), you can use a small squirt bottle with water and a small amount of mouthwash -- just... [ more ]
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J-Pouch ForumsGeneral Discussion
Having too many night time accidents
NYC GooglerNYC Googler
dave hdave try to stop eating after 6 davehdave. [ more ]
NYC Googler Hi Jan, For me it's maybe 2 or 3 times a year at most and the Cipro calms everything down within a few hours, it's really crazy, my bacterium clearly run away when the see the Big C. It's SO tempting to just stop after 36 or 48 hours since everything returns to far better than normal overnight. I haven't tried Flagyl as yet simply because I haven't needed to and because I heard some nasty stories about metallic tastes and a rare reaction of flat out psychosis. Thanks as always, you rock the... [ more ]
Jan Dollar Yeah, for me it seems that as time goes by, my pouch is more sensitive to inflammatory bacteril overgrowth. I putz around trying to wish it away and thinking it was something I ate. In the end, I wind up on antibiotics. To avoid antibiotic "fatigue" I am alternating Cipro and Flagyl, and trying to stay off antibiotics as long as I can. Hopefully, this is a more rare event for you. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
My wife Health on the line
cancercarer4wifecancercarer4wife
Chuckus Good day! I just saw this, would have responded quicker, but, well life gets in the way. First of all, your doing a fantastic job trying as best you can to help your wife. You have my most sincere appreciation for that. Secondly, it sounds like there are numerous things going on, and, well to put it bluntly maybe the medical staff isn't sure how to proceed OR rachelraven stated "It may be more harm than good"............having said that though I'd suggest a consult with Cleveland Clinic OR... [ more ]
rachelraven With already a loss of large bowel and much small bowel, and now with what you are describing as probable metastatic cancer, I can certainly see why there are hesitations and limitations to your wife's situation. Removing all or most of her small bowel when the probability of cancer elsewhere exists presents a major dilemma. There may be more harm than good done, putting her through such an immense surgical procedure at such a debilitated state, plus she would likely never eat by mouth... [ more ]
cancercarer4wife ❤️
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J-Pouch ForumsGeneral Discussion
Overwhelming anxiety
L LisaT
AllyKat Well, the lysis worked. Actually they think it might have come back but the other thought that my problems are caused by chronic pouchitis. Waiting for surgeon to call. Originally planned tomorrow for more lysis but I dont think that is the full answer at this point. [ more ]
LisaT Originally Posted by LisaT: Well, I don't really know why. I'm not sure they knew what to do with me at first. I had 4 CT scans. I saw pictures of my scope and it was very disturbing. I spent most of it on a TPN which I hated. I was on IV steroids and antibiotics. My colorectal doc. said that it Remicade was worth a shot and it was. He has mentioned adhesions MANY times. I had a lapascopic oophrectomy and pelvic abcess surgery in 2004- the WORST experience of my life. I know that you had... [ more ]
TE Marie Lisa T, So am I reading this correctly? Your doctors are telling you nothing is wrong? Something is wrong when you are chronic pain. There IS something or somethings wrong or you wouldn't be experiencing pain. Please keep at them or someone new until someone does something to determine what is happening now. You have Crohn's now and feeling strange sensations above the pouch would not be a calming experience for me. Have you seen your OB? I'm guessing a possible RV fistula. My lower back... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Obstruction, going to the hospital?
F Fredrik
Mysticobra I had one obstruction that put me in surgery. I have had three but o ly this one got bad. They couldn't find it after ten hours of digging around. I had an illeo then and they were looking all over. The pain was so intense. I had to have painkillers. Thru a port. Omg I have never felt pain so bad in my life. Morphine would ot even take the pain away. Then they tried demerol. I could relax finally. But it didn't last long and the pain was back. Sometimes you just have to have the relief. It... [ more ]
Scott F Unfortunately I don't think most surgeons will take the time to gently help the bowel untwist. One of the natural forces that can help is ordinary peristalsis working to (and hopefully past) the kink. Reducing that peristalsis with opiates could slow the resolution of the obstruction, though I don't know if it's been studied carefully. In some cases the opiates may be needed to help keep you from chewing your own arm off, but they could also make it harder to tell if a bowel rupture is... [ more ]
CeeeeCeeee I've only had one obstruction and it was caused by a twisted small intestine. Morphine was my Godsend! I don't think I would have made it without. My surgeon kept me in the hospital 6 days. Each time he visited he manipulated my abdomen. I never asked why and wondered what he was feeling for! Well, he worked a miracle by untwisting my bowel this way! It took four days. I am so thankful he avoided surgery and his technique worked. [ more ]
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J-Pouch ForumsGeneral Discussion
Getting off meds before surgery
N nix1262
SolomonSeal Prednisone is an issue, but I would also consider the problems with coming into surgery with Remi and MTX in your system. Your healing will be delayed. The best solution in my opinion is to have a subtotal colectomy. It is much less intense than j-pouch construction (if you will still want to do that after enjoying great health with a stoma!) and will let you get off the meds in preparation for the next operation. By then all those immunosuppressants will be out of your system and your... [ more ]
shawne h Am presently on 25mg of pred and have been on various dosage for the last three years am on the list for pouch removal hopefully within the next couple months. Surgeon said to get as low as I can and still feel well and they will deal with it better than for me to be really ill and face the surgery as well my big problem now is the stress fractures in my sacrum and how the pain will be as the pred is reduced!!!! [ more ]
rachelraven I was on IV steroids and bowel rest with TPN that ended up with surgery that admit, and I did fine, even with steroids on board. They just began an appropriate taper as I neared surgery, and continued til I was off after it. [ more ]
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J-Pouch ForumsGeneral Discussion
NYC doctors need a new one
AllyKatAllyKat
ks1905 Originally Posted by desisn00ps: I agree with others about NYP and their treatment of patients. The Jill Roberts Center doctors really don't have time for their patients and it has only gotten worse over the years. Either they need to hire more doctors or they need to stop accepting new patients. Office waits are 2+ hours and once while in the hospital, it took Dr. Bosworth 10 days to come by (he was on vacation the first 5-6 days and the rest I had to keep bugging his staff to make sure he... [ more ]
AllyKat Ugg these new young Drs. Another one tells me it's a functional issue and need to go on antitripalye and won't advise surgery. But I already take a antidepressant and Ativan and it does not make a difference. I started crying and wanted till my GI came in and she was like we like to try everything first before suggesting surgery but it was up to me. Her hands are tied. Then I went to see the surgical fellow and I'm still on for Thursday but they need to figure out if what the problem is, is... [ more ]
LisaT Hi, Sorry it's taken me so long to reply. I went off cold-turkey. My pouch has always functioned well. I do not monitor my cal protectin. I'm going to look it up right now. Thanks!Originally Posted by boy's mom: Lisa, I am glad you are feeling well off remicade. I would like to know how you got off biologics - did you taper off ( with risk of antibodies building up) or just go cold turkey? Did your pouch function change as you went off? Do you monitor your cal protectin? Thank you. [ more ]
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J-Pouch ForumsGeneral Discussion
Feeling after j pouch
A ams
Shainy yeah I had this kind of discomfort for the first 3 or 4 weeks. like strange it could have been due to burning inside the anal canal. I think also I was straining too much. as strange said you have to learn to relax the pelvic floor and let things flow out with less effort. I also didn't take any immodium then. once I started taking immodium at about 4 weeks out I think the burning went. I don't need immodium now either but when I stopped I got a bit more burning/itching, so I just take one... [ more ]
Heaths Mum Hi Strange and ams, first up thank you so much for your replies. I am not in the UK but Australia, specifically Queensland. The medical system here works thusly; you have an ailment and visit your GP, if it is a serious ailment the GP writes a referral for you to see a specialist in that area, in this case a gastroenterologist. You then try and make an appointment which can take several months to get in. The specialist then sends you for, or prescribes treatment. For my sons case, he was... [ more ]
Former Member I've stopped all meds too, although the only med still prescribed is Imodium. Without the Imodium my frequency of 4 or 5 Bathroom visits per 24 hours remains the same; most days 4, some days 3 but never less. Once in a while I do awake during the early hours to use the bathroom. However, i prefer the thicker consistency of output when taking the Imodium. [ more ]
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J-Pouch ForumsPouchitis
My Disturbing Pouchoscopy Pics
CTBarristerCTBarrister
Jan Dollar The way I see it, the low carb diet concept is not necessarily an all-or-nothing thing. I do see the point in the notion of self-doubt when a person blames their non-compliance to an impossibly strict diet for their poucitis relapse. But, the modern diet, and the American diet in particular, includes way more carbs than are needed for health. So, even if eating low carb does not "cure" pouchitis, it can lead to better health overall, and for many of us, improved pouch function. So, I agree... [ more ]
TE Marie That is good news about your thyroid levels. It looks like your surgery is a go! [ more ]
Scott F When a very challenging treatment is unlikely to be followed strictly, simply because human beings are involved, the failures are often ascribed to not following the treatment regimen properly. There are two problems with this: 1) any treatment that can't be used effectively by human beings isn't very useful, and 2) sometimes these failures are really because the treatment (even when folllowed strictly) isn't very effective, but the treatment's effectiveness rarely gets "tested" by strict... [ more ]
See all 52 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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