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J-Pouch ForumsHelp! Need advice now!
Extreme anal pain/chronic fatigue/need new dr.
ChrIssy25ChrIssy25
lablover What a idiot your husband is. I am the 'well' one in our marriage. I wouldn't have thought of leaving my husband even at the worst times. 'Sickness and in Health.' I am sorry about what you are going through. Cyber hugs. Hang in there.. [ more ]
Jeffsmom I need to say that I'm crying with everyone as well. Chrissy, you are a remarkable women. you have been through so much, in fact, everyone of the people on this have been through way more than any deserves. I am amazed at the strength and determination each one of you have. All of you are so brave and far stronger than you realize. Chrissy, things will get better. You have to believe that. Your husband has to be a complete selfish ....... I strongly believe in Karma. When you are feeling a... [ more ]
Haidalyn I just had my surgery a month ago and am having some struggles of my own but I just wanted to respond because your story made me cry. You sound like a very brave and strong person and I can't believe how much you have survived. I hope you find love, comfort and support in your coming days. Your husband clearly didn't deserve you. Sending a big hug. [ more ]
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J-Pouch ForumsHelp! Need advice now!
need surgeon
MS michael s
BillV Michael, I encourage you to get additional information and contacts through his website. Susan Kay, his program coordinator, can address some of your concerns and send you a contact list of about 300 people who have BCIR’s, including those have had valve revisions to a k-pouch. I have had 4 major surgeries to date and would go in for another if needed to correct a problem with my pouch. Quality of life is very important to me. [ more ]
michael s Thanks I would like to keep the pouch but after two failed revisions and bad experiance I do not know if I want to try it again,wish I had met Dr Renhke earlier [ more ]
BillV I can’t offer suggestions for surgeons in your area since I live in northern Wisconsin, but one question you should consider is whether you would prefer to have an ileostomy with a bag or to continue with a continent ileostomy like you have had for many years. I was 68 when I had my BCIR done by Dr. Ernest Rehnke in St. Petersburg, FL and am very satisfied with the care I received and the results of the surgery. Dr. Rehnke performs valve revisions on leaking k-pouches and BCIR’s and his... [ more ]
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J-Pouch ForumsHelp! Need advice now!
pain 1 day out
U UjohnjC
rachelraven CeeeeCeeee, when I'm backed up, a warm Sitz bath does the same thing: relaxes things, then, blammo! Out it comes. [ more ]
CeeeeCeeee You might try various positions to place your J-pouch higher than your stomach. Getting down on all fours with your buttocks elevated may help the gas rise and exit. Another position/activity which has helped me is to sit on the toilet and cough hard several times. The gas comes exploding out of me! I've also stood in the shower and held the shower wand in my hand while letting the hot/warm water spray shoot straight up "you know where". This has seemed to relax the sphincters so that the... [ more ]
Jaypea Gas pain post-op is the worst. Try to get up and move around as much as possible. The threat of the dreaded NG tube my scare your bowel into moving some of that gas out. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need help with fistulas/narrowing/scar tissue. J pouch done in 1983
CO Char. O.
Jeffsmom Find a new doctor, fast. Do not let anyone touch you who has no experience, even if you have to go out of state. You can google gastro surgeons who do what you need. USNews and World Report magazine has a whole thing on gastro people and where you can go. Also, how far in Mayo or Cleveland. If you have to travel, might as well go to the best! [ more ]
Char. O. thank you for saying there is some hope. I need a Dr. that understands this. They are few and far between. [ more ]
rachelraven I will say my GI who has experience with J pouch patients and only focuses on IBD patients has said that patients with "old" pouches are coming to him with new IBD symptoms, strictures, fistulas, refractory pouchitis, etc after years of, maybe, having little or no issues. His saying that to me was HUGE, because I felt like I was slowly going crazy. Like, why after 20ish years was I feeling bad? Why did I develop a fistula? Etc. It was definitely validating. My surgeon still works with this... [ more ]
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J-Pouch ForumsHelp! Need advice now!
incontinence
M MaryL
MaryL Thanks Scott for all of your help - will call his doctor in the a.m. [ more ]
Scott F C diff can vary in symptoms, but troublesome diarrhea is most common. If I had his symptoms, I'd discuss the possibility with my doctor, at least to get tested to rule it out. [ more ]
MaryL What are the symptoms of cdiff? He has no fever, appetite is fine just this constant urgency and accidents [ more ]
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J-Pouch ForumsHelp! Need advice now!
VSL#3 probiotic
P pouchE
Scott F I think VSL #3 DS helped me stay off antibiotics for a couple of years. I still use it at maximum dose (4 packets/day), and it keeps trouble away. [ more ]
CTBarrister It's not used to treat active severe pouchitis. You need to treat the pouchitis first and once that is done, consider using it prophylactically to keep pouchitis away. [ more ]
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J-Pouch ForumsHelp! Need advice now!
lexapro and the j-pouch
ksrksr
ksr ok, I spoke with my gi doctor's nurse and she advised me not to take anything to loosen my stool. Only water and fiber. I am going to see my psychiatrist on Tuesday and talk to him about this issue with the lexapro. [ more ]
TE Marie FYI - I too changed antidepressants 5 months ago. As the Amitriptyline dose was increased the Viibryd dose decreased. There was almost an immediate effect on my j-pouch function. I no longer need Lopermide, Imodium, as the consistency of my stool's improved. I was told by my neurologist and GI that not only was it going to rid me of my migraine headaches but help my depression and GI tract as well. It's nice having doctors that work together like mine do at Mayo's. In other words it could... [ more ]
ksr I am not taking any lomotil or imodium. I am worried about taking anything to loosen it because I don't want to have stool leakage. That has been a major problem. I am calling my GI doctor's office to see what they say. I left another message for the nurse at my psychiatrist's office. Waiting for a call back. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Just ready to give up
FrancesFrances
TE Marie I sent you a PM Francis [ more ]
Frances Well i had a much needed good cry last night. I was alone my husband was on ski patrol and i just felt so sad that i just cried and i actually think there is something said for a good cry. I felt better after if that makes any sence. I do take care of my mom everyday beacause there is know one else. She is not social at all and depends totally on me. My sister that lives 4 hours away is very rich with 3 houses but she has not and will not help my mom. They are alot alike they are both very... [ more ]
TE Marie Lesandiego, I hope your broken bones heal well and you are ready to go back to work soon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I know this should be in general discussion but wanted to share the best find ever
B bladen88
TE Marie I started out with bidet bottles and still use them when I'm not going to be around my bidet and before that around a sprayer. Using a bidet helps me with more than cleaning after BM's. It facilitates the emptying of my j-pouch when I have problems doing so. Most recently it's been helpful due to pouch problems. My pouch was just dilated with a balloon during a pouch scope. By getting small amounts of water inside my pouch I have fewer BM's and less pain. I hate pain! [ more ]
Kathy A I wasn't interested in the cold water (brrr) and the cost associated with the installation of a heated bidet was not in my budget so I just bought portable ones which I have stored at relatives homes as well as one in my car. It is small enough to carry in my purse and I have total control over the water temperature and the force of the spray. I couldn't live without it now. http://www.ebay.ca/itm/Blue-Bidet-BB-20-Portable-Bidet-New-/311217075960?pt=LH_DefaultDomain_0&hash=item4875fbb6f8 [ more ]
TE Marie ❤️
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J-Pouch ForumsHelp! Need advice now!
Colon/Rectal surgeon or gastrointerologist
C Carrob
rachelraven My surgeon still practices, so I chose a GI his team recommended that he works with fairly often, for a multidisciplinary approach. My GI only specializes in IBD patients. Sorry to hear you're fitting the bill, too... 20 years after my surgery, I also started with issues. He says he's seeing this a lot. "Old" j pouches are having issues after 20ish years. Mine is with strictures and a fistula. [ more ]
Lesandiego When searching for a new gastroenterologist, ask if they see patients with a J-pouch as not all do. After my surgeries, My gastroenterologist told me he does not see patients with a J-pouch. [ more ]
TE Marie I don't think you need to go further than the area you live it to find a GI that can do a pouchoscope. My local GI did my first scope and he said all the doctors in his group could have done it as well. It was only after my cuffitis didn't go into remission that he sent me to a GI specialist at the Mayo Clinic. My local GI also caught that I also had c.diff along with the cuffitis You can get tested for c.diff with a stool sample ordered by any doctor. What I'm trying to say is it would be... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Vanity question
GN Gentle Now
Gentle Now Teehee! Guess I've had IBD too long. My first assumption is he was waiting out a fart, doing bathroom yoga to get that second push, etc. :-). Of course, he also may have been wanting to be fashionably late to something, or who knows what. But you're right. It's an interesting topic because we haven't defined what's healthy vanity and self-care pride ("not wanting to wear my illness on the outside" - love that), and what's narcissism. Perhaps I'll get a better handle on that later. For now I... [ more ]
CTBarrister I agree that vanity is to some extent an essential human component and that without it, our self-dignity and self-worth could begin to erode. The subject of vanity in general can be an interesting discussion. I recall many years ago I was at the office of an insurance company for a mediation. During the mediation, at some point I excused myself to use the men's restroom. When I got to the restroom, I observed at the end of the room a full length vanity mirror. Standing in front of the... [ more ]
skn69 Gentle, Never feel embarassed about your vanity. It is a very healthy part of the human being and a sign of a healthy psychy. Vanity is often the only thing that we have left after they have stripped us of our guts, dignity (all of those darn tests) and exams where strangers are pushing and touching our privates. As a kid, my mom was a maniac about it. Pretty nighties, always freshly washed hair etc. When they did my k pouch I was 18. I had an angel of a night nurse. She would come in at... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Getting scoped years after j-pouch surgery: how much prep do YOU do?
SC Silo City
Claudia S New member in 2015 but you answered my questions from 2013 about being scoped next week! I had similarities with Member/Silo City. My Dr/Surgeon also retired did yearly in-office simple prep for scopes. Since his retirement I have delayed yearly scoping an finding those rare Doctor's who are familiar with J pouch scoping. After reading postings I'm not as concerned with receiving (over-prep) instructions including IV's, sedation's, arranged transportation etc..that are standard an more... [ more ]
rachelraven My CRS just has me be NPO (nothing to eat or drink) after midnight, for scopes the next morning. Another doctor had me on liquids after midnight until 4 hours before, then I did a Fleets before I left the house, and one right before the test. [ more ]
vanessavy I don't have to do a prep. I was awake for my last scope and had just eaten so they used more water sprayed in places to view. I watched it all. I had no clue I was getting scoped then. I have a BCIR but they are all pouches. One doctor gave me directions and I didn't follow them and did what I normally do, nothing. I believe it is just a standard print out they give everyone, thinking we have colons. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help - Abdominal Pain Mystery - Ulcer, or Something Else?
kblgalkblgal
Scott F I think you're on roughly the right track, under the circumstances. An ulcer or perhaps gastritis are reasonable possibilities. You shouldn't combine Pepcid with Zantac/ranitidine, since they are both the same sort of drug (H2 blockers). It is okay to combine an H2 blocker with a PPI like Protonix. I'd suggest seeing if sticking to no more than the labeled doses does the trick (I can't tell if you are), since too much medicine can cause plenty of trouble, too. I've moved plenty of times... [ more ]
Jan Dollar Since your symptoms improved with your current treatment, I think you are OK to stay on your present course. Upper GI issues caused by NSAIDs should improve over time after withdrawal of the NSAIDs. The same is true of pouchitis caused by NSAIDs. Antibiotics are not needed for that. NSAIDs are fine until you have side effects. Then they are not fine. I was able to take them for years, then got piuchitis from them, so I had to stop them. I now take them only for short courses only. Follow up... [ more ]
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J-Pouch ForumsHelp! Need advice now!
my son
D Dennell
Dennell Thank You!!!! [ more ]
Jan Dollar If you don't get any replies to your question, try doing a search for posts about fistula repairs. Most people have issues with rectovaginal fistulas, so those repairs are different. fistulas can be very stubborn and the longer they are present, the more difficult they are to deal with. Getting a second opinion from a surgeon with experience with this type of surgery would be a good idea. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
needing advice asap
G GoReds
Jan Dollar Oh no! Please do not post personal info! Edit your post, or I can do it for you. You can share private information through a private dialog. This is a public forum, so private info is not secure. i would suggest that you have your husband come on and ask some questions. he can ask anything, and set up a private dialog with someone. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Take down in one week
I ITO
Scott F You should be able to regulate stool consistency with soluble fiber (Metamucil, Konsyl, Citrucel, or Benefiber). You could try gently experimenting with the choice of fiber, timing, and dosing to see what works best for you. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Weird pain
R rabbit81586
bladen88 Sorry to hear the troubles your going through with the VA if you need more help the vfw and others have people that will help fight for you as well if you haven't talked to them already and they could possibly get your status changed to retired as well its worth a shot I am also at 60% right with a few 0% as well I wasn't to happy about getting retired as I wanted to stay in but with our great leader and cut backs they are MEBing whoever they can good luck with dealing with the VA. I'm... [ more ]
rabbit81586 Thanks! [ more ]
TE Marie Thank you both for your service [ more ]
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J-Pouch ForumsHelp! Need advice now!
Just swallowed a whole almond
J Jpouch8888
Jpouch8888 All turned out ok! :-) [ more ]
CTBarrister I am guessing an almond is only slightly larger or perhaps even similarly sized to the capsules one is asked to swallow for the capsule endoscopy. I actually refused a capsule endoscopy that was recommended in 2007 because I looked at the pill and thought NO WAY am I getting that sucker down without choking. I was able to observe the pill because my father's friend was, coincidentally, an investor in the company that makes them and when my father discussed with him that I might go for the... [ more ]
Spooky Unless you have a known stricture, it's not likely that a single almond will cause any significant problem. If you'd swallowed several, that might have been more of a concern, but I wouldn't worry about just one. You may feel it when it passes, though, as it will be larger and harder than what you would normally pass in your stool. BTW, I see your post is a couple of days old. Did it ever make it through? EDIT - swallowing an almond with a loop ileo may be a little trickier. This would... [ more ]
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J-Pouch ForumsHelp! Need advice now!
dilation with sedation and now i cant feel my rectum multiple accidents
dgtracydgtracy
CeeeeCeeee I was going to say that I had some minor surgery on Friday and was so thrilled that I experienced no pain whatsoever for more than 24 hours. Thought I was out of the woods! NOT! The anesthesia wore off and the discomfort (pain) set in! Fortunately, taking Tylenol every four hours for a couple of days took care of it. Interesting stuff they are using these days for local anesthesia! [ more ]
dgtracy Well my father recorded the conversation with my surgeon after the procedure was over. In the recording she says that she used a new local anesthetic that will last several days. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cramping within minutes of eating
T tulsamom
tulsamom Thanks. I'll do some reading on that. I had IBS a few years before I got UC after a serious bout of C. Diff. It was bad for a while and then just sort of went away, I think. It was the early 90's and it's a little fuzzy for me now. [ more ]
TE Marie In addition to what Jan suggested you might want to google IPS. That's what the official wording is for it after we get pouches. There's one of Dr. Shen's, and others, studies that discusses using antibiotics for IPS treatment. It's been the same treatment as for pouchitis in my case. You might want to consider a c.diff infection too. I had it before and after my colon was removed. Cramping and watery BM's are symptoms for it too. Lopermide, prescription Imodium, and/or Metamucil (I use... [ more ]
tulsamom I'm so glad you said that because when I read about IBS it doesn't seem to be shortly after eating. I will do a real bowel rest like my surgeon recommends and give it a few days. Then if it's not better I'll call him. I don't feel hopeless now. Thank you, Jan. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sore and painfull
TH Tom Havenner
jd9998 It sounds like you have a lot going on Tom, and I hope you start feeling better soon. I am curious about the rash, if this is caused by moisture. Often when using a lot of rectal medication, we leave the outside of our rectum moist. This will soon lead to a nasty rash. I suggest that you use some baby powder on the outside of the anus. The drier you can keep that area, the less chance of you getting a rash. This is assuming that it is a normal type of rash. If it is something more... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Want J-pouch removed
TL T. L.
AllyKat PS Didnt see your post about adhesions. I had the surgery, took 6 months and lots of tests to convince my surgeon to do it. I literally could not eat, it got to that point. Yes, non stop gas can be a cause. Your system trying to push things thru. Although I still on occasion have problems they r no where like they were before. I had this surgery 4 years ago. You need to either push your surgeon in this matter or find someone else. In the meantime, use a heating pad. It should help. [ more ]
AllyKat I've been trying to have my pouch out for 14 years. They keep trying more things. Sometimes they work, sometimes they make me more miserable. Good luck trying to get it removed. I live in fear of what will happen to me when this med stops working. I guess I could Dr shop but if and when the time comes these r my doctors who know my history and I feel comfortable with them. [ more ]
ElmerFudd Just my opinion - because I know that adhesion lysis surgery can create more adhesions - but IMO it is totally worth a try to go through laproscopic adhesion removal surgery. If that is the cause of your issues, you will know shortly after it is done. Better than doing nothing and not trying. I, and several others, have had successful adhesion lysis procedures done. Was getting a blockage every few months in my first year. Since then - no complete blockages, very few what seem to be partial... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ouch!
S sally85
rachelraven I had that issue after my first surgery. It was pretty painful. I had to have the nasogastric tube placed again, for a few days. Things started up about 5-6 days post op. Intestines hate being touched, and yep, often go "on strike" for a bit. [ more ]
TE Marie Welcome to the j-pouch club Sally Urinating was my biggest problem after surgery. I thought about that when you wrote about your tummy pain. It's bad enough to have the pain from surgery and adding pent up gas and fluid makes everything worse. Hopefully your new plumbing system will wake up soon. Walking isn't too much fun at first but the more you walk the better for your recovery. [ more ]
Scott F It's common for the intestines to go on strike for a while after surgery. It's called a post-operative ileus. It's miserable, but you should be fine. They probably won't discharge you until there's evidence that your intestines are moving, since you might need a naso-gastric tube if things get backed up. Mine lasted 10 days... [ more ]
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J-Pouch ForumsHelp! Need advice now!
rectal pain
P pouchE
TE Marie I take Norco (hydrocodone/tylenol) daily for abdominal pain and more doses when having pouch pain. Take Care [ more ]
Yukon traveller It has been a year since my surgery and experience this on a daily basis. It has not gotten any easier to deal with and have had no choice but to be using percocete to deal with this. I have to use calmoseptine after every bowel movement otherwise i can be found dancing around the bathroom. I would also appreciate any feed back on the aformentioned post. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Loss of elasticity in J-Pouch
MS Mary Schneider
Arnaud Hi, I've also had a very high number of BMs per day and night due to the pouch not emptying well. Don't know whether that was due to loss of elasticity or not, but anyhow my life-saving solution to this problem has been to use a catheter to empty the pouch much easier and better. Hopefully it will do the trick for you too ! Look for the thread "irrigation tube ... anyone ?" for details. Good luck, A [ more ]
Jan Dollar I'd like to say this is easily reversible, but the ileum has limited stretch abilities to begin with. If you have chronic inflammation, it causes fibrosis of the bowel walls. This equals a stiff pouch, or loss of elasticity. Chronic pouchitis can also lead to dysplasia (which can be a precursor to cancer), so it really should be treated. The tough thing is knowing if you have pouchitis or just a finicky system (IPS), but IPS does not cause physical damage. Dr. Shen has treated more sick... [ more ]
Mary Schneider Thano you for responding. That may be the case. I've tried dealing with my issues on my own for the past 5 years, ie chronic water diarrhea. I'm supposed to se Dr Shen at the Cleveland Clinic. Hopefully he can advise. I would hate to have another surgery.... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Explosive-too much noise
T Tamtam
jeane The courtesy flush works wonders. I sometimes use it a few times. Also run the water in the sink. That helps too. [ more ]
rachelraven Same here. 24 years later, everyone I work with knows my story, and a full on evacuation is more important to me over noise. I only go 4-6X a day, though. You our can always do the courtesy flush. �� [ more ]
Annikki I have no problems sharing my situation and after 16 years it doesn't bother me anymore that I am a noisy pooper. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch flopping over on itself
MS Mary Schneider
skn69 There are lots of this type of problem with k pouches...when they 'fall off of the wall' they can flop or twist over. I had mine tacked up to the wall again because it was twisting. It wasn't the first time either... they did it with a laporoscopic procedure...not open surgery. There are a lot of solutions that may be possible through laporoscopy without needing either open surgery or full blown pouch revision. Ask your surgeon or have him refer you to a lap specialist. Sharon [ more ]
Jan Dollar I have heard of this, but mostly associated with an s-pouch. i have not heard of non-surgical options for this. I have read about pouch revision as opposed to pouch redo, but I am sure it depends on the health of your current pouch and the cause of the defect. Jan [ more ]
TE Marie Did they discuss having minor surgery to suture it in place or a pouch advancement to make it smaller? Can they make a new jpouch for you? Have you discussed a K/BCIR pouch? I don't have one but several members have gone to those. Good Luck [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need referral for mayo or Cleveland clinic
K K78
canlafre Hi. I had j pouch surgery with him in October of 2008. I had no complaints or complications. I went straight to a j pouch in one surgery. My GI doc recommended him. He said he was the best and he would send his family to him. I'm not sure what advance jpouch surgery is. But I trust him with my life. I cried when I found he was leaving. I would not hesitate to have him as my doctor. Not sure if I helped. [ more ]
K78 Hey canlafre I met with dr. Hyman when I was in Chicago. He was very nice but I worried about his experience level with pouch advancement surgery which he recommended. Just curious if you had surgery with him what type & how is the outcome? Thanks! [ more ]
K78 Thanks all for the replies! [ more ]
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J-Pouch ForumsHelp! Need advice now!
BM after right after eating
salinabeanosalinabeano
rachelraven It used to be more common for me to have to go after eating, not usually 15 minutes, I'd say within an hour, but that's not always true for me now. I can defer for some time now. Time may change things for you, eventually. [ more ]
CTBarrister If you take an anti-spasmodic 30-45 minutes before meals this issue probably will be nipped in the bud. Bentyl, levsin or donnatal. Surprised nobody has mentioned this to you - irregular peristalsis or excessive peristalsis is a very common issue after J Pouch surgery. The anti-spasmodic drugs can make you feel a little loopy- I found that donnatal has the least effect in that regard. [ more ]
ChrIssy25 Originally Posted by salinabeano: Hello. I had jpouch surgery 4 years ago. I am happy with the results except for when I eat breakfast, lunch or dinner whether home or out, I feel that I need to have a BM within 15 minutes of eating. I am taking lomotil 2 tablets 4 times a day along with levsin also 2 tabs 4 times a day about 15 before meals. I almost do not want to go out and eat with my family anymore or if I do go out, we have to do our errands first then eat so I can rush home to BM. I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch advancement
K K78
vstRN Hi K78, I'm really sorry to hear you are going through this. I had a pouch advancement which was done in 3 surgeries. Unfortunately, it was not successful for me and my RV came back after about 2 months from second take down. It was emotionally and physically exhausting. I ended up having my pouch removed. My j-pouch was unfortunately nothing but a nightmare for me. I have a permanent ileostomy and honestly, I finally have my life back. Oh - and Crohns was ruled out for me. I think a j-pouch... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis or something else?
R Rose2368
Rodshunny Hi. Sorry to hear about your troubles. Has your Dr. Ever tested you for C. Diff infections? They really did a number on me before my pouch. They caused nasty smells with me. Just wanted to put that out there just in case. The symptoms are similar to pouchitis...pain, diarrhea, bleeding, etc. Mine went undiagnosed for two months. It was like night and day when I got rid of it. Good luck. I hop you improve very soon! [ more ]
shadoe-d normally when i get pouchitis it is accompanied by a severe smell "death smell" is what i tell my dr he puts me on aline and if that don't work flagyl [ more ]
Jan Dollar Canasa is for cuffitis (usual cause of bleeding). Three days is not long enough to expect improvement. It is entirely possible to have both pouchitis and cuffitis. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Extremely experienced J-pouch patient- AMA
AD Adam Dirks
shadoe-d if you are near a Cleavland clinic Dr jaun nogueras 954.659.5101is one of the best ..... i had multiple problems with strictures sprung a leak had to be fixed it hasnt been a good thing i tried several years ago to get The Barnett Continent Intestinal Reservoir (BCIR) put in because of the constant accidents but they told me that i didn't have enough intestine to do it . I wish I had been offered more than one type of surgery for this i wouldn't have picked the j pouch he did two of my... [ more ]
ks1905 Adam, Have you changed your diet or added probiotics over the years to your regiment? Any lifestyle changes that you made because of your j-pouch? I'm a j-pouch noobie, my take-down was ~7 months ago. [ more ]
ks1905 Originally Posted by 13 Years & Counting: Yes, it can be done, and yes, it's under sedation. You have to find the correct doctor to do the procedure though. As I said, the first doctor said it couldn't be done, but to me that didn't seem right. I turned to this site for help & found it. I didn't know that it was such an issue, my stricture was towards the top of my pouch and the GI (Dr. Steinlauf) just dilated it while I was under-sedation. He is part of the NY Presbyterian Cornell team. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need some Ilex!
Natisha1971Natisha1971
charlottesometimes Hi, I hope you found an iLex supply. In case you didn't, I buy mine from here: www.ilexhealthproducts.com . I believe if you are in England/ Wales iLex is now available on prescription. [ more ]
ELH Ilex is available again. I had an email stating that I can expect my order to be delivered in 3 days. [ more ]
dawn58 I have used just zinc oxide and it worked great. Also, very cheap and very easy to find. [ more ]
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J-Pouch ForumsHelp! Need advice now!
feels like hangover but don't drink
ccpouchoccpoucho
ccpoucho Thanks. I finally figured it out and you are right I was dehydrated. I went back to 1 24 ounce of Gatorade a day along with my smart water. I was drinking 90 ounces of smart water each day but stopped the Gatorade. Thank you both for the response. As soon as I think I have this figured out, something else happens. [ more ]
TE Marie The hangover feeling might be do to partial dehydration or could you have something like Chronic Fatigue or Fibromyalgia? You can never get enough sleep with them. Good Luck [ more ]
Jan Dollar Maybe a virus? Flu? I got something right after the holidays. No fever, some cold symptoms. But what really threw me for a loop was overwhelming fatigue and weakness. Walking up three steps made my knees shake. My thighs felt bruised (but weren't). I wound up with a sinus infection. Now I feel back to my baseline. I am hoping it was just a virus. My primary doc did not think it was flu. A severe case of pouchitis can cause fatigue too. Hopefully the Flagyl works. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
dental work two weeks before surgery
K kariA
Jan Dollar Sounds like good news! The canker sore is just more evidence that your colong is causing you grief. Jan [ more ]
kariA thank you Jan, Sharon, Scott and Jaypea, So this morning at 7:30 i got a call from dentist to be there at 8:45. At 8 i called the CR surgeon's office letting them know i have to go to dentist and if there is any antibiotic the surgeon doesnt want me to use. Have not heard from CR yet, i later learned his secretary is off today. Got to dentist. They were all prepared to do root canal but first we took another xray and he (dentist) saw there is not problem around nerves. i also did the ice... [ more ]
Jaypea If you develop a fever or systemic infection then your surgery will be cancelled. You want your body to be in the best condition pre-operatively and that includes dental health. Please see your dentist to,have your tooth fixed quickly. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgery scheduled this week/fissure
R Rylansmom
TE Marie This has got to feel like a never ending dilemma for you. I agree with Jan's advice - seek out a colorectal surgeon. I was cringing when I read about your local doctors. They probably are doing what they think is the best for you but you need specialists now. The thought of an exploratory surgery like this is scary. I know how you are feeling with the pressure/full feelings too. I thought things with my 4 year old pouch were improving until around a month ago. I have been in excruciating... [ more ]
Jan Dollar I'd ask for a consult with a colorectal surgeon and an EUA (examination under anesthesia). Perhaps this is the "surgery" the general surgeon is talking about. But I would not want to give a blanket authorization for anything, sphincterotomy in particular. Jan [ more ]
Rylansmom I am not in as much pain actually passing stool. I just have an extremely full/pressure feeling at all times. I've delt with butt burn if I have ate the wrong things and it has been more difficult to pass stool at those times. Just frustrated, feels like more is going on but don't where to turn or what test to ask for. [ more ]
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J-Pouch ForumsHelp! Need advice now!
pain
U UjohnjC
Jan Dollar I'd give your GI a call first thing Monday morning. If an abscess is brewing, you should not wait until Friday to address it. Needle-knife could be the answer ultimately, but you may need something done right away. Maybe a CT scan to check the status can be done tomorrow. If your pain becomes severe or you spike a high fever, you'll need to go to the emergency room. Jan [ more ]
UjohnjC jan i also been having a lot more discharge from my bottom [ more ]
UjohnjC jan been about a month going to see GI this friday talk about needle knife option? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post NG-tube pain - help!
J Jets99
Jets99 Thank you for the tips! I am trying them as we speak. Fingers crossed it gets better soon! This is so uncomfortable and painful. [ more ]
TE Marie I don't know the yoga name as well as how I get the gas out. Think of gravity so if you position your head lower than your abdomen the gas will rise up and you will fart. Get on all fours, knees and hands then reach as far as you can in a stretch so your head will be on the floor and your butt will be up. You can also try laying face down on the floor to push the gas from your abdomen out - this one hurts more than the other way. I still put my arm on my abdomen and apply pressure below my... [ more ]
Jan Dollar The problem with pain meds is that they slow the gut, prolonging the time it takes for this gas to work its way through. So, it can be counterproductive. Gas pain can be extremely painful, I know. Try to move around as much as possible and drink clear liquids. Tea is good so is grape juice. Avoid apple juice, as it can contribute more gas. One you start farting, you will feel so much better! Sorry your vacation is being hijacked! Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch and blood
T tiffanygoad
bladen88 I just hit hit a year after my surgery and I am in the same boat as you I think I'm going to bring this up to my doctor as well I had blood work done the other day and my white blood count was a little high so I'm starting to think this could be what is going on with me [ more ]
TE Marie We are not supposed to push hard when we go. Easier said than done. You could have internal/external hemorrhoids or you might have cuffitis when causes blood sometimes and it shows on the TP. It also can cause anal irritation/itching/burning. I have chronic cuffitis and if I forget to use my suppositories for a while I am quickly reminded with burning pain and hard to pass BM's as everything is swollen up at the bottom of the pouch due to cuffitis. I really hope you just have hemorrhoids or... [ more ]
Scott F Hemorrhoids would be my first guess. Why do you think internal hemorrhoids? Couldn't they be external? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis or something else?
C Crystal<3
13 Years & Counting If the medication doesn't help within a few days, or if your symptoms gets worse, call your doctor and ask to be scoped to see if there's any kind of stricture/inflammation and/or blockage. (Like the others have said.) Keep your diet low key for now & be sure to drink lots of liquids. Feel better! [ more ]
rachelraven When I couldn't/can't pass stool and feel like that, it's been related to outlet strictures and/or inflammation. Dilations have helped, and when they don't, steroid tapers at this time have Allowed me to pass things easier. [ more ]
Scott F Different things (including pouchitis) can feel like what you're describing. If the metronidazole (Flagyl) doesn't help in a few days it could either be 1) something other than pouchitis, or 2) pouchitis that needs something other than Flagyl (like Cipro, for example). Pouchitis isn't really an "infection" most of the time, but seems to be helped by rebalancing the bacteria in the pouch with antibiotics. Have you had a pouchoscopy? It can help figure out what's going on, especially if it's... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Frequency of bowel movements
M Marc,NJ
Scott F Is the high frequency of BMs new, something you've had every day since the surgery, or something else? I've used Metamucil every day since my surgery 12 years ago. I have no idea if it would help you - perhaps not. I also use Lomotil (some folks prefer Imodium), and these will slow the gut and might reduce your frequency. [ more ]
Tenxbless I have had frequent BM earlier in my recovery from colon cancer, but I am on Lomotil (not sure if that's spelled correctly) now. My normal days are 3-4 BMs based on my intakes. [ more ]
Marc,NJ I'm not taking any meds, supplements, exercise a few times a week. Have a positive since my surgery, I believe most issues are with diet, not sure the correct diet that will help. If I don't go to the bathroom, I'll have discomfort until I go [ more ]
See all 4 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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