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J-Pouch ForumsGeneral Discussion
Anyone use Cleveland Clinic or Dr. Remzi to remove j pouch/close up butt?
LORI726LORI726
LORI726 Hi! i am in Allentown PA. Where are you? And how is your health currently going? This is gonna sound crazy but I had an MRI and barium enema x-ray, and pouchoscopy with Remzi the end of August and I never personally got the results of these. I am not sure if I am not using their EPIC system correctly, but I can't see all the results(only blood lab results which who cares about them...hahaha). Remzi spoke to my husband tho and the possibility of re-connection did not sound good. At least not... [ more ]
crohn's j-poucher Lori I'm a patient of Dr Remzi's also - since 2005 at Cleveland clinic - and now in NY. I'm in PA also - where are you in PA? What did you decide about your situation? [ more ]
LORI726 Thanks for your thoughts/responses! I had a J pouch formed in 1992 for UC. I was re-diagnosed with Crohns in 2010/2012 and it has been a bumpy road since then. I also have a stricture at the inlet of my pouch which has been asymptomatic for me personally (don't know if had any effect on anything inside). Remicade worked awesome for me but only lasted about ~2 years (developed antibodies) and Humira and Cimzia were useless for me. I don't have much faith in drugs (and I am a pharmacist!)...ok... [ more ]
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J-Pouch ForumsGeneral Discussion
Hard intestinal spasms
J Jddarr66
JeffDC I had them for several weeks shortly after my take down. [ more ]
Mysticobra Let me just say this may not be the same. I've had my pouch removed 2 years ago. I have severe spasms just above my stoma and below my rib. I just move the wrong way and it freezes me until it let's up. These may be diaphragm spasms. I don't know. Never talked to anyone about it. They don't last long. But they are bad but don't affect anything else. I'm pretty sure mine are just diaphragm spasms. Richard. [ more ]
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J-Pouch ForumsHelp! Need advice now!
rectum spasms
M marshall
Wee sylv I'm sorry to hear that, it might be nerve damage due to the biopsy. Since I had my colectomy 16 years ago I have suffered from anal spasms, ranging in pain from a feeling of heaviness and discomfort to agonising pain which literally stops me in my tracks. I'm in the UK and this past 6 months the "attacks" have increased in frequency. I requested an urgent outpatient appointment to see my surgeon. I finally got to see him 9 weeks later. He was not my usual "guy" so I was describing my... [ more ]
CTBarrister Call the medical provider(s) who ordered and/or performed the biopsy and report the symptoms. [ more ]
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J-Pouch ForumsGeneral Discussion
GI Docs - NY / Long Island
KennyJG44KennyJG44
bml Dr. Chris Demetriou in garden city is amazing. [ more ]
Scott F Kenny, it almost always matters who you see. Perhaps you can get a second recommendation from your surgeon? [ more ]
KennyJG44 Thanks, I'll take a look! My surgeon, of course, wants to send me to one of the GI's he works closely with, which is fine except he does not take insurance. However, 2 of the other GIs in that office do. I wonder if it'd matter who I saw??? [ more ]
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J-Pouch ForumsGeneral Discussion
935 pound lift with a j-pouch
D Daleer
SwollenColon That's great. Very impressive lift I don't move anywhere near that weight, but I do still get 3-4 full body push-pull routines and a leg day in weekly. I think physical stress is good for the health of a J-pouch, and 2.5 years with mine and zero problems. Sometimes I ask myself if my current situation is better than what it was pre-diagnosis. [ more ]
skn69 Congratulations...major, Congratulations...you are an excellent example of what people can do if they set their minds to it...and probably a hero to more than 1 future J poucher. You show that a j pouch is not an end but just a detour to a world of possibilities...thanks. That said (and I always play the devil's advocate...just my nature), beware. Time has a funny way of changing anatomy so if you feel pain down there....slow down or stop...pointless to risk your pouch's life over a lift. Sharon [ more ]
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J-Pouch ForumsMen's Health
working out
D darealfoo
Former Member ❤️
gonerunningshawn I used to exercise regularly weights and cycling before I became ill, I had a 3 stage op and have had a pouch since 2007. I got back into the gym a year after, I started a bit to soon and have hernia in my groin but it's not an issue. I always wanted to run a marathon so I trained myself, it was part of my journey post op dealing with the depression I had. I ran my first marathon in 2011, I have gone on to run many ultra marathon's and quite a few 100 milers. Exercise has been the key... [ more ]
Daleer https://www.youtube.com/watch?v=UzpggXWIryM I did a 615 raw squat tonight. I've had a j-pouch for 11 years (10 years since takedown). [ more ]
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J-Pouch ForumsHelp! Need advice now!
K pouch and Gastroparesis
A angilanr
angilanr Thanks Sharon. I do drink a mild laxative tea and irrigate. Really just tryin to make sure I'm not alone. Happy Ostomy Day Ang [ more ]
skn69 Anglilanr, As Jan said, a BCIR and a K pouch are essentially the same pouch, it is just the valve that is different... As for output, depending on what I eat, I usually intubate 8 to 12xs/day...my pouch hates gas and will not let me sleep until it 'burps' or evacuates its gas so I need to stay up late enough to empty...and I can empty up to nearly a liter. What do you use to thin out your output? Are you drinking prune or grape juice (or both)...Do you drink green tea (they say it helps,... [ more ]
Jan Dollar What has led you to believe that a BCIR would function better than a K-pouch? It may be that an end ileostomy is your better option. But the BCIR doc should be able to let you know one wayor another. This sure sounds intolerable. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Having J-Pouch removed
RE5RE5
Shavon Kara, If you don't mind I would like to send you a private message about what you shared in this post. Thanks! [ more ]
chiromancer Before I had my pouch removed, I had an end ileo with the pouch disconnected the stoma was under tension and because of that my stoma was nearly flush and difficult to seal, lots of leaks. When they removed the pouch I had the stoma revised and everything works well. IMO the stoma needs to stick out a good 3/4" or so from the surface of the body (assuming the opening is at the top) for the function of the external pouch and seal(s) to work well. I spoke to my surgeon about that before he did... [ more ]
RE5 Had another question and I figured I'd post it here. Has anyone had to have multiple stoma revisions? Temp ileo I had from the stoma was completely flat and a nightmare. I went to an end ileo and had it revised and it got better but it's angled and still leaks at the bottom. I'm going to talk to Dr. Strong when I go in for the pouch removal and I'm hoping he can fix it for good this time. [ more ]
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J-Pouch ForumsGeneral Discussion
Hello Old Friends/UT Pain
ConnieConnie
Jan Dollar Connie, sorry to hear about this, and also the late response. Been off the grid lately. Unfortunately, yes it is more common for j-pouchers (or post colectomy in general) to develop urinary stones. Part of it is due to chronic dehydration. IBD is a factor too, but colectomy is probably the bigger deal. I don’t know if Thomas is a big soda drinker, but that could contribute too. Hard to believe that pain meds are their first and best option! Labs and and IVP x-ray could help diagnose without... [ more ]
Scott F Hi, Connie. Dehydration can encourage stone formation, so if Thomas tends to let himself get dry, stones would be one of the numerous risks. Good luck with (hopefully) satisfactory urological care. [ more ]
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J-Pouch ForumsGeneral Discussion
Are Antibiotics Safe ?
FM Former Member
Former Member No viral infection. I've completed the antibiotic course now and no adverse effects. Prior to my ileostomy and J pouch I tried the probiotics yogurt type drinks and the set yogurts and they made me ill, caused urgency and diarrhoea, Took a while to realise what was the cause, each time, I thought it was the start of an UC flare up; that was some years ago, never tried em since, but thanks for the suggestion. [ more ]
Jan Dollar My opinion is that antibiotics are as safe or problematic for us as they are for the general public. If you need them, take them. Just be alert for side effects. Don’t ask for antibiotics if they aren’t appropriate (such as viral infections). Jan [ more ]
skn69 Over here in France, they automatically give a script for Brewer's yeast along with each script for antibiotics...I didn't get it back in the 80's but now the science backs up the idea of putting the good flora back once the bad have been irradicated... You can take probiotics as well if you feel runny or bubbly or gassy once you finish...a 5-7 day run should not destroy your pouch but eating some yogurt daily wouldn't hurt either. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Should I be passing mucous or poo from new my j pouch? I have a temp ileo now
FM Former Member
FelixGust Thanks again Bobish it is very interesting to compare other people's experiences. [ more ]
Bobish I didn't notice an increase based on what I ate. Too start the was barely any mucous, but then I was in a lot of pain (so maybe I was just holding onto it too much' after 2 months I was emptying morning and night fairly consistently, by bathing my butt in warm water to open the bowel. This made me much more comfortable. I didn't so much pass beetroot but the colour changed noticeably (but not dramatic) when I did eat beetroot. I guess any foods that induce cramping and spasm in you could... [ more ]
FelixGust Thanks Bobish for your reply. I hope you don't mimd me asking but does that mean that you passed beetroot? What I am wondering is if anyone had noticed that when they eat something e.g gluten, dairy, an overly large meal or other, if they suddenly have an increase of mucus production and unrgency? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch surgery
E Eagler123
Sharon W It sounds a lot like me from last surgery until 11 months, I was always up and made at least 15 trips a day to the bathroom. I am still on the Metamucil 2 times a day and Imodium, with only 2 trips at night, sometimes only to pee. I could probably stop some of the Metamucil or Imodium but I am afraid to go backwards. So from my experience it takes a lot more time, but I would definitely ask again in 2 weeks if the nausea,weight loss, appetite is not resolved though. [ more ]
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J-Pouch ForumsHelp! Need advice now!
mucus incontinence after first surgery
M min990
FelixGust Thanks so much min990, that was really interesting and helpful. [ more ]
min990 Hey Felix, Yes it it is possible to train your sphincters as they are muscles like any other muscle in your body. There are actually two sphincters, one is under autonomic control (meaning you can’t control it) and the other is under voluntary control (you can control it!) Here is the link: http://www.wakeman.co.nz/site/...%20for%20leakage.pdf [ more ]
FelixGust Re: mucus incontinence after first surgery [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch with Rectum
mzmcgee1232mzmcgee1232
mzmcgee1232 No i cant tell....i just go to the restroom everytime i get the urge..sometimes if im in bed i can pass the gas tho....its very beneficial to have the rectum because i can go hours of holding my poop...i was told that i had a 5mm spot that was still colitis on my rectum but it doesn't bother me at all an im not on any medications for it.... the only thing i take is the imodium one pill a day [ more ]
Scott F There's generally 1-2 cm of rectum left (the "rectal cuff") in a stapled procedure. That is indeed where cuffitis can develop. Most of us are connected up with staples, which is the most reliable procedure. In a properly done hand-sewn procedure there is little to no rectum left, and the ileum is sewn more-or-less to the innermost part of the anal canal. [ more ]
mzmcgee1232 Thanks Scott im going to have to look into that... i think he did meantion that it was something new he been doing for years...i will check into that tho...thanks for the info... [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone develop a hernia following takedown?
SW Sharon W
Daleer Yup - incisional hernia cause i started lifting heavy. Actually I'm grateful I got it cause my doctor bullet-proofed me when he fixed it. First of all I had been having obstructions...when he went in to fix the hernia he cleaned up the adhesions and put down a film to prevent them in the future..which is exactly what it did. I've been eating whatever I want ever since including lettuce and mushrooms which would have killed me before he put down the film. Secondly whatever he used to patch my... [ more ]
Sharon W Thank y'all! I am sitting here waiting for surgery because workers comp denied my claim. But have constipation which I haven't had since before UC 6 years ago. And pretty bad pain. Is strangulated different for jpouchers....or should I call someone? Wait overnight and if same go in? [ more ]
N Fos I got a ventral hernia a few years after takedown that had to be repaired. It was straight down the middle of my scar and I had about a 2 inch wide section of nothing but scar tissue holding my intestine in. It was fixed via a corset type repair, kinda like a tummy tuck. Anyway, my doc said to never lift anything over 15lbs and definitely don't do sit-ups or any exercise which strained my abs. It's been about 7 yrs since that repair and now I'm starting to feel like I have another one, but... [ more ]
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J-Pouch ForumsGeneral Discussion
Gas? Cramps? Obstruction?
KennyJG44KennyJG44
KennyJG44 25 years septum free - god bless! I had always been hesitant about the fiber, but I suppose it is worth a shot. I have been feeling pretty decent for the past 4-5 days, but, as you said, it can't hurt (hopefully!). I'll do some quick research on this site and see how people usually start with fiber. Thanks! [ more ]
Mary O I have to say that I don't feel as up to date as some others on this site so take what I offer with a grain of salt. I had my surgery 25 years ago and was symptom free until a few years ago. I couldn't muster a bowel movement, pushed so hard that I ended up in the hospital on vacation for a couple of days. I started in pelvic floor p/t after that, which lasted quite a while. I've been in and out of p/t ever since, although I've gone 9 months without it, which has been great. I credit the... [ more ]
KennyJG44 Hi Mary - that is interesting, I had never heard of tightening before. Its usually just the stricture talk at the anastomosis site that people mention and have issues with. I am surprised overtime I hear that fiber is being used by one of us pouchers. I guess I have the wrong impression - I always assumed it was a bulking agent in which case would make it more difficult for us to move things along, not easier. Maybe I should try it as well....is Metamucil the gold standard? I haven't read... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Must be in a flare
A AARON
AARON Thank you Scott! [ more ]
Scott F This is most likely food poisoning/gastroenteritis, just like folks with colons get. For it to be a "flare" there would have to be something like cuffitis or pouchitis "flaring" (worsening). We are at greater risk for dehydration, of course, and that's your greatest risk now. If you're no longer peeing a few times a day, or if it's dark, you need to take some action. If water alone isn't doing the job, oral rehydration solution (or Pedialyte) might do much better. If it's at the point of... [ more ]
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J-Pouch ForumsGeneral Discussion
Ostomy insurance medical device exclusion
marriedguymarriedguy
BillV Unfortunately, insurance is noted for finding ways to reduce coverage. I have found that it pays to be persistent with your contacts and appeals, being sure to have your facts organized in advance as well as documentation of your need from your doctor. If UHC will cover bags and wafers for ileostomies and stoma covers for colostomies, they should also cover Ampatches or similar stoma covers. If your appeal is unsuccessful, there are other inexpensive alternatives such as incontinence pads,... [ more ]
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J-Pouch ForumsGeneral Discussion
Random blood but no other symptoms
R RB15
RB15 Hi Debra yes i have exercised for many years so it would be classed out of the ordinary for that to suddenly be a factor. I didn't have any blood since Tuesday and have just had a BM now with the blood mixed in with the stool creating a very brown / red colour but definitely on the red side. I stopped having the oat energy bar sonce Tuesday so naturally was thinking that was the culprit until now.. Got the appointment with the Surgeon this Tuesday. Thanks [ more ]
Debra Yarlett Do you excercise? Sometimes this I’ve found recently can cause bleeding. [ more ]
RB15 Well i had a BM after work and it was quite formed with zero blood! It's relieving but frustrating at the same time, you might be right with your suggestions of a doc and gastroenterologist Scott i'll look into it. I'm wondering if it might be an energy flapjack i have every night as a snack, it's got alot of oats in and you can feel them not being the easiest food to digest whilst chewing them... Thanks again for the advice! [ more ]
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J-Pouch ForumsGeneral Discussion
Son takes a long time to empty pouch
N ncsowers
ncsowers Is it painful? [ more ]
twinkie Even after 5 yrs, he can have strictures at the anal opening leading to the pouch entrance. Hence, if strictures present (which is scar tissue, narrowing of anal opening, dilation may be advised to "breakup" that scar tissue/ strictures", and dilation at the GI's office? It may be enuf to help improve him emptying/ voiding his pouch quicker. Questions to ask ur GI? (I regularly have to have this done.) Good luck! [ more ]
ncsowers I will do some research on the magnesium. That sounds worth researching. David does see a GI once a year for a check up. He is 2 hours away, but we do stay on top off that. He had a pouchoscopy a year after his surgery and things looked great. He had blood work back in the spring (GI ordered it) and he didn't see anything amiss. I try not to do any unnecessary tests and scopes because it really causes severe anxiety for him. All the fear and trauma of his hospital stays come to the surface... [ more ]
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J-Pouch ForumsGeneral Discussion
Abscess
M MannyG
Jaypea I suddenly developed an abscess with a fistula last December. I do not have inflammatory bowel disease. It took 4 admissions to hospital and 7 ER visits to get the little devil under control. I still have one that is constantly there and I will deal with it when I get back from my beach holiday! My surgeon has no idea why I have developed this problem. I do know that when I take care of myself (good diet, enough sleep, control stress) things get a little bit better. [ more ]
Scott F I don't think spicy food has anything to do with it. We have a few reasons to be more prone to peri-anal abscesses: 1) we have an ulcerative disease, and any one of those ulcers can get out of control, 2) we have had surgery in the area, and surgical sites don't always heal as we'd like them to, and 3) some of us have undiagnosed Crohn's disease. [ more ]
AARON Probably because of the acidic juices burning holes into our anal area. Just my guess. And then fistulas can develop. My surgeon said people who eat a lot of acidic and spicy food are more likelier to develop an abcess than those who eat a blander diet. Does that make sense [ more ]
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J-Pouch ForumsHelp! Need advice now!
Chronic pouchitis, losing hope
E Ellie186
JJA Here is a link to the article: https://www.researchgate.net/p...ngement_of_Pouchitis [ more ]
laludy Don’t give up please there are other ways. I was pouchitist and I used antibiotics and used Imuran. I used Imuran for 6 years and I was perfect. For 1 year I am not using it and I got pouchitist 3 times in one year. Now I have to use it again. Your situation can be like this. Antibiotics are not always enough. Don’t loose your hope [ more ]
JJA Don't panic-you have many options! this is a great article with a decision chart for treatments, and it was written before biologics-there are at least 3 (maybe more) biologics like remicade, humira, Entivyo that can be tried once the suggestions in the article/chart have been exhausted. I had good response from cortsteroid suppositories and budesonide, but could never seen off them. Rotating antibiotics (flagyl and Cipro didn't work, but I do 2 weeks on Levoquin and tthen 2 on xifaxin)... [ more ]
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J-Pouch ForumsGeneral Discussion
Seton for anal/vagina fistula
Stephaniesays91Stephaniesays91
Stephaniesays91 They are starting to suspect I perhaps have Crohn’s disease unfortunately! However I’m a student nurse and if I go on immunosuppressant drugs I am not allowed to continue so I’ve been refusing them for now!! What crap luck! Quite literally haha!! Thanks xoxo [ more ]
laludy One week is enough. I have two setons. If your pouch is fine your fistulas are fine. You better find what causes your fistula. I had one and drs do not find the reason. One year later I had the second one. Please take your precautions. I used Imuran and no fistulas ever. Good luck �� [ more ]
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J-Pouch ForumsHelp! Need advice now!
Just had lots of trouble after eating a salad.
A AARON
JJA 2 decades in and raw, fresh veggies/salad cause me issues-not exactly like you indicated, but they go through me fast and lead to very watery stools (with lots of undigested bits). Too bad because so love them. I still eat them but have learned to pair them with a carb and maybe also a protein as with a balanced meal (rather than exclusively raw veggies) I don't have trouble (lthoigh still see the I digested bits later!). [ more ]
skn69 Its a hit and miss sort of thing with me...Sometimes it goes through easily and sometimes it blocks up everything...I have found no rhyme or reason for the whats and whys...This weekend I made myself a pound of caramel walnut fudge and at it all (rolled in walnuts) and had no problems, other times 2 walnuts and I am cooked. Chew a lot, stick to soft food for a while after any irritation or semi-blockage... Be kind to yourself and don't overdo it for a while (chicken soup is my go-to friend... [ more ]
Annikki Start slowly with small amounts. It takes time for our bodies to adjust and what you can't eat now but be no issues in the future. [ more ]
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J-Pouch ForumsGeneral Discussion
Intense rectal bleeding with J-pouch - ER or wait?
V VHDan
Scott F VHDAN, it's very hard to estimate blood loss accurately in a toilet bowl. Nevertheless I understand your concern. The general rule is that lower bleeds (in or near the pouch) would be bright red, and upper bleeds (esophagus or stomach) would be dark or even black. Since you haven't described major pain, you might have something like a small ulcer over a small artery. Ordinary blockages don't usually bleed. Hopefully the Cipro will quickly reduce the inflammation and allow your bleeding... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need a GI !!
KennyJG44KennyJG44
KennyJG44 Thanks both of you....I guess since I've only ever seen my NYC surgeon (Bauer), I've become pretty protective over my pouch and new setup and have concerns (legitimate or not) about 'outsiders' getting involved. But I take both of your points - I will see a locally referred GI this afternoon and see what he has to say. Of course, my symptoms are mild this morning (isn't that always the case). Unless he has extensive J-pouch exp, I think if he wishes to scope the bottom, I might revisit the... [ more ]
Jeffsmom As Scott started not everyone in NYC is competent. My son sees a surgeon in NY who is awesome. But he also takes our insurance. Unless your surgeon is paying your bills, I'd see someone who takes my insurance. No since you work at the hospital, you will most likely get good care. Seeing someone who doesn't take insurance is a very risky thing. My son's bills over the last 3 years are over one million dollars, closer to two after this year. And it was all covered by our insurance. If you... [ more ]
Scott F In many parts of the country it's impossible to find a GI who is familiar with J-pouches. Just because you're near New York City doesn't mean that the folks who chose to practice in the city will be better for you. Why not see your local, knowledgeable GI and see what you think of him? [ more ]
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J-Pouch ForumsGeneral Discussion
Obstructions
S SteveRM
maddie18 I have seen an osteopath doctor for the last year and she has helped me greatly. She has manipulated my abdomen manually and has put me on super enzymes that I take after I have eaten a full meal. I have also become gluten free for almost a full year. I have made bone broth on a very regular basis. I find that when I stop drinking bone broth I tend to obstruct. Bone broth and a diet that is gluten free helps with inflammation. She says that a leaky gut can cause obstructions due to toxins... [ more ]
Scott F I don't know all of the other causes. We've heard from folks here who get blockages (or things that act like blockages) from causes like overdoing bowel slowers, constipation, ileus, mushrooms, quinoa, big salads, and (perhaps) dehydration. And some kinked bowel from an adhesion can contribute to those, too, so it's difficult to sort out. Particularly if you aren't experiencing complete obstruction (which might result in vomiting, intense pain, and dehydration), any other causes should be... [ more ]
SteveRM Scott I am not sure what the other causes of blockages could be. Do you have some other ideas? Elmer Thanks, I will keep that in mind. I am got an appointment with my original CR surgeon in Houston and I am sure he will do it. I just wanted to stay local so I was looking at other surgeons. [ more ]
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J-Pouch ForumsGeneral Discussion
Diagnosing fistulas
SaffSaff
Jaypea I had abscesses and fistulae diagnosed with MRI scans last year. They found even very small ones. They needed operative repair. My last incision and drainage was in March and the darn abscess still has not healed. It is only a little sore but is very annoying. My surgeon does not think I have Crohn's disease. [ more ]
Scott F Finding a fistula does make Cron's more likely, but Crohn's isn't the only cause of fistulas, especially at a surgical site. This is from the National Institutes of Health: Most gastrointestinal fistulas occur after surgery. Other causes include: *Gastrointestinal obstruction *Inflammatory processes, such as infection or inflammatory bowel disease (most often Crohn's disease) *Radiation to the abdomen (most often given as part of cancer treatment) *Trauma, especially penetrating wounds such... [ more ]
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J-Pouch ForumsGeneral Discussion
B12 injection
C CandiceT
Winterberry Candicet, when you get in to see your specialist about your colitis, ask if he / she also do a blood work up. If not, then your general practitioner can give you a full physical and bloodwork. Your body is telling you it's time to get a full work up to put your mind at ease or to find out what is causing the body aches and exhaustion. Easier to treat a problem while it is still small or minor. Did someone tell you that you need B12 injections? [ more ]
CandiceT I'm not luckily. But thank you [ more ]
Paul H I'm pretty sure Cipro interferes with the B12 blood test so if you're having a test & are on Cipro stop for at least 24 hours prior. I have injections every 2 months, GI says for life, last test was 300ish. [ more ]
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J-Pouch ForumsGeneral Discussion
Infection cause vertigo...
H Halo52208
jeane I have constsnt ringing in my ears. Have not been diagnosed with meiners. I just attributed it to nerve damage from two years plus in and off cipro. Never linked the infections to ringing but I have numerous pouch issues w cuffitis and pouchitis often. I also have severe tailbone pain and dry nose constantly from Ibeing tied to the toilet and constant dehydration. [ more ]
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J-Pouch ForumsGeneral Discussion
colon cancer
palm55152palm55152
Scott F You could possibly have external hemorrhoids, which can be painful and feel very full at the exit. That wouldn't explain your back pain, which might be unrelated. [ more ]
palm55152 I had colon ca 32 years ago and had an ileostomy reversed. I have colon and stomach tests at least once a year, I still get polyps. however now I have horrible pain on the outside of the rectum which has caused me to miss many of my activities.. it is also hard to stay out of the bathroom. oxycodone has saved my life. I have another colonoscopy which will be set up and will happen the beg of nov.. I have never been so scared. at my age ( 72 ) I do not want more surgery and I certainly do not... [ more ]
Scott F Palm, have you had a doctor look at it? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help - Advice on Possible Surgery
temotytemoty
temoty I'm surprised nobody here seems to have had a bowel resection done? Is it a rare procedure for us j-pouchers? It's been really hard to find anyone to talk to about this. [ more ]
temoty Yes, I'll try that suggestion for sure. Thanks [ more ]
Winterberry Hello, Temoty. Tell your surgeon you are very anxious about the surgery and ask if you can talk with patients who have been through this particular procedure. If your surgeon is suggesting it, he / she likely has performed this surgery. Some surgeon's have a list of patients who are willing to be peer patients, or peer support, to any patient (of that doctor's) considering the surgery. I talked with three peer patients before my big surgery. I was very anxious what my new life would be and I... [ more ]
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J-Pouch ForumsFAP Forum
Kidney stones and surgery for FAP
E Evan
skn69 I wouldn't have believed it if they hadn't told me about it and the fact that he sort of guessed which neighborhood that I lived in was freaky...they have statistics according to the neighborhood... Spring water is fine, even if it has a minerally smell it could just be iron, which is pretty common in Well water and spring water depending on which rock formations it flows through... I have been filtering since then and have a built-in filter in my fridge too..ditto for hubby and what he... [ more ]
BillV Thanks for the heads up on water, Sharon. We live in the northwoods of Wisconsin and get our water from a well that is 825 feet deep in bedrock (long story). I guess that I have been lucky for the 7 years we have been here and drinking the water that has a distinct mineral taste that I hardly notice anymore. Although I had a kidney stone attack when living in Milwaukee, I have had no problems since, but do drink quite a bit of water. Undoubtedly, some people are more susceptible to kidney... [ more ]
skn69 Evan, Kidney stones seem to be a major problem for many of us...I had my first bout about 20+yrs ago...thought that I was dying...Didn't know that that sort of pain existed. The first thing that the ER doc asked me was where I lived. Then he told me that I was in a hard water district and to stop drinking or cooking with strait tap water and to start filtering it with a Brita sort of system. Immediately. He also told me to stop drinking mineral water (duh) due to the mineral content (double... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Belly pains after all this time...
KennyJG44KennyJG44
KennyJG44 Hey V - sorry to hear of your misfortune! It is unfortunate that we have to deal with issues such as these after all we've been through, but that is life! My 'symptoms' have changed somewhat since I originally posted, but I do still have a lot of heartburn/indigestion and bloat on demand when eating. And I do have some nasty cramping. I think I have adhesions giving me issues. I am fortunate to have no issues 'down below.' I think your surgeon will need to have a look at the pouch to rule... [ more ]
Vergie Hi Ken i too have started with the same issues. My original surgery was 2011. I recently (July) had to have scar tissue removed due to constant obstructions. After the surgery I have tremendous heart burn, pain in belly that I have never experienced before. Now I am having blood in my stool and an anal irritation that won't stop. I also see my surgeon not a gastro doc. This has been a trying time for me as I know it has for you too. Take care and good luck. V [ more ]
Scott F You could try self-medicating with something like Zantac or Prilosec to see if a few weeks of that helps. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Gas
T Tiara
skn69 Have you considered gallbladder? It could be that or gastritis... Do you still have your gallbladder? Sharon [ more ]
Former Member Tiara, Do you have allergies? Or maybe a case of the flu? This always occurs to me whenever my allergies have a flare or if I get a common cold. Under all the circumstances of the pouch & me having seasonal allergies, this always does this to me - sick - gas - vomiting. [ more ]
Tiara This has been happening for about 2 weeks and I'm still pooping , not sure why this is occurring I'm thinking maybe gas or food that I have eaten [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
good g.i. docs in NYC
S scallop
AllyKat I'm at Jill Roberts as well [ more ]
rlblife I am with Dr. Mark Chapman at Mt. Sinai, but he is a little older, so if you think someone younger might be better, Dr. James Marion is great- anyone really is fabulous: they have an entire amazing IBD center there with doctors, nutritionists, surgeons if you need them, etc (ranked #5 best GI center in the country after of course Mayo, Cleveland Clinic, etc.: https://www.mountsinai.org/ibd-center [ more ]
AllyKat I'm at Jill Roberts as well [ more ]
See all 7 replies...
J-Pouch ForumsPouchitis
Natural Treatment for Pouchitis?
FM Former Member
AllyKat You need to take at least 1600 mg of turmeric I take between 2000 -3000 don't take more than that [ more ]
Sophia Sauzier Does Tumeric good for pouchitis? [ more ]
Former Member Thanks for your replies guys! And just kind of a little more info, I rarely get the pouchitis, this might be like the second time I've gotten it and my doctor didn't seem too worried. She just gives me the two weeks of Flaggyl and that cures it up right away. This past time I had it a few weeks ago and it recently started coming back so I got worried but I remembered I didn't really take the full two weeks of Flaggyl, I stopped. Which probably bit me in the butt lol but I 'finished' it and... [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
Never feeling better
JB Jordan B
AllyKat I felt that way as well I'm doing good on Entyvio I hope u find something that works [ more ]
Scott F Good luck, Lauralee! [ more ]
LauraLee Hi Scott, I was waiting a few days before to write about my Pouchitis and the meds I'm using. I talked to my GI again and he said I should give another chance to Cipro and I did. The results are good so far, started them five days ago. My biggest issue is I'm working out of the States for a month, and is complicated to get antibiotics without seeing and specialist here and I don't know anybody, but luckily I brought some Cipro (I'm like a mobile pharmacy every time I travel) and seem to work... [ more ]
See all 9 replies...

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