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J-Pouch ForumsFAP Forum
dismoid tumors
ksrksr
turfherder Was diagnosed with FAP t age 50(go figure) through the VA. I was recommended to have a total colectomy in 02. They sent me to LA for further tests and becauseI was older than what normally live with FAP they told me I didn't have FAP. Fast forward 10 years and they remove 5-600 polyps every six months and finally ave Jpouch surgery in '12. They've done genetic testing and my daughter and grandson tested positive also. I too have three Desmond tumors. Two on my intestines and one on my... [ more ]
Chuckus My father wasn't in Vietnam, so no connection there; though he was in the service and I "think" there IS a connection somehow, someway to that........... You ask how do I know I'm the last in my family..........my father didn't have it, he's deceased. My mother didn't have it, she's deceased. My sister didn't have it, she's deceased. My nephew doesn't have it, he's alive. I have no children (biologically) of my own.......and no one else in my extended family has it. I am 100% a spontaneous... [ more ]
ksr Chuckus, Was your father in Vietnam? My father was in Vietnam before I was conceived. I have always thought that my FAP and Agent Orange was connected. How do you know you are the last in your family to have FAP? I too have a vitamin d deficency. Do you take anything for it? I take 5000IU of Vitamin d daily. KSR [ more ]
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J-Pouch ForumsGeneral Discussion
Has anyone, with a J-Pouch, had knee replacement surgery ?
TD Trudy DiNardo
Rockwall63 Trudy, I had bilateral total knee replacement back in 2009. At that point, I was in my pouch's 23rd year and was 46 y.o. As I had both knees done simultaneously, my mobility will be less than yours. That said, expect that you will have an accident or two. You'll be fairly zoned after the surgery so you might not be able to control your sphincter/bowel movements like normal. The meds will play a role as well -- hard to predict ... they might slow you down, but also decrease control. Net,... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Struggling after infertility diagnosis
S Sweetie1234
TE Marie Regarding age My husband's parents were 37 when married and went on to have 4 healthy son's in 7 years. They obviously didn't have fertility problems. IMO if you are at the time in your life that you desire children go for it! [ more ]
Angie Wilson Congratulations!!! So happy the IVF worked for you. It never did for me, but that was many moons ago (the late 80s)! I think they've gotten a lot better at it now. Sorry for your one failed pregnancy and here's hoping this one goes really well and you have the baby of your dreams! So happy to hear success stories! [ more ]
koolfsuchic I'm 37 and 12 weeks pregnant via IVF. Definitely not too old but I completely understand the 'clock is ticking' feeling. I felt the same way and still do believe you me. We started trying 2 years ago. We had 1 failed pregnancy on our own and then we decided to do IVF. Its proven to work. I would definitely give a try. [ more ]
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J-Pouch ForumsGeneral Discussion
myofascial release for a partial obstruction
M maddie18
Jan Dollar Diversion= diverting ileostomy Jan [ more ]
TE Marie I still have abdominal pain even after switching from using my j-pouch to a permanent ileostomy. I didn't have my j-pouch removed but am not using it any longer. Removal is a major surgery that I hope I will never need. You are right the x-rays, CTscans and barium x-rays I had done over the years didn't the tell much about adhesions. The only thing the barium one proves is if you have a kink, loop or stricture inside. They can cause obstructions and they might be caused by adhesions. Since I... [ more ]
maddie18 You say you are still in pain, why? What do you mean by you wish you had the diversion 18 months eearlier? What is diversion? I have a ton of adhesions, xrays are hard to read. Thinking two opinions are enough considering there is not much else to do but remove them so that I can return to a somewhat better way if living. [ more ]
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J-Pouch ForumsGeneral Discussion
Possible Peristomal Hernia or not....More confused
C Crazy1
Crazy1 Thanks for the reply. Yeah, it is weird. I just seen a surgeon locally today, and he concurred with my G.I doctor that there was no hernia...I didn't mention what the Cleveland Clinic said, until after I seen what he would say. So now I am really anxious bc I have no clue. I have an M.D G.I doctor saying No, a CT showing nothing, and now a surgeon, who I spent relentlessly asking lol. He then brought me back, and showed me the CT bc I kept asking. The reason why I am concerned is bc if I do... [ more ]
skn69 Not all hernias cause pain...I had a couple of peri-stomal hernias...no pain but my stoma (k pouch) got very loose and then my valve popped out. Nothing showed on x-rays, CTs or any other exam...it was the results that showed the problem. No advice or opinions...I would most likely trust the C.C. doctors and nurses' opinions... Sharon Good luck [ more ]
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J-Pouch ForumsGeneral Discussion
Accupuncture for obstruction
M maddie18
GraceB I tried acupuncture for the same reason and I agree with everyone that is good for relaxation does not cure adhesions or scar tissue. I find that I just have to watch my diet and what I eat. I don't eat anything that is going to cause me pain and chew what I eat very well. I hope you feel better Grace [ more ]
Spooky I agree with other posters, in that acupuncture would not in and of itself remove a physical obstruction or break up adhesions. However, there may be some benefits from relaxation and pain relief from obstructions or adhesions, especially if this is frequent for you. If you are looking for alternative treatments, there is some documented merit in ART massage (active release techniques) in softening or breaking up adhesions, but you would have to find a qualified therapist, particularly one... [ more ]
maddie18 I was thinking it may help to relax the bowel so that Iit can untwist itself. I have triex myofascial release by a massage therapist but it didn't help. He said he was qualified but I am thinking he just winged it. Going to see osteopathic doctor for my next try at it. Thanks for your input Jan and DG! [ more ]
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J-Pouch ForumsOstomy & Skin
Barbie Butt But Burning Sensation
LambiepieLambiepie
Lambiepie JLH, I asked him if I did anything wrong, didn't clean well enough, etc....he said no, that there could be a tiny opening in the rectal incision and it could fester for awhile. He cultured it and ordered Cipro. It's really ok, it was one day of pain and at least I know why. I get only the minutest amount of phantom feelings and rarely at that, if I'm really full! Aside from this abscess, I've never had pain. What a blessing! [ more ]
JLH lambie did the doc have any explanation as to why you developed the abscess? is it an infection and is so where? so sorry you had to go through this. i've gotten off easier with the phantom reactions--no pain, just strange feeling!! be well, jlh [ more ]
Angie Wilson So sorry your Barbie butt hit a glitch and I'm glad you found a fast, relatively easy fix. Fosty - I will be thinking of you as you revert and hope it goes as easily as possible. I tend to think things will be awful, and that way, I'm pleasantly surprised if they are easier. This is after years of "oh, it won't be too bad" and then it was bad I just try to be realistic and I find procedures and ups and downs are a bit easier to take from an emotional standpoint. Let us know when you are up... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Noisy BMs!
ShylockShylock
Angie Wilson Rachel -Good for you!!! You have a great attitude- maybe I will get there one day! I just feel like my privacy is being invaded - but I wish I was like you! I know my father, who is now 80 and got his pouch at 50 does not care a bit about it. He lets it blow wherever he is and doesn't give a shit My sister and I do care. One of my best vacations was with family years ago - we went to this little cabin up in islands off Seattle - it had an outhouse. I LOVED it. It was quite a distance from... [ more ]
Angie Wilson Shylock - I'm like you - I just would rather not have explosive gas and poop that blows all over the toilet in public RRs. Others seem to have no problem with it - I think it's very personal and I think a bit harder for women than men - but I could be wrong. You should feel zero guilt for using disabled RR. None. When I was working in schools for years, I would go walking around the school to try to find an RR with no one in it....sometimes successfully, sometimes not. I would not eat much... [ more ]
Shylock Thank you for your responses! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch takedown diversion colitis bleeding
E elooney
Angie Wilson All these stories make me think as I age I need to move to Cleveland. I so hope ELooney that you are getting help and/or feeling better!! [ more ]
Pouchomarx several months ago I did have ALOT of bright red blood in the toilet, it looked like when I had UC. I got a scope with Shen the following day and it was really bad diversion colitis, as Shen thought. He sedated me and scoped and sprayed glucose in there and actually put a tampon in my butt. Told me to remove it in 24 hours, which I did and it was all gone. several months later I ended up getting my pouch redone by Remzi due to the sinus and tip of j pouch leak that I dealt with for 2 years. [ more ]
Jan Dollar I haven't had it, but do go to the ER if you are feeling weak or dizzy. Hopefully it is just bad pouchitis, but you could have an ulcer that eroded into a small vein. It could need to be cauterized. Jan [ more ]
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J-Pouch ForumsOstomy & Skin
New Milo Convex
AllyKatAllyKat
Lambiepie I use "Skin Barrier Ring Conforming Seals." They turtleneck around the stoma and provide a snug fit. I use those and I went down an eighth of an inch in size in my bag opening and my skin has never looked better. No skin breakdown at all. I came to this system ten months after my surgery so it pays to keep trying new products until we find what works for us. [ more ]
Fosty Thanks again Richard !! �� [ more ]
Mysticobra Fosty. Worry will be there. Until you are done. I had my pouch removed November 9th. Almost two months now. I worried like crazy. I had a horrible night mare experience getting the pouch. This surgery was so easy compared to that. And that was what I was worried about. All that I went through to get the pouch. I had nothing but pain.. Urgency... And of course like you say how am I gonna do today? It was still painful but for only a week... Or more.. And it calmed down fast. I was so... [ more ]
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J-Pouch ForumsGeneral Discussion
Diet suggestions just after takedown... immodium and VSL#3..
PouchomarxPouchomarx
Pouchomarx I don't know why Shen does not recommend it any longer? I will ask him next time I see him... I was told this by Dr Remzi's nurse. I get reconnected on March 7th so I am sure I will see Shen afterwards...well I hope I don't have to see him, which would mean issues.. I had mild pouchitis with last pouch but Shen said it was most likely being caused by the sinus I had... Lets hope [ more ]
Scott F If you get recurring pouchitis then IMO VSL is well worth trying, to see if it reduces the frequency or severity. I think it kept me off antibiotics for a couple of years, which was well worth the expense and nuisance. If you're doing fine without it and rarely get Pouchitis then it's probably not worth the cost. [ more ]
AllyKat What is Dr Shen recommending? Nothing or a different brand? I too am wondering if it's really needed. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Doctor Needed
ChrIssy25ChrIssy25
mary beth Hi Chrissy, I was searching for a doctor in my area and this post came up. My 18 year old daughter has a jpouch (UC - takedown March 2015). We live in Fenton. She had her surgery at U of M. I love her surgeon Dr. George Mychaliska but he's a pediatric surgeon as she was 17 at the time. We have seen a few GI's there but so far haven't been too impressed. I'm sure there are very good ones there, it's one of the best. The one she has now is very young and inexperienced so thinking about... [ more ]
Scott F If you can find an internist in your new community (perhaps recommended by a friend, family member, or colleague), he/she might be able to help you find someone at the university. The easiest time to ask is during an initial "getting to know you" appointment. [ more ]
ChrIssy25 Originally Posted by cbjonice: If you are able, might want to try the University of Michigan. I heard they have some quality IBD specialists. Sorry and hope you get relief Thank you. Appreciate you taking the time to answer. Do you know if a person just calls the University of Michigan or must you be referred? Once again, thank you for taking the time to read and respond. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Burning Barbie butt
LambiepieLambiepie
Lambiepie You are wonderful with your replies and I am so grateful for them. The plot thickens! I woke up to messy pj bottoms and immediate relief, so I suspect an abscess was right on the money. I will see surgeon but I feel so much better as my pj bottoms are cleaning up in the washing machine. Thank you all! [ more ]
Jan Dollar I agree with Scott. Sounds like an abscess. Taking Percocet is fine. But if this pain really escalates, go to the ER to have lanced. Jan [ more ]
Scott F The hard, swollen area sounds like a possible abscess, which also fits with the worsening pain. I'm glad you're seeing your surgeon tomorrow. If my guess is correct then it is helpful that the location is obvious. Relieving the pressure of an abscess by draining it with a needle (or a small incision) can bring immediate relief. Please let us know how it goes. [ more ]
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J-Pouch ForumsGeneral Discussion
Probable reversal
heverhever
hever Hi Scott, sorry only just seen your post. Had my appointment with the specialist, its now been decided to have yet more tests before a decision is made. Got so sick of the run around,not being able to get better pain killers for the rear end its not a joke! When the registrar tried to get me pain killers the computer wouldn't allow it, she went to see her boss but no the computer still blocked it, pretty pathetic!! Then they said I'd have too see a pain specialist, decided to take some... [ more ]
Scott F Heather, I know nothing about Medicare in Australia, but I'm pretty sure they have a method (however flawed) of assigning "qualified" surgeons to cases. In all likelihood, a surgeon can declare himself untrained for a particular procedure. If you (politely) quiz the surgeon about how many pouch removals he has done, you have a decent chance of getting routed to someone with the necessary experience. No surgeon wants to risk a bad outcome if they can be obviously identified as unqualified. [ more ]
hever Good Idea AlleyKat, I will go the on the ostomy forum. Thanks . Scott I hear what you"re saying about an experienced surgeon, and in its creation of the J pouch I feel I had the best surgeon available on the Gold Coast, or probably in Queensland, unfortunately he has retired. Due to UC I could not join a medical scheme here in Australia, not one of them was prepared to insure me so I have been left the lap of Medicare. I am very grateful to the Australian Health Care Systtem, but being a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Crohn's after J -Pouch surgery-Symptoms
Sabina1107Sabina1107
deweyj I have not been there myself, but from what ive read from many others is that the GI known as the jpouch guru is Dr Bo Shen. I believe the surgeon who he often works with is Dr Remzi. good luck. [ more ]
Sabina1107 Is there anyone who colud help me to contact the best doctor for J-pouch surgeries at Cleveland Clinic ? Thx [ more ]
Sabina1107 allykat,we already contacted acibadem clinic,since they know what's happenning since July 2015.But thanks for your help. :-) CTbarrister,u are right.It is scary without insurance,but we are working on that.I hope we get some help (financial) before we get there.It depends on our doctors.If they sign that they can not help us anymore,our country would cover maybe 10-20 %.But if they don't sign it,we have to pay everything. [ more ]
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J-Pouch ForumsHelp! Need advice now!
cramping in abdomin
ksrksr
JenJen I have been having similar problems since my total colectomy 5 years ago. I was hospitalized for a handful of blockages and then had surgery for the last major one (ICU) which included component separation surgery to repair a large incisional hernia. The blockages have never gotten as severe since the last surgery 2 years ago, but I still get the symptoms you describe. I get the same feedback from the medical community that this is really "par for the course" given our altered anatomy and... [ more ]
ksr 4 of the operations were done in 1 year and 8 months! That about did me in! [ more ]
Mysticobra Ouch.... 7 surgeries.... I've had four in two and never want it again. Hope you get it figured out without surgery. Richard. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Takedown surgery scheduled for January 28
HaidalynHaidalyn
Haidalyn Thanks so much you guys. I am so grateful for this forum. It was a godsend in those dark days post surgery and I am sure will continue to be. [ more ]
deweyj this is why you went through the first two surgeries! you'll be ok. given the complications the first two rounds, the takedown might very well seem a walk in the park by comparison. and if anything arises youre here so you can tap into the vast body of experience available. good luck! [ more ]
Scott F There will be a recovery and adjustment process, but in general your output will be thicker (especially if you take soluble fiber), your diversionary Pouchitis will be cured, your absorption should improve, and in all likelihood you'll (over time) get to 4-6 BMs per day. You really do need to find some help for a few weeks at least, though. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Great Video on Biologics
Sonoma-ErinSonoma-Erin
Jan Dollar Finally got around to viewing this informative video. Thanks for sharing, Erin! I had a pretty good understanding of biologics, but found the info about the differences in approval for biosimilars between Europe and the US to be most interesting. While I don't have an issue with manufacturers recouping their R&D costs, the US was way behind in the laws for approving biosimilars. So, yeah, another reason to be thankful for the ACA! Jan [ more ]
aka KNKLHEAD Wow, who'd a thunk? The Affordable Care Act (Obamacare) helped to get abbreviated approval of biosimilars. Thank you for posting, it was a bit over my head, but interesting. I learned a bit today! [ more ]
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J-Pouch ForumsGeneral Discussion
White watery mucus (non smelling) sometimes tiny specs of blood
Anthony GambleAnthony Gamble
Anthony Gamble Yeah i understand what Sharon means, after surgery sometimes people can develop fluid inside the pelvis which is my case (mine is posterior of the pouch, which is difficult to drain). It became infected. I took action again after the first course of antibiotics didn't kill it off completely. I am currently in hospital on IV drip of antibiotics to help clear the infection, hopefully it clears up and I can recover in time for my takedown at the start of April. If not the surgeon said I will... [ more ]
Pouchomarx did you mean the mucous is draining from your butt? that is normal, not sure what Sharon meant by behind the pouch and abcessing??? [ more ]
Anthony Gamble Thanks Sharon, day 3 of antibiotics and chills seem to be less intense. The surgeon said sometimes one bout of antibiotics is not enough [ more ]
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J-Pouch ForumsK-Pouch Korner
Flagyl and neuropathy
B Bodoni
skn69 Is it reversible? Once you get peripheral neuropathy is ith permanent? Sharon [ more ]
Angie Wilson I feel so dumb asking this again - asked it on another thread - I have taken some anti biotics off and on thru years - but not all that many. I am wondering if maybe with my symptoms if I would do better taking more of them. I've always been "tough it out" or "stay home more" - in terms of dealing with issues rather than take more drugs - but maybe I've been too cautious and could have gotten more relief over the years. Jan- thanks for a great explanation about neuropathy and ways to look... [ more ]
TE Marie I was took flagyl in much larger doses for c.diff in my colon and also in my j-pouch. I was rotating it and Augmenten every 2 weeks and noticed my peripheral neuropathy in my feet got worse when taking Flagyl. I quit taking it and rotated with Xifaxan instead. I can't take Cipro either. I already had peripheral neuropathy so it didn't cause it. Just made it worse. Things were like Jan explained above. I hope you are feeling better soon. [ more ]
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J-Pouch ForumsGeneral Discussion
Saw a Surgeon
MatteZMatteZ
Angie Wilson As a 30 year poucher, the fear does go away. As you face each issue (and for me there were many times when things were going really well - especially when I was young) - I lived without fear. Even now, as the pouch has gotten a bit less reliable - I still don't live in fear. But, I do make plans differently now and I choose not to do certain social activities where I will have to be with a group and no rr privacy - for example - a club I'm in had a weekend retreat - shared RRs in a camp like... [ more ]
Scott F Matt, I discussed with my surgeon just removing the bad section. It wasn't at all clear what sort of a result I would have had without a rectum. I don't know if they were doing colonic J-pouches in 2002. In any case, as DeweyJ points out, the lifetime risk of colon cancer for someone with UC is extremely high, and I got everything done with one procedure. [ more ]
TE Marie Lots to consider. I know many that had colon cancer and just had it and comfortable margins on both sides removed. They didn't remove their entire colons. Their recovery was faster than mine was. Most j-pouchers don't have problems that we discuss here. [ more ]
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J-Pouch ForumsPouchitis
Long term flagl/Cipro dosage?
Stephaniesays91Stephaniesays91
Jan Dollar I have no alcohol/Flagyl side effect either. Wine, beer, even liquor. I get the metalic taste, but it does not cause me big problems. Just the funky taste. Jan [ more ]
deweyj whoa youre able to drink one let alone two on that dose! amazing. my first experience with I think a week's worth of Flagyl after my first pouchitis led to the worst and most exhaustive vomiting experience of my life by sipping a beer the night I finished my dosing. I remember that so vividly that the prospect of even a hint of alcohol scares the bejesus out of me. interesting and glad to hear youre able to enjoy, not to mention avoiding the seemingly inevitable nausea. do you avoid the... [ more ]
Pouchitis Paul I've been on 500 mg / day of both Cipro and Flagyl for over a decade. At this dose, the pouchitis is stable but always active. When I lower the dose I tend to flare. I take the pills just once a day - in the morning - which allows me to have a drink or two in the evening if I desire, without any nausea from the Flagyl. [ more ]
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J-Pouch ForumsOstomy & Skin
First blowout....
LambiepieLambiepie
Lambiepie Haha TEMarie, definitely wear them! I've used an earring more than once for repoking a hole in my EZ Osto vent, but never for the bag opening itself. I guess I am like MacGyver!.......I never sensed an odor even with the warmest, most liquidy output but I do have bag covers, probably the same as the ones you're using and I love them. I've gotten lazy lately and haven't put one on in awhile but your comment reminded me how much I like them. So soft and pretty. [ more ]
TE Marie Bravo! I need to start wearing earrings again. Something off subject a bit. You mentioned the warm feeling and I had a problem with the bags heating up against my skin. It smelled to me. Same way with bag filters. I found a solution that helps against the smell and adds another layer of protection, Ostomy bag covers. I buy them off of "etsy". There are several vendors. I pick out different fabrics and they are sent no postage, from the lady I buy from, in a small heavy duty envelope. I've... [ more ]
Angie Wilson You go girl!! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Bowl movement after cesarean?
L LoveLife
LoveLife Update: We first went home December 30th, but was the re-admitted January 1st because I was in severe pain and I threw up. My personal theory is, that I was dehydrated, which put my stomach out of function and then came the pain. Now, finally we came home again yesterday. I am still in pain and my GI is conserned, that the new stenosis is causing problems because it is so close to the old one. Complicated, indeed, but I am home with my beautiful son, so things have to work out for the better. [ more ]
Sonoma-Erin I hope that everything went well. I had problems with my first C-Section and the GI doctors had very little information for me. It turned out that the surgeon who created the J-Pouch was amazing at knowing exactly what to do. I now consult him first via email whenever I have issues. I think our cases are often just too special for standard GI doctors and local surgeons to tackle. Congrats on the new baby and give us and update know how your doing!! [ more ]
LoveLife Thank you, every thought counts. Yes, it was planned, and yes my baby is wirh me. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy C section and 28 week Pain
S seen
Sonoma-Erin I had the same scenario, no GI surgeon present but one on call and alerted to the date and time of my c-section. Yes, lots of the same pains and stretching tearing feelings with both my two pregnancies. C-Section was my decision both times, the high risk OB said I could vaginal if I wanted but 3 ladies in my group did vaginal and all three had some kind of issue. Two with new or worse leakage and one tore the pouch off the wall and had to have it reattached. Also my actual surgeon said risk... [ more ]
lholdem I had a low horizontal incision from my bowel surgery that they reused for the c-section. It just made the scar a little wider. It remains to be seen if they'll use it a third time. [ more ]
LoveLife Not a dumb question at all. My birth doctor checked my scars out to determine whether they could go through one of them instead of adding yet another one. Unfortunately she cannot use my old ones because of where they are placed. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
30 weeks pregnant lots of braxton hicks
R reneehow1
Sonoma-Erin PS- Since we are just two weeks apart feel free to message me and we can keep in touch and be due date buddies! [ more ]
Sonoma-Erin My first pregnancy I had no BH contractions but had tons of stretching pains and tearing feelings due to the scar tissue. I was classified as level 2 high risk so I have to see a high risk here in my area and the super high risk guy in San Francisco a couple hours away. I was told that generally about 50% of women with Jpouches will have their baby 2-3 weeks early due to all the scar tissue and about 10% will go between 32-35 weeks. It was decided that after 32 weeks I get twice a week NST,... [ more ]
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J-Pouch ForumsGeneral Discussion
Cardiovascular Disease and colectomies/J-Pouches
RJG-RossRJG-Ross
TE Marie I missed your reply until today Ross. Thank you for your concern and recommendations! I went gluten and dairy free for around 6 months when I still had my colon but had UC. I was under the care of an alternative medicine MD. The diet change didn't help. I was tested for gluten intolerance less than a year ago. My BBF has celiac's but the gluten testing is not what revealed it. It's my understanding that we shouldn't just rely on testing but should also go gluten free for awhile, I think 6... [ more ]
RJG-Ross Hi Te Marie, I imagine they test for enterolactone in the blood stream. But, I don't know who would offer the test... I also have taken high doses of vitamin D; as high as 50,000IUs. But, I've also read that the most effective way of obtaining vitamin D (especially if you have absorption issues) is from the sun. With 50,000 IUs per week, the highest my Vitamin D has reached is 48... I noticed your ailment list... I removed all wheat products from my diet almost 2 years ago and basically... [ more ]
TE Marie No but I take a lot of vitamin D with K, 5000 of D daily. My body doesn't process or accept low doses, they didn't maintain the level suggested by my nutritionist. The bottom of the normal range isn't good enough. I keep mine in the low 50 to 60s range. Thanks for the other information about the Enterolactone information. I doen'the think it is something that I have been tested for. Is it tested by a blood test? [ more ]
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J-Pouch ForumsOstomy & Skin
large distal with loop ileo
PouchomarxPouchomarx
TE Marie I have a permanent one that my stoma nurse thought was a loop as it spews downward vs out of the top. I hope that made sense. It's smaller than my loop one was. Even though it is less than perfect it works much better than my loop. This is not what you asked but I am wondering if the direction the spew is coming out of your current one might be the difference. [ more ]
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J-Pouch ForumsGeneral Discussion
exercise guidelines: pre & post-op
GinLynGinLyn
GinLyn No hernia here. Have just recently started back with Pilates -- seriously could not exercise pretty much at all (even short walks) without pooing myself until about 4 months ago, so have been building up the walking. (I live in the Netherlands, so biking is a normal part of my life as well.) I've been totally fine (a bit sore starting) and am enjoying it again. It is mostly things like the roll ups, v-sits, etc. that I was wondering about. Believe me, I have a loooooong list of specific... [ more ]
Former Member It's difficult to advise of what exercise to do pre or post op as we don't know your current level of fitness, weight sex or age. I wouldn't worry about exercise at the moment; as long as you're fit for surgery thats all that matters; your surgeon would not operate if you wasnt. If your Sugeon was concerned in regard to your fitness and or weight, he/she would send you to an appropriate department to assess your level of fitness and work with you. Currently, your 20 min walk is more than... [ more ]
deweyj ^ yes perhaps the nurse is concerned about herniation- especially immediately after surgery. the surgeon would be your best guide. go in with a specific list of questions, and ensure that he or she addresses them. if you just ask - can I exercise? you may not get a comprehensive set of guidelines. and indeed strength training will help with bone density, bone health. good luck. [ more ]
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J-Pouch ForumsGeneral Discussion
anyone here take Tumeric on normal basis?
PouchomarxPouchomarx
deweyj I don't but I have two friends who have their colons who do. one who believes it has helped his symptoms, another who only recently started. I will have to check in with her. this note about the difference between extract and powder was instructive, thanks for that. and rustedfox props for the help and additional viewpoints. now to actually maybe go out and get some. any preferences for brands? thanks. [ more ]
RustedFox Hey Jo, I generally caution people when they use the phrase "I try to go natural", or use the term "holistic", as there is a lot of confusion about what these terms actually designate. There is this pervasive feeling amongst the public that if its "all natural", then it "can't hurt you". This is a rather large fallacy. Taking an extreme example, snake venom and castor beans are "all natural", and are amazingly lethal. More relevantly, the first maxim of toxicology is: "All things are poison. [ more ]
since1991 ❤️
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J-Pouch ForumsHelp! Need advice now!
Subtotal colectomy
J Jenn
Jenn Thank you, thank you, thank you both for clearing that up. I've been so worried. I know of course that the doctors know what they're doing, I just didn't understand. [ more ]
Scott F The rectum is the end part of the colon. It's 10-15 cm long, so if it doesn't need to be removed it can perform the function of storing up stool, which is what a J-pouch is constructed to do using the end of the small intestine. [ more ]
Jan Dollar If she is having a subtotal colectomy, some of the colon will be left behind. So, there must be a miscommunication somewhere along the way. total colectomy= entire colon removed subtotal colectomy= most or part of the colon is resected total proctocolectomy= entire colon and rectum removed If the rectum is left in place, no j-pouch is needed because the purpose of the j-pouch is to replace the rectum. A redundant colon is where the colon is longer than usual, and can cause excess loops and... [ more ]
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J-Pouch ForumsGeneral Discussion
dr jefferson hurley in dallas
ksrksr
since1991 No but I saw another doc that was cleveland clinic trained! I wasn't impressed! The doctor himself has to have something going on. I'm planning to see a doctor at the Cleveland Clinic in the next couple of months. I hope I pick a good one! [ more ]
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J-Pouch ForumsGeneral Discussion
Getting rid of jpouch
loreen67loreen67
loreen67 Thank you for all the feedback much appreciated!!! Loreen67 [ more ]
BillV Before you call it quits on your j pouch, I recommend that you get a second opinion from a doctor who has lots of experience with problematic pouches. Cleveland Clinic has an excellent reputation for dealing with difficult j pouch problems. If the decision is to have your pouch removed, you may want to consider the k pouch or closely related BCIR, both of which avoid the need for an external bag and have a high rating of patient satisfaction. I had severe anal irritation coupled with high... [ more ]
Lambiepie I'm with Richard. Jpouch gone, permanent end ileo. PM me, too, if you have any questions - I'd be happy to answer. [ more ]
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J-Pouch ForumsGeneral Discussion
Questions about blockages....
M Monkeyme
Scott F Maddie, I have to respectfully disagree with Angie, but only in a small way. Food alone (eaten within reason) will not obstruct a pristine gut. OTOH, we've all had abdominal surgery, and most of us have some adhesions as a result. Most of those adhesions cause us no problems, some cause occasional problems, and occasional ones cause frequent problems. If you get slightly blocked from an adhesion, the food you eat will tend to pile on, causing pain as the gut tries to push it through. I agree... [ more ]
Angie Wilson I wrote to you on your other post. Food/diet can certainly cause obstruction - one of mine was because I ate too much coconut - I figured that out afterwards. Adhesions are definitely not the only thing that causes obstructions - food can do it. There is no magic diet for the pouch - people will give you all sorts of advice, but I've found over the years that what works for one person does not work for another - it really is trial and error. I used to eat tons of fruits and veggies as I... [ more ]
Maddie07 I just had my first SBO a month ago. Since then my gut feels tender. It's like every time I eat I can feel the food moving through my small intestine. I was wondering if obstructions can be caused by food/just diet or are they caused by adhesions? I'm worried about this because I've had my pouch for 7 years without any issues. Does this become a chronic thing? I can't go through losing my quality of life again, I won't survive it. [ more ]
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J-Pouch ForumsGeneral Discussion
Cuffitis and possible Arthritis?
K kdmos75
Jan Dollar Yeesh! Yes, seems never ending, eh? I have both inflammatory and osteo arthritis. My rheumy says that the inflammatory type can cause an acceleration of osteo. Nice! Jan [ more ]
lclassen Just saw the rhumatologist today. She said I've got osteo arthritis. Not related to my past UC stuff. Oh, and she also said I have fibromyalgia now, too ��. Isn't that special? And, probably deficient in Vitamin D... waiting on the blood tests. When it rains, it pours. [ more ]
AllyKat My fingers hurt and other parts of my body. The winter is the worst. Been to a Rhumy, tests negative for RA, just think it's age catching up to me [ more ]
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J-Pouch ForumsGeneral Discussion
Butt Burn explain - advice
P PHedges
Nora S. BWILS: I order the Sensi Care Barrier Cream from Byram Medical Supplies. Best part, my insurance covers it. They call the doctor and do a prescription over the phone! I like it better than any other cream, even Calmoseptine! Nora [ more ]
deweyj props to David for the most entertaining and vivid description of buttburn ever! I'm still laughing out loud. fwiw, you'll have to figure out your preference for diaper rash cream or barrier or whatever you choose to call it. I started using Desitin as that's what my surgeon told me but truthfully the zinc ozide would leave residue everywhere, one time in the hospital they only had A&D ointment and so I was converted. ive also used Calmoseptine but for me don't find it as effective as... [ more ]
bwils Hi Nora, I was originally given the Sensi Care cream at the hospital but cannot find it anywhere and have been using Calmoseptine which works well but I do prefer the Sensi Care. Where do you get it? The only place I can find it is on Amazon. thx [ more ]
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J-Pouch ForumsGeneral Discussion
IRON DEFICIENCY PROBLEMS
JOMJOM
deweyj btw for the record I sense that in spite of the potential link/cause to GI issues, it seems most GI's are loathe to handle iron infusions, manage your H&H counts, and will refer you to a hematologist whose true specialty it is. perhaps because the thought is there are potentially other reasons for blood loss... ideally iron infusions are effective for extended periods, but I have seen some patients who require maintenance infusions for who knows what reason. [ more ]
Maverick Plus I have been having this problem and have been taking a prescription iron pill (ferralet). It's expensive, but it doesn't mess up my stomach like other iron pills do. I'm getting another blood test tomorrow to see if I'm still anemic. (I think I am because the only time I eat ice is when I'm anemic. It's been recorded to be a sign of anemia, strangely enough.) My doc said if I'm still anemic, I will be getting the iron infusions. But she told me that it should keep the iron up for years after... [ more ]
deweyj yes I have H&H issues (Hemoglobin and Hematocrit) , we presume that my strictures are bleeding. I recently found the following article which I found quite informative. http://www.hematology.org/Pati...Iron-Deficiency.aspx I happen to be able to boost my H&H by taking iron pills which while expensive are less so than infusions. I recently finally got my docs to agree to infusions but my PCP informed me that once I started iron infusions, it would render the pills ineffective or maybe... [ more ]
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J-Pouch ForumsGeneral Discussion
Thinking about getting jpouch surgery from Dr. Varma at UCSF or Mayo Clinic in AZ?
F fightUC2
deweyj Dr Varma is my surgeon, although she has never yet (and hopefully never will) slice me. She's got good bedside manner for a surgeon. And as my friend SarahXYZ mentioned she's married to an IBD specialist in the UCSF IBD clinic which is inherently helpful. I see a different GI in that clinic who i think the world of. I have heard various good reports of the work that she has done, in addition to the testimony already mentioned above. But i agree with Jan, why have surgery if you arent there... [ more ]
feistymeow ❤️
PDXDavid Ummmm..... errrr..... you might want to google the term "libel" and edit your statement of fact into an opinion. [ more ]
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J-Pouch ForumsGeneral Discussion
Stomach Flu
AllyKatAllyKat
lclassen Hydrate, hydrate, hydrate. �� And, I will always recommend Metamicil... it helps to bulk things up a bit. The brat diet is also great. Finally, it just takes a little time. I've had those stomach bugs several times with my pouch, and within a week, it's usually back to normal. Hope you're feeling better soon. [ more ]
Scott F I can't tell you how to make gastroenteritis better (except by waiting), but I hope you're paying lots of attention to staying hydrated. [ more ]
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J-Pouch ForumsPouchitis
Why do some work and some not?
H Halo52208
Scott F Good luck with your new GI, Halo! [ more ]
Halo52208 No he gave up on me and then retired. I'm going to the university of Iowa February 9th to a new one. I'm praying he can help me. I just don't understand why some don't have problems and some do. [ more ]
Scott F Halo, you need someone to help you figure out what's wrong first. You're hinting that it's antibiotic-resistant pouchitis, but if all you've used is Cipro/Flagyl you've left a lot of options untried. Do you have a good gastroenterologist? [ more ]
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J-Pouch ForumsGeneral Discussion
Need some input for an undiagnosable problem
skn69skn69
Scott F The symptoms are many and varied, depending on where the schistosomes go. The only symptom that made me even think of it was the (possibly esophageal) bleeding (and the diagnostic difficulty). [ more ]
skn69 Yuck...trying not to imagine it! What are the symptoms? Grasping at straws here. S [ more ]
Scott F Schistosomiasis isn't caught from contaminated food, but rather from immersing part of the body (e.g. Feet) in contaminated water. You don't want to know how the things get into the body. So if she went swimming in the wrong pond... This is not a likely cause, but it's on the list. [ more ]
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J-Pouch ForumsPouchitis
Anti-inflamatory diet?
JK Jay K
Halo52208 ❤️
Jan Dollar I agree with the above. In regard to finding a "natural cure," there just really isn't any such thing. You can possibly control your symptoms with diet (again, this varies person to person), but you can't really cure your chronic pouchitis that way. I've been on this site a very long time and every person who thought they found a natural cure only found a temporary solution. We'd all be doing it if there were consistent results. Perhaps it is because the causes of pouchitis are varied. I... [ more ]
deweyj I typed a long winded answer late last night but then as the site was uploading it, I got impatient and switched off before it saved so I will try again, maybe this time being more succinct. I agree with Scott that dysplasia is more likely from long term battle with UC vs Remicade. Remicade or other biologic use is linked to lymphoma risk. The risk is heightened to the general population by two fold, if I recall correctly it is 4 in 10,000 vs 2 in 10,000 for the general pop. but as you can... [ more ]
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J-Pouch ForumsGeneral Discussion
Cyanosis
skn69skn69
skn69 Update... Since I stopped the pink salt and went back to the good-old fashioned iodized salt my thyroid has shrunk back down to normal (that will teach me to use all these new-fangled foods)...the nails are pink again, I am less cold in the extremities and my hair is falling out a lot less (hubby noticed the amount that he vacumes up from the floor is way down)...Was by the sea for a few days so I walked barefoot up to my knees in the freezing seawater...did some nice yoga breathing there... [ more ]
skn69 Great idea (I never thought of that) Thanks S [ more ]
Scott F Good luck figuring it out, Sharon. There are different flavors of Raynaud's. In any case, I suggest you try to get a couple of good photos that accurately show the color (tinkering with backgrounds may help). That will help your doctor unravel the mystery. [ more ]
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J-Pouch ForumsHelp! Need advice now!
lots of surgeries
M maddie18
skn69 OK...in French we say a 'B Flat'...your surgeon commited a B Flat meaning that he hit the wrong key and it made a really bad noise (a clunker or a big mistake)...Before throwing him out with the bathwater (to mix a few metaphores here) ask him why.... Sometimes (granted not that often) the rediculous things that some surgeons come up with can be related to real fears for your health and life...so before you give up completely on him please ask for clarification. Too skinny? That may just be... [ more ]
lablover I'd get another surgeon. What a horrid thing to say. [ more ]
Angie Wilson Sharon - thanks for giving great advice and support to Maddie18. Maddie18- yes - had to have strictures dilated both without and with anesthesia - it eventually worked! Hang in there! [ more ]
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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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