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J-Pouch ForumsGeneral Discussion
Pumpkin pie
U UjohnjC
Spooky Sure you can! Everything in moderation. Enjoy! [ more ]
mgmt10 I just had a big piece with cool whip. Sooooo good!! Enjoy! [ more ]
CTBarrister My father told me he follows Libby's pumpkin pie recipe, and I can attest from eating his pies that following this recipe will lead to an excellent pumpkin pie: https://www.verybestbaking.com...-famous-pumpkin-pie/ [ more ]
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J-Pouch ForumsGeneral Discussion
1st thanksgiving!
U UjohnjC
UjohnjC thanks everyone and happy thanksgiving peace jj [ more ]
mgmt10 I eat everything. Chew your food well if you're worried and enjoy the day! [ more ]
Scott F I eat it all, too. Most J-pouchers have pretty varied diets. Some do notice trouble foods (and some of these are probably deceptive or echoes: I still avoid a glass of milk even though I finally discovered I was fine with it). Others do have lots of food sensitivities. If you don't know which category you are in then it's best to pay attention and figure it out. And for most of us, the best advice is to not overeat. The corn will come out looking like...corn, but that's just fine. Remember... [ more ]
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J-Pouch ForumsGeneral Discussion
Prednisone is a nightmare.
RE5RE5
Scott F If symptoms clear up on Cipro and/or Flagyl then you don't have "antibiotic resistant" anything. If it won't stay cleared up between courses of antibiotics, then you might have "antibiotic dependent" pouchitis. [ more ]
CTBarrister I would tend to agree, if your GI prescribed prednisone over Entocort for those issues. [ more ]
RE5 Yeah I have Crohn's with the good ol J-pouch. I swear up and down I have pouchitis but, my GI Doctor isn't exactly listening to anything I say. I also think I have some sort of antibiotic resistant pouchitis since some symptoms clear up when I take metro / cipro. I think I might be at the point where I will have to travel to a GI that specializes in pouches because I'm not getting anywhere with the GI doc I have. [ more ]
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J-Pouch ForumsGeneral Discussion
Perianal crohns, functioning j pouch.
J j_stone
RE5 Let me know what you find out. I'm literally in the same spot you are. [ more ]
LORI726 What about nitro oint rectally (negative- causes bad headaches) or nifedipine oint rectally? Both have helped heal/get rid of my fissures in the past. When things were really bad, I would have a bowel movement in the warm sitz bath water whenever possible. Definitely was easier/less painful that way than the normal way!! [ more ]
Jan Dollar Hopefully you get some viable options with that info! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Dysplasia or not
ItsanewworldItsanewworld
clz81 After 14 years of UC, my annual scope showed low grade/indeterminate dysplasia. My GI decided to treat aggressively with UC meds for 3 months to see if it went away (meaning that what they saw was just inflammation). Had another scope 3 months later that showed the dysplasia had become more widespread and also had increased in grade. By the time I had my surgery 3 months after that, when my colon came out, there was high grade dysplasia throughout. Long story short, you may want to play the... [ more ]
CTBarrister I also had low grade dysplasia found in my colon and was recommended to have surgery after 20 years of UC. I delayed for about 9 months after that diagnosis, and when I finally had surgery things had progressed and my surgeon advised me that my colon was dissolving in his hands as he removed it. Apparently I was very close to experiencing perforation and toxic megacolon. Things had gone from an elective surgery to a "can't wait any longer" situation based on what he told me after the... [ more ]
J9Pouch So after 20 years with UC my annual scope turned up some low grade dysplasia. That's the first time my GI suggested surgery and I flipped my lid. I spoke to a surgeon, they said it was entirely possible that follow-up scopes could show it was a false result and that I should get re-scoped every 3-6 months just to be safe. My GI said that after 20 years my chances of developing colon cancer were 30% and I should consider surgery regardless. I desperately wanted to put it off for at least a... [ more ]
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J-Pouch ForumsGeneral Discussion
Lomotil Question,
Clever1Clever1
powder we buy the real Psyllium, without all the additives and chemicals [ more ]
Scott F Many folks see improvement when they use some form of soluble fiber, which will thicken and bulk up stool. Psyllium (usually Metamucil or Konsyl) is common, as are Benefiber and Citrucel. A personal dose has to be worked out through experimentation, and some folks have gotten into trouble by overdoing it. Some surgeons advise to use it with half the amount of water recommended on the label, though I disagree with that advice. And some folks feel worse instead of better when they take soluble... [ more ]
powder How lucky for you and hopefully many more have a great success with psyillium [ more ]
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J-Pouch ForumsGeneral Discussion
Back to work....
PouchomarxPouchomarx
Pouchomarx myOriginally Posted by aka KNKLHEAD: Yikes! But I am optimistic for you! I should note, after an "RR" (Remzi Redo) I had four solid days of business meetings early morning to late night out of town -- breakfasts, meetings, floor shows, late dinners and a few glasses of wine -- and all I can say is I'm not sure how I could be better. I have to remind myself, I think I had my takedown after redo at the end of August -- so I'm three months out. I am hoping even better for you, Poucho. Think... [ more ]
aka KNKLHEAD Yikes! But I am optimistic for you! I should note, after an "RR" (Remzi Redo) I had four solid days of business meetings early morning to late night out of town -- breakfasts, meetings, floor shows, late dinners and a few glasses of wine -- and all I can say is I'm not sure how I could be better. I have to remind myself, I think I had my takedown after redo at the end of August -- so I'm three months out. I am hoping even better for you, Poucho. Think positive, healing and happy thoughts! [ more ]
Pouchomarx thanks guys... Knucklehead has been my model of inspiration [ more ]
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J-Pouch ForumsGeneral Discussion
Does Jpouch get rid of Colitis ??
Jeff807Jeff807
JenJen Originally Posted by JenJen: Removal of the colon (total colectomy) removes the symptom, colitis (inflammation of the colon.) Those with a permanent ileostomy and no remaining colon or cuff, can no longer have colitis. Those who have a j pouch, can have similar inflammation in the several inches of remaining colon used as a rectal cuff which is commonly called cuffitis (inflammation of the cuff.) Because total colectomy does not eliminate the cause of the inflammation, which is an autoimmune... [ more ]
CTBarrister It's true that the surgery eliminates the problem (diseased colon which could become cancerous) and not the cause (autoimmune disorder). The autoimmune disorder remains and may manifest in other ways and other illnesses - or not! If it doesn't, you could view yourself as being cured, I suppose. But in many cases, people with J Pouches develop Crohn's or Crohn's like symptoms and/or pouchitis, rheumatoid arthritis, anklyosing spondylitis, and other disorders that are caused by an autoimmune... [ more ]
Spooky A j-pouch should not be considered a "cure" and if any surgeon tells you this, it is not a correct answer. Basically, you still have ulcerative colitis/IBD even if your colon is removed. UC can recur in the remaining part of the rectum (the rectal cuff) no matter how small it is, and there are many in the medical profession who also believe that pouchitis is simply another inflammatory process and as such, just another manifestation of IBD. You may also still experience extraintestinal... [ more ]
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J-Pouch ForumsGeneral Discussion
Fistula and anucort
rachelravenrachelraven
n/a I've been going through a similar situation for the last couple months: my symptoms have been feelings of narrowing/swelling, PRESSURE, and throw in some increased frequency, urgency, and accidents/leakage, increased drainage from fistula. My cuffitis symptoms are not classic, either. I very rarely have bleeding or pain. Scopes however reveal relatively severe cuffitis (and pouchitis in the distal end of pouch) ... always. I have not been on steroids since original surgery. I too have been... [ more ]
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J-Pouch ForumsGeneral Discussion
Uveitis
Mark65Mark65
Mark65 Hi Cat, For now the Imuran seems to help so I'll take it At some point I'm sure the Doctor will try and bring me off the Imuran and see how it goes. If I need to stay on it ... well .. guess it'll have to do. [ more ]
Catinthehat Mark, I think inflammatory problems run in my family. I have had UC since my twenties (now 69). I had j-pouch surgery about 7 years ago. I have had other autoimmune problems as well, including polymyalgia rheumatica and pyoderma gangrenosum. So far I haven't got Uveitis, however my older brother has had it for at least 20 years (he's 74). He has lost about 95% of his vision despite various treatments. I have always felt that his smoking and drinking contributed to the uveitis. I hope you are... [ more ]
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J-Pouch ForumsGeneral Discussion
Taking medicine with psyllium husk
DorisRDorisR
Jan Dollar Ha! We should only be so lucky! My gut is extremely efficient in extracting calories no matter how fast it zips through. Jan [ more ]
DorisR Thank you for the response. I hope it does that with my calorie intake as well [ more ]
Jan Dollar The reason you are not supposed to take fiber supplements with other medications is not because of an adverse effect, but the fact that it may block or delay absorption. This could affect the efficacy of your medications. But some drugs may be OK. Mainly, if you should not take a medication with food, the same is true of fiber supplements (Of any kind, not just psyllium). Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Psyllium Husk, Potassium and Water
DorisRDorisR
DorisR The potassium was 5.2 and wasn't that elevated. But because my fasting glucose was 106 and the potassium elevation too, I thought I'd better ask around. My blood levels have always been good. However, it wasn't high enough for any concerns but I need to keep my eye on it. Thanks for the input. [ more ]
Jan Dollar Yeah, I have seen one report, but this was truly a crazy amount of bananas and this person was eating nothing else, not drinking hardly any fluids and had an eating disorder. Jan [ more ]
Scott F While I have (once) seen high potassium from banana abuse, I certainly agree with Jan that a damaged blood sample or a medication side effect are more likely causes for the result. Metamucil just isn't a suspect. [ more ]
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J-Pouch ForumsGeneral Discussion
Dysfunctional pouch w/ Chronic Pouchitis (?)
SolomonSealSolomonSeal
SolomonSeal Regarding pouch excision: how did you guys handle the potential complications? Adhesions, male sexual incapacitation, losing small bowel, and goodness knows what other unexpected issues. I really am worried as it is really depressing living with this quality of life and feeling like I have no reasonable options to improve things. [ more ]
TE Marie I had surgery diverting from my j-pouch to a permanent ileostomy while leaving my j-pouch intact on 8/31/15. I had a pouchoscopy a few weeks ago and no pouchitis or cuffitis. I was not given any medication for the scope so my husband and I saw the full scope. I had both of them chronically, had recurring strictures plus pelvic floor dysfunction. I let things go too long and should have done this sooner. That said, I am surprised your doctor is willing to remove your j-pouch before you've... [ more ]
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J-Pouch ForumsGeneral Discussion
scope?
U UjohnjC
Jan Dollar Some clean out is OK, but anything too involved is just a waste of time and energy. The staff typically just issues the standard prep because the doctor does not tell them there is no colon to prep. I just do clear liquids the day before and tap water enemas until clear a few hours before I leave the house. Jan [ more ]
clwakley It depends on the Doctor who is doing the scope. Some do not require a complete prep as you would for a colonoscopy. Some do though. [ more ]
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J-Pouch ForumsGeneral Discussion
PROBIOTICS
DowntownDowntown
Downtown Thanks Spooky! = I am going to go the ALIGN route from COSTCO. Two bottles with and $11 discount for a basically 3 month supply on sale now for $43 and some change. Also going to chat VSL3 DS with my gastro MD when I have my routine flex sig in December. BTW this feb will be my 6 yr pouch anniversary. [ more ]
Spooky VSL#3 was also cost prohibitive for me as my drug plan does not cover it, even with a prescription, not to mention, many pharmacies told me they couldn't order it in anyway. So after trying several other brands, including Culturelle, Jaimeson 4-strain, and generic Lactobacillus acidophilus, I eventually started taking Align and I've had very good results with it. I've been using it just over 2 years now. Align tends to be widely available, and it's a little more budget friendly than VSL. I'd... [ more ]
Downtown Jan - Absolutely like your last line ... this too will pass. On a serious note, thanks for the info. Mike [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch Longevity
H hfc
deweyj yay for the first time I almost feel like a rookie. my jpouch is 29 years old soon to be 30. prior to this discussion I had only met one person who had a jpouch one year older than mine. my dx has morphed to crohns based on clinical observation of chronic pouchitis, and development of two strictures, but truth be told we haven't had biopsy confirmation of crohns tissue. so we treat with a biologic paired with an immunomodulator and that by and large seems to work. hfc, kudos to you on 4... [ more ]
Tanner My pouch is 32 years old. Have had all kinds of problems in the past. But I am teacher and coach For 38 years. Lots of scar tissue problems. [ more ]
Bionic Woman Originally Posted by ValB: My pouch is 36 years old. I was the first done at the University of Iowa hospitals back in 1975...it was experimental at the time. There is so much available today, information wise, that we didn't have back then. They only waited 30 days before doing my takedown surgery. Finding a good colo/rectal surgeon is the true key. Its funny but I still keep in touch with my surgeons who did mine They were true angels. Hi ValB I'm confused. If you had your J-Pouch surgery... [ more ]
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J-Pouch ForumsGeneral Discussion
Shooting stomach pains
U UjohnjC
Jan Dollar Yeah, could be a partial obstruction. Push fluids until this clears. And, no bowel sloers or fiber. Jan [ more ]
UjohnjC now when i get a cramp stomach pain i have small bm seems hard to get out also starts smooth then seems like it is to big is this blockage passing or is it pouchitis [ more ]
skn69 Sounds like a partial blockage to me...as long as a little bit is coming through you are not fully blocked. Heating pads, walking, gently rolling left to right with knees bent, gentle yoga movements, drinking fluids if they stay down, (no solids please until it passes)... If the pain gets worse, nothing goes through any longer, you start getting chills, shakes, fever or vomitting then head over to the ER. Let us know how you are doing as time goes by. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Cramps
U UjohnjC
UjohnjC now when i get a cramp i have small bm seems hard to get out also starts smooth then seems like it is to big is this blockage passing or is it pouchitis [ more ]
Scott F The best way to test the fish oil idea is to stop it and see if that helps over a day or three. Cramps are commonly gas, and sometimes a partial blockage. It *might* be a garden-variety GI bug, or less commonly something like C. diff. I get crampy pain when pouchitis is active. [ more ]
UjohnjC Started taking fish oil also could it be thar [ more ]
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J-Pouch ForumsGeneral Discussion
liners or pads to use for mucous??
PouchomarxPouchomarx
TE Marie Congratulations! I'm glad you are doing so well and are easing back to work already [ more ]
Spooky You can also order B-Sure pads directly through the manufacturer's site, it would appear: http://www.birchlabs.com/bsure...e-absorbent-pads.php [ more ]
Jan Dollar No, I doubt these would be covered under insurance. I was talking about your local hospital supply store or drug store, in case you needed them quickly. Sometimes the surgical clinic will provide dressing materials, but usually it is just for the immediate post op period. Refills, you are on your own. Shouldn't be expensive. They aren't expensive on Amazon.com. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Crohns dx?
pattympattym
Mountain Baker I understand why you would be hesitant. My pouch isn't great. It's okay. I'm hoping my sister will do better because she will get a j-pouch not an s-pouch, she probably won't have less bowel because of a fistula, and she has a doctor who has been doing the surgery for years. I was one of my doctor's first pouches and he was a trauma surgeon. Theresa [ more ]
pattym thanks so much for all the advice. my slides of my colon were destroyed after 10 years. So just recently, since my surgery was in 05. I think I would head out to CC for a surgical consult if I was to ever seriously think about a reversal. I feel great and my ileostomy works pretty good. Is it an inconvenience at times...yes but I am sure a j pouch can be too. Its a tough decision to make...I would sure like a flat stomach with no bag but not knowing for sure how a reversal would work for me... [ more ]
CTBarrister I think Yale does their pathology in house. And in fact I just went through this at Yale where my pouchoscopy pathology report was looked at for Crohn's vs. pouchitis and the 3rd different pathologist in 3 states and 2 coasts concluded "inconclusive." The other two pathologists were in Mount Sinai in NYC and in LA when the path report was sent out there for a second opinion at the behest of my then NYC GI. [ more ]
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J-Pouch ForumsGeneral Discussion
Feeling defeated. Placement of ANOTHER mushroom drain
Uc-DanielleUc-Danielle
Uc-Danielle Thank you and it did. I will def keep everyone updated! [ more ]
n/a I hope this helps you, Danielle. Best of luck! Please keep us posted as to how it all goes? I feel something going on inside "down there" and am so afraid it's an abscess or another fistula, and am ready to put an end to all this, if at all possible, so will be following your progress closely. There are only so many EUAs one can handle! [ more ]
Uc-Danielle I have actually made a decision. i decieded to have a temp ileostomy. i had an appt with my gastro dr and he told me that if dr remzi is saying surgery would be benefical that is the route to go. he doesnt take surgery lightly and thinks i will def benefit from having it. after thinking about it for a few days and weighing options i thought this was the best thing for my overall health. i am literally sick and tired of being put under every other month it seems and the drains and setons. i... [ more ]
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J-Pouch ForumsGeneral Discussion
Military & Flying
F Flyingfrog
thumprhare ...can't make rank, promotable...I meant [ more ]
thumprhare I had UC and was AD. You will get an MEB and will likely found to be unretainable. You 'might' be able to appeal to the PEB, but depending on recovery time and how you fare doubtful you can fly. Go to the AR on medical care, it's a PDF you can check. Since the issue will be living in austere environments. Don't know how long you have been in, but if you are an officer or close to retirement then you have a chance at being retained non deployable, but really it depends on the MOS. I was... [ more ]
Jan Dollar Hopefully in that case maybe you can pass the medical standards. I have no clue. But, I doubt they give you the boot if you have a hernia repair that is unlikely to be a recurring problem. Good luck! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Paris bombings
JeffsmomJeffsmom
skn69 Thank you all. The most selfish thought that I have had tonight...Thank you G-d that none of my friends, family or students were hurt...followed immediately by prayers for all of those families that cannot say the same thing. No, life will never be the same...But that is what 'they' want, isn't it? S [ more ]
Jan Dollar So glad you are well and safe, Sharon. I know it will be a while before life returns to normal, and perhaps things will never be quite the same. So sad that evil people take advantage of a free society in such a way, and feel justified. Stay safe! Jan [ more ]
CeeeeCeeee Such a sad day. Stay well, Sharon. You are in my thoughts......always. CeCe [ more ]
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J-Pouch ForumsGeneral Discussion
What to do with extra supplies?
N nc
Deanna6 I have mine back to an Ostomy nurse that up helps run a clinic for homeless patients with no insurname and no way to keep clean supplies. Just ask. [ more ]
Madi78 I sent mine to Samaritans Purse. [ more ]
Jeffsmom I donate mine to a healthcare clinic in Camden NJ. I have a friend who is an ostomy nurse and many of her patients don't have insurance. So she gives them to her patients. A Medicade nursing home would work too. Or even the senior center in your town. Hope this helps. [ more ]
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J-Pouch ForumsGeneral Discussion
Vedolizumab injection
DS David S
AllyKat I had my first one on Tuesday. My pouchitis got so bad that in the summer I had to go back to an Ileo. After my second one in 2 weeks they are letting me get reversed. Yay!!! It's a 50 50 shot but my doctors office was in the trials and they are seeing very good results. It does take a while to work. You can try Remicade, that works fast, but less side effects with vedolizumab. I got very sick with Remi but it did work even when I stopped for a few years. Feeling hopeful with Entyvio. Go for it! [ more ]
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J-Pouch ForumsGeneral Discussion
fistula after j-pouch surgery
sonnymansonnyman
sonnyman Originally Posted by Jeffsmom: hey jeffsmom... happy ending ! (no pun intended !!) [ more ]
Jeffsmom My son has a duzy of A tale! In June 2014 had a colonectomy with a j-pouch creation. In September 2014 they put him back together. In NI ember he was in so much pain they did a bunch of studies and found nice size abscess. Rare unidentifiable fungal infection they said. In January, they found the fistulia. It was connected to the abscess and the pouch, but where, no one had any idea. In March it was decided to take him off the pouch and put him back on the ostomy. as of June 2015 they knew... [ more ]
sonnyman Originally Posted by Uc-Danielle: sorry to hear that Danielle .. we try to deal best with our situations and we've been through alot with this UC business haven't we ??? best wishes. [ more ]
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J-Pouch ForumsGeneral Discussion
Considering pouch removal - help, anyone?
n/an/a
n/a Best of luck, JLH - I so hope the surgery/recovery goes well, and it all works out for you like it has for others. Keep us posted! TE Marie, any plans for the future of your pouch? Is it a day-to-day thing, keeping it as long as there are no problems? Since I've been on tindamax/anusol/canasa for almost a week now, things are feeling somewhat better, but I still feel some sort of low-grade infection going on. In addition to possibly feeling the "tinglies" from the tindamax. But this cycle is... [ more ]
JLH I'm going to play my age card and top all of you – – I'm 68! I'm on the plane to Cleveland for the K pouch surgery. Tough decision, but necessary as J ran its course. Best of luck to you coming to that decision. Janet [ more ]
TE Marie How many of us on here are 59? I use to think I was the old lady here I wanted to get rid of my pouch - when I finally decided to give up using it. I was scared of the surgery. Now I wonder if I should have had it excised. Since everything is working so well maybe I won't need to have it out. I am not getting any younger. It's nice to read about good things happening in j-pouch world. Thanks for sharing Laura. I think it is a preferable to have surgery close to home. It makes follow up... [ more ]
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J-Pouch ForumsGeneral Discussion
RV Fistula and sexual function
L LisaT
n/a My fistula doesn't exit into the vagina, but jusssssssssst outside of it. So yeah, I have the same problems as you and JHendrix and sorry to say, we've just quit trying. In addition, I have a seton, which rubs and tugs the exit hole of the fistula, which can ache (and bleed) if I just pull or tug it the wrong way when drying or whatever - so I can't imagine - you know - marital relations. So very frustrating. I've had the fistula for going on 5 yrs. now. I'm 23+ years into this pouch, so due... [ more ]
JHendrix The gynecologist did as he couldn't find any cause for the symptoms. There is also a 'lump' that comes and goes (more coming than going in the past months) which sometimes develops a head and drains. I have (especially lately) discharge but it does not have an odor. It was pretty confusing. I hope to get some answers when I see the surgeon. I need some sort of light! I hope the same for you too. [ more ]
LisaT JHendrix, Just responding was very nice of you to do. Who ordered the MRI? It's very frustrating for my husband, so I would LOVE to figure it out! If you find anything, let me know. THANKS! [ more ]
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J-Pouch ForumsGeneral Discussion
My first post
CshellCshell
Spooky It's awful, I know, but the sad truth is that the recover period can be rough. I had a lot of trouble with my rectal stump as well, but I was so sick with UC and required emergency surgery, that I had to live with the stump for over two years after my initial subtotal colectomy. I had lost too much weight, so they wanted me to gain at least 25 pounds before I went on to step 2 of the surgery. I was prescribed Cortifoam for my rectal stump when it got really bad. The medication was expensive... [ more ]
deweyj I am not clear on the surgical steps you've been through, perhaps admittedly because I read it quickly. I would echo the view that often right after surgery, especially if there are some hiccups, its a head scratcher if you are in a better place. my suspicion is that over time, as the details sort out the hiccups get taken care of you will be in a better place. follow the surgeons orders to the letter and seek medical expertise as you need to, including calling on the surgeon and his staff... [ more ]
Jeffsmom Cahell, this too shall,pass! I promise. My son has had UC since he was 6 years old. In 2014 we found out that his entire colon had to be removed because he was producing precancerous polyps. In June 2014 he had the surgery. He was 23. He also had a j-pouch made at the same time. Since then, he has had all sorts of uncommon right down to rare complications. He has had two more surgeries and is looking at another one perhaps early next year. My point is, something will always go wrong. But... [ more ]
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J-Pouch ForumsGeneral Discussion
daily vitamins
M maddie18
GraceB Thanks for bringing up that question. I didn't think of that. Grace [ more ]
maddie18 Have you seen a dermatologist? http://www.zizaidermatology.co...-lip-rash-cheilitis/ [ more ]
Dottie R Has anyone had a vitamin deficiency develop since getting the j pouch. I'm experiencing swollen lips and tongue as well as red rash around my lips and cracks at the end of my lips. After going to several doctors to check if it was due to an allergy (food, toothpaste or?) or stomach gasses, nothing came up answering the reason. The only clue I have is one doctor said to be tested for B2 or B3 deficiency. My doctor has tested for everything else under the sun, but not that - yet. [ more ]
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J-Pouch ForumsGeneral Discussion
Scar tissue
Deanna6Deanna6
GraceB I had my J-pouch surgery 5 years ago due to UC . I have had problems from the beginning . I have had four stretching ( once a year) My gastro does not recommend having surgery to remove scare tissue, he says it will only grow back. I had many problems after surgery. It took me a long time to figure out what to eat and what to stay away from. I still can not gain weight but I am in a better frame of mind about my problems because of this web site. My whole life has changed due to energy level... [ more ]
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J-Pouch ForumsGeneral Discussion
dirty toilet
IsaacIsaac
SaraJ My husband hooked up a hose with a spray, like on the kitchen sinks, and I use it to clean myself before drying as well as cleaning the toilet as it flushes, works great. [ more ]
Lew I find the easiest solution for me is to wipe any splatter above the rim or on the underside of the seat with toilet paper and flush. This usually works pretty well. Every few days (or as necessary) I use the good old toilet brush and do a thorough cleaning job. I am pretty sensitive to letting things get gross as my wife and I are sharing the same toilet(s). I also pretty much restrict myself to the master bedroom and main floor bathrooms. [ more ]
Buttsy I have an awful "air about me" since getting a J pouch. Am not ever without PooPourii ...it is wonderful. Small enough to carry with. Now has several aromas, all natural fragrances, like Vanilla, Lavender, etc. It is not harmful to breathe, and you only spray once in the toilet bowl before you go! Has saved me when out to restaurants, airports, friends' homes, etc. [ more ]
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J-Pouch ForumsGeneral Discussion
Hair Loss
NS Nora S.
CTBarrister I lost most of my hair by age 35 and I have been cleanshaving my head for a long time now. I have been told I have a good head for a clean shave (it's geometrically proportional), so I don't mind it any more. It also saves money on barbers and shampoo and other hair maintainance costs- which can be extensive and ridiculous. I can use the savings to pay for all of my many pouchitis meds. For a woman it's a different issue, I suppose, unless you are a Sinead O'Connor fan. These days Sinead... [ more ]
aka KNKLHEAD Love the input. My hair was much thinner after the last surgery and the "male pattern baldspot" was getting quite a bit larger. I have been taking Kirkland (Amazon) Minoxidil 5% (sp?) -- twice a day at first, now once a day and it seems to be helping, I am growing hair where there was scalp. I might try Nexus VitaTress Bioton Shampoo, too! [ more ]
BillieLinsley Do check all reports... [ more ]
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J-Pouch ForumsGeneral Discussion
Imuran and hair loss
A Amy1
atwoodt I was on 6MP for several years and it definitely caused hair loss. Not enough for me to discontinue using it - it did help my UC symptoms - but now that I'm off it I am thrilled to be growing back some hair [ more ]
BillieLinsley One of my family member was going through less hair loss. Common side effects of Imuran include upset stomach, nausea, vomiting, diarrhoea, loss of appetite, hair loss, or skin rash.I was searching through the old posts and I know this has been discussed before but I would like to bring it up again. I know that hair loss is a side effect of imuran.Doctor increased dose and they started losing hair in little chunks in the shower and brushing hair while its still wet.Since there was something... [ more ]
JJA I've been on it almost 2 years now, but haven't really experienced any hair loss. Are you sure it is the Immuran that is causing it? Back in my UC dad I had a period of significant hair loss, but re never really had a conclusive reason why. It stopped after a few months. All the best- [ more ]
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J-Pouch ForumsGeneral Discussion
Vent - non pouch symptoms
thumprharethumprhare
Scott F If you think you're not getting adequately hydrated with just water, an oral rehydration solution may work better. The magic is in the bit of glucose, which seem to have a substantial effect on absorption. Folks here like to also add the usual salts (of the sort that someone with cholera despeately needs), but I'm not sure that the salts make a difference unles you've got true diarrhea. [ more ]
lablover Stink eye= An unpleasant look (as in a gaze). [ more ]
skn69 Hydration can be more than just water...Especially for us who lose a lot of mineral salts with our output. They have all sorts of tablets for athletes that replenish your mineral salts, they work well for us...maybe? If not I use a homemade lemonaide that is just freshly squeezed lemons, a touch of salt, honey or sugar (or the fake stuff), chopped mint leaves and lots of water...it does a good job on me. The osteopath is a great idea, they sometimes have ideas that we never think of...also... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Hemoriods?sticure?fissure?
U UjohnjC
UjohnjC Thanks jan made appt to see surgeon friday [ more ]
Jan Dollar Could be, but with your other signs and symptoms, if you have a fissure or anal abscess, it could lead to frequency and urgency with incomplete emptying. Jan [ more ]
UjohnjC So the last 2 nights woke up at midnight and up 3-4 hours going every 30-45 min and only tiny amount of still comes out do I have pouchitis? [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Can someone explain to me what is going on with my body.
RE5RE5
CeeeeCeeee I've had my J-pouch since 2002. My bms are very watery and I like them that way as long as I have good control.......I do, unless I have pouchitis which is a very infrequent occurrence for me. To me, watery bms are easier to pass. They are no where as watery as they were when I had an ileostomy for a full year. My bag was constantly full! I don't take anything to thicken my bms or control how many I have. I just automatically empty my J-pouch whenever I need to urinate. No biggie! [ more ]
Scott F I agree with Sharon, though I'd call it "antibiotic dependent" rather than "antibiotic resistant." It doesn't sound (to me) like Crohn's has anything to do with these symptoms. I'd suggest a few things: 1) Try to find a gastroenterologist who can spell "J-pouch" 2) See if just one ot the two antibiotics is enough. Cipro alone once daily took care of me for years, though I've had to add Flagyl in the past year or so. 3) Even before Cipro, a potenty probiotic called VSL #3 DS was all I needed... [ more ]
skn69 Sounds like a classic case of pouchitis to me...seems to be somewhat antibiotic resistant in the sense that while you are on them you are fine but it does not cure it...your pouch is becoming dependant on them to function properly. You may need a separate G.I. to follow you for this. Not all surgeons do great follow up. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Exercise
B bwils
lablover My husband weight lifts, swims and goes hiking with the dogs. Exercise is the best medicine !!! (besides laughter..) [ more ]
Spooky I'm very active myself - I'm a runner, I horseback ride, and I do yoga classes at least 3 times a week. I've never had to stop an activity to empty my pouch. I don't really have any specific secrets or tips to share, other than the fact that I ALWAYS empty my pouch immediately before a run or just before I get on my horse, or before starting my yoga class. I tend run at different times depending on the day, so that doesn't seem to be a factor. Oddly, I have noticed that it seems when I'm... [ more ]
Former Member Eat little to nothing and foods that get along with your pouch better before going out. If your workout is quick you'll be fine. Long workouts after eating lots of food means you better know where restrooms are located. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
SiBO?
B Bodoni
aka KNKLHEAD My wife was having "chest pains" that no doctor could figure out. Finally, she had a breath test and she was off the charts. She tries to be gluten free, (but more "light") and it has made a world of difference. SIBO gets missed, IMHO, by way too many doctors. [ more ]
Scott F A couple of months of doxycycline cleared it up for me, and it didn't come back. My doctor didn't bother with the breath test. [ more ]
JLH oh yes, do i ever have it. will respond later, but in the meantime there are several related forums on it and the lowFODMAP diet, which saved me. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Any Weight Gain Suggestions?
N nola
aka KNKLHEAD Hi, Nola. I have to ask, do you feel you're in general good health? Do you possibly have anemia or other issue that your body might struggle with? I ask this because we all know that colitis, or a leaky pouch or other inflammational issue, for example, can result in huge weight loss. I trust you are in otherwise, very good health? [ more ]
Jeff D I'm 6'5" and weighed around 225lbs. before my cancer diagnosis and surgeries. At the end of the entire ordeal, my weight had fallen to 170lbs. I had questioned if nutrients were being absorbed effectively as well. It's been nearly 3 years, but I finally weigh around 210lbs. again. I wish I could offer a well-documented plan but I can't think of what I did differently compared to the things mentioned above. PlantFusion protein powder (was actually recommended on this website and I order it... [ more ]
KP How much do you weigh? Do you feel like your pouch is working properly? How many calories are you taking in? It sounds like you know all this, but I'll say it anyways: take in as many good calories as you can, avoid sugar (especially sugary drinks), and keep your bowels moving slowly with Imodium/Lomotil even if you feel like you don't need it. I'm in a similar situation: 31yo, 6'2 and weigh between 150 and 155. For reference, I was in the low 180s during my "healthy" days. I have a loop... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Constant stomach noise
Rae26Rae26
Jeff D Agree and empathize with you. The rumbling situations in social situations suck, especially on the dating scene. I'm trying a couple different things at different times to reduce it, because I know this isn't going away completely. Just attempting to experiment at this time. OTC gas-reducing medication right before I eat Lomotil before or after I eat to slow down the GI system Significantly more water after I eat I just had surgery in October to remove adhesions near my stoma site and that... [ more ]
Mysticobra I sleep with ear plugs. Fans are going to along with the air conditioner. Window unit. Couldn't do with that unit. [ more ]
Twilight My digestive system makes all kinds of noises also. I use a lot of Gas X and I think ginger capsules also help. At night I sleep with a white noise machine and it helps a lot with eliminating noise especially all the rumbling. I didn't noticed how much until I slept without it one night at my daughters and listened to all the rumbling noises all night long. [ more ]
See all 21 replies...
J-Pouch ForumsGeneral Discussion
What is C-Dif?
L 10larry10
Jeff D I was hospitalized last year with C-Dif. Rough experience but fortunately one course of antibiotics took care of it (was re-tested twice in future months after diagnosis). Several of the risk factors identified above apply to me so I wasn't surprised: Several different antibiotics within a couple months Past use of chemotherapy drugs Surgery of the GI tract [ more ]
Jan Dollar In addition, if you ever were diagnosed with C. difficile infection, you'd know it. Caused by antibiotics and difficult to treat. It can mimic UC. Jan [ more ]
KP http://www.webmd.com/digestive...um-difficile-colitis It's a type of bacteria that causes very bad diarrhea that can lead to serious/fatal complications. Occurs for a number of reasons, but one of the main reasons it happens is heavy use of antibiotics. Oddly enough, the best treatment is antibiotics. I've never had it and I'm grateful for that. I've heard it's really bad. copy and pasted from WebMD: As the bacteria overgrow they release toxins that attack the lining of the intestines ,... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
energy levels
M maddie18
skn69 I've been saying it for years. I am natually very high energy but find that with the pouch I have 'highs' and "lows". Whenever home I need an afternoon nap, no matter how much or little I slept the night before. Hubby nicknamed me 'sleepy' when we started dating...I would just go and curl up on the sofa and drift off of be out of breath climbing a flight (not my natural state). I figured out 3 things. First I need water and lots of it...tons of fluids of all sorts or I wilt. After 2 glasses... [ more ]
Paul H I have less energy come the evening and need a nap in the afternoon. My GI says his pouch patients have all complained of a lack of energy and cannot explain why, all the bloods appear to be good so he is at loss to the cause. He's head of department at a top Barcelona hospital so has plenty of experience. Paul [ more ]
maddie18 I noticed the times that I forget to breathe [ more ]
See all 7 replies...

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William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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