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J-Pouch ForumsHelp! Need advice now!
crazy itching as related to antibiotics
R Rebe0505
Jan Dollar Good point Scott. Also, drug rashes are usually on the trunk. But, I learned long ago to never say never (or always). I get dry skin eczema in the winter and it can drive me nuts. I have noticed more rashes when I'm on antibiotics. Been off for a week and it is clearing. Jan [ more ]
Scott F Since the itching seems to come and go, it's also worth considering other (non medication-related) causes. Dry skin would be at the top of my list, at least with the winter weather we're having here. [ more ]
Rebe0505 thanks jan..i think i will try lowering dosage ..its high 500 mil three times a day ..maybe i can get by with two times a day 500 mil..and i need to see if i constantly get itchy ever night on it i guess..will repot my findings in case anyone else has this problem..benedryl might work if i take with it.. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchoscopy-does your insurance consider it (& pay for it) like colonoscopy?
M msh98991
ELH My pouchoscopy is called flexible sigmoidoscopy and my insurances pay for it. [ more ]
Scott F Our *diagnosis* coding system changed a lot in the Fall. Our *procedure* coding system (at least the one that everyone uses) didn't change at all. [ more ]
kta When I am having cuffitis or pouchitis, the payment is much higher. Hint, hint. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Swelling with remicade
C Crystal<3
Crystal<3 Before infusions they give 2 Tylenol and Benadryl..My first infusion I was sick and had a major headache but after the second infusion had major swelling and sick for 2 days as well as the third..Thanks for your reply�� [ more ]
deweyj its not a common allergic reaction but it certainly sounds like somethings amiss. curious did they premedicate you before each of your infusions? so infusion 2 and infusion 3 have caused this major swelling? you might also try calling the infusion center staff as well and get them on board to this reaction. and Jan is absolutely right, the most severe reaction would be anaphylactic shock and you don't want to experience that. [ more ]
Jan Dollar Sounds like a reaction. You need to notify your doctor. Take some Benadryl in the meantime (generic is fine). Go to the ER if it does not improve or you feel any throat swelling or dizziness. If you are OK to have another infusion, they will need to premedicate to prevent another allergic reaction. You need to take it seriously, as each exposure can cause a more severe reaction. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
How long until you could 'get on with your life after takedown?'
Anthony GambleAnthony Gamble
Scott F People get different symptoms with pouchitis. The most common ones I've seen come up here are increased stool frequency, urgency, and nighttime leakage, incontinence, or frequency. Some people get more systemic symptoms (e.g. Fever, feeling crappy), but I've never experienced that. Bleeding can occur but it's uncommon. [ more ]
msh98991 Anthony, I am a US citizen-born and raised here and all too familiar with how expensive it is to get sick in the US! I think your idea about getting names of contacts in the Cincinnati area from your UK doctor is a great one! Certainly get all the names you can of anyone that specializes in Jpouches. Pouchitis, for me, is similar to UC but not as obvious. With a Jpouch, you have control so you may have cramping, gas and have to frequent the toilet but it's not every 5 minutes and you don't... [ more ]
Anthony Gamble Thanks again for all the replies guys, some great info! Yeah I hope it never comes to the point of having to use anything but always nice to know. If I do go back I would be travelling with insurance (I'm not sure how much j pouch insurance would be, hoping cheaper than UC cover!). It's nice to know that pouchitis treatment is cheap as from what I have read it seems to be the most common issue. In terms of pouch adjustment via surgery I would just fly home for that. Question for MSH98, are... [ more ]
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J-Pouch ForumsGeneral Discussion
After Scar tissue was removed 2010 Bladder Over reacting
therealstingertherealstinger
Scott F Norvasc doesn't list urinary retention as a side effect, but it could be doing it to you (or the timing may be a coincidence). You could call your doctor to ask if you can try a different medicine, at least as an experiment. It's pretty miserable when you can't empty your bladder properly, but it's quite common. Getting older isn't for sissies. Good luck! [ more ]
therealstinger Scott I think my new bp med Norvasc 5 mg has made it worse [ more ]
Scott F One way of dealing with this is to learn how to catheterize yourself, to fully empty your bladder. This is far from a perfect solution, but some consider it better than their alternatives. Do you know if any of your meds may be making this worse? [ more ]
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J-Pouch ForumsGeneral Discussion
Portland Jpouch support group
BA Bill A
deweyj don't know if you would find a local group per se in Portland. we are a slightly larger metro area and don't really think one exists here in SF Bay area. a local surgeon's ostomy nurse might be a resource. otherwise try pinging the local CCFA chapter? I know some people up in the northwest who I can ask as well. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post takedown, leakage, burning pressure pain, problems emptying
S sally85
deweyj ah yes for clarity you had a 2 step vs a 3 step. candidly from what ive heard the loop ileo is often a brutal period as for whatever reason, maybe Jan or others can explain the nature of the loop ileo makes for more challenges. I agree with Jan though, if indeed there is a belief that you have a leak, I am at wits end understanding how the surgeon or any medical professional overseeing your care isn't attending to it immediately? I think you need to call your surgeon, your GI, your PCP,... [ more ]
Jan Dollar If it makes you feel any better, skipping the diverting ileostomy did not cause the leak. They happen regardless. But, it does reduce the contamination coming from above. If your surgeon did not order your MRI as urgent, you should call back to get this done ASAP. Usually I am not one for making too many demands, however, it sounds like you have an abscess brewing and it will likely get worse before it gets better. Be sure to take your temperature twice a day, before taking anything with... [ more ]
Duane Wells ❤️
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J-Pouch ForumsHelp! Need advice now!
Painful after bm
N neosapphires
Jan Dollar Sounds like a fissure, which is a tear in the anal canal. The treatment is warm sitz baths and management of stool consistency. Either too firm or too loose stool can lead to straining and fissures. If it does not improve in a few days, you need to see your doctor to get a prescription cream to treat it (nifedipine or nitroglycerine). Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Gut related arthritic atrophy
C Cath
Jan Dollar I haven't heard of that one, but I have enteropathic arthritis, which is an inflammatory arthritis associated with UC. I was diagnosed about 10 years after my j-pouch surgery, but I had symptoms a good decade before my surgery. It can cause accelerated joint degeneration. I have not had any joint replacements, but I have been on biologics and azulfidine since my diagnosis. Enteropathic arthritis usually does not lead to joint destruction, but it can if you have the chronic type. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Spasms
BA Bill A
Bill A I have been taking vsl3ds for a few months and I know it has an initial gas contributor. I have never been able to avoid the gas issue. The problem is not its avoidance but the butt burn that results. Number and quality of BMs is improving but still it and gas issue make butt burn very difficult. Still need and awnser [ more ]
Jan Dollar Opiates really are not very good for spasms, even if they seem to work. The doctors have to jump through hoops to prescribe them, especially if you are taking oxycodone, which has a very high abuse potential. But even with hydrocodone, they are clamping down. I know, because I have been on it for many years at very small doses. If the anticholinergic antispasmodics like Bentyl and Levsin have too many side effects, how about trying the muscle relaxers, such as Valium. It is not without its... [ more ]
Jeffsmom Ks1905, it is the FDA regulations. They probably looked over his script writing and perhaps received a warning. I lost a script for something, I forget and the doctor went nuts. But cutting you straight off is dangerous. I'm sure you had some amount of withdrawl. [ more ]
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J-Pouch ForumsGeneral Discussion
Are iron pills harsh on jpouch?
J j-bird
deweyj I take iron pills routinely. if I haven't taken them for some time, they will upset my belly ie stomach pain, and then I just take them with food. if you go to Feosol's website they and I suppose other places have excellent advice for enhancing iron absorption from taking with Vitamin C to taking on an empty stomach if you can, um yeah stomach it. also avoiding caffeine, dairy amongst other things including a PPI all of which interfere with iron absorption. but for the record it is very... [ more ]
Former Member I've been taking iron pills for a few months now and my iron level is still low. Foods fortified with lots of iron don't help either. [ more ]
SmurfyGC Iron is mostly absorbed in the terminal ileum (ie the jpouch) which now largely acts as a reservoir. Therefore, iron is not absorbed as well. Heading for my first iron infusion in two weeks because my haemoglobin keeps dropping can't wait for an energy boost! [ more ]
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J-Pouch ForumsK-Pouch Korner
K pouch and Malabsorption issues...anyone else??
hollyfaith76hollyfaith76
skn69 My best friend has an animal hospital and they tell all their patients to give pill to their dogs in peanut butter...same suggestion here too..Crush and take mixed into a tsp of peanut butter (or nutella...pick your poison)... Sharon [ more ]
hollyfaith76 Thanks for the advice! I have quit taking the pills whole...but am still getting old ones out periodically. I am not losing weight too quickly, I just think I'm not absorbing anything from my food intake at all. The iron infusions help with the anemia, just have to get to a level where we can start maintenance treatments. I won't know what to do if my hemoglobin gets back to double digits. I just didn't know if anyone had tried taking multivitamin intravenous therapy (which I can do while I... [ more ]
skn69 Hi Holly, I remeber taking those pills! Had them shipped here at great expense only to discover that they go in and come out in the same condition. I finally got prescribed iron shots that I took weekly...(they actually tatoo the butt so be careful)...it lasted about a year or 2 until I could get my levels up but in the end I started taking everything in liquid, gelcap or chewable form...works much better for us. Our transit time is often too quick and thus some things just do not digest,... [ more ]
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J-Pouch ForumsGeneral Discussion
iron supplements
J J9Pouch
mgmt10 I have issues with iron as well. I tried going the oral iron route but it didn't help at all. I started seeing a hematologist a few years ago and we decided infusions were the way to go. So he checks my levels every 4 or 5 months and if I dip too low we do an infusion or two to keep things in check. It's helped tremendously. The downside is my insurance deductible is quite high so a lot comes out of pocket. Definitely try different oral iron pills first....you may find one that works for... [ more ]
Spooky I have also been anemic on and off. I seem to have had the best luck with ferrous fumarate 100 mg supplements in bringing my levels back up. I used to take the Palafer brand name, but now I take a generic (Life brand) as it is much less expensive. I take it right before bed, as recommended by a pharmacist years ago, and which has remained very sound advice. There are few side effects that I've noticed, aside from a temporary darkening of the stool. The stool can be black or even very dark... [ more ]
GraceB I also have low iron levels I have been taking a chewable Vit C 500 mg and B12 5000 mg dissolves under tongue I buy them in Cosco Kirkland brand They seem to help I take them in the morning after eating breakfast. My blood work has been better since taking them. I also take multivitamins, magnesium and calcium. and also vsl#3ds in the morning. I do try to drink a lot of water I also take a lomotil about 1/2 hour after taking vitamins every day. That helps me get thru the day I have been... [ more ]
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J-Pouch ForumsGeneral Discussion
Codeine question
PouchomarxPouchomarx
Lesandiego My Rx for my trauma related injuries was oxycodone-acitaminiphen 5-325. Suggested dose 1-2 tabs every 4 hours. Since I would only take 1-2 all day, I could stretch the Rx to last a long time. I did not have to visit the doctor for refills, but I would have to go to the doctors office to pick up the script. Major pain in the rear when you are in a wheelchair. The regulations and control they put on narcotics really hurts the people who need it and pushes others to the streets to find other... [ more ]
Jan Dollar It depends on the dose, from what I understand. Has to be less than 90mg per dose to be schedule lll. Otherwise it is in schedule ll and under the same restrictions as hydrocodone and oxycodone. http://www.dea.gov/druginfo/ds.shtml Jan [ more ]
Scott F Codeine is in the same legal category ("schedule") as oxycodone, except when the codeine is below a dose threshold in a combination product (e..g. Tylenol with codeine) [ more ]
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J-Pouch ForumsOstomy & Skin
Passing stool and c.diff after diverting to perm. Ileo??
TE MarieTE Marie
TE Marie Thanks for asking I'm feeling better but have a long way to go. I use to have mild UTI'S. The first time I went to an ER for pain it turned out to be a UTI. I told the doctor I was embarrassed and she said they get a lot of UTI'S there. [ more ]
deweyj how are you feeling? If youre still in pain I hope you've reached out to surgeon? lol that's a good saying of your dad's. I hear UTI's can be nerve wracking. [ more ]
TE Marie I think your are right DEWEYJ. I'm not going to email my surgeon until I get the c.diff test results and wait for more "evidence" of stools. I was upset earlier and needed to chill. I am not at death's door! My dad says "if it wasn't for bad luck we'd have no luck at all" and he's still here at 84 I just ordered test strips so I can test myself for UTIs. Dah, you can get glucose testing strips so I should have made this connection sooner - like 15 years ago. [ more ]
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J-Pouch ForumsGeneral Discussion
Has anybody given up on their pouch and gone back to the ileostomy?
M MaryL
JillM After 3 1/2 year of chronic pouchitis I had my j-pouch disconnected and an end ileo created. I continued to have problems and at age 31 had the pouch removed. The best decision of my life. I have not had a single GI issue since (and that was 13 years ago this April). I have had two babies and I live a very normal life with no drugs at all. Happy to answer any questions - best to PM me so I get an email as i don't visit her often. [ more ]
BillV MaryL, I suggest that you have a good discussion with your son’s GI about the repeated infections that he is having and perhaps get a referral to a doctor who specializes in treating those conditions. Another thought is to get a thorough medical examination at some place like Cleveland Clinic that routinely deals with complex medical problems. While going to the bag is an option, I personally would attempt less drastic measures before taking that route. If it finally comes to removal of his... [ more ]
AllyKat I'm sorry, I hate being held hostage by insurance! I hope he gets well ASAP ps I got hit with that stomach virus. I also ended up in the ER and it took almost 10 days for things to settle down. I spent close to 100 dollars in cvs on every anti diareah drug and popped so many things at once and it still was literally running out of me. [ more ]
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J-Pouch ForumsGeneral Discussion
Stenosis
D Deedeeh
Angie Wilson I'd listen to Jan! Also, my sister went through this period where she had a bunch of fibrous tissue in a big lump under her pouch - caused strictures and all kinds of issues - no one could rx the problem for 3 years - until C. Clinic. Jan also knows a lot more than I do about all the different kinds of scar tissue, etc. as does Scott. I have no idea what kind of adhesions I had throughout the years. I hope you can get this fixed! We are pulling for you! [ more ]
Jan Dollar Anal stricture and stenosis are the same thing. If the stricture is so fibrosed that they cannot safely dilate it or it just springs back after the stretching of dilation, they have to do a surgical repair. Sometimes a simple sphincterotomy is effective, where they just cut the stricture and hope it does not reconnect. If the fibrosis is really severe, it might require complete removal, which amounts to pouch advancement surgery. If it requires anything more than a sphincterotomy, I'd want a... [ more ]
Scott F "Scar tissue" can mean some different things. In this case, from what Deedeeh has written before, it's probably not adhesions. It sounds like a stricture that might require something more aggressive than dilation. It's important to find out exactly what they propose to do. Sometimes they remove a *short* section of intestine that is strictured and create a brand-new anastamosis. I'd be fussy about my surgeon if that's what they are proposing - it's a bigger deal than a dilation or six. [ more ]
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J-Pouch ForumsK-Pouch Korner
new BCIR
PO Pressing On
Pressing On I tried to reply already....guess it didn't post. Thank you for the advice and encouragement. Went off the Flagyl, per surgeon's office, and in a low FODMAP diet. Have seen tremendous improvement -much less diarrhea and gas. As for intubation, had to wear a Foley 2 days per Susan Kay. It was to hopefully loosen whatever is causing my pouch to not fully open when it's not full. It will always open when it's full, just not other times. Still working on that issue-time will tell. [ more ]
JLH my k pouch surgery, at cleveland clinic, was also two months ago and i am climbing the same, steep learning curve. thanks bill for confiding that you had doubts during the first three months. i certainly have and all i need to take care of is a cat, not three young kids! good luck to you. given that i am in the same boat as you my best suggestion is to read--and re-read as i have--the many posts on the k pouch korner. they have been very informative and have helped me cope. i'll put in my... [ more ]
skn69 Pressing, So sorry that the road is so rocky...sometimes it just takes time to get to know your pouch and how it functions. I would dial back a bit and go a bit slower...change your diet a bit...maybe cut out the diary prodcuts (high gas producers), the carbs (makes the contents of your pouch thick and pasty and difficult to remove) and up your grape juice or prune juice intake along with your coffee intake (may just be why I am so energetic and hyper)... You may wish to hook up your tube... [ more ]
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J-Pouch ForumsGeneral Discussion
Sleeping with J-pouch
L LBo
gen1 I think it's all on how late u eat, if u don't want to be getting up at night don't eat too much before bed. I can usually sleep all night but if I ate a lot that afternoon certain things I know I will b getting up during the night. So I think if your husband stops eating late it will definitely help. (: [ more ]
CJB Just glad to hear that I am probably normal. My pouch is almost 20 years old and I have always gotten up at least once every night. It's annoying, but just part of my life now. I try to be grateful even when times are hard. So I am thankful that at least I wake up when I have the urge to go. C-jay [ more ]
mgmt10 I've had my j pouch for five years now and most nights get up once to go. Seems once or twice is very common. Just the nature of the beast. Luckily I always fall right back to sleep. I have found what I eat or what time I eat it has little to do with it. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch
R Rena's10
deweyj hello and welcome! first please note that this forum tends to self populate with people who encounter challenges, not all jpouchers have these challenges. consequently, you have happened upon a potentially wonderful resource if indeed your daughter encounters surprises along her jpouch journey. I would be sure that the surgeon has a good relationship with the GI, hopefully an IBD expert that is following your daughter. I would also ask the surgeon how many jpouches she/he has done for... [ more ]
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J-Pouch ForumsGeneral Discussion
Anybody with large intestine removal surgery developed another autoimmune disorder?
D drvena
winter wish I got autoimmune inner ear disease, v rare [ more ]
Beth_B diphenhydramine is the generic name for benadryl [ more ]
TE Marie It's great you are making it through the work day well. Hopefully you don't go crazy and over do it like I use to. I have a nasty view of steroids and it's just because of what the devil prednisone did to everything else in my body and mind while fighting back my UC. As I said above, I am using a prescription steroid ointment around my eyes and it works well. I take my daily antihistamine before bed. Maybe you could do that. I don't know what Benedryl's generic name is but my former PCP, who... [ more ]
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J-Pouch ForumsK-Pouch Korner
Would like to find an Colostomy forum like K-Pouch
J JudithS
JudithS Thanks Jan, I've passed this along to her. Hope this helps as much as all of you have helped me. Judith S [ more ]
Jan Dollar I would suggest she start with the UOAA (United Ostomy Association of America). http://www.ostomy.org/Home.html There she will find links to find local support groups, plus there is a discussion board for pretty much any type of ostomy, including colostomy. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Problems with nightly incontinence
E ElSur
Scott F Metamucil will give you a slightly more formed stool. If you try it and like it, then keep using it. If your untreated stool works fine for you, then don't bother. [ more ]
ElSur @LHOLDEM The problem was that I actually started feeling better or even good again and the problems still were going on. And furthermore, after a longer while, they came back But it seems like it's taking more time to become normal again. That's what I have learned from this situation. Which probiotics do you use to support your body getting better sooner than later? @JAN Yeah, obviously they are for people with a colon But as there are no information about the situation for people like us,... [ more ]
Jan Dollar Here's the thing. Package inserts are mostly applicable to the general population. Specifically, Metamucil instructions are for those with a colon. But, even for those with a colon, it is prescribed to help with diarrhea and bulking the stool. For us, the effect is sooner and the actual timing depends on your specific transit time. Think more around 2-12 hours instead of the 12-24 hours. It does not really slow the gut, but if you have strictures, too much fiber can clog you up. If you have... [ more ]
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J-Pouch ForumsGeneral Discussion
Eagles Guitarist Glenn Frey Dies Of Complications From UC/RA
CTBarristerCTBarrister
Caty Monday's announcement included lyrics to the following song: “It's Your World Now” Written by Glenn Frey and Jack Tempchin From the Eagles’ Long Road Out of Eden album. "A perfect day, the sun is sinkin' low. As evening falls, the gentle breezes blow. The time we shared went by so fast. Just like a dream, we knew it couldn't last. But I'd do it all again If I could, somehow. But I must be leavin' soon. It's your world now. It's your world now. My race is run. I'm moving on like the setting... [ more ]
CTBarrister I previously posted about him in another thread, but keyboardist Nicky Hopkins was another famous musician who died after surgery for IBD (Crohn's Disease) - at age 50 in 1994. He did a lot of session work with the Rolling Stones and Led Zeppelin and might have become a permanent member of one or the other of those groups or the Yardbirds but for his Crohn's Disease. He was unable to tour because of the illness. More about this here: https://en.wikipedia.org/wiki/Nicky_Hopkins My favorite... [ more ]
Spooky As someone who almost died from UC myself, I have firsthand knowledge that UC can be a fatal disease. We don't know the extent of the complications Glenn Fry had, but UC aside, surgery itself--almost any surgery--always brings with it a risk of complications or death. (We know. We've all signed those forms in the hospital.). Also, as Jan said, pneumonia is unfortunate complication of surgery and hospitalization in general. Being aged 67 and in generally frail overall health from UC and other... [ more ]
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J-Pouch ForumsOstomy & Skin
Smelly Fish Oil
R Randybw1
TE Marie In the past I could taste that fishy stuff after taking them. I am taking a different brand that is orderless and tasteless. It is OTC and probably different from what your doctor ordered. Can you ask him for a different selection/brand? There are some foods that make my j-pouch smell awful. I just bought some tic tacs and am slipping them in my pouch when eating something I think will stink. I'm glad you mentioned they were good for triglycerides. My brand is to be taken twice daily and... [ more ]
Lambiepie Whew, I was thinking how bad that would be! Try the mouthwash in the bag. I've gotten to where I don't even smell my own smell. Sometimes I'll re-enter the bathroom shortly after emptying and think, "Ugh, is it really this bad? I had no idea!" [ more ]
Randybw1 Sorry, I didn't smell like Poo before, just when I emptied....No smell at all before. [ more ]
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J-Pouch ForumsPouchitis
Diatomaceous Earth
samantha1803samantha1803
palm55152 yes that's what my dr told the surgical group-- strange but true. I am now trying a fungal cream--holding my breath ty for your help [ more ]
deweyj further evidence of what works for some works for some. I'm glad to hear its working for you. placebo or not, it is what it is. If I ever went Vegan I am sure I would die. Veggies and I do not get along, and I say this as the kid who ate his vegetables, but they fly through me now almost in the same form they entered, apologies for the graphics. please keep us apprised of the progress. oh and yeah giving up bread scares the bejesus out of me, its one of life's gifts to me. lol. palm its not... [ more ]
samantha1803 To answer the questions about where I heard of this, originally from Youtube. I then did quite a lot of research and people were basically shouting from the rooftops over it so I thought I would give it a try. It is supposed to clean your intestines of all kinds of toxins--heavy metals, bacteria(yay!), viral, fungal etc. Then the thing that was tricky is that people with colons said it made them, "regular" which was a big risk on my part ,(I thought it would give me diarrhea & I figured... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Being discharged from Hospital... but dont feel I am strong enough
ShylockShylock
Breezie While I agree that getting out quickly is better for avoiding hospital-borne infections, I understand your dilemma. When I was in my early 20s, before I developed UC, I had an emergency removal of my gallbladder. I didn't have family and friends in the town where I was and I was being pushed out of the hospital the next day, before I felt I was ready. The magic words that changed things was when I said, "I don't think I will be able to take care of myself." And bingo, I was granted another... [ more ]
deweyj shylock I hear you. the general belief especially if you are on immunosuppressive meds is that a quicker exit is better especially with the sad trend of horrid infections finding hospitals as very hospitable breeding grounds. that said, I also find that for GI patients who have endured as you have, ie obstruction, vomiting, intolerance of input, that one would be wise to be sure that the patient is able to ingest with some level of normalcy. maybe not a steak per se, but at least scrambled... [ more ]
Scott F Generally the only reasons to be in a hospital are when 1) something needs to be done there, or 2) something needs to be observed there. I tend to try to get out of the hospital as soon as humanly possible, so if it's reasonably safe for me to leave, I'm out of there without delay. So if you really want to stay, speak to what the hospital staff will do/observe that cannot reasonably be done at home. And make sure everyone washes their hands! [ more ]
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J-Pouch ForumsHelp! Need advice now!
I read about too many complications with Jpouch
Becky18Becky18
Former Member I've only recently had my takedown and a j pouch is the best decisions I've ever made. No complications as of yet; 3 to 4 BM's per day, sometimes 5, maybe 6, no night time BM's or leakage. Can go for couple of hours between BM's and never any urgency. I eat all kind n types of foods, although not spicy hot Asian/Indian food by choice. What I eat makes little difference to output, although porridge/oatmeal has an effect on output and increase BM frequency. By choice I don't consume alcohol. A... [ more ]
lholdem It's certainly not ideal to have an entire organ removed, but then again it's not ideal living constantly with a diseased organ either I don't know why exactly you're considering surgery - Mine wasn't emergency, but I had enough dysplasia that my cancer risk was way too high. I'm going on three years now since surgery, and they been my healthiest three years in a very long time. I would definitely try the J-pouch and you can always revert to an ileostomy if it doesn't work out. [ more ]
kta When my large intestine came out, I realized just how much UC was controlling my life. I love my pouch. It is not perfect, but as others have said, I would do it again in a second. For me, the ileo was horrible. I hated every moment of it. I was always sure it smelled, my skin is sensitive and I had inflammation and skin breakdown under the wafer, and looking at it disgusted me. That said, every choice is individual. Good health in your choice [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post Proctocolectomy 4 weeks and exhausted!
Rosie RoseRosie Rose
Rosie Rose Thanks guys! That makes me feel better. I think that's a good idea Jan! I'm gonna do that and I'll update soon! Thank you everyone! [ more ]
Jan Dollar Dewey is right. The Imodium probably gave you energy indirectly by slowing your gut and improving water absorption. Slower transit time also means more nutrients absorbed. That is the good news. The not so good news is that Imodium has a cumulative effect. It will build up over several days, so you need to pay attention to your output and adjust your dose accordingly. So, rather than take it for several days, then stop it completely, it is best to start off with a low dose and gradually... [ more ]
CeeeeCeeee Listen to Jan and your body! It took me almost a full year to regain stamina. I took naps as needed and did my best to eat a balanced diet with much protein. Don't be hard on yourself. You've been through a lot! [ more ]
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J-Pouch ForumsGeneral Discussion
Vit B12
C Chayes
Scott F B12 injections can be given either subcutaneously or intramuscularly. [ more ]
colitisman34 I was prescribed Nascobal, it's a B-12 nasal spray and it got my levels up to normal. I was injecting 1x week but doing subcutaneous injections instead of IM. Can anyone with experience injecting B-12 clarify whether it is injected subcutaneous or intramuscular? [ more ]
Jan Dollar It varies person to person. After nearly 20 years I became B12 deficient. Oral supplements brought my levels right up, and I even have chronic pouchitis now. My husband, same age as me, also was deficient in B12. He has no j-pouch, but does have UC in remission. He responded well to oral supplements too. But, first step is to be tested. Then you know what you are dealing with. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Worst Pain Imaginable
F Ferguson
kta Your description reminded me of when I had a fizzure. It seems silly to not diagnose that, though. In addition, I wonder if you have been given any pain meds. There are times when I would not have been able to function without them. Where do you live? Can you make it to Cleveland Clinic? [ more ]
Scott F Ferguson, this could, perhaps, be an anal fissure from your description. Has that been considered (or ruled out)? They can be difficult to manage, but in addition to sitz baths there are medical treatments that can help: nitroglycerine, nifedipine, and even Botox injections. The yeast grows in continuously damp conditions. If you're putting a barrier cream over a damp area (e.g. from wet wipes) you're likely to run into trouble. In addition to whatever antifungal you're probably using, I'd... [ more ]
skn69 Hi Ferguson, First off, I am so sorry...this is all wrong in so many ways...wrong that you are in so much pain and wrong that they have not been able to diagnosis it... So here are my 2 cents. 1 Have they asked you exactly what Kind of pain you are in??? There is actually a classification chart that lists: http://projects.hsl.wisc.edu/G...ment/session2.4.html Which can help them to understand the origins...the word 'pain' means nothing to them in and of itself...they need to know what kind. [ more ]
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J-Pouch ForumsGeneral Discussion
Hernia
ikenberryikenberry
Scott F This sounds like it might be an inguinal hernia - if so, it's probably not related to scar tissue. It can be brought on by increased pressure in the abdomen, from heavy lifting or (perhaps?) pushing too hard. How hard are you pushing? Getting red in the face? Gasping? [ more ]
See 1 reply...
J-Pouch ForumsPouchitis
Stubborn pouchitis
J Jenniferann
DJ H Agree with Scott's comments (low carb and VSL#3). I would add trying: - no sugar - no gluten or grains (I even stopped gluten free grains and have better results then) - no dairy - no alcohol and see if things improve. If they do, then you need to figure out which of those was causing the biggest problems one by one. [ more ]
deweyj I didn't tolerate my one try with Cipro. but Flagyl or more accurately the generic, Metronidazole works very well for me. Usually within a day of taking first pill symptoms subside. Lately I have been battling a new form for me, ishemic pouchitis from marathon training and have yet to fully kick it. Used Xifaxan in November and it helped initially but then seemed to lose efficacy for me at the end of the 2 week course. unfortunately have no insight on the eosinophilic disorder. [ more ]
palm55152 interesting thing happened to me. my dr. went to a conference about pouchitis. he was told that I could not have pouchitis because I had fap--he continued to say that yes,indeed, I did have it-now I think that part may have cleared up but I think I have another infection in another place--gotta find the appropriate drugs for that [ more ]
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J-Pouch ForumsGeneral Discussion
Butt Burn Ten Years post-takedown
MM Mike March
Marc Shaw Had my J-Pouch done in 2001. I had been suffering with the "Butt Burn" since that first bowel movement till this year, 2016. So much so I should have bought stock in Calmoseptine considering how much I've been through. That never really cured the pain at all. After all those years I purchased a simple attachable bidet system for our regular toilet. Nothing fancy, has a dial you turn to clean you and one that cleans the spicket. Thought cold water would be a problem , but its a God send. So,... [ more ]
CeeeeCeeee My surgeon told me butt burn and itching (frequently at the same time!) is usually exacerbated by leakage/seepage even if we can't see it! So, trying to thicken things (I eat oatmeal at each meal for awhile and/or take Metamucil once or twice a day) to thicken things up. I also use Calmoseptine and I make sure to include placing some inside just a bit, as well. It may burn at first but seems to really soothe and heal my irritated skin. After a few days I'm usually good to go for quite some... [ more ]
Mike March Oh, yes; the opium prescription is quite difficult to obtain. It took several visits, multiple other medications and escalation to the top specialist in this field. Six months of diarreah!! At that, it can only be for a two week supply which will require bi-weekly hospital visits to refill. It truly was a last resort. My wife and I are finding (she has high blood pressure) that many US medicines simply don't exist here. mike [ more ]
See all 23 replies...
J-Pouch ForumsGeneral Discussion
Constant urge to go and cramping pain
N NerdMom
Jefferson As a Dad my heart goes out to you, it's very difficult watching your kids suffer and not being able to help. My very active and able son lost his ability to walk last year at 12 years old and the Neurologists dismissed it as being all fabricated in his head....ended up his brain was putting pressure on the spine disrupting the flow of spinal fluid. Doctors will be Doctors, but the ones that are good are life savers and change the whole experience. If you're not getting that then keep... [ more ]
Angie Wilson You don't sound grumpy! It IS so frustrating when you keep dealing with symptoms and no answers are forthcoming. Very hard to watch your loved one suffer. If you keep getting the "he's fine" answer - and he clearly is not improving - perhaps (I know it's awful to go through the process) change doctors - is he going to GI person or his surgeon. I've found GI (medical) people much more helpful in dealing with issues through the years with my pouch. If it gets truly awful, I vote for the... [ more ]
ikenberry This may not be helpful......maybe try a new doctor. Like my brother said....some doctors graduate at the top of the list some at the bottom. My doctor is in Seattle. Dr. Steve Medwell....he is tops in the field....I pray for answers and relief..... [ more ]
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J-Pouch ForumsGeneral Discussion
not yet connected jpouch and mucous....
PouchomarxPouchomarx
Nora S. I had the same thing, before the j pouch was built and after it was built prior to connection. My surgeon said it was normal and it was good, meaning the intestines were moving things thru. Once he told me that, I quit worrying!! Nora [ more ]
Jan Dollar Ever consider the fact that you are older now, compared to your first pouch surgery? Plus, you probably had your complications arising early on the first time. I would think that this different experience is affirmation that you are not repeating the first scenario. If your surgeon is not concerned, you should not be either. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Questions about Pouch and pregnancy
AshleaAshlea
koolfsuchic Laura - Thanks again for all the great info! [ more ]
LHetti Congrats again! Just to post for all to see- I found this milk study by Dr. Tom Hale regarding Remicade: http://www.infantrisk.com/foru...-while-breastfeeding I did choose to bf by son, but know that my GI was against it. My pediatrician and OB were both ok with it. I exclusively bf my son for 11 months. He was happy and healthy and now, 4 1/2 years later, he is still happy and healthy as any other little boy. I do not regret my decision. But make the decision that allows you sleep at night... [ more ]
koolfsuchic Hi Laura - I'm 12 weeks and on Remicade. GI also advised to stop infusions at about 30 weeks. How quickly did your symptoms reappear post c-section? Also, you breastfed while on Remicade? That's my biggest question/concern. Did benefits outweigh risks? I've been doing a lot of reading and all point to not breastfeeding as it passes through the milk. Any adverse reactions with the baby - lower immune system, etc..? I'm so worried about breastfeeding while on Remicade. Any advise would be... [ more ]
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J-Pouch ForumsHelp! Need advice now!
NG tube
M maddie18
Jefferson Yeah depends on the nurse putting it in, my last ER trip the nurse did it so fast and careless it cut me through my nose down to my throat. I HATE NG tubes but it's a necessary evil. [ more ]
CeeeeCeeee I had a twisted bowel (small intestine) about 2 months after takedown. Ouch!!!!! Admitted to hospital. Nurse put in NG tube and was a pro at doing so! I was on a morphine drip with a pain pump. Every day my surgeon visited about twice. Each time he told me he had reserved operating room but wanted to try untwisting my bowel by manipulating it. Ouch!!!!!! However, after three days, relief!!!!! His deep massages worked! I remain very grateful to him! [ more ]
Angie Wilson yes, been there. had ng tube several times. by a fluke, during a hysterectomy, they botched it and perforated my bowel. So, they had to do emergency surgery and they really went after tons of adhesions and tried to sort of get my small bowel arranged better. Had one time after that with an ng tube. No blockages since. I hope you are getting better. It's so hard and frightening when you are in the hospital and you fear the worst. 29 years of j pouch and I'm still here. Hang in there. [ more ]
See all 9 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy/Breastfeeding and Remicade
K koolfsuchic
koolfsuchic Thanks, Deweyj! This is great info. I'll PM to get more info on your friend, if you or her don't mind. Betty [ more ]
deweyj Never gone through this myself but I have a friend who has. She doesn't have a jpouch but she's had two healthy babies while on Remicade. I believe she has stopped in the last trimester. She has participated in the PIANO study which my Dr here at UCSF oversees. And each baby was breastfed and if I recall correctly there were minimal traces of Remicade if any. Message me and I will try to get you in touch with her. Ive introduced her to another friend who is on Remicade and trying to decide... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sudden cramps & bloating
ShylockShylock
Jefferson Yeah I think dying would be a lot less painful and a whole lot easier. I had a strangulated adhesion 10 years ago and my surgeon said he used Seprafilm during the surgery. I had a scan last week and it showed no signs of adhesions so I'm guessing it helps. My surgery was an emergency but I'm glad I had it now and if my surgeon tells me I have adhesions in the future I'll have the surgery again in a heartbeat to avoid the agony of a total blockage. [ more ]
Megan O Very sorry you are having to deal with this. I can relate, some of the worst pain ever. I've had surgery to "tidy. Up" (love this phrase!) adhesions three times now. The surgery isn't fun but far preferable to the pain and agony being obstructed. I have my pouch since 1986 and have no other issues with it, so far. I had never heard of the adhesion barriers before, interesting. My thoughts are with you, glad you are getting some relief [ more ]
deweyj ouch! NG tube will eventually help, its undeniably uncomfortable but in some respects the more uncomfortable it is, the good news is the less uncomfortable your abdomen will be. don't know much about adhesion surgery but at least youre in the hospital and can be attended to. take it easy, it should be better soon. [ more ]
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J-Pouch ForumsPouchitis
Constant infection
PL Patty Lufkin
Patty Lufkin Jan, thank you so much for your reply! I am in the process of making an appointment with Dr. Shen at the Cleveland Clinic. I am hoping he can help. Your explanation explained so many things that I did not understand before. I am so grateful to you and this website! Patty [ more ]
Jan Dollar The problem is that in most cases pouchitis is NOT an infection. So taking antibiotics other than orally is not really a good option (unless you have signs of systemic disease like chills and fever). In most cases it is an inflammatory response to the presence of normal bacteria. If you take broad spectrum antibiotics, especially by injection or IV, you alter your normal body bacteria all over your body. This is OK when you have a specific infection, like bronchitis, but if you don't, you... [ more ]
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J-Pouch ForumsGeneral Discussion
Codeine Phosphate
andru123andru123
hever Hi, been using codeine phosphate 6/8 day for at least10 years to slow bms. Have liver tests 6 monthly, so far so good. Lomotil /immodium had no effect on me so changed to Panadeine Forte. Hope this helps. Heather [ more ]
Jan Dollar It comes in 30 and 60mg pills. Typical adult dose is 30mg. Like anything, start small and gradually increase your daily dose to what works. No more than every 4-6 hours. Another drug to consider is paragoric, which contains all the opiates and is specifically for treatment of diarrhea. I never had problems getting opiate prescriptions from my doctor (my primary doctor would order it). It was just a big hassle for me. I had to keep close track of my supply and put in the request a week or two... [ more ]
andru123 I'm in year 5 of my J-Pouch. I currently take Tramadol and it works just ok, but I would like something better. I don't think getting the med will be an issue as I was lucky enough to have a Dr. who's son also has a J Pouch. So he completely understands the pain med purpose. I tried lomotil and Imodium and all I got was dry mouth. We started with Tramadol but haven't ventured further. As for the codeine phosphate, what is a normal dosage and how many bowel movements could I expect in 24... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Remicade for fistula
C Crystal<3
rachelraven Link to what a LIFT procedure is. Currently things are kinda calmish with me, so I'm just holding. http://www.ncbi.nlm.nih.gov/m/pubmed/24201738/ [ more ]
rachelraven I'm not in NY, sorry. My new surgeon trained at Mayo; he's currently at WVU Medicine. [ more ]
deweyj fwiw, I know someone from local support group who with her jpouch ran the gamut of meds, Remicade, Humira, Simponi, to no avail and was battling fistulas, she started on Stelara late spring and last I heard (in the fall) was doing quite well. so maybe that's some hope. her docs had been encouraging her to consider perm ileo to resolve the fistulas. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Ulcers in pouch/ATZ, questions...
n/an/a
Scott F I don't think you're likely to get a long-term benefit from a short-term treatment. For the short term a round of prednisone would be simple and effective, but I'd be surprised if the effect lasted. [ more ]
n/a I don't believe the ulcers are cleared up with antibiotics. I've been scoped shortly afterwards and they are still there. Another question re. meds - do bigger guns (such as remicade, I assume) work short term, or does one have to be on them forever to keep ulcers away and the mucosa clear? [ more ]
Scott F You're already employing mesalamine directly to the affected area with Canasa, so additional medications would probably be bigger guns that Asacol/Pentasa (note the "ASA" in all three names). Do you know if the ulcers clear up when you are treated with antibiotics for pouchitis? [ more ]
See all 5 replies...
J-Pouch ForumsK-Pouch Korner
advice
IK Irene K
JenJen Irene, My feedback pertains to your hernia problem, which I have experienced. My colon was removed 5 years ago after it suddenly went toxic from UC. Four surgeries later I had a an angry J pouch and was experiencing dangerous and painful blockages. I also ended up with a massive hernia at the repeatedly reopened surgical site. I initially put off having it repaired because of all my other pouch complications and my colon doc agreed. But more blockages and a trip back to ICU made her... [ more ]
Irene K Thank you Janet and Jan. Janet I like Dr. Kiran very much and he is a very good doctor its not him Im frustrated with I guess it just the whole situation and I am not sure what to do. Jan I think I am going to do that when we speak again. Thank you both for answering me I really appreciate it. Irene [ more ]
Jan Dollar I like to pose questions that make it personal. Ask something like, "What would you recommend if I were your sister or mother, or if you were the patient?" Of course, the final decisions are yours, but it is good to know what he would do in the same circumstance. Jan [ more ]
See all 4 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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