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J-Pouch ForumsGeneral Discussion
Two weeks post take down. Help!
S Shannah
5459 instant oatmeal was a god send for me... low pressure coming out, steady, quiet and soothes the skin. i wanted to die i was so miserable... you will clear hurdles over chunks of time. 1 month better, then 3 months better again, then 6 months even better then about a year i plateaued. once you find your fall back foods things will improve dramatically plus you're at the stage where the pouch is stretching out, that hurts. my doctor told me not to let myself go for at least an hour. i would... [ more ]
gleam Warm soapy baths! [ more ]
ISeeUC The pressure and cramping when I had to go started improving 3 weeks after takedown and was much, much better by week 8. Measure your progress in weeks and months, not days. You might want to try a little fiber if you're stools are acidic (benefiber, konsyl and metamucil are popular brands). A barrier paste like calmoseptine or desitin can help protect your skin, but calmoseptine can burn a bit if your skin is raw. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
hydrocortisone suppositories?
G Guest
Jan Dollar Sounds like a plan. I would not be surprised if your hemorrhoid is still causing you grief. Maybe you have an internal one too? If so, the HC suppository should be helpful. As to what is diarrhea with a j-pouch? For me, it is not about consistency. It is about frequency and urgency. I pay no mind whether it is firm or runny. Jan [ more ]
Guest should i risk another night and try them again without my immodium? this is so confusing because how do you know if you have diarrhea with a j-pouch. its all diarrhea really, isnt it? my doc gave me these suppositories because i have this constant ache in the right side of my anus. any ideas what it could be? hes scoping me but cant fit me in for 6 weeks. i have an external hem that is almost gone but the pain feels like its right there. it get worse as the day goes on and is least painful... [ more ]
Guest should i risk another night and try them again without my immodium? this is so confusing because how do you know if you have diarrhea with a j-pouch. its all diarrhea really, isnt it? my doc gave me these suppositories because i have this constant ache in the right side of my anus. any ideas what it could be? hes scoping me but cant fit me in for 6 weeks. i have an external hem that is almost gone but the pain feels like its right there. it get worse as the day goes on and is least painful... [ more ]
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J-Pouch ForumsHelp! Need advice now!
2 failed pouchograms w/ tiny leak
J JessGoguen
JessGoguen Great news is that I had a pouchogram on Monday and my takedown the following afternoon. My doc still sees what he thinks is a tiny tiny leak and believes it will get better with time. I am dealing with butt burn and cluster frequency which I imagine will change once my pouch stretches and I can empty in one visit instead of multiple. I am also contemplating purchasing a bidet in the next few months as I believe it will be a great investment for my new journey. [ more ]
Former Member My only advice is to really ask risks and benefits of trying to resection the leak in pouch. My spouse had a leak that they found tried to Fix was unsuccessful went back in to remove pouch due to Inflammation and swelling and there were unfortunately more risks To redo pouch. After 11 surgeries for My spouse in 4 years, I honestly believe it's so important to really think about your own situation how Many surgeries, and fixing pin hole Leak in pouch, are the risks understood and discussed at... [ more ]
kathy smith What a great gift to ask for! Yea for your awesome husband!!! kathy [ more ]
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J-Pouch ForumsGeneral Discussion
Surgeons in VT or NH or Boston?
L LisaY35
JessGoguen Hi, I just completed my takedown surgery on Tuesday at BIDMC. I had Dr. Poylin and it was a wonderful experience. I think his group did a great job. [ more ]
Semi Colon Lisa, My surgeon was Mowschenson at BI in Boston. I recommend him if you decide to go to Boston. Jerry [ more ]
LisaY35 Thanks, Jeff. I was given Dr. Bleday's name as well. Problem O am having is that my insurance won't cover a lot of the cost in Boston as it considered out of network. I haven't fought it with them yet as I am not sure I want to be 4 hours away from my family and 4 hours away if there are any problems. [ more ]
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J-Pouch ForumsGeneral Discussion
First Annual Checkup - Given a Clean Bill of Health
JWMIIIJWMIII
runner4449 Fantastic news! Thank you for posting your success story here for everyone to see! We need more of these stories to be posted so people know how well the J-pouch can work. I'm doing just as well, and I'm just a little over 8 weeks out from my take-down. Hope you have continued health and happiness with your pouch! [ more ]
Holly M ditto, congrats on your well behaved pouch. Mine still wants to act up but I know each and every day is a learning experience. I too thank all who post to this board with help and advice. Thanks for sharing . [ more ]
kathy smith You're a poster boy! Congratulations on the well-behaved pouch. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
Looking for answers
JeffLoperJeffLoper
5459 I tend to bleed when I bear down while using bathroom and if I drink milk. I'm not attempting to suggest that you're symptoms would be a result of just that but if perhaps you consume a lot of milk...? Good luck, I hope things get better for you. [ more ]
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J-Pouch ForumsGeneral Discussion
pelvic floor mapping by a specialized physical therapist
nikikinikiki
nikiki Thanks for your reply Kelsie. I'm assuming she has a j-pouch? And, when you say she thought it was helping, do you know (or can you find out?) what she thought it was helping with? I really appreciate your feedback. Thanks again. (Hope she feels better very soon.) [ more ]
Kelsie Yes my daughter did this. She thought it was helping but has been too sick lately to make appointments. Her therapist only did "vaginal mapping". [ more ]
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J-Pouch ForumsOstomy & Skin
Loop ileostomy.. i need help please
J Jenmystique
Sierran Farmer I"ll echo what Kathy said. Any of the ostomy supply companies will mail you a range of samples for convex wafers to try. They can also help you over the phone - they'll put you right to a stoma nurse. My permanent stoma tilts down like that, and I had to go to a convex wafer. Before I could get that to work, I used a lot of stoma paste in the depression, and I started out powdering, but pretty soon it was evident that the life of the powder was a matter of hours. I've also had extra material... [ more ]
Sierran Farmer I"ll echo what Kathy said. Any of the ostomy supply companies will mail you a range of samples for convex wafers to try. They can also help you over the phone - they'll put you right to a stoma nurse. My permanent stoma tilts down like that, and I had to go to a convex wafer. Before I could get that to work, I used a lot of stoma paste in the depression, and I started out powdering, but pretty soon it was evident that the life of the powder was a matter of hours. I've also had extra material... [ more ]
Jenmystique I don't really know how to use the rings. I think I have a sample of one but not even sure of that. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blockage or Pouchitis?
RM Rowans mom
dennyp3 Wow, I really hope she feels better soon. I hate the thought of a little girl feeling like this. I know how I feel when I have issues, and I can't imagine how a little one deals with it. One of my worst fears is that I pass on my intestinal issues to one or both of my kids. Good luck with this to you and Rowan. [ more ]
kathy smith Sending healing vibes your way! Please let us know how she's doing when you get a chance to breathe. I'm so sorry you're all going through this. kathy [ more ]
Rowans mom Darn it! C diff starting Vancomycin. If it doesn't help Flagyl and she gets neuropathy from Flagyl. Ugh [ more ]
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J-Pouch ForumsGeneral Discussion
FAP is a disability?
L LilMoe03
LilMoe03 Sorry had a typo. He hasnt returned to school. [ more ]
Chuckus Well, good luck. I don't think simply because he has F.A.P. that he'll get SSI. I can't. Now, if he has debilitating issues that came from have F.A.P., that's a different story entirely. Simply having F.A.P. in and of itself is not a valid argument for getting SSI Benefits. Though I could be wrong, curious what others say. [ more ]
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J-Pouch ForumsHelp! Need advice now!
What is this pain?! Worried...
J ju330
ju330 That's what I was thinking too, maybe a partial obstruction... well, I guess I may never know. [ more ]
Jan Dollar NOW that sounds like it was a partial obstruction. The can come and go suddenly. If things stay quiet, there won't be anything for them to see come Monday. I guess you were sort of lucky the doctor was not in today! Gave you time for things to fix themselves. Hope you have a quiet weekend... Jan [ more ]
ju330 Thank you guys for your responses. The soreness/pain subsided as the day went on; by the afternoon it was gone completely. I didn't even take anything for it... Called my GI and then remembered that his office is closed on Fridays, so I'll call first thing Monday. I was worried about the possibility of another abscess, but this felt different than the other two I have had, and there was no fever. Sitting here right now I feel perfectly fine. So weird!! I guess I'll just see how the weekend ... [ more ]
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J-Pouch ForumsGeneral Discussion
Big toe pain during BM
G gleam
skn69 Sciatic nerve???? When I am sitting down (you know where) I find that it helps to turn my legs/feet inwards (pigeon-toed)...it relieves the pressure on the nerve and helps reduce the pain if you have it. sharon [ more ]
Jan Dollar Not in my big toe, but I get intermittent pain/numbness and tingling down one leg and my perineal area during a BM. Seems to have more to do with how long I am sitting, but bearing down increases it. But, I also have spinal arthritis with nerve root compression. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Glue , Sutures, or Staples?
K Kelsie
Kelsie Liz, now THAT sounds HORRIBLE! Have you allowed staples since? [ more ]
liz11 think I've had all of the above in my various surgeries. And the only problem I had with any of them was with the staples. Only because they were supposed to be removed in I think 7 days. I was in the hospital with loads of complications and seems everyone (doctors and nurses) forgot to remove them. So they got removed at about 20ish days. Needless to say.. it was extremely uncomfortable AND the ones that were at the lower part of the incision that had to be "dug out" have left a nice ugly... [ more ]
Kelsie Thanks for the replies. How long before they remove them? Another factor for us. I think I heard 7-10 days? I hope to be home and 12 hours away by then! Not going back for just that! I think we may have to put up a bit of a fuss to avoid it, but I am getting really good at that! [ more ]
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J-Pouch ForumsGeneral Discussion
Complications from steroid usage, 10 yrs later
R raven68red
raven68red I will wait for the results and if they come back negative I will talk to the doc regarding my research. Thanks for the help. [ more ]
Jan Dollar It sounds like you did your research, but Cushing's caused by steroid use is only when you are actually taking the steroids. That is because it is due to too much cortisol in your system. Once you stop it, your levels return to normal. The main problem people have associated with this is adrenal suppression, where the adrenal glands do not resume hormone secretion after having all the work done by hormones you were taking. Usually it is temporary, but sometimes it is permanent. Still, this... [ more ]
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J-Pouch ForumsGeneral Discussion
10 yrs out. Can't eat fiber / having other symptoms
R raven68red
raven68red I can definitely deal with the gas. After so many years, you get to where you just don't notice it that much. I have a very high tolerance for pain. It is more annoying than anything else. Every now and then I will get a air bubble with a sharp pain and then I feel it pop. That hurst for a few seconds and I just hold my breath. Like you, I won't allow myself to release it or I will have to change clothes. Sometimes I crave those things I know will not end well, but you just say the heck with... [ more ]
Jan Dollar Sounds like you get lots of fiber in your diet, since the fiber we are always talking about is soluble fiber, that is found in starchy vegetables and grains. It seems that it is insoluble fiber that you are sensitive to. That is what you find in fruits and vegetables. Lots of folks have trouble with them too. I agree that you may have IPS, with is like IBS, just with a pouch instead of a colon. I am sort of the opposite, because I am like a human garbage disposal. I can eat anything... [ more ]
raven68red Thank goodness I'm not the only one. I can only eat oatmeal if it is the instant packets and I cook it until it is extremely soft. The regular kind is a no-go for sure. I try to just focus on protein such as hard cheeses and peanut butter. Those work really well. I will check that site out, thank you sooooo much!! All in all it is still better than the life I had before the j-pouch. Living with colitis was not an option and having the surgeries was still the best thing I ever did. I notice... [ more ]
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J-Pouch ForumsGeneral Discussion
Adhesions
J jennym2
TE Marie This is all depressing to me. After 5 abdominal surgeries and being checked for strictures etc. I've been told I have IPS and adhesions and nothing seems to be helping. It doesn't matter what diet I eat or antispasmodic medications for my IPS, I'm still relying on pain medications. My surgeon asked me what I was doing for pain maintenance and I told him Norco and he nodded his head and said he'd see me next year. (My Internist handles all of my medicatopms.) There is a kind of massage that... [ more ]
nocolon-2000 Unfortunately removing adhesions can lead to...more adhesions. Kind of a temporary fix. I think I've had it done once but surgeons really don't want to do it over and over again. If they don' do anything now, wait a while and go back. Squeaky wheel and all... I know have pain off and on due to adhesions and use heat when it's bad - hot bath, heating pad, etc. Massaging the area also works for me. Sadly, it seems some of us (i.e. me) grow adhesions quite well. Such a talent. I hope you are... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cleveland Clinic in Ohio
S Solomin
Uc-Danielle I know I remember! But this seton is literally a pain in my butt. I hate it so much but it's better than it was a month ago. I was absolutely miserable. I have to go back in a month I'm scheduled January 7th preop and January 8th EUA. That will make my 3rd EUA and I know he is just going to tighten the seton a make me miserable! But I wouldn't want anyone else doing it! He told my parents no c word yet and I keep praying it won't ever be. [ more ]
liz11 hey danielle.. I luv him too! I wouldn't trust another colorectal surgeon touching me EVER. Just had an EUA on tuesday with him and another set for early january. when is yours? we were there the same day in nov. for euas. also how are you doing with your seton? any improvement? I am in so much pain from tuesday. no drain or seton, so I have no clue why it hurts so much this time. It was my 6th eua. thank goodness for percos. [ more ]
Uc-Danielle I would also like to know why you don't think dr. Remzi is all what he seems to be? I He is my surgeon and I wouldn't go to anyone else if I had a choice. He's always been nothing but a sweet guy to me and has always been "warm and fuzzy" with me. I'm curious to hear what others think. I've never had a problem. I have to go back in a month too for another EUA. [ more ]
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J-Pouch ForumsHelp! Need advice now!
New J-pouch, uncomfortable
C Changingground
Changingground Thanks for the replies. I think I'll be fine over time. but right now am not happy. Diet, Diet, Diet... [ more ]
Mountain Man Hi Steve, I started to get pouchitis like symptoms about 3 weeks post-takedown and it really scared me. It lasted for a couple of months until my body got used to the pouch. I had severe gas pains and then shooting pain in the anus continually. Sitz baths worked well for this and I took two or three a day. It did finally go away after awhile. I'm sure this is what's happening. Most of us have had the same experience. Try not to worry, it will be fine. Eat foods that are easy to digest and... [ more ]
liz11 I had pouchitis and cuffitis immediately from day one of takedown. Though it was left undiagnosed until about one month later as my surgeon at that time was a $%##$%#%. It got diagnosed when I went back to my GI doc. [ more ]
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J-Pouch ForumsGeneral Discussion
some autoimmune info
L liz11
Connie Ditto that. If the colon is in terrible shape, it has to go, regardless, and worrying about what surgery may or may not trigger sometime down the road is borrowing trouble. Be aware of possible complications, but live one day at a time. [ more ]
clouseau Jan and Liz great insights about autoimmune diseases and how they work and affect other areas of our health. I've had UC-crohns for 25 years and then was diagnosed with lymphoma 1 year ago. I was told it probably was brought on by the 2 GI diseases. My GI tract is much more of a problem now, in the last year, and am in the bathroom more often and for longer periods of time, sometimes 20+ times a day. However like mountain man I believe I am lucky, am very positive and eating extremely... [ more ]
Jan Dollar Well, you have to remember that there are many triggers for autoimmune diseases and we just don't know how to predict which trigger will set in motion any one or more disease pathways, at least not currently. Also, remember that autoimmune diseases are notable for unpredictable disease courses with relapse and remission. It can take a very long time for the disease to manifest after exposure to a triggering event, drug, infection, or whatever. It is not like catching chicken pox and knowing... [ more ]
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J-Pouch ForumsGeneral Discussion
OMG My Coco Bidet arrived...
bootstrapbootstrap
CeeeeCeeee No one is allowed to use the toilet where my bidet is installed. I've now had mine over ten years and it still works like new! It is truly a godsend! [ more ]
skn69 Hi Guys, Just to let you all know that the French invented the Bidet (long before full bathrooms were invented when no one had showers or tubs)...they used them for pre- and post- coital washing, foot washing, washing their babies(!) and....washing their little delicate laundry and socks! Sharon [ more ]
Blake D. I had about the same reaction the first time I used mine a couple months ago, I still have to brace for it everytime, but I love mine. I pretty much stopped using the dryer function, takes way too long to dry so a little tp to dry and everything is fresh n clean. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Calmoseptine & Pregnancy
MD Meg Drum
clz81 It contains zinc oxide, which as Jan said, is probably fine, but there just isn't much data out there for use during pregnancy (especially if you are using all day every day as a barrier). [ more ]
Former Member IS THERE SOMETHING WRONG WITH USING CALMOSEPTINE DURING PREGNANCY? [ more ]
clz81 I used Aquaphor as an alternative. Zinc Oxide is probably fine as Jan suggested. I believe the concern was potentially getting too much Zinc if used in large quantities (in excess of what's in prenatals). [ more ]
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J-Pouch ForumsPouchitis
Mayo Clinic in Rochester
LeftieLeftie
TE Marie Oh no you had my favorite tests of Mr. Barium and Endoscopy choke, no fun Are you waiting for the results in Rochester? One thing about them they can cram in a lot of procedures in a few days. I've been complaining for a week about my endoscopy and dilation a week ago. I ended up with a partial blockage because, as I discovered, the medication put what is left of my intestines to sleep. So I hope you are/were careful and didn't go through the same pain. Please let us know what they find out. [ more ]
MNpoucher Well I didn't end up getting away with just the ultrasound lol. They weren't able to find out anything with the ultrasound and I had to go back for an upper endoscopy and a scope of my pouch. They just found a small area of pouchitis on the pouch and took some biopsies which I'm still waiting on the results. I also had to do the barium x-ray the next day and am waiting on the result of that too. They said I may have to switch antibiotics because it is possibly causing me to have too much... [ more ]
TE Marie It's nice living close enough to go there. I've not had an ultrasound of my pouch yet, sounds a lot better than drinking contrast or barium It will be interesting to find out what the ultrasound uncovers. [ more ]
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J-Pouch ForumsGeneral Discussion
Laproscopic or traditional?
L LisaY35
mgmt10 I'm a fan of laparoscopic whenever possible for any surgery. Recovery time is faster plus is reduces scar tissue building up. That was a huge deciding factor for me too when I was choosing my surgeon. [ more ]
LisaY35 Thanks again for the feed back. I am meeting with my surgeon here next week who does not do laparoscopic and then another one in a few weeks who does do it. This whole thing is a huge decision in more ways than one! [ more ]
KiwiPoucher I had laprascopic procedures. There are 7 porthole scars a 3 inch scar to the left under my tummy button and a loop-ileo scar. Very happy with it, although the fact it was all being done laprascopically did mean that in my mind I sort of downgraded how major an op it is, so was quite shocked when I came round!! Good Luck. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Painful Bladder
K KiwiPoucher
little greeny Sometimes when I have pouchitis it manifests like a UTI. There is no scientific reason I can give for this except for experience. That is why I also agree that maybe you are right and are over using your muscles. Hope you feel better soon! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Disability questions
fqfq
Jan Dollar Not sure what the surgeon's point is when he says none of his patients are on long term disability. Does he think of it as a badge of honor or that other surgeons are less adequate because some of their patients are? There's a first time for everything. My surgeon told me I was his first patient with complications after j-pouch surgery. Guess I broke his record... Perhaps if her surgeon is releasing her, then it is time for her to begin seeing a GI, since her problems are not surgical. Jan [ more ]
TE Marie I sent her an email and asked her to help here. I hope your fellow Californian sees my email tomorrow as she is leaving the state Friday. She maybe released as her surgery is complete and the wounds healed up but that doesn't mean that she is able to do her job yet because of the factors you mentioned. If it were me I'd have someone, like you, call the state agency to ask about this for her. She may be stressed and they should be able to answer questions without knowing the specific person. [ more ]
fq hi thanks for your responses. it is state disability i believe. Short term disability has run out (4 months?) so now it is becoming long term disability that she needs to apply for. The doctors have to support it though. I saw the application. It asks for ALL doctors names and contact info. So if they contact this doctor of hers (the CR surgeon), that particular doctor won't support her, and that could cause it to be denied, right?. The disability office said she needs to also complete... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Give me three reasons why I should be dilated
AwwwwwCrapAwwwwwCrap
CC Rocks I had surgical dilation done. had all 3 of my surgeries at Clevleand Clinic. My takedown was October 7, 2010. I had problems emptying, Dr. Costedio did my dialtion under a twilight anesthetic , could not finger dilate was too bad. I was fine after not a big deal. [ more ]
kk I was told I have cuffitis and given canasa and told to have pelvic floor therapy. Didn't think I even have a cuff since surgery was done in 1985 so then doctor said it does not specify type of inflamation. For 9 yrs. I was told pouchitis. I would be willing to bet the ulcers have always been in the same area. he also told me to eat more smaller meals and drink lots of water and drink can't remember right now what b/c I didn't see a difference. Its to make it more formed but soft. I have... [ more ]
NurseAlex Your situation sounds so similar to mine! 7 years with no issues then I had a bad stricture causing a partial blockage requiring surgical dilation. I had a bad case of pouchitis and ended up after several dilations, antibiotics, etc., at the MAYO being treated for chronic cuffitis. Don't mess around with this, while it could be a very minor thing, it may be a recurrent issue that has to be followed. I now do a whole regimen of creams, suppositories, Levsin, daily dilations with gloved hand,... [ more ]
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J-Pouch ForumsGeneral Discussion
Longterm Lomotil Usage
TinCanTinCan
Disneynut Yes, it did. My surgeon wouldn't prescribe it after a few months and made me switch to Loperamide (Immodium) because it was a narcotic. I get the Loperamide prescribed by my surgeon because there is a type that isn't tablet that the pharmacy has, it's a capsule and I get 240 at a time. The tablet must have gone through me too quickly because it really didn't work. I usually take two capsules a day (one in the morning and one at night) and don't feel fatigued at all. [ more ]
TinCan Thank you for your replies - they have been very helpful. While the lomotil works quite well for me, it also drains me of all energy. Since starting the drug I have been unable to complete my usual 5K run. At about the midway point I feel like laying down in a ditch to take a nap - not good. And this after only taking 1 pill per day! Did any of you experience fatigue while taking lomotil? and did it pass with time? [ more ]
Laurie49 I too have used it on and off since 1996 and have never had any ill side effects. [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch. Help
FM Former Member
UCWarrior2010 Hi PKitty...I have also been on Vedo for about 4 months. I have my fifth infusion on 31sr Dec. I did see some improvement initially. The bleeding stopped, starts having formed BMs but was still going to the bathroom 4-5 times a day. However, things have gotten worse over the past few weeks. The bleeding started again, the stool is loose now and I am going to the bathroom more often with urgency. I am waking multiple times at night which is why I am posting this at 5:30 in the morning!!! So,... [ more ]
Pkitty UC Warrior - I am also on vedolizumab 4 months in and not seeing much improvement - although I am now able to sleep through the night which is a plus but otherwise still going to bathroom 7 times a day. How are you doing on vedolizumab? Is it working for you? How many months you been on it? [ more ]
UCWarrior2010 Marianne - Do you mind sharing why you decided to get the surgery done in Phili after meeting with Dr Bauer? What about your meeting with him made you decide not to go ahead with him? Sorry for being so nosy, but I am really curious as I have a consult with him coming up and would love to know the reason. Thanks a ton in advance!!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Grumbling Pouch!
M Matt1701d
clz81 I do manage my chronic pouchitis with antibiotics, however, I was on a prednisone pack for a week for an issue with my shoulder. The steroids did help a lot. With the number they did on my body when I was 14 (osteopenia), I shy away from them now. But I figure that they probably can't too too much harm once a year or so to calm down the inflammation. I haven't tried any of the UC meds. I don't have cuffitis at at all, but a lot of people with pouchitis also suffer from this, and get results... [ more ]
Matt1701d Thanks Steve, i might query about Sulphasalazine, haven't had that sine the old Uc days. I seem to remember that it was quite innocuous... [ more ]
ElmerFudd Typically doctors go the antibiotic route to treat pouchitis (cipro, flagyl, others). But all of our old friends would probably be helpful too: sulfasalazine (has helped me, and found one study supporting it's use - it is an anti-inflammatory and an antibiotic of sorts), prednisone, Entocort, etc. The hard thing is all of these are hard on the gut by themselves while treating inflammation so you have to find what works. Steve [ more ]
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J-Pouch ForumsGeneral Discussion
best time of day to take metamucil
G Guest
ISeeUC Tom- I've found that one "flat" teaspoon of the powder at lunch lasts me one to two days; more than that and my output increases and I have the rough nights you describe. Try dropping the dose to see the least amount you can get away with taking. Good luck! [ more ]
mgiamartino i was also curious, after reading tom's post--how much are people taking in the powder and /or wafers? tom--i take mine in the morning and sometimes near dinnertime as well. i currently use the powdered, but thought the wafers might be more convenient when i'm back to work... [ more ]
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J-Pouch ForumsPouchitis
confused about.xray results. please help
S Sara1986
Jan Dollar If you are worried about taking a purgative laxative, how about just doing a Fleet enema? And if you are worried about the saline in that causing more dehydration, just pour it out and use plain, warm tap water, for a pouch rinse. You can repeat it until clear and your pouch is empty. Jan [ more ]
Sara1986 Thank you Spooky for taking The time to explain this all to me. I still feel very dehydrated so im a little hesitant to drink some magnesium citrate because it will dehydrate me even more by having all those loose stools. I better call my GI back and see what he recommends me to do. Ive been drinking tons of gatorade but i still do not feel better. Hopefully my Dr Will have more answers. of feeling like crap all The time. [ more ]
Spooky Hi Sara, Sorry you are feeling poorly and that you are getting confusing results! It could be that you had pouchitis, though you may not have pouchitis now. It may have cleared up with antibiotics. I am just speculating, but based on the x-ray results and your GI's advice, it sounds like you are retaining stool. Antibiotics prescribed for pouchitis can thicken the stool, making it harder to pass, and the urgency and watery stools you were having before could have been signs of a partial... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
fistula
D DebAD
n/a Hi DebAD - can't find your old postings, so ... did you have a failed fistula repair? Do you have a seton? The area around the seton (near the vag. area) does get somewhat sore/red from time to time, so I use calmoseptine on it, that seems to help. I'd recommend seeing your CR surgeon and/or letting him know what's going on with it. You may need antibiotics if an infection is brewing. [ more ]
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J-Pouch ForumsGeneral Discussion
Feelings of pre-takedown drainage vs. post-takedown BM's?
bootstrapbootstrap
lixxie My experience was that pre and post sensations were quite different, ie. pre was no indication of how post was going to be. I remember the mucous being quite slippery, and just like you said, sometimes a fair amount, and sometimes a little. After takedown, I remember having a spill of super liquid poop, literally water, in the hospital. Plus, discomfort from gas. But once I started eating, things improved greatly over the next few days. I have a pretty poor memory in general, but I do know... [ more ]
MO M When i had my ileostomy on average i would have to go ones every few days days, once in a while more than once a day, i did not have the urgency then that i sometimes have now, there usually was some blood in the stool, tho i associate that with the fact that i still had the bottom portion of my colon attached. [ more ]
CeeeeCeeee I, too, was concerned about the same thing. Happy to say there was no correlation between pre-takedown seepage/oozing of mucus and what it was like post takedown! Whew! [ more ]
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J-Pouch ForumsGeneral Discussion
Advice needed - Should I get a jpouch?
U UCWarrior2010
UCWarrior2010 Thank you all for your sharing your experiences! They really help me put my symptoms in perspective and make me realize that I am not being unreasonable by not being happy with my current quality of life! Sometimes I wondered if I am just expecting too much and I should be happy that my symptoms are not worse!!! I have set up a consult with a surgeon for next Friday. Hopefully, that will help me get some more clarity and make a firm decision. [ more ]
Mhg26 Hey UC Warrior, I was in almost the exact same boat as you were 1 year ago. I was diagnosed with UC in February 2011 during my sophomore year of college. It was an incredibly difficult life change that ultimately wreaked havoc on my body and mind only after 9 months. I was on prednisone, tons of different 5-ASA's, antibiotics here and there, remicade, and high doses of pain killers. I also looked into natural remedies like probiotics, fish oil, slippery elm, and meditation. The only... [ more ]
ElmerFudd UCWarrior, If you have run that gamut of meds and none seem to work, then yes - you should consider surgery IMO. It seems like such a huge step, and indeed - it's not one you can go back from (at least until they can grow you a new colon in a petri dish ). My daughter was 7 and about like you are - went through all meds, and the only thing that did anything was high doses of prednisone, and even that did not put her into remission. She got to the point where she was up 6 or more times a... [ more ]
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J-Pouch ForumsGeneral Discussion
Possible to go back to Jpouch after going to bag?
P Pkitty
Cataja I have no issues with my unconnected j-pouch. I have a end ileo. My j-pouch still secretes mucus, so it empties when I urinate. [ more ]
Mhg26 I'm sure it can be reversed as many other have talked about. The only issue I see with it is the amount of time you spend with the pouch inside not functioning. There haven't been many studies in areas like this, with a potentially useful organ being unused for long periods of time. I'm sure we all know the term "if you don't use it, you lose it". Well, this actually can apply to several things, for instance if you dont use your muscles, it will cause atrophy and they will shrink in mass. I... [ more ]
ghostthepast a disconnected j-pouch can always be reconnected or modified into a k-pouch.sometimes some time is needed for the j-pouch to heal.after my second ileostomy i waited 5 years or so and had the take down.my j-pouch worked but had chronic stricture issues.then it failed again after 6 years.so i had it disconnected but left intact for future possible surgery. [ more ]
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J-Pouch ForumsGeneral Discussion
Obstruction/Blockage ?
TE MarieTE Marie
TE Marie Thanks for the good advice Sharon and Elmer. Since Dave confirmed this was the problem I have been sticking to liquids and easy foods, like turkey sandwiches. It has bothered me for several days and still is sore so I'm keeping it up. I don't take fiber or Imodium much any more. (It is really hard to treat my cuffitis without the Imodium but I do the best I can.) [ more ]
ElmerFudd When talking to doctors they make it clear there is nothing you did or could do to cause or prevent an obstruction. Normally they are caused by adhesions or kinks in the bowel and it just happens. Of course, if you know you have issues like this it is always wise to chew your food well, be picky about eating things that don't break down, and keep the grape juice flowing. When I'm on any bowel slower, I drink grape juice with breakfast by habit to make sure things are flowing. Steve [ more ]
skn69 How are you doing today??? Feeling any better than yesterday??? I agree with David that even partial anesthetic can give your guts a reason to nap for a while...may take a couple of days before they feel like their jolly selves....eat light, drink lots and keep track of what they are up to (bloatty feeling? Sluggish? Things feel like they are not going through?)... Walk as much as your poor feet allow you to and do not take too much lomotil or fiber until it is back to normal. Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anyone know about this???
dennyp3dennyp3
ElmerFudd Denny - as Jan can tell you I've been there and done that. I too have a rheumy who can't find anything she can treat based on symptoms / evidence, and it doesn't appear I have spondylitis. After a few years with my rheumy, and switching primary docs to get some new ideas, I ended back at the pain clinic and was finally diagnosed with fibromyalgia too. She did say she couldn't definitively say whether my pain was caused by: 1) osteoarthritis pain 2) inflammatory arthritis pain 3) fibromyalgia... [ more ]
Jan Dollar Absolutely! Not all rheumys are created equal, and you need one who really listens. Time and again I hear of patients whose rheumys will not diagnose because "physical evidence" is not present. Well, sometimes it takes many decades for those changes to become evident on imaging, and by then, the damage is irreversible. Plus, you are suffering in pain all that time. I also agree that being able to express how you feel is important. If you think you may have enteropathic arthritis, here is a... [ more ]
dennyp3 Everybody, thanks for responding. I do see a rheumatologist, but it's as if he downplays the pain I feel. I don't know how to put into words to him how I feel in a way that he takes serious. I'm really considering changing to a new rheumatologist that maybe I can get through to better. I must be saying things wrong. I am lately feeling really crappy in the abdominal area. I'm trying to just breathe through it, but I'm afraid it may land me in the ER soon. [ more ]
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J-Pouch ForumsGeneral Discussion
Whether to get a pouch?
G GM
ElmerFudd Pouchitis can seem like UC symptomatically. However, when I have a bout, it's nothing near as bad as UC. So even with pouchitis it can be different for different people. For me it's lots of gas, poor emptying (never feels like you get it all out), frequency increases, more fluid. But a round of Flagyl and I'm good again. I actually take sulfasalazine for peripheral arthritis and have found it treats any inflammation in the pouch nicely, avoiding the pouchitis cycle almost all the time. As... [ more ]
GM Thanks everyone for your advice, I still have not made up my mind, but was wondering if someone can tell me what pouchitis is like, I went through months of cramps and bloody diarrhea with my UC is that what it is like? and people mention that they found they have to avoid certain foods, is it certain things or varies from person to person. [ more ]
AllyKat I agree with your doctor. If your adjusted and doing fine,great! You will always be disease free! [ more ]
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J-Pouch ForumsGeneral Discussion
fecal transplant for C. diff
kathy smithkathy smith
lhh65 There was another good article on topic in October issue of Discover, titled "Tap the Healing Power of Poop." http://discovermagazine.com/20...ealing-power-of-poop As someone who suffered mightily from recurrent C. Diff. on top of UC, it's hopeful to see this issue getting attention it needs -- and to see there is promising treatment. I had heard about fecal transplants when I was sick, but even a couple years ago, it was talked about as rare and hard-to-get treatment. Now, it seems, things... [ more ]
Jan Dollar Wow! I'm amazed at the success rate of 85-90%! I think the future is in this treatment. It makes perfect sense. Thanks for the link. Jan [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Advice from other people with J Pouch
TheaThea
skn69 Thea, With the sleeve surgery you may have problems eating carbs in large quantities (or any quantities at all) so you may want to make yourself chicken meat balls with rice inside them to give yourself an easy and digestible fast food...it works with ground fish too...just mix some cooked rice with the ground chicken or fish and an egg and cook or bake in your favorite sauce (tomato may be too acidic in the begining) but yoghurt based sauces are pouch friendly...then you can easily dose... [ more ]
Rowans mom We bought a coco bidet and daughter has zero butt burn now. [ more ]
NewPouchMike Thea, it was 6 months after takedown for me before I finally started to feel pretty confident it was going to be ok............ I had horrible burn...and lack of control etc.... A couple thoughts for you... 1)Try doing most of your eating early in the day. Eat big breakfast. Potatoes and pancakes were great for me (and still are). Thank god for potatoes. I did (and do) well with either baked, mashed, hashbrowns, homefries...even french fries...... They bulked up stool and they didn't seem to... [ more ]
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J-Pouch ForumsPouchitis
What is this feeling???
DairyAirRNDairyAirRN
SallyJPouch I totally agree with you on that one, Jan. Mine have come out of the blue . . . . as my last surgeon said, "it is inevitable". Sorry for the sour words! [ more ]
Jan Dollar Generally, it is not a specific food, unless you ate crazy amounts of high fiber food. Usually, it is just your gut kinking from adhesions, and if you have overdone the bowel slowers and/or fiber supplements, that can add insult to injury. In my case, when it occurs, it is out of the blue and I have done or eaten nothing unusual. Fickle finger of fate. I just don't want you to get the idea that "if only I avoid "X" food, I will prevent this from happening." it is more random than that. Jan [ more ]
CTBarrister I would be careful eating corn on the cob, or large quantities of any of the very fibrous foods, like nuts, spinach, mushrooms. I would also be careful with taking too many anti-diarrheals. I take antibiotics which naturally thicken the stool, but one time I took too many imodiums and I had a partial obstruction after eating a large serving of banana pancakes, which are otherwise a harmless food. I did not have a bowel movement all day and then started feeling knotted up and I was eventually... [ more ]
See all 10 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Embarrassing Question But...
FM Former Member
Former Member claire955- The flushable wipes do the trick! I use them every time i go to the bathroom. I don't feel that it's necessary to run & freshen up right before, because I always feel fresh! (I feel like I'm advertising for them!!) They make individual packets too. Good luck! J-pouch & pregnant!! [ more ]
nbm Wow. It is pretty harsh to start evaluating whether or not suggestions or responses to a question and then to deem them entirely unhelpful. I If someone doesn't like a response it is probably best to just disregard it--no reason to put someone down when they are trying to be helpful. [ more ]
Kate1026 CT- I don't appreciate your responses, not because you're male, but because they tend to be unhelpful and mostly talking about yourself. I don't read any other boards so I can't comment as to what you say on those, but I have yet to see you contribute something useful over here. [ more ]
See all 20 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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