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J-Pouch ForumsHelp! Need advice now!
Tired of the pain........
K KatieO
KiwiPoucher Buscopan Hyoscine Butylbromide tablets work well for me to stop the spasm pain, they don't get rid of it entirely but enough to get by on. If it is really bad I take 10mg Oxynorm which gets rid of the pain and slows the bowel right down. Does not make me drowsy and I try not to do it too often. Hope you find some relief soon. Caroline [ more ]
Subzeromambo I take a very low dose of valium for spasms too. I don't feel any different but the spasms decrease. I found changing my diet to include as little animal fat as possible decreased the spasming. Right now I have pouchitis but no spasms. As to the weight gain...have you talked to your doctor about it? Twenty pounds is a lot to gain in such a short time period. It must feel very frightening and depressing. Personally, I would get off that drug as soon as possible. The health risks of being... [ more ]
Uc-Danielle My tolerance for pain medications and the Valium is high. It just does enough where the spasms stop. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouch advancement SSO opinion for cuffitis
J jeane
Auntie JoJo Re: ostomy re-dos. I had 3 ostomies; one from Johns Hopkins with a poorly constructed cuff; a second from the pouch re-do at CCF and the third 3 weeks later from a surgical error. All 3 times the ileostomy was on the same side, same place. This was in 2000-2001. Perhaps there is new research out there suggesting that changing sides is a good idea. [ more ]
jeane Liz, I question some things in retrospect as why augmentin was thrown at me very quickly after my first surgery due to leakage. My takedown was also scheduled two weeks early due to what my surgeon called diversionary pouchitis. My surgeon commented my jpouch would be the size of a small football when it stretched and seemed pleased with the size. Not sure if that means anything. Last scope showed some mild inflammation in the limb snd again he was not concerned about it and discussed pouch... [ more ]
liz11 jeane.. my guess is that Dr. Shen is going to personally want to scope you. I cannot imagine him not doing that. In fact, with me, even after Dr. Shen scoped me, figured out what was wrong, and ordered other tests.. Dr. Remzi also scoped me under full anesthesia in the operating room BEFORE they came up with a definitive plan of action. I ended up having 3 scopes in 5months. One from my local GI, one from Shen, and one from Remzi. And all in less than six months from takedown. Also, I try to... [ more ]
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J-Pouch ForumsGeneral Discussion
two months post J-pouch and my son still suffering
F feirs1
KangaRoe Hi Liz, I had my pouch done 20 years ago and a few months out I seem to remember I was going more than that. I remember asking my doctor about this same thing and being worried about it. It takes a while for the pouch to learn how to take over the job of the large intestine. I seem to remember the doctor saying that it could take many months and maybe even up to a year. What your son is going through seems consistant with what I went through and what the doctor told me. As the months go by... [ more ]
Connie My son's frequency immediately after TD (at age 10) was around ten times per day and has not changed much in the 11 years since. For him, it is still way better than an ostomy, the products for which caused enormous skin problems. We bought a bidet attachment before the TD, which has been a great asset for preventing butt burn. The tendency to get BB seems to decrease after several months. He has always preferred Imodium (loperamide) to Lomotil, so your son might want to try that. Also some... [ more ]
Richard FH I would certainly research the effect of bile acid and enzymes on the digestive system and the benefit of lowering and controlling said Sercetions. Cipro and several other antibiotics when taken will lower enzyme output due to the fact enzymes are not so different to bacteria,There has been some good results in limiting the body ability to absorb the necessary ingredients.1 Statins (works very well high risk of side effects). 2 Questran as someone mention before ( predecessor of statins,... [ more ]
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J-Pouch ForumsGeneral Discussion
advice to reduce frequency and gas
FM Former Member
PaulS Frequency seems to be a really individual thing. I've tried lomotil, immodium, metamucil, eating less (which caused gas) and a few other things. I couldn't find a link between medication, eating habits and frequency. I still take metamucil. I normally have 8 to 10 BMs a day. There are times when I only go 4 to 6 times a day to the bathroom. When I started adapting to my new system, I couldn't eat vegetables or fruits. It brought to me cramping and excessive gas. But meanwhile I can and do... [ more ]
Laurie49 Hi fishgirl, welcome to the site. My suggestion would be Beano or Gas X -- if you haven't already tried them. And, I'm sure after three years, you know experimentation is the key in terms of weight and gas. I'd also suggest that you stop counting your trips to the bathroom. For me, once I just accepted that I am going to be going more, suddenly it became a non-issue. It was just my new normal. Again, in terms of gas pain -- try everything you think you should (fiber powder in your water,... [ more ]
mgmt10 One tip I can offer is do not skip meals. I find I get grassier if I don't eat anything. I second the Beano. It works for me on helping with the gas. [ more ]
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J-Pouch ForumsHelp! Need advice now!
marathons and more
MR Michelle R
Subzeromambo I take liquid vitamins and minerals in a small glass of orange juice plus 5000 IU of Vitamin D3 gel caps. I had horrible stomach pains from solid vitamins and my body was not absorbing as much as I needed so I switched to the liquids. My test results have been normal for two months now. Unfortunately high fiber increases my motility which has never made any sense to me. I expected high fiber to slow things down. Our bodies are so individual that it is hard to predict how each of us will... [ more ]
Michelle R Thanks!!! I knew I wasn't losing my mind...haha..I'm terrible about going to the dr...which is how I ended up nearly dead and having and emergency colectomy in 2005... After 5 years, I just recently had a pouchoscopy and I have a slight case of Pouch-itis. He also stretched me, but I dont' see much difference in emptying. I'm waiting for my follow up to talk to him. It's become unbearable lately where I'm paranoid of leaking at work. (I work in a classroom and can't just up and leave) I... [ more ]
suebear Ahh....more information is helpful. You might need something stronger than imodium/lomotil if you have tried those. Possibly codeine? Have you always had leakage or is it only when you exercise? Sue [ more ]
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J-Pouch ForumsGeneral Discussion
blockage
FM Former Member
Former Member Interesting...I am repeatedly hearing that I need to keep moving, massage my stomach area and now you add bumping around. My natural tendency is to curl up or lie down.....I will definately keep moving next time I feel a blockage. Thanks. [ more ]
CeeeeCeeee We have some railroad tracks in my area. My surgeon jokingly (or not) told us that when we feel an obstruction coming on, to get in the car and drive back and forth over the bumpy railroad tracks! Maybe he's tired of dealing with his patients who tend to get obstructions! [ more ]
Former Member Thanks jan, this is very helpful information. [ more ]
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J-Pouch ForumsGeneral Discussion
Memory loss
C Cate87
kathy smith I have memory loss after trauma. One year I was having a horrid time at work and was called into a meeting with all the big wigs. They were trying to get me to admit to something without telling me what it was. We left the next day for a 1-week vacation. I remembered absolutely nothing about the vacation. I kid you not. When we got back, DAMN BRIAN would be telling people about the things we did and saw. I just looked at him like he was crazy because apparently I wasn't even there. I... [ more ]
asdfqwer I had memory issues after my two surgeries. I was training in at work and kept forgetting the things I was trying to learn, so I was assumed an idiot by my coworkers and treated poorly, although they're known to treat many poorly. Anyways, there was definitely something there, for maybe 3-5 months after the surgeries. I was also thinking it could be from coming off the prednisone I was on for over a year. Don't know which of the two did it. I mentioned my memory issues to the surgeon and she... [ more ]
little greeny Memory loss can be a side effect of anesthesia however I usually find that I have memory loss/word mix ups when I become deficient in certain vitamins (especially iron/vitamin b12). Mental health issues such as anxiety/depression can also be associated with temporary cognitive impairment. Finally, do you get enough sleep at night? I know that I usually sleep about 10 hours a night because I get up frequently and don't get as much rest (I know that is hard to do in grad school-i've been... [ more ]
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J-Pouch ForumsGeneral Discussion
need med advice for depression/anxiety soon...
G Guest
Jan Dollar Vicodin shouldn't cause diarrhea. If anything, it would slow things down. Good idea to try halving the dose when starting out though. Jan [ more ]
Guest i got ya. the night i took the celexa i also took vicodin at the same time. vic never gave me diarrhea before but that was awhile ago. ill cut the celexa in half. thanks... [ more ]
Guest i got ya. the night i took the celexa i also took vicodin at the same time. vic never gave me diarrhea before but that was awhile ago. ill cut the celexa in half. thanks... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Small bowel series
S Solomin
Jan Dollar My concern is that there is an undiagnosed upper GI condition that would not be addressed by pouch reconstruction. I can see going forward with the surgery to improve pouch function, because your pouch shape could be causing constipation symptoms. But, if your pouch shape was the source of your upper GI symptoms, you'd have a lot of distended small bowel near your pouch from chronic stasis and a backing up of stool. Maybe there is a motility disorder, or Crohn's that could not be detected on... [ more ]
Solomin Hi Jeane, My file has been reviewed (in person) by 6 surgeons and one academic doctor who specializes in jpouch issues. All have said that I am in need ot jpouch reconstruction surgery. I did have a CT scan (two within the last 6 months) and outside of inflamatory stranding (whatever that means) they have been normal (i.e. no bloackage present). I keep on having what appears ot be partial obstructions on a fairly regular basis. I have a complete history of several tests which show the shape... [ more ]
jeane Solomin, I am not an expert, but your symptoms do not sound like pouch dysfunction to me, however if I recall you mentioned your pouch is misshaped at this time and I understand you have been suffering. You would need a pouchoscopy with biopsies, a pouchogram test and an MRI/CT scan with and without contrast to really rule out pouch dysfunction that requires pouch advancement surgery. Blood tests would be helpful also. I have just had all but the pouchogram for my recommended pouch... [ more ]
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J-Pouch ForumsGeneral Discussion
Cipro Flagyl
Mental KaseMental Kase
Jan Dollar Yes, there is a patient assistance program for Humira through Partnership for Prescription Assistance. Jan [ more ]
Mental Kase I'm thinking that Humira may be on my menu in the near future. Is it an Abbott Labs product? Do they have a Patient Assistance Program? I hear it is quite costly. Thanks, MK [ more ]
Mental Kase Thanks for sharing your Flagyl experiences. I think that many of us have a love/hate relationship with Flagyl because it does work well most of the time but it also causes some unpleasant effects, the tingling finger tips, the horrible taste in the mouth unless you swallow really FAST! I'm finally to that tipping point where I am taking so many meds for so many ailments that I can't sort out what is reacting with what..... Now that I have lost my insurance I will be dropping many of them... [ more ]
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J-Pouch ForumsGeneral Discussion
Recent hernia surgery and loss of control......need some reassurance
H Hope 777
Hope 777 Thanks so much, you guys. Just another surprise in j pouch freedom, I guess. I was a little better last night but I think you are right about the pain. I have so much pain and pulling I do not think I am able to relax enough and push enough. I am going to try to keep an eye on my medication time because I do not like taking meds. I think I am going to long without it. Thanks for the hugs......really appreciated! [ more ]
skn69 I am so sorry Hope, Not fair! The only thing that I can think of is that the swelling in the region + the pain is doing this to you and that once the swelling is down (which means that some of the pressure is off too) then you should regain control...there honestly shouldn't be any long term incidence on the pouch for an abdominal hernia repair...not the same region...just give it time and do what you have to do to protect your clothes and bed in the mean time. I know that it is so... [ more ]
Subzeromambo All I can do is send many virtual hugs your way. I don't really know what to say other than I would imagine it will take at least a month before you regain any control. Keep doing the anal exercises? I hope for the best for you. [ more ]
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J-Pouch ForumsGeneral Discussion
Dates
skn69skn69
CTBarrister Well, I did get some butt burn after drinking white zinfandel during happy hour Sunday afternoon. I never drink white zinfandel, but the hotel was offering free wine and beer and that was the only wine that was acceptable as I do not like chardonnay and the other two wine choices were reds, which are diarrhea city for me. Apart from that, Sunday for dinner I had a Florida lobster tail and Key West Shrimp (they are called "Key West pinks" and are harvested from local waters). The lobster was... [ more ]
skn69 You are probably the envy of (almost) every J poucher on the site CT...being able to eat it all and be happy afterwards! Yes, it is very good...I love those dates and so does my pouch! (by the way, they are yummy stuffed with almond paste too) Sharon [ more ]
CTBarrister I was thinking of this thread tonight. I am on vacation in Key West, Florida aka the "Conch Republic" and went to a tapas restaurant tonight called Santiago's Bodega. One of the things we ordered was stuffed dates. The dates were stuffed with goat cheese, wrapped in prosciutto, impaled on a wooden toothpick and broiled. I assume they soak the toothpicks (they call them "skewers", but they are really toothpicks) to prevent them from catching fire under the broiler? Anyways they were VERY... [ more ]
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J-Pouch ForumsPouchitis
chronic pouchitis - what does scope look like?
clz81clz81
CTBarrister I have no urgency whatsoever as long as the pouchitis is under control. It's just that we are constantly eating and drinking and we Pouchers have food go through us quicker in the normal course anyway. The Conch Tour Train that goes all through Key West is about 1.5 hours but they have a couple of stops along the tour at which there are men's and women's restrooms. I think they get that people are eating and drinking a lot, and even coloned people need to relieve themselves. But it's really... [ more ]
CTBarrister First line of threatment is antibiotics: cipro, flagyl, augmentin and xifaxin as well as others. In my case it is the only treatment that has worked and obviously from my pics, it has only kept the pouchitis "simmering" all these years. If I am off antibiotics one week the simmer goes to a boil at light speed. [ more ]
jeane That's funny...19 years ago when I had UC, I was never concerned about needing to find a bathroom unless, of course, I had an acute flare up before meds tamed it. Now I seem to be much more aware of bathroom situations and really gross ones just make me sick. I wonder if Kelly Magillis's restaurant is still there. I loved the tours also and the end of the pier and yes..the endless bars and party atmosphere!!! We actually did a sunset booze ride/snack ride on a nice sailboat that was a lot of... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I need advice regarding surgery
S Solomin
clouseau Solomin, The young 30 year MD with the experience sounds like a very viable option from all the comments I read. Young is much better than old when it comes to a surgeon. My thoughts are with you and hope the very best for you. [ more ]
TE Marie I agree with Ant1982. Can you get your CTscans, MRIs and whatever tests reviewed by an expert at the Mayo or Cleveland Clinics? How can you decide what to do when none of the surgeons appear to agree and/or have little to no experience. It looks like whoever would be performing exploratory surgery. I'd suggest you make an appointment but think I remember someone on here talking about getting someone at the Cleveland Clinic to review tests, such as those above. If that doesn't work out then... [ more ]
Ant1982 I had surgery done in the UK - and I was lucky enough to have one of the most experienced and skilled surgeons here. In his opinion a surgeon isn't truly "proficient" at pouches until he / she has completed 40 pouches. This makes it difficult for most surgeons to get the experience they need as in the average large teaching hospital (in the uk) they are likely to do 2-4 of these operations a year. My surgeon has an excellent success rate and is confident that experience is key as men and... [ more ]
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J-Pouch ForumsGeneral Discussion
question on pouchoscopy biopsy results
J jeane
jeane Thanks Kathy. My pouch function is pretty good to be honest. Not sure if that will change when trying to get off cipro. The stricture and cuffitis are giving me most of my headaches. [ more ]
kathy smith But I'll bet you'd like some sort of clue as to why you're still not doing as well as you'd like. I'm so sorry you're not experiencing a perfect pouch. Hopefully the your GI and CC will have some real answers for you. kathy [ more ]
jeane Just when I think I cannot get through the day, I have been given hope. Thank you Jan for taking the time to respond. You have helped ease my anxiety over this issue. Have a blessed Thanksgiving. . [ more ]
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J-Pouch ForumsGeneral Discussion
Newbie
G GraceL
GraceL Tom did you have the bleeding before your pouch was created? If you did I'm gla to hear its healed up this is my huge concern as its really gotten to me lately and can make me feel really down which is unusual as I'm a very happy go lucky person. I'm so glad to hear that things are turning out to be such a success and gla you got hymroid under control. Apart from your initial issues are you happy with the pouch. Sorry so many questions but I'm like this I like to research everything fully... [ more ]
Guest the bleeding and pain is likely from your remaining colon and rectum they havent got to yet and mine stop after j-pouch creation. ive had a lot of struggles with my takedown but 2 months out im starting to see progress especially getting a difficult hemorrhoid under control after it thrombosed making it even worse. it got my attention and i think things will rapidly improve. i wasnt treating the hemorrhoid til after in flared to a thrombosed state so in a way it was a silver lining. i... [ more ]
Guest the bleeding and pain is likely from your remaining colon and rectum they havent got to yet and mine stop after j-pouch creation. ive had a lot of struggles with my takedown but 2 months out im starting to see progress especially getting a difficult hemorrhoid under control after it thrombosed making it even worse. it got my attention and i think things will rapidly improve. i wasnt treating the hemorrhoid til after in flared to a thrombosed state so in a way it was a silver lining. i... [ more ]
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J-Pouch ForumsGeneral Discussion
ladies...help
Akk3769Akk3769
GraceL I'm not speaking from the pouch expierence I'm making up my mind whether to have the pouch or permanent ileostomy but I know it took at least 4 months for my period to come back after my sub total colectomy in February and now some months I so t have them and the. Other months I could have them twice a month. I think it's part of the healing process if your energies vitamins etc are needed else where the. Your body concentrate on that and your periods will go. I know that's how it was... [ more ]
skn69 Sounds about right to me... Sharon [ more ]
Uc-Danielle This is completely normal. After my first surgery I did not have my period for 3 months! [ more ]
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J-Pouch ForumsGeneral Discussion
general query on diet etc..
MT Mary Tara
Guy with j pouch Be careful about sugar,,, it could cause you pouchitis. Try honey instead.... [ more ]
cassidy I never restricted my diet.. But for some reason chocolate occasionally causes irritation during BMs.. Not enough to cause a CHOCOLATE restriction. Take it slow and reintroduce things that you like to eat.. [ more ]
Jan Dollar We are all prone to the risk of occasional partial obstructions, caused by adhesions, and that is what it sounds like you are describing. When you have those symptoms, just ease up on solid foods and focus on liquids, until the symptoms subside. Otherwise, 3 years of restrictive diet!?! I can't imagine it! I don't think I waited 3 weeks! So experiment, but slowly, like Sue said. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Medical Marijuanna for UC and/or Jpouch
P Pkitty
bootstrap Oh! Sorry, must have missed that. Other than the research I posted, I can't give you much info on the effects of it on UC specifically from personal experience. I didn't try the tincture until things were really pretty bad... severe pancolitis, and NOTHING was helping me: no meds, diet, supplements, etc, could get things under control (except prednisone). It DID ease the stomach cramping from my UC when I took it, but didn't seem to have a whole lot of effect on actually healing my colon... [ more ]
Pkitty bootsrap? [ more ]
Pkitty Thanks bootstrap! Can you share how your situation is with and without the glycerin tincture? How many bowel movements with it and how many without it? Other effects (positive and negative)? [ more ]
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J-Pouch ForumsGeneral Discussion
8 month update (college student)
S SimpleX
Uc-Danielle Nope! I'm from Cambridge Ohio but go to school in West Virginia. I am almost done though which is crazy! I am feeling great but the cutting seton is miserable. [ more ]
SimpleX that's great! Do you go to school in Ohio too? Feel free to e-mail me at run1noodle@gmail.com if you want to meet up and chat [ more ]
Uc-Danielle I'm also a college student and I am barely 3 months post take down. I moved into school 3 days after I was releases from the hospital and was so miserable but now I feel great! Besides the fact I developed a fistula and had to have a cutting seton placed which is miserable I am doing well. I go probably 4-6 times a day, and I don't eat past 9 at night so that stops me from getting up at night! [ more ]
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J-Pouch ForumsGeneral Discussion
Very ill
ManchesterManchester
Jan Dollar Since this is viral, there is not much to do other than ride it out. However, if you have a fever for more than a few days, can't take in enough fluids to keep your urine dilute, or develop ANY shortness of breath, you need medical attention, and possibly hospitalization. I had a cold/flu thing a few years go while on Humira and it wound up progressing to bacterial bronchitis. Antibiotics fixed me up quickly, but I didn't need them until about 10-14 days after the bug first hit me. Jan [ more ]
Holly M you def. don't want to get dehydrated . [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help, Pain in the used to be butt.
BeckyMBeckyM
SallyJPouch Becky, you have been through a lot. I sure hope you get another opinion, as they suggested. I really feel for you. sally [ more ]
BeckyM thanks jan, yeah I was thinking that maybe in the 5 days in the hospital that maybe it could have healed up, I never hadparts of feces coming threw, more like just a browinsh/muddy looking watery discharge, I thought it was old blood.That is what the dr thought he saw as well,The pain and the fluid had been going on for about 6 months but just got really bad when i posted to you guys on here,(the pain anyways), i was just wondering if they could have seen it on ct scan and then it was gone... [ more ]
Jan Dollar Sorry about all your pain and frustration, Becky. There is no way a fistula could heal in the time it takes for you to go from the ER to another hospital. These things can take months or years to heal, if they ever heal at all. If the hole was so tiny it could heal in less than a day, it could not drain feces into your vagina. That said, that does not mean you did not have the pain and other symptoms you were having. So, it is very good news that this is not a fistula...but what in the heck... [ more ]
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J-Pouch ForumsGeneral Discussion
Well, that was embarrassing...
K KatieO
gleam Have no fear, I doubt anyone can top my embarrassing event that became the deciding factor to chop out the colon. I took the wife and kids to a small carnival that comes every year to our town. My oldest daughter age 12 needed to use the bathroom, a good idea I thought as I probably needed to go as well. We walked out and saw the yucky portapotties. Thankfully, Publix the supermarket was across the field. We decided that looked like a better option. What a long walk as I clenched the entire... [ more ]
Jan Dollar Too funny! As I am the plumber in the household, I tend to try to fix the toilet when out and about. Jan [ more ]
skn69 Great escape! Happens constantly here...I always prepare a quick exit strategy! Sharon ps. it is the ones that overflow onto my feet that freak me out the most. [ more ]
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J-Pouch ForumsGeneral Discussion
Mucosectomy/Pouch advancement
V vstRN
jeane Thank you. Sso is second surgical opinion [ more ]
TE Marie jeanne, I don't know what a sso is either but understand how you feel about your life escaping you. Please hold on for a while longer and give this non surgical approach to work. It could be the antibiotics causing problems, I've heard of stranger things. I've had too many antibiotics during the years and get C-diff infections. I hope you never have to deal with that. I had to go in for stitches Monday and along with a tetanus shot the urgent care doctor put me on antibiotics. I emailed my... [ more ]
dawn58 what is an sso? [ more ]
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J-Pouch ForumsGeneral Discussion
Headaches in the morning/Dehydration
MJ Manuel J.
KiwiPoucher I never drink straight water anymore, my surgeon explained that if you are dehydrated and your electrolytes levels are low in your cells, drinking plain water just dilutes the levels even more. [ more ]
Ant1982 Don't just drink water - drink re-hydration drinks which include the salts that your body needs in order to be able to absorb the water. There is a risk otherwise that you just the water just washes you through. [ more ]
KiwiPoucher Also should have said that I never have to go to the bathroom in the night, despite the extra fluids, so think that proves I get dehydrated overnight, hence the headaches. [ more ]
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J-Pouch ForumsGeneral Discussion
Routine Colonoscopy for Pouch
S samlc25
kathy smith samlc25 - I think that there are some things that could happen that won't necessarily make your pouch act up, so I think that's why some people/doctors think regular scopes are warranted. For instance, cancer might not produce any symptoms until it will be more of a problem to deal with it. I'm one of the errant pouchers, I've had a pouch for 22 years and have had 4 scopes. Do NOT follow my example. I'm doing well but that doesn't mean that I shouldn't be getting scoped more often. And for... [ more ]
commandz My pouch is fine, I have not had one day of problems with it. But they have found polyps in in when they check it, they biopys them and take them out. If they grow over time, you go right back to what you had with your colon, if they get big enough and eat through the wall, you could still get cancer or problems there of. You could do whatever you want, but you asked and we are telling you what we think. I would not decide myself but the the doctor tell me. I don't want to mess with cancer... [ more ]
Jan Dollar There are many considerations to determine your monitoring frequency if you have UC. The length of time since first diagnosis, the extent of disease (pancolitis being a primary criteria), findings of cancer or dysplasia, and any ongoing symptoms all are factors. While I think the notion of no monitoring needed as long as you have no problems has largely been discarded (although I still hear it), I also don't know that annual scopes are critical, since this is an ever changing concept. But,... [ more ]
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J-Pouch ForumsPouchitis
Pouchitis or Normal Post-Takedown Issues...
L Lawnsinger
feirs1 If it persists I would talk to your doctor. My son is only 2 months out of surgery and was having the same sypmtoms you described. He was just put on cipro two days ago and there has been a significant change already in his BM's both number and much much less watery. Just something to think about if it doesn't resolve. We are still way new with this so we will continue to wait and see. [ more ]
SallyJPouch Missy, I hope you feel better soon . . . the recovery is not fun, is it? You will get better and better. Sally [ more ]
skn69 What did you eat that was different yesterday? Did you introduce something new into your diet? Just a throught...and now would be the time to maybe try to keep a food diary to see what effects your pouch, the nasty BB (by the way, wash with water, avoid the TP)...and the rest. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
can someone explain beano please?
G Guest
Pouchomarx Try the Boost VHC. very high calorie. one 8 ounce can has 530 calories. I buy them through Edgepark Medical and are covered under insurance if doctor approves for weight management. [ more ]
Guest thanks jan. i like the boost vanilla. im going to add my konsyl fiber to it. should be a good combination... [ more ]
Guest thanks jan. i like the boost vanilla. im going to add my konsyl fiber to it. should be a good combination... [ more ]
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J-Pouch ForumsGeneral Discussion
hernia
JenniferGJenniferG
JenniferG surgeon asked me to wait longer because he is convinced my pain will go away. this is crazy! [ more ]
JenniferG thanks, I called this morning and left a message for my surgeon asking if he would order a CT before I saw him a third time. [ more ]
skn69 Anyone you can go to for a C scan??? Do you have a sympathetic family doctor who can help you out? Even a good GYN can order one....if the pain is that severe and you are more than a couple weeks out (and it isn't gas by now)...Then yes, someone should take notice and do something. Now is the time to call in your markers... Sharon ps...let us know what happens, please. [ more ]
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J-Pouch ForumsHelp! Need advice now!
So confused
D Debb714
Ant1982 I had the same problem. Your doc is right - where you can, avoid barrier creams as these make it worse. The trick to solve this in my case was to use salt water when cleaning the area down there and to take a probiotic daily such as acidophilous (sorry probably not spelt correctly). Don't wear undies at night - let the air get to it and like the earlier post suggests dry down there with a hair dryer everytime you wash. If can avoid washing too frequently all the better. I also used Canesten... [ more ]
Guest use hair dryer to dry off after bm, wear cotton undies, if possible sleep on belly buns up in the fresh air. anything to keep dry. even powder your bottom. [ more ]
Guest use hair dryer to dry off after bm, wear cotton undies, if possible sleep on belly buns up in the fresh air. anything to keep dry. even powder your bottom. [ more ]
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J-Pouch ForumsPouchitis
understanding pouchitis
AJ Auntie JoJo
selene New to this site!!Ok this is my third year with this pouch and it is my second bout of pouchitis. Last year I was given antibiotics and it cleared up great. This year they wanted to give me a medication that was a suppository that cost $650. I could not afford that so than they gave me asacol samples. I had an allergic reaction to this medication when I had UC. So the solution was to give it to me in enemas 3x daily. I don't think it helped my colitis. I actually think it made it worse. I do... [ more ]
Valentine Thank you CTBarrister! You gave me back some hope. I am just tired. I think I have used up all my patience. The lack of sleep with continuous cramping and messing up my pants has worn on me. I do have a small stricture which could not be dialated in the office without me crying. So, hopefully with the antibiotics (fingers crossed, I am not allergic to these) and the stricture taken care of, this to shall pass. I normally have the patience of Job. I have handled my near death experience with... [ more ]
CTBarrister I have had chronic pouchitis for 17 years and I am not scared of me, and you should not be scared of me. It's been treatable with rotating antibiotics. I learned that staying on one antibiotic for too long leads to problems. Fortunately, I seem to tolerate all antibiotics used to treat pouchitis very well, which is fortunate, because other treatments really do not work for me. Jan gave a good explanation of what causes pouchitis. It is not really a recurrence of the IBD that led to your... [ more ]
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J-Pouch ForumsGeneral Discussion
1 month out and still going to bathroom 20 times
S SandrineV
ISeeUC Yep, it's normal. Your dr might start you on immodium or lomotil to slow your output a bit. Measure progress in weeks, not days. [ more ]
Onwisconsin This is normal. when it can be helped, such as at home and sitting down. Try to hold the stool in longer than you usually do to try to help stretch the pouch. I'm three months out and I only go 4-6 times a day now, very little butt burn, and feeling very good. I was in the same position as you one month out. (maybe a little bit better at 12 times a day) [ more ]
Cataja Yep...totally normal...activity always increases later in the day...they don't know why this is. Figure one year for total recovery...but it seems I made a huge jump in recovery at the 6 week mark...best of luck. :-) [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch problems/Mesh/Hernias
Jamie_M_WJamie_M_W
Jan Dollar Sure, adhesions could easily be contributing and probably were a source of pain to begin with. But, say you are a severe adhesion former, it is quite possible that the mesh was like throwing gasoline on a fire and stimulated even more severe adhesions. That is why I would really think twice about the mesh hernia repair unless the hernia was a big deal, not just a big hernia. My incisional hernia was the size of a grapefruit, and my surgeon said it was completely elective to repair. Jan [ more ]
Jamie_M_W Ok. Yeah she told me that it was a large hernia underneith my belly button on my surgical line. And said she would use a mesh patch to repair it. My pelvic pain has been going on for quite sometime now along with the rubbing I am feeling. It used to come and go but it's been more constant and has gotten worse. She has known about this for awhile because I have mentioned it to her when I first started feeling it. When I had my hysterectamy I was told I had alot of scar tissue/adhesions in my... [ more ]
Jan Dollar I can understand your frustration, but try not to get yourself worked up too much about these communications with your surgeon. Obviously, your surgeon cannot feel what you feel, and she probably wants this to not be about the surgery she did, but about your inability to cope or over reacting. I can understand her desire to have a nice clean record too, but, you just cannot pooh-pooh serious, chronic pain. I am glad she asked about the second opinion, as that means she is being open minded... [ more ]
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J-Pouch ForumsGeneral Discussion
best alternative to metamucil?
G Guest
CTBarrister The people in my CCFA support group swear by rice crispies treats as a good thickening agent, although they have a lot of sugar. Naturally processed peanut butter and bananas also could help. As far as Fiber Supplements, Metamucil wafers should be tried in lieu of powder, they work well as a thickening agent. Inulin based fiber supplements may also work, but some people complain it gives them virulent gas. Basically you must engage in trial and error and see what works best for you. For me... [ more ]
Spooky I didn't have much luck with metamucil - gave me too much gas. I did try benefiber and while it didn't give me any negative side effects, I never noticed any difference in output or stool consistency one way or another, so I after a while I didn't bother with it. I still prefer foods for thickening. These days I really like applesauce as a thickener. I wish I had discovered it sooner. Rice and oatmeal also work great for me, and I've also noticed that when I eat the rice crisps/chips from... [ more ]
kathy smith Benefiber doesn't work as well for me but it works well for many people. You can also try Citrucel. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
mild hemorrhoid just turned vicious
G Guest
NewShinyCD I'm actually glad this topic came up because I think I'm starting to deal with one. What is the difference in pain levels when comparing an abscess to a hemorrhoid? The pain that I have is in the same area each time (seems like it is just inside where the anal muscle is), but it only hurts when I have to go to the restroom. And usually right before and a little bit afterward, but after a couple of minutes the pain completely goes away. I've been taking more metamucil and I've upped my dose... [ more ]
Guest well i guess if i dealt with it during uc and 30 trips to the can i can deal with it with a pouch n 6 trips. going to my surgeons today and first i want it properly diagnosed then she will drain it if necessary. she said its like instant relief instead of the days or weeks it took before to chill. does cutting it cause long term damage or scaring? ill wait the week for it to go down on its own if thats the case. i can say its been a frustration since my takedown because that side of my butt... [ more ]
Guest well i guess if i dealt with it during uc and 30 trips to the can i can deal with it with a pouch n 6 trips. going to my surgeons today and first i want it properly diagnosed then she will drain it if necessary. she said its like instant relief instead of the days or weeks it took before to chill. does cutting it cause long term damage or scaring? ill wait the week for it to go down on its own if thats the case. i can say its been a frustration since my takedown because that side of my butt... [ more ]
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J-Pouch ForumsGeneral Discussion
lactose in our meds???
G Guest
Guest good point. i will try it... [ more ]
Jan Dollar Yeah, but there is no casein in the lactose that they use as a filler in the meds... That was why I was thinking the lactase would work with the meds if you thought the lactose was a problem. Jan [ more ]
Guest hi jan, ive used lactase to no avail so maybe a casein allergy is the problem... [ more ]
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J-Pouch ForumsHelp! Need advice now!
blood through anus before take down
C cksind
kathy smith It's probably not completely possible to prevent either but it is possible that you'll never have either. One thing that has been discovered is that taking NSAIDs can lead to pouchitis, so try to avoid them. Also, ingesting pro-biotics can help. I've never had either pouchitis or cuffitis. Some people have a bout or two of pouchitis which is cleared up with antibiotics and then all is good. I eat sourdough toast every morning which has very mild pro-biotic qualities. But living in constant... [ more ]
cksind Thank you bootstrap My surgeon says he has left 2.5 cm rectal cuff. In his view it is impossible to do with less than 2 cm. He has no idea about blood in stools before takedown. But he says "no problem." (perhaps because it is not 'too much'). Kindly note that my system was not cleaned (flushed) before surgery, though the doctors had the time to do this because my surgery was elective. Is it possible that the present complication is the product of poor preparation? Is it possible to prevent... [ more ]
bootstrap According to my surgeon (one of the top colorectal surgeons in the country at a well-known teaching hospital), mucosectomies are not really ever done any more. They were more common back in the early j-pouch days when more of the cuff was left in tact, but now, especially since the introduction of the double-stapling technique that has cut way down on complications and issues, they try to leave as little cuff as possible to prevent cuffitis (in my case less than 1cm) - just barely enough to... [ more ]
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J-Pouch ForumsGeneral Discussion
what's the first step when you suspect IBD?
hart155hart155
hart155 Thank you for your replies. I am out of town for two weeks and was trying to get him an appointment with a pediatric GI, but I have to wait until he can see his pediatrician and get the issues on his record before they will accept him at a specialist. I just have trust issues with doctors and so I'm trying not to let my fears play a roll in getting this figured out. It has always bothered me that I can't find a nutritionally intelligent GI and so I was trying to get him in a healthy state... [ more ]
Spooky I am sorry your son is going through this. However, I agree with others. Before changing his diet and attempting to "self treat or self manage," it would be prudent to get him to a GI for a proper diagnosis, so you know exactly what you are dealing with. From there, you and the GI can discuss options, and that may certainly include dietary modifications, but under the guidance of the doctor, so you know are making the correct modifications. Guessing in these situations can be dangerous. You... [ more ]
gleam Could be a gluten allergy. [ more ]
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J-Pouch ForumsGeneral Discussion
Crohn's and mouth sores
Rosie128Rosie128
clouseau I am an inderterminant UC-crohns and since being diagnosed with lymphoma 11 months ago ahve been getting many sores outside the mouth at the corners as well as sores around my face. [ more ]
Rosie128 My primary care doctor just gave me a prescription for "magic mouthwash" and it definiely numbs the mouth. Ahh relief for a little while anyways. I am going to see my g.i. doc tomorrow, so we will see what she has to say about it being crohn's related. [ more ]
ke353 I had a really bad one before my colon was removed. It hasn't come back since and there have been no indication that I actually have Crohn's (knock on wood, right?) Ora-jel or anything to numb the mouth helped a lot. [ more ]
See all 13 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Fibroids
L lhh65
Jan Dollar I haven't personally had to deal with them, but it makes sense that if you have enlarging abnormal growths, they could potentially put pressure on your pouch and cause problems, from pain to obstruction. I can't imagine it would be much different than symptoms related to rectal interference. http://www.mayoclinic.com/heal...78/DSECTION=symptoms Jan [ more ]
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J-Pouch ForumsGeneral Discussion
fistula
FM Former Member
hart155 It could be a fistula and you will need an exam under anesthesia eventually if your symptoms worsen. Fistulas can be caused from surgery or from crohn's complications. What caused the fistula will determine how it is fixed. First determine what is happening and then worry about how it will be fixed. Most fistulas cannot be fixed with antibiotics, some can be fixed with cutting setons if the tissue is healthy, but most require a repair surgery. [ more ]
Uc-Danielle You will have to have an EUA done. ( exam under anesthesia) I then had a mushroom drain put in bc it was infected still. 3 weeks later I had a cutting seton put in. That was last Tuesday. It is very painful but it is going to take care of the problem. They sent me home on flaygl and cipro and of course pain medication. Good luck bc I know how miserable it is! [ more ]
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Bill Johnson founded the J-Pouch Group in 1997.

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

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