Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsGeneral Discussion
Problems with hair?
M Megals
skn69 Nice trade off! It must be lovely...I have the menopause, stress and anesthesia (although lately I have all my surgeries done under local...less hard on my system but a bit tough on the nerves)...but it can also be caused by thyroid problems, anemia and anything else that shakes you system up... If any of you get persistant hair loss or no regrowth it is worth consulting a specialist. Sharon [ more ]
Lesandiego My hair fell out 4 months after surgery, but it could be blamed for any number of reasons. 1. Stress 2. Anesthesia 3. Antidepressant (Lexapro) 4. Menopause I threw out all of my medications (I was doing fine without them) and I wore a wig when I went out of the home for 3 months. I used to have auburn colored baby fine hair, but now it is black, thick and CURLY. [ more ]
skn69 Megals, Yup, your hair is a reminder of where you have been, not where you are...So it is kind of a souvenir of horrors past (and horrors present when looking in the mirror!) I had a 5yrs period where I kept having surgery after surgery with barely the time for convalecence in between...I couldn't eat a lot of the time and was undernourished most of the time... I looked like I had come out of 6 months of radiation the first time that I really took a look at myself...and I cried. A lot. I had... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
being followed for dyplasia??
D Durk_344
Jan Dollar Sure, and that is fine too. Sometimes that route is good, if only to give your mind time to wrap around the idea of colectomy. I lasted a good 23+ years with just the routine surveillance (when I was first diagnosed they hadn't even begun using fiberoptic scopes yet!). Then after 20 years my GI started nudging me toward colectomy. I was comfortable just watching it because no dysplasia had ever been encountered. But, I had pancolitis, and even being in remission most of the time, I knew the... [ more ]
Durk_344 Hi Jan Thanks for the reply. I am at the point where I do have to think about whether I am up for surveillance indefinately. The first year of this you kind of just go from colonoscopy to colonoscopy as "due dilligence" or "second opinion". Now I am at the point where if I go onto more colonoscopies I am actively choosing the surveillance route. [ more ]
Jan Dollar Just in case it makes a difference in regard to how you think about it, when it comes to UC and cancer, low grade dysplasia does not necessarily progress to high grade then carcinoma in a linear fashion. Unfortunately, in UC what can happen is you have low grade here then there, then nowhere. Cancer can arise out of the blue in an area that is not even close to where dysplasia was found before. Of course, high grade is most associated with spontaneous incidence of cancer. The reason they get... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Finally good news after 8 months!!!
G Ginabello
Ginabello I had my weekly doctors appt. today I have had random bleeding at least once a week.. I have stopped my heating pad and the last episode was a lot less bleeding..I guess the seton gets irritated because of its location and cuts my skin. My doctor said all looked good and clean and this minor set back will heal itself.. I feel good better than I have felt in months. On another note I have a 16 year old who is now going through some issues and is being tested for celiac disease. She has lower... [ more ]
Ginabello Yes Liz it's a small abscess hopefully it will heal this time around. [ more ]
Ginabello Well My happy moment was short lived..I just got back from emergency after gushing blood poured out of me.. A very scary moment with my poor daughters in the room..I wasn't sure if I was bleeding from my rectum.. Lucky me my surgeon was still at the hospital and saw me.. My rectum was fine and my seton surgery was fine blood work came back pristine( doctors word).He gave me IV fluids and gravol.. I'm home now feeling better and ill see him Tuesday..Rachel my seton is definitely on the side... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Calling All Experienced Jpouchers
P phonix2g
lablover My mom, didn't have a choice of a jpouch etc. She had a bag for about 50 years. It was either a bag or death. Alot had changed from her experience with my husband's. [ more ]
rachelraven It's been 22 years with the pouch, 33 years without a healthy bowel, so I, too, can't really remember, but I was 19 when I had my surgery, and determined to ignore the fact I was previously ill. I am glad there wasn't any Internet back then (like today), because I had no time to dwell on things, and I just moved forward. While I approve of this site, and what it contributes, etc., reading too much about things and worrying, dwelling on the what ifs, and not trusting your body, can make for a... [ more ]
lablover My husband has had his jpouch for 18 years. He focused on getting his life back (or course there were near blockages that ended up in the er..which of course, focused on that and he had a bout of pouchitis) However, during this time we were raising our son(still are). I think he has done a pretty good job of it. He is my idol the way he has reacted to what has happened to him. Especially the dark days of colitis when he was on steroids and the colitis would not recede. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Anyone go to Hopkins?
vanessavyvanessavy
lablover My husband went to George Washington University in D.C. [ more ]
tiesto81 Please let me know if you have any luck. I am looking at CC for potential jpouch surgery but would like someone local to deal with for any immediate concerns. I am meeting Dr. Jonathan Efron in early July. I found his info from a few posts on here and reviews on the web as well as being rated in the top 1% for colorectal surgeons. No idea what to expect but maybe worth getting in touch with him to see if he's a good fit? [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Severe bleeding with pouchitis and cuffitis
ClickyClicky
TE Marie Congratulations Clicky on your healthy baby boy!!! [ more ]
Clicky Hi Darcy, I used steroid suppositories while pregnant. My high risk OB said no problem after this issue. I was also on continual antibiotics and found augmentin worked best. All worked out just fine. I was ill and they had to take him at 37 weeks as he stopped growing and I was really struggling, but now he's a big bouncing baby ! Sounds like you need some more knowledgable doctors in this. [ more ]
jeane Darcy, I am sorry for your pain. Just wanted to let you know I took oral prednisone and oral sulfasalazine throughout both of my pregnancies with no problems when I had active Uc. you need to be seen by your Gi. I agree the diarrhea is not good for your body and the pain is something your gi should be able to prescribe to help you heal. [ more ]
See all 8 replies...
J-Pouch ForumsPouchitis
Probiotics
P pinky56
TE Marie I have been a loyal VSL#3 user since my take down, 2.5 years ago. In a recent visit to my GI, Dr. Loftus Jr. at the Mayo Clinic, we discussed it and he says they don't hurt but he doesn't recommend it. I said I'd read a study on it by the the doctors at the Cleveland Clinic and he said those studies were better than the ones written by the Italians. Evidently he doesn't think the Italian studies were conducted correctly or whatever. That said I am had several occurrences of pouchitis. So, it... [ more ]
Jan Dollar Capsules are fine. They are not plastic, but gelatin, and dissolve quickly. What matters is which probiotics that are inside and if they require refrigeration. You need to be sure they were stored properly if they are not shelf stable. Jan [ more ]
dgtracy what is your opinion on probiotics that come encased in the plastic or gel caplets...can we digest those? [ more ]
See all 10 replies...
J-Pouch ForumsPouchitis
Newbie and just diagnosed with Pouchitis
H HeatherPyle
Jan Dollar Just so you know, even if you are eating food that goes completely undigested, it should not cause bleeding. Increased frequency, urgency, and bleeding mean pouchitis and/or cuffitis and only medical treatment will take care of it. Diet will only help some of the symptoms. Glad you're feeling better. Jan [ more ]
TE Marie My recommendation is if you see a food coming straight through to stop eating it, unless it's everything! I can't eat fresh fruit and veggies so I make protein smoothies with them and all works well. Other that that I can eat well cooked veggies. I eat beef only once a week. I hope things start improving for you soon. [ more ]
HeatherPyle I feel 1000's times better with the Flagyl. Not fatigued or run down at all. I still have watery stools-nothing formed yet, but absolutely no undigested food in bowl. As for the diet, I pretty much eat the same thing everyday. I don't eat fruit at all. I had to adjust the veggies as I was eating broccoli a few times a day. I have since switched it up broccoli once and asparagus twice a day and it seems to be working well at this point. Thanks for the replies. I appreciate it. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Long time between surgeries
L Long3Step
Jan Dollar 15 years? I'd start doing kegel exercises...yesterday! Weakness of the rectal sphincters is likely to be your biggest challenge after so many years of minimal use. Other than that, your adaptation should be the same as anyone's and you don't need any special preparation that is different than any other major surgery. Good luck! Jan [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Post surgery energy
W wooly-bobs
dgtracy My energy was shot after surgery, im a little under 2 months post op and I'm starting to get it back though,just slow going. [ more ]
suebear I also got my energy back, but it took about a year. I had been fairly sick with UC for about 2.5 years until surgery so it took me longer to bounce back. Sue [ more ]
Scott F Heck, I got my energy back. Everyone's different, of course. FWIW, I had a one-step procedure, and have no regrets. The recovery was very unpleasant (10 days in the hospital), but then it was *over*. Many here are horrified by the risks of a one-step, and I suppose I'd be singing a different song if I'd had complications. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Wet Farts
Mema 1Mema 1
Scott F Every time I've tried to eliminate or reduce the Cipro I've become symptomatic. I think the probiotics are probably still useful, but not useful enough at this point to eliminate the need for antibiotic treatment. [ more ]
Mema 1 Thanks, Scott. I'm just really curious why you stay on Cipro if you use VSL. Aren't probiotics supposed to help so that there is no need for an antibiotic? [ more ]
Scott F I just stay on Cipro all the time now. I suspect the folks who've had C dif think I'm crazy. Probiotics differ in the number and selection of organisms per dose. One organism = 1 CFU (Colony Forming Unit). I'd suggest knowing how products compare when choosing a substitute. I've been happy with VSL #3 DS at the max dose (4 packets per day). That's a lot of bugs. [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
Functional problem with small intestine
_Jeffrey__Jeffrey_
rachelraven We use Reglan on ICU patients with peristalsis issues, but it has tardive dyskinesia as a side effect. Also, we use oral erythromycin, too. You could ask about those, don't know if they'd be appropriate for your situation or not. I've had sort of bloating and nausea for a time, myself, but I've attributed to stomach issues (2 weeks of Prevcid usually makes me feel better), and an ovarian cyst that's sort of big. But my BMs lately have slowed quite a bit, and I've had to rely on MOM at night... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Mayo Clinic and Cleveland Clinic
F Future_Jpouch_Patient
Dot2 As a mom I was very impressed with the Cleveland Clinic = their concern and courtesy was something very unique - daughter had J pouch with Dr Bender at Hopkins 19 years ago - she is seeing the head of the colo-rectal surgeons now as they have detected cancer in a small portion of the j-pouch exterior - Hopkins set up a program that thankfully involves local medical services [ more ]
Minn Mark I had Dr David Larson do my 2-step surgerys at Mayo and they went very well. He performs the surgeys himself; it's definitely not mass production medicine here. I can highly recommend. Cheers, Mark [ more ]
Scott F If a surgeon has a solid reputation for getting excellent results, one of the conclusions you can draw is that his/her supervision of fellows is appropriate and effective. Fellows come and go over the years, and a good attending surgeon knows exactly how to manage that. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Immodium, making the switch from Lomotil
dgtracydgtracy
dgtracy Bootstap, we dont have medical cannabis here in South Carolina..not to say i dont have any but i for sure dont have the hard candies lol. i have not tried smoking before bed, if i wake up and things are really loose then i tend to smoke a little and then go to bed, maybe i will try it more before bed than anything. [ more ]
bootstrap I did notice that my gas died down quite a bit after the first few months... it never goes away completely, though. Jan is right about time being your best medicine. Right at four and a half months, I suddenly started sleeping through the night. I was very excited about this until I got my first bout of pouchitis a couple weeks later that threw that whole idea out the window. Now whether I sleep at night mostly depends on what I ate that day. In attempts to get healthier, I've been eating a... [ more ]
suebear And just remember that all of this you are experiencing now may change in time. For me the first six months were difficult with gas, difficulty with some foods and frequency. There came a time when I turned the corner and all of these problems went away. Sue [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Beano
kblgalkblgal
dgtracy Just what Jan said, The pill form allows you to either swallow it or you can chew it then swallow it, (although not the best tasting) my local walmart had beano meltaways which were "strawberry flavored" and the box said one meltaway equals two pills..could be cost effective havent done the math. No matter what it looks like it works so much better if you take it before the first bite..if you take it after eating or in the middle of it doesnt seem like it works as good. [ more ]
Jan Dollar Perfectly safe. Jan [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Inflammation in small intestine????
N Nroley
Jan Dollar Could be Crohn's, but no point going there before all the evidence is in. Chronic gut inflammation could explain your anemia too, so that points to Crohn's. The good news is that Crohn's does not mean your pouch has to be removed. You'd need treatment for Crohn's whether you had a pouch or not. Take care, Jan [ more ]
Nroley I forgot to add I'm very anemic, my hemoglobin is between 7.5 and 8.5. [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Passing Gas
R Rocket
Nroley I have to lay on my left side, works every time. [ more ]
Lesandiego My best and most guaranteed position is laying down on my right side. [ more ]
ARP83 I lay down on my chest then put my forhead to the floor and put my butt high in the air you will fill it slowly push its way to the exit then you can jump the toilet and let it all out....sounds goofy but it works [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
At what point do I need to go to the hospital? :(
kblgalkblgal
Jan Dollar If you have a lot of diarrhea, take Immodium on a schedule throughout the day, not hap hazzard here and there, but keep the dose on the low side. It builds up over a few days. Right now, you need consistency. Jan [ more ]
kblgal Oof, don't treat the diarrhea? I have been taking Immodium for the urgency when I have it. Should I not be doing that for awhile? I've been going back and forth still between gas pains and urgency. My body can't seem to ever make up its mind! I'm really glad to know the gas pains will at least subside eventually. [ more ]
Jan Dollar Give it a few weeks and try not to get discouraged. After you've had an ileus, the gut is very "touchy," as it is inflamed and sensitive after the trauma of food going in, and not moving through. Keep the meals small and easy to digest. Take Beano WITH the meal, not before. No surprise Gas-X didn't work, since it does not prevent gas at all, just helps you get rid of it. But, if the gut is sluggish, no help there. So, until you are over this gas trouble, don't try to treat diarrhea much. Be... [ more ]
See all 21 replies...
J-Pouch ForumsHelp! Need advice now!
UC w/low grade dysplasia - J Pouch surgery
E eagle999
Maggie87 My situation was similar. I've had uncontrolled UC for 11 years. My last colonoscopy in February showed extensive colitis and regions of low grade dysplasia. My doctor insisted that I meet with a surgeon. I had the first part of the two-part surgery (ileal pouch-anal anastamosis) in May, and they actually found a small cancer in the pathology (contained, thankfully). I don't know how common this is, if at all, but had previously read some journal papers about it. I had a laparoscopic... [ more ]
mehoffma Your situation is almost exactly like what I went through. However I was diagnosed with high grade dysplasia. I went to the Cleveland Clinic for my first procedure. Went septic because the surgeon did not put drains in me after surgery. Keep in mind, Cleveland Clinic is a training clinic. The Dr. you think is doing the procedure just maybe facilitating it. I would never recommend the Cleveland Clinic based on my experience. I would suggest finding the best surgeon close to where you live. [ more ]
Av8erchic Your situations sounds VERY similar to mine. I had UC under control, officially diagnosed in 2011. My initial colonoscopy to diagnosed UC showed high grade dysplasia. After rounds of cipro and flagyl, it went to low grade, then none. I was taken off the meds and two colonoscopies later (all within the year), had high grade dysplasia again. I had my entire colon and rectum removed with J pouch creation on November 2, 2012 and had takedown exactly 6 weeks later, December 28, 2012. I returned... [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
J Pouch Surgery for Crohn's Colitis
M mbetter27
beckysmom Hi. My daughter's surgeon in NY says that many surgeons will not do the surgery on crohns patients, but he will considering each patient individually. It sounds like if you can go to CC, then it is your choice, at least you have an option, although sometimes that makes the decision more difficult. Hopefully someone with that experience will answer you. I hope for the best for you whatever you decide. [ more ]
Pluot There is a paper that was put out by CC recently that followed up with I believe 3000 j-pouch patients who had it for UC, Crohn's colitis, FAP, and cancer. You can see that although the risks of complications are a bit higher for Crohn's colitis and the long term satisfaction rates are a bit lower, if you meet CC's criteria for a j-pouch for a Crohn's patient and you're OK with the %s quoted, then you should go ahead. Found it: http://www.ncbi.nlm.nih.gov/pubmed/23299522 [ more ]
Jan Dollar There is a higher risk of pouch failure with a Crohn's diagnosis, even if it is confined to the colon. That said, if you are willing to assume that risk, then the j-pouch can be a good option. The problem is that there is no way of knowing if the Crohn's will return to the small bowel after the colon is removed. If you have rectal sparing, it is also possible to have an ileorectal anastomosis. The Cleveland Clinic chooses their candidates for j-pouch very carefully, so it is not as though... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
xifaxan
L liz11
liz11 yes think positive. two different docs (including dr. shen) wrote me a script for plaquenil last year, funny how I just remembered that. Its the least harmful drug supposedly for lupus. Of course I never took it, because I didn't officially have lupus! And I seem to always get the rare drug side effects and I didn't want to add anything else into my system that would interfere with any potential butt wound healing! [ more ]
Jan Dollar I have a friend with SLE that has maintained remission for the most part with Plaquenil (an antimalarial). She has only needed short courses of prednisone for flares, and has not needed the likes of methotrexate for maintenance. But, Plaquenil is not without potential side effects (what is?). Jan [ more ]
liz11 love it. possibly been living in ignorant bliss with lupus!!! yes sulfasalizine isn't a treatment for lupus.. that's for measly old NAID. lupus drugs are far more potent. and you are so correct coming to a diagnosis is not linear. But now thinking about it, I have had several doctors the last year suspecting lupus. In fact, I even had major lupus testing about 7 years ago when some freak things were going on. guess I should reschedule the 6 month lung doctor appointment I cancelled right... [ more ]
See all 17 replies...
J-Pouch ForumsPouchitis
Noises and Rumbling
LeftieLeftie
TinCan My insurance does cover VSL#3. I pay $40 for six boxes of packets - a very reasonable price especially compared to the uninsured cost (that information can be found online - don't recall off the top of my head). As I mentioned previously I find that it helps with my digestion/rumbling noises, so I take it immediately after a meal. I ostensibly use it for pouchitis, but find that avoiding sugar and processed foods has had a greater impact on that front. So diet is certainly worth your... [ more ]
vanessavy Sounds like SIBO. I have it. I am on the verge of buying a stoma reducer even though I don't have an ostomy but to cover my opening for my bcir. It is violent as well for me. SIBO is managed by diet. Sugar and bread/startches. There are a lot of cook books out there for the SCD and Paleo that work for treating it. I avoid fruit since that is sugar and honey or agave, dairy. For SIBO a high (heathy) fat diet is a must since the bacteria can't grow there and you can absorb nutrients properly... [ more ]
liz11 sounds SIBOish to me. and if thats the case, probiotics (VSL) can make it worse. if its sibo you may have to alter your eating, diet in addition to antibiotics [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Carrageenan and inflammation
T tulsamom
tulsamom I am going to have to give up my favorite soy milk and soy-based ice cream. Lord knows I don't need to do anything to cause inflammation. Has anyone ever cut it out of there diet and had a noticeable response? [ more ]
Jan Dollar Gee, it would seem that all you have to do is avoid processed foods, or at least keep tham at a minimum. Means more work for you, but maybe worth the effort. That way, you also avoid many other additives and preservatives with questionable value. Jan [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
C.Diff and Acid Reflux remedies
vanessavyvanessavy
vanessavy Apple Cider Vinegar has been used forever for GERD and reflux. Google will pull up various articles and reasoning to it. I mix a shot in a glass of water. I have been using Aloe Vera as well. [ more ]
Quinese Aloe vera juice helped me several times, but it has to be natural juice (I make it from the leaves at home) Water with baking soda is also effective. Apple cider vinegar doesn't work for me, and I can't understand how it can help of acid reflux is a result of too acid already and you add even more acid. [ more ]
vanessavy Thanks! I will pick up some aloe vera. I have used that before since it helps with bladder flares. I usually put cucumber in water and shall do that again. Very refrehing [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
cramping and discomfort
T tmar
Jan Dollar With a partial obstruction, there is no imaging evidence. Those here who have experienced it (I'm one, several times over), you have the feeling of being obstructed, but things are moving through, just not very efficiently. And yes, it can be part of your gut settling down and adapting. Usually they become infrequent or go away all together. It sounds like you are doing what you need to. If things ramp up, just dial back the diet to liquids only. Jan [ more ]
tmar When I was in the hospital overnight last week I was NPO for 18hours. They did not see and type of obstruction in the xrays and the doctor felt that there was no obstruction because I am having bowel movements and gas. I think what he meant by "growing pains" was the way the body gets used to the pouch. I am on a strict GI Soft diet and I have not strayed from it since the surgery. I appreciate the advice nice to hear from someone who has gone through this as well. [ more ]
Jan Dollar Sounds like you are experiencing a partial bowel obstruction. Not sure how this is "growing pains." Maybe your doctor was just rying to be funny. Midol is ibuprofen, so if you tolerate Motrin and similar drugs, it would be OK, but just be careful, as it could make inflammmation in the gut worse. Just because Midol is marketed for menstrual cramps, it does not mean it is good for a crampy gut. It might help, because ibuprofen blocks prostaglandins, which promote contractions. Just be wary, as... [ more ]
See all 3 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Partial Obstruction
Gina BGina B
JillM I had this happen at about 17 weeks with my first pregnancy. It is usually when the uterus starts to expand and pushes an adhesion that blocks the intestine. If your pain is manageable and you are able to keep down liquids, you probably don't need the ER right away, but I wouldn't wait too long if this continues. As for what they can do, not much except monitor it, give you some pain meds if you want them, check to be sure the baby is ok. My obstruction lasted about 6 weeks - required 2... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Ahdesions
L LisaT
Mhg26 Hi Lisa, I've also experienced some issues with scar tissue. Currently, I am a little over 1 year out from my takedown surgery and overall doing pretty well. I went back to college and did better than I ever have. I met an amazing girl who has changed my world. Most of all I appreciate life again. Anyway, since my surgeries I've experienced several small bowel obstructions that have placed me back in the hospital. Luckily each time it happens it seems to pass on its own. I usually try to... [ more ]
vanessavy Find a Rolfer that specializes in Visceral Manipulation. Rolfing can be done in about 5 sessions and breaks up the adhesions. I go to a very experienced women in Maryland. [ more ]
liz11 My docs tell me "deal with it". As surgery for adhesions causes more adhesions. Personally I have found that the more I exercise and move..especially things like yoga and pilates helps more. Also hot baths, massages, etc. Also if you are having pain after you eat, due to adhesions, try eating smaller meals and eat more frequently, say five or six times a day. What have you done to try to help with your adhesion pain? [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Prednisone
L LisaT
dgtracy what was the alternative to pred? was it prednislone? [ more ]
phonix2g Well confirmed today I have cataracts in both my eyes. Not bad enough for surgery right now but definitely from the prednisone. It is very effective but very evil. Try and get off and stay off of it. I also developed severe acne on my back when I was on it. [ more ]
liz11 Why are you still on it? Seems you should have been tapered off long ago by now. I don't understand. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
New J-Pouch
J j_stone
Holly M I have to agree, take one day at at time. Everyone's recovery can be different. This site will help alot early on for sure. [ more ]
rachelraven Advice... Take one day at a time. Sometimes it takes folks a good year to really see the true difference in how they'll feel. Have patience, is my advice. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
chronic diahrea no matter what I do??? suggestions
B burntislandrebel
vanessavy Also, check your meds you are on. I take an antibiotic called Tindamax and it makes my transit time fly though and pure liquid comes out of me. [ more ]
vanessavy If you can send me it I would like to read it as well. Thanks [ more ]
vanessavy Dumping is very common if you have gastric bypass surgery but not the one I have. I had a vertical sleeve and sometimes now that my colon is gone I get dumping, out of nowhere, years later. I am not sure Shen is the right one for this issue so I am going to a Bariatric center since this is their specialty and those GIs know about dumping and transit. Shen I think is more focused on pouch issues or UC/Chron's and def lower than upper IMO. [ more ]
See all 19 replies...
J-Pouch ForumsHelp! Need advice now!
New meds -have questions...Jan?
A akteacher
liz11 dr. shen seems to always writes scripts for tons of refills. Seems he doesn't want to waste his time with us all bothering him for refill prescriptions! You might want to do the tinamax and suppositories for two weeks, then keep on with the suppositories for a bit. Then you will know more certainly which one is helping you. But definitely just email them both with questions. They are extremely responsive via email. hoping the new drugs get you back into a better state! [ more ]
Jan Dollar Hey, it is super easy to get everything all jumbled up when you are coming out of a fog. They could have told you there were pink gorillas running around the room and you probably would forget they said it. That is why you need a sober person with you when they tell you things, or have everything written down for you! Jan [ more ]
akteacher I looked back over the notes from Geeta & it says in her notes to take for 14 days. Dr. Shen just wrote to see Geeta after the pouchoscopy, which I did. It seems I recall Dr. Shen saying he was writing a script for the suppositories due to the irritation & he was giving me 12 refills. I don't recall him or Geeta saying anything about how long to use them & nothing was noted. I have taken 3 pills & used 1 suppository & am already feeling a difference so I think I'll finish... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Chron's disease confused for UC or vice versa
JS Joe S.
liz11 Docs at CC state that even though you may have had UC before surgery, that new autoimmune diseases, like crohns can develop after. So it does not mean your pre-surgery diagnoses was wrong. Its that surgery triggered another autoimmune disease. [ more ]
Jan Dollar Removing the colon may or may not prove anything, since chronic pouchitis may or may not be UC or Crohn's. I think what they are finding is that IBD is not just two diseases, UC and Crohn's, and there are a number of subtypes. Of course, it is a moot point if the treatment is the same... The initial diagnoses may not have been wrong, but just based on limited information. It can take a lifetime for IBD to fully develop. No one has implied that I have Crohn's because I developed enteropathic... [ more ]
Semi Colon I had UC for 27 years before my j-pouch. Several years of pouchitis, then cleared up spontaneously. But still had ulcers in the pouch. GI started me on Remicade and improvement was dramatic. She says the best way to decide whether it is chrohns or UC is to remove the colon . So I'm not sure what all this means, but it is interesting how many former UC sufferers have been diagnosed with chrohns after years with a j-pouch. I cannot believe all those initial diagnoses were wrong. [ more ]
See all 7 replies...
J-Pouch ForumsOstomy & Skin
Working full time
EricEric
JillM I went back full time 4 weeks after perm ileo surgery. AND I worked full time while pregnant with my ileo. 13 years later, I have two kids, am co-chair of the school PTA, serve on the school site council, just started a full-time, at home travel business, manage karate, swimming, gymnastics and soccer practices and games for my kids - I'm more than full-time work busy with no problem. I think it is all how you feel. If you feel up to working full time, do it. [ more ]
itsnotsherry Hi Eric, I went back to work one month after surgery. I can't imagine not working full time. I feel better than I have in 20 years! [ more ]
Lesandiego When I had my ileostomy, I did not work because I had 2 more surgeries within the next 8 months to create the J-pouch. I had no job to return to (medically separated) and it was more of a social issue rather than a weakness. I am now working part-time, 5 hours a day with the J-pouch [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Preparation for night of drinking
JS Joe S.
bootstrap I used to pop a couple Imodium with my first drink, but then I realized I didn't really need to. Plus, the Imodium gave me the tolerance of a frickin' bull (six rum drinks at 140 lbs and only a light buzz). Fortunately, alcohol doesn't seem to have a negative affect on my j-pouch. I can drink whatever I want and am just fine. Just watch out for dehydration. [ more ]
lovedby2 I'm seven months post op and have tried to have a few drinks a couple of times. I use to be able to handle a night of drinking, not anymore! What I found works for me is cranberry and vodka. One or two and I'm pretty buzzed. I DO dri k water whole out having these drinks... No food! Any other drinks and I'm in bed with a severe headache and water faucet diahrea and dehydrated. Gatorade when I go to bed. [ more ]
Cdub I'll drink water and have a couple of bananas before I head out, and take a pre-emptive Immodium, and probably again when I get in (depending on how drunk I am and can remember!). [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Bathroom Yoga
P phonix2g
phonix2g I'm glad this post is still getting input. Its good times. I agree squatting is supposibly the best position and in other countries they still use this technique. Unless you plan on standing on your toilet seat (which seems kind of dangerous and could end up messy) than most of us won't experience the pleasure of such a position. If any of you are crazy enough to experiment please let me know how it works out and I would like to hear it in detail ha ha. [ more ]
bootstrap UC Warrior - Yes, you'd better get used to explosive bowel movements from now on, as this is very normal. The air gets trapped behind the stool, so when you let it out, the air pushes out the stool and causes noise and splatter all over the back of the toilet bowl. (I now have to clean my toilet WAY more often than I ever used to.) Yeah, knees up is always best for anyone trying to empty their bowels. They actually make little U-shaped stools for this that go around toilets. Knees up a bit... [ more ]
Cdub My stoma nurse told me that because of the angle of the j-pouch inside it's easier to empty if your feet are raised. For a few months after the op, I used a little footstool (12cm high) which really helped. That, and gently rubbing my tummy in a clockwise circular motion. [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
jpouch 3 years later..
OZOZ
phonix2g If you could tell us how your diet is maybe we can make some good suggestions. Diet is one of the biggest factors that would contribute to your transit time or feeling of urgency. Immodium works for a lot of people some prefer the pills others the liquid. Immodium didn't work for me so I had my surgeon prescribe me Lomotil its a lot stronger but still doesn't work for everyone. I agree with VSL#3, I have been using it for about 3 weeks now and it seems like things move smoothly. Before I... [ more ]
nocolon-2000 What are you eating? Fiber? You might have to cut back on fiber. I find that I can eat a salad maybe once a week. Same with fruit. Are you drinking enough? I drink too much Diet Coke but throw in other fluids as well. Probiotic? Mine saves me a lot of trouble - leakage, etc. There are many to choose from. Top of the line would be VSL # 3. It's expensive but works for many people. I take Culturelle now and have take Flora-Q in the past. Total pouch-saver for me. If you feel like you have to... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Swimming with healing stoma site
dgtracydgtracy
vanessavy I got MRSA and Cellulitus from swimming in my apartment complex's pool 3 months post op from surgery once. I had a tiny pin hole that was still open. just make sure you are healed. T hat was one of the worse experiences I went through for a month of trying to get rid of it. [ more ]
skn69 DG, Fleshy pink meaning scar tissue or fleshy pink opening? If it is scarred over and the area is pink but 100% closed then there is no problem but if there is still an opening on the skin then no, it isn't a good idea. Sharon [ more ]
gleam Yeah, not sure I would either. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
J-pouch for IBS
S sming
vanessavy I was misdiagnosed with IBS when i had FAP. Just make sure you have had lower scopes done before doing something drastic like a jpouch. IBS can be maintained with diet as well. [ more ]
sming Hi Jan, it would indeed be terrible to end up with IPS as a result of trying to solve IBS. However, I am willing to take that chance because there's almost no possibility that my IBS is going away otherwise. I haven't seen any surgeons. I thought I'd ask here first to see if anyone's heard of it being done. I get the feeling that the vast majority of surgeons would give a firm "no" :/ Thanks for the reply, Pete [ more ]
Jan Dollar No, I haven't, and I am not sure it would solve things, since IPS (irritable pouch syndrome) is a common disease of the pouch. But maybe others have heard of it. I have heard of j-pouch surgery for chronic colonic inertia,which could be rather similar. Have you seen any surgeons? Jan [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
New J Pouch Help!
BreannBreann
spouch Hi Breann. John from Australia. As you are only a week after having your Ileostomy closed it may take a while for things to settle down, so don,t lose heart. Try and keep afood diary of everything you eat at this stage and I mean everything so you can work out what goes through so to speak. I am a bit carefull with what I eat even after having a pouch for over 30+ years but I find it is a very small price to pay for not having U/C like I did. Just make sure you drink plenty of water so you... [ more ]
gleam It doesn't make sense to me either, but your body does adjust to the new plumbing. It takes a long time. I am 9 months since takedown and while I still have bad days, they are nothing like before! I had less butt burn the thicker my output. Imodium works good for daily use and when I have really watery BMs Pepto Bismol works great. I do not eat anything green especially lettuce. HUGE gas maker, also try to stay away from carbonated drinks (my bane). I have found that if I don't eat in the... [ more ]
playin hooky Brean, I am almost four weeks post op and had your same issues until a few days ago. They started getting better after week three. The mornings are better and the afternoons gradually continue to get better. My problem is still at night, gas and leakage. Happy to compare notes [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
jpouch
L ljk
ljk marrianne and jpouch team I am home went in on Monday and out thurday. I am having a little pain but nothing that I can not handle myself. Now what?? The very last step I know !!!!!!!!!!!!!!!!!! I want to go back a little though. When I woke up and became alert, I wanted to look for the new stoma. I looked, and looked and nothing. I was thinking that maybbe things could not be done. Well then she explained every thing was done through my original stoma. Boy, I was pleased. [ more ]
ljk Goodmorning and thanks for responding! Well I went in on monday and now home. I am still a little sore though, but making it. Now the next question is the last step. How long is this process? How long in the hospital? What about working? How soon? Well Like I said so far so good and hope this continues!!!!! [ more ]
Scott F Leslie- Just to clarify, I have the sense that you may have indeed thought this through, and don't really have a reason to delay or cancel it. I was suggesting therapy on a more relaxed schedule, not urgently prior to the surgery. You've been forced to take a gamble, and it sounds like you may be very uncomfortable with gambling (i.e. taking risks of this magnitude). You might be able to use therapy to find a more comfortable way to let go of control/certainty when control just isn't an... [ more ]
See all 26 replies...
J-Pouch ForumsGeneral Discussion
Worms?
Kline84Kline84
Jan Dollar They are till actively studying this and the hope is that it will be another viable treatment. I wonder if the human genome research will help determine which patients will respond well to this treatment? I love it when they think out of the box! This article talks about all the research so far: http://www.sciencedirect.com/s...ii/S0020751912002962 Jan [ more ]
Kline84 I thought it was pretty interesting. The article I read stated that the whip worms were ingested in a glass of water as eggs. They are so small it looks like a normal glass of water. It stated that this had to be done every three months as this was the lifespan of the worms and since they can't reproduce in the human body then the "worm colony" could not repopulate itself. It stated that benefits were causes by the worms activating cells that regulate the immune system. The article also... [ more ]
killcolitis I have some in my closet as we speak. I've inoculated my husband with him (he has psoriasis and the provider we are using allows parents to be inoculated along with kids so they have an idea of what their kids may be feeling). I do want to try this with my daughter but haven't yet. Will likely soon. There are two types of worms, the ones for UC are different from the ones for CD/allergies and other AI issues, which in itself is interesting. ANd no they don't work for everyone but do work... [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
phantom pains
Rosie128Rosie128
vanessavy I hate that crap. I regret removing my rectum and anus all the time. I actually one day hope with stem cells I can recreate some parts. I really have no desire to keep this pouch and don't want a bag so will be awesome to have it all reconstructed down there. I have night terrors I swear where I am trying to fart. I can feel my body trying to pass gas at night. I hate this barbie butt big time, especially with gas. I get the 'oh crap, I have to run to the bathroom and poop now' feeling a lot... [ more ]
skn69 Rosie, I get them more after certain activities like bike riding, running or other exercises that put some sort of pressure on the zone...sex or my period (when I still had one) made it much worse but it wears off a bit as time goes by...or maybe I just got used to it...It feels more like a heaviness down there or a knife pain... I still dream of having normal bowel movements and then wake up with some cramping or pain down there... mostly after 33+yrs I ignore it but if it gets bad enough... [ more ]
bcirray I've been an ostomate for 41 years (30 ileo, 11 BCIR), still get phantom "pains", same illusion that amputees have. Nothing I know of can be done. Ray [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Anyone have prolapse prior to surgery?
T tiesto81
skn69 When they created my k pouch, they disconnected the colon but didn't remove it...by the 2nd month it was prolapsed right out the bottom...had to keep pushing it back up (TMI?) it cramped and was squirting a awful, stinky mucous constantly...3 months later at step 2 they yanked it out, closed me up and other than some phantom pains and pressure life was grand. No problem for the surgery but I am a k poucher and not a j poucher. Sharon [ more ]
mgmt10 I had some prolapse and God awful hemorrhoids before surgery from being on the toilet 30 plus times a day. Everything cleared up after surgery and I have not had an issue with that since. [ more ]
tiesto81 Great, I am happy to hear this. On a related note, is anything done with regards to hemmoroids with the surgery? I didn't know with all the work done down there so to speak if they end up even touching hemmoroids or if it just clears up afterwards. I definitely have some. But I believe that it is all due to the straining and frequency over the years. I imagine post surgery it would be less of an issue since that part of your body is not getting exhausted as much with as with colitis. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
illestomy/j pouch output comparison
S Salmak
kathy smith Even if things are watery with the end ileo, a functioning j-pouch will probably be much different. I had rather watery output with the end ileo. I had REALLY watery output with the loop. And most of the time I have fairly formed stools now. Sometimes it's even like the old colon days. kathy [ more ]
spouch Hi Salmat. John from just north of Sydney,central coast actually. I had a loop ileostomy and the output varied with what I ate. With my s pouch it still depends on what I eat but after haveing a pouch for over 31 years I have got it pretty well sorted out. If you contact the Stoma nurse in the hospital where you had your surgery done he/she may be able to arrange for someone that has had a pouch for a while to have a chat with you and give you some tips. I have seen a few people who have... [ more ]
Salmak Thanks for the responses. I probably should have mentioned at the start that I have an end ileo at the moment as I'm having a 3-step. Things are still fairly watery at times, however we'll see how things stabalise over time. [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
ugh..tests results..need help please
speech pathspeech path
speech path THANK YOU Jan!! That worked! I appreciate it! So, have you ever heard of anyone having an atrophied pancreas? Doc said it's either because of all the steroids or possibly another autoimmune disease. Still waiting on the biopsies and blood test results. [ more ]
speech path ugh...still not working It must be my computer. Thank you so much for helping me though! [ more ]
Jan Dollar I think this link might be the one. http://onlinelibrary.wiley.com....1002/ibd.20661/full That thread was over a year ago. I hate it when they move articles! Jan Update: Sorry about that! Seems like they don't like me putting up a link to the PDF. So, I tried the main link. Hopefully that works!! [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
New Bleeding, Please Help!
H Hannah_ward_24
Hannah_ward_24 Thank you! Well,I saw blood again today so i called the nurse and she went and asked and said i was good because everything looked good when i came in on the 12th. But having blood still isnt fun! Wish she couldve explained what was going on with me :/ [ more ]
Jan Dollar Yes, easy for your imagination to run amok. Calling the doctor is good fr two reasons. One, you can get information to put your mind at ease. Second, the doctor assumes that you are doing great unless he hears otherwise, so it is good to keep him in the loop. I'm sure it is pretty common for doctors to hear, "I've been having this symptom for a month, but I didn't want to bother you..." Jan [ more ]
Hannah_ward_24 Thank you for the reply! Its a little blood in the stool, hopefully nothing serious. I am going to call the nurse tomorrow and just let her know so i can get some answers, i hate not knowing if its a serious issue or not. [ more ]
See all 4 replies...

Join Us!

Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

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

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

Join Now

Already a member? Sign In

Online Now

Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×