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J-Pouch ForumsGeneral Discussion
Antibiotic allergy
Kline84Kline84
Kline84 I had never had a problem with them before in the UC days but it's definitely one of the two. I just don't know which one because I stopped taking them both and the rashes disappeared. My question is since they normally treat pouchitis with capro and flagyl what would they do if I ever got pouchitis an told them I was allergic to those meds? How would they treat it? I am assuming since I am allergic to levoquin I would be allergic to cipro since its the same type of antibiotic. [ more ]
Former Member Sounds like an allergic reaction. I'm allergic to IV Leviquin. No problems taking it orally, at my first UC admit, they gave it to me IV, within 20 mins I had large, itchy, red, striations going from my IV site (back of hand) to my elbow. [ more ]
mgmt10 Sounds like an allergic reaction to me. I cannot take flagyl. I'm not sure if I'm allergic to it but I had it once before my j pouch surgery and I got so sick from it I ended up in the hospital. [ more ]
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J-Pouch ForumsGeneral Discussion
Gaspacho
skn69skn69
fq this looks good, i googled it and found some recipes. Nearly all require tomatoes, which i can't eat yet. wonder if there is a better way? i like carrot and cilantro. i agree with Marianne... i want you to cook for me.... i can only make 3 things (1 of them is toast) [ more ]
mgmt10 I love, love, love Gaspaco! Now I have to have some. I think you need to come cook for me Sharon,...you always have such yummy suggestions! [ more ]
CTBarrister There are a number of ways to make it using assorted vegetables. Most of the Mexican and tapas restaurants here offer it. I have also seen it prepared with wine. It is one of those dishes with which, if you have an imagination, you can prepare it 50 different ways. I do like the authentic Spanish version of Gazpacho. [ more ]
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J-Pouch ForumsGeneral Discussion
VSL#3
N new2thisstuff
LionsPride I've experimented with different ways of going back on VSL after antibiotics. I took VSL for over a year and was pouchitis free. I stopped the VSL, to see what would happen. Well what happened is the pouchitis came back within 2 weeks. Went back on antibiotics, finished the 2 weeks on antibiotics, started VSL and was having bad gas etc above what I would typically expect. I then tried the following which worked great for me. I completed another 14 day course of antibiotics, cipro 500 x2 a... [ more ]
CTBarrister This is a good point and the only way to know for sure is to stop the VSL cold, and take nothing. If the symptoms continue, then it is probably pouchitis. [ more ]
tammykathleen VSL#3 is something your body has to "get used to". You may want to start at a half dose for a week and then build up. I was told that when the good bacteria start to build up in your body, they do produce gas. Eventually your body acclimates to that. You mention using it as a maintenance therapy. Did you have pouchitis in the past? Were you on antibiotics? Because sometimes after stopping the antibiotics, pouchitis can return and if starting the VSL coincides with stopping your... [ more ]
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J-Pouch ForumsGeneral Discussion
calling all Foodies! j-pouch diet boring!
fqfq
skn69 For those of us who are still intestinally challenged may I suggest Gaspacho? I have re-discovered it just lately and am enjoying the fact that I can eat just about every vegetable in nature without the nasty side effects that I usually have with fiber, skin and seeds...my favorites right now are cucumber/mint, carrot/cilantro/lemon and red pepper/orange...all generously made with fesh herbs and good olive oil. So far, so good...I use a glass to sip them before meals and am actually trying... [ more ]
Spooky I do avoid artificial sweeteners as well as pop but I don't consider that real food anyway so it probably doesn't count! Artificial sweeteners go straight through me. [ more ]
Former Member My screen name pretty much says it all! I eat pretty much whatever I want. Luckily, I don't like spicy foods, so thoses aren't an issue. When I had a large snack of nuts, it was difficult to go for several hours. After years of UC/j-pouch it felt odd to be constipated. I have to watch my sugar consumption - too much and my output is pure liquid. Caffine with the sugar and I might as well not leave the bathroom. I will only eat a few pieces of popcorn, that gave me a belly ache long before... [ more ]
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J-Pouch ForumsGeneral Discussion
Signs Digestive Enzymes / Porbiotics working?
TheresaSTheresaS
TheresaS The psyllium gives me horrible gas, and Beano just doesnt do it for me. Nothing else works as well as Metamucil no matter how much I try to get away from it. Id also like to just have an even flow in life and not have a surprises here and there. My goal, A Better Quality Of Life. I know it's attinable, I read/see people where I would like to be all the time, I just need to figure out what I need to put together to do that. I understand we are all individual and it all works different, but... [ more ]
suebear What are you taking them for? What are your symptoms? Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Belly fat- effects on JPouch?
M msh98991
Colleen2001 I would agree that the extra weight caused pulling on scar tissue/adhesions. I know when I was pregnant, I had all sorts of crazy, horrible shooting pains, which were almost unbearable at the end. After delivery, I was fine. My docs attributed all of it to scar tissue pulling and ripping with the added burden of the baby. I gained approx. 30 lbs with both my pregnancies. I hope you are feeling better. Best, Colleen [ more ]
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J-Pouch ForumsGeneral Discussion
24-hour sinus medications
K kelleyparr
Former Member The "D" (decongestant) part is slow release. You might be better off getting a separate box of Sudifed that needs to be taken every 4 hours along with a regular Claritan. That's what I do. [ more ]
suebear I use 24 hour Claritin and have not noticed a decrease in effectiveness. I think Disneynut is correct, it's not time-release, the drug merely lasts 24 hours. Perhaps it's just not the right allergy medication for you? Sue [ more ]
Disneynut I use otc generic Allegra or Zyrtec and it lasts about 12 hours. The pharmacist told me they really weren't time release, but that they last for 24 hours. Like I said, they really only work for 12. If I'm miserable, I usually take another one after 16 hours or so, or I take a sudafed which usually helps. [ more ]
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J-Pouch ForumsGeneral Discussion
Water intake?
M Megals
bratcat I drink somewhere between 1 and 2 liters of seltzer daily. Water is too bland for me, but the carbonation of seltzer is nice. Since it's just bubbly water, my doctor said it's fine. I never have a problem with the carbonation making me extra gassy or anything. I also usually drink another 20 oz. of a different drink (iced tea, lemonade, soda). [ more ]
CTBarrister I basically gauge it from my pee as well, if it is coming out very dark yellow, I need more fluids, and if it is clear, I am usually OK. In very hot weather, and/or if I am walking around a lot on foot, I tend to dehydrate rapidly, and always have an electrolyte beverage with me. [ more ]
Spooky As others have mentioned, this varies considerably. You may also notice that as time passes, your body adapts and you don't need to drink as much as you did in the beginning. Another caution is actually not to drink TOO much water. It's possible to flush out necessary electrolytes and nutrients by drinking too much. Although it sounds a bit vulgar, at good way to gauge is to pay attention to how much you are peeing. Initially after my coletomy, I was lectured by the nurses and told to drink,... [ more ]
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J-Pouch ForumsGeneral Discussion
Back in the hospital
R rsz
rsz Finally released from the hospital after 8 days, sent home with 2 drains and antibiotics supposed to go for more tests in a couple of weeks. Had an endoscopy through the ostomy and also a pouchoscopy and they found no signs of Crones. Also they did another pouchogram and pouch still has a leak which is the reason for the drain in the pelvis and also have a leak below the stoma site from the loose end of intestine coming from the pouch requiring a drain by the stoma. Still trying to figure... [ more ]
Holly M rsz: I am sorry to hear you are going thru all of this. I had my takedown April 18th and came home from the hospital with two drains, had a small fistula thankfully they all cleared up. However I can empathize with what you are going through. You are in my prayers and I hope you have a good recovery and takedown will be in your future soon. [ more ]
rsz I started to get some pain and swelling around my ostomy site, then in the last couple of days started running a fever decided it was time to head back to the hospital again. Before leaving took a shower and changed my ostomy bag,.while changing the bag I noticed some puss was oozing out around the stoma and more would come out if I pushed on the skin around the stoma. Made the 200 mile trip to CC and went to the emergency room were they did a CT scan and admitted me so far they think that... [ more ]
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J-Pouch ForumsGeneral Discussion
Still on picc line
R RLC
mgmt10 Sorry you are still having troubles Roberta and sorry about your job. Isn't there a medical leave that protects you from being let go? Oh and our dog is notorious for giving us poison ivy around here. I hope brighter days are ahead. Hang in there! [ more ]
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J-Pouch ForumsGeneral Discussion
follow- up appts post surgery
L lab
Disneynut I just went to my check-up last week. I never had a 3 month check back because it was a long drive and I was having no problems (we did it over the phone). I had my take-down in April of 2011 and wanted to wait until summer break to get it done. They went over my history with me, did a manual exam then gave me 2 fleet enemas and did an internal exam. I didn't know I was going to have this exam and did not prep, but she said that was what the enemas were for. I inserted those, held it for 5... [ more ]
mgmt10 I am almost 2 years post takedown and I just had my first scope of the pouch done. And he wants to see me back in one year to scope again and then I think I will be on the 2 year plan for scopes. Right after takedown I was dealing with an anal stricture so I was going for follow ups every 3 months. You should have your pouch scoped if you haven't yet...or at least in the near future...and then go for regular scopes. How often would depend on your doctor. [ more ]
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J-Pouch ForumsGeneral Discussion
Hello all!
BR Brian Rideout
TE Marie Brian, I just wanted to add that I've been diagnosed with PTSD and I never served in the military. I know what severe untreated UC feels like and can only imagine how much worse it was in Iraq. I had my take down 12/29/10 and hardly ever use psyllium or imodium anymore. I have good control and find that looser stools do not bother me like more formed ones do. I take imodium sometimes before bed or for a special occasion, like our son's wedding. I've figured out how to eat bread, bagels,... [ more ]
little greeny I agree, the J pouch diet is a good place to start. I have also learned the hard way about what foods to eat and not to eat (I was stubborn and didn't want to follow the diet). Also, limiting your food intake to several smaller meals per day (I know that may not always be possible) and not drinking while you eat (try to drink water an hour or so before you eat so you won't be thirsty when you eat). The cramping could be because you have eaten something that disagrees with you or because you... [ more ]
Guest What about the rest of your diet? Have you tried following dietary guidlines such as this JPOUCH DIET I've learned the hard way many a times how important it is to restrict your diet to safe foods. For the most part green leafy veggies and fruits such as apples, grapes and perhaps others, come back to haunt me. The safest foods seem to be soft breads, pasta, rice, bananas, peanut butter, etc. [ more ]
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J-Pouch ForumsGeneral Discussion
when can i start eating these fruits?
fqfq
Kline84 I started eating blueberries and melons the day I got released from the hospital after takedown. I also eat steak and corn on the cob. Not sure if I'm playing with fire but I haven't been burned yet I'm three weeks out and have not found anything I cannot eat. Although I haven't tried popcorn. I do however pile on the peanuts when eating ice cream! [ more ]
little greeny Calmoseptine cream is my number one defence against veggies. I put it on as a preventative measure. It helps protect the skin so there isn't any burn. Also, if you start to feel a block drink lots of water and take a hot bath. I found that pineapple and corn were the worst for me (I can eat them both now in small doses without issue) [ more ]
TE Marie I eat all of my fruits, except bananas, in protein smoothies. Blueberries are best when I throw them in my blender with a banana, vanilla protein powder, lots of ice and some coconut water. Then I mix in my daily VSL#3DS. I end up with 3-4 fruit servings, hydrating coconut water, my probiotics and 42% of the daily required protein. I also use apple and white grape juice. They loosen things, can be used to help rid small blockages. I'd just say stay away from skins as they come straight... [ more ]
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J-Pouch ForumsGeneral Discussion
Can you go out at night time?
fqfq
Kline84 I noticed that the more I think about it the more I have to go. So if you can engage in interesting conversation or activities that take your mind of going to the loo it helps. Sort of like when you were a little kid faking sick to stay home, after having to act and convince ur mom u were sick u eventually start convincing yourself and actually feel it. If I keep worrying and my mind is telling me I'm gonna have to go a lot then it actually happens. Another thing I found that helps is humor. [ more ]
little greeny I would agree with Sue. Go out and have fun !! I go out pretty much every weekend and often on weeknights. Like was already said, you are probably a lot more worried about what your friends think of you going to the bathroom then they really are. In terms of your increased motility at night, do you tend to drink more carbonated drinks at that time? If you are drinking soda, drinking out of a straw or chewing gum you may notice increased gas. Also check out the J pouch diet. I was eating a... [ more ]
mgmt10 Spooky brings up a good point. My girlfriend pees like every 20 minutes! (overactive bladder) We j pouchers are not the only ones who have to make several pit stops along the way! [ more ]
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J-Pouch ForumsGeneral Discussion
How do you feel the day after alcohol?
MJ Manuel J.
Former Member ❤️
Specks ❤️
Kline84 I have not had a binge night but I did drink three red beers and a couple regular beers while up camping with no I'll effects. Maybe a bit more gas in the morning but it did not last long. It sure was nice to feel like "one of the guys" again! I have since had a few vodka cranberries also and was fine. I am scared to drink enough to get drunk though because I fear sleeping to hard and not waking up to use the loo if needed. I guess you can say that the j pouch turned this 28 year old into a... [ more ]
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J-Pouch ForumsGeneral Discussion
Low iron and CBC
C chrfor
LionsPride Low iron is one of those 'gifts' a lot of us have from the UC, even after the surgeries and with no bleed. As others have said, sometimes the infusions are necessary initially if your levels are really low but often the supplements taken daily over a long period of time are enough. If they didn't specifically mention it look for a type of iron supplement called 'slow FE'. It absorbs more slowly and is a little easier on the stomach. [ more ]
vanessavy Oh I have tried it all. You name it I have been on it for my leg cramps. My disease causes the cramping in my legs and the tension that never releases. They get worse when my iron is low. When I get an infusion they feel a lot better. [ more ]
mgmt10 chrfor, I don't know if I would consider myself still weak but I get exhausted very easily. I do not have much stamina. I get winded just climbing stairs and I have to catch my breath. It's really annoying. My body has learned to deal with it because I have been chronically anemic for 7 years now. It's so hard on all your organs though. I'm confident that if I get iron infusions I will get this under control. [ more ]
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J-Pouch ForumsGeneral Discussion
Seeking opinions
HemingwayHemingway
Tommy pb Yes you should see your gi or surgeon to make sure all is ok. Also make sure that your not anemic. After my surgery I remember becoming very weak and it turned out I was very low on blood. Wish you the best of luck! The body is amazing and does adjust with time. [ more ]
little greeny I agree with everything that has been said. It DOES and it WILL get better. Give it time. One suggestion at this time is to consider energy conservation. Remember to take naps if you can (if you can't just take time to lay down and relax, don't do too much on your "good" days and don't spend a lot of time worrying. Take time for you, to do the things you like a little at a time. Trying taking a hot bath and drinking some warm milk before bed. Do not watch tv or do anything over stimulating... [ more ]
liz11 couple things to try: try sitz baths, try eating things with tons of protein, and don't be shy about trying some mild over the counter sleep assistance- even baby benadryl. You need to get some rest to heal.. AND to be able to think clearly about your quality of life and big decisions. Also you may need to slow down transit time for your body to more fully absorb nutrients. [ more ]
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J-Pouch ForumsGeneral Discussion
Ostomy #3
C Cate87
jeane I am so sorry for you Cate. I know how rough this has been. Was your surgeon able to explain why the fistula reappeared and did you sense it was appearing before passing stool the way you were? I think you are doing the right thing in letting your body recover from all the trauma you have been through. Get healthy and finish school and then revisit the surgery. By then, they may even perfect it to a greater degree. At any rate, your body will have time to heal and repair and for you to get... [ more ]
tammykathleen Cate, I am just so sorry to hear that after everything, you now have to deal with this too. You have been through so much crap and I wish the outcome had been better. I am sorry. ~Tammy [ more ]
Cate87 Beginning of June*** [ more ]
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J-Pouch ForumsGeneral Discussion
Level of control - question for experienced j pouchers
C chrfor
notsotough Just a thought- I had no problems holding but the pain after emptying turned out to be a stricture. I had it dilated and for a few weeks - no pain after emptying but it seems to be creeping back. However reading others posts it does seem that for a stricture one dilatation is not ususally enough. at least I am not worrying that it is something worse. ps I am seven months out from takedown [ more ]
CTBarrister I have had the J Pouch for 20 years and, except for periods of untreated pouchitis, control is better than it ever was when I had UC. Control is as good now as it ever has been, so long as I am on antibiotics. Even in a pouchitis flare, while there is urgency, I still have the ability to control. It's not total loss of continence and massive stools in the pants as I had many times with UC. [ more ]
chrfor Yes during the day and at night. I can hold it pretty good but I have awful rectal pressure - even right after I go. Hoping that gets better with time. Thought by 3 months out that would go away by now but guess I have to be patient. It makes me nervous to leave the house at night because I always feel like I have to go - even right after I go..... [ more ]
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J-Pouch ForumsGeneral Discussion
Questions on Strictures/Treatment of Strictures
CTBarristerCTBarrister
Ray C Dear DJB, I had nothing to add, just sorry to hear your illness is taking a lot out of you. Hope things turn around soon. Ray [ more ]
CTBarrister I think my Doctor thought that the Entocort would kick in after 2 weeks of taking it with the antibiotics and that I would be able to go off the antibiotics. When I reported these problems to him he told me to go back on the antibiotics and that the Entocort may have needed more time. At this point and after experiencing the sensations I had in my gut this weekend, I would certainly rather play it safe. The plan now is for my Doctor to study my recent MRI alongside my 2008 CT Enterography... [ more ]
Rebe0505 djb putting in my two cents here maybe all this latest develpoment is because you went off antibiotics..i can tell you that one of my awful symtoms when antiobiotic not working or if i were not on them is this terrible feeling of not emptying and straining to relieve myself.. like i have a stricture..so maybe it is just simple like that..my problems presently fall in pouchitis category but i sure as heck have that issue aside from some other goodies i know you did not have like severe... [ more ]
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J-Pouch ForumsGeneral Discussion
Did Asacol ever work for anyone?
Rich_1976Rich_1976
Jan Dollar I was in remission (with a few minor flares until my final refractory flare leading to colectomy) for nearly 24 years with Azulfidine, my husband has been in remission for the most part for about 10 years with Asacol, and my son has been in remission for about 4 years with Colazal. These are all 5-ASA drugs and first line treatment for UC (due to generally good response and low rate of side effects). Since everyone here either had colectomy or is heading for it, naturally they would have... [ more ]
rustyskyline My doctor prescribed Asacol HD 800 for the treatment of Chronic Refractory Pouchitis. Is there anyone else taking Asacol for this? [ more ]
Brian E. I used to love taking loads of Asacol and then seeing them essentially whole in the toilet. It was like a joke, a friggin' joke. [ more ]
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J-Pouch ForumsGeneral Discussion
lots of bathroom trips at work
Holly MHolly M
Holly M Mark, good point, being able to work and keep healthcare benefits that is what is very important to me for sure. I had a fairly good day today. Only ate a peanut butter sandwich for lunch and only had 2 bathroom trips today. It wasn't as stressful as my normal work day either so that may have played a part. Keeping fingers crossed for a good day tomorrow. I don't travel too much either (only 6hrs on weekends to go to our weekend cabin) or go out too much after work. [ more ]
Minn Mark I had my takedown in 2007 and still have lots of bathroom trips during the day and night. I do not eat breakfast, and only a banana at lunch. I eat supper at home, and typically am in bathroom 14+ times per day. This is the system I have evolved into which allows me the most productivity at work. Not great, and I dont go out much or travel etc, but I am able to work full time and keep my healthcare benefits. Try experimenting and see what works for you. Mark [ more ]
liz11 holly have a great week at work. [ more ]
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J-Pouch ForumsGeneral Discussion
gastritis gone after step 1 of 3?
G Guest
vanessavy Yea I don't have colitis but I had a vertical gastrectomy so they think that is what causes it along with trauma from surgery. [ more ]
Guest acid blockers made mine worse but the surgery made it better. only time it flares is when colitis flare and of course after friday colitis should be cured if all goes well... [ more ]
Guest acid blockers made mine worse but the surgery made it better. only time it flares is when colitis flare and of course after friday colitis should be cured if all goes well... [ more ]
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J-Pouch ForumsGeneral Discussion
J Pouch and Urgency
FM Former Member
Kline84 When I have to go it feels like pressure down below and maybe a little bloated feeling from the gas. I can hold it for however long I like though. For example the other day I was up in the mountains fly fishing and had just put my waders on and made it to the middle of the stream when I realized I had to go! Instead of going to the bathroom right away I continued to fish for a few hours untill I had waded upstream to the next set of restrooms at a campground. Not once was I afraid I was... [ more ]
John95 I second what Steve said about the feeling to go which gradually builds. You're able to choose when you want to go. It can get uncomfortable if you put it off for too long, just like if you hold off on peeing for too long. Despite this, there are times when I make sure I know where the bathrooms are, but only when I'm dealing with a bout of pouchitis. Then the urgency is definitely a problem; however, pouchitis is usually treatable, so I didn't let that possibility deter me from getting a ... [ more ]
TE Marie I have more time to get to the restroom with my j-pouch as I can hold it much better than I could before the surgeries. Best wishes for your surgery and remember you can take your time. You can go with an ostomy for however long you want to. Also after living with and ostomy you can decide when or if you want to go ahead with a j-pouch. The difference will be one extra sugery. [ more ]
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J-Pouch ForumsGeneral Discussion
abdominal workout
N new2thisstuff
liz11 of course you can work out.. as long as your doctor clears you. I have no idea why someone said you can't work your abs with a loop ileo. I did all sorts of exercise with my TWO loop ileos... including lots of core work such as pilates. Also lifted weights - though restricted a bit as to how much overhead- ran three half marathons, biked, swam. Exercising will do wonders for your recovery. Just make sure you have your doctors ok and start back slowly. [ more ]
Subsky well with the loop ileo, I'd take it easy with the ab workouts. You shouldn't have any problem doing light workouts until your takedown. Running would be good. [ more ]
dodge I'm 4 month's post pouch formation and had a leak at one of the conection points so for me im looking at least 5 months now till takedown. I had a procedure yesterday to to clean out any infection and make the hole bigger so any infection left has a better drainage point. I also has a bad wound infection which completly opened up about 7 - 8 inches but thankfully has now closed apart from a tiny hole . I'm really eager to get back to the gym as i lost 3 1/2 stone and have complete muscle... [ more ]
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J-Pouch ForumsGeneral Discussion
Fasting
Uncle PocketsUncle Pockets
Uncle Pockets I think I have only had caffeine drinks twice in the past five months. I used to drink cola all the time. Does seem like the diet forced on us with a loop ileo only provides benefit. [ more ]
Guest You're on the right track Pockets. I've learned the hard way many times already how important it is to keep hydrated. Keep away from caffeine too. Everything I drink now is caffeine free. [ more ]
Guest You're on the right track Pockets. I've learned the hard way many times already how important it is to keep hydrated. Keep away from caffeine too. Everything I drink now is caffeine free. [ more ]
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J-Pouch ForumsGeneral Discussion
9 month old w ostomy
clz81clz81
skn69 Don't wish it Vanessavy... I was born with this, lived on fluids til 2 and then had my colostomy on my 2nd BD. It leaves scars....no just physically. I have never, ever known life as a healthy, carefree person...I do not know what going to grade school or highschool healthy is like. I only learned what life without pills, pain and suffering (not to mention public humiliation) was like after I recieved the k pouch. Some people are lucky enough to only retain the physical scars but some... [ more ]
vanessavy I wish I was that young having all this done. I have heard of younger having a colectomy. [ more ]
CTBarrister On the other hand, she will be well adjusted to the ostomy/J Pouch (?) psychologically because it will be the only thing she has ever known, assuming she adapts to it well. I wonder though if they will need to make surgical adjustments as she grows. I hope it works well for her. You are right that it will be difficult for the parents who will become de facto ostomy nurses in addition to changing diapers. [ more ]
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J-Pouch ForumsGeneral Discussion
Better / Just as good as Psyllium?
TheresaSTheresaS
TE Marie I used generic Metamucil caplets and didn't take a full dose of 5 at a time. I took 6-9 a day as 2-3 with meals. I quit using them and digestive enzymes. I stopped fiber and imodium before a year out and the digestive enzymes about a year and a half post take down. I do better with looser stools as the more formed they are the more pain I have. [ more ]
Spooky I found Metamucil seemed to give me excess gas, wafer or otherwise, so I had to look for something else. I no longer take any fibre supplement, but for a while I used Benefiber and I had better luck with it, in as far as there were no side effects to report. And since you can add it to virtually any food or beverage (provided you don't get the flavoured kind, of course!), and since it completely dissolves in water, it's really easy to take. I usually dumped mine in a glass of water before... [ more ]
suebear I like chia seed for fiber. You can purchase it at www.getchia.com Sue [ more ]
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J-Pouch ForumsGeneral Discussion
when did you have confidence to leave your house?
fqfq
TE Marie I wasn't going out at your stage and now only go out during the day. It isn't like when I had UC and couldn't hold it. I eat light during the day and hold of going very much that way. I don't go out to lunch or dinner very often as when I eat I need to go and don't want to use a restaurant's bathroom. When we go out it's usually close to home and we leave as soon as we are done eating. I also carry a pair of underwear with my cream and wipes, in a zip lock bag. Old throw back to UC days. I... [ more ]
mgmt10 I had a stricture too after takedown. I had to have it dilated about 5x. It's gone now but it took over a year to resolve itself. So because of that I never took Imodium either. I wish I had some solid advice on how to slow your frequency. Peanut butter worked well for me after takedown and also rice. Bread too. Everyone is so different. Watermelon actually slows me down but for most people it goes right thru them. Go figure. [ more ]
fq Marianne - interesting, because after the first couple months with the ostomy, i felt fine going out. psychologically checked my bag more than it needed to be checked at first, but eventually forgot it was there. I am not taking immodium because i had a stricture recently and it makes me feel a lil bloated. that happened to you? what else can i do? i eat meat and potatoes, but frequency higher than i like it still (12x) Randi M - you're right, nights are the tricky part, where i'm on the loo... [ more ]
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J-Pouch ForumsGeneral Discussion
C-DIFF Infection Frequency.
P POD
TE Marie I had C-diff with my colon and had a worse case of it with my pouch. I had it along with cuffitis and the symptoms are very similar. More frequent and looser BM's pain and sometimes a fever, although I don't get the fever. I also had bleeding and don't know for sure if it's a C-diff symptom or not. It is for cuffitis but not everyone with cuffitis has bleeding. My GI took a stool sample while doing a flexable pouch scope for my clearly visible cuffitis. I had C-diff too. I had not had any... [ more ]
Connie My son has had it once in the 11 years since his take-down, and it was due to taking Augmentin for a month. But his GI always tests to rule out c. diff when ever he has pouchitis. Especially when someone has had it before, it's always a possibility. [ more ]
Lorsall I have had c-diff twice since my take-down, which was a little over two years ago. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Wisconsin pouch dr????
J Jasmine 2
Jasmine 2 I found a doctor at the UW Hospital in Madison that will do scopes of a Kock Pouch. They do other pouches at the UW, but not Kock Pouches. So I told them they may have my scope used as a teaching tool for the hospital as it is a teaching Hospital. The more doctors interested in the Kock Pouch the better..... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
herbal supplements
N NJK
Spooky I've been drinking valerian tea for years, before and after UC. I've never noticed any problems. In fact, valerian is supposed to be one of the natural remedies thought to calm the digestive tract, among its other benefits. [ more ]
skn69 I take both constantly without any incidence. Sharon [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Intra Abdominal Ileostomy
C chrfor
vanessavy I have it. Compared to my friend who has a jpouch the same time I had my surgery I have way less issues so I guess it is good to go. It is by far not like a colon but I didn't want the jpouch even when it was iffy I could get one. [ more ]
skn69 Chrfor, I have had a k pouch (the predecessor of the BCIR) for 33ys and am very happy with it...the Bcir is a modified version of the k pouch, the main difference being that they use a 'living collar' to prevent the valve from slipping or twisting (doesn't always help)...k pouchs/Bcir have less incidence of pouchitis and are great alternatives if you cannot have a j pouch or if you have a failed j pouch for whatever reason. If your anal exit is intact and you can retain your rectum and/or... [ more ]
suebear Yes, it's the same thing as a k-pouch only with a proprietary valve. One of the disadvantages is that the BCIR surgery is only performed in 2 US hospitals, one in Florida and one in Los Angeles. I researched this surgery, and almost had it, before opting for a jpouch. Sue [ more ]
See all 3 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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