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J-Pouch ForumsHelp! Need advice now!
Gas
T Tiara
skn69 Have you considered gallbladder? It could be that or gastritis... Do you still have your gallbladder? Sharon [ more ]
Former Member Tiara, Do you have allergies? Or maybe a case of the flu? This always occurs to me whenever my allergies have a flare or if I get a common cold. Under all the circumstances of the pouch & me having seasonal allergies, this always does this to me - sick - gas - vomiting. [ more ]
Tiara This has been happening for about 2 weeks and I'm still pooping , not sure why this is occurring I'm thinking maybe gas or food that I have eaten [ more ]
See all 4 replies...
J-Pouch ForumsPouchitis
good g.i. docs in NYC
S scallop
AllyKat I'm at Jill Roberts as well [ more ]
rlblife I am with Dr. Mark Chapman at Mt. Sinai, but he is a little older, so if you think someone younger might be better, Dr. James Marion is great- anyone really is fabulous: they have an entire amazing IBD center there with doctors, nutritionists, surgeons if you need them, etc (ranked #5 best GI center in the country after of course Mayo, Cleveland Clinic, etc.: https://www.mountsinai.org/ibd-center [ more ]
AllyKat I'm at Jill Roberts as well [ more ]
See all 7 replies...
J-Pouch ForumsPouchitis
Natural Treatment for Pouchitis?
FM Former Member
AllyKat You need to take at least 1600 mg of turmeric I take between 2000 -3000 don't take more than that [ more ]
Sophia Sauzier Does Tumeric good for pouchitis? [ more ]
Former Member Thanks for your replies guys! And just kind of a little more info, I rarely get the pouchitis, this might be like the second time I've gotten it and my doctor didn't seem too worried. She just gives me the two weeks of Flaggyl and that cures it up right away. This past time I had it a few weeks ago and it recently started coming back so I got worried but I remembered I didn't really take the full two weeks of Flaggyl, I stopped. Which probably bit me in the butt lol but I 'finished' it and... [ more ]
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J-Pouch ForumsPouchitis
Never feeling better
JB Jordan B
AllyKat I felt that way as well I'm doing good on Entyvio I hope u find something that works [ more ]
Scott F Good luck, Lauralee! [ more ]
LauraLee Hi Scott, I was waiting a few days before to write about my Pouchitis and the meds I'm using. I talked to my GI again and he said I should give another chance to Cipro and I did. The results are good so far, started them five days ago. My biggest issue is I'm working out of the States for a month, and is complicated to get antibiotics without seeing and specialist here and I don't know anybody, but luckily I brought some Cipro (I'm like a mobile pharmacy every time I travel) and seem to work... [ more ]
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J-Pouch ForumsPouchitis
Anyone here who has had their pouch removed and gone back to the bag?
HaidalynHaidalyn
AllyKat Why don't u have the cuff removed first I had mine removed but to be honest it still didn't cure my pouchitis and I still had inflammation occurring at the bottom of the pouch [ more ]
TE Marie I first was diverted to an end ileo but my pouch still problematic. I had similar j-pouch problems as you are experiencing. I wish I had listened to my surgeon and had it all done in one surgery as I went back 6 months later and had my pouch and anal stump removed. I am glad I did it as the quality of my life is much better now. In had the removal surgery 15 months ago. If you have not I suggest you get a second opinion. I highly recomment the Mayo Clinic. Let me know if you want any... [ more ]
Mysticobra That's ok. When I had it removed I was closed up down there. Sewn up. I don't miss it at all. R. [ more ]
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J-Pouch ForumsGeneral Discussion
Diahrea (more than usual) from Ketogenic diet
S slouchypouch
slouchypouch Just a quick update. I increased my immodium to 16mg daily and it is helping a LOT. Years ago I had tirtrated down to 4-6mg daily thinking a higher dose didn't benefit me but I was mistaken. My stool is still very liquid but I'm having BMs much less frequently and I'm absorbing more of the fluid and urinating significantly more at 16mg daily. Thanks for the help all! [ more ]
slouchypouch Thanks all, I'll give Konsyl a shot. Cheese doesn't seem to work for me, Jan, but heck I haven't really tried any foods in isolation for a day or days which I think would be necessary to really get to the bottom of it. SKN, moderation is the best but isn't easy coming from a culture of non-moderation and overeating. 50% of us Americans have some form of early metabolic disorder or diabetes. I'm convinced that the extreme Ketogenic diet ameliorates numerous disease processes, especially... [ more ]
skn69 Slouchy, I have tried a lot of different diets for both my health, my pouch's health and for weight... I still usually live off of a low carb, high protein diet because it is health, weight, and pouch friendly but I do not cut out all carbs...I have 'other grains' like rye, bran and other whole grains that allow my body to bulk up a bit. I have found that persimmons thicken my output, so do most whole grains. I did the eating one meal a day thing in the very beginning....mostly because I did... [ more ]
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J-Pouch ForumsGeneral Discussion
What's In Your Hospital Bag?
Erika SErika S
AllyKat After so many hospital stays I lost count I bring nothing except my phone and iPad and some extra underwear [ more ]
skn69 My number 1 "must not forget" for any surgery is Chloroseptic throat spray for the post throat intubation irritation and cough... Everyone else has it pretty much covered...perfect lists. I also take baby wipes, earplugs, a very comfy pillow and a perfume or scented spray for the odours that will me. Good luck and don't sweat the small stuff. Sharon [ more ]
CeeeeCeeee Some of my favorite music was very welcome. A sleep mask because it seems as though hospital rooms are always brightly illuminated! Instead of a robe I used two hospital gowns. One with the opening in the back and the top one with the opening in the front. Small notebook/pen/pencil to write questions in between your doctor's visits. They may laugh at this but it really helps. Best wishes! [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Pain in upper right quadrant after or before meals
skn69skn69
AllyKat I went thru this for 2 years all tests were fine then one night the gall bladder just blew the pain was so bad I thought I would die in the way to the hospital stones in the ducts the next day out and have been fine since I'm sorry your going thru this it's very frustrating [ more ]
Scott F Sharon, you might just have to have the endoscopy, hopefully done by someone clever enough to look for lots of things during the procedure. I'm sorry you're going through this! [ more ]
skn69 Sounds about right Scott, Feels like it is still there giving me nightmares...one doctor thought that the space that it occupied (it was 1kg or 1 litre full or bile)...a huge space...had pushed things aside and that the space has filled with scar tissue...not a pleasant thought...another thought that it was my stomach going into spasm whenever I eat...no 'repeating or burning' post meal...just a knife in there...twisting from front to back...darn...just when you think you got rid of one... [ more ]
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J-Pouch ForumsGeneral Discussion
quinoa?
I iHateColitis
AllyKat Yes! And thanks to my adhesion surgery a few years ago I can eat salads again [ more ]
Spooky Yes, with no issues, though if you do eat a lot of it, it can cause bulking - depending or your transit time and motility, that can either be a good or bad thing for you. If you're concerned, cooking the quinoa a little longer than the recommended time generally makes it softer and therefore a little easier to pass. [ more ]
CTBarrister I can eat it but don't particularly like it. It is a good carb substitute, but these days I use mashed cauliflower in place of bread or rice or potato. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Inflammation without Symptoms?
B BlueFlame
AllyKat My surgeon told me that he sees this all the time no symptoms but lots of inflammation now me in the other hand very little inflammation and terrible symptoms [ more ]
Jan Dollar Could be that you've just adjusted to chronic inflammation, and also the dietary indiscretions are probably irritating the already inflamed gut, proving that your inflammation is there. Generally we say that if you feel well, you are well, but it sounds like you have to adhere to a pretty strict diet to feel well. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Feel like giving up .. jpouch.. despair..scar tissue
K KC23
Vergie It's been awhile since I have been on forum. I have had my J pouch since 2011. I had to have surgery in July to remove scar tissue. According to my doctor I was a "mess"! (I tried telling her that)! Now, I suffered an obstruction earlier this month but made it through with no surgery!! Whew!! My issue is that I have the sudden pains and also have the irritable bottom that will not heal. My doctors answer is always the same, it will get better with time!! How much time? Does anyone have any... [ more ]
skn69 So terribly sorry, I know how overwhelming it can all be...as you said, it has been a horrible year for you. I get phantom pains in my upper right quadrant...they take my breath away...no diagnosis...1st they thought that I had stones in the common bile duct, then adhesions, now I just accept that they will come, throw me for a loop and then be gone until the next time...mine are not pouch but surgery related...probably due to all of the surgery that I have had (or phantom gallbladder... [ more ]
Bobish Cramping pain is fairly common. Mine is quite intense and lasts for a second or 2 before passing. It generally indicates to me a bathroom break is required, the longer I defer that break the more painful it gets. Maybe you just need more toilet breaks? twice a day is very low for a jpouch, maybe you are over medicating or holding too long? If not maybe you would benefit from taking a laxative to encourage you to go more often? A jpouch typically has capacity to hold 300ml (mine is slightly... [ more ]
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J-Pouch ForumsPouchitis
Probiotic/Echineacea
M Marianna
Jan Dollar What was stated before jibes with what I've read before, that those who have autoimmune disease do NOT want to "boost" the immune system, since it is an overactive immune system that caused the problems in the first place. That said, You'd have to buy into the notion that echinacea supplements would actually do what you'd hope they would do, namely "boost the immune system." There is not much evidence in that regard. So, not likely to help or hurt (except maybe your wallet). [ more ]
Pouchomarx I just started taking this to boost my immune system.... I don't see how that would hurt people with an autoimmune issue??? I see it as only helping it... can anyone elaborate on this? [ more ]
JHendrix I don't really know for sure but I've understood that probiotics populate the gut with diverse bacteria which is beneficial. Echinacea (and maybe ginseng?) boost the immune system. For those of us with auto immune disorders, our systems are already in overdrive at times and likely doesn't need that boost. Within weeks of having the j pouch procedure surgery I thought I was getting a cold and took my 'go-to' Cold FX. I developed an autoimmune rash all over my legs. I was told it was a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
military acceptance
T tentacle245
Jan Dollar With an all volunteer military, they can be as picky as they want to be. I believe that most of the issue is not wanting to sign on to potential troubles down the road, because any illness you develop after you are in, the military owns. On the other hand, there are numerous careers in the civilian sector that contract with the DOD without the onerous health restrictions. I had a long career with the VA long after my UC diagnosis. Jan [ more ]
CTB23 I guess I was lucky. I was able to do my 20 years, 4 active and 16 reserve, before I was diagnosed with UC at 60. I did have issues for quite a while before that but I guess it was mild enough that it didn't interfere enough with my job. Of course I also was not in the infantry, so that probably made life easier, and I pretty much always had access to a bathroom. When I was finally diagnosed it was moderate to severe pancolitis. I guess if things had been bad enough at the time, I would... [ more ]
Maguire37 @CTBarrister , thank you for your kind response. I believe when you have the calling and desire in your heart, then you exhaust all avenues to reach your goal. I, along with countless others who feel we are more fit(because we have to be) than others without a history of health issues, hope that that desire never subsides. I know that there has to be at least one other soul in the greatest military in the world that represents the greatest men and women of the greatest country to ever exist... [ more ]
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J-Pouch ForumsPouchitis
Second round of Antibiotics
MochiMochi
Scott F Bleeding is more commonly associated with cuffitis than pouchitis. You could easily have (or have had) both. Cuffitis often responds to mesalamine enemas or suppositories (like Canasa). Sometimes rectal steroids (Uceris or Cortenema or Cortifoam) are used, especially when mesalamine alone fails. Uceris would usually have fewer side effects than the other steroids. [ more ]
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J-Pouch ForumsHelp! Need advice now!
sauerkraut
MIKEEYMIKEEY
MIKEEY Thanks for all this wonderful information. Take good care and God bless. [ more ]
CTBarrister Just wanted to post that I tried a really good new organic Sauerkraut tonight, made from local Northeast-grown cabbages, called Real Pickles. It is a company apparently based in Greenfield, Mass. I found it in the refrigerated foods section of my local health store here in Connecticut. It was very expensive, and very tasty. One of the better American krauts I have tasted. [ more ]
MIKEEY Thank you again for your help and concern. [ more ]
See all 23 replies...
J-Pouch ForumsHelp! Need advice now!
Running out everywhere
L LoveLife
Former Member I'm pleased, you've sought assistance from the Hospital. When you say " you can't even keep water in " were you vomiting ? I feel you may have dehydrated; now you're in Hospital, you probably already know that. Whilst I was awaiting my takedown surgery, I was unable to absorb sufficient fluids despite how much I was drinking; this occurred often and each occasion resulting in an emergency admission into Hospital by Ambulance for IV fluids. It's true to monitor the colour of urine output and... [ more ]
LoveLife Thank you guys. In the ER now getting IV fluids. Had hoped to avoid it though [ more ]
Scott F It can be hard to decide when you're getting dehydrated enough to warrant an ER visit. If you're delaying, pay attention to your peeing - if it gets very dark or stops you have a serious issue. In the meantime, you can try sips of Pedialyte or other Oral Rehydration Solution. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Mayo Clinic Rochester
D DavesGirl
hbrannon Keep us posted on his progress. Been an S pouch patient from Rochester for 35 years. Have had some problems and am sure will be facing this at some time. He's got this. [ more ]
DavesGirl Thanks Jan. This was the second opinion. And at Mayo, we feel they know what they are doing. With everything that his pouch has (fistulas, strictures, abscess), everyone feels this is the best option. [ more ]
Jan Dollar Sorry about the unwelcome news. I suppose you could still get a second opinion regarding a continent ileostomy. But whatever you decide, just know that nearly everyone who has had to revert to an end ileostomy has adapted well and had a good quality of life. Actually, the satisfaction rates of end ileostomy and j-pouch are very similar. It is just hard to wrap your head around it at first. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium
S Sk
TE Marie My surgeon scheduled out how much and when to take Imodium/loperamide and metamucil. That was right after surgery. [ more ]
Winterberry SK, I've attached a link to a site that has lots of simple, sensible information about the surgery we've all been through. It refers to cancer, but it relates to the diet that j pouch patients should follow. You can search the site for what you need. I hope you can access it. I don't know if I copied or pasted it correctly. Another resource can be the hospital your surgeon and his team work from. Major hospitals usually have a dietician on-staff who will be familiar with ostomy / j pouch... [ more ]
Bobish To be honest doctors advice is probably overrated at this stage. They have done what they can, they have no way of knowing how well your body will cope, what will help, what will hurt etc, it's all individual, and you already have more experience of living with a pouch than they do! Usually post take down people stay quite closely to the ostomy diet sheet and slowly introduce be food.. so basically white and beige processed food that mulch down to nothing.. simple did such as chicken, fish,... [ more ]
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J-Pouch ForumsOstomy & Skin
Best Product?
D DavesGirl
TE Marie It depends on the position on you abdomen and how much fat/flab you have. For example my abdomen is flabby so I need to wear a concave fitting appliance. I had a 2 piece convatec that fit ok but found a one piece Hollister appliance that works better. As people are suggesting try out every brand you can. They normally want you to describe what your abdomen looks like after surgery. So I suggest you use what the stoma nurse advises first and then try other brands. They do vary quite a bit. I... [ more ]
Winterberry When I had my temporary ostomy, the ostomy nurse signed me up with a few companies and they sent me supplies to try. I was most comfortable wearing, and 100% impressed with, Coloplast. All Coloplast bags are made of a new type of material for ostomy bags, a type of fabric, instead of plastic. You don't feel like you are wearing a medical appliance, but almost as if you are wearing just another piece of clothing. That is Coloplast's thinking and that's what they produced. The fabric is soft... [ more ]
Mysticobra It's individual. Get samples now before he gets it. The hospital will have one brand. And then when you get home you can try others . Every manufacturer will send you a few samples if you ask I use a two peice drainage from convetec. Has a velcro closure. Just let him heal well first. Then try different products. Richard. [ more ]
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J-Pouch ForumsPouchitis
Pouchitis?
J Jason4
Scott F Yes. From the VSL3 web site: ------- What if I experience bloating symptoms? Mild bloating may occur during the first few days after starting to use VSL#3. This is usually a transitory phenomenon due to the changing intestinal microflora. If you experience bloating, you may need to reduce your daily intake to allow this adjustment. It is best to report any unexpected reaction after consuming VSL#3 to your physician so that the symptom may be evaluated in the context of your general health... [ more ]
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J-Pouch ForumsPouchitis
Lingering Pouchitis
SA Swag Anderson
jeane Swag, i had a lot of the issues you are dealing with. It really took me the better part of two years to get off of antibiotics. I know that sounds awful but I am seven years out and although I have had my share of complications I have been off antibiotics for at least a. few years with just quick flash doses if I suspect Pouchitis. For ome reason it seems some of us take longer for our pouches to adapt. Don't give up. You may want to try another antibiotic. I too swear by Cipro but be very... [ more ]
Scott F Swag, it's too early to consider this chronic pouchitis - you were treated once with a single antibiotic. What antibiotic was it? DId it help, until you stopped it? It's common for some of the pouchitis antibiotics to fail for a given person, but it's unpredictable. For example, Flagyl alone never helped me, but Cipro was a wonder drug. Also, have you tried soluble fiber? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Horrible pain - anal fissure
C canlafre
Wee sylv I hope your pain has settled. I just wanted to add to my original post, I was being treated for anal fissures though my GP couldn't see or feel any. I'd had a fissure in the past and this felt different. I requested an outpatient appointment to see my surgeon - I live in Scotland btw, an emergency referral led to an 8 week wait! However that's besides the point, I had a really good discussion with the surgeon who appeared to know exactly what I was describing- he has suggested that in actual... [ more ]
canlafre I keep having pain at the top of seton. And the fissure that keep "cleaning out keeps causing issues. Agh [ more ]
Unholy Poet Yes botox successfully rid me of my first fissure 15 years ago, but unfortunately failed with my most recent one. [ more ]
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J-Pouch ForumsGeneral Discussion
Does anyone else feel weird if they don't eat for a day?
A AARON
AARON I will try those foods, thanks. [ more ]
AARON Yeah I tried that. I have tried everything now. [ more ]
Winterberry Have you tried Metamucil? In my early days I used the orange powder. It helped solidify things. I used slightly less water than recommended, and drank it fast before it could gel in the glass. Try to eat something, a complex carb, every few hours. Oatmeal and banana, whole wheat bread with tuna, hummus with peeled cucumber, if you can tolerate, so you don't get dizzy. [ more ]
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J-Pouch ForumsGeneral Discussion
Yearly pouchoscopy
M Momma
CTBarrister Both of my past two GI docs believe annual scopes are warranted if there is a presurgical diagnosis of dysplasia (low or high grade) and/or a history of inflammation of Pouch. They believe annual scopes are automatic if it's one or the other and my current GI believes in more than annual if there is a treatment change (e.g. Remicade) for the inflammation, in order to assess the effectiveness of the treatment. If these things do not apply annual scopes may not be warranted. [ more ]
Spooky I do not, but this is one of those issues where "the jury is still out," though it also depends somewhat on your pre-op diagnosis and your current pouch function. There are some surgeons who believed that we all need annual scopes given that there is a evidence of increased risk of cancer in retained cuff. Also, if your pre-op diagnosis was colon cancer or dysplasia, then yearly scopes are something yo may want to entertain. Certainly as well, if you are having issues with your pouch - eg... [ more ]
JJA I'm doing "well" on antibiotics and immuran. My doc wants to scope me every 3 years if haven't been seen for any "issues" prior. [ more ]
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J-Pouch ForumsGeneral Discussion
1monthafter osteomy reversal to j-pouch
WillyWilly
Jfill21 Hi Mama Chow, I had my jpouch created at CC last month with Dr Hull. Now trying to schedule my takedown in early late Oct/early Nov. I'd love to hear any advice from your own experience following takedown to where you are currently (offline if you prefer). I'm looking forward to takedown but of course I'm apprehensive. So far so good following 2nd surgery 6 weeks ago. [ more ]
lablover Take Imodium(once a day), eat a banana a day and exercise those muscles. Be patient with yourself. It took my husband awhile, but he is happier with the j-pouch than having that dreaded colitis that never went into remission. Good luck [ more ]
Mama chow My doctor also gave me a prescription for lidocaine that is really nice to use with their cream I had my surgery at the Cleveland Clinic and they gave me but cream that's amazing [ more ]
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J-Pouch ForumsGeneral Discussion
Getting a massage
MC Mama chow
Mama chow Thank you spooky . I do good during day night I'm still up3times. Any suggestions? [ more ]
Spooky I'm not sure that a massage would cause increased frequency. If anything, maybe if you were a bit backed up or your motility still a little sluggish post-op, the massage might have helped relax your muscles and in turn get things moving - in that case perhaps it's a good thing! Generally though, you will notice a lot of changes in your frequency/consistency especially in the first 8-12 weeks post takedown, so this could also be a normal part of the process as your body adjusts. The massage... [ more ]
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J-Pouch ForumsGeneral Discussion
I'm hungry!
S Sk
Winterberry If you don't feel like cooking, go to the supermarket and buy a whole rotisserie chicken and make several tasty, nutrious meals from it. Use kitchen scissors or sharp knife to take apart the chicken so that you have large slices of the white meat, dark meat, wings, thighs, etc. Anything that is left pull it apart with your fingers. You know pulled pork sandwiches? Same thing. Use the large slices of chicken to make sandwiches with interesting breads or croissant, use garlic mayo, bacon... [ more ]
skn69 Baked potatoes (6 minutes in the microwave oven +/-) and either a sharp cheese or other 'tasty' sauce or cream with chives...I like mozzarella and a tablespoon of tomato sauce too...cheap and easy. The other one was heating up a bowl of tomato sauce and add parmesan cheese or other tasty cheese and mic for another minute...dip corn chips ( very pouch friendly) into it...made for a very easy snack. Anything chicken...ground, grilled, baked, boiled....with a bit of chicken broth and tiny pasta... [ more ]
Bobish Try meats, like rodizio style. Or pizza/burgers. If tomato annoys you creme fraiche is great on a pizza. Go easy though, let yourself heal, if say at least a month. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible UC in 2 year old
heverhever
hever Hi Sharon, thanks for your help, her GP has recommended probiotics, so we'll see if it helps, the allergist doesn't really help, she did recommend his formula, and said its a complete food for him and wouldn't need anything else, and he is gaining weight, so thats good, it'd just be nice to give him a proper dinner and spoil him a bit afterall he's put up with and still has to go thru, I really feel sorry for my daughter when Blake's cousins are with him and they just eat anything and... [ more ]
lablover Aww, that poor guy. Sending cyber hugs to all of you.. [ more ]
skn69 Ok, I understand...most doctors do not believe in it...tell her that probiotics can help, are 'harmless' unless he is allergic to dairy or he can get his share from anything that has been in brine. I do not believe in Hocus-pocus either but sometimes traditional medicine can be helped with paramedical advice... Keep me posted Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
Metamucil Multi Grain Fiber Wafers
T TCM
JJA The wafers worked great for me, but over the years I developed a taste aversion to them, and I also didn't need the extra calories. I use the capsules - they work fine for me. I know my habits, so (for example if I am drinking beer and eating popcorn I will have a rapid transport time), so just take them more often. Generally, I have found the capsules to work in regular circumstances-easy to test - if they haven't dissolved in transit, they will end up in the toilet bowl a short while... [ more ]
Scott F We found some of the Metamucil wafer flavors taste okay, but a couple of the flavors seemed yucky to us. We nicknamed them "nasty biscuits." We've stopped using them as a source of fiber, but now the powder and capsules are called "nasty powder" and "nasty capsules" in my house, even though they aren't nasty. [ more ]
TCM Mary, They taste fine, pretty good really. I have the cinnamon spice but you can also get them in apple crisp flavor. I will try them next. I like that they are so convenient, so long as you don't turn them into crumbs as Scott noted above. I also bought some packets of Benefiber which can be stirred into water, hot drinks, juice, soup etc. I will be traveling several times in the next month and take both types with me to see how they fare on the road. My middle name might as well be... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Takedown was Monday, now what?
C Coleeneedstogo
Winterberry Congratulations! You got through the tough surgeries. My very first food when I got home from reversal was a sunny-side up egg on toast. And a strong cup of tea. After that almost all my meals consisted of high protein foods such as chicken, fish, tofu, white pasta, white rice, lots of wilted spinach as my vegetable. Breakfast was toast with almond butter and soft boiled egg with lots of salt because we need higher salt intake until our body is used to living without a colon. Lunch was bone... [ more ]
Bobish For the first few weeks I followed the ostomy diet and took probiotics. It was a struggle to eat anything to be honest. As you get stronger you can start introducing me foods. Don't rush though. Sounds like your doing fine so far [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch and slow transit time
S Sk
Jan Dollar I echo Scott's suggestion of a fiber supplement, psyllium in particular. For some people psyllium has a mild laxative effect (as opposed to other fibers like methylcellulose). It can be a mild irritant and cause some gas, both of which tend to stimulate the gut. Jan [ more ]
Scott F Hi, SK. Hopefully you aren't taking any opiates, which are the classic bowel slowers. In any case, I'm not sure that focusing on transit time is necessarily the best focus. None of us can turn off bowel activity at a particular time by scheduling meals, and it's not like the whole meal shows up at once. Those of us who sleep through the night are mainly benefiting from increased pouch capacity, I think. This takes some time and practice, sometimes called "stretching the pouch." Experiment... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch Revision Updates
J JsWife
Allin I had my j pouch done in 2011 after a couple of years of dealing with what seemed to be pouchitis I decided to go to NYU to meet with Dr David Hudesman Professor of Gastroenterology to consider a permanent bag at that time I was going 15 -20 times a day he did a full evaluation I entered into a study which I failed out of and concluded that he thought my pouch was failing . He informed me that Dr Remzi was transferring to NYU and suggested I get him to take a look at my case after a bunch of... [ more ]
JsWife Thank you for the information, it's so helpful to hear details of what to possibly expect. Haha... my husband loves food too! I know it's such a fine line and a matter of trading one issue for another. :-/ Hoping for a better outcome than what he has been dealing with... hoping the same for you as well! Thanks again! [ more ]
Pouchomarx yes its daily, its been 7 months since being reconnected. I square up a few sheets of toilet paper and stuff it up against the anus. I just change out when I go to the bathroom. Sometimes there is a very small stool spot sometimes not. more times not but use it as precaution. I rarely have leakage at night unless I eat just before bed, which with my schedule, I tend to eat later. I know my diet needs to improve, so maybe it will decrease even more if I watched, but I love food too much..lol... [ more ]
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J-Pouch ForumsGeneral Discussion
possible infection and what to do
L ljk
Jan Dollar Tough call. You know your own body. However, it would be unusual to need IV antibiotics every time you get pouchitis. Maybe you just need a different oral antibiotic, a different dose, or a combination. But, with it being the weekend, you may just have to go to the ER or urgent care for follow up. In the future, check back with Dr. Shen's office if you do not see improvement after a few days, rather than waiting the full course. Jan [ more ]
ljk Hi me again, Leslie pouchitis I there anything I can do at home to help treat this so I don't have to go to the hospital? thanks Leslie [ more ]
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J-Pouch ForumsHelp! Need advice now!
possible infection and what to do
L ljk
Scott F Leslie, is your pouchitis currently being treated? Most of us with chronic pouchitis have to stay on antibiotics (or sometimes biologic medication) to be well. Chronic pouchitis can be helped by probiotics (like VSL #3) and/or a very-low-carbohydrate diet. Usually antibiotics are needed, though. [ more ]
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J-Pouch ForumsGeneral Discussion
Fiber
noya12noya12
CTB23 My surgeon suggested Benefiber or Metamucil Clear as they appear to cause less gas. I had previously used Benefiber due to diverticulosis so I went back to it and it seems to be working well for me. [ more ]
Ploppy How funny, I cam on here to look at what people said about fibre, and it was the first topic! I have a pouch, and I have SIBO. Gas/wind are a huge issue especially if I have sugar, but even with no sugar. The doctor has suggested fibre but I am concerned this will give me more gas. Has anyone had problems with gas when taking fibre? Or has anyone had it help? [ more ]
Bobish Fibre is a normaliser for most people. For me it slows me down and gives me more control. It's probably a life long thing to be honest, and just becomes part of the ritual. I only have it once a day though, usually evening meal. Any more than that gives me butt burn for some reason [ more ]
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