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J-Pouch ForumsK-Pouch Korner
Pouchitis in K pouch--any experience?
J JLH
Patricia Walker Yes Sharon I agree. I have had bleeding simply from the catheter. Seems not to happen now but I am having less problems these days with the valve catching. One thing that has improved. [ more ]
skn69 Just a side note...There is bleeding and bleeding...3 or 4 kinds to note. 1. Outside or bright red bleeding comes from the stoma or the 1st centimeter or 2 of stoma...it is bring red, usually only on the sides of the tube or the paper and is caused by granulation (those white bumps that grow on the outside and edges of the stoma) or some irritation around there or in the valve itself. 2. When the blood sort of gets into the tube, coats it from the inside and outside or is very slightly mixed... [ more ]
Patricia Walker Just another thought regarding bleeding. No nothing to worry you. Now they are removing sugar from drinks the horrible substitutes for sugar, I have found can cause bleeding. As I usually know to avoid these drinks it is unusual for me to drink them. But I found this only happened following these drinks. No more problems so far, as I stick to mineral water. [ more ]
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J-Pouch ForumsPouchitis
BAD side effects from Cipro. Any good alternatives to Flagyl and Cipro long term for recurring pouchitis?
TB Tracy Bug
Patricia Walker I have found cipro really helpful. Problem is in UK GPs will now not supply this. I believe this is due to using it over a long term. All I can do now is look at every aspect of food. I know I cannot absorb fats in my diet. I am seriously so good. I have great problems with dairy and now just a small amount of bread. Looking into the Hay Diet. My surgery for K Pouch was over 40 years ago but I am still learning about food. There is a lack of anyone to talk to. My general health is good and I... [ more ]
Franklat Twinkie / marcus, I get a prescription from my GI (or he calls it in directly to the pharmacy). I use a local compounding pharmacist. I'm in NY (Long Island). [ more ]
Marcus1959 I'd like more information on this as well just in case there is a future need of them. Thanks, Mark [ more ]
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J-Pouch ForumsFAP Forum
Weight
M Mmtaylor4642
Sbevin I have MYH-associated polyposis, MAP. It is similar to FAP. The doctor could no longer keep up with the number of polyps I have so I had a total colectomy on 6/15 and my takedown on 10/15. I can't believe that it is almost two years since my surgery. I went for two consultations with surgeons in and near Philadelphia. The surgeon at Penn had told me that she didn't even want to leave any of my rectum. She wanted to take out everything and sew up my anus and I would have an ostomy for the... [ more ]
SonnyJ215 I was diagnosed last September with FAP never heard of it before knew nothing about it all I know is I had over a 100 polyps in my colon and rectum and required to be removed so I search for the right surgeon in Philadelphia I went to HUP hospital in November to meet with her and had my colectomy on 12/15/15 I was on the ileostomy for 9 weeks and had my reversal takedown on 2/19/16 I'm very grateful to be off the bag but I would have never thought that recovery of the takedown would be so... [ more ]
TrishD Make sure you get your Thyroid checked. There is a connection of Thyroid disorders and FAP. An underachieve Thyroid can cause weight gain. If you're tired, always cold... Those are some of the signs of H ypothyroidism. Been there. [ more ]
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J-Pouch ForumsGeneral Discussion
Symptoms
ConnlaBOIConnlaBOI
EricaLeeJpoucher I got my surgeries done because of having fap which caused hundreds of polyps to grow on my colon. So I had to get the surgeries because otherwise I would've gotten colon cancer. Before the surgeries I wasn't as tired as I as I am now. I don't sleep good because I often wake up to go to the bathroom a lot. I usually can get a little sleep but today I got hardly any sleep. Hopefully it won't be like this forever. You might not have that problem though. [ more ]
Pouchomarx I guess it depends. I am on my second jpouch and I still get times of fatigue and joint pain. I think its all part of the auto immunity in us. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Flared up and leaving for holidays tomorrow....
HaidalynHaidalyn
Haidalyn Thanks guys!!! I know you all understand! [ more ]
Randers.USA Maybe try local type meds... Rowesa, mesalamine, entocort...for diet, stay away from sugars, have bland foods...also, use baby/wet wipes instead of or in addition to tp..some have aloe, some have no alcohol, just mild ingredients safely used for infants...then use a skin protectant...also, perhaps a short term of medrol ... This is just info based on me being a former j poucher with experience in pouchitis, etc...get physicians advice/direction in regard to the above suggestions .. hopefully... [ more ]
BuckeyeNate That is a bummer -- sorry to hear. What bad timing! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Just Got Back From Hospital - Need Advice
temotytemoty
temoty thanks, I'll ask about the dilation. I've never had that done and I'm starting to get angry that a doctor has never mentioned it. [ more ]
Pilot Debby You know you sound exactly like what I went through I had thought it was a obstruction up higher but my doctor at the CC told me that was the back pressure from not being able to eliminate my pouch totally and I became very gasy. My I did have a obstruction also at one time and the two are similar feelings, after that I did not know if when I had similar complications if it was a obstruction or I needed to be dilated again. Be careful with the bananas they have a lot of fiber in them. Many... [ more ]
Not your average gal! ❤️
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J-Pouch ForumsGeneral Discussion
Options after a failed pouch?
JillyJilly
Tinat Hi Jan, I wish I would have searched this before, because I've recently had loop Ileostomy surgery (Sep 2016) to allow the pouch to heal, after chronic pouchitis for 3 years and it's been 8 months now and it hasn't really been healing as much as expected. My doctor hasn't prescribed any medications, except an enema that he's working on, but I'm wondering if I tried taking cipro which was my go to in the past, that would help heal things? Would you know of any other options to help heal the... [ more ]
Lynne2 Jilly, I am so sorry to hear about that you are going through. What a nightmare. You will be in extraordinary hands when you go to UCSF and I hope you leave there with a clearer idea of what your next steps will be. While there is no perfect scenario, your quality of life can and will improve. Please keep us updated on your progress. We are rooting for you! [ more ]
Mental Kase Jilly, Never Humira or Imuran. Have you been on Prednisone? I hear you. In another I post I wished a respite for you, a break from the late night laundry and washcloths. I sincerely hope your Doctor brings forth a few big guns to shut this nonsense down for a bit. Let us know the plan as it evolves. Demand relief, get relief! If the incontinence is also accompanied by run away inflammation, pouchitis, local inflammation etc... -could she call in a script and get you started on a Prednisone... [ more ]
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J-Pouch ForumsGeneral Discussion
Bottom half of J pouch is badly inflamed
MadMaxMadMax
TE Marie Hopefully the prednisone works! [ more ]
MadMax So my specialist says we will systematically try all the drugs I was originally on after I was first diagnosed with UC. He also touched on the possibility that I could have been wrongly diagnosed with UC instead of Crohns. [ more ]
MadMax Thanks for the replies. My specialist has put me on 40mg Prednisone. See if that helps. I have around 1 cm cuff left behind. But it is literally the bottom 50% of the pouch which is terribly inflamed and bloody. Horrendous. I have been on the steroids for a week and it seems to have made the bleeding worse, or more frequent thus far. Hopefully will improve. [ more ]
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J-Pouch ForumsPouchitis
Alkaline system vs acid stopping pouch infection
R RyanM
StarryNight ❤️
Scott F Prevalite is one of the artificially sweetened versions of cholestyramine, a bile acid sequestration resin. I tried it once without benefit. Some folks with terrible butt burn swear by it. I don't think it will do much for pouchitis, but it's worth a try. Make sure not to take any medication within several hours before or after Prevalite. VSL and Florastor should be just fine together. [ more ]
LauraLee Thank you so much Scott!! I appreciate your suggestions, and yes, maybe I need to combine 2 antibiotics instead of one. About my GI, he's a very nice guy, but he's not a colorectal issues expert, but Cleveland Clinic (FL) where I had my surgeries done, is almost 4 hours away from where I live. My GI tries to help me, and last time he prescribed me Prevalite, did you ever hear of it? I started it last night (it comes in packets). The other question is if you think is ok to take VSL and... [ more ]
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J-Pouch ForumsGeneral Discussion
My first day home and travel
A APHEI890
Winterberry Hello, Aphe1890. Congratulations on takedown and only needing one night in hospital! I used to have accidents during sleep, but it got better after two months or so, and it was not every night, only when I slept deeply or had a big dinner. By my second month or so, no more accidents. Always slept on a baby mattress pad or several white towels (easy to bleach). I suppose for hotel rooms you could pack small, disposable mattress liners like the liners hospitals use. Any drugstore will have... [ more ]
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J-Pouch ForumsGeneral Discussion
Taking Amoxicillin - Probiotic to restore good bacteria?
aka KNKLHEADaka KNKLHEAD
Scott F I take 250 mg of Flagyl and 500 mg of Cipro, both at bedtime. I tried the Metamucil capsules but found they didn't mix sufficiently with everything else. I now use a 50/50 mixture of Metamucil and Konsyl powders, since I find full-strength Metamucil too sweet and too full of calories. I use the directed amount of water and it works just fine - I really disagree with the "use less water" approach. My only dietary restriction is moderation of high-residue foods. I have a small salad instead of... [ more ]
helene i have same problem copra 1000 doesn't work any more i have to combine flagel also . A doctor recommend try flagel rectally hate being on drugs but i really don't have a choice.I really don't think diet helps , i saw dr Bo Shen, he believes in only in protein, very hard for me . [ more ]
TheresaInTexas Scott - Thank you so much for all of this information! I DO have more questions. 1 - What are your mg dosages for the Cipro and Flagyl? 2 - What form is your psyllium fiber in? Is it Metamucil? Have you tried various brands of the psyllium fiber and found one better than another? (this a multi-question question..) 3 - Do you restrict your diet in any way? I have trouble with raw veggies, too much sugar (natural inflammatory, of course) and I avoid whole kernel corn completely. EXCEPT, I HAVE... [ more ]
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J-Pouch ForumsGeneral Discussion
Humira and Side Effects
13 Years & Counting13 Years & Counting
AllyKat For about a week after I get migraine, sinus and ear issues as well as dizzyness. It's a love hate relationship. i had severe bone pain till I was pre treated with solumedrol. I too go to NYC Cornell GI doctor said I'm allergic, great....but im out of options and it's working great. Then I'm fine till the next infusion. In fact 2 weeks after the last I was on a cruise. Go on Facebook to the Entyvio Warriors group Most people don't have any side effects. I'm sure you will do great! [ more ]
13 Years & Counting What do you mean by "sick" after the infusion AllyKat? That was not mentioned at all when I spoke with the doctor. Meantime, my insurance denied Entivyo so it needs to be appealed. In a holding pattern for now. [ more ]
AllyKat I'm on Entyvio I had similar issues with Remicade Good luck, I get sick for 5 days after the infusion and then I'm fine, in fact my pouch has never been better. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Piriformis Syndrome and the J-Pouch
L 10larry10
Scott F I'm sorry, Larry! I'm in pretty good shape (I teach a martial art), so I wasn't sure how my method would work for you. There are plenty of videos on the web of seated approaches. [ more ]
10larry10 God knows I'm trying' to do it, but not having much luck! Thanks! [ more ]
Scott F My preferred stretch is one that I adapted from the ones I found on the web. It might not work for everyone, but I like that I can do it standing up. I hold onto something, pick up the foot on the affected side, and place the ankle just above the opposite knee. Then I squat down (one-legged) as low as I can, stretching the heck out of the piriformis and whimpering as needed. I've even done this while waiting to cross the street. [ more ]
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J-Pouch ForumsGeneral Discussion
Hot Chilies Cool Down Gut Inflammation in Mice
D d_bergman
EricaLeeJpoucher I didn't know that spicy food could do that and I love spicy foods!! I get butt burn often but it doesn't bother me, so I will keep eating spicy food. I've always ate spicy foods though, so I'm used to eating spicy foods. [ more ]
skn69 It has been well known and documented in Middle Eastern and North African countries that they have a lower incidence of certain intestinal problems thanks to their intensive use of hot peppers and spicy foods (they may have other problems linked to the same foods but I do not know which)...the capsaicin apparently fights infections in the intestinal tract and reduces inflammation. On the other hand, they seem to suffer from an inordinate amount of burning hemorrhoids...what goes in, must... [ more ]
temoty thanks [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch question
BenBBenB
EricaLeeJpoucher It definitely is better to have the surgeries if your healthy. I say this because before both surgeries I definitely wasn't healthy. I once almost passed out at my surgeon's office, luckily my mom and the nurse was there. I also haven't had much of an appetite in a while but that was a side effect of metformin. Plus I was prediabetic at the time and I had IBS so couldn't keep any food in me. I also ended up with gastroparesis which means I had to change what I eat and drink. I used to throw... [ more ]
Pilot Debby I think how you recover really depends on your health at the time of your surgeries. My colon perforated and I had been sick in the hospital for weeks so I was already very weak. It was very tough for me after the first surgery and they did not even give me a 50/50 chance of surviving the original surgery. My doctor years later told me it was so nice to see me doing so well that when he sent me home he did not think I would make it, I could not even barely walk around the house. Now here I... [ more ]
Former Member With my Stoma, yeah fizzy drinks frothed up and filled my bag quite quickly. I don't drink alcohol, so if on a night out, I tend to drink pints of Coke, yeah pints and before the J pouch; due to the fizzy drinks I'd have to change the bag twice over a 2 hour period or maybe I'll have to leave early, depending on venue, cleanliness of toilets or whether a McDonalds was close by and open. Other than contents of bag being of a pure liquid Coca-Cola type consistency and ballooning and an... [ more ]
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J-Pouch ForumsGeneral Discussion
Stomach noise
M Mad
Pilot Debby First of all you should try to eliminate foods that create a lot of gas like soda, onions, cauliflower, broccoli, beer. That helps some because it will not be as gassy. I also use simethcone which you can take after you eat that helps some to reduce the gas. Make sure you are eliminating your pouch more frequently because for me generally it does not make a lot of noise if I have emptied it. But as soon as you start to eat it will probably start up. If my stool is a little loose and I am... [ more ]
temoty i am having tons of gas noise and bloating in my stomach right now. [ more ]
CTB23 I usually just say it's my new system working and laugh it off. At this point, I don't worry much about being embarrassed. [ more ]
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J-Pouch ForumsPouchitis
Think I have chronic pouchitis; please help
T Teddy92
Pilot Debby Hi Teddy, I have had a j pouch since 1994 and I have reoccuring pouchitis and for me it is important to make sure you go to the bathroom and not try to hold your stool a long time because it makes more bacteria grow. I have found that cipro works best for me and I always have some on hand. I can take one cipro and by the morning it starts to calm it down my stools and becomes less runny. I might just take one cipro every day for a week and then stop. It can cause problems with ligaments... [ more ]
Teddy92 Thank you Jan! [ more ]
Janiep ❤️
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J-Pouch ForumsGeneral Discussion
Sinusitis and Antibiotics
SpookySpooky
Cocomama I have to respond to your sinus question. I too have serious sinus issues. I have had two sinus surgeries and still suffered terribly. (j-poucher since 2009)I have been to an allergist, Ear Nose and Throat Specialist, Immunologist, etc. I have had steroids, antibiotics, over the counter meds and used a nebulizer. I replaced my carpet with hardwood floors and bought a new mattress and an air purifier. I have no pets. I drink lots and lots of water. Still no relief from crushing headaches and... [ more ]
Mad My doctor put me on IVIG. It's a pain but I have not had sinusitis since I started. It is a once amonth imnfusion of antibodies. [ more ]
Spooky I seem to be doing well with just Flonase. Today is the first day in several weeks that I haven't had rivers of ectoplasm. LOL I'm still a bit congested and tired, but I think I've turned a corner. Happy to have potentially dodged the antibiotics. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Possible rv fistula
S sally85
sally85 Thanks so much for replying c-jay so good to hear you can live with it. I'm worried because some stool is coming through only when I have to really push to get stool to come out of the back passage, and the last few weeks I've had this intense gas pain which is unbearable and it's how I realised gas was coming from the vagina. I had a defacating pouchogram a few days ago and they told me I can't empty my pouch properly, then I have cuffitis and fissures to and I have a pouchoscopy on Friday... [ more ]
CJB Sally, I have a RV fistula for about 10 years now. I've never had a seton or attempted any type of repair on it. Mostly because repairs are difficult and success without any damage to the pouch is rare and my pouch was otherwise perfect in every way. My pouch is 21 years old this month! My fistula has never gotten worse in all these years. It is possible to live with them, although some people just can't. Got questions? Ask me anything. C-jay. [ more ]
sally85 Ummmm so there's been a change, I now have stool passing to, only when there is extreme pressure from the back and then it seems to want to come from the vagina to, it didn't pour out by any means, but when I wipes inside the vagina it was the same colour on the tissue what can I do?? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gas from vagina
S sally85
sally85 Thanks so for your reply Kara, I'm so glad your feeling better and back to work i thought I'd give an update, I had a defacating pouchogram and they found I cannot empty properly but no obvious sign of fistulas, it is there though because when I get the extreme gas in my tummy if comes from the front, today there was some smell to buy still no stool touchwood, sorry for so much info, I'm having a pouchoscopy on Friday and then talking to the consultant the following week, i don't know what... [ more ]
Kara Fred Sally, I certainly can identify with what your feelings. Setons have been helpful for many members; there are as biologics and minor surgical procedures to 'close' the fistula (a flap surgery). There are options and your GI & a colorectal surgeon can help you after they identify the fistula. In the meantime, panty liners and depends may be necessary to help with the leakage. Try not to worry, but easier said than done. Unfortunately, my fistula did not heal but my jpouch was failing too... [ more ]
sally85 Thank you Scott and Kara, I've been pretty depressed sonce there is know still coming out of he vagina, I seem to have no control and leaking from back passage also and burning, and a lot a lot a lot of gas pressure, I've never had leaking before not even straight after surgery in the hospital, and there is the same colour passing from the front, I seem to have completely loose stools now also, so I've got a fistula! I'm so depressed I can't carry on with work like this and I only just... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need to make a decision regarding surgery
L Litemyster
skn69 I have always been way too enthusiastic about surgery, jumping into it with barely a second thought...too impatient and rarely willing to wait...So thinking things through is a good thing...lists help, pros v.s. cons and what you want and expect from life post surgery or post pouch...your age and your job may play an important part in your decision-making process...I knew that I wanted to take the world by storm, travel around and feel free (that was 38 yrs ago...life was different and... [ more ]
Bobish hmm as far as I know there is no identified cause of pouchitis. People with crohns don't tend to get a jPouch because its made from small intestine which obviously is what crohns affects, but I've not heard of pouchitis occurrence being linked to UC. Moreover the 45 - 50% developing pouchitis sounds like the general odds of getting pouchitis (ie not specific to U/C). The conventional wisdom is that you cant have colitis without a colon. Perhaps your docs are interpreting 'stats'. Ie they... [ more ]
Litemyster Thanks for the replies. My surgeon is well versed in J-pouches, and is know well outside the immediate area, I'm not concerned from that perspective. More concerned about long term, with UC patients having ~45 - 50% of developing pouchitis, and the potential that can be come chronic, along with some of the other challenges of a pouch. Regarding the dysplasia, the local reading on the biopsies was a couple of areas of dysplasia. They were sent out to U of Michigan for a second opinion, that... [ more ]
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J-Pouch ForumsGeneral Discussion
Intestinal perforation
M Mad
jeane Wow. How incredibly strange. So glad you are doing good. Best of luck w recovery. [ more ]
Mad Doctor said it is unlikely to recur. I showed no symptoms. [ more ]
jeane Good luck Mad. i am very sorry to hear you had to go through this. Were you havng Crohn's symptoms before the perforation and on any meds? If not, how will you be aware if an issue like this could be brewing in the future. I admit this is pretty scary. [ more ]
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J-Pouch ForumsGeneral Discussion
Vegetables?
V *Valerie*Ann*
Scott F The intestine gets kinked when it twist or pulls around an area attached by an adhesion to the abdominal wall or another section of intestine. I suggest barrier cream *after* every BM, so there's no irritation from any seepage. [ more ]
tinyink Interesting! How does, or why does the intestine get kinked? Or, as you mentioned, does that really only happen with a narrow area? I'm going to meet with a dietician. I realize everyone is different and it's a lot of logic and trail and error, but I figured it won't hurt. absolutely! I actually use an ointment before the BM (I prefer A+D prevent) as a barrier, hypoallergenic wipes and hygienic cleansing lotion , a bidet and then after always apply Caldesene (corn starch powder with zinc... [ more ]
Scott F The blockages aren't really caused by particular food, unless you have a chronically narrowed area that tends to get backed up. Commonly the intestine gets kinked and then perfectly ordinary food becomes a problem, and folks think the food did it. Are you using a barrier cream after every BM? Most butt burn is preventable. [ more ]
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J-Pouch ForumsGeneral Discussion
Revenge of the gallbladder...
skn69skn69
skn69 I never thought of that Scott...Will ask my radiologist if he can do an ultrasound... S [ more ]
Scott F Have you been checked for remaining gall stones in the common bile duct? An ultrasound exam would show them. The likelihood of this depends on what your surgeon did, exactly. Another possibility is adhesions, which I'm guessing you'd choose to live with. I hope this disappears mysteriously! [ more ]
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J-Pouch ForumsFAP Forum
Life without a colon- consuming spicy food?
J Jennga
skn69 I have a k pouch...spicy doesn't affect me on the exit as much as you guys...my stoma gets irritated but unless I really overdo it or go on a 1-week binge (holidays) I am reasonably satisfied...That said, I have had mine for 38yrs...things used to get hot, irritated and burn...now, like the others, I find that spices go well with yogurt or milk or coconut milk...it cuts down on the burn...lemon also helps (counteracts the acidity somehow)... Give it time or use in moderation. Sharon [ more ]
Bobish Yeah 6 months from JPouch my tolerance seems to be improving too. I used to pride myself on being able to eat any food, on holidays in local restaurants i often like to ask the waiter to 'surprise me' with their favourite dish, and it not needing to be toned down for me. Since the op i struggled with anything, even if just based on curry powder, but recently I've progressed back to medium strength spice. Basically the hot Chinese dishes or the medium Indian Curry's. Something like a... [ more ]
Annikki Time...over time my tolerance has increased. Making sure you eat something that absorbs some of the spicy or balances out the spicy. I add yogurt and even cream cheese to spicy curry eaten on rice noodles. Coconut milk in Thai curry again eaten on rice noodles. Salsa mixed in cheese dip with tortillas. I have more issues with oranges and orange juice than I do with spicy. [ more ]
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J-Pouch ForumsGeneral Discussion
Update
O Onwisconsin
Bobish Actually I believe loperomide is used by drug addicts trying to shake the opiate habit. I think it helps control the addiction cravings without getting them smashed. Although I also believe some use loperomide as a base to create opiate drugs that do cross the blood brain barrier. On its own is considered safe... Venturing Off topic I know..... Just saying lol [ more ]
Jan Dollar I think there is some confusion here. Imodium (loperamide) is an opiate receptor agonist, working at the mu-opioid receptors in the gut only. It does not have analgesic or central nervous system activity, because it does not cross the blood brain barrier. Early animal studies showed some mild withdrawal symptoms after long term use, and that is why it was a controlled substance at first. It has long since been declassified, and is not addictive in humans. Abuse has only been reported with... [ more ]
Pouchomarx Immodium is an opiate? never heard that.... I know that lomotil is considered an opiate. [ more ]
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J-Pouch ForumsPouchitis
Newbie with pouchitis/bacterial overgrowth
B |Brian|
|Brian| I haven't tried cheese made from soy yet. I used to eat the lactose free Borden's cheese but it doesn't work well with the j-pouch. I have had to pretty much eliminate it from my diet. I was going through Calmoseptine really fast when I first got the J-pouch but cutting out cheese quickly stopped that. The bloating and gas I would get was pretty severe. My pants wouldn't fit and I would get this pain on my left side and it would travel up to my shoulder. Once I passed that gas I felt better. [ more ]
Winterberry Hello, Brian. Can you eat cheese made from soy? I love cheese. The world is better with melted cheese on top. For butt burn, I use plain Zincofax, the brand made for babies' diaper rash bums. That's basically what j pouchers have. I used Calmoseptine in the beginning and it helped cool the area. Now I only need Zincofax. I hope you find a good super enzyme and it helps with eating baked goods again. I eat one fresh orange a day and I noticed everything is orange coloured! [ more ]
|Brian| Hi, Winterberry, thanks for your reply. I don't think actual sugar (sucrose) really bothers my pouch. I think it's starches and complex carbohydrates that do. It seems that bacteria eat the starches and break them down in the small intestine and cause really bad bloating and gas. So eating cake/breads etc are difficult because of starches. I've tried different fruit, and the fructose has always bothered me, even when I had UC. It's been interesting because foods marked as safe on the FODMAP... [ more ]
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J-Pouch ForumsGeneral Discussion
why not Entocort for pouchitis, with cdiff history ?
PouchomarxPouchomarx
Jan Dollar Not exactly. While it is generally considered topical, with long term use there can be enough systemic absorption to become an issue. It is inaccurate to say it only is absorbed in the intestine. What is accurate is that it is poorly absorbed. Biologics are considered a safer long term option than any steroid. Jan [ more ]
Pouchomarx Shen had me on Entocort for 2 years with my first pouch when I was dealing with a sinus. he stated it was safe to use long term and I had no side effects. It is a steroid that only releases in the intestine, it is not systematic. [ more ]
Maxx My doc prescribed me Entocort to treat Pouchitis because I cannot tolerate Flagyl and Cipro doesn't seem to help. I'm holding back on Entocort because it's just another form of steroid that I wanted to stay away from. I am currently taking Xifaxan but have prescription ready for Entocort as a last resort. [ more ]
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J-Pouch ForumsGeneral Discussion
Two Lumps In My Perianal Area
CTBarristerCTBarrister
LORI726 Yay! Awesome new!! [ more ]
CTBarrister I finally had the MRI on my pelvis at Yale on May 3, 2017. It was negative for an anal fistula or abcess. So it turns out that these two lumps are just benign skin tags which are not bothering me, even though I can feel them. I think it's weird that I just noticed them appear out of nowhere. The GI doc said they could be related to the skin being irritated in the anal area, which makes sense as I only noticed them after the 2 week episode of nocturnal fecal incontinence in February. [ more ]
CTBarrister Patrizia, My GI Doctor did not mention diet at all. He thinks the treatment regimen needed to be fine tuned. We both suspect that I am lagging with the 8 week infusion schedule so my Remicade schedule was increased from every 8 weeks to every 6 weeks and he also rotated me onto old friend Xifaxin and wrote the scrip for IBS/diarrhea so that insurance company will authorize. Anyway this all seems to be a byproduct of IBD and I just have to deal with it going forward. I should stress that I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
What to expect the day(s) after self-dilating a stricture
LB Larry B
Mary O I've never bled after dilating. I am not aware of long term problems with dilating but can't say that I've really researched it. [ more ]
10larry10 No one has told me to worry about damage to the sphincter, but I live in a tiny little town with limited medical access. I do it once a week with an 18mm dilator, stretching what I believe is scar tissue. I don' get leakage, just a lot of gas after doing it. I deal with a cold-rectal surgeon, not a GI doctor, asI have been told the GI guys, except for specialized ones aren't the best source of info or treatment once you have a J-Pouch. What do you think? [ more ]
jeane Yes Mary. I agree w the bulking of the stool to help w the stricture. So glad you replied. Do you bleed when dilating and how often do you do it? Does anyone get concerned about impact on sphincter muscles or nerve damage from repeat dilation? The day of and after a dilation I sonetimes experience leaks. It's very distressing. I have read that immodium tightens the muscles over lomotil. Finally my fissures feel better as well. They are agonizingly painful when in full flare. I am adding more... [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Charcoal uses
N Nork
skn69 My dad used to burn toast black (on purpose) and give it to me to deal with diarrhea and gastro and it worked...The same idea as giving charcoal tablets. It does work...it also helps to remove liver toxicity...and lower gas. Sharon [ more ]
Nork OK thank you for your reply. [ more ]
Former Member I understand how you feel Nick. I hate living with a pouch just as much if not more as you do. Long ago I tried charcoal too and noticed no real difference after using it. I've had my miserable pouch for 29 years and have come to the conclusion there's no beating the laws of physics. Not much I can do besides watch what I eat or preferably eat less. [ more ]
See all 3 replies...
J-Pouch ForumsFAP Forum
Jpouch Cream
BorislavBorislav
Borislav thanks! [ more ]
Winterberry Hello, Borislav. That's great about chicken and potatoes. I wonder if the acid in tomatoes, and the tiny seeds, are irritating your pouch. You will know if this is true when you stop eating tomatoes for a short time, and see if you have less bowel movements in a 24 hour period. I forgot to mention that if Metamucil is not available in your country, try to get some "psyllium" which is what Metamucil is made of. It could be the ingredient in another brand name. Or try to find psyllium in raw... [ more ]
Borislav chicken with potatoes no problem i eat no problem with that [ more ]
See all 24 replies...
J-Pouch ForumsGeneral Discussion
Pouchitis Advice and Chicagoland Specialists
LionsPrideLionsPride
AllyKat This last round of pouchitis really did me in I could not eat terrible pain and so sick I lost so much weight that my surgeon gave me a temp ostomy to let things rest and to decide from there But I never got better because I got what is known as diversion colitis that is when the pouch lays empty it sometimes developes colitis or diversion pouchitis in this case I had 2 infusions and was connected right before my third I went into remission immediately the fatty acid suppositories did little... [ more ]
J.T. ALLYKAT - I noticed in your list of procedures/medications that you had a diverted ileostomy in July 2015 and had "diverted pouchitis". What is that? Also, did the fatty acid suppositories do anything? Where did you get the suppositories? Did a custom pharmacy make them? And finally, you started the Entyvio while diverted? Can you tell me more about that? Did the pouch clear up while diverted? Sounds like you remain in remission after the take-down? Thanks, Joe [ more ]
AllyKat I've been on Entyvio for a year and a half. I'm doing really well on it. Good luck. I'm not part of any study, my GI thinks out of the box. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Reaching Peak Pouch Performance - & Introduction
Yacht RockYacht Rock
temoty ❤️
lclassen For me, I mix the VSL#3 DS packet with the Metamucil, add a little ice, water and Orange Juice as my morning cocktail. I drink this on my way to work, and then eat breakfast at work. This combination of OJ with water and supplements is the only way I've been able to handle the supplements. The water helps to thin out the supplements (so they don't get too thick while I'm drinking), and the ice helps keep it cold on the drive. And the OJ just masks the taste of the other two [ more ]
AllyKat As a long time blockage suffer I would not advise using fiber. You need to drink and keep things loose and moving thru your system. I'm assuming your getting blockages due to adhesions. Have you spoken with a surgeon about removal? Is that why you mention having issues with diet? As for depression, an anti depressant and exercise. But you mention joint pain, fatigue, leakage, butt burn, sleep, pouchitis. Clear the pouchitis and that will take care of the rest. What are the Drs giving you for... [ more ]
See all 12 replies...
J-Pouch ForumsHelp! Need advice now!
Incontinence while asleep
LeannernLeannern
Winterberry Leanne, here is a link about Bio K. I'm sure it is available most everywhere. Whole Foods? https://www.biokplus.com/en_ca [ more ]
Winterberry Hi, Leanne. Did the cipro help you in the past? Or see what your doctor thinks about flagyl if your problems turn out to be pouchitis related. A endoscopy / pouchoscopy will tell. They have to look inside, perhaps take samples from your pouch lining. I drink a liquid probiotic called BIO K. It taste like yoghurt, the consistency is a bit thinner than yoghurt, and comes in flavours of blueberry, strawberry, mango, and plain. The mango flavour is rice based, not milk based so it can be for... [ more ]
Leannern Hi Winterberry, I just had a bunch of testing done when I was admitted to the hospital, I also had a contrast ct scan. I have not been scoped. I was on probiotics as well as other vitamins but stopped prior to being hospitalized with abdominal pain. I have been on cipro in the past, I could call my Dr and see if I can try it again. I will reintroduce the probiotics and hope that helps. What is the probiotic drink you mentioned? Is it better than the capsules? Thanks for responding so... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
probiotics
L LindaC
Bobish FAO boys mom, Appreciate this is from the symprove website, but the research is apparently independent from UCL London. http://www.symprove.com/biosci...ence/ucl-study?hcp=1 Its a starting point for you at least... hth [ more ]
Winterberry Hi, Boy's Mom. The liquid probiotic that I've been recommending and drinking is called "BIO K" not the other brand named bio kult. I've never heard of bio kult, but I think they are two different products. I've attached the link to the BIO K website so you can read on it. If your son is lactose intolerant as I am, BIO K makes a special flavour that is rice based, not milk based, so customers with lactose intolerance can drink it without problems. There is even a children's version. It taste... [ more ]
Aimc You can purchase both vsl and symprove on amazon. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Support group for j poucher in Maine
MG Maine Girl
temoty HI, I live in Boston and I'm seriously thinking of moving near to the Kennebunk area or even southern Maine. I've love to chat with you about what Doctors you see up there and if they're good? Thanks, Tyler [ more ]
Winterberry You're welcome! One other thought for anyone searching for support groups: Most major cities have a Crohns and Colitis Support group. Contact the one nearest you and ask if they have heard of j pouch groups. If you decide you can start your own group, meet at local library, etc., be careful initially sharing personal / health information with strangers. [ more ]
Maine Girl You are so right! Ha! Thank you so much for all the advice and inspiring words!. You should be a life coach! [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Vitamin D Deficiciency; something you should know.
RJGRJG
AllyKat They no longer recommend a level of 50-70 talk to your Drs about this. I'm under the care of my GI and functional med Dr and my bloods are checked every 6 months. 2 years ago they lowered my dose to bring my levels down [ more ]
Linguist ❤️
Linguist I have always been Vitamin D deficient unless I take supplements. The last time I got checked for Vitamin D, 25 hydroxy d3 was March 16th, 2017. The result was 21 ng/ml. The normal range the lab says is 20 - 70. I remember times I was way below 20 ng/ml. I discusses this with my new GI, but he didn't seem to care about it, although he is a renowned GI specialist here with a published scientific paper on the relationship between Vit D and IBD. Instead of getting daily Vit D supplements, I... [ more ]
See all 20 replies...
J-Pouch ForumsGeneral Discussion
can same MRI scan look at pouch and lower back issues?
PouchomarxPouchomarx
Pouchomarx So could I take my pelvic MRI to a back doctor to look for any back issues that may be going on from September? Cuz they were just looking for anything going on with the pouch like leaks or fistulas and such. Why do you think Dr Shen wants me to get another MRI if that one was clear and my symptoms haven't changed or gotten worse. ? [ more ]
skn69 I had an MRI for my back and they found something else behind the pouch...it works both ways...it sees what is there...up to the tech to read it all...and tell you what is going on. Sharon [ more ]
Brewbirds Yes a pelvic MRI covers it all. Just share your concerns and the testing will be done in one MRI. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Pain from long car rides and walking-advice needed
M MCH
Scott F It would help clarify things if you can further describe the pain. Is it relieved or changed by a bathroom trip? Does it move, or occur in a specific spot? Does it come and go, or is it constant? Under what circumstances does it go away or improve? Does it start during the car ride, or during the walk? Does it happen every time? [ more ]
Winterberry Pillow across your abdominal area, also try sitting on a semi firm cushion when you are in the car. [ more ]
13 Years & Counting I haven't experienced this, but is the seat belt cutting into your abdomen? If you're not the driver, maybe place a pillow over your abdomen when in the car. Perhaps bumpy rides are worse? I would try to take note of how/when this happens, driver vs passenger and talk with your doctor. Pain of any type is awful! [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
To opt for surgery? How does it impact your life afterwards?
LaurbbyxoLaurbbyxo
Yacht Rock My story was very near yours, minus the humira. The GI doc's only have drugs in their toolbox. And they'll keep using a combination of those tools to achieve some manner of results. Yet someday, the side effect from those drugs could do their own damage (think arthritis). Surgeons have another tool that the GI doc's don't really mention all that often....and it can improve your quality of life. Imagine your life w/o the cost of the drugs, keeping track of insurance claims, eating mostly what... [ more ]
13 Years & Counting Hi!! I had my pouch surgery in 1999 when I was 35 and drugs like Humira, Entyvio, etc. were not available. I had no issues to speak of until a few years ago & they've continued on and off. I will say my doctors (I have 2, one in my home state of NJ & one in NYC) both said that if drugs like these were readily available in '99 then there's a good chance I may have been able to avoid surgery. That being said, I was/am happy I had the J-Pouch surgery when I did. However, I also think... [ more ]
lablover My husband was sicker with the meds he was on, plus a year on steroids. He never was in remission. He made the tough decision to get the j-pouch and hasn't looked back (23 years!). That enabled us to have our son (who is 20). He is healthier and does not regret his decision. [ more ]
See all 12 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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