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J-Pouch ForumsGeneral Discussion
Eating beans with the J-Pouch?
P Pkitty
Terradon The 2 easiest ways to get the gas out of beans: 1 soak dry beans overnight and then cook them like you normally with a small piece Kombu and NO salt. This really limits the gas. Second way: Cook dry beans in an electric pressure cooker with a small piece of Kombu. Time may vary, but I use high pressure for 13-17 minutes depending ont he beans. Canned beans while fast weren't cooked in such a way to remove gas so you might need to take beano with your first bite, or add epazote to your... [ more ]
SarahXYZ lentils are *terrible* for me - too small to be chewed properly. I recently have given up beans for the most part, unless I cook them really well myself (after being canned). it's not so much of a being digested issue but just a gas issue, which, with a pouch, is all internal (you can't pass gas without being concerned of passing stool) and can be really noisy and uncomfortable. since surgery I eat more meat, but my whole diet has changed. as most have said, diet is individualized so there's... [ more ]
vanessavy I eat beans. Refried I am addicted to. I am a bean taco kind of girl. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchoscopy
ceewceew
ceew Thank you Jan. I have looked it up on a few sites and yes it does vary. [ more ]
Jan Dollar Gee, a lot depends on your coverage and what type you are having (OR setting with sedation or just unsedated scope in office setting). Plus, every facility sets its own price. Providers often will give you a "no insurance" discount. I think your first step is to decide who is doing it, where it will be done, and under what setting. Then you call and get an estimate. It could be anything from $30 (my copay) to many $1000s. Jan [ more ]
ceew I am just curious since I have to have it done this year. Just trying to plan ahead $$$$ [ more ]
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J-Pouch ForumsPouchitis
Inflammation in small intestine.
DB Dawn B
MDS I know the feeling, I took to many antibiotics, Cipro and Flagyl. Now I am on my second month of Humira. I would like to hear some success stories with anyone taking Humira. [ more ]
BlueFlame Well, I'll just add an update in case it's helpful to someone else. I was told I was having a camera endoscopy. Wrong. It was a barium small bowel serial X-ray. Anyway......Many days before the exam, I returned to my very strict NO carb NO sugar diet and added boswellia (new for me). All symptoms virtually vanished before Xray day. Five days later I went to my GI for results and got a completely clean bill of health. All symptoms were gone by then. I think the GI doctor was relieved. She... [ more ]
BlueFlame Oh my, I can NOT begin to tell you how relieved I am to come across this post. I've not been around for a few years as after I discovered pouchitis, again through this forum, I responded beautifully to antibiotic treatment and the same diet as CTBarrister. I've only needed antibiotics a few times. I went in for a check after feeling symptoms, fully expecting to walk out with the usual minor pouchitis diagnosis and an Rx for antibiotics. Nope. I could have written Dawn B's original post here. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ileus following Joint replacement surgery
Grandma JGrandma J
Grandma J You would think with all the advances in medicine, that there should be something besides waiting it out that could avoid this! [ more ]
skn69 Any surgery runs the risk of causing post op ileus, longer surgeries make the risk higher and post-op narcotics can make it worse. I had never suffered from them until 2008 (about my 30th surgery)...suddenly I was that person, the one who throws up her guts for 3 days post op and keeps walking the hallways like a robot. There is nothing that they can do to prevent them and nothing that you can do once they start other than riding them out and eventually getting the dreaded NG tube put in. [ more ]
Grandma J Please do talk to your surgeon and GI. It doesn't happen often, but apparently there is a greater risk if your bowel is compromised. (j-pouch) After joint replacement (especially for knees), oxycontin and oxycodone are used for pain. I took one oxycontin and my bowel shut down for days. The Colace is good for constipation, but as far as I know, not for ileus. I have had my j-pouch for 12 years and I still love it. [ more ]
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J-Pouch ForumsGeneral Discussion
Small Bowel Obstruction/Depression
E Erinpoo
Scott F An ileus isn't really an obstruction, though it can cause similar symptoms. An ileus is when the bowel (or a section of it) temporarily stops pushing its contents through. If you try to put food or liquid in with nowhere to go the resulting pressure is painful. My post-op ileus lasted 10 days, which was more than enough for me. [ more ]
maddie18 hello Grandma J I have heard the term ileus many times in my hospital travels :-) but never really understood it properly. Here is a definition I just looked up: noun: ileus a painful obstruction of the ileum or other part of the intestine. I have had many NG tubes put in to help the blockage and I also had surgery for this situation in 1989. I was an hour away from death and the surgeon who operated on me saved my life. So yes, I do relate very well to your battles. it takes a lot out of me... [ more ]
Grandma J Depression I understand. I have had obstructions, too, but mainly the long hospitalizations and N/G tubes were from Ileus, bowel not working at all, not obstructions. Is this the case with any of you? [ more ]
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J-Pouch ForumsGeneral Discussion
4 days to reversal....help!
GoofeegutzGoofeegutz
Goofeegutz @JordySimo the first day I did throw up when I sat up for the first time, maybe from the anesthesia. I did have nausea they gave me some zofran. After my bowels woke up the next night and while I was doing my business I threw up again, some bile. Think it was maybe mixture of all the gas and leftover bile. After that I was better. [ more ]
JordySimo Yeah that's what I did after my first op just walk a bit but luckily my bowels didn't go into shock after my second operation (somehow). So no nausea or anything? [ more ]
Goofeegutz @JordySimo all I did was walk the halls a few times throughout the day. It helped a lot with the gas bubbles too because I kept burping all day! Thanks I did get some heavy duty pads to wear at night just in case of leakage or accident. I'm just started to experience the "butt burn" ouch! I have a handheld bidet need to get better practice with it and using calmoseptine cream. [ more ]
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J-Pouch ForumsOstomy & Skin
Do any of you have dehydration/watery output problems?
TE MarieTE Marie
TE Marie Thanks Chiromancer, I had my j-pouch removed around 6 months ago. I was hoping to have it under control by now. The electrolytes are under control but I get problems with the volume of fluids in my body. I measure my fluid intake and can eat the same diet one day and all is well but the next day I feel faint, dizzy etc. I now know I am in trouble when my blood pressure drops significantly when I am standing. I check it at home when I feel this way and head to the Urgent Care Center where... [ more ]
chiromancer Try tincture of opium. I dont use or need it any more but when I had a J pouch it was the only thing that worked. I ditched the belt early on and have been using the Brava elastic barrier strips by coloplast. More secure, and an additional line of protection from leaks, getting outside the appliance. [ more ]
TE Marie It is great that you are doing so well! I've been told by docs to take 2 - 4 times a day. There are many folks that take 4 before hiking, for example. If it works don't break It �� I use Metamucil, generic, twice daily too. I no longer have a j-pouch so we are different. I think it is great you are using VSL too. I am using up some that I had on hand and stretch one packet out over a few days. I figure it won't do harm any more, and my insurance company paid a lot for it. [ more ]
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J-Pouch ForumsGeneral Discussion
Mucus Urgency
J JordySimo
JordySimo Yeah I get some days when mucus isn't a problem at all. Mainly when I'm keeping myself occupied. Is the feeling of having to pass mucus the same as having to pass a more formed stool? Because I know you've just had your takedown.... [ more ]
Goofeegutz When I had my stoma there were days I would pass mucous every time I urinated. But it would only come out when I went to restroom and then I could go a day or two with no mucous. I had told my surgeon he said it was normal. He told me I could have the sense of urgency but luckily I was always able to hold it [ more ]
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J-Pouch ForumsGeneral Discussion
Medicinal Marijuana
M maddie18
Stormwatch People who have severe pouchitis. Please try chewing your ABs up like I did. Cipro tastes absolutely terrible. Augmentin not so bad. Dr. Peter Rubin of New York, scoped me and told me that for 16 years it was the first time he saw 0 pouchitis. Probably around 95 percent better than I was. I have a life again. I'm telling you people, try a little indiga for symptoms (and other benefits I believe. I know it helps the symptoms and it very well could be contributing to a cure/improvement.), lots... [ more ]
Stormwatch The government has NO RIGHT to tell us we can't use maraujauna. [ more ]
Stormwatch I have made massive improvements by doing three things: smoking a good indica strain, taking simithicone before meals and chewing up my Cipro and Augmentin. My pouchitis is almost at non existent after suffering 16 yrs with it. Finally it's much much better. I probably use the bathroom 4 or 5 times a day. It used to be 15 or 20. I used to have huge abscesses. I was getting surgery every month on them. [ more ]
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J-Pouch ForumsGeneral Discussion
Lots of bleeding
D Denamii
Scott F The doc prescribed Cipro, which suggests that he considers pouchitis a possibility. The mesalamine (mesalazine) suggests that he also considers cuffitis a possibility. Cuffitis is like ulcerative colitis in the small rectal cuff that the J-pouch is attached to. Cuffitis is much more likely to bleed than pouchitis. Maybe you could get a copy of the doctor's record to facilitate translation? A J-pouch is not a disability. Some people with J-pouches that don't function well may be disabled, and... [ more ]
Jpouch Update from my situation. I had a scope this morning and the doctor said that there are ulcers that obviously have caused the bleeding. But he also said that he does not see it as pouchitis (at least I understood this way, we have a little bit translation problems with the doctor). He prescribed me 10 day Ciproxin and Mesalazine. This is the first time after my surgery (2003) that i have been prescribed Mesalazine. So is my colitis ulcerosa having a revenge..?? Any advice etc anyone to my... [ more ]
Scott F If it never makes it into the toilet it's most likely to be from irritated skin or minor hemorrhoids. If I have ulcers then I'm going to try to get them cleared up, if possible. I'm less worried about minor inflammation, but ulcers aren't minor, IMO. [ more ]
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J-Pouch ForumsGeneral Discussion
Concerned about blood!
kmbr108kmbr108
kmbr108 Thank you both for your replies. Wesley, I will take a look at your posts. Thanks!!! [ more ]
Scott F KMBR, my first guess would be hemorrhoids. If you can reduce straining on the toilet (e.g. with softer stool) you might see it calm down. [ more ]
Jpouch Hi, just noticed your post, you want to take a look my recent post under the thread "Lots of bleeding". I don't really have a good advice to you but my situation is even worse than yours, I have struggled with bleeding (small and massive) mostly all of the time i have had my j-pouch (since 2003). Thanks wesley [ more ]
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J-Pouch ForumsGeneral Discussion
What do you eat/drink to empty out easier, but without opening the floodgates?
I iHateColitis
skn69 All sorts of juices (prune, grape, orange...) can make your system move faster and make things a bit less dense...you just need to practice dosing it (it will not always give you the same result either...so beware to not overdo it). Hot green tea or anise tea, peppermint and some others help too. Upping your liquid intake in general, can make things run too. I would not suggest any laxatives...they can really work against you in the long-run. Sharon [ more ]
hattie I had similar problem with emptying while taking immodium tho it helped" slow the flood gates" down and then my GI switched me to sublingual Hyoscyamine Sulfate (Levsin ?) It works much better for me concerning the issues you raised with immodium. Worth a try. [ more ]
Scott F Perhaps it's pouchitis. Trying to treat only the symptoms of pouchitis will never quite get the job done. [ more ]
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J-Pouch ForumsGeneral Discussion
Finally tried Beano
I iHateColitis
Spooky Yes, what Scott said. Beano is intended to aid in the digestion of complex carbs such as those found in beans and lentils, eggplant, broccoli, cabbage, wheat, etc. However, if your gas is caused by other issues, such as lactose intolerance, sugar, etc., Beano will have no effect. I think some folks mistakenly believe that Beano is a gas eliminator - it's not, and it certainly won't eliminate gas after it has already started. Beano consists of an enzyme that helps you digest the foods it's... [ more ]
Scott F Beano works just fine on gas caused by beans, broccoli, etc., and I use it successfully for that purpose. It provides no benefit for gas caused by other factors. People who use it for things it's not intended for will inevitably be disappointed. [ more ]
Former Member Every no gas pill I ever swallowed was nothing but a waste of $$$$$$$$. I have a hard time believing Beano or Gas X works for anybody with a J Pouch. In fact I've seen nothing but negative comments about both of them here. They were just never intended for anybody who happens to be missing their colon. [ more ]
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J-Pouch ForumsGeneral Discussion
Weight loss with loop ileo, takedown next week
Matty96Matty96
CTB23 Best wishes for tomorrow, Goofeegutz! [ more ]
Goofeegutz @Matty96 I am so happy things are going well with you!! Nervous and excited for my procedure tomorrow! Praying mine seems as easy as yours! Wishing you continued success in yo u r recovery! @CTB23 happy to hear you are gaining weight!! Keep it up! �� [ more ]
CTB23 Hate this IPAD! Glad you're doing so well! I also have had a good experience so far. And just starting to gain some weight! 6 weeks out and also loving my pouch-especially not having urgency. This time last year, I was driving home from my sister's and wasn't able to make it home without having an accident. Definitely made the best decision for me! [ more ]
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J-Pouch ForumsGeneral Discussion
getting surgery in 2 weeks!!!
M Mhand
Goofeegutz @Mhand I too had UC for 20 years. I had the 2 step surgery, second part "takedown" scheduled for tomorrow as a mAtter of fact. I would say yes prepare to lose weight. I lost a lot of weight but I'm sure my case is not the norm. I went in at 125lbs (highest I had ever been due to being on steroids for 4months) came out at 112 (my normal weight varies from 112-115). I'm convinced our colon weighs quite a bit lol!! During my first two months with loop ileo I was so scared of an obstruction I... [ more ]
CTB23 I had my surgeries at 61 and hiked with my ileostomy with no problem. No depends since my days with UC. However, I have used pads at night and liners during the day for leakage. Nothing like when I had UC. I have been able to go for hours without using the bathroom and do not have the urgency I had before. Sometimes loose stools mostly due to something I ate. [ more ]
CTB23 Yes lots of people get it done in 2 steps. I was pretty sick so my surgeon opted for 3. For me, it worked out well. He also gave me a packet that explained all the steps and terms really well prior to surgery. It is called Ileoanal Resevoir Guide and was put out by The United Ostomy Association., some info may be a little different but in general it has good information. [ more ]
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J-Pouch ForumsGeneral Discussion
Half a Decade Later....
BlakeBlake
Blake Wow, can't believe how much you've been through! Keep up your positive attitude as that'll continue to be your greatest ally! Good luck in getting the retained pillcam out, hopefully sorry sooner than later. Wishing you all the best! Blake [ more ]
JoelSmith Blake, Thank you for answering my questions. I have had a really difficult time since I swallowed this pill. When they x-rayed me in 2014 the pill was seen at the old ostomy incision, that section had become distended and bottle necked, above that they made a new temporary ostomy because of a perforation I had suffered from a flex-sig. My pouch, from what my surgeon saw, was no longer functional. At the time it had been 5 years that the pill camera was swimming inside. My previous GI had... [ more ]
Blake Joelsmith, I'm sorry for my delayed reply. I had a couple difficult days of recovery from what felt like ab muscle strain or spasms near the resection site beneath the area where I had my stoma years ago. It's been excruciating. Could barely breathe or move. For those of you who haven't had to go through any stomach surgery in awhile, never take your ab muscles for granted. Prior to this surgery, it had been 10 years for me and I had forgotten how much i relied on them until they were... [ more ]
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J-Pouch ForumsGeneral Discussion
hemorrhoid
pouchingtonpouchington
pouchington Actually I think it also plays a roll in my emptying problems if that's at all possible. [ more ]
Scott F Hemorrhoids can be treated surgically (or injected with a sclerosing agent to stop the blood flow) when they are extremely bothersome, but your J-pouch surgeon might advise against it. Maybe schedule a consultation to discuss the options, risks, and how bad it really is to have misdirected poop. [ more ]
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J-Pouch ForumsGeneral Discussion
Is stress normal
S Stone
skn69 Hi Stone, FIrst off, you didn't say if being stressed out is something 'new' of if you were always this way even before UC and the pouch. If so, it is your nature and personality and other than therapy to control it (buy not necessarily resolve it) or meds to shut it up, there is not much that can be done. Next, if this thing popped up when you got sick or since the pouch then you are probably suffering from PTSD (Post Traumatic Stress Disorder) which comes into play when the human body or... [ more ]
John Curtain I had J pouch surgery in 1990. For me smoking cannabis twice a day and exercising for 30 minutes 4-5 times a week has been the constant during the last 26 years. Until 4 years ago I had a dream run. I had about 10 bms daily but the toilet visit was very brief and with very little butt burn. As I age the visits are taking much longer and the burn ranges from discomfort to pain which brings tears to the eyes at times. I still count myself very fortunate and I only hope that the cannabis acts... [ more ]
Stone My apologies I forgot to explain my situation, I've had UC and ended up with a jpouch about 7 years ago, pouchitis about once a month sometimes I'm ok for 2 months but eventually it comes back. At age 25 I got UC at 207lbs, by the time I was 32 years old and 96lbs I realized none of the doctor's medicine is working. I got a referral for UCSF and had my surgery and 2 months later a reversal. Now anytime I have pouchitis I take ciprofloxacin or Flagyl, they both help. Most days it's 12 to 16... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Trauma post blockage
R robbon
drone3 Hi Robbon, i have experienced something similar post-blockage that my system and flow is not regular. It usually takes me 1-2 weeks to get things more regular but the most important thing is to try prevent any more blockages. Advice i can give is micro manage your vegetable intake like the terminator. I can eat plenty of protein and rice with no issues but when it comes to veges/nuts/seeds/peels they are usually the ones that cause the blockage. I only eat baby spinach and tomato finely... [ more ]
Winterberry Hello, Robbon. I don't have an answer for you, but just wondered how you are doing now. I hope the pain while digesting has gone. [ more ]
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J-Pouch ForumsGeneral Discussion
Holiday insurance
K KatSydney
skn69 Hi Katrina, I have had a k pouch for 37 yrs, travel a lot and always buy travel insurance. I do not tell them that I have a pouch, (it is none of their business and they do not ask about it) I am never asked about pre-existing conditions. There are certain exclusions in case of problems. You can not claim on a medical problem if you have had recent surgery on the area...I believe that the restrictions are not to have been operated in the previous year for the problem. If you had an... [ more ]
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J-Pouch ForumsGeneral Discussion
Anybody hear about the Polyphenol diet and avoiding Lectins? Opinions please
skn69skn69
skn69 Goodness...kidney failure? Crap! Hope that things are improving (if possible) and that a solution is close...Whatever that may be. Take good care of yourself...please. For me, I am slugging it out...some good days some bad...a bad slip&fall means that all of the months of good work that I did to get my mobility back and my health on track have been for naught...limping badly, in a lot of pain but refusing pain meds (what else is new). I hope for the best and prepare for the worst! Hugs ... [ more ]
JLH from my experience w pouchitis i know that refined sugar causes inflammation--i would bleed within six hours of consuming sugar--same w simple carbs and for some strange reason shell fish. so if people are looking to cut out the worst foods i would suggest no more sugar. still avoid it and have never looked back. i'm finding contradictions on these lists. hazelnuts, for one, were good to eat on one list, so carry on. your link didn't open, although i looked at the home page and noodled... [ more ]
skn69 I just found a rather interesting and well thought out checklist...for foods that you react to. Although it is about night-fog you can use it for any sort of negative reaction that you are having. I am attaching the link http://selfhacked.com/wp-conte...05/foodChecklist.pdf Hope that this can help some people Sharon [ more ]
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J-Pouch ForumsPouchitis
Rowasa VSL#3 Enema
PouchboyPouchboy
Endi Chlorine in tap water is harmful to the probiotics. Try distilled or filtered spring water. [ more ]
Pouchboy Results, again mixed. I have stopped my routine of pepto caplets and lomotil every 6 hours, and take neither of those anymore, after a long tapering period. I changed my routine to a round of Cipro/Flagyl for a week, then a maintenance schedule of VSL#3 / Rowasa enemas. I also started taking fish oil and culturelle as part of maintenance routine. I make this last as long as possible, and I do still believe the VSL3 enemas are beneficial to this regime. Rowasa alone has always been beneficial... [ more ]
since1991 And pouchboy! �� [ more ]
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J-Pouch ForumsGeneral Discussion
Can anybody recommend a surgeon in Massachusetts?
susandsusand
susand JLH, Thanks for your honesty. I'm curious when you saw Irani..and what it was you didn't like. Susan [ more ]
JLH for what it's worth. i would never go back to irani, and did not have her do any surgery. personal opinions differ. i did like dr. nagle at bidmc, although in the end went to cleveland. dr critchlow, bidmc did my j pouch in 99 and there were problems with it that eventually lead to my needing to have it removed. so there you have it..... j [ more ]
susand Thanks Laura, She sounds great! [ more ]
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J-Pouch ForumsGeneral Discussion
How much gas is too much gas?
E ekf
kkmnocolonstillrollin Look at doing a FODMAPs elimination or SCD diet, followed closely with your GI. No beans/legumes or gluten for me ever. But found I have trouble will all grains, dairy and polyols...so I limit those. Just some thoughts. [ more ]
Scott F Some folks have had success from paying careful attention to how they chew and swallow, to avoid swallowing air. In other cases extreme gas can be from bacterial overgrowth. If that turns out to be your situation the standard treatment is a few months of an antibiotic like doxycycline. [ more ]
skn69 Not sure if there is an official answer but I would say that if it bothers you then it is too much. If it causes you undue pain, anguish or embarrassment then it is too much. How to put pay to it? Well, there is no one-fits-all solution. You can take probiotics that can be effective at controlling it. Reduce dairy products that are major gas producers, avoid starchy carbs and sugar in the same meal (avoid fruits after meals?) and do not drink juice with meals. I am a firm believer that... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch Success?
J JordySimo
Former Member Other than the peanut and banana issue I've never experienced any blockages. During my first appointment with a Stoma Nurse, she reeled off a host of everyday foods that I must not eat. I returned to eating absolutely everything I ate prior to the removal of my colon, in fact, everything my Stoma Nurse said I couldnt eat, I did and not oncebdid I have a blockage. I think the risk of blockages is maybe more apparent with a loop ileostomy, possible due to part of the small intestine being... [ more ]
JordySimo That's really good! So what actually changes? How are people prone to blockages with a stoma and not so much with a J-Pouch? [ more ]
Mysticobra I had the blockage problem with the loop. With the end I have now it may come out thick but it doesn't make me sick. Now the loop. That bugger was a pain. More trouble than what it's worth. The end everything so far comes out fine. I never expected it. I've had it ten months today and no problems so far. I had the loop two days out of the hospital and it had blocked up. My pouch. I was afraid to eat anything. Because everything bothered it or let's just say the backside. Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
Report ?
ajpopsajpops
ajpops Thanks. Jan will do. The thing is this has kind of been my norm for some time so it will be hard to tell . Maybe I'll feel like a new person [ more ]
Jan Dollar Standard treatment for cuffitis. May not be adequate for the pouchitis. If you are not seeing improvement within the week, call back and ask to add a course of Cipro or Flagyl. Jan [ more ]
ajpops Update the Doctor has put me on. Mesalamine 1000 MG suppository hope this works [ more ]
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J-Pouch ForumsHelp! Need advice now!
Diarrhea every three month
Osama madyOsama mady
skn69 Mady, I have a different idea and possibly off-the-wall but worth checking into...Your hormones. Not all periods are created equally and your hormones do not just fluctuate monthly but seasonally too. And they have a very strong influence on your pouch. The every 3 months leads me to believe that this could be the case. Does the problem occur during either ovulation or your periods? Is there a correlation? Are you suffering from lower back pain at the same time? I would get 3-4 bad... [ more ]
Jan Dollar Sounds like recurrent pouchitis to me. The longer you have your pouch, the more likely you are to have pouchitis. My chronic pouchitis started out as recurrent bouts, and over time became more chronic. Now, I never travel without bringing antibiotics with me, particularly if out of the country. Jan [ more ]
Osama mady i take Cipro and Flagyl every time i have the bout , its take usually 2 to 3 days to get out of it , but couple of time it took one week and two weeks , the blood test at hospital when i have the bout shows that i have inflammation , but after one day the blood test is normal. i tried all kind of diet , i don't eat meat , i try to eat cooked food when i can. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible food poisoning...
mamaswansmamaswans
Jan Dollar Norovirus can be caught through contaminated food, contaminated surfaces, or with contact with contagious people. It is highly contagious (it is the GI bug that sweeps through cruise ships). Low grade fever is pretty common with it. You will be contagious for a couple of days after your symptoms resolve. The good news is that it is a fast moving virus, and usually resolves within 2-4 days. I just recovered from a bout of this a week ago. I came close to needing to go to the ER for fluids. [ more ]
skn69 Like Barrister said, not much to do but stay hydrated, try to replace those mineral salts that you have lost by sipping something replenishing (coconut water or gatorade or pedialyte) and if anything happens that starts to worry you beyond the 'normal' running from both ends then head to the hospital...fast. Abnormal includes fainting, severe headache, sharp pains so strong that you are doubled over, chills, a fever above 99°, vomiting strong and uncontrollable to the point of feeling like... [ more ]
CTBarrister If it's coming out of both ends that is a good guess. If it gets any worse go to the ER. Try to stay hydrated if you can. I would eat in for a while. Food poisoning and GI disturbances like this can throw you for a loop for a week or more. Good luck. [ more ]
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J-Pouch ForumsGeneral Discussion
Scheduling takedown with a different surgeon?
boogiemomzboogiemomz
Kara Fred So happy to hear! Great news! I know, I thought the CC docs would love their patients to follow them, but I am curious as to why I haven't been able to follow up with him and his nurse. I will keep at it and thanks! [ more ]
boogiemomz Thank you, Kara! It is frustrating. Thankfully, I did persist with Dr. Remzi himself, texted him to tell him I was considering going local because of the scheduling difficulties and he responded immediately with a surgery date for me, on a Saturday no less! He seems to be really going the extra mile to accommodate his existing patients. I have two physicians in my immediate family and they both said the same thing as you, that I should stick with Dr. Remzi. So happy it looks like it's going... [ more ]
Kara Fred Hi there- I am in somewhat similar situation, but I am not waiting a surgical procedure (which is important to have someone you trust and know). I think persistence would keep paying off with NYU, meaning weekly phone calls to see if you can be scheduled? My own personal thoughts since Dr. Remzi is an excellent surgeon? I would stay with him. Once you have your final follow up from your take-down, then maybe it would be better to find someone locally. I followed Dr. Dietz to UH in Cleveland... [ more ]
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J-Pouch ForumsGeneral Discussion
Stomach overdrive
S Shock
Shock No shoulder pain issues. As far as I know I still have my gallbladder but I know they removed my appendix when they removed my colon. I have my routine physical in a little while. I'll check on blood sugar levels then. Thanks for your info!! [ more ]
skn69 My best friend and her daughter (who are perfectly healthy) get this every morning. For them it is hypoglycemia. If their blood sugar drops (and it always does by morning) they get nausea. If they do not feed their bodies every 4 hours (impossible when sleeping) they wake up running to the bathroom, transiting bile, and generally emptying everything out. Small protein meals every 4 hrs help them including a midnight snack. This could also be gallbladder. It can cause all of these symptoms. [ more ]
Shock Thank you both for your comments. I don't think it's related to hydration as it happens either way. I usually don't have a late night snack and don't take meds and usually don't have a glass of water unless I'm particularly thirsty. Most nights I void my pouch at least twice but sometimes I don't. I'll pay more attention to your fit for life comments. Over eliminating is a good way to put it as this is what it's like. I feel very naucious when this happens. The best way I've managed diahreah... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Pain and soreness in anus, waist swollen
M maryloar
maryloar Thank you for your replies. I have not had an awful lot of problems with my J pouch, but this is not fun. My waist problem started Sept 2015. I was doing a big shop and all of a sudden I started with this awful pain around the back of my waist. The pain got worse and worse and by the time I got up to the checkstand I had to ask them if I could sit down. Next thing I knew I was sitting in a chair with the paramedics taking my vitals. Fortunately I know the checker and she took my purse for... [ more ]
skn69 Hi Mary, First off I am so sorry...this is awful. Next, what do you mean by pain around the waist? Is it muscular, internal or nerve pain? The anal pain sounds like a fissure...you are right. They are awful, painful, screaming pain. Sitz baths, local anesthetics and aloe vera gel (with local anesthetic built in ) can help. The down the leg pain is another story. I am not sure if the 'waist pain' and the leg are related...often the 2 together mean sciatica (radiating pain) so you may want to... [ more ]
Jan Dollar Gee, this sounds like more than just a GI problem. It would seem that you have spinal nerve irritation/compression in addition to your anal pain. Have you had any neurological tests or evaluation by a spine specialist? Jan [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Excessive hair shedding after surgery
R Roger1066
Ljz Roger, i do believe its related to the stress of your surgery. I had hair loss- significant, about 6 months after an infusion that I expected to be the cause. Several,of my doctors assured me that it would grow back and that it was due to surgeries within previous year. My hair also changed texture but is growing back in. I used a special shampoo and other product by Davines and my hair is growing back- still not as thick, but doctors don't think it's due to product I used -that it will... [ more ]
JordySimo I didn't notice much hair loss after my first operation but roughly 2-3 months after my second operation when my j-pouch was formed and rectum was removed, I began to notice strands of my hair falling out. I was genuinely worried but I had a strong feeling it was due to the meds. I gave it a month and got my hair cut and this actually helped as it got rid of the dead ends, etc... Bear in mind, I'm only 22, (21 when I experienced this hair loss). My receding hairline has got slightly worse it... [ more ]
mgmt10 I lost a ton of hair after my surgeries. I seriously thought I would go bald. But it started to grow back after about 4 or 5 months. Many things factor into it. Mainly the anesthesia and the stress/trauma the body deals with going through a major surgery. My hair texture has changed though. It's now wavy and it always used to be straight. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
J-Pouch Sore After Blockage?
L LizzyB
skn69 So sorry Lizzy...this is not fun. Scott is right, this may be residual swelling from the blockage or a prolapse. I have had numerous blockages recently and afterwards, I feel like someone had punched me in the stomach for a week. Your insides are very delicate and may not be pleased with you right now...go ahead and see the consultant but also keep doing what you are doing...a light diet, nothing irritating and take it easy (no strenuous exercise). Do not write off pouchitis so easily...it... [ more ]
Scott F One alternative to straining would be to temporarily irrigate the pouch with a catheter. Some folks do it long term, which wouldn't suit me, but it could certainly help distinguish between a full pouch vs. one that just feels full (with the contents actually upstream). [ more ]
clz81 It can definitely take some time to recover. I've had many bouts of blockages. Some left me sore for a couple weeks. Also, it's possible that whatever is causing your blockage is still an issue, but that there's enough room for food and stool to pass. I had 8 or so adhesions removed that were all tightening around the bowel in different areas that likely caused me some partial blockage issues over a period of about a year and a half, but it was one adhesion that fully kinked the bowel that... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Need Help
W WJM
GB2014 I'm sorry to say my understanding is that if this is happening from the very beginning, the pouch is never going to work for you and you should go back to the ileostomy with which you had such a positive experience. Don't carry on as you are. The ileostomy will give you stability and you can build up from there. Best wishes. [ more ]
Sharon W I am so glad you found this group. I was on edge so many times in the last year and this group has given me so much support, suggestions and knowledge. It sounds like me in a lot of ways. I don't have much local support-hubby and kids try, but dont truly understand. I dont have a lot of close friends. My bff is in Florida and going through her own issues. My sister in law is a fulltime rver that travels 3/4 of the year. So I am alone--10 weeks post takedown. I think all the responses can... [ more ]
Winterberry Hi, Walter. I forgot to add this suggestion. In preparation for your appointment next week, how about writing a list of all the things you need to discuss with your surgeon? You will make the most of your appointment time, go through your list clearly and cover a lot of ground with him. I think Sharon is right that it sounds like PTSD. You experienced physical trauma (the colon is five feet long and your body had to adjust to that loss, and to a new plumbing system) so you grit your teeth... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Food that counteracts burning
FM Former Member
Sharon W I advise not to eat pizza or spaghetti. I avoid tomato sauce since I forgot about jpouch and had 2 pieces of pizza hut pizza. I thought I would die! Not me, not for awhile anyway. Good luck, I would love a solution though. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
probiotics
S scallop
Janiep I take VSL 3.... Prescription probiotic in powder form mixed in applesauce. Must be refrigerated and taken twice a day. It's made a huge difference ... I feel so much better!!! Good luck! [ more ]
skn69 I started taking them on the advice of my GP who was also a naturopath...I had terrible pouch pain, infections, low resistance and exhaustion...they were pharmaceutical grade and send special order in a refrigerated container. It took a 30 day supply for me to start to feel normal...then I noticed that my pouch was behaving better and I was less 'runny' and crampy...since then I have been taking 1-2 month runs of them on a 'as needed' basis. They seem to work for me...hubby takes them when... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
I now have Crohn's.... :-(
OZOZ
Edie A. You're right CTbarrister, I've learned that during my whole process through this I've been quite anxious the whole time, this time around I'm going to just take my recommended meds and see what works for me and continue living. That being said hopefully the humira treatment I start works well! Luckily we live in a day where we have many options given to us. [ more ]
CTBarrister Edie, I had similar MRI Enterography findings and similar conclusions but not understanding why you think Crohn's is a "major blow." Would you rather have treatable Crohn's or untreatable UC? The point is you have what you have and either it can be treated or not, and whatever labels we put on it isn't going to change anything. There are some people who have very treatable Crohn's and they don't have any surgery at all and there are some that are hard to treat. Don't fall into the "I have... [ more ]
Edie A. Oh that's fine, just a little rant of mine, still hope things go well for everyone here. This site is so helpful sometimes I'm surprised at all the things we all go through and how we can still go on! [ more ]
See all 19 replies...
J-Pouch ForumsK-Pouch Korner
Have an ileorectal anastomosis or K pouch, have crohns colitis
J jojohogan
skn69 So happy to hear it...congratulations! Sounds like the normal post op experience...exhausted, feel like the rug was pulled out from under you, trying to sit was a major accomplishment etc... The freedom from appliances is a wonderful feeling isn't it??? SO nice! Take it slow, be kind to your body...as I say, this is a very long road and a lifelong journey...not a sprint...so don't hurry the healing. Sharon ps...doing better...not good but better. [ more ]
jojohogan Hi Sharon, thx so much for thinking of me. Doing good 8 weeks over now. Still sore, Stoma site still not closed yet, but to go, frequency approx 8-10 daily but together usually but no pain ye ha. Had a complication in Hosp, obstruction, got sick with my own poo, didn't know a human can do such a thing but all good now. I found this op harder than the colectomy, I was wiped out, strength was gone from me, thought I went 20 rounds with Tyson. On right track, and would do it again. No Stoma, no... [ more ]
skn69 Hi Jojo, Just checking in to see how you are doing and how you are navigating your post op care...please check in and let us know. Sharon [ more ]
See all 21 replies...
J-Pouch ForumsGeneral Discussion
Butt Burn - Looking to give Ilex a go
Anthony GambleAnthony Gamble
Ljz Like Strange said, you'd think I was on commission for Ilex paste. Use it externally every night, even though not having butt burn. Preventative! During day don't use though will if going out for awhile. Have used a little internally when had cuffitis but not frequently.. Soft, high quality toilet paper a must! Metamucil type product not only firms stool but reduces acid. Have also used sqirt bottle with hot water during rough times. But the butt burn, thanks to Ilex, is the one thing I have... [ more ]
KOB Look worth considering: I was in a similar position to the point where a baby wipe touching my backside was excruciating. I actually self-diagnosed pouchitis and the GP I went to agreed. Put me on Flagyl and the problem resolved within hour, yes hours - nothing short of a miracle. So does everybody with butt burn have pouchitis, no of course not. Do some with butt burn have pouchitis, yes and there is plenty of evidence. So I take metamucil smooth twice daily. My stools art generally (for... [ more ]
nmill28 Anthony, thanks for the info and encouragement. I think I will give it a try. [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
stop loose stools
MIKEEYMIKEEY
MIKEEY Thank you so much [ more ]
Ljz I have found Walmucil (Walgreens brand- does not have Aspartane in it) helps me greatly keeping stools from being liquid and bulks them up which reduces frequency. Also, without it 3x day with meals, my output is very acidic and causes serious butt burn. I'm 2.5 years out and do need to take Lomotil to slow things and Colestipol for acid. I also find I sometimes need more carbs to bulk things up though others have eliminated those for pouchitis/gas issues. Good luck! ljz [ more ]
MIKEEY Thank you [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Anyone have ulcers at Jpouch suture line ( with pictures)
J jeane
jeane Thank you Jan. So sorry about the norovirus and I sure hope you are feeling better now. Those sure are a lot of different biologics you have been on but glad you found a combination of meds that is working This bout of pouchitis is worst ever. I'm having multiple nighttime accidents and waking and in the bathroom almost every hour. . Lomotil is not helping. I have extreme gas which I have never really had before with ppouchitis nor frank IIncinrinence like I am experiencing. I will be... [ more ]
Jan Dollar I have been on Enbrel, Humira, Simponi, Cimzia, and now Remicade with azathioprine. Before the Remicade, the biologics were for enteropathic arthritis, not pouchitis. Up until about a year or so ago, pouchitis was just acute and intermittent. Over time, it became more chronic and I was on rotating antibiotics eventually in order to function. I had ulcers at the pouch anastomosis and the efferent limb and chronic cuffitis. The main part of the pouch was fine and there were no strictures. I... [ more ]
jeane Thanks Jan and Brewbirds, Do you mind if I ask what biologics you are taking and have they healed your ulcers and controlled the pouchitis? Have you ever tried to go off them to see what happens? The consensus, up until now, was that the stricture has been causing fecal stasis, hence chronic pouchitis in my case. Prior to this scope, I have shown consistent inflammation, but only a very small ulcer along my anastomosis and in the distal pouch which is why this scope and pics really upset me. [ more ]
See all 7 replies...

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


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