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J-Pouch ForumsGeneral Discussion
low potassium & the absorption of essential fluids & minerals
bowelsofhell Potassium deficiency is quite common with IBD (and with ileostomy, as well); going 20 years without encountering it, even during flareups, is impressive. Is it possible you had these deficiencies at other times in the past and either the proper tests weren't run or you weren't informed of the results? It's concerning that you were left in the dark for so many years about these basic fluid issues even as you suffered symptoms that could've been directly related to them. Do you currently have... [ more ]
Former Member Other than the rehydration solution I can't be bothered making special meals, too much hassle, I just eat anything and everything, always have done, although now I"m aware of the symptoms of low potassium and how similar such symptoms are to dehydration or lacking iron, then I'll remember to eat a banana every day I don't ever recall low potassium or folic acid during my 20 odd years with UC, even during flare ups; nor with the ileostomy. Such issues have occurred since the creation of my J... [ more ]
Winterberry During my recovery I drank a lot of homemade soup, bone broth, and miso soup. You can buy powdered miso in small packets or miso paste from any health food store or any Asian grocery store (probably less expensive). Miso has a high sodium content so it might help with any dehydration problems. Added some cooked rice and chicken, wilted spinach, and that was a good soft meal. [ more ]
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J-Pouch ForumsGeneral Discussion
Maybe odd question but, Ostomies or Stoma = Open wound???...
TE Marie There is no problem in going into water with an ostomy. I've been in the ocean with mine. The stoma is covered with the appliance's bag and the outside water doesn't get in. I've also been in hot tubs and swimming pools. I shower with mine on sometimes too. The appliance stays on and the tape around it doesn't come off either. As far as the man in the article I just wouldn't have anyone go into that water. [ more ]
CTBarrister That guy may have sustained cuts or scratches while crabbing. This kind of thing is very scary. I mostly confine my own aquatic activities to heavily chlorinated swimming pools. Although when I visited my parents at their condo in Florida in March, a day after a big storm, I was shocked to find a dead rat floating in the pool. We called the pool guy and he “shocked” the water which I think is just code for 2 or more gallons of Chlorine. Pool was closed for 24 hours. When you swim in... [ more ]
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J-Pouch ForumsHelp! Need advice now!
low potassium, totally exhausted
CTBarrister Strange, You may also want to consult with a registered dietician to see whether your diet may be a bit lacking in potassium-rich foods. After my takedown I was strongly encouraged to eat potassium rich foods, and my surgeon gave me a model diet to eat after takedown. Back in those days I was eating a lot of Gerber baby bananas which are actually pretty good! While the J Pouch makes all of susceptible to electrolyte imbalances, we can sometimes correct the situation with normal dietary... [ more ]
slouchypouch If you wanna get a high dose of potassium quickly without a prescription, just drink classic crystal lite for a few days. It's more economical than buying high-dose potassium citrate pills and will give you more medicine than you can get from food. I take mega doses of potassium for kidney stones and it's cheaper to drink cyrstal lite vs buying Urocit-K pills with something like 1080mg of potassium per pill. [ more ]
Former Member Thanks for your response CT, yeah I had to take potassium tablets during one of my UC flare ups, whilst an inpatient, big brown foul tasting balls, which made me vomit within minutes of taking them; due to the vomitting, i was prescribed liquid potassium instead but I don't remember it being administered. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Coccyx pain
lholdem Hi Sneha, I still have pain unfortunately. It's not as bad as it was during pregnancy but depending on the day it can still be an issue. Either too little or too much activity can seem to make it worse. Sitting a lot can be problematic. I think it has improved overall over time - I'm 5 years post-takedown and it doesn't usually interfere with normal happy life. Sharon, what is the name of the silicone ball you use? I use a foam roller in the area but never anything that targeted in that area. [ more ]
Sneha Hi I am 8 months post takedown and I have a similar pain since takedown. How did you finally get over it? And how many months post takedown does it get better? Thanks [ more ]
skn69 3 things help me...all mechanical. 1 I roll around on these oversized silicon tennis balls (about twice the size, they are sold in pairs and come with a bookelet to explain how to use them)...I put them under the spot that hurts and then push against them while laying on my yoga mat. Constant pushing and little pushes over time ened up cracking something down there back in and the pain finally evaporated on the spot (I just assumed that something got thrown out during one of my surgeries)... [ more ]
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J-Pouch ForumsGeneral Discussion
Tailbone Pain
Anthony Gamble This pain subsided after about 4 months. I would talk to your surgeon as at 8 months this shouldn’t be giving you issues. [ more ]
Sneha Hi Anthony I am 8 months post takedown and still have the buttocks area dull pain. Can't stand for long time. It's a dull pain. I need a coccyx cushion while sitting. Maybe it is slightly better than what it was 2-3 months post takedown. I want to know after how many months post takedown did your pain subside? Thanks [ more ]
Sneha Thanks Anthony I did visit my surgeon. He said it doesn't seem like pouchitis as there's no abdominal pain, fever or increase in stool frequency. So I guess as you said it is the pouch expanding which I suppose is a good thing [ more ]
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J-Pouch ForumsFAP Forum
Bloody Stools ??
BillV Significant blood in my stool was what led to diagnosis of FAP following a colonoscopy. Although there were hundreds of polyps, none had become malignant. While your situation is not an emergency per se, you need to have surgery before one or more of the polyps becomes malignant. Keep trying to contact your doctor and select a surgeon who has done many of the procedures that you select. [ more ]
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J-Pouch ForumsGeneral Discussion
coccyx pain
Sneha Hi I also have similar symptoms of tail bone-buttock area pain which worsens in standing or sitting for long time. How long did it take you to overcome the pain? I am 8 months post takedown. Thanks [ more ]
CandiceT thank you! [ more ]
Scott F There have been numerous posts here on tailbone pain. Doing a search and reading the lot would likely be very useful to you. Here's what I replied to one in April of last year: A couple of years ago I developed significant tailbone pain (it was worst when getting off a chair - I would make quite a face getting off the stationary bicycle). I never really did much about it, and it very slowly receded and is now essentially gone. OTOH I've been on antibiotics the whole time, more or less, so... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Tailbone pain
Sunflower70 Good point, Scott. I should have mentioned that I went to my surgeon who ordered scans and everything looked normal, so he wasn't concerned about the pain and assumed it was just part of the healing process. It's a good idea to rule out anything like an abscess or pouchitis. [ more ]
Scott F Tailbone pain is sometimes evidence of an abscess. OTOH I had it for about a year or two, never figured it out, and it disappeared on its own. It hurt worst when I was getting off a bicycle. [ more ]
Sunflower70 I had terrible tailbone pain after my takedown surgery. The pain would bring me to my knees. The pain meds I had for my recovery from surgery did not help, which made me think it was nerve pain. I went for acupuncture and that helped immediately. Over the course of a few weeks, having acupuncture about 2 or 3 times a week, the pain went away entirely. I thought I was going to lose my mind from the pain (which I had about 20 times a day) and was so grateful to find a skilled acupuncturist to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
pouchitis or dehydration or both?
JoVic My pouch function is much better today! I decided to wait on the Augmentin after that one dose. I also upped my VSL#3. No more body aches etc. what’s lingering is a dull ache in my belly actually towards the front which I think must be my bladder or prostate. It seems to far forward to be my pouch. I doubt I have a UTI. No pain or urgency to pee. I’ve been drinking a TON to rehydrate and peeing like crazy. So I wonder if I inflamed things? Could an inflamed pouch push against the bladder? [ more ]
Scott F You might just have a viral infection that will clear up on its own, whether you treat it or not. That’s actually what it sounds like to me. Of the things you changed I’d guess the psyllium probably made the biggest difference. One antibiotic dose won’t cause bacterial resistance, so it’s kind of a coin toss whether to continue the antibiotic (presuming pouchitis) or to stop it (presuming something that will clear up on its own). You had some bad side effects to two very similar antibiotics... [ more ]
JoVic And also wondering can dehydration trigger water dumps from a pouch like this and mild inflammation? [ more ]
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J-Pouch ForumsGeneral Discussion
To Scott and CTBarrister
Scott F It’s rarely a good idea to treat a lab result unless you know exactly what the lab result represents. I don’t know what symptoms you still have, and I’m *very* glad the fevers stopped. If you have no symptoms you might consider declaring victory. That’s what I would do. The sed rate (ESR) is completely nonspecific, and may not mean whatever you think it means. If you do still have symptoms that’s a different story. [ more ]
CTBarrister I don't think it's a coincidence that the ESR rate dropped when the fevers stopped. You may have had an infection that resolved and, if so, you will never get an answer. At least it all went in the right direction. [ more ]
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J-Pouch ForumsGeneral Discussion
chronic low level of inflammation
bowelsofhell I don't know if this is what alock is referring to, but my rheumatologist said that in her experience a positive rheumatoid factor can be caused by various autoimmune diseases, not just rheumatoid arthritis. When my RF turned positive a few years ago, during an IBD/arthritis flare, I asked if my diagnosis would be changed from spondylitis to RA and she said not unless more specific RA labs came back positive (they didn't). OP, do you have a rheumatologist? Many of them have enough experience... [ more ]
scallop Yes I have UC. What do you mean a false positive testing for RA? They just test for RH factor. Mine is negative. Everything they've ever tested me for is negative. [ more ]
Alock Did you have UC? I STILL have the same after 34 yrs. The doctor told me they would get a false positive testing for RA. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Seton Drain for abscess
AyrishGrl The pain is starting to get a bit better at this point, but my stomach won't settle back to normal. I am nauseous and don't have much of an appetite. Ugh. I just took my last phenergen and am waiting for the doc to call some more in. I am not seeing as much bleeding at this point, but still have a pink, yellow-y discharge. I am using 4x4 guaze pads tucked in between my cheeks right now. The dr said I could use cotton balls, but there is still too much drainage for that. Any thoughts on how... [ more ]
Brenda lynne davis Boy you have had it rough I hope you never go thru that again saying a little prayer for you and all on here Please God watch over these people they really need you and help them be strong.Hope that was ok to put on here God Bless [ more ]
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J-Pouch ForumsGeneral Discussion
Is this normal after takedown?
Sathyanarayanamoorthy Sridharan Thanks a lot. [ more ]
Former Member It only lasted a day or so whilst still in hospital and just after my takedown surgery. Its not occured for ages now, in fact, quite a few years. When It was occurring from time to time, I applied the ilex paste as described and by the time of my next BM all pain, irritation or discomfort had gone. [ more ]
Sathyanarayanamoorthy Sridharan Thanks a lot for your message. This is exactly the case now for me. Could you please let me know when this got okay, that is, how many months after the takedown? Thank you again. [ more ]
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J-Pouch ForumsK-Pouch Korner
Can a Jpouch person use ketomin for weight
Art KETO....been getting E mails from so many approaches addresses that lead to same advert endorsed by Shark Tank financiers, and just not sure of the free bottle with $29,99 s and h [ more ]
MJ0917 Do you mean Ketamine? We use that in the ER for rapid sequence intubation for respiratory distress...not sure how that's used for weight gain. [ more ]
LadyTay97 I've had limited experience with Ketamine. I was given the drug during procedures I was undergoing. So I never had the drug without being under doctor supervision and only for the limited time of the procedure. From what I know about Ketamine it is an anesthetic and a dissociative drug. And as with all drugs can have side effects including weight loss and weight gain. I'm not a doctor so getting medical advice is a great idea. Please be careful and I wish you the best. [ more ]
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J-Pouch ForumsGeneral Discussion
Keeping inflammation at bay
Diesel I have been on Manuka honey for almost a year either 10 UMF or 15 UMF, by Comvita, and it has improved my reliance on Cipro for pouchitis greatly. I take 2 spoonful's in the morning and wait for 30 minutes before I eat, and I take another 2 before bedtime. I have not had to take antibiotics in a long time. Now with that being said there are tons of Manuka honey suppliers out there as well, but you have to pay attention to the UMF (unique Manuka factor), I myself only buy Comvita, and I have... [ more ]
Jan Dollar I cannot comment on manuka honey, but cannot imagine much bang for your buck. But, no harm in it. I do understand cancer anxiety. My dad died of pancreatic cancer. Can’t blame it on drugs. My step-mom was so careful with diet, exercise, and medications it made her nuts and difficult to be around. She still wound up with lung cancer and she never smoked. So, life is risk and we all die of something. Sort of a fatalistic view, but I like to choose my risks, especially if they improve quality... [ more ]
Adam113 Thanks so much Jan. I’m just so worried about pumping medicine into my body. I get married in 3 months and lost my dad to colorectal cancer two years ago. I’m an anxious mess when it comes to my health. I am most likely going to at least try the stelara, if anything, to really knock this bout out. I have been reading up on great results with makuna honey that I plan on starting to take some with warm water every morning. Just want to start taking care of myself as the past 8 years I’ve just... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bleeding but no other symptoms
Scott F Hemorrhoids can run the gamut from going way by themselves to (in extreme cases) requiring surgery. The key recommendation is to not strain on the toilet, which is good advice for J-pouchers in general, and to make sure your stool stays soft (but not liquid). You probably want your doc to take a look, to verify the diagnosis. [ more ]
07kro If it is a hemorrhoid, will it just go away on its own with time? Is there any way to speed up the process? I've never dealt with hemorrhoids before. [ more ]
Scott F I think a hemorrhoid is pretty likely, especially if there are no other symptoms. Neither pouchitis nor cuffitis would tend to start to bleed at the end of a BM. [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch Reversal Surgery
Mysticobra Some good info here. [ more ]
JenJen I am a former j-poucher who was shocked post surgery by the many ways having a j pouch could be worse than an ileostomy or life with a wonky colon. So first, I would recommend googling something along the lines of “j pouch failure rate” or the like and making sure you are prepared. There are a lot of stats thrown around, but the latest numbers from docs I trust who see both the good and the bad is that around 50% have complications (some minor, some major) and 20% are removed (for varying... [ more ]
Bubba1028 I’m almost a year post op, 38 years young, and just got pregnant for the first time. The surgery has literally changed my life, my ability to do things I enjoy and the way I enjoy life. I have been through three obstructions, so I want to reiterate that it’s not an easy road, but in my opinion it’s worth it. Min terms of the take down surgery, idk if it will be more challenging for you since you’ve had your ostomy for longer than I did (2 months). Some times adhesions or scar tissue will be... [ more ]
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J-Pouch ForumsGeneral Discussion
Still have horrible gas
ytcrockpot Your welcome I do take extra strength gas pills, they help sometimes. Its hit or miss with food, sometimes I’ll go months with no gas, who knows what triggers it. [ more ]
Aimc Thanks YTCROCKPOT for your reply. I'm really hoping it starts to get more manageable and less painful. I would really like to go back to work sometime soon. [ more ]
ytcrockpot Hi, I’ve had my takedown 37yrs ago and still suffer with gas, sometime extreme, sometimes normal. Just seems to be the way it is with our plumbing. When it happens to me in public, most think it’s hunger pains, I just go with that. Hope it gets better for you. [ more ]
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J-Pouch ForumsGeneral Discussion
Need new doc
kta Normal for me is anywhere from 7 to 10 times a day. About 1/2 of those are not real productive, 1/2 are. To me, high frequency is pretty constant, as in 3 to 5 times an hour or more, urges where I run to the restroom and not a lot happens. I know when the opium is wearing off because I start having to live in the restroom. It is like a tablespoon or so of stool collects and my body wants to expel it ASAP. Spazms begin and sometimes I leak. Not a good thing when I am surrounded by 13 year... [ more ]
CeeeeCeeee I'm curious. What do you consider high frequency to be? What symptoms do you have when you are experiencing high frequency? [ more ]
kta I admit to being bad about sugar. Other than that, my husband and I are both foodies and eat a homemade, pretty healthy diet. There are places I will need to tweak it - sugar being the first thing to look at. I did want to respond and ask you about diet, but you told me anyway - thanks. The last few weeks have been nonstop and by the time I collapse on the couch, my mind is too exhausted to even think of checking websites. [ more ]
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J-Pouch ForumsGeneral Discussion
Check ups
chili123 Yeah, I was thinking I was due. Like u, I don't like the program though. [ more ]
tf I have pain when doing any kind of physical work or certain exercises. I have rectal bleeding and burning; unbearable at times but not always. I have anemia and take a b-12 injection. I just started a new med for IBS called Methscopolamine Brom 2.5 mg. They say I have IBS, SIOB and mechanical mobility. [ more ]
CTBarrister What other issues do you have? BTW cancer is also something you don’t want to have to go through, if you don’t have to. I speak from experience on that. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Haven’t slept properly in months😕
Recovr83 I had been some kegal exercises but I’m gonna maybe do a better routine instead an really strengthen every thing up more [ more ]
JenJen I had experiences similar to yours and second Terry's experience with pelvic floor exercises and use of codeine sulfate. With respect to the pelvic floor, that is likely more relevant if you were not using your rectum for a time -- sounds like Terry and I both came to the j-pouch after some time with an ileostomy where laxity in those muscles can become a factor in leakage. If I remember correctly, codeine is prescribed because it is better than Norco or the like as it has more of the... [ more ]
Recovr83 Thanks for all the reply’s everybody I’m definitely gonna try the Metamucil this week I guess I had the wrong idea about it. Once I start getting even 5 hours consistent sleep Il b delighted 💆🏻‍♂️😴 [ more ]
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J-Pouch ForumsHelp! Need advice now!
Just had my takedown HELP!!
Jfill21 Yeah, sounds so familiar. I finally went back to my surgeon (about 3 months post takedown) because I felt I should be farther along. She scoped me, said the pouch looked great but there was some inflammation in the anal transition zone (cuff) but that was normal. She then ordered a manometry exam. The diagnosis from that test was that my pelvic floor muscles were working against each other, rather than relaxing and “opening up.” You know, the old way we used to poop was via muscular... [ more ]
Daniel Zavalkovsky Thank you so much. Thats what i have been doing. this is usually how it goes. I sit, poop comes out literally the moment i sit because i felt the urgency, when the poop comes out the straining happens as if i had more poop to push out. I stand. I take a minute break. I sit again it repeats. I also go to the washroom a lot. I bought metamucil and immodium which thickened my stool but i still go often because i dont fully empty it every single time because a) im not sure how and b) the... [ more ]
Jfill21 Hi Daniel, I experienced the same after my takedown. For me, it felt like I had a burning rock wedged up my butt for weeks, which made tenesmus constant. After weeks of this, I thought I would go insane. The only relief was to take several sitz baths a day and a Percocet. The tenesmus/pain will eventually subside, but here's some advice that I learned the hard way: don't let the involuntary straining continue! Stand up and stop the spasm, and then walk away if nothing is coming out. [ more ]
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J-Pouch ForumsK-Pouch Korner
Updated K pouch/ BCIR sx 2018
ET_RN Dr Kiran (from the Cleveland Clinic) Herbert Irving Pavilion Room 8th Fl. 161 Fort Washington Avenue New York, NY 10032 Phone: 212.342.1155 http://asp.cumc.columbia.edu/f...118&DepAffil=Surgery Dr. Kiran is an expert in the Kpouch world. He has a team of staff in the hospital and the clinic to help teach and answer questions before and after surgery. Lots of successful Kpouches and improved quality of life for people who had failed Jpouches. [ more ]
ET_RN ❤️
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J-Pouch ForumsGeneral Discussion
Should I call Doc? Possible obstruction?
Bubba1028 Humm good advice. I’ve gone more today since lunch and I’m feeling better overall. I should say Monday I did vomit in the morning and in the evening but felt immediately better- I chalked it up to morning sickness. [ more ]
Scott F I think you’ve got it right - most likely a partial obstruction. The other possibility that needs to be considered is an ectopic (tubal) pregnancy, which is a Big Deal, so you might want to call your OB to make sure that isn’t what’s going on. If it’s an obstruction the stabbing pain is not “gas passing through” but rather bowel getting stretched as gas/liquid/solid is pressed into the obstruction without being fully able to escape. I’d encourage you to stay hydrated, but not necessarily to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Continued incontinence after 3-stage Proctocolectomy (removal of colon and rectum)
TE Marie Having blood in your stool along with an iron deficiency doesn't sound good. Do you kniw what is causing the blood? I suspect cuffitis but this is based on my own experience. That and you are having so much pain. Have you tried Super Digestive Enzymes for the gas? There are several brands that make them like Solray. Think of a super better beano. Also coukd you have abdominal adhesions contributing to your pain? I know your doctor is a j-pouch specialist but I think s/he needs to refer you... [ more ]
Doug K Hi Arthur, I am really sorry that you are going through such a horrible time. I read your story and it sounds very difficult. You mentioned that your doctor diagnosed you with pouchitis and cuffitis. Has the inflammation/ulcers gotten under control? Do you still think that you have active pouchitis? Many on this site seem to have received Cipro and Flagyl with positive responses, some folks are on those two medicines for a long period of time to combat pouchitis. Other J-Pouch folks have... [ more ]
Scott F Arthur, perhaps you could try adding some soluble fiber, like Metamucil, a couple of times daily. It won’t fix your sphincter, but it might thicken things up enough to help your sphincter deal with it. I’m not sure what’s going on with your sphincter, but it has to be working right for the J-pouch to do its job. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Experience with Wound VAC?
Savannah I used one for several months to heal an abdomen wound after my colon ruptured. It helped with the healing but the process was tiresome. Plenty of times the seal on the wound would not be perfect and then the machine would buzz. So, it was a hard few months but the wound vac allowed for healing deep in the wound. Stick with it and the negative pressure from the vac will help in your recovery. [ more ]
Mysticobra I lost mine (misplaced) when I was done with it and they tried to charge me. (I found it tucked away in the closet 9 months later. Lol) Only problem I had. Never noisy or not working Richard (sorry no help with my reply.) [ more ]
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J-Pouch ForumsPouchitis
Dehydration
J.T. Karen - i have been making my own electrolyte solution. I got the recipe from the website gotmag.com on this website there are several recipes you can follow, and they are entitled "adrenal cocktail". They work better than Gatorade. The recipe I follow is 4 oz of water, 1/2 teaspoon of cream of tartar (for potassium), 1/4 tsp sea salt, and 1/8 tsp of real food vitamin C. I just chug it because it's not a sweet trading drink, ha ha. It's kind of salty and sour, but it works. I make one in the... [ more ]
TE Marie There are hydration products available that do not contain all the sugar and food coloring that come in products like gatorade and powerade. My favorite is NUUN electrolyte tabs. They come in tab form and go into plain water. I also have clear fluid that I add to water for when I need hydration right away. It is Lytebalance electrolyte concentrate. There are other versions as well as the world health organization WHO formula powder packets. Some products are listed for helping with hangovers... [ more ]
Scott F That sounds very hard, Karenchase. Do you use a good oral rehydration solution to help absorb as much fluid as possible? The glucose in ORS seems to help pull in more water. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgeon in MO needed
Crystal Riesenberger Thank you! I am leaning toward Chicago. Dr. Strong from the Cleveland Clinic just went there. I have read great things about him. [ more ]
bowelsofhell Washington University in Saint Louis might be the best place to look. I would assume they do their share of pouch operations not only for IBD patients but also for patients at their Siteman Cancer Center who might require handsewn expertise. Sorry I can't be of more help -- my surgery was done in St. Louis a long time ago, by a now-retired pediatric surgeon. [ more ]
Scott F Crystal, as hard as it is to travel for surgery I suggest you find a surgeon who is very experienced at hand-sewn anastomoses. The travel will be a significant nuisance once, but you’ll live with your surgeon’s handiwork for the rest of your life. You might find the right person in MO, but I think it’s unlikely except maybe in St. Louis. I traveled from Kansas City to Los Angeles to have my surgery. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pressure in upper abdomen
RMiller I had a scan of my gall bladder which showed stones and sludge. I get very tired after I eat. The surgeon, however, doesn't want to take out my gall bladder until a gastro doctor sees me, which is hard to schedule. [ more ]
Scott F This could be several things. You don’t describe the pattern over the past several months, so that makes it harder to assess. You might have gall bladder issues, or you might have an obstruction that comes and goes. Have you seen a doctor? [ more ]
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J-Pouch ForumsGeneral Discussion
Elevated Sed rate, low-grade fevers, & fatigue
CTBarrister Joey, The fevers are a concern and I would ask your doctor what cancer(s) would be detected on the blood tests you had done. If you are not satisfied with the answers ask for a referral to an oncologist. FYI, I am a stage 3 thyroid cancer survivor and I have blood tests done every 6 months. What those tests specifically look for is a protein that is produced by thyroid cancer cells. If the results are less than 0.1 there is no activity to worry about. I take synthroid (thyroid hormone... [ more ]
Scott F Something immunological (autoimmune) is more likely than cancer, I think. There are lots of body part, and lots of ways they go wrong. I don’t know what blood tests were done, but I’m sure there are plenty more tests available. Since the chest discomfort isn’t new it’s less likely to be part of whatever’s going on with your flanks and fevers. [ more ]
Joey A All pain preexists the accident. I've been examined and tested by my GP and cardiologist. The only level that's been abnormal to this point is the ESR. My GP ran tons of bloodwork (6 vials) three weeks ago and all was good, ESR 32, up from 26. I read the lab report, but I don't know off the top of my head what was ruled out. I did scape my hand and knee, but both have already healed. The fever started two weeks ago. It comes and goes (mostly at night) and never goes above 99.5. Of course I'm... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Prolapse
Alock Yes i had prolapsed pouch. I was not able to empty it. I would have to sit on the potty with the sits bath with warm water to evacuate a little at time.I went for surgery to have it stapled up. Because of my asthma i had to have a spinal block. It was not a big deal as far as the procedure just embarrassing to be in the position .I would think that is how they would have to take care of your bladder. I don't think they would have to cut you. Good luck. Hope all goes well. Ps I have had my... [ more ]
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J-Pouch ForumsGeneral Discussion
How often do you go post-surgery?
Bubba1028 Yea, i agreed with the person who posted that the feeling of fullness and urgency are two different things. I often felt urgency in the beginning but it was just a fullness. I’d rush to the bathroom bc that’s what i was used to. But i think i could have probably lasted longer. As time as gone on, I’ve been able to extend my trips. And now I can easily give myself a time on how long I have until I will need the restroom. If I’m traveling in the car with my hubby, I can easily say, I will need... [ more ]
Jaypea I go every time I eat. Depending on what I have consumed the need is either very urgent or I can wait a while. Like Bobish, I eat everything except blueberries, and lots of tomatoes. I guess my total is about 6 times a day. I had my colectomy in 2012 and jpouch in 2013. I am very very happy with my gut health. [ more ]
Bobish Personally I go about 8 times a day, but... I do eat everything without restriction though, broccoli, lettuce, kale, popcorn, corn on the cob mushrooms, everything. I'm not even careful to chew properly. I don't eat hotter than a medium curry though... And I only take 2 loperomide a day. If I ate less and closer to the traditional pouch diet and took more loperomide, I could probally hot the 4 to 6 as required [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch output
Kushami That is good to hear! 3–4 BMs is great. Most people find their pouch improves/settles in for the first year (mine did), but it sounds like you are making good progress already. Hope your recovery continues. Porridge – yum! [ more ]
BenB Evening Sarah, I'm very well. Saw my surgeon today who is over the moon with my recovery and how well things are working as am I. Currently going between 3 and 4 times a day. A bowl of porridge in the morning seems to do the trick, wont go to the toilet until 6 or 7 hours later. Now looking at sorting out my diet and getting back to exercising [ more ]
Kushami Hello Ben, How are things going now? I hope the swelling has improved and you are starting to get a routine. Please post again with more questions as you recuperate. Cheers, Sarah [ more ]
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J-Pouch ForumsGeneral Discussion
Remicade
Art Grace I took remacaid for several years back 8 -10 years ago while only having severe UC.....4 hour in hospital infusions once every 2 months first 5 cc. and then with slow results helping my infections increased to 10cc. and went on for almost a year or more before I had a bad reaction while in the infusion process my GI doc said I had built up a resistance to the mouse antibody that Remacaid is made of, the hospital staff watched as I turned red and my blood pressure dropped dangerously,... [ more ]
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J-Pouch ForumsPouchitis
difficulty with bowel movements
Patricia Lenra Have had my pouch since 1986 I’m 59 yrs of age just went through a bad sinus and lung virus had to take antibiotics and Iv steroids was sick for 7 weeks now have pouchitis my first time on this site so greatful to find it. Seems evertime I take meds I get it so I avoid antibiotics and also anti inflammatory meds. I only seem to have problems with meds other wise I take nothing for my disease do try to eat healthy constant drinking water am interested in finding out from others about eating... [ more ]
Marcus1959 Hi GWEEDEE. Sounds a lot like what I have experienced... I have had pouchitis but this was something different. Turned out to me cuffitis. What worked well for me (quickly) was cortifoam. It comes in a small cylinder can a bit larger that a bic lighter. An applicator is put on top and you fill it with the foam, insert it and squirt it. It hits the cuff area and it really opened things up for me. My cuff is a bit larger than normal according to the scopes... I guess because my surgery was... [ more ]
Gweedee Just so you know you can still get c diff without your large bowel or colon. I would maybe check that option out to as it is a pretty simple test. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Colorectal surgeon
CeeeeCeeee I'm sorry you are having such a rough time. Hopefully, you will find a solution soon! I have had experience with the following two colorectal surgeons. They are both excellent, in my opinion. Daniel Ng, MD and/or Babak Rad, MD Newport Irvine Surgical Specialist Group (NISS) 510 Superior Ave., Suite 200-G Newport Beach, CA 92663 1-949-791-6767 It might take you awhile to get an appointment. They are both very busy. Explain how problematic your situation is. Also, my wonderful... [ more ]
Lesandiego Mathew Isho - San Diego. I too had emergency removal, so had to find a new doc (I didn't even know what a J-Pouch was.. ha ha). Anyway, he did step 2 and 3 for me and I have had a pretty smooth ride (at least as far as my pouch goes) for the past 6 years. [ more ]
Angitat Yes please. Send me names. I am sorry if I already sent this, but I have received quite a few pain meds due to complications so my memory is hottific Angitat [ more ]
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J-Pouch ForumsGeneral Discussion
Hirschsprungs Disease
Melinda Klar ❤️
Melinda Klar I was born with Hirschsprung's and had my "Modified" Swenson Pull-Through at age 5. About 2 years post-procedure began struggling with constipation again which became progressively worse into young adulthood until finally diagnosed with total colonic inertia. (Kept all 24 Sitzmarks at 3 weeks!). There was suspicion that my first procedure left an aganglionic segment. It was recommended that I get rid of the entire colon so I had my J-pouch at age 36. Now age 60. Except for a few bouts with... [ more ]
Jan Dollar I did a search and there have been no posts by anyone regarding Hirschsprungs since 2013. This was the only thread found. Hopefully someone with a knowledge base will come along for you. https://www.j-pouch.org/topic/...ing-for-alternatives Jan [ more ]
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J-Pouch ForumsGeneral Discussion
UC in what is left of my rectum
grandmaof1 I give my doctor won't take an appointment or respond to me messages. I just don't get it. I call and try to make appointment they ask what is wrong and send me to a nurse. It makes no since to me and I'm tired of it. Sounds like you have a plan TF. I have been looking for hours now for a new doctor. If I can't get in or get a message back then they don't have time for me. Please keep me posted. This site is so great with help. Oh and I do take Hyoscyamine I love the relief I gat from that. [ more ]
tf Seen my dr yesterday and went over my continuing issues that we are discussing here. According to my results I don't or ever had pouchitis or cuffitis. She believes what is causing my rectum issues is ibs. Also, believes its a mobility issue damage from surgery. I k my surgeon said if I ever needed surgery again I would have to go to Cleveland. I forgot to ask her about Kpouch because I don't know what that entails. I am now going to switch my probiotic to Align and my ibs med from... [ more ]
grandmaof1 JenJen. Do you have any issues with a K-pouch? Anything like having issues with a jpouch considering you still have to have a pouch for the K? Any information would be great and so helpful. I truly appreciate it. So Blessed you are feeling better. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blockage
Alaine I had surgery for a blockage June first. This problem is post-op after three and a half weeks. They had me on solid food after a week in the hospital. Maybe they should have introduced food more slowly. Part of the problem is my weight dropped to under 100 pounds in the hospital. My gastro doc is testing me for C. Diff . I’m scheduled for a Cat scan this week. [ more ]
duck11 Sorry to hear of what you are going through. Do you know with certainty it is a blockage? Did they do imaging tests in hospital? I had my first really severe blockage in October (also after decades with a good pouch). I had to eat clear fluids for weeks until I could pass food normally. It was hard energy-wise but i definitely felt better for both pain and bloating etc. not eating solid food. It took c. 5 weeks to get back to normal. It seems if you are going 20x/day, you couldn't be blocked... [ more ]
Alaine Scott, I was tested for C. diff in the hospital and that was negative. My blockage was not near my stoma site, I asked. I was in the bathroom ten times a day before I started feeling worse. I’ve needed to strain to go ever since I’ve come home from the hospital. I’ve never had pouchitis so not sure about how that feels. My pouch has been trouble free until now. Waiting to hear from my gastroenterologist and surgeon. [ more ]
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J-Pouch ForumsPouchitis
quick question
Scott F Hi, Cindy. I use VSL, but I agree that it’s expensive. I managed to get my insurance company to cover it after extensive appeals. Other folks can suggest their favorite probiotic. I’d like to suggest that you reconsider two assumptions in your post. The first is that formed stool is a necessary or even desirable goal. Most J-pouchers do best with fairly soft stool. This minimizes the amount of straining needed to empty the pouch. The second assumption is about bacteria in the pouch. Since a... [ more ]
cindy greeley Hi! First time asking question about pouchitis. In 2009, colon and rectum removed due to 30 years of chronic ulcerative colitis. Have a J pouch now which has been going relatively well, but starting to get pouchitis. Could someone please recommend a good probiotic? The doctor did talked about VSL probiotic, but my insurance will not cover it and it’s very expensive! There are so many different probiotics out there, don’t know what to get or if they even work ? Also, diet...I try to avoid... [ more ]
Bubba1028 Let us know how you make out with the results [ more ]
See all 7 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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