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J-Pouch ForumsHelp! Need advice now!
Blockages and bleeding
M magsroo
Jan Dollar Gee, it sounds like you have an ulcer at your stoma site, and when you get obstructed, it causes inflammation and bleeding. The fact you were passing clots is a significant symptom, particularly since your stoma site is pretty far upstream. So, that indicates a very brisk bleed. You should call your primary doctor and get some blood counts done now, just to be sure you are not seriously anemic. Then, you need to be seen by your GI and have this investigated. If it was a one time deal, I... [ more ]
Spooky Since this seems to be the result of a blockage and the clots are a new symptom, I would be concerned that there might have been some local trauma to the intestinal lining which may have happened as the blockage worked through; that may need to be investigated, especially if you are bleeding a lot. If you are reluctant to go to the hospital, can you call your GI or surgeon to report the symptoms? They may be better able to advise you what to do. However, if you are continuing to bleed and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
j-pouch to end-ilio...but why not k-pouch
toobusy2cleantoobusy2clean
Jan Dollar They say it is the reservoir that causes the issues. Perhaps it has to do with fecal stasis and bacterial overgrowth. It is not so much the fact there are fistulas specifically in this instance, but the fact that it means that this is a more aggressive form of Crohn's, and a higher risk ratio for pouch failure. The whole focus in surgical treatment in Crohn's is preservation of small bowel, because you don't know how much future resection will be required, or how much small bowel function... [ more ]
Pouchomarx confused, people that have Crohns and get fistulas are not good candidates for a pouch? if they go to an end ileo, why wont a fistula still be an issue? its still intestines? why would fistulas not occur with an end ileo but would with a pouch? [ more ]
skn69 I hope that it all goes well for her and keep her distracted as much as possible...this is still a huge pyscological change to her anatomy and she will need all of the support she can get...let her closest friend(s) in and make sure that they are supportive and loving...and let her know that there are always options like Vanessa said...there is no reason to close the door until she has had a consult with another surgeon...but for now, she will need to heal...give her our address and have her... [ more ]
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J-Pouch ForumsHelp! Need advice now!
two questions: antibiotics/nausea-throw up
BM boy's mom
boy's mom Jeane: Thanks for your reply. I think my son will be on a lot of cipro too. Do you ever lessen your dosage? Or just do one day off, one day on tusing your regular dosage? Do you do that in the middle of your "two weeks on?" Just wondering about best strategy for my son. His dosage has been 250 2x a day. Also, I am not worried about a blockage. He is not in pain - just has intermittent nausea and sometimes vomiting -- so wondered if that is a sypmtom others have as well. He has had many tests... [ more ]
jeane I don't recall how long ago your son had his surgery but I have been on and off cipro ( more on than off) for ovet two years and it is still working for me. My Gi worked out a plan to pulse cipro where i sm on two weeks intwo weeks off. Sometimes I do but make it the full two weeks off due to worsening of symptoms. I also alternate days to stay at the least dose possible to keep me functioning. I have never vomited from antibiotics but augmentin gives me very bad diarrhea and upset my... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cipro and Flagyl
C Chris_JPouch
vanessavy If you are on cipro and doing bad you could have c.diff. I would get stool tested to rule that out. I was told I had pouchitis when I never EVER had it. I was on antibiotics that caused c.diff to form. I also got diagnosed with SIBO so had to change up my diet. Took a good 4 months to be normal but I am ok now. [ more ]
CTBarrister I have rotated antibiotics for 18 years. I tolerate all of the antibiotics well and if you rotate 3 or 4 antibiotics aggressively every week or two, no resistance will build up. You have to be cognizant of what the antibiotic families are and when you rotate antibiotics, do not use two in sequence that are in the same family. For example, you do not rotate from cipro to levacquin as they are in the same family which is called fluoroquinolone. Rotating directly from one antibiotic family... [ more ]
Scott F You have a few options. You may choose (or need) to stay on antibiotics. Some folks stay on one for quite a while, others rotate them every few weeks. Since yours seems to be losing its effectiveness, rotating would be a good idea. You may want to add a substantial probiotic, like VSL #3 DS, which seems to keep pouchitis at bay for some of us. And you should at least try substantially reducing carbs for a while. It's a big change, but it might also have a big impact. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Medication with Alcohol?
C Chris_JPouch
rachelraven Flagyl makes me incredibly ill just on its own... SO intolerant of it, I list it as an allergy. Can't even imagine drinking while taking it, in my case. [ more ]
phonix2g Why take the risks? I don't see how drinking could be that important to have serious side effects happen to you. Every single time I was prescribed Flagyl in my UC days my pharmacist always warn me not to drink while taking the medicine due to serious side effects leading up to death. Yeah it may not affect others but I wouldn't risk it. I know you would like to party like the rest of them and not be left out but you might be left out in the end as the one with a terrible sickness. Be... [ more ]
Pouchomarx I drank on Flagyl in my UC days and started vomiting horribly [ more ]
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J-Pouch ForumsHelp! Need advice now!
post take down and work
DW debs w
phonix2g My takedown was March 23rd and hoping to get back Sept 23rd. I had a rough go at surgery plagued with infection and months of extreme anemia. Felt like anything that could happen did. I'm not 100% yet and hoping with my workplace arrangement rep to be able to start of 4 days at 4 hours. Luckily my company has short term and long term disability benefits and are very willing to work with me to try and to get me back to work in my same position. I'm blessed to have a job that has great... [ more ]
kta I had a rough go with being very sick before surgery, then needed 4 surgeries total with a long month in there dealing with internal infection. That said, I was very weak by takedown. I went back to work teaching full time in 6 weeks. It was too soon. I could have done 1/2 time, but full time was an overload. It was a rough year because I healed a lot slower due to total physical and intellectual exhaustion. [ more ]
debs w Thanks everyone, that is really encouraging to know this. 2 weeks - wow!!..If the take down goes ahead for me, I will keep a food diary and see how the output goes. Is it better to eat - say 6 small meals, or keep to 3 meals - does it make any difference to start with - e.g.. constant out put? [ more ]
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J-Pouch ForumsHelp! Need advice now!
chronic insomnia and maybe reversal next week
DW debs w
debs w Thanks Steph, I am in Yorkshire..my take down hasn't been done, sp v upset to say the least. Will do new post about it. Debx [ more ]
Stephaniesays91 I'm 5 weeks post op now and have never been a great sleeper, but I must admit having the pouch hasn't helped (I'm still very early stages though). The first 3/4 weeks for me were a struggle but I'm starting to get the hang of it now! I'd say I typically get up 2/3 times a night to go to the toilet but I've never had any problems leaking ect! Where in the uk are you from? My stoma nurse kept me away from fruit and veggies in hospital but wanted me to start introducing them slowly but surely a... [ more ]
debs w Thanks for the advise Scott, I love my food as well! Will see, first if the surgeon does it and then take it from there. Deb [ more ]
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J-Pouch ForumsHelp! Need advice now!
What should I do?
G Ginabello
Ginabello Hi TE.. I went to see him on Monday..The lump had opened up by then and he said it was an ulcer and it looked fine..He said the draining seton was ok to.I do wonder if it was sitting for almost 10 hours an my butt?.I don't know much about ulcers outside the rectum..I see him Sept 5th again..I am still taking my 3 to 4 baths a day and feel better today..I do wonder if I have crohn's instead of colitis? [ more ]
TE Marie I think you should call and ask your doctor what to do. S/he might want to see you sooner. They keep appointments open for acute problems that need to be seen ASAP. I hope all works out fine. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Motility issues with oxycodone
SavannahSavannah
TE Marie I'd like to suggest drinking apple, white grape or prune juice. There are also magnesium supplements you can use and find them in the vitamin section at the drug store. [ more ]
Jan Dollar Absolutely. I take Norco for chronic pain. I was taking just one a day for a long time, but my rheumy recommended a slight increase for my daily dosing. I added only 1/2 tablet, and have since had to reduce my Imodium use by 1/2-3/4. So, yes, there is a definite correlation. And sure, as your pouch matures, it becomes more efficient at extracting water. If this is becoming a big problem, you may have to add daily non stimulating laxative to keep things moving, like Milk of Magnesia or... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Had my scope today, but
N Nroley
Nroley The scope was just to check out my pouch really, it hadn't been scoped in a long time and I've been having alot of stomach problems and inflammation in my small intestine. Knowing I have a stricture makes me realize I have had symptoms, but I didn't even know what a stricture was so I didn't make the connection. They are going to help me get into a surgeon I believe, my current dr. I a GI, but not a surgeon. He said he used the smallest scope they had he wasn't comfortable pushing it b/c he... [ more ]
rachelraven Yep, it can happen. Twenty two years into it, I developed narrowing. Worst thing EVER... could barely pass gas, jut awful. My doc dilates under anesthesia, used a proctoscope. Thankfully, I remember nothing. [ more ]
jeane I am sorry to hear about your situation. I am not sure who did your scope, but a good GI or colorectal surgeon may be able to scope you with a smaller scope as Jan indicated. I have a stricture and my GI also uses very small scope. Typically what they try to do is stretch outlet where the stricture is either manually with their finger or if stubborn they may try a balloon dilation. Depending on the severity of it, it could take more than one dilation to help break it up. Did you have... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can a GP do a rectal exam to check for a stricture?
SavannahSavannah
Pouch4Wf My wife was in the hospital a few weeks ago. An "on-call" colorectal surgeon did an exam and determined that there was no stricture. Our experienced surgeon came in the next day and found an "extreme" stricture during endoscopy. No clue how the first surgeon missed it. I think the anastomosis (outlet) site is far enough in that it can be missed by someone who is really not experienced with the anatomy of the J-Pouch. [ more ]
Savannah Thank you so much everyone. You all said better to have my surgeon do the dilation if needed. This means I may want to have sedation for the exam which is to include a flex sig. I am kind of a soldier but I really don't want to experience any more pain in my anus/intestinal region. Everyone's knowledge, experience and authenticity on this site is so helpful. To those who regularly post and manage the forums a big round of claps and snaps. I have learned more here then anywhere else and the... [ more ]
mgmt10 I won't let anyone but my surgeon touch my butt! I had a stricture too and my surgeon took care of me. I wouldn't chance it. Let your surgeon do it. [ more ]
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J-Pouch ForumsHelp! Need advice now!
VSL#3??
SavannahSavannah
Dort My doctor has me taking the double strength version. I take 2 packets twice a day. I believe it has helped me. I mix the powder with applesauce. It needs to be refrigerated. My insurance paid for a three month supply but I have a feeling I may not get them to cover the cost again. It is very pricy. [ more ]
lablover My husband has done pretty well with VSL3. It is pricey ($49). [ more ]
Jan Dollar What sets VSL#3 apart from most of the others is that they actually did some studies with j-pouches, and that is a rare thing. But, even with that, I would not say that it is conclusively superior to any other probiotic. What the few, small studes showed was that if you take it after surgery, it delayed the first instance of pouchitis. http://www.ncbi.nlm.nih.gov/pubmed/16903771 If taken after treatment for pouchitis with antibiotics, it prolonged the period of remission for a small number... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Has anyone ever been prescribed Omeprazole?
LS Lively Sloth
skn69 My doctor prescribes it every time that he puts me on high doses of anti-inflammatories so that they do not burn out my tummy...usually a 2 week run...the only side effect I have noticed is that I might not be digesting as well as I usually do when I am on them... Sharon [ more ]
Goody2shoes I have been taking omeprazole for a few years, it was first prescribed because I had a persistant cough (lasting more than a year) - but I do also have heartburn - and it helps with both. My sister has also been prescribed same for a persistant cough - but she won't take it !! The cough has something to do with digestion and heartburn. You should try it atleast. [ more ]
Jan Dollar It is worth a try. It is the generic form of Prilosec, which is available over the counter. Pretty safe stuff, particularly in the short term. The advantage is that if it works, it is an easy fix. If not, then you can cross it off your list, and so can your doctor. If it makes it worse, then that is more evidence that this is SIBO, because reduced stomach acid is a causative factor. If you refuse to try it, then you can earn yourself a reputation for being a difficult patient (complaining... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Red rash around old stoma site
P Pluot
Pluot Thanks Jan! [ more ]
Jan Dollar Should be OK. That might tell you if you are thinking in the right direction or not. Could even be a reaction the adhesive in the steri-strips, but you'd probably be able to tell if it was. Are you keeping it covered, or is it open to air? If it is covered, then fungal infection makes sense. Of course, probably would not hurt to tell your surgeon about your observations and how you intend to deal with it. He may say "fine, go ahead," or "NO, I want to see this!" Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
So confused
N Nroley
Jan Dollar This is why I suggest you ask them to talk to the doctor directly and get instructions from HIM, not the assistant, not the nurse, but the doctor who will be performing the scope. HE is the one who knows what he will be doing and what prep he needs for it. You are not being a difficult patient by finding out what is going on. It is one thing for them to tell you to just do something, but they should also be able to tell you WHY! To us, these procedures are common, but they really are not. [ more ]
CTBarrister Any time they see inflammation in the pouch they will look above the pouch to see what is going on. It's arguably malpractice if this is not done. Unfortunately the traditional scope that is used only enables a peek into the neoterminal ileum, and not the entire ileum. I think they are doing a different scope to go higher up, but what they should be doing on you is an MRI Enterography or a camera endoscopy. Those procedures enable visualization of the entire ileum. There is no scope that... [ more ]
Nroley First I talked to a medical assistant, then she told me I needed to talk to the nurse, that's who told me to do the whole prep. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Slow bowels
SavannahSavannah
rachelraven Grape juice works for me sometimes, too. [ more ]
vanessavy I use MOM, Lactulose solution usp (get from my GI) and a lot of red grape juice. The enzyme in the red grape makes pouches runny. I have to be runny with the type of pouch I have so I usually drink grape and orange juice mixed together. Moves things along. If I am really blocked up and don't want MOM I drink iced coffee real fast. [ more ]
Savannah Thanks for the advice about MOM. Others seem to like this too so I will try it if I need it [ more ]
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J-Pouch ForumsHelp! Need advice now!
Watery, green stool - yucksorry :(
SallyJPouchSallyJPouch
rachelraven Fruity Pebbles cereal would turn my poo blazingly NEON green. Food color can absolutely affect stool color. [ more ]
Jan Dollar You have to remember that your stool is not clear to begin with, so any color additives will be combined with the color of the bile. Often it can be on the yellowish side, so adding blue makes green. The main thing is that a symptom like stool color is only significant if it is sustained, and if there are other symptoms associated with it. Jan [ more ]
Spooky rjmlakota, You'd be surprised what certain foods do to the stool. It could have been the blue chips. I've had green coloured stool from blue Gatorade (back when I used to drink it; I don't drink sports drinks these days due to all the other crap in them). I've also had greenish stool from black/purple wine gums, blueberries and blackberries. That's why it's always good to track back what you eat first before panicking - though I know it's hard! The first time I had ketchup when I had my... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gas with the pouch and what helps?
SavannahSavannah
Savannah Thanks so much to everyone for the advice about SIBO and for the suggestion to try a FODMAP diet. I don't know if I can stick with such a diet as it seems so restrictive but I can be aware of low and high FODMAP foods and try to avoid as many of the highs as possible (for me). I do think I eat too much sugar. I feel deprived of the various fruits and veggies I love and then eat dark chocolate and chips which is not very healthy. At least I eat no fast food, red meat, fried foods, pastries... [ more ]
vanessavy Cut the bread out, carbs give gas. [ more ]
liz11 If you have SIBO, what helps is reducing the stuff that fuels the bad bacteria in your gut, and that is not just sugar. If you have it bad, it is treated with antibiotics along with strict dietary modifications. What has worked for me is xifaxan AND a strict low FODMAP diet. Also with you saying you are underweight.. is another SIBOish sign. What happens when SIBO is bad is that the bad bacteria take over and prevent absorption of proper nutrition. There is a breath test for SIBO, but it... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hello - Help
HAPHAP
Scott F Some people seem to be having decent results with very low carb diets. I haven't had sufficient motivation to try it. If you do try it, I'd recommend using a probiotic like VSL, and giving it some time to work (i.e. change the diet well before stopping the antibiotics). [ more ]
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J-Pouch ForumsHelp! Need advice now!
Support to vary my diet
SavannahSavannah
Nroley Ah, I hate that feeling of being too afraid to eat something you know you love. I would introduce one new food at a time and eat only a few bites of the new food, then if there is no problem slowly increase how much each time. Good luck [ more ]
Lesandiego Keep a food diary. You will soon learn what gives you issues. I am not a fruit lover, but I eat grapes and bananas with no issues. I love salad (lettuce, cucumbers, tomatoes) and have never had an issue with blockage, not even when I had my ileostomy. What I did learn from my food diary was that dairy will cause me diarrhea. I only kept a food diary for the first 2 months and tried eating pretty much everything I love during that period of time. Having dairy issues does not stop me from... [ more ]
Savannah Thankyou so much for the support. I am going to do just as you say. Trying more things in moderation. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abdominal Pain 7 weeks post take down
M mehoffma
phonix2g Yeah I also think its normal to have abdominal pain. Just remember everything inside there has been readjusted so things are in places that they were never intended to be. I am 5 months post takedown and still have a significant amount of abdominal and rectum pain but realize that all comes with the territory. I do believe in pain medicine if used correctly because less of a chance of stomach ulcers but if abused more of a chance of liver problems. I would definitely bring it to your Drs... [ more ]
beucfree I think some pain is normal. May be not constant pain, but if it comes in waves, then it is probably normal. I would call surgeon to be safe. If possible, stay away from Advil. Have your surgeon prescribe a different pain killer. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Same pain as before surgery?
B beckysmom
beckysmom Yes Jan, that is what he had said about the nerves and things settling down. I didn't remember that part until you said it. My daughter did ask could it be a permanent thing because of the length of time it was occurring and he said he didn't think that would be the case, things just need time to heal. Thank you Paulette. Hope she will feel better soon, you also. [ more ]
TE Marie I hope Becky gets to feeling better soon and her nightmare can go away soon. [ more ]
Jan Dollar That is a very good factoid that she did not have much in the way of adhesions found. That is because people tend to be pretty consistent in that regard. Basically, once you are known to be a big adhesion former, you'll remain one. Of course, if there is infection in there from peritonitis or chemical irritation (occasionally happens with Seprafilm), that would make anyone develop a large number of adhesions. So, yeah, this could just be one of those "pain memory" type of things, where the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cured of UC but now Crohn's?!
C CedarsFam
GinLyn Yes, if you haven't been checked for C.diff, you should be. It is a very simple test of a stool sample. It is nasty and painful, but also entirely treatable. I've had it twice and can attest that many of the symptoms can mimic Crohn's, AND that proper treatment works wonders. Beterschap, Gin [ more ]
Very-Unique I have ulcers above my pouch and the GI and surgeon are saying it could possibly be irritation due to backwash from the pouch or Crohns. Either way they don't seem to be too worried. [ more ]
vanessavy Cedar Farms have you been tested for C.diff? I ask because my friend has UC and they swore she had Chron's with ulcers. turned out she had nasty C.dff. Simple stool test will tell.. I had c.diff and a biopsy didn't show it but a stool test did. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stricture Dialation Recovery
P Pouch4Wf
Pixie I had several dilations done at the hospital and then I did self-dilations. The recovery after the procedure is basically nil. I think pressure when emptying is normal to a point. I felt pressure in my pouch area for probably a year or so. I think I was just hyper-aware of all sensations down there. I had immediate relief after dilations. However, my stricture would start to tighten up again within 2 wks and I would notice difficulty emptying again. My stricture was quite low down so it was... [ more ]
clouseau I have had 3 balloon dilitations by Dr Shen and there was no recovery time, the effects were instantaneous, I need to do it every 3 months because I get the strictures back. I go to the bathroom about 15 X's a day when things are good. [ more ]
jeane I have a pouch outlet stricture that has been dilated at least four times. Unfortunately, mine is chronic and is maintained by repeat dilations. I'm not sure if the surgeon did a balloon dilation or finger dilation on your wife. As of present, mone have all been finger dilations. However at my next gi visit we will discuss a balloon dilation Your wife can very well do fine from here on in. I think it is important to find out if she has any inflammation at the connection. I would think not as... [ more ]
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J-Pouch ForumsHelp! Need advice now!
PLEASE: Anyone ever feel like me?
B Bergie77
vanessavy It is common to have the fluid. How much is there? I always have fluid about 4cc worth in one spot and 2-3cc worth in another. If you have an abscess then that is a different story. Cipro doesn't help nerve pain that is why I mentioned a placebo effect. I have had that with some meds that really didn't help me, my brain told me. They were making what I had (c.diff) actually worse but I swore they helped. Nerves get damaged in surgery so it sounded like a nerve issue to me. See a doctor... [ more ]
Solomin Bergie, Have you tried Bentylol? It is an anti-spasmatic drug and might help you. With the problems that you are experiencing, I would recommend getting a second opinion. Just make certain that you have as many test results as possible available if you make arrangements to see another doctor. Good luck and feel free to reach out to me anytime. Thanks, Solomin [ more ]
Bergie77 Vanessa: MRI of pelvis showed fluid adjacent to j pouch + presacral edema @ 1 o'clock position exactly where my pain is localized. Does that help you in any way for treatment for me? Cipro wouldnt help nerve pain would it? Thanks Vanessa im so desperate been on Cipro on/off for almost 9 months. [ more ]
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J-Pouch ForumsHelp! Need advice now!
GALL BLADDER and J POUCH
Pilot DebbyPilot Debby
vanessavy I had my gallbladder removed. Doesn't make a difference on my bowel movments with my pouch. Not sure what to compare it to since I had it removed with my colon and anus. I know I have read that people almost think they are having a heart attack with a bum gallbladder. I never experienced this and mine was bad. The pain I had, only way I could describe it to doctors, was that someone was ripping my bellybutton inwards. It was intense pain and that nerve in the belly button can really mess... [ more ]
Mahshelley I have a j pouch and had my gallbladder removed. You may feel pain in your mid to upper right abdomen. Mine was there and almost in my back. They can do an ultra sound to see if its gallstones. If its bad enough, removal isn't a bad option. Some people notice bowel changes with the gallbladder removed, but I have enough diarrhea as it is, guess we j pouchers don't notice too much change. Good luck! [ more ]
Donna H I can certainly relate to the back, shoulder area, and chest pain. I experienced these symptoms, very severe, after i was in bed for a couple of hours. I raised my bed, another pillow, watched what I ate and nothing would help. I had about 10 excruciating episodes in a couple of months (about 5 hours each time), going to emergency once. They gave me a cocktail and the pain went away within a few minutes. It does mimic a heart attack but thank God it wasn't. I eventually got my gall bladder... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-POUCH SURGERY
A abillusmc
ljk Thanks so much Marianne, I am praying that it all goes well too! [ more ]
mgmt10 Hi ljk, The typical hospital stay for takedown is 4 or 5 days. I was in the OR for 30 minutes and when I woke up I had minimal pain. My bowels took about 24 hours to wake up so don't expect anything right away. My stoma was closed up too and healed beautifully. Go slow with food at first. You will do great! Best wishes for a speedy recovery! [ more ]
ljk Hi Everyone, I am just 9 days away from having the final step, for the j-pouch surgery. I am kinda nervous about it, not knowing what to expect. How long is the hospital stay? What is it like when you wake up? Will you have to use the restroom right away? I know she will be closing my stoma and how akward it will be not seeing it anymore, its quite overwhelming when I think about it! Its been so long living with an illeostomy, that I never got used to. I pray and hope this will be smooth... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Swollen spot near anus
E EdwardK
ljk Thanks for the advice Rachel, I see her 8/8 and I will mention it to her. It does seem a little better though. [ more ]
rachelraven That's how my issues started, a sore bump about the size of my pinky nail, just thought it was an irritation at first, then found it when wiping. It got to thumbnail size, then hot sitz baths let it burst nd drain. Unfortunately, it turned into a fistula, and I had to have a seton placed. Show it to your surgeon. That's my best advice to you. They need to be aware of it. If it gets worse, ask for a pelvic MRI, especially if it starts a "fill, drain, burst" fistula cycle. [ more ]
ljk This is pry TMI too. I on the second step of the j-pouch surgery. I am still having quite a bit of leakage( mostly at night. Recently I developed a pimple of some sort. It stings badly especially if I touch it. The area of this pimple is just by my anus. Anything, I should be concerned about? Thanks a bunch for the response!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain spasm pressure in j pouch
B Bergie77
grandmaof1 I had that and the doctor put me on Levisin sl. You put it under your tongue. Works great for me. I can take one or two. Depends on how I feel. Just a thought. Maybe you need a prescription to get you by. I am getting away from them. Slowly but I am. I hope this may help you. [ more ]
phonix2g When I have the feeling of bad pressure its usually the result of a lot of gas build up that's how I actually determine whether I'm going to take the chance and try to pass gas before I run to the toilet. I realized I can only pas gas if I'm laying on my right side or laying on my back with my knees up so it might take some experimenting. [ more ]
Lesandiego Do your "waves" feel like your pouch is in an elevator ride and the bottom just dropped out and it is in a "free fall", so you tighten and squeeze your sphincter to keep it all in? That funny sinking feeling is soooo hard to describe, but that is the best that I can do. [ more ]
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J-Pouch ForumsHelp! Need advice now!
So sore down there all day
C CaryO
ljk Cary O You are in my prayers. You must be exhausted. [ more ]
ljk Any way to prevent this from happening? Just wondering! Thank you I will pray that this pain goes away!! [ more ]
NJK 2 Sitz baths a day. the creams really help. valium is good. a heating pad is a must. Also consider you might have diversion pouchitis or cuffitis. I had all 3. [ more ]
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J-Pouch ForumsHelp! Need advice now!
second day after reversal, expelled some gas urinating
I Ikh
Ikh now it's becoming more frequent... This is a nightmare it's a rare condition, the surgeon told me to wait this to settle but i'm so scared [ more ]
Ikh doctor said he will put me on anthibiotics and will send me home, to see if the problem persists. He also let me understand that if it were really a fistula it will be almost untreatable and will probably lead to pouch excision and permanent ileo... Ok, i'm speculating but i'm beginning to feel desperate, now that everything seemed ok, this problem... I read that infection caused pneumaturia is very rare so i don't know what to think... Something is saying to me, there's a small fistula,... [ more ]
Ikh yes Jan I'm trying to beg the fistula idea but you know when you thought everything is ending it's a bit alarming, luckily they still haven't examined the urinary tract, nor gave me antibiotics... So your hypothesis sounds logical. Morning I went too pee and still had a dark urine, but the color appears not alarming, the odor seems just an urine odor, as i expelling liquid stool color and odor poo from the pouch i suppose it should be much more evident if it were a fistula, not only this... [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
this itching is driving me crazy!
crick05crick05
Bob Midden I've had lot's of problem with this itching and burning and now believe that it is due to yeast. But it doesn't appear to be Saccharomyces yeast that causes my problem. I've discovered that Torula yeast is used as a food additive. It can be hydrolyzed to release relatively large amounts of glutamine. Glutamine is essentially MSG (monosodium glutamate) and a flavor enhancer. Food manufacturers use hydrolyzed Torula yeast or other forms of Torula yeast as a flavor enhancer in a large variety... [ more ]
Scott F A common brand name for witch hazel wipes is "Tucks." [ more ]
Rebe0505 i had itching from front to back and found something online it said use moisture wipes with with hazel which i got in rite aid..i could not believe after so long it works..look in hemmroid section of store i also got hemmroidal ointment for in and outside incase itch inside..both od these have done the trick rebe [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Pouch waking up after surgery for obstruction
SG Susan Gilbert
skn69 Keep off of all solids until your gut green lights you and even then take it really slow...I was put on the new protocol post k pouch surgery...3 days I.V., 1 day clear fluids, 2 days full fluids and on the 7th day they fed me...I was thrilled, my pouch behaved, they discharged me...youppii! (it was Thursday)...the weekend went well, I ate reasonably (right!) and then on Mon, on the way back from my 1st post op appt I ate a bagel. 3hrs later I thought that a linebacker had tackled me. [ more ]
Markg Hi Susan, I just read your post and realy feel for you! I had my takedown surgery on 8th July and was sent home two days later, feeling sore but good. Then followed the most agonising two days of pain I have experienced since first being diagnosed with UC in 2011. I was recalled to hospital with severe abdominal spasms/cramps and was told I had an Ileus. I was then not fed for 6 days - free fluids only and then fed intravoenously for 4 days to allow my bowel to rest completely. Started... [ more ]
Susan Gilbert You are all great. I don't have an appetite but was eating a few bites of mashed potato. Asked a lot more ion hospital when on narcotics but of course that slows things down. It has Ben ten days and I am miserable yyou have all comforted me in my dark hour. I feel so blocked [ more ]
See all 12 replies...
J-Pouch ForumsHelp! Need advice now!
bio feedback physical therapist for pelvic disfunction
BM boy's mom
beckysmom I think the NY hospital that both our kids have been at can recommend someone for your son. My daughter had her biofeedback in Chicago when she was attending college but I heard her NY surgeon say there are people in NY that do it. Hope it helps. [ more ]
suebear I had a terrific rectal PT who worked out of USC Norris Hospital in LA. She left work to give birth to triplets; I'm not sure if she has returned to work. You might try contacting USC's colorectal department and see if they have one on staff. Calling other CR departments at other hospitals might help too. Sue [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Fistula opening is now draining pus!
kmbr108kmbr108
kmbr108 Thanks for the response Rachel. I have had a seton drain put in before. I didn't care for it much either, but I have a feeling that's what's going to happen. At this point I just want the pain and worry to go away, so I'd take a seton drain and like it! [ more ]
rachelraven If it still hurts, you might need a seton in your fistula tract, to let it calm down. I'm not in love with my seton, but have to admit it's presence has made life better, and stopped that painful cyclical filling and bursting by allowing it the ability to drain continually. I just wear a 2X2 pad tucked next to it, and change it when I use the bathroom or after showers, etc. It drains small amounts of mucus, mostly, sometimes a bit if blood after a BM. [ more ]
kmbr108 Thanks Jan, I have been soaking twice a day, but maybe I should up it to four. Still waiting to hear back from the doctor. [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Bleeding
S sunshine06
skn69 Sunshine, Walking, running, bouncing on a trampoline or just about and sustained physical activity that repeatedly shakes or puts pressure on your insides can cause problems like that...granted not all of us have them but not all of us run post pouch surgery either....I used to do the 4 May walk-a-thons where I come from (1 for a different charity each weekend in May)and by the end of each one I had bloody stools, cramping, diarrhea etc...I was told by my doctor that sustained physical... [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
J pouch, pouchitis?
C Chris_JPouch
Scott F The experiences here suggest that your best shot at avoiding antibiotic-dependent pouchitis (or managing it without meds) are aggressive probiotic use (I take 4 VSL #3 DS packets/day), and a very low carb diet. That being said, long-term antibiotic use also seems to work fine for most folks, once they find out which one(s) don't cause any side-effects. [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Blood/lots of pain when going to bathroom
N NMLady
TE Marie My GI referred me to an IBD specialist at Mayo, 4 hours from there, as he nor my surgeon knew what else to do for my cuffitis after it did not go away after months of cuffitis or anucort suppository use. He said that he treats the entire digestive tract and that I needed an IBD specialist. He had no problem doing the pouch scope, taking biopsies and treating me. It was just when it didn't respond to the treatment that he referred me. I've had other pouchers warn of ER rooms as all doctors... [ more ]
Lesandiego My GI did not state "Why" and I did not ask. About 2-months after my TD, I kind of felt like my surgeon left me hanging since he did not request me to make a follow-up appointment. I was having some problems with frequency of stools and pain with gas. It would be more convenient for me to see my GI logistically, so I figured since I graduated through the HMO referral sequence to my Surgeon, It would make sense that I would downgrade through the same sequence after my TD. When I tried to get... [ more ]
Scott F If it helps, any (general) GI so content with professional mediocrity that they exclude J-pouchers is one you're better off without, IMO. [ more ]
See all 11 replies...
J-Pouch ForumsHelp! Need advice now!
Anyone know of major air-am-trak to Cleveland Clinic?
D Dot2
vanessavy I go every 2 months if she wants to book an appointment when I go. I can take her if she wants to cover 50 bucks in gas. PM me if interested. I am not going until end of August though most likely. [ more ]
Mike H Yes, there is an amtrak station about 25 minutes from the cleveland clinic. You can get there from baltimore (penn station) to washington then to cleveland. I do no think amtrak goes directly from baltimore to cleveland. [ more ]
twinkie There are direct flights from BWI TO CLEVELAND at reasonable rates. Also there is the Angel Flights, ppl who volunteer to fly medically compromised patients across the country that need specialized care but can't afford the travel. hope this helps. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
video capsule with pouch safe?
BM boy's mom
vanessavy I get them with a BCIR [ more ]
speech path I'm to have one soon, too. I'm nervous because I have narrowings and things get stuck often. I had an MRE and it showed narrowings. The doctor offered a great solution for my case- it's a patency capsule. Basically same size as the regular one, but has no camera. What's special is it will dissolve if it's stuck. So I feel it's worth the risk. After swallowing it, I have to have an X-ray three hours later to see where it is. If I do ok then I'll move forward with the video capsule. See if... [ more ]
Jan Dollar Yes, if Crohn's was not suspected, it could assumed there is a better chance of pouch salvage surgery being successful. If Crohn's was suspected, then pouch salvage would be less likely to be successful, and he would not be a candidate for a continent ileostomy(Kock pouch or BCIR). Jan [ more ]
See all 14 replies...
J-Pouch ForumsHelp! Need advice now!
Going on 5 days..tight anal muscles and sore lower abdomen
J jdgrimm
kathy smith The things that come to mind are pouchitis or a partial blockage. For a pouchitis diagnosis give your doctor a call and run your symptoms by her/him. For a partial blockage, try sticking with warm liquids for a bit to see if the symptoms lessen. Are you taking bowel slowers? If so, and if this is a partial blockage, you should stop taking them. Are you taking any other medication? I hope you get answers quickly. kathy [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
Three fistulas! Have questions.
K Kelsie
Kelsie We probably will. [ more ]
rachelraven Can you get a second opinion? [ more ]
Kelsie She had an MRI and that is what the radiologist report said, three fistulas. One horseshoe one that likely communicates with a smaller one and then a third tiny one. The surgeon couldn't find them on exam. I guess Im just nervous there is something there that isn't visible to the surgeon. It would certainly explain the pain and feeling so awful. So we just wait and worry?? I dont like the idea of waiting until they are really bad to know if they exist. [ more ]
See all 10 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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