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J-Pouch ForumsHelp! Need advice now!
J Pouch vs Ileostomy
FM Former Member
chiromancer I went through 18 months of difficulties and called it quits. The surgery from J to an ileostomy varies in how you go about it. No way to know until you get into it. I opted just to be disconnected and have an end ileo, figuring maybe a 1 hour surgery but due to adhesions it took 3 hours. We were going to remove the pouch if it was "easy" but upon looking at it would have been another 3 hours due to adhesions and this was not removing the anus and closing things up (I will not do this). [ more ]
TE Marie Mark makes a good point. If you have the ileo and then go for a j-pouch you usually end up with 3 surgeries rather than 2, which might not be a bad idea anyway. My daughter's friend sent me a DVD she produced about how she's living with a permanent ileo after getting rid of her j-pouch. She was very adamant that the j-pouch was not the way to go because of her bad experiences with it. If you PM me your address I will mail it to you. She shows how she deals with wearing a 2 piece swimming... [ more ]
MarkGregory It is hard to know exactly what to tell you about this, because we each have our own bias as to the j pouch surgery. My pouch has been nothing but trouble from the start, so of course I should say "dont ever get a j pouch" Those whom have had good luck, will recommend it. But dont fall for the line, "I can always try it out to see if it will work, if not, I can always get an illeostomy." It is never that simple. If you get a j pouch that doesnt work good, then you will be putting up with... [ more ]
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J-Pouch ForumsHelp! Need advice now!
plugged AGAIN!
B badguts
TE Marie I hope you aren't sitting in the ER again and have been admitted. Hopefully they can give you pain medication ASAP. Good Luck and make sure you tell them when you need help with the pain. Post when you can, hang in there. [ more ]
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J-Pouch ForumsHelp! Need advice now!
4 months from take down and still married to bathroom
JpoundsJpounds
vanessavy There are a lot of people actually that do Kpouches and CIRs (like the BCIR) Don't let a local surgeon tell you not to have it. I had everyone left and right tell me not to but they all couldn't give me one reason not to. My issues with the BCIR are nowhere as bad as my friend who had a jpouch about 2 months before my surgery so I guess I have it better. No colon removal surgery is perfect IMO. There is always some set of issues. My pouch is pretty good though here and there. I have been... [ more ]
Jpounds Vanness, I read your blog. Are you still struggling with th BCIR? Some days I get so frustrated. My doc in Boston has nothing more to offer me for the intense rectal pain, spasms, painful gas, and frequency. I had asked my surgeon if she did BCIR, She said no and said as far as she knew, only the Clevland Clinic doc did it. She recommended against it saying it would be difficult if I had complications to have treatment locally. When I read about it online it seemed like a good alternative. [ more ]
MarkGregory I know what you are going thru. Took me a good year to get back to some kind of "normal" . I spent many a night where I slept on top of bedpan. I imagine you have tried, but will ask anyway, have you tried changing diet? I have had to go to a completely sugar free diet. Absolutely no sugar, no high fructose corn syrup, no brown sugar, etc. Cant even have things like canned peas, because they have sugar added. I have to really read labels and check for sugar added, to see if I can eat it. And... [ more ]
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J-Pouch ForumsHelp! Need advice now!
ate corn now have had watery diarrhea!
B BrittanyKay
Donna H I think all pouches have a mind of their own and some days they are just cranky no matter what you eat. Like several people said, try a little bit of a new food and reintroduce it at a later time if it causes you issues. I have had my pouch for 15 years and all I can say is that it can be unpredictable at times. You are such a newbie so I would not cross anything off of your list. [ more ]
BrittanyKay Thank you Kathy I totally got what you were saying! Thank you for the encouragement too, as I am very new to this and can totally see myself not enjoying food/life because I am afraid to try! [ more ]
suebear I also agree that there are no universal bad foods. I've had POs from oranges and pineapple, but it was because I didn't chew it. I eat copious amounts of popcorn and have never had any problems. The biggest disservice we do for new pouchers is scaring them from eating a variety of foods. Just because someone might get POs from a particular food, is not a reason for new people not to eat it! There was someone on this board who hadn't eaten vegetable in 8 years because she read that people... [ more ]
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J-Pouch ForumsHelp! Need advice now!
confused as what to do
R Rebe0505
Rebe0505 will let you know what happens..actually seems to be better if not perfect yet...i am glad i do not have to think at this time about adding antibiotic..i am using sinus rinse twice a day..wouldn`t it be great if i improve on that! have till tuesday to decide to go for cat scan anyway...thanks rebe [ more ]
Jan Dollar Hmmm, I don't really know. Perhaps he is unsure of your diagnosis. But, still, a CT scan will not tell which antibiotic the infection is sensitive to. A CT might possibly determine if an antibiotic is even appropriate. Jan [ more ]
Rebe0505 jan i asked dr. office to ask dr. about culture ..they got back to me today and he has requested i go for cat scan of chest and sinus!!that really surprised me..what could that be all about? rebe [ more ]
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J-Pouch ForumsHelp! Need advice now!
constant Feeling of Urgency to empty pouch
FM Former Member
mgmt10 What you are describing sounds similar to the feeling I had about a month after takedown and it was an anal stricture that I had to have dilated. [ more ]
Rocket Pouhitits does make you feel that way and your symptoms are as someone with pouchits. But as the eariler replies stated, its probably your body trying to adjust. If you are concerned, I would contact the doctor. Keep track of how many times a day you are having a BM. It should decrease. Rocket [ more ]
beucfree I agree. Hopefully, it's only part of adjustment. For several weeks after takedown, I felt the pressure almost all the time. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Total colectomy with ileoanal anastomosis Butt burn n rash HELP!
L LilMoe03
kathy smith It's quite individual. Some of the younger people here wore diapers at night for a while. Or put a rubberized pad on the bed. It can take a good long while for things to settle down. The good news is that with FAP, your son probably won't ever experience some of the things that those who had ulcerative colitis get to deal with. Do a search here on FAP and you should get some great information. You might want to private message Chuckus (Charlie) . He is rather the guru on FAP and the j-pouch. [ more ]
LilMoe03 Kathy. Thank you so much for your reply. Yes im assuming is yeast infection. Cause his skin was raw and since butt paste its been like rough on the area and has bumps noe. How long after surgery you went back to normal? [ more ]
kathy smith You should have the doctor check for a yeast infection. But that itch is - unfortunately - normal for some of us. The two products that work the best for me are Nupercainal (in the vicinity of the Preparation H products at the drug store). Nupercainal has a numbing effect and almost never hurts when it's applied. The other product is Ilex which is the king of skin protectants. Your son will need to apply a thin layer of Vaseline or similar product over the top of it (but I rarely do that... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Strange pains?
M msh98991
Nice Nurse sounds like adhesions. look into having them manually managed through a process called manual adhesional release. I have to have it done every two weeks, but it really helps. [ more ]
Jan Dollar Seems more related to the surgery than your medication withdrawal, but stopping the Celexa certainly could cause you to be more aware of internal sensations. My guess would be that this is either an undetected hernia, or adhesions that are tugging on your nerves. The CT may or may not show anything if this is adhesion related. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
5TH Day of Red Hot Poker Up Backside
S Subzeromambo
Subzeromambo I have a bidet. It did not help much. [ more ]
kathy smith I'm so glad you found relief. You may be the new butt burn queen with that recipe (like that's a title you wanted ). It sounds excellent. You might want to look into bidets as well. Or a hand-held shower head. They both help greatly. kathy [ more ]
Subzeromambo Surgeon found no sign of fissures just passage damage from extremely acidic output. I had problems with highly acidic output even with my colon. New regimen that is definitely working: AM Morning meds, PeptoBismal, Immodium 1 hour later 1/2 dose Questran Lunch and Dinner with Immodium appetizer PeptoBismal and 1/2 dose Questran around 8 pm Cleaning routine has also changed. Instead of using a flushable wipe followed up with a schmear of Calmoseptine, I use Balneol on tissue to clean followed... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stomach distension and swelling
L lol?
ElmerFudd All normal. Things may be moving slowly, and you have some healing to do inside there. Bloat due to slow movement, and probably excess gas from what you say. Gas should resolve as your gut flora balances out again. As for the weight gain, I wouldn't be surprised if it's mostly water weight. Not sure your experience, but I went into the hospital pretty sick but at 185 pounds. When I left I thought I was in the 160s until a week of fluid runoff (could fill about 2+ portable hospital urinals... [ more ]
kathy smith If you're not feeling any pain and you have no fever then you're probably just experiencing the 'normal.' They manipulate things quite a bit and swelling sometimes takes a while to come down. Many of us have had the shape of our bellys change after this surgery so maybe that 'bloat' is yours. It seems like you're doing well and you certainly went to the very best place for your new plumbing. But if you continue to have concerns, don't hesitate to call and call again. Welcome to the site. I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bladder fistula
A akteacher
akteacher Yep, been experiencing those symptoms off and on. I had a bowel obstruction about 2 weeks ago and they did a CT for that. Wonder why it didn't show up on th CT? [ more ]
Jan Dollar The symptoms of a bladder fistula are repeated bladder infections and passage of gas from the bladder/urethra. A CT might reveal it. Jan [ more ]
akteacher Hi! Other than recurring bowel obstructions I have been doing pretty well. Just a little worried that I may now have a bladder fistula which is scaring me tremendously! I hate the thought of more surgery, going back to the bag or having a urinary catheter for weeks on end. I'm really scared to even see the dr. Hoping I could get some info thru here first. Thanks for responding! I hope you are doing well, too! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Year since takedown and cannot manage without antibiotics
J jeane
TE Marie Rebe0505, I know I'm prone to C-diff because I had it a couple of times before my surgeries. It was just off of my radar as I thought all of my problems were cuffitis related. My surgeon took no biopsies or stool samples during the scope he did and treated what he saw, cuffitis for only 2 weeks. Maybe I didn't have the C-diff then but I think I did. It's hard to tell without the stool test as C-diff and cuffitis's symptoms are so similar. It's like cuffitis on steroids to have them at the... [ more ]
jeane Thank you everyone for your posts. My GI is writing me a letter to hopefully get xifaxin covered. My insurance company is tough as my insurance is through my husband's employer and it took me quite awhile to get VSL3DS covered. I am on day four of xifaxin and not sure if it is really helping a lot or not. I still have chronic stomach pain and the annoying butt burn that canasa seems to do virtually nothing for. Below are a few links on the risk of antibiotic use and breast cancer FYI. They... [ more ]
liz11 kjeane- I too have never heard of the connection between antibiotics and breast cancer. However, there sure are a lot of other reasons to not be on antibiotics indefinitely. If you are concerned about those, then I couldn't imagine you moving to biologics. Also, I don't think doctors usually move you to biologics unless you have antibiotic resistant pouchitis, which it seems you don't have. So... your choices seem fairly clear. Stick with your antibiotic regimine and don't worry about long... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Unbelievable gas, higher altitude or pouchitis?
linalina
lina Thanks all. I think it is pouchitis. I also think the cipro is finally kicking in. Thank goodness. Sometimes it is hard for me to realize I feel ill when I'm busy worrying or thinking about other things. I started the cipro twice a day and I am starting to feel normal again. Phew. [ more ]
Jan Dollar Higher altitude should not cause more gas, but I suppose it could make it more uncomfortable. I think the more likely suspect is food poisoning, bacterial overgrowth, or pouchitis. When we travel we encounter bacterial strains we are not accustomed to. Duble dosing of probiotics may help, but a course of Flagyl or Cipro would probably be quicker. Since you've already started your Cipro, relief should be around the corner, unless it is the wrong antibiotic! You should see results within 3... [ more ]
CTBarrister It could be the flight itself that messed you up. Air travel always seems to wreak havoc on my guts. My sister used to live in Denver and I do not recall having any problems like you are describing when I went to visit her out there. However, while I was out there, I drove to the top of Pike's Peak and I suffered traditional symptoms of altitude sickness which required me to leave the summit pretty quickly. [ more ]
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J-Pouch ForumsHelp! Need advice now!
help interpreting again please
I itsnotsherry
Jan Dollar Actually, all the MORE reason that they would refer to Dr. Shen, since they are aware of his expertise and he is in the same system. It could be a pissing contest, but if you take it out of their hands and request it, then they can stop trying to be king of the mountain, because of "patient request." Jan [ more ]
liz11 sherry.. this is about YOUR health. It took me some time to get the guts to ask my local GI for a referral to Dr. Shen. But once I did it, it was no big deal. He even said that he was about ready to suggest that to me on his own.. though I don't believe him. Anyways, good doctors would only want the best for you. And good doctors should know their limitations and be happy to have you seek a second opinion from the true experts in this field. And in your complicated health situation, Dr. Shen... [ more ]
itsnotsherry That is good advice, and like you said, it would be very difficult to ask my current doctors to write such a letter, especially since they are at the Cleveland Clinic Florida. I wonder if it would be a pissing contest. [ more ]
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J-Pouch ForumsHelp! Need advice now!
can i drink or something?
I itsnotsherry
liz11 hang in there. Go have another glass of wine and play with your other two dogs. They are sad too and would enjoy your company. [ more ]
itsnotsherry Thank you all for your thoughts and condolences. This is unbelievably difficult. It so hard to breathe..... [ more ]
samantha1803 I have to share condolences for the loss of your faithful companion. I have 4 dogs and they are my life savers with all of the health issues I go through. I have been in bed nearly full time for months and they are always here being cute and loving me. I truly could not fight this fight without them! I am going in for surgery soon and I want to bring my one special guy to the hospital with me! It's so tough to be sick without him. My husband wants to make a jacket with a red cross on it for... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stomach Bile
C CathyC
Jan Dollar I would think it would make sense to take the dose that deals with the symptom, and take laxatives if necessary to counteract the constipating effect. This sounds like bile reflux (not to be confused with acid reflux). Bile is excreted from your gallbladder through the common bile duct into your duodenum in response to a meal. This is past your stomach, so it should not actually be getting into your stomach. The pyloric valve between the stomach and the duodenum is supposed to prevent reflux... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abdominal pain need advise now!!!
S Selma
Selma Well I went back to the ER on Friday and after a CT was admitted with a partial obstrucion. I have an NG tube to relieve pressure in the bowel and NPO. I feel better. Today I had a small bowel follow through x-ray with barium. It shows a small obstruction in an area close to my stoma and constriction in several places in that area. There is still pain. The internal medicine guy gave us a good explanation and says I may need surgery because the strictures will not go away. He will meet with... [ more ]
Spooky I agree. This does sound like a partial obstruction, and I've also been told that such may not necessarily show up on an x-ray. I've had several partial obstructions (all when I had an ileostomy) and yes they can be very, very painful. You may still have residual pain even after the blockage has cleared. Walking, drinking plenty of fluids, warm baths, and gently massaging the abdomen may help. Sometimes you can actually feel where the blockage is--I have been able to--and if you can, just... [ more ]
liz11 selma- It does sound like you have a partial blockage. I don't believe it would necessarily be seen on an xray. And I agree why do a CAT scan when even if it showed it there isn't much they would do about it. Try all the blockage tricks: drinking grape juice, moving around A LOT including twisting bending, strecthing, and jumping, taking hot baths, hot showers, put heating pads all over your abdominal area. If none of that works you really need to be physically seen by a GI doc or colorectal... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I am a Cleveland Clinic Turnbull-Cutait pullthrough procedure SURVIVOR!!!!!!!!!!!!!
A anotherchance
liz11 So glad everything went so well. Yeah to the CC team (and of course my favorite - dr.remzi) for taking such great care of you. Gotta love that place, their skills, bedside manner, and the care all the docs, nurses, techs, etc.. give you in the hospital. Hope your next step goes as smoothly. Well wishes on your ongoing recovery. [ more ]
anotherchance Thanks Jan and CeeeeCeeee! Wow, I just never thought the 'Turnbull Cutait club' would be so small, let alone just me!!! I tried other online forums and still couldn't find another TC patient! That's ok, I'll take the resident 'TC' expert title :-) Hopefully I can even help ease the fears other pouch 'redo' patients as they face their sometimes daunting journey ahead. [ more ]
Jan Dollar This is such a rare procedure, you are now our resident expert!! Not sure that is such a great honor, but there it is. Fingers crossed that this works out for you. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Holiday in Finland
S sudie
Linda2 Did you take the psyllium with lots of water? It can cause a blockage if you don't. I usually take a teaspoon in 16 oz of water. [ more ]
TE Marie Citrucil, not sure of spelling, available there, I don't think it is made with psylum. Can you go to a pharmacy and ask them if they have either one behind the counter and if not what do they have that is similar? Also have you tried eating oatmeal? I guess you wouldn't want it at every meal, lol. Good Luck! [ more ]
sudie Yes the benifiber is what I want, but not able to get it here so far.need to know what to subitute it with, I am also gluten and lactos intolerant. Psyllum gave me a blockage so am at witts end. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gallbladder/ Joint pain?
FM Former Member
TE Marie Has anyone suggested you see a rheumatogist? I think you should go see one as it could be caused by some kind of arthritis. If you went on vacation I hope you are doing ok and that it is reducing your stress. [ more ]
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J-Pouch ForumsHelp! Need advice now!
To heck and back! Please give me any opinions!
P peewee80
peewee80 thank you so much Jan! Just some insight makes me feel better. I have had a couple other blockages and all the symtems were the same except for the abdominal fluid. The doctor here told me there is only a tiny amout in a womans abdomine and he said their was a lot. Not trying to make a mountain out of a mole hill you know just DONT wanna do that again! [ more ]
Jan Dollar From what you describe, this sounds like a small bowel obstruction, not too uncommon with intestinal surgery. It can be from adhesions (internal scarring), which typically can cause kinking of the bowel, and the obstruction you had. The conservative treatment you had is best, because surgery can lead to more adhesions. Sometimes surgery is required, but it looks like you were lucky. There really is no way to predict if this will recur or not, and it generally has nothing to do with what you... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Don't know what this is
S Sara1986
TE Marie Congratulations for your new baby My internist told me that the antibiotic flagyl I took to get rid of my C-diff would not help a sinus infection. I always thought an antibiotic was good for every thing with some better than others, depending on what was wrong with you. I just got over a C-diff infection that took 2 rounds of flagyl to kill. She didn't want to put me on an antibiotic because the kind I need for my sinus infection could cause my C-diff to flare up again. So if you start with... [ more ]
Sara1986 I meant don't [ more ]
Sara1986 Thanks Tammy! I have an appt with my gi next week. I just finished my last antibiotic from my sinus infection today. I hope I do start to have the runs again:-( hopefully I will feel better until I see the dr [ more ]
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J-Pouch ForumsHelp! Need advice now!
Just had step 2 of 3 J Pouch, please read
BD Blake D.
mgmt10 Glad you went to the doc and got it figured out and taken care. Hope you feel better real soon! [ more ]
Blake D. Hey guys! You are some knowledgable J Pouchers, some of you hit it right on the head. I woke up today itching my skin off, I had a really bad rash on my back, stomach and a few other places. My wife took one look at my back and I could hear her panic. Then we looked at my incision and there was still a lot of puss and stuff coming out. We went to the hospital and one of the colorectal doctors got me in right away and was pretty sure the incision was infected. He packed the incision which I... [ more ]
Jan Dollar The rash (sounds like you had hives), itching and swelling sounds like a drug allergy, so you need to call the doctor on that. Could be an antibiotic you are no longer taking, since the reaction can occur after you discontinue it, but it could also be the pain medicine, so call right away. Even if you were taking the same medicine in the hospital with no problem, you can develop an allergy at any time. You also need to report the oozing from the incision, unless it was happening before... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Affrent limb syndrome
L LisaT
Jan Dollar You had me going there at first, since ALS is amyotrophic lateral sclerosis (Lou Gehrig Disease). Not usually associated with the j-pouch, but one of our moderators, Dave H, actually died from it. But, I see from your topic that you actually are talking about afferent limb syndrome, which is a structural defect in the small bowel entering the pouch that causes obstructions. Surgery is usually needed to release adhesions or repair the pouch to prevent repeated obstruction. It is not common. [ more ]
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J-Pouch ForumsHelp! Need advice now!
can anyone interpret for me? waiting for the doc, but am anxious
I itsnotsherry
Jan Dollar Bummer! You are definitely between a rock and a hard place, but oly you can decide what risks you are willing to assume. We all could potentially face the same dilema, since there is no such thing as a 100% certain UC diagnosis. We all just hope for he best. Good luck deciding. At leadt we are here when you need to vent... Jan [ more ]
itsnotsherry Yes. They changed my diagnosis about 10 months ago. I had what we all thought was UC for 23 years. I just wish I could go to sleep and wake up however it is meant to be...no decision on my part..I know, a fantasy world! Thanks for helping me, and everyone else on this site. You are very special, and I appreciate all you do! [ more ]
Jan Dollar Cimzia? OK, so you must have Crohn's. Pouch revisions, redos, whatever, would be contraindicated, regardless of how many surgeons you see. Cimzia is not used for UC or pouchitis. I understand your dilema now. Basically, your choice is to deal with your dysfunctional pouch with medical intervention or opt for pouch removal and ileostomy. Not much of a choice. You just have to decide which way the balance is tipped for you. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
What Next?
C crobbins
crobbins Jan, Thanks for the quick response. I was totally unaware of C. difficile infection. I just had the test done for it and luckily a friend who happens to be a surgeon told me to come into his office today. He recommended metamusil,yogurt, and said the probiotics might help but he wasnt sure how long a process they might be. He says that he will get the test results within the day so I am incredibly relieved that things are moving so fast. I think it is caring people like you that make this... [ more ]
Jan Dollar Oh my gosh! This is not good at all! Any doctor who is not a county bumpkin, should be well aware of antibiotic associated diarrhea (C. difficile infection). The CDC has sent numerous alerts to all medical providers over the past ten years or so. You need to be tested for C. difficile and probably a course of Flagyl or even vancomycin for this. I am not calling your doctor stupid, as I like to give everyone the benefit of the doubt, but.... It has been years since they thought you could not... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch Surgery 2009, now have UC diagnosis, HELP
FM Former Member
jeane One small ulcer at anastomosis site but pouchitis in distal pouch above anastomosis site and cuffitis that is really doing me in lately. I am trying to wean off antibiotics as I have been on them since takedown and the rectal canasa does not seem to be doing anything. Every time I try to wean from antibiotics my bothersome symptoms return. The jpouch surgery has not been a great experience for me and yes my pouch is also very active at night and I rarely get more than 4 hours of sleep... [ more ]
Former Member My pouch seems to be just as active at night too. Don't sleep much and I'm sure that contributes to the fatigue. [ more ]
Former Member None in the pouch just at the anastomosis site. Are you on meds? and Do you adhere to certain diet since your surgery? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Tear in J-Pouch & Fistula's
M mehoffma
beckysmom Sorry to hear what you are going through. My daughter didn't have any fistulas, but after surgery to revise her j pouch, she had an infection at the incision site(that was left open to heal from inside out) and that required a wound vac, but only for 10 days. Then she developed a hematoma presacral abscess and that was also infected but they put a drain in, only for 5 days, it was caught early. Can't you get a appointment sooner that 7/12? Seems the draining might be an issue?? Hope you get... [ more ]
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J-Pouch ForumsHelp! Need advice now!
what would you do?
I itsnotsherry
Jan Dollar I would be more worried about your low platelets. They are not critically low, but still waaaaay lower than normal. It is easy enough to rule out the UTI with the urine test. Do what is asked of you, but I don't see the need for an emergency MRI. Jan [ more ]
liz11 I vote with your husband. Better to be safe than sorry. AND you surely don't want to end up in the ER over the weekend, cause you don't get the "real" docs then. If you go now or tomorrow morning.. you will end up with good docs taking care of you and/or your regular docs will be reachable for sure. Hubby wins this one. Take care of yourself. [ more ]
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J-Pouch ForumsHelp! Need advice now!
cramping post takedown
R run4life
run4life Thanks for the responses. I am feeling better after I finally passed some gas so hopefully that was the issue. Thanks!! [ more ]
liz11 yes you could have pouchitis immediately upon takedown. But your situation sounds more just like gas that needs to move through. Try moving around a lot, twisting, bending, walking. Use heating pads, hot baths, hot showers. See if you can get things moving. [ more ]
beucfree Gas sometimes feels like cramping. First couple of months I had several things happening to me that I couldn't explain. I remember having severe back pain that turned out to be gas. I would say give it some time and if cramping persists, call your surgeon. You can ask for anti-cramping meds. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Incontinence following a fistulotomy
K kilodalton
Jan Dollar This close to the procedure, I would assume that your symptoms are related to traumatized nerves. If after a few more weeks your sensation is not returning, you may want to have some tests. But even then, it may be too soon. It can take a very long time for nerves to repair themselves, and it depends on the degree of damage. In most cases, it is related to swelling from the procedure, which is minor damage, and resolves more quickly. More severe damage can take up to a year to regenerate. [ more ]
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J-Pouch ForumsHelp! Need advice now!
pain/cramping Don,t know if anyone can help !
FM Former Member
Former Member Thank you for all your thoughts have tried eating more time a day and eating less it seems that it dose not matter when i eat it just stays there till it builds up to a point then i start getting the pain again,I now get pain in my lower part off my tummy. i just think things are getting worse and now been told have to go on waiting list to see a different consaltant make me so cross. [ more ]
liz11 try eating less food at a time. So instead of three meals a day.. try eating 5 meals a day. Little bits often rather than full meals. See if that helps things. [ more ]
Former Member With me when I get cramp/pains it is usually one of two things. Gas not wanting to pass or its some-type of blockage. I watch what i eat and chew longer to help avoid a blockage. [ more ]
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J-Pouch ForumsHelp! Need advice now!
leaking pouch
A athena
Jan Dollar Did they leave the drain in place for a prolonged period, or just at the time of the CT guided drainage. I had an abscess due to a leak, and had a drain placed under CT guideance and left in place for a month, with weekly CTs to check for collapse of the abscess pocket. The drain was not removed until the pocket was fully collapsed. I did not need follow up antibiotics and the leak did not recur. Apparently, the leak occurred early on and sealed off, but leaked enough to cause a huge abscess... [ more ]
Catinthehat I had an infected abscess from a leak after surgery (total colectomy) that was confirmed by CT scans and cultures. I had to have heavy duty antibiotics via a picc line for 8 weeks. I wore a portable unit during this time and was able to be at home and work some. I don't believe it will go away on its own, but just my opinion. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
complicated surgery needed... Dr Deitz
LU LisaTX USA
vanessavy If you had a BCIR then had it removed, I am not sure why you did though? Then the kpouch is pretty much the same thing... I believe you have to have at least 12 feet of small bowel left to make a continent ileo. CC is the best though so go and see. I have had surgeons tell me they could not do this and that when I was consulting. then I went to one that was similar to perhaps yours you are considering, suggested he could do certain surgeries and that he didn't take the word of anyone so he... [ more ]
liz11 I might suggest you invest in a trip to Cleveland to meet Dr. Dietz in person and to review your situation. My surgeon at CC (who is not Dr. Dietz) is very conservative but also extremely experienced. He is frank about the pros and cons of each and every situation he has dealt with with me. I suspect these characteristics are common with many of the CC surgeons. Many of the CC colorectal surgeons deal with very complicated IBD and jpouch issues from araound that world that other doctors have... [ more ]
Jan Dollar I never heard of a frozen abdomen, and I do quite a bit of reading. But, from what you describe, it sounds like your abdominal organs are all "tied up" from adhesions. So much so, further surgery could damage your remaining organs when they try to release all those adhesions. This sort of surgery would require the skill of someone quite experienced with complex adhesion release. My understanding is that the surgeons at the Cleveland Clinic colorectal department have pretty vast experience... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
How to find a private surgeon?
FM Former Member
Former Member thanks everyone so much for your replies... However I think flying to the states would be a bit much LOL!! I had EUA with my colorectal surgeon pretty pronto in the end, turns out I have deep and severe fissures and lots of ulcerations...apparently I have a very crohns looking bottom. So I'm nervously waiting for my biopsy results to come through hopefully on Wednesday. But I have so many problems I'm going back to the stoma...asap if I get my way. The jpouch things has not worked for me and... [ more ]
Jan Dollar Gee, how about the Mayo Clinic? They are supposed to be pretty good there. Jan [ more ]
KelseyHey2308 Oh I'm sorry I meant if anyone had heard of any in Minnesota. Good luck with your search LittleRoo. [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Pouchitis-Flagyl-Misery!! Help!!
G Grandonion
Colleen2001 I have had very negative reactions to Flagyl. It makes me feel so nauseous and on the verge of vomiting the entire time I am on it. I haven't been on it in years, as my docs always prescribe something different due to my reactions. If it the side effects are worse than what it is meant to treat, I feel it's not worth it and would suggest you ask your physician for an alternative. Best of luck! Colleen [ more ]
CeeeeCeeee The only reaction I have to Flagyl is experiencing a slight case of nausea the entire time I'm on it. I get the dry heaves! When given to me in the hospital, IV, they added some anti-nausea meds. Because I don't really mind losing my appetite for a few days, I don't mind this symptom. As long as I stay hydrated, it is a 14 day diet for me! [ more ]
lhh65 I was on flagyl when I had C. Diff. in my colon, and, yes, I had problems with it, too. In fact, it seemed to increase the bleeding I was having. Plus, every day in the afternoon, I would get terrible pain in my upper back. It was unbearable. I was on Vanco at the same time, but it was the flagyl that caused the problems, as I was on Vanco for the greater part of two years and never had side effects like that from it. I hope you feel better soon. ~ Laurie [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Opium drops?!
B BrittanyKay
Subsky That's awesome the drops are working for you Brittany! I've never been on them before, but if I ever run into a situation where imodium isn't working, I'll look into trying the drops out. [ more ]
BrittanyKay Thank you everyone I have been taking the drops, and it has done wonders for me!! I am able to sleep throught the entire night, and leave the house with out worrying about running to the bathroom! The taste is nasty, but I am getting use to it. [ more ]
chiromancer One of the advantages of mixing with a bit of water is that you can premix and carry with you in in small bottles (I use small plastic, the size as used for carrying liquids on a plane) The other advantage and why I always do it even at home, is it doesn't taste near as foul. [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
Extraintestinal symptoms of UC after surgery
B BethT
mgmt10 Yes, this surgery isn't a "cure" for UC...more like a solution to the problem so all the other little nastys that go along with UC may still end up afflicting us. [ more ]
Spooky It's not uncommon, as removing the colon may not immediately address other areas of inflammation. In fact, I suffered most of my intraintestinal manifestations AFTER most of my colon was removed. I still had the rectum and my UC there never went into remission, but after my subtotal colectomy, I developed a retinal inflammation and later on, severe mouth ulcerations (not just the common tongue ulcers; this was all over my gums and I had difficulty eating). I was also worried about Crohn's,... [ more ]
liz11 Yes its common. In fact I have a doc appt next week for the bad arthralgia I'm having. I thought all of the extra-intestinal issues would all be gone after having my entire jpouch recently removed, but how wrong I was. I just can't stand it when people say having your colon removed cures UC. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Advice on pouchoscopy results?
J jeane
TE Marie Thanks Kjeane & Liz, I too have the joint problems and sweats but have fibromyalgia and other problems. I can't tell what is causing what anymore but am pretty sure it is all autoimmune relates - as far as the doctors can find. Liz I am so sorry you had to suffer so much and it had to be horrible if CC didn't do a revision. kjeane you tell it like it is, I am a crab too but I don't have to deal with many people as my children are grown and living out of state. I wish they were closer. My... [ more ]
jeane Liz, I too suffer from the symptoms you describe from pouchitis except my frequency is tolerable (nighttime seems a bit worse than daytime). The constant fatigue and body/joint pain can be unbearable at times and I often get the sweats out of nowhere. My GI just recommended a pouch decogram (not sure if right term) to see if I have functional problems with my pouch as well. My surgeon told me my pouch should expand to the size of a small football after the adaptation period and I was... [ more ]
liz11 I had cuffitis and pouchitis together. Horridly. I was going about 40-50 times a day immediately from takedown. Was thrown to the side of the road by my surgeon and left undiagnosed for almost a month until I got back to a GI doc. Cuffitis seemed to tame down with daily canasa suppositories. Bleeding pretty much stopped and decreased going to about 20+times a day. Never bothered me doing rectal meds. If it helped me by reducing bleeding and frequency I just carried on. I had been on rectal... [ more ]
See all 11 replies...
J-Pouch ForumsHelp! Need advice now!
Bad J Pouch
FM Former Member
samantha1803 Hi Fiona, I was in your EXACT same shoes. I had the exact same story with my bag/stoma everything + was allergic to the adhesive that held the bag on. I had my surgery in Minnesota as that is where I am from. I had the same 20 minute, "transit" time--mouth to toilet. I was referred to the mayo clinic after 3 years with my pouch. They did all the tests and and then some, meaning on all my body systems. The conclusion was to get rid of my pouch and go back to the bag. Well I just couldn't, and... [ more ]
Former Member Thank you so much for all your answers, my head is all over the place but i have written everything down to ask my J Pouch Nurse tomorrow I am on the highest amount of Loperamide some days but alot of the time i cant take the highest amount cos it constipates me and that is just as painful I had some kind of test where I had a catheter inserted into my anus, but i was asleep while i had it done but it woke me as they was trying to remove it cos of how painful it was!!! It has left me red row... [ more ]
liz11 also wanted to add that the diet my doctor put me on to slow down transit is called an "anti-dumping diet". Its primarily intented for people who have gastric bypass surgery but she gave me the techno lingo explaining why it works for people like us and I surely can't explain it all. But here's a link which summarizes the diet. http://uvahealth.com/services/...dumping-syndrome.pdf and yes.. it works.. along with the other recommendations I previously made. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Scared
M Mo
Spooky I've on several occasions had what seems like a rather large amount of bright red blood right after a BM as well. It's not entirely uncommon, but it's alarming when it does happen. Usually it happens once, and then hours later when I go again, there is nothing. Once it happened immediately after a run, other times I haven't been able to link it to anything. Hemorrhoids are one explanation (and they can be bigger than you might think!), but the pouch also has a lot of blood vessels as well... [ more ]
Mo Thanks everyone. I do have an appointment scheduled for next week. I have the same feeling though, it will stop now that I have actually made the appointment. This has been going on for months though, on and off, and it's a pretty significant amount when it does happen, not just streaks on the TP. I didn't know hemorrhoids could cause that much blood. Thank you, again. [ more ]
samantha1803 i also am a long time poucher---nearly 14 years come to think of it. I just started getting that in the last few years myself. It is most likely hemmorroids. I woould still check with your GI to be sure there is nothing amiss with the cuff area. I do like Kathy's comment though of scaring it away with an appt. You never know though. It sounds like it's been a while since you have seen your dr. [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Ozone enemas?
FM Former Member
TE Marie I still have UC/cuffitis as evidced in my pathology reports. What is an Ozone enema any way? [ more ]
kathy smith I'm not sure how ozone treatments for IBD would work since you have a j-pouch and theorhetically no longer have IBD, right? kathy [ more ]
TE Marie Never heard of them but it I were you I'd try them. [ more ]
See all 3 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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