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J-Pouch ForumsHelp! Need advice now!
possible bladder cancer?
BeckyMBeckyM
TE Marie I hope you have found out all you need to know by now and have a treatment plan. Not knowing adds to the stress of it all. I pray all will be fixed and that you'll have the joy of raising your children and grandchildren! You have a great attitude, keep it up. [ more ]
Donna H Becky, I just tear up reading about what you have been through. You have such a strong will and that goes such a long way. I am praying for you and your family. God bless. [ more ]
Not your average gal! I am sooo sorry, Becky! My prayers go with you in this terrible and difficult time. I can't imagine how you must be feeling. There is an extensive history of FAP on my father's side of the family, so I know a little something about it, and this was one of the reasons I had to have a colectomy. I am thinking of you, sending all the healing I can muster, and may you be surrounded with everything you need for support for you and your family. Susan [ more ]
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J-Pouch ForumsHelp! Need advice now!
rectal procidentia
K kk
TE Marie KK, I looked up "rectal proidentia" and it is a big deal, in my mind. Roughly it means complete rectal prolapse that leaves the patient incontinent. Or it could be caused by hemorrhoids. BIG difference. Pelvic Floor therapy was one of the treatments. Another thing that I didn't know about. Another possibility of something to add it to the "things that are not causing my problems" list. Did he discuss anything, like Pelvic Floor Therapy, with you? [ more ]
Scott F The attitude and mood get recorded because they are *sometimes* very important symptoms. Ideally they aren't about judging you! [ more ]
liz11 te isn't it funny to read that stuff. I've been collecting my records and it was quite amusing reading their "everyday" comments about me...pleasant, thin, outgoing....But Even the one that said i was "irritable" when a stupid resident and then fellow couldn't get my medical history straight for the life of them and I blew up at the doctor for wasting my time! [ more ]
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J-Pouch ForumsHelp! Need advice now!
occasional bright red blood ??
PouchomarxPouchomarx
Scott F Sounds like a possible hemorrhoid to me. [ more ]
TE Marie I've bled with cuffitis like this pattern. It's like the blood comes and then the pain gets worse with burning, cramping and frequency but not much more blood. Sometimes I don't have much blood at all and others I can have a stool full. If you don't have any other symptoms it's probably as Jan said. [ more ]
Jan Dollar If it was cuffitis, it would have been apparent on your scope. Plus, cuffitis does not come and go in the same day. More than likely, it is a small blood vessel that bursts, bleeds, then stops. Are you straining at all? Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Low grade dysplasia--need surgeon recommendations
P PH
Not your average gal! Is the dysplasia localized or diffusely spread out in the colon? I had the same issue--in the form of an adenomatous polyp. Because of my long UC history (which turned out to be Crohns after the colectomy) and my family history of colon cancer, they lopped the entire colon out. Many people have a good result with this procedure. I am one who did not. I only wish I had done a little more research before hand, but I didn't know what I didn't know. In retrospect, since it was localized, I wish... [ more ]
Scott F Please give him my regards if you see him! I used to send him a thank-you note every year, but I've gotten lazy. [ more ]
suebear I also traveled to see Dr. Robert Beart. He is no longer at USC; he's at Glendale Memorial. I think his office is right next door to the hospital and is named the Institute of Colorectal Diseases. You can Google him. Sue [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hubby has pain on the side of his stomach
B bja72982
Jan Dollar People who have formed problematic adhesions (internal scar tissue), tend to continue to do so. It forms within the first two weeks of surgery, but can lay dormant for years, even decades before trouble starts. It is possible that this is from the surgery he had to release the adhesions before. If he feels like it is the same scenario, it probably is. The fact that he is still moving his bowels probably means it is just a partial obstruction; a little kink that can work itself out. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Imaging for abcess/fistula
I ISeeUC
Mickshell Liz , please let me know how you get on, I never thought about whether I would at some point need a stoma location, so that will be one to ask my surgeon after my scans depending on which procedure they decide on. Im hoping in the next few months I will be going surgery as this is having an effect on every aspect of my life, and I'm fed up off it now, with the pain, discomfort, discharge and feeling unwell. Good luck Liz. shelly x [ more ]
liz11 shelly- thx for the info. I am up to almost one year anniversary of my jpouch removal surgery. Along with that comes one year of dealing with a sinus tract going into a large chronic unhealed wound (from where the jpouch was). My surgeon - best of the best- has tried everything. I have had 9 EUAs for incision and drainage and even an experimental glucose injection to instigate scar tissue formation in the last 10months. Last EUA was just last week, which included a nice 5day hospital stay! [ more ]
Mickshell Hi Lizz My previous surgeon who had done all my surgeries even tried something that had never been tried at the hospital before called endo-sponge vacuum assisted closure, it was like a wound vac, the sponge was placed in th perianal wound and I had a vacuum drain which I had to carry around ( it wasn't a good luck!) but that didnt work although I hear it works for some, it was suppose to be 10 weeks of 1-2 small procedures a week under general anaesthetic, for them to change the sponge and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
to Humira, or not to Humira
jeffpjeffp
LisaT Hi Jeff, Long story short, my pouch is 17 years old. I began having right side pain, three strictures, and an inflammed pouch about 3 years ago. On and off antibiotics, finally in Sept. the crap hit the fan and I ended up in the hospital for 19 days. I had a fistula and phlagmon (abcess). I also had the Promethius blood work done and it came back "inconclusive". I've never had bleeding typical with Crohn's. My GI and colorectal doc recommended Remicade. My choice was to give it a try, or... [ more ]
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J-Pouch ForumsHelp! Need advice now!
3weeks out
P pinky56
Jan Dollar It all depends on how severe the pain is and whether there are any associated symptoms, like swelling, redness, drainage, fever, etc. if it is just mild pain that is not getting worse, generally it can wait until your next appointment. But, if you are concerned, you can call your surgeon's office and leave a message for your surgeon so you can get his advice. He should be able to decide if it can wait or you need to be seen sooner. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
possible fistula please help
BeckyMBeckyM
BeckyM I went to the urooncologists yesterday and he said i had a tumor growing, It is the sie of a golfball maybe smaller right underneath my uretha, we arent sure if it is anywhere else yet, i have to go have a pet scan tomorrow and see a bladder dr and then off for a pet scan, im so afraid, i cannot believe that they didnt find this earlier with the ct scans and them putting me to sleep and doing a pelvic exam, i just need prayers and support and i am so gpad that i have this site to come to, ty... [ more ]
Jan Dollar Thanks for the clarification. But, yeah, you can still have a fistula without your rectum or pouch. Unusual without IBD. I see you have FAP. I wonder if you have a bartholin gland cyst? Fairly common. http://www.aafp.org/afp/1998/0401/p1611.html Jan [ more ]
BeckyM Thank You Jan and NJK, I first wanted to say that I do not have a pouch inside, I had to have all of my rectum removed and my large bowel,I Have a permenant ostomy. I go on Thursday to see my obygn again, I am hoping at least he can tell me what this new lump is that came up, I am worried about infection or septic issues, I do not run a fever and i do not feel ill,I cant sleep at night cause I burn so bad, I am applying a barier cream they gave me at the hospital when i was admitted.I soak... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abcess?
K kkohlman1
kkohlman1 Well, the CT was negative for abcesses..but they did see alot of scar tissue. They also saw an ovarian cyst. Doc says to wait it out...Thats fine I guess, but dosen't explain why I feel crummy. [ more ]
TE Marie Good as my surgeon blew me off about an infection and it ended up being a big abscess they had to cut out. I'm sure if he'd listened to me and prescribed more antibiotic after the first round didn't clear it up I would have avoided the huge one under my original incision and if it had not been there I wonder if I would have developed the incision hernia right there either. Good for you for not taking her opinion as you know when something is wrong with your own body. Please let us know the... [ more ]
kkohlman1 Scott- that is a great question...she really didnt tell me..she kinda just blew it off...I felt a bit like a mosquito being swatted at.. Jan thanks for reassuring me..Ive done alot of internet reading, seems to me enterococcus isnt so easy to get rid of...I have a CT scheduled for monday..it would have been for tomorrow,but we are preparing for an ice storm...FUN! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hospital in Italy?
G Ginabello
mari60 is called the same J pouch o tasca ileale.If you like send me a private post if you are around here, I live about halfway between Roma and Firenze and if I am in town you could come and say hello...and let me know if you need information about hospitals and depending where you are I might find out,may be asking my doctor. [ more ]
Ginabello Thank you we will be in Calabria and then travel to Rome Milan and Venice.. I will look into the hospitals.. What is a j pouch called in Italian? [ more ]
mari60 yes,where in Italy? I had my J pouch made in Perugia and I think they are good there. In Bologna at the S.Orsola there is a IBD big center,probably the bigger in Italy.I think in every city you could find some good doctor who knows about it.Where are you going to be? Let me know if i could be of any use x you . [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abcess\Fistula?
G Ginabello
Ginabello Hi Becky I hope you get answers soon it is so difficult to always question what the doctors think. I feel great most of the time but like clock work every 4 to 5 weeks it starts to get sore and drain..I think I am going to go to the Mayo clinic I think I need answers and from what I read on this site they may just do that for me.. I am afraid that something is going on and my doctor says its fine . Please let me know how things go for you.. [ more ]
n/a Becky, it does sound like a fistula. I'm not sure if you're seeing a GI or have seen your surgeon as well, but - a good colo-rectal surgeon is who you want to see. My pouch-vaginal fistula was found via MRI after what I thought was an abscess developed. It's my understanding after much reading on fistulas that EUAs are actually the best way of finding a fistula and its path. An EUA is basically a super-scope done while you're under general anesthesia. In the meanwhile, I'd continue with the... [ more ]
liz11 oh Becky. I am so sorry you are going through all of this. It definitely sounds like you have a fistula. I don't know what insurance you have.. but you are correct, you need to keep hunting until you find a doctor that will help you. Can you do more research and tell the doctors exactly what tests you need? Have you had a perlvic MRI? Also - any possible way you can get to the cleveland clinic in ohio? I am sure they would figure this out quickly for you. If you cannot get there due to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
j-pouch pain
T tammy1
tammy1 im so frustrated it burns constantly.they are diong a mri friday.i guess if its crohns it will show up their also doing a blood test for that i hoe they wont dismiss the thought of adhesions ihope they will do surgery if thats the thought and everything else turns out fine this constant pain is bad althou the predisone seems to be helping some but still not taking the pain away [ more ]
Jan Dollar If you are in serious pain and completely blocked, you need to go to the ER. It could pass on its own, but sometimes it can become a surgical emergency. If the pain is not that bad, you can try riding it out, stop all solid foods, and move around a lot. Jan [ more ]
LC You should go to the emergency room if the pain is unbearable and you aren't pooping or able to eat. I don't think a flare should hurt that bad without other symptoms. If its a pinching burning kind of pain that comes in waves its probably an adhesion. I had problems with them before I had laproscopic surgery to remove them. My doctors indicated that they tend to get bad 3-5 years after having surgery. My doctors sounded nicer and gave me a small number of morphine pills to take if the pain... [ more ]
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J-Pouch ForumsHelp! Need advice now!
New member
L L.DL
TE Marie Hi L.DL, I see what you mean, you have a doctor that is discussing the possibilities intelligently and not making decisions for you. Condescending medical professionals are the worst. I thought my new Neurologist was talking down to me the first visit. I only went back as he comes highly recommended and while he didn't tell me much about the results of his examination the first time he did the 2nd. I'd guess you really need to have the fistulas fixed. I've read about ladies on here that have... [ more ]
L.DL Hey Te Marie, Thank you for your reply, I'm sorry to hear about all your surgeries and I guess we're all champs for getting it though. I'm so glad I came across this forum, it really helps reading about everyone, we often feel alone. I have met a lot of patients in the hospital where I've had my surgeries. I was asked by my stoma nurse to go and speak to people who were going though have to have ileostomies or considering having the pouch. So that was my only support group for me. I will try... [ more ]
L.DL Thank you Jan for your reply, and thank you to all I'm new here and just learning on how to get around the posts ,and also reading about everyone else'sissues really helps us get through our delemas I'm really worried about this procedure and as far as knowing how far up the fistulas is, the old dr. Never really told me how far up it was. Anyhow this new dr. Is now sending me to a gyno. He works with who deals with these issues.I guess maybe to see how far up it is? Anyhow I'm gonna give... [ more ]
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J-Pouch ForumsHelp! Need advice now!
New to having a j pouch and not coping well - help!
S StephanieK
Kia I'm sorry you are struggling and I hope it improves soon. I'm sure you'll get a lot of great relies on this post. This site is great. I'll just add my two cents....which works for some, but not for everyone. For me, I can't add fiber. It increases gas/bloating/discomfort/frequency/butt burn. In fact, I eat a low carb diet and only eat whole wheat bread/pasta. For me, that greatly reduced all the negative symptoms. That being said, some people do better with the added fiber. It really is a... [ more ]
Becca67 Hi Stephanie, I am pretty new to this site and I hope this isn't too long winded as I tend to ramble. I am about 3 months post take down and struggled so much up until about 2 weeks ago. I was at my wits end. I was averaging about 15-20 bowel movements a day. Suffered terribly from constant spasms that would incapcitate me for hours. I wont even mention how irritated my rectum became. I had tons of gas that seemed to irritate everything no matter what I ate or used to avoid it and didn't... [ more ]
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J-Pouch ForumsHelp! Need advice now!
In search of good nutritionist in NYC NJ area
JakesmomJakesmom
Jakesmom Thank you All! [ more ]
vstRN I was also going to suggest Colleen Webb at NYP. She is great although I agree, she may just see established patients. [ more ]
liz11 Awhile back, when I was struggling with nutrition, dehydration, malnourishment, weightloss, anemia... I found an internist who specialized in nutrition issues for IBD patients. She worked in the IBD center with other IBD GI doctors. I had tried nutritionists and registered dietitians in the past but they never really seemed to understand the limitation of people with missing body parts! This particular doctor I had.. truly turned my life around for me at the time. She is not in your area,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Skin Irritation
L LisaB827
Becca67 Hi there...When I had my ileostomy I struggled for the first couple of months with maintaining a good seal. Sometimes had to change the appliance 2-3 times in a day because of leaks. Unfortunately for me the placement of my stoma ended up being in a weird place, my stoma retracted and I was also in competition with a wound infection that was right next to my stoma site that would drain and compromise the seal on my ostomy appliance. I met with the wound clinic and ostomy nurses and had to... [ more ]
CTBarrister I went through the same thing as far as skin irritation. I changed the appliance every day and could never get a good seal for whatever reason. I ended up with a yeast infection. My recommendation would be to see one of the ostomy nurses at Mount Sinai Hospital. They are the best. They can possibly help you on strategies for a good seal. They could seal me for a week. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain at stoma site - 7 mos post-takedown
B BethT
TE Marie I have pain there on and off all the time and think, in my case, there must be a narrowing in the part of my small intestine they "looped" for my temp ileo. Know one had told me this, just my overactive imagination/imaging. I also have adhesion pain there and other abdominal places. I've had 5 abdominal surgeries so had some adhesions going in for my j-pouch surgeries. I have not been very active since my surgeries so I guess you might have pulled something in a weakened area that might just... [ more ]
kathy smith I'm wondering if it could be adhesions. If so, you could see a therapist familiar with myofascial release . Sometimes surgery is performed but if one is prone to forming adhesions, more adhesions could form from the surgery. Sort of a viscious circle. kathy [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bitchin about (Narcotic-induced) Itchin
KelseyHey2308KelseyHey2308
Jan Dollar Too bad they did not take pictures and just have the plastics guy look at that, and maybe save some time, since this would just be looky-loo. I am flabbergasted that your choices were either the surgeon you never want to see again or someone who doesn't actually do surgery!? You'd think you were in the middle of nowhere. The twilight sedation thing doesn't sound wrong. But, if this is turning into a plastic surgery thing, then I guess you are sort of stuck. Maybe you need to move to... [ more ]
liz11 Well a few months ago my local gi discussed taking over the wound care. I brought it up with shen and remzi. And he discussed it with them directly at the big conference in december. I was all for it until we found out he wanted me in there once a week under twilight sedation and he would be doing it but with a surgeon present. Turns out the "surgeon present" would have been the guy who built my original jpouch wrong or a non-colorectal guy who didnt really do surgeries but was more of an... [ more ]
Jan Dollar I agree with your husband. The guys at the top have no idea what is going on in the trenches unless somebody gives them a clue. One of the problems with big institutions, it is easy to fall through the cracks. Those folks assigned with fielding phone calls are pretty much limited by the marching orders they are given. They often do not have access (or time) to research the medical record. So, again, it falls to the attending physician to leave clear notes for everyone, the patient, the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hernias?
B Bethie
Jan Dollar Sometimes hernias can be sneaky, but they usually are pretty straight forward to diagnose. If she holds her breath and bears down, there should be a fairly obvious bulge that is visible or palpable if you hold your hand over it. Often, hernias do not cause pain, so pain is not a primary symptom. Abdominal pain can be caused by a variety of things. It could be she pulled a muscle during her workout (happens to the best of us). It is not uncommon for folks to get a bit too aggressive in their... [ more ]
Bethie Thank you both for the info - I didn't want to walk into the doctors office without some prior information; as it turns out he doesn't think it's a hernia, he felt absolutely nothing, although if it continues to hurt she will eventually go for an MRI - she stopped working out because she was in pain...more than likely she was using too much weight in her workouts. not a bad problem to have after everything else!! [ more ]
Jan Dollar I had an incisional hernia that cropped up a few months post op. I ignored it at first because I did't want to deal with it, because I had to deal with other complications. I brought it up to my surgeon about a year post op. He gave me the option to repair it or live with it, and I chose to repair it. It was elective because there was no entrapped bowel causing pain. It was a simple repair, but did require mesh and an overnight stay. I was up to my usual routine the day after discharge. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgery decisions...
M musicmaker516
Pluot When you meet with Dr. Butler, ask if he can put you in contact with any of his former j-pouch patients so you can talk about their experiences. [ more ]
musicmaker516 Thanks for the input - After much research on reviews, consideration of convenience, insurance coverage options (which are few since it's Fidelis NY Catholic Health Care for low income families)- my husband and I decided to meet with Dr. Brian Butler in Buffalo. He has great reviews and the other surgeons in his group are recommended (though not participating in Fidelis. This is still a 2 hour one way trip, but will be easier for my 4 year old and husband. Anyone have experience with this... [ more ]
liz11 As someone who has had extremely bad experiences with pittsburgh hospitals - both of the major ones, and two of the "top" colorectal surgeons in pittsburgh, i highly recommend you call cleveland clinic yourself and check on their insurance coverage. You might be surprised. Cleveland clinic seems to take a lot of different insurances from all over the country. [ more ]
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J-Pouch ForumsHelp! Need advice now!
jpouch hell
MR Mike ryan
Donna H Mike, You are right when you say j-pouch hell. I, too, went through hell and I wanted to die. There is nothing worse than living on the toilet. It is painful, depressing and exhausting and I feel so sorry for you. Have you ever tried Pepto Bismol? It is safe and it has given me such relief, acting like an antibiotic. It cannot hurt to give it a try - maybe one in am and one in pm. I do not think your doctor would object - none of mine did and I have seen too many to count. You have my... [ more ]
Mark N I am 7 years out and I finally have the system to get me to 7 or so BMs a day. I eat only 2 meals, avoid fiber and gassy stuff like beans and hot food (no esy here in Louth Louisiana!). I take lopromide after meals and codein at night. As long as I don't eat I am fine. I find I go 3 or 4 times after each meal so I plan accordingly. I have also found that liquid meals like Ensure or Ensure with Yoghurt and maybe a banana only take one or two BMs so I eat that kind of meal if I am away from... [ more ]
liz11 Mike you might want to try the loperamide exactly 30minutes before meals and then right before you go to bed. If that doesn't make a difference, pouchitis might be suspected. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blockage/obstruction pain
B bratcat
bratcat I have had blockages in the past, but they usually cleared up on their own in 12-18 hours. I definitely agree that some of the pain was part of the dehydration. [ more ]
BethT Part of your pain could have actually been caused by the dehydration. I ended up dehydrated the first day I returned home from the hospital after surgery #1, and it felt like my kidneys were on fire, not to mention the all-over weakness and soreness. Glad all is well! [ more ]
TE Marie Great News! Thanks for updating us. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain in the butt!
L Laurarose
Space-baby Hi Laurarose, if you're in Berlin, I can recommend a top GI. [ more ]
kathy smith It sounds like it could possibly be a partial blockage. If so, then you'd probably want to stop eating solid foods. Drink warm liquids, move around as much as you can, take warm baths, get on your hands and knees and have someone grasp your hips and whip them from side to side, do a headstand (reverse gravity). I have resorted to jumping up and down to try to dislodge a blockage or making myself throw up. Try not to take pain medications because they can make things worse. If you completely... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blood last night....???
DN D. Nocerino
TE Marie It could be nothing or a little broken blood vessel or something worse like cuffitis or fissures. If your trips to the loo have increased and/or you have any burning right inside the back door you might want to check it out. That's what led me to my cuffitis diagnoses - blood. [ more ]
kathy smith Blood sometimes happens. If it occurs once-in-a-while there is probably absolutely no reason to worry. Those blood vessels in that area bleed quite easily. I've had bleeding for several days in a row and then it magically goes away. But if you're very worried, give your doctor a call. kathy [ more ]
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J-Pouch ForumsHelp! Need advice now!
Son sleeps too much ...
L LilMoe03
TE Marie Is he old enough for school? His body might be in repair mode from all of his former problems. He also might be anemic or low on B12, or something else. Has he had a recent blood test testing for these plus vit. D? [ more ]
Subzeromambo Check the side effects of his anxiety and depression meds. Some of them can make some people very sleepy. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I need a good cry and wondering what is up with me.
K Kia
skn69 Kia, I lived in a world where people didn't go to therapy although I did have a couple of very negative experiences with a psy when I was very young (everything was about sex for him...I was worried about infertility, he said that I needed sex, I was worried about incontinence, he said I needed anal sex...I was 14 at the time but intelligent enough to dump him rather quickly..)I don't do well with Freudians...I tried group thereapy at the Sick kids hospital after that...the problem was less... [ more ]
clouseau Sharon, How amazingly strong you are! I got goose bumps reading your story. Kia, We are all wishing you the best and yes this forum really helps so much. I just wish there was more I could do in return. I am astonished how knowledgeable so many of you are espectially Jan. I must admit I never thought I would be part of an internet based group and this and my lymphoma web based group have made a world of difference to me. Thank you. [ more ]
TE Marie I didn't see why we had to go back to the past and thought I'd dealt with it all. I was helped by doing it and remembered details I didn't even know I would remember. It's like digging it up from your subconscious brain, dealing with it now and filing it in the conscious vs letting it stay and fester underneath. That's how my therapist explained it to me. I tried EMDR as my step-sister suggested I needed that therapy. I am now a believer. The initials don't describe how the therapy has... [ more ]
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J-Pouch ForumsHelp! Need advice now!
NEW J POUCH FOR WIFE - POORLY..NEED HELP
S seen
AP Every time I feel as though I have to go and know that I don't have to, I take a glass of water with psyllium fiber added to it. I don't why it works, but it does. It takes away the feeling and makes my stools more formed. Anything is worth a try, right? Good luck. I had a hellish time for six months and now have had a successful seven so far. [ more ]
hever I've been taking 8 panadeine forte daily, just had the liver test repeated and its stable so just gonna carry on for now.Its because of the paracetamol part I think that I keep having to have liver tests. None of the other meds worked on me, had them all by the truck load.How's your wife feeling now, any better? Tell her not to get depressed, it can take a while for the body to adjust to the pouch, not the miracle take over the specialists believe, Heather [ more ]
tammykathleen Seen, I am just reading your posts and since your last post was over a week ago, you may have already taken your wife to the ER (AE). Is she feeling any better? ~Tammy [ more ]
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J-Pouch ForumsHelp! Need advice now!
Worried about getting end ileo
I ISeeUC
chiromancer Glad to here it worked out for you. I also have been very happy with my pouch excision and end ileo done in mid Dec. Have regained most of my strength and energy. It is great not to have to deal with the poor functioning pouch. [ more ]
JillM Woot Woot! Good for you. Glad you are doing well. Wait till you are 6 months out, you won't believe how good you feel! [ more ]
n/a Yes - thank you for posting your positive update, ISeeUC - so glad to hear you are doing well! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Normal discharge post colectomy or is this UC flare?
P Pluot
Pluot Thanks guys! I had some mucus with a little blood in the morning two days in a row but nothing since then... fingers crossed [ more ]
dawn58 Totally normal [ more ]
beucfree It is normal, but too much blood could be of concern. Since you got cold so close to your surgery and if you were heavily sneezing and coughing, you may want to call into your surgeon to make sure all is okay. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Surgery Scheduled in 1 month
MO Mike O
Mike O Thanks UC Warrior, very helpful post. Best of luck to you in your recovery. [ more ]
Rick822 Have you checked into Fecal Microbiota transplant. It may save the colon. [ more ]
UCWarrior2010 I am in the process of getting a j-pouch. I had the first of my two surgeries that involved creating the j-pouch and a temporary loop ileostomy about 3 weeks back. Though I am still recovering from the surgery, which by the way is a very major surgery. Slowly I am gaining my strength and stamina back and the pains/aches are subsiding. But, I can tell you I am already feeling better than I have felt in years. I only had UC for 2.5 years but those 2.5 years were brutal. I never went into... [ more ]
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J-Pouch ForumsHelp! Need advice now!
help, i need more farts....
stephalynndstephalynnd
Jan Dollar Guess I am lucky. All I have to do is sit on the toilet and kabooooom! Jan [ more ]
Txgal58 Oh my gosh, where else can you get advise on how to pass gas! For me, I have to either lay on my stomach, sometimes using a small rolled towel under my abdomen, or leaning over my knees when having a BM. [ more ]
mom2panda I don't have any experience with this problem, but I've heard that many find lying on your stomach helps, and some lift the butt up a bit which also helps. Hope you can get them out soon! [ more ]
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J-Pouch ForumsHelp! Need advice now!
concern over long term cipro usage
J jeane
TE Marie Or he is scared you are going to sue him over the surgeries he performed. I'm jaded these days. Where I live you have 2 years from when you "should have known" to sue and weren't your surgeries around 2 years ago? It is common curtsy for his office to contact you and tell you some reason why he's not responding. After all you paid him because he doesn't accept your insurance, I would be incensed! Sorry jeane, I'm always cranky these days. I know he is a good surgeon, that is why his behavior... [ more ]
jeane This is interesting Liz as my current surgeon has pretty much left me in the lurch after he suggested the pouch advancement and I moved to a new GI and obtained a SSO at Cleveland. Since then I tried to contact him twice through email and he did respond to some of my questions (after almost three weeks) and addiotnal requests, but has not responded via a request for a phone conversation after saying he would try and get in touch to talk. So after that email, I have decided to move on from... [ more ]
TE Marie There is a fellow j-poucher that had a fecal transplant and it took a month or so but was successful at treating his c-diff. It's been discussed with my Mayo GI. I haven't heard of it curing UC but maybe I could get a 2 for 1 out of it. Get rid of cuffitis and c-diff at the same time...... It is not a routine treatment. Antibiotics were not working on his c-diff at all. Mine usually goes away but takes longer dosage time than the usual 10 days. [ more ]
See all 20 replies...
J-Pouch ForumsHelp! Need advice now!
Dysfunctional Ilestomy
GoHeels23GoHeels23
Spooky Same here; I have never heard that term. It sounds like an obstruction with possible paralytic ileus (i.e. waiting for function to return). A dysfunctional ileostomy, at least to me, would imply some sort of structural problem preventing it from working, and would seem like a very different and potentially more long term problem. Can you ask the surgeon for clarification so you know exactly what you are dealing with? [ more ]
JillM Never heard that term but sounds like an obstruction to me.... [ more ]
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J-Pouch ForumsHelp! Need advice now!
after defunction of j pouch and new stoma losing horriible discharge
K kennyboy
chiromancer There is only one cure for this and it is J pouch excision. I tried several of the suggested treatments and they didnt work, try them maybe you will get lucky. The excretions kept getting worse and worse, mine had little smell and usually just a light tinge of red but it was obnoxious because they leaked out. They started off as thicker but got more and more watery. I had some of this leakage with my loop but with the disconnected J pouch it was much worse. I figured at some point I would... [ more ]
liz11 I had diversion pouchitis too before the jpouch was ever connected but it was nothing like what it was after the jpouch got disconnected. That was horrid and extremely painful. kenny.. I had to get the SCFA enemas from a "compounding pharmacy." I have the recipe somewhere let me know if you need it. And Rowasa in the US is just standard ulcerative colitis mesalamine enemas. So I imagine that is readily available in UK, maybe under a different name though. [ more ]
jeane I had this with my temp ostomy. It may clear itself up after a few days. Call your surgeon to confirm. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
gas pains
P pinky56
Kia Oh yes, ditto Scott. The crazy thing about all this is there are no hard-fast rules. The bowel has a mind of its own and what works for one, doesn't work for someone else. It's all experimentation. Hey, Scott, I see you are in Towson. Small world! We lived in Bel Air for years. Went to a huge church in Towson....can't remember the name of it, though. [ more ]
Scott F Right side vs. left side presumes the anatomy you were born with. Since our insides are going every which way after surgery (somewhat different for each of us), it's best to just see what works for you. [ more ]
Kia Contrary to Holly, I've found laying on my left side with legs drawn up is very helpful. In fact, I've read many times before that laying on your left side is helpful, in general, with gas pains. I've suggested it to many people and they have found the same. Not sure why that is. Two days out, the gas is very normal. It was the worst part for me, too. Maybe ask your docs if you can take anything yet to help with the gas? I definitely wouldn't take anything without asking first since you are... [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
keeping the rectum or J-pouch; what would you choose?
I Ikh
hever Thnaks Kathy and Ikh, sorry haven't answered, we had a cyclone here and net/phones have been out for 2 weeks. My op was cancelled cos I accidentally ate some of hubby's lunch without thinking when I was making it in the morning, haha!! Oh well, now its this Thursday 14th Feb, bit worried cos been having alot of pain and bleeding last week, oh well, no doubt I'll find out soon enough whats happening. I hate the enimas, and nothing happens anyway so I don't know why they do it, I asked the... [ more ]
Ikh best wishes, heather! [ more ]
kathy smith All the very, very best Heather. I hope everything gets sorted out exactly perfectly. kathy [ more ]
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J-Pouch ForumsHelp! Need advice now!
Highly concerned from bloody bowel movement
C Cckm04
TE Marie I had a big stool of blood, one time, that scared me. A few days later my surgeon diagnosed cuffitis. That was all the blood I saw before the diagnosis. I've never seen that much blood again but am treating cuffitis every time I feel it coming on. So it could be cuffitis which is what is contributing to your rectum feeling tender. Also corn is hard to digest. When I even have a little of it and think I've chewed chewed chewed, it still does not get digested. Jan is probably right but when I... [ more ]
Cckm04 Thank You. Still no blood, but muscle just under the rectum still "feels" tender when it times to have bowel movement. Chewing things well and eating this that will "mush" seem to be better. Perhaps the "hole out" is shrinking or has shrunk? [ more ]
Jan Dollar Well, since this was just a blip, then I doubt it was cuffitis (as like UC- tends to linger and simmer or really rev up). More than likely, you probably just popped a little blood vessel. I know it seemed like a LOT, but if it was anything other than a tiny thing, you would have bled much more, freaked out and either hemorrhaged, or ran to the ER for treatment. These tiny bleeds just stop on their own and leave everyone with a big question mark over their heads. Strictures don't just go... [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Blood after BMs
JD Jeff D
TE Marie I suggest you install a sprayer, if you don't have a bidet. We ordered a $50 kit from Diabetes & More and it took my husband 10 minutes to install it. I spray clean every time and "dab" with Charmin Ultra Soft to dry. Sometimes I use Witch Hazel on TP or a cotton ball too. It is the main ingredient in prep H. BUT you don't want to use it if you have broken skin as it has some alcohol. Please DAB vs wipe too. Sitz baths are great too. That said you could have hemorrhoids or broken skin or... [ more ]
BarbieG Do you think u might have a hemorrhoid? I get them often & sometime they bleed. They r caused from straining when you go. I find Prep H helps. http://www.webmd.com/a-to-z-gu...hoids-topic-overview [ more ]
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J-Pouch ForumsHelp! Need advice now!
Symptoms of Crohn's disease after J-Pouch surgery for UC
R russell3
JJA Sounds like pouchitis to me. [ more ]
russell3 Thanks! No, I haven't been evaluated. I haven't had any big issues with my pouch in the past. I have night time leakage from time to time and once in awhile I get butt burn. I've never had pouchitis, to my knowledge so I'm not familiar with the symptoms. This is the first time I have had pain and I just feel so bad all over. I guess it is time to make a call to my doctor. [ more ]
CTBarrister I was thinking the same thing as Scott F, it sounds like pouchitis and should be evaluated. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Painful CT
S Subzeromambo
Subzeromambo It is four days later and I am still pain free. I have another scope scheduled for the 7th. Bms have doubled but it is sooooo nice not to have pain! [ more ]
CTBarrister It's called volumen, which is a barium sulfate suspension, and the test is called a CT Enterography. It should not cause abdominal pain in the normal course. [ more ]
liz11 So you had the iv contrAst? Right? Seems like you you might have had a reaction to the contrast. You need to speak to your doctor about this so you know for the future. Also sometimes for me that barium junk you drink seems to clean out the gut, gets things moving, resolves partial obstructions. Wonder if maybe that is why you feel better? [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Night time frequency
R RichnhisHarely
Scott F Since this is a change for you, you should be assessed for possible pouchitis or other development. For many folks a course of antibiotics (e.g. Cipro) is sufficient to make it go away. I found that VSL #3 kept it under control for a couple of years. Some docs will treat based on history, while others will want to take a look through a scope first. [ more ]
RichnhisHarely I currently take at least 8 lomotil a day taking two before bedtime. Things just don't seem to work as they used to. Thanks for any advice Richard [ more ]
Megan I take Gas-X with my last meal and that usually helps me with gas at night... What meds do you take at night? I do 2 lomotil at night and that seems to keep things to about 1 bm a night for me. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Sexual dysfunction
L lol?
Dog Same here. . .took me several weeks to return to my, uhh, peak form. [ more ]
Scott F It took me weeks after surgery to get my groove back. I was nervous for a while, but it turned out fine. [ more ]
Jan Dollar The fact there was function immediately post op would lead me to believe this is temporary, and likely due to post op swelling and bleeding at is causing nerve trauma. Hope that is some consolation... Jan [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Takedown and traveling
P pinky56
Jan Dollar I think the idea is that you plan for having a rocky time and not for best case scenario. In particular, you do not want to set yourself up for trauma and stress. Maybe you won't be ready for lifting boxes and the stress of a new environment less than two months out from takedown. Sometimes complications occur and you wind up in the hospital for weeks, instead of days. If you plan a schedule where you do not have contingencies, it could be a problem. Better to be sitting there thinking, "I... [ more ]
pinky56 Thanks Sue! She was conserned if I wanted to make this move earlier than April. Mostly blood clots from sitting for too long. Having to go to the bathroom frequatly ( I am already prepared that I will have to wear "female briefs"! Losts of butt cream also. But I would like to get advice for people that have actually gone thro this. [ more ]
suebear Barring no complications, this seems perfectly reasonable to me. Did you surgeon elaborate on why he/she did not think this was a good idea? Heck, I returned to work at 3 weeks and went camping six weeks after surgery! It sounds as if you have given this a lot of thought; I think you will be fine. Sue [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Antibiotic dependant pouchitis
D dibelljw
jeane Dibell, Just a note that the second time I tried xifaxin I did not have the constant diarrhea. Cipro alone just seems to work for me to the point of slowing my pouch output down to a max of four times within 24 hours. It's heaven as I feel like a person with a colon again but the constipation aggravates my stricture issues. I have backed down to 250 mg X 2 at present and will soon be trying to get off antibiotics for a month or so reprieve if I can. As CT mentioned it is a lot if trial and... [ more ]
CTBarrister I have had no side effects with any of the antibiotics I have taken, except a yeast infection from staying on cipro too long and failing to rotate. Cipro photosensitizes the skin but that simply means you put sunblock on when you go out in the sun. It would seem that the tolerance level of any antibiotic varies by the individual, and trial and error must be applied as to the type and dosage of antibiotic. Mine is high across the board which is a good thing as I have needed to treat pouchitis... [ more ]
dibelljw I do wonder if rifaximin would work better as a drug to maintain remission instead of as one trying to gain remission.. [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
Can us Jpouchers take the antibiotic Cephalexin (generic Keflex)?
Mhg26Mhg26
Jan Dollar Re: the sinus infection I don't get it that you cannot see a primary doctor for several weeks if you think you have a sinus infection. You should be able to get an urgent care appointment, even if it is not with your regular doctor, within a day or two. These sorts of things are not just a cold, unless you don't have the symptoms. You really don't know if Keflex is the right antibiotic for your problem. I would try calling back and asking for an urgent care appointment. Litmatla: have you... [ more ]
lilmatla I recently have been having gas, flatulence. I had pouchitis in August of 2012 and really have not had the same bowel movements since. I have not felt the same either. The Cipro completely constipated me terribly and I think that is what did me in. I now have hemmroids on the outside the GI tells me. They bleed sometimes and now this gas....and bloating. This has been going on for about 3 weeks.I am totally confused on what to eat and/or do. Too new to me. [ more ]
AllyKat Ditto what Connie said and yes I have taken It for sinus infections. Sonetimes you might need to take it fr 20 days. Oh, and lots of probiotics to ward off c diff. Latley have been given leveguin or bratrim cause they r less likely to cause c diff a d upset your intestines. [ more ]
See all 4 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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