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J-Pouch ForumsHelp! Need advice now!
GI or Colon rectal surgeon
K kk
Jan Dollar True and false. True that a GI does not make j-pouches. But false that he cannot know enough to treat them. A GI is trained in medical management and might be more apt to consider a variety of treatments. It all depends on how well the surgeon and/or the GI stay up to date. It seems rather arrogant of a surgeon to assume he is the only qualified provider. That said, yes, many GIs are not well informed about j-pouches. Why is that? Also, many surgeons do not seem interested in maintenance... [ more ]
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J-Pouch ForumsHelp! Need advice now!
completed 1st,2nd step for pain/breakout/whats next
K kk
Jan Dollar Yeah, we walk a fine line sometimes. Partly because we are sick of seeing doctors, and partly because we can worry about being perceived as hypochondriacs. Not likely, since we have so many things go haywire. Half the time I wish I WAS a hypochondriac, rather than have these things going wrong with me! Sometimes waiting pays off and whatever it is goes away. Other times, not so much, and I wind up at the doctor's office or worse (the ER). Jan [ more ]
kk Thanks Jan. Thank goodness I do have a high tolerance to pain so I am not one to have something going on/start thinking what is wrong with me. That is why w/bowel obstruction I suffered for a wk/dealing with it thinking it was a virus. Then after being put in hospital after going back/forth to doctor and what they were doing was not getting me anywhere I finally said I don't know what but something different needs to happen. Even after hospitalized did not get better/got in worse shape/asked... [ more ]
Jan Dollar I do understand. Sometimes we have to just let the focus be off of us for a change, as long as we know that nothing serious or dangerous is going on. I can handle pain, as long as I know that I am not making myself worse. There have been a number of things like unexplained pain or rashes that I just have to chalk up to a big question mark. So, I just plan my life and expect things to work out. Sometimes I get blindsided, but usually not. Jan [ more ]
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J-Pouch ForumsPouchitis
Is anyone here using fecal transplant for pouchitis or Chrons?
L Lineal
AllyKat I got a good book about FT from Amazon. Called the FT guidebook, lol. Anyway, I'm all set to go as soon S I finished up my antibiotic. I am also a bit nervous. Good luck I hope it works fir both of us and anyone else venturing into the unknown [ more ]
desisn00ps Hi Guys, Anyone have any further remarks about trying out fecal transplant with a j-pouch? I'm considering it for repeat C diff.. [ more ]
AllyKat Did u do the transplant at home and how did u do it? Did ur donor get tested? Thanks looking to do it [ more ]
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J-Pouch ForumsOstomy & Skin
What's this burning sensation?
R rabbit81586
rabbit81586 Thanks, Poucher. So according to my WOCN, I'm cleaning my area a little too good and might be aggravating the skin that touches the stoma. It could also be the adhesive remover wipes. So the solution is to not scrub the area and to not use the adhesive remover wipes so close to the stoma. Also, I need to cut my wafers a bit bigger. Luckily its not any type of infection so hopefully these simple things will clear it up in a few days. [ more ]
PoucherInTO Heya Rabbit! Nice to see you over here Let me know what your doctor thinks! Also sometimes it's worth posting questions about ostomies under the "General Discussion" board (since most jpouchers had an ileo at some point, it's worth posting there). Many people don't scroll down all way to the "Ostomies" board but are happy to offer advice and suggestions. Have a great day! [ more ]
rabbit81586 Thanks off the response but I shave with an electric trimmer Everytime I change my setup so I avoid that. I go see my doctor tomorrow and I have a call out to my WOCN. I'll post what they tell me. [ more ]
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J-Pouch ForumsGeneral Discussion
VSL 3
OZOZ
Pluot I did a very small dose (like 1 tsp of the powder in water) for a few weeks. Never did anything but give me incredible amounts of gas. I've since gone on Florastor and Culturelle instead without the bad side effects. As Jan said, VSL just doesn't agree with some people. [ more ]
Jan Dollar Many people cannot take the full dose right away, but need to start out with a much smaller dose and gradually work up to a therapeutic dose. Some never tolerate it at any dose and it just consistently makes things worse. Nothing is effective or even benign to everyone. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Gastroenterology Dr. in NJ/NY
DingiDingi
Pluot IBD Center at Cornell is great if you're willing to go to NYC. 212-746-5077. [ more ]
mgmt10 Where in NJ are you? My GI doc is in Philly and she's great. Knowledgable with j pouches too. [ more ]
Dingi Jan that is the problem. I went to ER about a week ago and the dr asked for stool sample then. I was not able to provide any as I had nothing in my system. I went to Dr. on Tuesday and he didnt mention anything about it. I called him yesterday as I am still not feeling better and he said oh so you are on so and so medication and we did yout stool work and all. I am like no, we did not. But he still didn't give me any prescription. I called him again right now and asked for prescription. Just... [ more ]
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J-Pouch ForumsGeneral Discussion
How normal -small stomach aches often?
BM boy's mom
Jan Dollar Gee, I think it all depends on what you describe as a stomach ache. I get mild to moderate crampy/gassy feelings off and on all the time, but I would not call them "stomach aches" because I know that they are just my gut churning. Usually it is not an issue, but sometimes it is more pronounced to me. People with IBS are extremely sensitive to what is going on in their gut, so they perceive quite a bit of normal activity as a stomach ache. Plus, when you are dealing with kids, it is hard to... [ more ]
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J-Pouch ForumsGeneral Discussion
1 Month since Proctocolectomy (surgery #1)
U UCinCharleston
UCinCharleston Thanks guys. I've got an exam scheduled in a month to determine how the pouch is healing, if everything checks out, I should have take-down surgery within two months from now. [ more ]
aka KNKLHEAD Nice write-up! Congratulations and best wishes. [ more ]
Jan Dollar Sounds like you are doing great! The biggest hurdle is "getting over yourself," basically accepting that it is OK to let go of what you thought was normal. I feel that normal is being healthy and happy. How you get there does not matter. It is not too uncommon to find early cancer in colectomy specimens with long standing UC. That is why docs get nervous as you approach 20 years. They can't biopsy the whole organ without removing it... With your attitude, you should do well. There will be... [ more ]
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J-Pouch ForumsGeneral Discussion
I can't hold my poop :((((
BebeksporBebekspor
Bebekspor It is definitely getting better! I have accidents maybe every other day or every few days now (as opposed to three a day). I've tried the cotton ball technique and I love it! I use it at night especially, it helps. Taking Imodium, lotomil, Metamucil, but still going 10-13 times a day, mostly in the evenings and throughout the night and early morning. I still wear diapers at night just in case :/ [ more ]
JW280 Hi Bebe, Tomorrow I will be 3 weeks out of my takedown. I've been feeling good physically but I've had some trouble adapting to my "new normal". After the takedown I was having 20 plus BM's a day then about 3 days after I went down to 19 then 18 then 17. I'm having about 12-15 now. However, now I'm having leakage too. I feel a BM coming and if I'm not right around a bathroom I try to hold it but some WILL leak out. Sometimes more than others. I've been putting a cotton ball right on my anus... [ more ]
Indy_Dave its gonna get better - might take a few months or so...for me it was about a year. After five years I still go 10-15 times in a 24 hour period. Still better than having UC and the pain that came with it.... work on diet - stay away from: greasy foods - even fried eggs sugar cinnamon hard to digest fruits n veggies/citrus juices use a n d ointment and wash your butt as often as you can to help with butt burn. hand held in shower is a must... Praying helps too good luck [ more ]
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J-Pouch ForumsHelp! Need advice now!
CDIFF! AGAIN!!
Lindsay~n~SDLindsay~n~SD
desisn00ps Can you please consider fecal transplant either locally or in NYC or Cleveland Clinic? I've heard about amazing results and this might just do the trick for you. [ more ]
BENNO__64 Ok, thanks Rebecca. [ more ]
TE Marie Sorry, I omitted that I took at least 5 courses of Flagyl to finally get over my c.diff. I was discussing it on a different thread and thought I'd talked about it here too. I edited my above post. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Are these really the effects of a block?
K Kris1979
ElmerFudd Hard to say, really. A blockage will cause pain, increasing in frequency and intensity - so if that was what it felt like, that's probably what it was. Getting that NG tube is kind of a last-resort but usually brings relief. Not surprising your CT and x-ray didn't show a blockage. They are hard to see on x-ray. If you had happened to drink a bunch of barium and then had your x-ray when it happened, it would have been visible if there was a problem. That is why often doctors will schedule you... [ more ]
Scott F Others can share their experiences, but of course this isn't normal. The key questions to pursue, I think (though you might not get satisfactory answers) are 1) what caused it, and 2) is it likely to recur? It might just be a one-time thing, whatever caused it. I hope so. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain at stoma site
D Dj77
ElmerFudd At four months, that site can still be a little tender. And given the adhesions that are probably there (even if they aren't causing any blockages), when he moves it pulls on the already-sore area. So I'm not that surprised. The pain around my stoma site has lessened over the years so I really don't notice it at all. Steve [ more ]
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J-Pouch ForumsHelp! Need advice now!
Remecade IV? Worth the scary risks?
L LorieSly
ElmerFudd Sounds to me like the surgeon wants the inflammation in the rectum down prior to surgery to make the anastomosis (connection of j-pouch to the rectal cuff). Severe inflammation could make the rectal cuff more prone to bleed, harder to work with, etc. After my surgery, my surgeon's associate visited and said my "path" (pathology) was not typical. I had a LOT of inflammation in my rectum and he asked if I had been having trouble prior to surgery. My surgeon has a real issue with steroids... [ more ]
Jan Dollar If it helps, this article indicates that using Remicade before surgery does not increase surgical risks. http://onlinelibrary.wiley.com...7d34c94dbd6f056ad94a Jan [ more ]
LorieSly I appreciate your taking the time to reply and encourage. Time will tell if this treatment will reduce inflammation enough for surgery. We will scope after two to see if we need a third or more. Hopefully not. Again, thanks! [ more ]
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J-Pouch ForumsGeneral Discussion
How long is recovery?
W wsh6745
wsh6745 Thanks everyone. All of my bloodwork came back normal so I am not anemic. The dizziness is still present but seems to be getting better. I am trying to take Jan's advice not to drink water (or anything) too quickly but I am so thirsty all of the time that I find myself drinking faster than I probably should. Thank you to everyone. [ more ]
Rocket I drink Propel Zero. That is Sugar Free and has Potossium and is also Low in Sodium. I think Nestles Water has flavored water but I do not know if they include Sugar. Propel Zero has Zero Calories and 6 Vitimins to Energize. Just take things really slow. I for instances wish I could make smoothies but they give me the trots so if you do have that, make a small portion to see how your body reacts to that. As one person posted, eat small meals. Rocket [ more ]
Scott F I agree with what Jan wrote, with one friendly amendment: some of us do just fine slamming back a full glass of water. If you prefer to try that, just pay attention to how your body responds, and back off if it doesn't agree with you. [ more ]
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J-Pouch ForumsPouchitis
Question about colds and Pouchitis
D Dbone
clz81 Have you been on the Cipro for most of these past 2 years? If so, I would say this has little to do with the cold and that the Cipro is just not working for you anymore. If you've only just started using the Cipro or have only used it a few times, then disregard. [ more ]
Dbone Ive had to stay on cipro unfortunatly but it seems to help . But this is kicking my butt , no pun intended . Im going to call my GI and see him . But im fianlly cold free so maybe i have to be patient with the cipro . Im on the smaller of the two milligrams , Ive doubled up on them because this is so bad , im constantly fighting dehydration [ more ]
jeane I just recently experienced this. I was off cipro for about two months and then came down with an awful head/chest cold and sore throat and whammoo pouchitis in full force. It took about two weeks until cold cleared and about that time on cipro. I will be weaning off cipro in next week hoping the cold just pushed me back into pouchitis gear. Seems any time run down and susceptible to pouchitis, everything gets off kilter and pouch unpleasantly reacts. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Lack of feeling - urination and rectum
W wsh6745
wsh6745 Thanks CeeeeCeee - this makes me pretty nervous. Since it takes effort but I am able to go - I think your post is saying I should give it a couple of months to see if it resolves, or if it gets any worse, go to my doctor and ask about the self catheters. Did that hurt to do? [ more ]
CeeeeCeeee I had complete urinary retention after Step 1. I've met others who have also experienced this. I saw a urologist. He set me up with an ET nurse who taught me how to self catheterize. What a relief that was! Every 4 hours or so I'd empty my bladder by self catheterization. I began appreciating not having to wait in line for bathrooms while keeping my legs crossed. The urologist told me to try to urinate naturally a little bit before self catheterizing. He had me measure my output and liquid... [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch since 1981
F 5151flyer
wsh6745 S-Pouch: I also have an S-Pouch but only since Jan 24, 2014. How have you done with your S-Pouch over the years? How many BM's do you have daily or during the night? I have been told that the S-Pouch is supposed to have slightly more capacity than a J-Pouch so am just wondering if this is the case with you. Thank you, Wendy [ more ]
spouch Hi I have had my s pouch since october 1981. Its like a J pouch but uses 3 loops of ileum where a J pouch only uses 2 but the idea is the same. Regards. John From Australia. [ more ]
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J-Pouch ForumsGeneral Discussion
Frustrated, but don't want to give up yet....
K KeepFighting(Manny)
KeepFighting(Manny) I have an MRI coming up in a little over a week, hopefully that will provide some answers. Thanks for all the information Jan, you are an awesome encyclopedia of knowledge as usual. I will keep everyone posted on what the end result is. Have a great day. [ more ]
Jan Dollar You diagnose by exclusion. That means you rule out other causes, leaving adhesions as all that is left. The only definitive diagnostic is exploratory surgery, which is also the treatment. So, basically, surgery is reserved as the last resort when your quality of life depends on it. If you are willing to live on a pureed diet, then the doctors are OK with that. If not, you need to convince your surgeon that it is unacceptable. Jan [ more ]
KeepFighting(Manny) I also neglected to mention in my prior post that I have tried an all liquid diet and noticed a significant improvement in the pain department and with the little research I just did online, It would certainly suggest an adhesion or obstruction of some sort. If this cannot be detected by imaging then how are adhesions diagnosed? I would imagine the patient wanting to know for sure that he/she has an adhesion before allowing the surgeon once again open them up. [ more ]
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J-Pouch ForumsGeneral Discussion
Almost 2 weeks with J pouch!
RB rather be camp'n
Murray Lou welcome form the other end of Hwy 17 had mine a year now I found beno worked also any type of anti diarrhea that targets gas and bloating also stay away from raw onions and cinnamon.as you recover you get it down to 6-8/24h. the but burn does go away but its never far away. [ more ]
Semi Colon Lou, I use a moist wipe. You can get Convetec Aloe Vesta foam which you apply to TP. Been using it over 10 years but don't see many others using it. But it works. Jerry [ more ]
mgmt10 Some people have posted that digestive enzymes help with gas. I've tried them but really didn't notice a difference. I find that too many carbs makes me gassy so I try to watch them. Everyone is different though. It's all trial and error. Your frequency will most likely go down over the coming weeks. Sounds like you're pretty textbook for two weeks out. Around the three or four week mark I was down to 6x a day and now I'm 4-6x a day almost four years later. I like using Calmopseptine for the... [ more ]
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J-Pouch ForumsGeneral Discussion
Scar tissue
CdubCdub
naz Isn't that a keloid scar ? Like a raised scar, that's what i immediately assumed I'm sure you can improve it, maybe not completely but i would be very skeptical of cosmetic clinics . I would look at the NHS website before doing anything. [ more ]
Cataja My original j-pouch scar was horrible...looked like Frankenstien. I needed surgery for an obstuction and the surgeon who performed it went through the original scar and it turned out waaay better then the orginal one...lucky me. [ more ]
kelleyparr I had my scars fixed a couple years after my surgery. The round stoma scar is gone, in its place is a straight, flat, very narrow scar. It looks much better, but is still not perfect by a long shot. But certainly better. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stricture/Scar Tissue/J-Pouch/NOT HAPPY!
13 Years & Counting13 Years & Counting
13 Years & Counting Glad to hear she's doing somewhat better. I really admire her determination through her illness! We had absolutely no snow yesterday!! I'll take the freezing cold over snow any day at this point! Thank you again for your good thoughts! [ more ]
beckysmom Glad to hear you are feeling better! I agree the snow for everyone is too much, but it's temporary so that is good Thank you for asking, my daughter is doing somewhat better. I wish she was finishing this year, she has 3 more to go, it's a 5 year program. I am proud of all she has accomplished! [ more ]
13 Years & Counting Beckysmom,Thank you so much for checking in! Yes, I'm done with the dilations...a total of 3. Feeling much better in my belly, not swollen & tight. Still experiencing some difficulty going to bathroom. Not sure if it's do to a lower stricture near the "exit" (which seems to be a recurring thing) or something else. I'll follow up w/ my GI doctor in NJ. Last procedure was at Carnegie Hill Endoscopy instead of the hospital. MUCH nicer experience & if I ever need to go through this again... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
38 weeks pregnant!
C C86rf
kdub I just had twins via c-section on feb 6th. I had a few issues with milk supply in the beginning but my OB attributed it to the c-section, not necessarily to dehydration or the j-pouch, etc. This article from kellymom.com states that: “It is widely assumed that milk production requires a high fluid intake on the part of the mother, yet the evidence suggests that lactating women can tolerate a considerable amount of water restriction and that supplemental fluids have little effect on milk... [ more ]
clz81 oh, and i think the supplements are actually called "more milk plus" by motherlove. [ more ]
C86rf Clz81- Thanks my body does one extreme to the other if Im not careful with how much I'm drinking. Either I get constipated because of not drinking enough or have diarrhea which makes me dehydrated because of drinking too much. I think youre right, too much dilutes my system. There's a very fine line for me. I only take metamucil and haven't had to take any medication since my take down which i'm so grateful for. I could try lamotil or something but so far im happy with the way things are... [ more ]
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J-Pouch ForumsGeneral Discussion
Any idea what's causing this
M marsipan
Jan Dollar Back passage is a UK term for anal/rectal. From the profile, it seems that this was a 2-step j-pouch. Marsipan, since you have been going along fine for 14 years without these symptoms, you probably should contact your doctor. Anytime you have new symptoms that are persistent, then it should be reported. I am not sure what would cause these new symptoms. Do you have any other symptoms than those few? Jan [ more ]
MarkGregory I have the same thing as far as the moisture goes. Not that unusual. Pressure on the intestines can cause nausea. Nothing to be concerned there either. [ more ]
aka KNKLHEAD Marsipan: It sounds like you are talking about an ostomy bag, versus a "pouch," which is internal. Do I misunderstand? Also, when you say "back passage," what are you referring to? [ more ]
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J-Pouch ForumsGeneral Discussion
Crohn's? or Stricture?
Mema 1Mema 1
Mema 1 Thank you all so much - at least now I can have a more positive outlook at least until diagnosed. [ more ]
beckysmom Yes you can have a stricture above the pouch. I don't think it always means crohns. Hopefully Jan or someone will have more information for you. In my daughter's case, with a sricture above the pouch, they did a balloon dilation (under sedation)and that opens the area up and then you see how you do after that. Each case is different. Best wishes. [ more ]
Jan Dollar Yes, stricture at the pouch inlet is the second most common type, with anal stricture most common. It does not mean Crohn's, but it might reflect chronic pouchitis. The bleeding could be from ulcers that can occur att he narrowing. These can be dilated by balloon dilation during endoscopy. Even if your diagnosis changes to Crohn's it does not mean you will go back onto prednisone. That is NOT a maintenance medication. There are other meds besides Remicade too. But, first things first. See a... [ more ]
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J-Pouch ForumsGeneral Discussion
What's wrong with me
C CaryO
kenneth29 i had the chills a fever and extreme tail bone pain and pain in the butt cheeks. after going to the ER a few times for what doctors thought was the flu i had a CT scan and they found a pelvic abscess [ more ]
Scott F This doesn't sound much like pouchitis. My first thought is the same as dtmack's - any signs of infection? [ more ]
dtmack Have they checked you for an infection or an abscess? You have many of the symptoms, especially once you come off the antibiotics. Are you getting any fevers? Have they checked your white blood cell count? [ more ]
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J-Pouch ForumsGeneral Discussion
Almost 14 years with j-pouch
P Philster
ariedl Phil and Matt, your situations seem very similar to mine: I had my surgery 12 years ago this month, and while things aren't what I was hoping for, I've gotten used to them. I was dxed with UC in 1998, and while I thought the prednisone worked great for a while, my GI doctor felt that I was "refractory" to treatment. After 2 years he suggested the surgery based on my age and the likelihood of cancer. The first step of my surgery was kind of a nightmare, as I developed an infection while still... [ more ]
Scott F Those periods of leakage could well be pouchitis episodes. They'd likely go away more quickly (*very* quickly) with a short course of antibiotics, usually Flagyl or Cipro. [ more ]
Luton Matt Thanks Phil, you sound a bit like me to be honest!! I'm twelve years in with old "pouchimus prime". Although when I got ill, everything happened very quickly and i didnt really have any options. Ive sort of blocked that whole episode out in a way, although i do remember, I've detatched myself from the emotions I had at the time. Same as you, though..I tend to get a bit of bleeding from time to time. And I too get good phases and bad phases which come and go. We now have three boys! 10, 7... [ more ]
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J-Pouch ForumsGeneral Discussion
not worth the pain anymore
pouchingtonpouchington
Cataja boy's mom...After I had the j-pouch surgery, I never got better. It was like I was still in a bad flare. Within the first 6 months the doctors at Mayo said there was a chance I had Crohns, although I always presented like UC. About 1 1/2 years in, I developed a fistula that is usually only seen in Crohns, hence the rediagnosis. I was on weekly Humira injections for the first 3 years after having my j-pouch disconnected. I have since quit those and am currently on no maintence meds. My... [ more ]
NancyD. I feel the same way you do. I've had the j-pouch for 14 years. I've been very sick in the last 7 months. I've been treated with Cipro. Was taking Flagyl this week. Gastro. Dr. doesn't know what to do. He's not familiar with j-pouches. I've come to find out most aren't. I went to my internist yesterday. He did blood work and ordered stool cultures but wants me to stop FLagyl and start cultures on Sun./Mon. Has anyone had to do this? He thinks I have a bacterial infection. He wants to know... [ more ]
Kashi You're in my thoughts as you have certainly suffered greatly. I feel a little guilty as my road since the 2-step J-pouch surgery has been a blessing. Can't say I'm not concerned about how long the thing will last but it has given me a 99% quality of life. Good luck and speedy recovery in whatever path you take - you deserve it! [ more ]
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J-Pouch ForumsGeneral Discussion
Endurance training
J jkdwyer53
jkdwyer53 Gu chomps not guess chimps, autocorrect wins again. [ more ]
jkdwyer53 Thanks for the advice and good luck on the race in South Africa, sounds really cool. I have had luck with salt stick tabs and guess chimps so I'll probably go with those. I was unaware that too much potassium can have negative results, so that is good to keep in mind. Hopefully I will not dnf. [ more ]
hfc What ever you go for, try it out in your training sessions, not on event day! Gels work for me. I used powerbar gels to get through a 6 hour 1/2 ironman last September. I also put gaterade endurance powder in my water. I did Gu gels to get through Austin marathon last week. The longest race I did was an 11 hour 50 mile race up and down a West Virginia mountain in the dark. I ate peanut butter and jelly, cooked potatoes, some gels. Rather a bizarre mix of what I had on me and what was... [ more ]
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J-Pouch ForumsPouchitis
Pouchitis Cured Itself?
F fry
fry Hi Jan, thanks for the answer. About a year ago I started getting constipation out of nowhere, which had never once happened since my surgery. It became a fairly common thing, so I reduced the immodium by one pill...and then another...and then another...to zero immodium. This process took about 10 months. It helped but didn't stop the problem so I cut one Colestid, and finally the other, over about the past 2 months. Still didn't stop the problem but they weren't helping either. [Every step... [ more ]
Jan Dollar I would suspect that you did not have pouchitis for 12 years, but something else, since pouchitis does not cure itself. Cholestid and Imodium does not treat pouchitis, just functional issues of diarrhea. So, why did you stop these meds? I have been taking Imodium for nearly 19 years. While I have been able to reduce my dose, I have not been able to eliminate it, otherwise my frequency is too high. I have had intermittent pouchitis, but not continuous. If you want to try to control your... [ more ]
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J-Pouch ForumsOstomy & Skin
ANOTHER STOMA
PouchomarxPouchomarx
liz11 so I use the tape to "picture frame" the outside edges of the flange. shower up! then peel the tape back off when done with showering adds like and entire 35seconds to the showering routine, so no big deal [ more ]
Pouchomarx So after my shower i would just peel it back off the adhesive for the flange? while its wet or dry? [ more ]
liz11 there's the link. get the 4" wide stuff. Also its a bear to learn how to get the backing off. Once you get it I can walk you through it. https://www.edgepark.com/shopcatalog/item/sc311099 good luck [ more ]
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J-Pouch ForumsPouchitis
sleeping solution that has helped
C clouseau
Kellie Rabatie I started taking benedryl to sleep when I was released from the hospital because I couldn't sleep and now know, I was also going through withdrawals from the iv pain meds. It helped so much. This is very interesting. [ more ]
clz81 This is so interesting. I never realized the active in Unisom was an antihistamine (the active in the tablets is actually doxylamine so i didn't recognize the name). I took that to help me sleep for 5-6 months of my pregnancy. Now I know why I didn't get the pregnancy "itchy" skin :-) [ more ]
Spooky True. ZZZQuil is basically just Benadryl as well, though I believe they charge more for it - something to keep in mind. [ more ]
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J-Pouch ForumsPouchitis
alleycat how is it going with diet?
R Rebe0505
AllyKat Yes, I'm better! But I'm still on the antibiotics along with the diet. No endocort this time to get out of the flare up so that is good. Doing diet. Talking with dr tomorrow about next step and FT Yes, pouchitis confirmed via scope but told because of location near the top only that it is cause by bacteria hang up. Apparently this is very common findings. [ more ]
Rebe0505 hang in there lady..you got rid of it before you will again.. one way or other diet of eliminating simple carbs and starches will or should help because you are not added to the inflamation caused by the pouchitis..between your drugs and diet you should get it under control soon.. have you been diagnosed with pouchitis through scope by the way? in my case as i said it was not pouchitis but bacteria overgrowth.. please try to stay the course with diet if you can if you think getting off the... [ more ]
AllyKat Thanks Rebbe, I'm still stupid after all these years.Had to go back on drugs. I'm also back on the diet. Really watching now. I hope this kicks this Pouchitis, my next step is fecal transplant! then idk what. Feeling sick and miserable right now [ more ]
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J-Pouch ForumsPouchitis
Chronic Pouchitis
P pjexpress
liz11 try a diet change .. that is a pretty good clue it could be SIBO. remove ALL sugar. even in thigns like salad dressing and ketchup. Reduce carbs, and in that process start with cutting out ALL wheat. good luck. [ more ]
pjexpress Thanks for the reply Scott, that did clear things up for me, I just need to make sure that they are going into the pouch to look, which I think he did since he mentioned that he found some inflammation. I think I'm going to see if the Doc will set me up with orders of flaygl and augmentin since the cipro doesn't seem to do much anymore and just try to rotate when I have a flare up, hoping not to be on them daily. I think you may be right about the SIBO since I have the huge gas buildup, I... [ more ]
Scott F The last part of the colon before the rectum is called the "sigmoid colon." When they use a scope to look at the sigmoid colon, it's with an instrument called a "flexible sigmoidoscope" (or "flex sig"). This is basically just a short version of a colonoscope. J-pouchers don't have a sigmoid colon, so when we have a pouchoscopy (viewing the J-pouch through a scope) it's done using a flexible sigmoidoscope. To make it even more confusing, the procedure codes that docs use often lack a specific... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Anxiety
Rosie128Rosie128
liz11 and calming music... with headphones. [ more ]
Rosie128 Thank you Mary. I will try the breathing right now, and the scented candles soon. I love the smell of lavender, I can imagine it will be calming! [ more ]
MaryL I have had anxiety for years. I have found a few things that have helped and I would like to share them with you 1) when I get them, I take a deep breath inhaling to 5, then hold it for 5, then exhale for 5 (seconds). It helps enormously. I also use vanilla candles or lavender, they have a very calming effect. Hope these help you. Congrats on the baby!!! [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
strange rash
N nbm
Jan Dollar Gee, I looked at your other posts. If the dermatologist does not feel that this is a skin disorder, then you need to look elsewhere. Fifth's disease does not look like a "breakout," which I interpret as like pimples, but more like redness, such as if you were slapped. It should not last more than a few weeks. Jan [ more ]
kk Thanks Jan! I did not intend on getting back on computer tonight but sister in law knows a woman that was diagnosed with fifths disease so looked it up. I am sorry I can totally understand you not being able to follow my message. I am in pain/exhausted/frustrated with still no answer.... I filled out the paperwork sent by doctor to a t. then went over w/nurse/showed her breakouts/when dr. came in like he had no clue why I was there so what is the use to fill out paperwork/talk to nurse. I... [ more ]
Jan Dollar It does sound like some sort of neuralgia, but not all neuralgia is shingles/herpes virus. A skin biopsy of the rash where you were having pain should have been able to sort that out. kk, if you are still having this pain, you need to keep at it and move on to the next doctor who may be able to figure it out. Have you seen a neurologist? He could determine what sort of neuralgia this is. A rheumatologist would be the one to diagnose fibromyalgia. I had a bit of trouble following your story. [ more ]
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J-Pouch ForumsPouchitis
Anyone use augmentum for pouchitis
AllyKatAllyKat
boy's mom Used augmentin rotating often with cipro since April, and it worked well. Sometimes my son would start on 3 pills a day and taper to one and it would still work. However it has stopped working now also. [ more ]
clz81 I used it for about 16 months straight during pregnancy and nursing to manage my pouchitis. Worked amazing for me up until the end. It became and has become totally ineffective for me now. Sad it lost it's power as it was a miracle worker for me! [ more ]
Rebe0505 augmentin worked very good for me..i would go for it..and i have had cdiff three times in 7 years..never got to upset because i took vancomycin for 10 days and rid of cdiff meanwhile it worked to keep pouchitis away.. moreover again i think diet may help us because it helps not feed bad bacteria of which cdiff is one of..and we keep our bacteria in better balance so i think its a win,win.. once you have cdiff i understand you can be more likely to get it again..so best to not over worry that... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Add me? Private Message?
G Goody21
Jan Dollar You can set your notification preferences so that you get an email whenever you get a private message (PM). Otherwise, there will be a new PM notification on the discussion board page when you log in. See the "sticky" at the top of the General Discussion Forum. You can click on that notice tab, or go to your profile and choose private messaging to view your new an old messages. I'll send you a PM as a test. Jan [ more ]
Goody21 Also, if someone would like to comment on here how to look at your messages that would help...haha [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
joint pain and blood work
D dawn58
Mysticobra I quit steroids about five months ago. But was taking them for years...five years if not more when I had UC. I also wondered if it was due to using pain meds. I didn't take any pain meds all night. But once I get moving around the pain diminishes. ..not competely but almost. Sometimes I just have to get up in the middle of the night for an hour or so just to get rid of the pain and go back to bed. But then it just comes back when I get up in the morning. I am not a dr of course but can... [ more ]
Jan Dollar Not necessarily. Having UC increases your risk. If you have been on prednisone and recently tapered off of it, you can get a lot of joint pain afterwards. But, it should resolve unless the prednisone was masking an underlying arthritic condition. Of course, long term steroid use can cause arthritic problems, some serious, but they usually affect specific weight bearing joints, not all over pain. Jan [ more ]
Mysticobra Hello All. I have a question about joint pain. I wake every morning with intense joint pain all over. I never had this problem before I got my pouch. Are we more susceptible to arthritis once we have this surgery? Just wondering. [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
pouhc
B brcook2323
Jan Dollar When you go to the ER with vomiting after you have had abdominal surgery, they are looking for a small bowel obstruction, not pouchitis, and that is the correct thing to do. It is correct, because small bowel obstruction can be an emergency, while pouchitis usually is not. X-rays and CT scans will not show much of anything unless you have a complete obstruction. Partial obstructions are fairly common, and while they cause a lot of pain, they usually are not serious. But, vomiting can be a... [ more ]
Scott F I'd be surprised if anyone in an ER knew how to diagnose pouchitis. CT scans and x-rays don't help with the diagnosis. In any case vomiting and rectal pain aren't common signs of pouchitis. Do you have a gastroenterologist you can get an appointment with (rather than the surgeon)? [ more ]
jeane If you are on pain meds that may be contributing to your vomiting. I get violently stomach sick when on pain meds. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
5 months after Reversal Surgery
E EddieW22
EddieW22 Good to hear things are improving with you. I did have the glove test done at my colon and rectal doctors appt and the doc said everything seemed normal. I will have to ask him about the c diff test. Thanks [ more ]
Pluot Yes, huge. My pouch function is the best it's ever been. I think some things that I accepted as normal for j-pouch (difficulty emptying, spasms, burning feeling during BMs) were actually a sign of underlying issues because they're mostly gone now. Not sure if it was pouchitis, cuffitis, C. diff or some combination. I just hope the improvements continue after I stop taking antibiotics tomorrow. If not a scope you can check for C. diff with a stool sample (make sure the sample is tested... [ more ]
EddieW22 I have not maybe I should but I really hate that scope. I read your blog are you noticing any changes since you have been on the medication? [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Stricutre...gas...Green stool??
P Pranav
Jan Dollar Yes, your stricture can be the cause of your symptoms. It is most likely that your stricture is the cause of the inflammation, than the other way around. But, once there is inflammation, the swelling can increase the effect of the stricture by causing further narrowing. Once you are dilated, the inflammation and resulting symptoms should improve quickly. Jan [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
fistula resulting from pouchitis
E EP
n/a Yes, you are definitely not alone who feels like this! I just read a post from Elaine in another thread who had her pouch removed and is doing well, and her fistula has dried up. There are others as well who have turned to pouch removal and seem to be doing quite well. Just something to keep in mind as you and your consultant mull your options. I am 57, so the thought of a bag for the rest of my life is not as psychologically difficult as I am sure it is for a younger person. Going through... [ more ]
EP Thanks for your post and support. It can be a lonely place going through all this and I don't think you can really understand how hard it is living with chronic disease unless you've been there. When they did an EUA to see what was going on they struggled to find the actual hole in the pouch (I think there was quite a lot of inflammation in the pouch which didn't help) and there was no actual abscess to drain, just lots of infected tissue spreading from the pouch right up to the surface of... [ more ]
n/a I find this an interesting post - I have never heard the term "fistulating pouchitis", but it's something I thought about concerning my pouch-vaginal fistula. I had my pouch for a total of 21 yrs now. It was somewhat problematic from the get-go, but livable, for sure. About 10 years in, I suffered from symptoms that my surgeon dealt with incredibly conservatively - as a result, I suffered for years from serious pouchitis/cuffitis. Also had very high inflammatory markers, felt very unwell -... [ 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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