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J-Pouch ForumsGeneral Discussion
Ulcers in rectum and pouch
AS Angela S
jeane Ang, I am posting my scope results here fyi. When biopsy results come back I will post. My report and pictures show pouch looks good as well as above pouch. An index finger dilation was performed as i still have a stricture at the anastomosis connection. I have a 1.5 cm ulceration in distal pouch and small ulceration at the proximal pouch adjacent to staple line of pouch limb. Rest of pouch looks normal. Rectal cuff showed mild erythema. GI thinks the ulceration in the distal Pouch near or... [ more ]
jeane Ang, Your reporting is a bit different than what I get, but the result is the same...pouchitis and cuffitis as Jan indicated. Hopefully they have started you on some treatment and you should get rescoped after treatment. I never have pouchitis symptoms (for them most part) even though I always have some inflammation in my pouch at scope time. My typical treatment is cipro and rectal suppositories (the latter which seems to do nothing but help minimize my constant rectal discomfort). I have... [ more ]
Jan Dollar I wouldn't get too worked up over the terminology in the path report, as it is fairly common. The pathologist is just reporting what he sees and often the GI does not have detailed labeling. It probably stated that it was obtained from sigmoidoscopy biopsies or something. It is also common for the pouch to develop rectal-type tissue changes over time, so under a microscope it looks colonic or rectal. The main thing is that it appears you have pouchitis and cuffitis, not so good news. No... [ more ]
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J-Pouch ForumsGeneral Discussion
Trying Uceris
DW Dave @ Wa
TE Marie I was just going to ask about c.diff Jan. I tend to see it everywhere as I get it too often. It's a simple go to the lab and poop in a bowl test. Please do that before you take that devil prednisone. If the doctor says you can't get it tell him you can as I get it and others on here do too. For that you need Flagyl or vancamyacin and it's contagious, if you are not clean, spore like that can end up in death. (If you end up in the hospital they put you in isolation like they do MRSA... [ more ]
Jan Dollar Uceris is the same medication as Entocort (budesonide), however it is delayed release until the colon. So, like other UC meds, such as Asacol or Azulfidine, it can be used for ileal pouch issues. The delayed release is pH dependent, releasing when the pH rises. http://www.uceris.com/patient/...-provides-relief.asp What has me baffled is why your doctor chose Uceris over Entocort, which definitely releases in the small intestine. Entocort is even available as a retention enema, if you wanted... [ more ]
Scott F I've had good results with prednisone tapers for other inflammatory processes. I've not used it for GI issues in a long time, since there tend to be better choices, but short-term use is pretty safe for people who've successfully used it before. [ more ]
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J-Pouch ForumsGeneral Discussion
cuffitis
CB CLAUD B
TE Marie The symptoms are the same, the only difference is cuffitis can bleed but it doesn't always bleed. It is just inflamed at the cuff. Pouchitis is inflamed in a larger area of the pouch. Pouchitis can be treated with antibiotics and cuffitis can't. You can also have both at the same time. I have had a c-diff infection at the same time as cuffitis and it has the same symptoms too and it is treated with antibiotics. I'm sure your doctor is going to take a lot of biopsies and pictures. Ask her/him... [ more ]
CLAUD B Thank you...it sounds exactly like whats going on with me, but im not sure i understand the difference between the pouchitis and the cuffitis. My doctor wants to scope me next week.Im feeling really weak..the increased bathroom trips all seem to be in the night.since my takedown things had been relatively ok with the occassional blockage and pouchitis. no onetells you all this..thanks for the info [ more ]
TE Marie Did you have UC? If so you can get cuffitis which is UC at the cuff where the j-pouch is stapled to the rectal stump. The most popular surgery is the double stapled procedure. They remove all of the rectum with the colon except for around 2 cm of the rectal tissue at the very bottom and that is what they staple the j-pouch to attach it to the rectal cuff. As that tissue can get UC in some of us it does. Bleeding can be from having UC in that little bit of cuff tissue and it can be very... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Atonic pouch now? What else can happen to me?
rachelravenrachelraven
Donna H Oh Rachel, Just read about your dilemma and I am so sorry you are going through all of this. Hopefully you will get some answers and relief after today's procedure. [ more ]
tammykathleen Have you tried taking some gas-Ex to help? Or Pepto Bismol? Both help me with gas. I hope your procedure goes well!! [ more ]
TE Marie I've read of many getting dilated under anesthesia. Jeane is one I specifically remember. You might want to PM her. I hope this clears everything up for you. Good Luck! [ more ]
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J-Pouch ForumsK-Pouch Korner
Drinking Soda
SA Sydney AZ
Bodoni I don't drink sodas. Too much carbonation. I stick to iced tea and coffee. [ more ]
grandma64 I drink Diet Sierra Mist, I will pour it into a glass of ice and let it water down a little before I drink it, so that helps me out a lot! [ more ]
vanessavy I drink Ginger Ale a lot. It seems to be the best for me. I had most of my stomach removed years ago and back then I couldn't tolerate can soda but fountain had less carbonation so I had less gas. Seems to be the case currently for me still. [ more ]
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J-Pouch ForumsGeneral Discussion
What do you think?
Kline84Kline84
Kline84 Thanks for all the help! I have been putting a little eucalyptus oil in the sitz bath as it is soothing and claims to have morphine like properties. It does seems to be helping but I'm not quite sure about the morphine claim lol I have been taking Metamucil wafers and those have helped slow things down a bunch. Theses last couple days at work have not been to horrible. [ more ]
SKadett I'm not sure how this works in the states, but in Canada pharmacies have a whole slew of medications that are available over the counter, but you have to ask at the pharmacy for them as they are not on the shelves. There might be stronger painkillers that you can take that you can get without a script. Ask the pharmacist. [ more ]
SKadett Get yourself a bottle of tea tree oil, put 8-10 drops in a warm sitz bath, it will cool and soothe the sores better than just a plain sitz. It's a natural antibacterial/antimicrobial oil from New Zealand. Also, manuka honey is some incredible stuff, it's made by bees who get their pollen from the tea tree. You can eat it, or spread it directly on a wound. You can also get yourself a little squirt bottle that you can use to clean out the wound when you are not at home or close to a sitz bath. [ more ]
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J-Pouch ForumsGeneral Discussion
some advise please
SH shawne h
shawne h Thanks MadHatter from your reply I am assuming he was your Dr. I like to go prepared with questions as I find I'll remember the answers to my questions but if he says something in converstion I tend to forget. I'll try to do a bit of both and write down some key points. Thank you for taking the time to reply. Shawne [ more ]
mad hatter DR. Cohen and his staff are terrific. He is an expert in this type of surgery and treatments and you will be in good hands. If you are not sure what to ask start off by simply answering his questions and then ask him what he feels your options are and what you should do. From my experience with him he is very up front, polite and caring so you will not go wrong listening to what his team has to say and what they feel they can do to help you get better [ more ]
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J-Pouch ForumsGeneral Discussion
Stomach virus
V vstRN
Jan Dollar Anyone who has had a prolonged illness is more susceptible to viral attack. Not having a colon makes us more susceptible to the effects, because we dehydrate quicker, same as the elderly or small children. On top of that, there are more virulent strains of norovirus out there now. An example is a few years ago my husband and I ordered the same meal in a restaurant. We both wound up with symptoms of food poisoning. He got over his in a day (and he even has UC). Mine went for 3 days, then I... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
How long do you have to wait to have sex again?
L LisaB827
Pluot I finally spoke to my surgeon's PA and she said "Whenever you feel ready" after pouch construction, the main issue being the healing incisions (along with libido, energy, etc). I specifically asked if there was any danger from "jostling the pouch" to the new anastomosis and she said definitely not. As an estimate she said she thought about 3 weeks post-op, or two weeks after discharge. [ more ]
skn69 A good indicator for me was my libido...I was not in much of a mood for love when I was post op (usually valve revision or full out pouch surgery but I have a k pouch) so my body and my libido were pretty much insync...it would take 4-6 weeks for me to even consider love making and another couple for me to feel 'safe'...that said, you really have to be ready for certain things to take time...some of us are miracles of biology and things work perfectly the first time out...others find that... [ more ]
FrustratedButFighting I know this is a little late- but my surgeon told me waiting 2 weeks was all I needed to do. He basically said at this point if I felt ready to, it was fine. Personally I waited 4 weeks because that was about the last thing I was interested in at the moment. lol But at 4 weeks all went fine so I think it is more important just to listen to your body and how it feels. Good luck! [ more ]
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J-Pouch ForumsMen's Health
need some advice
N Nickhuss
arvenderpan well as you are saying you had some fainting problem while driving.. so I just want to know that how many time you have spend in driving and what work do you do and I also want to verify what food you have in your general food..? [ more ]
Nickhuss thank you so much for the reply. I think you nailed the problem. It must have been the antibiotic. I don’t do well with meds to begin thank you so much for the reply. I think you nailed the problem. It must have been the antibiotic. I don’t do well with meds to begin with - I also took Prednisone with it which I stopped after taking for two days because of strange reactions. I forgot the name of the antibiotic but it was 500mg. Today I really feel good - I took vitality multi vitamins... [ more ]
JillM What antibiotics did you get? Flatly causes the numbness you describe for me. I'd check if the med has that side effect. I had fainting and light headed issues early in my GI history and we never really solved it. But if you have bronchitis, you should probably rest a bit - skip the work out for a few days - maybe opt for a walk instead. There are some really strong viruses out there this year. [ more ]
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J-Pouch ForumsGeneral Discussion
my bottom is in pain!
lovedby2lovedby2
lovedby2 My diet usually is baked chicken with something bland as well. It just seems lately no matter what it is I'm eating, my bottom is in severe pain again, similar to how it was several months ago. I am almost at my 6 month post takedown date. I finally got to sleep around 1:45 am and had to wake up with my kids at 6:30 am. This is too routine as far as my sleep cycle. [ more ]
Indy_Dave same for me - advil, A n D ointment and laying off any greasy fried food (or spicy foods) until pain gets better... [ more ]
PippiThePirate Ugh, it's the worst feeling. It usually happens to me after multiple poops in a day. The only thing that works for me is ointment, Advil and sitting on a heating pad. [ more ]
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J-Pouch ForumsOstomy & Skin
How "toxic" is the smell when emptying bag?
B Badplumbing
Domino300 Hydrogen peroxide is a cheap and effective odor eliminator, just a few drops in the bag. 32 oz bottle is cheap and lasts a long time. [ more ]
manders6 Oh, and I heard from a fellow ostomate that this stuff works great to keep the bag smell down: http://www.nascent4u.com/index.htm [ more ]
manders6 Depends on what I eat... if I've eaten any fish or eggs recently then I stink pretty badly. I found this Poopourri stuff that helps keep the bathroom less of a toxic waste dump. http://poopourri.com/ [ more ]
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J-Pouch ForumsGeneral Discussion
Bloating and weight gain?
L lol?
lol? Thanks. My surgeon's nurse today told me I was worried over nothing considering my surgery was only 4 days ago. Oh well, I can wait it out. And yes, the gas bloating seems plausible. It does feel like I'm packing some air in there, and have quite a bit of gas when I use the bathroom. Thanks for the input, guys. [ more ]
Jan Dollar A common concern. This is typical. Surgery is trauma. Trauma causes what is called "third spacing" of fluids. Basically, it means that fluids move out of the blood stream and in between the cells (as opposed to inside of them) in what is known as the third space. It is the reason extra fluids are given during surgery (to keep the blood pressure up). After 3-4 days, things normalize and fluids return to the blood stream, get filtered out by the kidneys, and removed through urine. So, you are... [ more ]
lol? Well considering I've never gained weight so quickly, even after a drinking binge the night before, I can only ascertain it's normal given the fluids via IV in the hospital, etc. That said, though, I did urinate like 4 liters in the hospital, so I don't know. I guess, like before, I'll just have to wait it out. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks for the Positive Stories
L LisaY35
CTBarrister Nobody can know the answer in your specific case. I had UC for 20 years and I had a similar pattern until the last year, when things mostly went downhill for me. On my last scope in 1991, I was determined to be exhibiting low grade dysplasia and the UC had progressed throughout the entire colon. At that point I did not feel appreciably more terrible than I had previously. My GI recommended a colectomy and told me to do it then, while I was still young (28 at the time) and relatively healthy. [ more ]
LisaY35 Thank you so much for all of your words of wisdom. As you know, it really helps hearing other people's stories and as well as being able to talk things through with others who are/have been in the same boat. I think that deep down, I really have made my decision, but somehow needed approval that it is the right one. My colon decided to reaffirm it for me at my last bathroom trip. @Donna, I do hope things turn around for you and that pouch. As I am new to this, is it possible for you to say,... [ more ]
1970UC Hi Lisa, i had a similar experience with regards to my condition getting better after i scheduled surgery. i had colitis for 24 years, but most of that time i was in remission. the last year and a half my condition started to become unresponsive to my maintenance meds. had to go on 60mg of prednisone to get it back into remission. got off the prednisone and started to show signs of a minor flare a month later. because of that and also having dysplasia, i decided to have the surgery (took me... [ more ]
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J-Pouch ForumsGeneral Discussion
alternative to Flagyl for C diff?
poucherpoucher
Pouchomarx I had c.diff in the past and Shen has me on Tindamax which is also used. [ more ]
Jan Dollar If you have C. difficile infection, it is a good idea to get off of the Cipro, since it reduces the bacteria that helps keep that nasty bug in check. If you can, try to switch to probiotics. But, you have to live your life too, so I know it is a tough line to walk. Rifaximin is another choice you can use in tandem with other antibiotics. Good for you for thinking of future issues! We all need to have other options when our plans are foiled... Jan [ more ]
poucher ...chronic dependence on Cipro. Without it my WHOLE body becomes inflamed. It helps arthritis, psc, bact. overgrowth, pouchitis .... Certain bacteria trigger an immune response from 17 helper T cells. Antibiotics treated my UC for several years until I got super infections, then surgery in hopes that I could stop meds. However, I still need meds. Antibiotics long term are what I will require. Possibly ALL THREE Jan .I am gathering information for the future. Also, I have noticed an increase... [ more ]
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J-Pouch ForumsOstomy & Skin
Stoma to Tight
Darren HDarren H
Jan Dollar Yes, both of the above issues can cause partial obstructions, and can come on gradually. But, yes, you don't want to wait for it to become an emergency. Are there any bulging areas around the stoma? If so, could be a peristomal hernia. Jan [ more ]
Darren H Thanks Jan, I dont have a total blockage. It is passing but just not very easily and i can feel it coming through uncomfortably which wasnt always the case. I dont think its an emergency situation just yet but i will get in contact with my doctor on it. Better safe than sorry. [ more ]
Jan Dollar First, are you able to pass a small finger through your stoma easily? If not, you may have a stomal stricture, and yes, time to see the surgeon. Don't try to force anything. If you can get your finger in there OK, then there may be an obstruction, either by fibrous food buildup or from adhesions causing twisting/kinking. If switching to a liquid diet does not move things through, again a visit to the surgeon is in order. You may need some imaging to figure it out. Good luck! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Smoking!
D Denis
ARP83 If you still want to smoke and have that urge but without the chemicals you can always try the elctronic cig...I use the tubed version I still get the same relief, however i dont wake up feeling like I have a pound of bricks on my chest. I can also go days without using it. I quit the real smokes cold turkey day 1 back from my 9th deployment. I would reccomend cold turkey because all the othr stuff is owned by the cigarette companies and you become do-dependent on them (or so i felt). [ more ]
vanessavy Smoking helps with inflammation so I have read. Reason I hear people's GIs mention don't quit if you have pouchitis/UC. My friend with Chron's claims her guts do better when she smoked. Or so she thinks. [ more ]
skn69 You are welcome anytime Val...but I suggest that you wait til the sun comes out here...For now we are in a perpetual state of grey and rain...makes for soggy cigarettes! I do still feel as if the cigs 'calm' my guts....probaby psycosomatic but there may be something to it... Can't wait for the sun to come out...I feel like my armpits are growing mushrooms from all of the humidity here! Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
At my wits end with this
K kk
crazy She has not had a recurrence and is doing great hope you are better as well [ more ]
TE Marie kk, I wish you could go to an Urgent Care office and get help today. I don't know if they have them where you live. They are walk in clinics but not ER's. I think it would be good to see and Internist and/or Dermatologist as it appears whatever you have is spreading. Please google vasculitis as you might have something like it. My dad's had it too and ended up in the hospital. My insurance company won't pay for the shot until we are 60.Both of my parents had bad cases in their 60's and still... [ more ]
kk THANKS SO MUCH! Hope she is doing good now. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Has anyone had a anal fissure?
J Jodie_31_UK
crazy I had one last year and it was awfully painful i had surgery and took at least 6 months to heal as im constantly going to the bathroom atleast 10 times a day. Good luck i never want to have surgery on bottom again. [ more ]
kellyanne Yes , I had a fissure running from my rectum to my vagina in 1996. Had surgical repair with skin "pulled" over it to "shut it down" was supposed to be hospitalized over night but after the operation it ended up being much more difficult than they expected and was in the hospital for 4 days. They took skin from around my rectum and was extremely painful. But as all of us j pouch patients know, none of these procedures are ever without pain! We know pain! I never had one again ( thank God!)... [ more ]
kta I had something that the doc said he would call a fissure because he had never seen anything like it. It hurt like hell! It healed on its own after I began taking Questran to bind the acids in my stool. [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch
P Pen
liz11 I live in PA, have blue cross blue shield and am a frequent patient at cleveland clinic. My insurance covers everything at CC. You need to call CC with your specific insurance information and find out. [ more ]
CC Rocks I have Blue Shield, had all my surgeries at Cleveland Clinic, and I go there to see Dr. Shen, going there this Friday. I have never had a problem with my insurance. HAve you tried to call Cleveland Clinic and talk to someone there?? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Perianal abscess
DN D. Nocerino
D. Nocerino I'm finding the sitz baths help a lot with the pain especially after a bowel movement. [ more ]
Jan Dollar Even if it is not open, sitz baths help the infection to localize and form an abscess pocket, if needed, or improve the circulation to help the infection heal. Jan [ more ]
liz11 Jan that makes sense. Because once its really an abscess a sitz bath wouldn't even do anything, because it would be closed off. So now if the thing is open, the sitz baths are good because it will help keep it open and draining. [ more ]
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J-Pouch ForumsOstomy & Skin
One or two piece?
EricEric
hart155 I think it matter how consistent the shape of your stoma is. Mine is always different and so I cut to fit each time. I feel more confident when I can put the flange on and see the fit is good and then put the bag on. Also being able to "burp" the bag is important for me because sometimes it fills up with gas quickly at times when a restroom is not nearby. I'm not sure what you do when this happens with a one piece system. [ more ]
chiromancer Ok , I will make the case for one piece. I dont disagree with the posts previously written regarding the advantages of the two piece. They are pretty much all true but I found the advantages to of very minimal value, for me. I tried the two piece for all the reasons listed and found the two piece has those advantages but I just didnt need or make use of them. I did have a couple of leaks with the two piece at the connection due to operator error but they were still leaks. I think this is a... [ more ]
Pluot Agree with everything Liz said. The only advantage I see of one piece over two piece is that it has a slimmer profile (lays flatter on your body), but there is no need to think about that in early days after surgery. Some people say they like one piece better because with a two piece the bag can detach unexpectedly from the flange, but that just means you are using a ****ty two piece! In any case, your insurance will probably only cover a month of supplies (maybe three) at a time, so you... [ more ]
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J-Pouch ForumsGeneral Discussion
Need info about these medicines
Uc-DanielleUc-Danielle
Jan Dollar I was on Humira for a few years. I had no problems. The main advice I can give is to get the prefilled syringe instead of the pen. With the pen, you have no control over the injection speed. Once you push the button, the needle goes in and the medicine automatically injects. Injections in the abdomen sting less than into the thigh (at least for me). I would let the syringe sit for about an hour out of the fridge before injecting. All the rest of the information about the drug you can get at... [ more ]
liz11 Danielle. yes Dr. Shen's mind goes so fast that sometimes he can be confusing. I have learned to record his appts on my phone. I should have thought to suggest that to you when I saw you on Friday at CC. But then again I was still quite drugged up from my ileoscope and injection with him! Anyways - tindazole is an systematic antibiotic. For me, it is one that I am able to tolerate without any side effects. Dr. Shen had me on it for pouchitis before I had my pouch ripped out and my infectious... [ more ]
Pluot Tinidazole is very similar to Flagyl (metronidazole) in mechanism and side effects. I was on longterm antibiotics (Cipro and Flagyl) to treat my UC and my GI wanted me to switch to tinidazole because she felt the side effects were less worrisome than Flagyl (but I got a colectomy instead ). [ more ]
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J-Pouch ForumsHelp! Need advice now!
Finally - Surgery scheduled for next Thursday
S Solomin
liz11 solomin. I am kind of shocked that they are doing this laproscopically with all of your previous surgeries. I wouldn't question things if they wanted to open you up to do this. It allows them to do a much more thorough job sometimes if they can see everything. When I went from jpouch to disconnected jpouch with diverting ileo.. Dr. Remzi opened me up. He did not do this surgery laproscopically on me. It was a pretty easy surgery in the big scheme of things. Gut wise, I was fine in about two... [ more ]
Solomin Hi Everyone, Thanks for the info and good wishes. With luck, this will be temporary and leave up to reconstruction jpouch surgery in the neat future. I certainly don't want to have a bag the rest of my life. I am scheduled to drive 8 hours from Montreal to Philadelphia on May 2 (2 weeks after surgery) which is why I was asking about recovery period. Doesn't look too hopeful now. Wishing everyone good health ! Cheers, Solomin [ more ]
vstRN I recently had to go back to a temp diverting ileostomy. Yes, surgery was short - I think around 45 mins? I was in the hospital for 2 days and then driving again as soon as I switched from percocet to tylenol (I think around 5 days). BUT I really could have used longer to recover. I have 2 small kids and not too much help so I usually have to jump back into things pretty quickly. Just wanted to give you worst case scenario in case you don't have too much time. Good luck to you. I hope you... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Humira for 12 Year Old (or maybe SCD first)
Lynne2Lynne2
Lynne2 Thank you for sharing the diet and support tips. Pecanbread has been very helpful and a great source of info during these early weeks. I also draw ideas from GAPS and Paleo. Too soon to tell if it's SCD or prednisone that's working, but he's looking and feeling better already. The real test will be to see what happens when he gets off the prednisone. His doctor is predicting that he will flare again soon, and i hope to prove him wrong! Either way, I firmly believe that this style of eating... [ more ]
Lynne2 I'm so very sorry to hear about your daughter, CedarsFam. It must be absolutely horrible to watch her go through all of that. She is lucky to have such a devoted parent who is doing everything possible to promote her health. I hope things turn around for her soon. Sending best wishes and positive thoughts your way. [ more ]
CedarsFam Hi, I also have a 12 yr old child who has used both Remicade and Humira. She developed a septic hip joint after just 3 rounds of Remicade. The Humira worked well for a full year...injections every two weeks. Used prilocane/ lidocaine 2.5% prior to injections but it just numbed the pain from the needle going in....not the Humira itself. Taking it from fridge an hour prior helped some as well as injecting it slowly. She advanced to weekly doses, then after a 15 day stay in hospital on IV... [ more ]
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J-Pouch ForumsGeneral Discussion
Four-month Update (Success Story)
bootstrapbootstrap
bootstrap Liz- No I have not had any issues with leakage at all. The only time I had a tiny bit of a leak was when I had major diarrhea from coming off of a solid month of antibiotics. Other than that, zilch. Occasionally if I haven't emptied out enough before exercise, the jostling and gravity of jogging will make me feel like I need to go, but I can always hold it as long as I need (though it can get pretty uncomfortable at times). Sex has not been a problem at all. Everything functions normally. [ more ]
Pluot Hey boot, have you had any issues with incontinence or leakage? Particularly curious about during sex and during exercise. Overall would you say your quality of life is better now than it was while you had your ileostomy (post resolution of skin issues, finding good appliance, etc)? [ more ]
bootstrap Actually, I still experience that issue. I have not found any creams or ointments to have much of an effect on preventing butt burn or itching, though I do use an ointment to help soothe and protect the irritated skin once it's already raw. What I HAVE found to help butt burn is taking Metamucil (psyllium husk powder) once or twice a day. Somehow the psyllium husk tends to soak up the digestive juices that cause the irritation in the first place. It helps a lot with that issue; just make... [ more ]
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J-Pouch ForumsGeneral Discussion
cuffitis?
W wiggles
wiggles thank you jan. your replies are truly appreciated... [ more ]
Jan Dollar Well, peanut butter and jelly isn't as great as it seems, because it is high in sugar, which promotes diarrhea, particularly if your gut is used to Ensure. It is even possible you have peanut allergy, one of the most common food intolerances. Things like oatmeal, rice, tapioca, banana and applesauce are better transition foods. It sounds like you are having spasms in your sphincters. I had those for a year or more post op. I don't know if it was the right thing or not, but I just tried to... [ more ]
wiggles could it be my cuff isnt a problem at all but the pouch is trying to deal with a pure liquid diet? i do bleed but remember im on blood thinners for a blood clot. whenever i add like pb n j sandwiches i get a lot more frequency. could cutting back on my hc suppositories possibly help like in jeans thread? maybe it aggravating my situation. i did have pain in the cuff area that has subsided since the hc's but now and then i get these intense urges to go and freeze in my tracks till they subside... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
thinking about trying
C CallieD
JillM My situation was different as I had a perm ileo after failed j-pouch when I was pregnant, but some things would be the same...the scar is fine on the outside, but if you have adhesions on the inside you might feeling some pulling or in some cases get an obstruction (this happened to me). But all resolved and baby was fine and so was I ("baby" is now 7 ) Had a second baby 2 1/2 years later and that baby is almost 5 You should be fine post baby as far as the pouch goes. The biggest decision... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
burn from fistula horrible
N NJK
n/a Agree with the calmoseptine. It also helps to "contain" the drainage. I don't know where your fistula exits, but you might try covering it with a cotton round or gauze. This gets changed after every BM. [ more ]
LC If its not vaginal calmoseptine does wonders. I'm not sure what to do for a vaginal fistula. If you don't have calmoseptine I would try some other barrier ointment but calmoseptine is the best. [ more ]
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J-Pouch ForumsGeneral Discussion
gurgling on left side
J jjok
Lu31 I get this when going to bed. If I lie on my left side, I feel and hear the gurgling. If I lie on my right side I am ok. This is only initially and later in night, I can swith to my left. I just assumed it was the position of my pouch or something. [ more ]
Jan Dollar I wouldn't worry about the location. It all depends on where your adhesions are (we all have them) and what effect they have on your gut. As long as there is no pain, fever, swelling, or redness, it is just your intestines moving stuff through. Jan [ more ]
suebear I often get this when I am hiking. In my case it's caused by the water I'm drinking while hiking. Sue [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Blood when exercising??
WBrooksWBrooks
TinCan I personally have not experienced any bleeding after running/exercise. But then again, I didn't start back on an exercise routine until a good two months after my reversal. Perhaps you are moving a tad too quickly? I would be interested to hear from other runners on this. I should also note that I currently do not run more than a 5k at a time - although I hope to make the NYC marathon in 2014 (fingers crossed!). [ more ]
suebear This is common in jpouch runners. The blood vessels in that area lie fairly close to the surface and are easily agitated. I'm sure some of our regular runners will be by to comment. Rest assured we have quite a few marathoners on this page. Sue [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Hernia - part 2?
JenniferGJenniferG
JenniferG my hernia mesh is about the entire right side of my stomach so Im afraid to hear how much they will need to open me up... [ more ]
Dog I just had my hernia repaired via open surgery. The research I did shows that laproscopic hernia repair has a higher incidence of recurrence than an open repair. However, that depends upon the size of your hernia. I had a small incisional hernia at my ostomy site that I just had repaired about a month ago. The scar actually looks better than my old ostomy scar. . .not sure if he did some extra work to do that or not. [ more ]
JenniferG see that's the thing. the spot is really hard but it only bulges at certain times. I had a lot of pain after surgery and the surgeon acted like it was just surgical pain and would go away. heh, ya, pain is still there. prob because I have a hernia still LOL I know letting it go doesn't sound like the right thing to do... I may just drag my feet a little? [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Psyllium Husk a good bulker. (the one without senna).
D DAVE.L
Scott F Gloria, is that flavored or unflavored/unsweetened psyllium that you mix in the yogurt or applesauce? [ more ]
dgloria5 Put it in yogurt or apple sauce, I've been putting it in yogurt every night and cold or hot cereal in the morning for 13 yr's, works perfect can't even taste it. A couple of teasp. ea time. [ more ]
Scott F Metamucil powder comes in two textures, original and "smooth." I've only used the smooth, and just mix it (orange flavor) in about 8 ounces of water and chug it. I ignore the taste and texture, but it's not the very best part of the meal. The wafers were probably a bit nicer in some flavors than the powder (and worked fine), but had more calories I didn't need. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Diet-High Fat Low Carb (Atkins)
S skimzuma
Scott F One of the things that made me decide it was time to have surgery was that I had started buying ramen noodle packages by the dozen. It was often all I could tolerate. I was very pleased a year or two ago to discard the remainder - untouched in the ensuing years. [ more ]
Jan Dollar She doesn't. According to the link, her doctor says she is malnourished. Jan [ more ]
CTBarrister On the other end of the spectrum is this 18 year old girl who has eaten nothing but Ramen Noodles for 13 years and refuses to eat fruits and veggies: http://shine.yahoo.com/healthy...tion--165713286.html I do not understand how she doesn't look like a ramen noodle. I wonder how she gets all the vitamins she needs eating nothing but these noodles? [ more ]
See all 12 replies...
J-Pouch ForumsHelp! Need advice now!
Feeling constipated, but having frequency
LaneyLoveLaneyLove
Jan Dollar Another consideration is an anal stricture, which is a common complication, even years post op. More rare is a structural defect of the pouch, where it collapses upon itself when you try to evacuate. It is like a form of prolapse (intussusception). Try the easy fix first by hydrating yourself and see if that solves your problems. If not, time to call your GI or surgeon. Jan [ more ]
Scott F I'd advise everyone without a colon to drink plenty of water, period. Managing your bathroom trips this way is a dangerous game, not particularly effective, and is unlikely to end well. There are much better ways to manage life with a J-pouch, IMO. [ more ]
LaneyLove thanks so much Chris-I admit I am probably dehydrated. I avoid drinking too much to avoid extra trips to the bathroom. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Sharp kidney pains
S skimzuma
Jan Dollar Good call! If this is related to Celebrex use, the next symptom could be GI hemorrhage. Celebrex is touted as being safe for the gut, but it has the same cautions as other NSAIDs. It just is less likely to be the cause. Jan [ more ]
skimzuma Since this post I have stopped taking celebrex (200mg 2x day for the prevention of duodenal polyps) and haven't noticed any resurgence of these pains. Unfortunately I think if I want to prevent these pains I might have to discontinue use :/ [ more ]
AllyKat It sounds more like gallbladder. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Severe pain at former stoma site
C Clynn173
Jan Dollar Adhesions can cause problems decades later, and the ostomy site is the most common area for this to occur. I'm not getting this "not until July" business. Did you tell the receptionist that you are a returning patient and having new, sharp pain related to your surgical site? Seems like they are treating you like a new patient. Jan [ more ]
Clynn173 Thanks so much Jan! I am going to go ahead and wait to my GP on Tuesday. He's on vacation this week and booked up Mon. He's been my Dr for years and I really trust him. Thankfully my insurance does not require referrals to specialists, but the surgeons office couldn't work me in before July. I can definitely manage, just hurting. Started liquid diet today, seems to be ok so far. So glad I splurged on a vitamix earlier this year. Going with some pretty plain bannana/yogurt smoothies right... [ more ]
Jan Dollar This sounds like an adhesion causing a partial obstruction. Not an emergency, so it is fine to wait until next week to see your GP. If you are staying home, might be a good idea to call your GP's office back and see if they can squeeze you in on an urgent basis. You probably need a referral to your surgeon anyway, so may as well get the ball rolling. If the pain becomes constant, then skip the urgent care and go to the ER. Unless the urgent care is part of your regular physician system, I... [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
Mystery pouch
EricEric
vanessavy I used a clamp until it didn't work right and just added weight. I use these and they rock! It is a plug for the catheter. https://www.edgepark.com/shopcatalog/item/570414l [ more ]
Patricia Walker Yes I agree. On the outside of my valve it is covered in ulcers due to problems inserting catheter. I was not aware of this until a more recent examination of reservoir. Reservoir 100% perfect after just under 40 years. Best wishes for 2013 to everyone. [ more ]
Eric Sounds like a good idea, think ill try that, I don't mind leaving the cath in, I just hate the bag, think I'll clamp it, thanks guys!!! [ more ]
See all 9 replies...
J-Pouch ForumsK-Pouch Korner
Considering converting J-pouch to K-Pouch
JenJenJenJen
vanessavy I drive 5.5 hours and totally worth it. Cleveland is also fun I am going to see Remzi and explore options to do surgery. [ more ]
kaydbird Jen, I had my j-pouch done in FL where I grew up when I was just a kid. But all my more recent stuff was done at Cleveland Clinic. GI is Dr Bo Shen and surgeon Dr Feza Remzi. They are both fantastic docs. Only a few do k-pouch at CC Remzi and Deitz I think, maybe one more but I am not sure. Remzi is now the department head, it may be more difficult to get an appointment with him. At least CC is not quite the trek for you that it is for others if you decide to get a consult. -- katie [ more ]
Jan Dollar Jen, yes, I definitely would postpone this hernia repair until after you have consulted with your pouch surgeon. What may seem like a simple hernia repair could actually ruin your option for a k-pouch, especially if it is large and requires mesh. I think you are right that the surgeon who is doing the hernia repair is just focusing on that, not the big picture. Jan [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Medicine
G grandmaof1
Jan Dollar Grandma, have you had an upper endoscopy (EGD) or any studies of the esophagus, stomach, duodenum and beyond? Nausea is not typically a pouch issue, but more of an upper GI thing. Also, your IC probably has more involvement with your symptoms than you think. How about a second opinion from a different GI? It seems like this guy is out of suggestions. Plus, if he is anti-j-pouch, then he may not be very motivated to make things work for you. You may want to PM Vanessa. She has IC also, along... [ more ]
lovedby2 I am 5 months post takedown. I do feel nausea every once in awhile too, due to certain foods I eat... Either a partial obstruction or just not settling right. Dr did tell me with my upper endoscope in December that I had a bacterial in my stomach, helicobacter pilori. Can't treat it yet, due to other treatments/medicine I'm on. I can tell you that I felt like sh@# as well, wanted to give up, and just sick and tired of it all...until my Dr suggested self dialation. Off subject, but since... [ more ]
poucher I often feel nausea and no appetite. However, it takes a bowel obstruction for vomiting to occur, in my case. I am also sick of being so sick. I love the moments when I feel well enough to do things that I enjoy. I wish I could help you with good advice. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Nightly Incontinence
D dr
n/a Cuffitis can also contribute to night-time accidents. Perhaps ask your doc for some Canasa suppositories to try for 2-3 weeks. I too had my pouch for about 10 years before I started experiencing regular (2, 3, 4+) accidents at night, and symptoms that sc56 describe. Ugh. After fistula discovery, antibiotics, and canasa, accidents have been reduced significantly. Good luck -- [ more ]
sc56 Just found this forum. I have had my J Pouch for 18 years. I have FAP so have not problems like the UC folks. In the last week I have woken up in the middle of the night, go to the head and can't go. Back to bed 10 minutes later feel the need and nothing on the throne. Back to bed and 1/2 hour later leaks. Has happened 3 out of 5 nights. It usually happens maybe once/yr. I know I am "lucky" after reading many posts on this forum, but I am a walking zombie this week. Never had pouchitis that... [ more ]
nocolon-2000 This will sound weird, but the thing that keeps me from night-time leaking/incontinence is a probiotic. If I run out for more than a few days, I starting having nighttime accidents. I can also tell when I have missed my Imuran as I start feeling like I have the flu. I guess I am just suggesting....start a probiotic if you aren't already taking one. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Sudden Urges
W WW_Domenic
WW_Domenic Seen my primary care physician yesterday. She consulted with my GI physician and decided that another round of antibiotics was needed. Going with Flagyl this time around (500mg x2day). Seems the earliest they can do the scope now is June 5 . I just hope they figure this out soon. It has gotten to a point where I stop eating at 10pm at night just so I can go out the following morning and do my errands. Once I am home for the day I eat. I know not eating isn't good for me, but nothing else... [ more ]
WW_Domenic I figured out the culprit of my sudden urges. Lactose intolerance, which I was never before. This is a new thing. Figured it out by accident. Didn't eat any dairy during the day and my symptoms calmed down. Had some ice cream last night and they all came back again. No dairy so far today and I'm getting back to my normal again. ~sigh~ This is going to be difficult for me. I love dairy soooo much. I'm going to try some of the lactose pills to see if that helps. Hopefully it does. [ more ]
WW_Domenic Well....looks like it is another case of pouchitis after all. Blood started showing up in my stool today. Hopefully my doctor will call in a script for antibotics and not make me wait to see him next week. Thanks again to everyones input. [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
Nausea ?!
M mads101
Jan Dollar Gee, just a guess, have you started your period yet? If not, this could be early symptoms. Jan [ more ]
grandmaof1 My doctor wrote me a prescription for zofran and it goes under my tongue. I feel that way a lot and was told by my GI doctor that my surgeon would have to go in and fix something that could have grown over. Well I don't want another surgery again. So I just take my time when I feel sick and breathe deeply and slowly. Sorry you are going through this. And I am sorry I don't have the details on what could be the issue. I am not that bad so I am not going to worry about it. I do like having the... [ more ]
Scott F It could be gastritis, or less likely food poisoning. Have you tried antacids or Zantac? [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Pancreatitis anyone
B Bethie
ValB Bethie, has your daughter had her ultrasound? am curious what they found. Is she feeling any better? Just wanted to check in. [ more ]
brittb10 I'm a 21 year old j-poucher as well and have been having extreme upper abdominal pain. It usually occurs in the mornings and then goes away and comes back the next morning. It lasts anywhere from 30 minutes to an hour or longer at times. My GI put me on omeprazole but I'm still having this pain. [ more ]
Chuckus Yes, I concur. It could be a slight bowel obstruction.....it could be heartburn, it could be, it could be...... [ more ]
See all 15 replies...
J-Pouch ForumsHelp! Need advice now!
Had j pouch 1 week....holy itching!
C CedarsFam
LaneyLove I too am very sorry to hear that your daughter is going through this, and as a mom it must be so difficult to watch her suffer. I continue to have problems with itching, burning etc...I have also tried AD ointment, Desitin, and recently bought Tuck's Medicated Spray (hemhorroid spray) it does burn when initially sprayed, but has provided a lot of relief. Also, when I was pregnant, during my exam my OBGYN noticed how red and sore my bottom was, and suggested I try Crisco...It was strange... [ more ]
grandmaof1 I use dubicaine and 40% zinc oxide. I get it in the baby department. The cheapest place for me so far is at Target. They have there brand of zinc oxide. The dubicaine I ordered it through drugstore.com. I have also got it a cvs in there brand. But it cost more. I put the dubicaine on my rubber glove finger first and then add zinc. I also love my heating pad cause I got sick of being in the tub. Also highly recommend a Bidget. I got just a cheap one with cold water and I love it. I would... [ more ]
Donna H It will get better but I remember how terrible those first weeks were. She is doing very well if she is only having 6 poops a day. I have used so many ointments for pain and itching and I do very well with Calmoseptine for healing, itching and cooling. It must be so difficult to see your child in this situation. I wish you both the best during these difficult days and yes, she probably will take a step backwards but feel assured she will take two forward. [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Anyone with other digestive issues - nausea, pain?
L Lu31
Jan Dollar You do not need to have all the symptoms to have a problem gallbladder. The sharp pain and fever are mostly for acute cholecystitis, not chronic. Plus, since you were taking Celebrex, the pain and fever could have been masked during the acute phase. Your symptoms do seem to fit, in my mind. It can be a very elusive diagnosis, as many here have found out. Sometimes it takes a HIDA scan to pin it down. http://www.mayoclinic.com/health/hida-scan/MY00320 Jan [ more ]
Lu31 Actually...just found out that my ultrasound results came back fine. So my GP is going to set up a CAT scan to rule out any other issues. Thanks for the link. The symptoms don't seem to match (no fever, sharp pain, etc). I'm not even sure if it's IBS as it's not diarrhea and i'm not really bloated. It's such a balance game...my joints are definitely worse since stopping the celebrex but then there's my messed up stomach. I haven't tried it yet but will bring it with on a trip coming up where... [ more ]
Jan Dollar If I were you, I would not resume the Celebrex at this point. It may be the reason that there was not much inflammation at the time of the endoscopy. If you have chronic cholecystitis (inflamed gallbladder), there may not be stones present (but they are in most cases). The presence of stones does not necessarily mean there is a problem either (I've had gallstones for more than a decade without any problem at all). But, they do need to get to the bottom of your symptoms, even if it is just... [ more ]
See all 10 replies...
J-Pouch ForumsWomen's Health & Pregnancy
started my period for the first time sunce takedown
lovedby2lovedby2
LisaB827 Thanks lovedby2! [ more ]
lovedby2 It did take 5 months, it was nice, but I have been in a flare up now for a month since starting. Not sure if my period is the cause but not looking forward to this becoming a norm. My GI said the 5 months was not concerning because of all that my body had been through. Good luck and find as much relief if you can. I experienced heavy bleeding More than usual bloating Sharp pains in the abdominal area Headaches Inflammation flare up Very tired Good luck and find thubgs [ more ]
LisaB827 It took 5 months before your period came? I'm 5 weeks post take-down, and I have been concerned since my period is 2 weeks late. My doctor did tell me it could take a few weeks before it comes, but I didn't expect it could take months. From the sounds of it, it looks like I have can look forward to much worse periods...At least now I'm prepared. Thanks for all the information ladies!! [ more ]
See all 9 replies...

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bjohnson@j-pouch.org

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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