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J-Pouch ForumsPouchitis
bactrim dosage?
M MITCH
tatunbaba That is interesting, first time heard of using bactrim to fight pouchitis. May be some time I'll give it a try. Another unusual antibiotic my doc used. One is Doxycycline : did not work . Second is Moxifloxacin : a rather new drug gave me moderate result. [ more ]
John95 Bactrim usually works very well for me, but I take double strength twice a day. Maybe single strength will work for you. Cipro gives me horrendous joint and tendon pain, and Flagyl gives me nausea and vomiting, so Bactrim is my standard go-to antibiotic. What does your doctor say? [ more ]
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J-Pouch ForumsGeneral Discussion
urgency
S Stone
Stone Thank you so much for your input. It was a blockage but its all ok now. I had some hot tea and I feelmuch better. Sometimes you don't know whats happening until its all gone. Its like my mind just shut down. I was just so stressed out and scared. Im glad thats over with. Thank you all again for caring so much God bless. [ more ]
TE Marie You could also have IPS, Irritable Pouch Syndrome. It's like IBS but called IPS when you have a pouch. I take antispasmodics for mine as well as antidepressants which can help as well. If it might be an obstruction, as mentioned above, a glass of white grape juice or apple juice can help get things moving as well. The other things suggested are great to do as well. IPS is another possibility. [ more ]
BarbieG Sounds like you are having spasums. Try Levsin or Ativan, scripts. Are you passing just gas? Try OTC gas relievers. Try to keep busy & your mind off of the bathroom. You could have a blockage also. If you start getting pain, call your doctor. I find walking and stretching can move a blockage. Drink hot green tea & don't eat anything untill you pass something if you think you have a blockage. [ more ]
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J-Pouch ForumsGeneral Discussion
Physician rcommendation
M MJFMJF
BarbieG On the Home page there is a link "FIND A SURGEON" in a blue box. Try Castle Connelly Top Docs, too. Try these links. http://www.fascrs.org/physicians/Affiliated_Groups/ Good luck. Just make sure your surgeon has extensive experience. Like hundreds of happy patients. [ more ]
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J-Pouch ForumsPouchitis
Chronic Pouchitis and Pain Management
NeonateRNNeonateRN
NeonateRN Every biopsy I have has shown no crohn's in my pouch...ulcers, but no crohn's. Of course, I have't been scoped or had a biopsy since June 2012..8 months ago [ more ]
SLC Are you sure it's not your Crohns in your pouch? I am confused? The tests always come back no to Crohns but the Docs say they see it in my pouch and it is Crohns! How do they know!? S [ more ]
NeonateRN Jan- It hasn't been easy, but without my income, we would be living at one of our parents' houses. And I refuse to go on disability, at least not right now. We want to adopt a baby in the next year or two. And I do love what I do. Unfortunately, my "resume" isn't the type you wanna bring up to potential employers lol. I will see what my GI thinks about my pain and diarrhea due to pouchitis. He knows I do not want a permanent ileostomy anytime soon. I am only 30, so body image is important to... [ more ]
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J-Pouch ForumsGeneral Discussion
Calmoseptine
JD Jeff D
Jeff D Both my procedures were completed at the Hospital of the University of Pennsylvania. [ more ]
mgmt10 Welcome aboard! I cant live without my Calmoseptine! I see you are in Philly. Where did you have your surgery done? I had mine at Jefferson University Hosptial. [ more ]
Donna H Hi Jeff, I love Calmoseptine as it heals and cools. I am still using it after 17 years. Some of us take much longer to heal than expected but things do get better. Stick around here and ask questions for anything and everything. Chances are someone is going through or has gone through the same situation as you. Use the "find" tool for specifics - this can really help to pinpoint some answers for your needs. You will meet many wonderful people and am so happy you found this site. You are... [ more ]
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J-Pouch ForumsPouchitis
pouchitis?/ scoping
L lesrich1
lesrich1 What you say is true. She had me on 1000mg Flagyl. It wasn't easy but good results. [ more ]
Jan Dollar Think of it this way, you and your doctor are members of a team, working to improve and maintain your health. So, you don't have to feel awkward about having some ideas of your own, particularly since you felt relief from the course of flagyl. Still, you don't have to be making demands and telling your doctor how to do her job. You can say, "I'd like to try another course of Flagyl before we do anything invasive." she can then tell you why or why not that is a reasonable approach. If she... [ more ]
lesrich1 So an update: The Flagyl worked...temporarily.I finished the medication Christmas and the symptoms have reappeared a few days ago. They begin in the morning. The doctor's office has called and sent a letter in regards to the scope I canceled and haven't rescheduled. Anyway, I have scheduled an appointment with her for Monday. She will push for the scope and I will want to do another round of meds before a scope. Should I just do it? FYI: There have been times I've begged my doctor (a... [ more ]
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J-Pouch ForumsGeneral Discussion
Working out
B Blairisking
skn69 Blair, I was an avid sports freak and worked out nearly daily..At one point a friend of mine (fitness coach) put me on amino acids to help build up my muscle mass...I had lost a lot with all of the surgeries and bedrest...and I had absolutely no problems...but, and here is where I am 'over'cautious...go slowly, take it easy on the weight and do not overdo things like squats, leg press, invertion trainning (especially with weights) or any lifting that could put excess pressure on the rectal... [ more ]
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J-Pouch ForumsGeneral Discussion
wellbutrin sr?
W wiggles
Laurie49 Wiggles, stop worrying about the "what if's". You are creating problems before they exist. The expert said "usually", it's just as easy to believe the odds are in your favor. [ more ]
Scott F *Some* slow release formulations are fine for J-pouchers, but your doc needs to verify that they are designed to be released and absorbed in the small bowel. If your transit time is very fast that can also create a problem. [ more ]
skn69 No time released, slow release, coated or any pills that say 'stomach safe'...that just means that they take longer to 'melt' in your digestive system and you risk 'spitting them out' whole... Liquid, normal tablets, gelcap, effervecent, softgels etc ...or you may not get the dose that you need. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery Tomorrow :(
L LisaB827
D. Nocerino Stay strong! Everyday will be a better day and it will be over soon! I had mine done at Mt. Sinai Toronto so if they're similar then staying in the hospital isn't so bad. Just bring as much stuff as you can that makes you occupied and happy. Good Luck!!! [ more ]
Twinstar I hope everything went well! My girls were 11 months during my first surgery and I barely saw them while I was in the hospital- so hard. But, it made coming home to them that much better. I hope that you're reunited soon [ more ]
TE Marie Great! I hope you and your stoma work as well as surgery and recovery. [ more ]
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J-Pouch ForumsGeneral Discussion
National perinium day
skn69skn69
Jan Dollar Progress by returning to the basics! What a simple solution... Jan [ more ]
skn69 Jan, Apparently in England they have lowered the stats from around 50% to less than 10% for episiotomies by changing the birthing position from the standard one (which is very good for the midwife of Obs/gyn but lousy for the mother/baby) to giving birth on your side! Yup, they showed the devise and appently they have a really good success rate with it (fewer episiotomies, fewer post partum complications)...here they are working on getting mothers to give birth on hands & knees (easier... [ more ]
Scott F CT- If you have to ask, you can't afford it. :-) [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
MsSterl - thinking of you
J JillM
rockandroller I'm so sorry honey. I "felt" pregnant every one of the four times we did IUI. It's the hormones. I agree with you it's terrible the financial and other hoops needed to go through to adopt. We had to look at what money we had avaialble and decide to EITHER spend it on adoption or on a single try of IVF and we went with the IVF. Any chance you can try it again? Were you able to freeze any for FET? We were not because they didn't get enough eggs for any to be leftover, but many women do. Big hug. [ more ]
clz81 so sorry to hear your news :-( i was excited along with you reading your posts the last few weeks. i hope you can find peace with what has happened and as jill said find a path to parenthood soon. [ more ]
JillM I'm so sorry. I can't imagine your disappointment. Please be kind to yourself right now. As for adopting, there are many ways to adopt that aren't so expensive. We were well on the path to adopting - even had a home study done - so we learned a lot. Adopting out of your local social services agency is often free or nominal in cost. Wile newborns aren't always available, you never know, and you may find an older child you would fall in love with. Here in MA if you adopt out of children's... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
IVF, Twins and J-pouch
H HeatherHolland
rockandroller Agree with everything JillM said. We put back all three of our embryos as we knew we wouldn't have another shot at IVF or even freezing and using later due to cost, with the knowledge that we could have twins, triplets, or something more (and being ok with advise to reduce if needed). We evaluated and made the decision best for our family, just like we did when considering the likelihood of Down's (pretty high with first pregnancy at 39) and M/C and of course worst case with pouch (lifetime... [ more ]
JillM Actually, "easily end up with twins" isn't necessarily so. The great thing about IVF vs IUI is that you have some control over the number of fertilized eggs you introduce. When you decide how many embryos to transfer, consider all your options, and all possibilities. When we did our first IVF we transferred two embryos figuring if we ended up with twins that was ok. We were warned against higher order multiples, so we didn't transfer more than 2 because then the only way we would get more... [ more ]
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J-Pouch ForumsOstomy & Skin
ostomy blockage symptoms and treatment?
R rncrowdis
liz11 any kind of moving and twisting... though he probably isn't up for much of that so soon out of surgery. also narcotics definitely slow down the gut. So the sooner he can reduce his pain medicines.. the better. overall.. how is he doing. I know this was a big surgery and you were very concerned. Plz let us know. wishing him the best. [ more ]
skn69 Hot tea, a lot of walking around, salty clear soups, heating pads, massage...and a lot of fluids in general...Especially warm ones...I do well with a hot water bottle too. Sharon [ more ]
WinniethePooh I drink Grape Juice when I get nausea from blockage symptoms. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Painful CT
S Subzeromambo
Subzeromambo It is four days later and I am still pain free. I have another scope scheduled for the 7th. Bms have doubled but it is sooooo nice not to have pain! [ more ]
CTBarrister It's called volumen, which is a barium sulfate suspension, and the test is called a CT Enterography. It should not cause abdominal pain in the normal course. [ more ]
liz11 So you had the iv contrAst? Right? Seems like you you might have had a reaction to the contrast. You need to speak to your doctor about this so you know for the future. Also sometimes for me that barium junk you drink seems to clean out the gut, gets things moving, resolves partial obstructions. Wonder if maybe that is why you feel better? [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Lets get this started!
Allie86Allie86
kdub Hello Allie, ladies! Similar story for me, I am 31, J-pouch at 21. I think it's excellent that you are pursuing pre-conception appointments with your doctors. I also have epilepsy, so the anti-epileptic drugs meant that pre-conception planning was essential, but I think it really helped ease my mind relating to the J-pouch related issues as well. I've been trying for a year and a half and started seeing a fertility specialist about 6 months ago. We did the whole work up, and luckily, my HSG... [ more ]
shebefergy Ah, I should clarify. I had a illeoanal anastomosis, so in my mind, I think of my j-pouch as a pouch. [ more ]
JillM Actually I had my pouch removed before getting pregnant. So I had a perm ileo for both pregnancies. I did have a near total obstruction with the first pregnancy, but it was resolved without surgery and my son was full term and healthy. Second pregnancy no problems, also full term and healthy girl. First pregnancy no morning sickness, a little queasiness here and there first trimester. Second pregnancy none of that but nothing tasted good - I didn't want to eat at all the whole pregnancy. I... [ more ]
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J-Pouch ForumsGeneral Discussion
Cholestyramine
Holly MHolly M
Subzeromambo I put mine in orange juice, mix very well and chug it down as fast I can. Follow the directions carefully about when to take it. always take it with lots of liquid. meds should be taken one hour before or four hours afterwards. Some docs want you to take it before a meal. It really works well. [ more ]
Holly M thanks for all the good info. I do have problems taking stuff that tastes awful, so if I get it will def try it in applesauce. [ more ]
kangaroo woman A colleague of mine had to take it for a while after she had her gallbladder out to decrease the diarrhea. She said mixing it with water was awful and made her nauseaus. She mixed it with applesauce and said it wasn't bad to take at all...couldn't taste it. Please try that to deal with the palatability issues. [ more ]
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J-Pouch ForumsGeneral Discussion
Illness
ManchesterManchester
Jan Dollar You can delay it a few days, if you need to. If this is just a cold, it should be OK, but if this is the flu and you have a fever, best to delay it until you are feeling improved. You can put a call into your doc tomorrow and get advice. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch- pushing a lot
ML Midnight Lady
Pixie I use a hegar dilator. I read some posts that some people just use their finger, but for me the dilator is easier. If you have a chronic stricture you should see if you can start dilating at home. It may be able to help you empty more easily! (I know that bathroom through a straw feeling. Gets old really fast.) [ more ]
jeane Pixie, What do you use to dilate? My surgeon frowned upon this but he was not trying to go to the bathroom through a straw. I still have stricture issues that they want to deal with via surgery as I also have cuffitis issues. [ more ]
Pixie If you look up my old posts I wrote a few about dilating. I had problems with a stricture after take-down and have to dilate it to keep it open. Originally I was dilating weekly, I have slowly decreased the frequency to once a month or so. At this point for me it's not like my stricture is closing the pouch off completely, but if I dilate it's like it opens it up that little bit more -- this allows me to empty more easily (less pushing) and I notice I'm not as gassy (incomplete emptying... [ more ]
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J-Pouch ForumsGeneral Discussion
Challenges after 4 surgeries.
HemingwayHemingway
Holly M Ernest: I am so sorry to hear you are in the hospital. Prayers are with you my friend. Keep us all posted and hope they find out what is wrong with you and soon. [ more ]
TE Marie I'm glad you are there, something is very wrong with a 7 count. Please have them test your poo for a c-diff infection. I just read your post regarding cipro. I've had c-diff before and they immediately took me off of cipro. Also a yeast infection can be caused by antibiotics. They give the ladies a prescription for one pill for yeast infections so I bet that's all you'd need too. I have no idea how you were even staying awake to go to the restroom with that count. I had to call 911 for my... [ more ]
Hemingway Well, I am currently in the Hospital. ER said my hemoglobin was down to 7 (12 is the desired number) so that explains many problems (weakness, exhaustion, insomnia, confusion). CT scan shows all normal. A scope, most likely, will be done in the AM. We will find out if it is the fissure or a different problem. A fellow IBD sufferer suggested having a test done my thyroid since it can cause autoimmune problems. I'll ask the doc to run some. TE Marie, thank you for the insight on SSDI. Everyone... [ more ]
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J-Pouch ForumsGeneral Discussion
unintentional overdose
skn69skn69
TE Marie This keeps getting worse doesn't it. I think I remember if you go to the country provided doctors it's first come, like a waiting in line set up. Is that right? Do you need antibiotics now? [ more ]
skn69 It is called Humex...like I said it is 5xs the U.S. price...As for nose stuff (or stuffy noses???!!!) they have a ton of sinus sprays (they love shoving things up their noses!) especially sea-water nasal sprays...But they don't help much if it is clogged up...they do on the other hand have a fabulous choice of cough syurps...all codine based and non prescription! Behind the counter none the less but still availible...go figure. ps...I have been cut off from my health insurance so for now I... [ more ]
Subzeromambo French pharmacies have more cures for nasal congestion than we do in the states. My French is very bad but just pointing to my nose and making a very stuffy sound was enough to have people running around and putting together day time powders packets you mix with hot water and a sleepy-time night version of the same thing. I wish I remembered the name! [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch Failure? Perm End Ileo?
KPKP
skn69 Good Luck Kp, I am just so relieved for you that you finally have some answers...let this be the end of the line for surgeries! Sharon [ more ]
KP I totally agree with both of you. The only thing I've heard the surgery called so far is a "pouch revision". I know it's for afferent limb syndrome and to cut out the prolapse. I'm hopeful that the surgery won't be too invasive, but I won't be shocked if it is. The quicker I have the surgery, the faster I get back to living a healthy life. Well, I hope so at least. I'm still waiting for the surgeon to go through the operating notes and pathology tests from my previous surgeries. [ more ]
liz11 KP.. sorry to hear you need another surgery but great news you have an answer. Your CC and Dr. Shen story sounds very similar to my initial time there. One reason I stick around on this forum is to encourage people who are really suffering.. even if just early after takedown (I had problems from day #1 after takedown)to go get help from the experts at CC. There really can be other things wrong other than the token diagnoses of just pouchitis and cuffitis. Also.. completely agree with your#1... [ more ]
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J-Pouch ForumsGeneral Discussion
Having Trouble With Night Time Incontinence
WJ Westcoast Joe
JeffDC My record was two on the same night. Luckily, my doc has never found pouchitis. I have noticed that night poops happen when one of two things happen: 1. I have a really bad night and am too exhausted to listen to the signals to wake up. 2. I am really tired (not necessarily at #1 levels) and sleep on my back. The times I wake up and am aware of the poop, I am on my back. I generally do not take much immodium or pepto bismol, which could probably help at times. [ more ]
Westcoast Joe Thanks everyone for your thoughts. I took some Imodium last night and did not have a problem. Hopefully it has gone back to normal. [ more ]
JJA Nighttime incontinence is always a surefire sign of pouchitis for me. Hopefully the right antibiotics will clear it up. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Is it possible to get Pouchitis before your reversal?
P PB
Jan Dollar Yeesh! I'd be begging for it to be drained months ago... Jan [ more ]
PB Hi Jan, Thanks for your reply. I shall definitely ask. I have a golf ball sized haematoma behind the pouch. It came from a bleed I had after the pouch creation operation. Annoyingly it wasn't spotted at the time, became a hematoma and I only discovered it myself when I ended up in hospital months later after it became infected. My surgeon has so far wanted to give it time to degrade on it's own accord. I frequently have scans to check it, and it is reducing, but just at a painfully slow... [ more ]
Jan Dollar Short answer, yes, and a prolonged diversion could even cause it. The blood could easily be from cuffitis though. Something to ask about with your next appointment. What is the reason for such a long delay for takedown? Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Butt burn
CH colleen h
jeane Warm baths and extra strength desitin or cocoa butter. [ more ]
kathy smith Warm baths/showers after bowel movements. I always liked Nupercainal - it's in the Preparation H section of drug stores. It's soothing going on. The active ingredient in Dibucane which your drug store might carry. A quick internet search indicates that Nupercainal is sold at Walgreens. There are many other ointments and salves to try. Maybe just get an assortment and see which one works best for your daughter. I hope she finds relief very soon. kathy [ more ]
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J-Pouch ForumsK-Pouch Korner
Help K pouch in UK
R roxycan
skn69 Hi Roxy, I would get in touch with the other members of this site from England...2 of them are having their K pouches done this month or thereabouts...find out how they got in touch with Prof and see how they feel about him and his team/surgery/hospial stay and results. Sharon [ more ]
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J-Pouch ForumsPouchitis
Pouchitis Solution
S STJ
STJ Also, please you don't need to pay for these expensive probiotics like VSL3. Just make yogurt and butter milk at home, that's good enough probiotic. Also, add fermented foods like home made pickle, kimchi, etc. STOP using Antibiotics. This should be the last recourse if above things don't work. No Smoking, No Alcohol. Little wine is OK. [ more ]
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J-Pouch ForumsOstomy & Skin
# of products used?
EL Eva Lou
liz11 I pretty much follow jills regimine. Definitely minimalist. Maybe adding a bit of powder and barrier wipe just around the stoma if im sensing some potential irritation. [ more ]
hart155 I use paste every change, and powder and barrier spray if there is irritation(maybe every 3 changes)This system gets me a whole week of wear so I'm happy with it. I do have to cut to fit each time and that gets old as it is always different. [ more ]
chiromancer It all depends... I have had three stomas a loop which took a one piece pouch, some cavillon spray skin barrier and stoma paste, maybe two or three minutes. Next was an end ileo stoma (with disconnected J pouch left in place) that was nearly flush which took an elaborate process (10 minutes+) to get one or two or very rarely three days of wear with all too regular leaks and some major failures. Now I have an end ileo with a really good stoma that was created/revised when my J pouch was... [ more ]
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J-Pouch ForumsGeneral Discussion
What do you take?
P pninas
pninas Hi Sue - I have the greatest admiration for you, doing the multi-day hike! Wonderful to hear what some of us are capable of doing after this surgery. It must have definitely been worth taking all the Lomotil! [ more ]
pninas Thanks Kathy. Good to know that Lomotil doesn't seem to have a real narcotic effect. Interesting what happens with prescriptions and those that don't need a prescription. Think I remember needing a prescription for Imodium when travelling to Mexico many many years ago. I'll try not to get a black tongue from the Pepto Bismol! [ more ]
suebear The only time I have noticed the narcotic effect of lomotil was after taking 72 pills (8 per day), on a 9-day, 100+ mile hiking trip. It didn't affect me during the hike, but stopping cold turkey after the hike left me exhausted. I'd do it again in a minute in order to do another multi-day hike. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Cola fix for obstructions
TE MarieTE Marie
TE Marie darealfoo, Thanks for the link, very intesting! [ more ]
skn69 They do Cola enemas too...not my cup of tea to be quite honest but I have done pouch lavage with sterilised sea water when I was having problems...it helped some (or maybe it didn't!)... I use hot tea with lemon, prune or grape juice and any other typical 'liquid plummer' for guts... Sharon Just beware...A partial blockage might give with the cola but a full blown occlusion may not like it at all. [ more ]
darealfoo http://www.ncbi.nlm.nih.gov/pm.../pdf/kjim-22-300.pdf Interesting read to those seeking a "coke" therapy [ more ]
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J-Pouch ForumsGeneral Discussion
itchy scaly skin on nose?
G Guest
rustyskyline I had this problem with itchy scaly skin on my nose as well. I went to one dermatologist after another most of whom suggested I try changing shampoos, soaps, after shave or other such nonsense. Finally I went to one that prescribed Desonide lotion (.05%). About 24 hours after applying that stuff, the scaling and itching was gone. It's not gone forever though, it comes back every few months and is usually associated with a flare up of my pouchitis. So now, I just throw some lotion on my nose... [ more ]
Midnight Lady oh.. he told me to STAY FAR FAR away from cortisone creams. Cortisone has it's own problems. (I had been to my primary care doc a few months prior and he gave me the cortisone cream, but I was leery about using it.. and rightly so.) [ more ]
Midnight Lady I spent all summer changing up laundry detergents, buying new eye shadows, mascaras, cleaning make up brushes more than normal, buying all new make up brushes, buying different and more mild face cleansers and lotions, etc. etc. while thinking all along.. what if it's related to the many years of UC (which.. is now gone due to having a jpouch) but complicated a bit by a later diagnoses of chron's (which I am for the most part, ignoring this diagnoses, except to think, that yeah, it could... [ more ]
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J-Pouch ForumsGeneral Discussion
C-diff...Jan?
mgmt10mgmt10
TE Marie Thank you for the update Marianne. [ more ]
mgmt10 Thank you all. We were with her all day. She is in liver and kidney failure. We have hospice for her now and she is on a morphine drip to keep her comfortable. We are a big close knit family so she will be surrounded with people who love her until she passes. The cancer was spreading quickly but it was this c diff infection that just pushed her over the edge. Crazy how someone can go down hill so quickly....just Friday she was playing cards with everyone. [ more ]
Donna H Oh, that makes me so sad. I remember taking my two boys to say goodbye to my father and I still become tearful. It is not easy but letting go and knowing she will be out of her misery is very consoling. I am sure she has angels waiting for her with open arms. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Night time frequency
R RichnhisHarely
Scott F Since this is a change for you, you should be assessed for possible pouchitis or other development. For many folks a course of antibiotics (e.g. Cipro) is sufficient to make it go away. I found that VSL #3 kept it under control for a couple of years. Some docs will treat based on history, while others will want to take a look through a scope first. [ more ]
RichnhisHarely I currently take at least 8 lomotil a day taking two before bedtime. Things just don't seem to work as they used to. Thanks for any advice Richard [ more ]
Megan I take Gas-X with my last meal and that usually helps me with gas at night... What meds do you take at night? I do 2 lomotil at night and that seems to keep things to about 1 bm a night for me. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch scope
Holly MHolly M
Holly M Thank you!!! I will call the doc in the morning. You are a wealth of info and I appreciate it so much. [ more ]
CTBarrister I would try flagyl, xifaxin and augmentin, those 3 are, along with cipro, the "Fantastic 4". [ more ]
Holly M The results came back from pouch scope and doc said everything looked good. I am wondering if being on cipro for awhile cleared everything up or would something still show up if pouchitis was present? I am back on cipro but think it is time to start on something else it doesn't seem to be working so well anymore. I will go back and check past posts and see which rotation CT recommends. [ more ]
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J-Pouch ForumsOstomy & Skin
general VS colorectal surgeon?
EL Eva Lou
Eva Lou you know, the more I ask around, the more I'm finding "specialized" surgeries having been done by general surgeons. Example- my nephew had to have half a lobe of one of his lungs removed at birth, due to a congenital defect in that lung. I just found out it was done by a general surgeon, not a thoracic surgeon! And this was at Childrens Hospital in Boston, where there are TONS of specialized surgeons. I realize that no surgery is "routine", but I feel fairly sure mine will be about as... [ more ]
Janita My original surgery for j-pouch was done in 1986 by a general surgeon and in 2007 the same general surgeon removed my j-pouch(thanks to c-diff) and placed an end ileostomy. Had lots of problems but mainly because I was so ill going into the surgery. My GI told me that if he needed any surgery including a heart-lung transplant he would let this particular GS do his surgery. Have not had good feelings from the 2 CR surgeons I have met with so I will stick with my GS for any more surgeries... [ more ]
skn69 Eva Lou, A little clarification...I didn't leave my colorectal surgeon...I moved to France and seeing him became a very expensive process although he has never charged me for a visit...I have to fly in for a check-up (about +5000miles) so it was not a monthly thing...when I started to have serious pouch complications and my First French surgeon gave up on me I found a 2nd one (colorectal) who appently was not the most pouch-friendly kinda guy...the surgery was a collosal failure (I could not... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pregancy and increase in BMs
DB Darcy B
Darcy B Thanks, I did end up spending a few days in the hospital for dehydration, but the dr.s finally decided what was "safe" to give me. I guess Flagyl is safe but only rectally. It seems to have worked. And now thing have defiently slowed down. I think i am finally expierencing the "slow down" of the bowels that u usually get in pregancy. Thanks for your help. [ more ]
clz81 Darcy, I replied to your other post regarding antibiotics. Augmentin or amoxicillin are the safest ones to take that will also treat the pouchitis. Flagyl is ok to take in your second and third trimesters. I was on a low dose of Augmentin my entire pregnancy for chronic pouchitis. [ more ]
Darcy B Thanks.....that is what i am starting to think as well. It is slowly getting worse as well as an increase in urgency. So frustrating, trying to drink enough liquids in a day to keep hydrated with it is contiunally coming out of both ends! It has been so bad that i have taken lomitil a few times (I dont think its recommended in pregancy). Is there any antiboitics that are considered safe to treat pouchitis in pregancy? I have an appiontment with my phyisican tomorrow. Hopefully get this... [ more ]
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J-Pouch ForumsGeneral Discussion
Adapting to Food is so Hard!
fqfq
Megan I lived on mashed potatoes and scrambled eggs for 6 months before graduating to more solid foods... I couldn't tolerate meat or veggies for a year or more. I know this doesn't help much, but at least you know you aren't alone! Hopefully it will start to get better for you soon! [ more ]
wiggles fq, im living on only ensure. i wish i was you. lol [ more ]
suebear It took me a full year of adaption too. If you sense your pain is gas related, I'd take a good look at your diet. I had severe gas early on and had to alter my diet, it worked, until I could safely add those foods back. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Back on Cipro + Flagyl
SpookySpooky
Spooky The GI didn't mention it; he only said there were no ulcers in the pouch but certainly that doesn't rule out an ulcer higher up. [ more ]
CTBarrister Spooky, Has the possibility of a bleeding ulcer been discussed? [ more ]
Spooky The odd thing with me is that the symptoms I'm getting are so intermittent, and I think that is what is puzzling the GI. But the blood is obviously coming from somewhere; you can't have significant bleeding without a source. Hopefully the MRI will shed a little more light on what is going on, although right now I'm still waiting for the hospital to call me back with an appointment date. I really hate waiting. [ more ]
See all 42 replies...
J-Pouch ForumsGeneral Discussion
immune system
skn69skn69
Manchester I was at the docs to check my sugar levels and I asked him about the flu jab and he just said wait here and just went to the fridge and got one. 2 mins later and I was done. [ more ]
skn69 I will pop in to the pharmacy tomorrow and see if he has any left...Funny thing is that hubby gets the letter with a coupon for a free one and he doesn't even bother to go get it! I could have used it...will try...the epidemic hasn't hit Paris yet so for now there are very few cases (mostly in the south where I am not)...but I work in 3 big schools and am definetly more exposed now than I was over the last 3yrs being a homebody. One of the joys of going back to work. Sharon [ more ]
mgmt10 I cannot believe my hubby and I dodged the flu bullet. Two weeks ago my two kids had a case of confirmed flu. Totally went thru the whole school. I never get a flu shot. I think I got it once back when I was on Remicade. They are still saying here to go ahead and get vaccinated that its not too late. Carry lots of hand sanitizer!! I have a whole collection of pocket size wonderful scented ones! [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Vomiting and liquid stools
AlexisAlexis
Alexis Finally home from hospital. Feeling better but I feel As if my jpouchbis sore from all the diarrhea. Anyone felt this before? Anyway doc did ct scan to check for any inflammation and it came back Negative which I am happy. [ more ]
Dog I had a Giardia infection after hiking and drinking from an unsafe water source. Surprise! I thought Giardia only took up residence in your colon. . .I was wrong. ER visit for fluids and medicine and I was back on my feet in a few days. But yeah, diarrhea with a J-Pouch caused me to dehydrate quickly. [ more ]
CTBarrister It is not the stomach ailment itself that dehydrates you, it is the vomiting and the diarrhea. You lose all those fluids and the J Pouch, unlike the colon which preceded it, simply lacks the size and the power to ever fully assume the colon's function of replenishing bodily fluids via re-absorption. It is simple physics applied to the human body. Take a look at a picture of a colon and a picture of a J Pouch. It's comparing a 10 cylinder engine to a 4 in terms of water re-absorption... [ more ]
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J-Pouch ForumsGeneral Discussion
can prednisone get me into remission?
W wiggles
JJA A good GI will probably suggest ENtocort/Budesonide - a "designer steroid" with fewer side effects than prednisone. [ more ]
Spooky I hate prednisone. Honestly, though, I echo Jan and kathy: you don't want to self-medicate with it. The dosage is crucial and you have to taper down slowly. It's not something I'd even want to begin to figure out on my own. Definitely speak to you doctor. [ more ]
Jan Dollar Yeah, it was 40mg, with a fast taper, after 4 days. Thiswas for an arthritis flare, though. But, Kathy is right, that it is appropriate to bring up the subject of prednisone with your doctor, but he's the one who should decide if it is appropriate to prescribe in your case, and what dosing schedule is. If he does not know how to prescribe prednisone, you've got the wrong doctor! Jan [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
how we age?
skn69skn69
JJA Well, after 19 good years with my pouch, chronic pouchitis has reared its ugly head, and only responding marginally to everything they are throwing at it. I teach an aging class, where I am usually optimistic and say, "Aging only happens to us if we are lucky" but with all the pouch stuff I have dealt with the past 2 years, the cynic in me is saying, "Getting old sucks"...It's not for sissies, anyway [ more ]
skn69 Mom's are sweet! Sharon [ more ]
nocolon-2000 A few years after surgery, I started noticing arthritic pain, etc. Thirteen years later, it's still there but under control via meds. My issues with my j-pouch and subsequent Crohns are not going to go away. Since it's an immune system issue, I expect I will continue to have immunity issues. But I try not to think about it. On a funny note, I called my mom today and she said she had heard I was sick. I told her that I have strep throat (or tonsilitis for my non-tonsiled self since the strep... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
got a prescription for vsl3
W wiggles
LionsPride I take the DS, my insurance covers it - well some it. I think 30 day supply at that dose costs me something like $100 give or take. It won't help you unless you're starting from a clean slate. The idea behind any probiotic is that (I'm generalizing before someone jumps on me) bacteria are territorial. By populating the pouch with 'good' bacteria (that doesn't hurt you, and in fact can help) it helps defend 'bad' bacteria from taking root and causing pouchitis. So by that logic, unless you're... [ more ]
TE Marie LionsPride, Are you taking 2 packets of DS daily or regular strength? I'm on a 3 month snow bird vacation and I'm seeing too much of the bedroom and loo. I'm treating my cuffitis but think there's something else. It don't think the c-diff is back but it maybe or it could be pouchitis with cuffitis. I'd like to take a round of flagyl but don't think my Internist or GI's would write me a prescription without seeing them. It's used to treat c-diff and flagyl so if I'm not better by tomorrow I'm... [ more ]
LionsPride I would recommend taking it starting 2-3 days before you stop your antibiotic treatment, but then only if you feel like the antibiotic worked and you're pouch is clean/pouchitis free. I find it's less of a shock to the system and I've had better results when doing that. It takes upwards of 30 days for everything to stabilize, one of the initial issues you might notice are an increase in gas while you adjust, but give yourself 30 days before you stop taking it. DS, or any vsl, does need to be... [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
does this look like a good supplement?
G Guest
Nice Nurse one interesting fact I have learned is that xanthan gum is a laxative, or rather it is a key ingredient in laxatives and in gluten free foods. found out the hard way. so be aware. [ more ]
Randi M I also consulted a nutritionist during colitis flares as I was unable to eat anything. I would make these smoothies 2 x a day the product was from a company called metagenics, additionally I would add a scoop of brown rice protein from jarrows, frozen peaches, banana, and either almond or rice milk. http://www.metagenics.com/prod...ltraInflamX-Plus-360 This combo helped me sustain nutrition. I'd still advise you to consult with a nutritionist. [ more ]
Guest no its a protein shake with complete nutrition. vitamins minerals protein calcium potassium l-glutamine and a complete amino acids profile etc. just wondering if it looks pouch friendly... [ more ]
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J-Pouch ForumsGeneral Discussion
Unexpected EUA....maybe crohns
Uc-DanielleUc-Danielle
Uc-Danielle I bet you are steroided out I would be. I hope that something works my wound from my incision infection (transverse scar) was awful. Took forever to heal but he said yesterday that it looks great and I've been bandaid free for 2 1/2 months now! You are right it is reassuring and I needed his typical hug today Bc I was nervous and I didn't get my "there's my girl give a hug" but Sara was there who was in all 3 surgeries which was somewhat assuring. I've been told and have seen that when you... [ more ]
Jan Dollar I know hearing Crohn's must really make you want to scream, since it means no further hope for a cure, but now it is all about management. But, once your shock wears off, you may feel some relief to know that there is a reason for all of this, and perhaps a new direction for treatment will be presented. The focus will be on inducing remission, then maintenance treatment to prolong remission. That is the key. Crohn's does not mean you will lose your pouch (although that is a possibility for... [ more ]
liz11 danielle.. I know .. you really must always see him before they put you out. Its just reassuring. I am sorry to hear what he found but it does maybe explain some things. Dr. Remzi has injected the steroids into my wound a few times. Last time which was just 2weeks ago, I think he went for the super-mega dose because I am still feeling all "steroided out" from them. anyways.. dr. shen and dr. remzi are quite the team.I am sure they will come up with a good plan for you. In fact, my stupid... [ more ]
See all 5 replies...

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William J. Johnson
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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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