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J-Pouch ForumsHelp! Need advice now!
jan or rachel, anyone else too..
DoughBoyInPHL78DoughBoyInPHL78
CTBarrister The force-feeding of castor oil was the favored method of torturing political dissidents by the 20th century Italian fascist leader, Benito Mussolini. Today, the Italian terms manganello and olio di ricino , even used separately, still carry strong political connotations (especially the latter). These words are still used to satirize patronizing politicians, or the authors of disliked legislation. They should be used with caution in common conversation with Italians. The terms Usare l'olio... [ more ]
Scott F Jan, I'd almost succeeded in forgetting about castor oil, and now you've rekindled the memory. . I have never put anything else in my mouth as vile as that stuff! [ more ]
Jan Dollar I think that the fact that you basically are just taking a "swallow" of MOM, there isn't much point in having a bunch of flavors. It is pretty much benign tasting (like Maalox); not like that vile castor oil I used to have to take for a barium enema x-ray. Concentrated should be fine. Just don't exceed a normal dose. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
2 embryos or 1
E elliepouch
JillM You may need/want to see the quality of embryos to decide. My first fresh cycle I had 3 day 8 cell embryos so we transferred the two strongest. We all believe both implanted based on hormone levels but by 8 weeks we had one - he will soon be ten. When I did my second fresh we had a 6 day hatching embryo that the techs and dr said had a 90% chance of implanting. Since I already had a two year old that made the decision to do one very easy. That embryo is My feisty 7 year old girl whose... [ more ]
elliepouch Thank you both for your responses! It's true that it is a deeply personal decision and its hard to calculate what you can handle, not to mention have any sense of what you will actually get. I do appreciate hearing your thoughts though. Because of the specific natures of each of our situations, I feel that the thoughts I get here are often the most realistic, partially because people know that it is an individual thing and we all know what it is like to have things go differently then the... [ more ]
kdub Now that the babies are asleep... a little more information. I struggled with infertility for 3 years and we did 6 IUIs. The 2nd and 6th one were successful, with the most recent resulting in twins. I am just a lady who had twins with a Jpouch, so I recognize that this is NOT an acceptable sample size to make any science-based decision Unfortunately, there are few if any studies performed with women in our situation so I guess we all work with what we get. As I mentioned above, I had quite a... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
infertility after j pouch
B Bee26840
JillM I had fertility issues post pouch removal. Massachusetts has full coverage for IVF - but you have to do 6 rounds iui first. I got that waived because of the risk of high order multiples. One fresh cycle we transferred two embryos and got one beautiful boy who is now almost ten. We did a frozen cycle that I miscarried early. Second fresh cycle we transferred one hatching embryo at day 6 and she is now 7 :-). :-) [ more ]
Bee26840 Hi again all! Thank you for the continued discussion on this threat - the information and support is really helpful! To update you, I found another MD to refer me to the RE specialist so now I am just waiting to get an appointment date/time. Meanwhile, another cycle has passed with no success. Knowing that now I have a referral and a plan makes me feel much better. [ more ]
rachelraven I feel lucky. It took about 8 months for me to naturally get pregnant with my daughter. A year after my C section, I had a huge mucoid ovarian cyst on my left ovary. It was removed by the local fertility specialist, "the baby maker," because I sort of fell into his lap as a patient. After he removed the cyst in an open surgery, he came out to talk to my family. He pointed to my daughter and said, "That's Rachel's biological child? She shouldn't be able to have kids... That child is an act of... [ more ]
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J-Pouch ForumsGeneral Discussion
leakage!
W wooly-bobs
Scott F I find that Lomotil at bedtime helps. I also use psyllium with dinner. Is it possible you have a touch of pouchitis? Have you tried VSL #3 or a course of Cipro? [ more ]
Fosty Maybe some lomotil or Imodium at nighttime. Should help the leaking and get a better sleep. [ more ]
thumprhare Perhaps bedliners used in healthcare. I see them often sold like puppy pee pads. Goodness the things we do...but hey they work. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Intercorse painful on the backside of vagina wall.
H Halo52208
Halo52208 Thank you guys. My husband now understands that there is days if there is too much butt pain he has to wait. Found doggy style less painful. Sometimes it's psychologIcal and he finds massaging my entire body helps relax me. You guys are so great hear. Thank you [ more ]
skn69 Hi Halo, First off, I am so sorry...this is adding insult to injury...the one thing that we should be able to finally enjoy without stress or pain and it becomes both stressful and painful instead of pleasureable...not fair. I have a k pouch (same pouch just hooked onto the abdomen with a stoma exit and a catheter for intubation and removal of gas and matter)...but a pouch is a pouch. I had a full proctorcolectomy with the bottom end closed off...35+yrs ago. Whenever you have people inside... [ more ]
TE Marie I know how you feel. I explained it to my husband a long time ago that when in j-pouch pain the last thing I feel like doing is putting anything in my vagina. Jan is right about the different angles and it might be better if you were on-top or driving, for a while. Good Luck [ more ]
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J-Pouch ForumsGeneral Discussion
Another day, another procedure !
JeffsmomJeffsmom
Jeffsmom Lab lover, thank you! How many Labradors do you have? My breed too. Love them so much. Nothing brings a smile to my face like a labrador! [ more ]
lablover Sending good cyber wishes. [ more ]
Jeffsmom Hi Sharon, I was hoping you would call! I'm a complete wreck about this. The surgery was going to be tomorrow, but they pushed it to Friday, which actually is better for me with my dog business. I concerned about how much pain Jeff is going to be in. They are putting the drain in in the OR. I'm hoping they keep,him over the weekend. Not sure how long that drain will be in but that thing better drain our fast. I was surprised the doctor called me personally! I like him, he is very calming and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
help, Stomach cramps and little stool
N newpouch
ashish1521 I have similar issues. While i have been taking j pouch since a week, this is the first time i have cramps in my stomach. Also last night i had a burning sensation early morning. Does it has any side effects? I have been taking hot fluids only whole day as suggested by you but no relief as of now. Thanks [ more ]
dtmack Partial blockage or blockage. Try drinking warm fluids (coffee, tea, soup). Stay away from solids until it passes. Warm baths and tummy massages can help. Walk a lot. If pain gets to high or you start to vomit, head to the ER, These suck. Feel better soon. [ more ]
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J-Pouch ForumsGeneral Discussion
Itchy bottom and hemorrhoid question?
aka KNKLHEADaka KNKLHEAD
aka KNKLHEAD Thanks, Rachel! For now it's dumb it down, and trial and error to see if I can figure this thing out! [ more ]
rachelraven You may find the itchiness worse because you are not using any barrier creams, truthfully. Certain foods may make itching worse, too. For instance, I avoid them now or eat them sparingly, but when I would eat a bowl of granola (which I love) or too many nuts, things came out like sandpaper, and I'd get tremendous itching from it. Have to go quite easy on those things or I run into that problem. [ more ]
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J-Pouch ForumsGeneral Discussion
What supplies do I need?
crankypantscrankypants
Scott F Although I've never had an ostomy, I was similarly mystified (and a little frightened) when I thought I was heading that way. The ostomy nurse at the hospital was kind enough to meet with me and demystify the equipment and the process. I was much more comfortable after that. Perhaps you could arrange some time to learn about what's coming. [ more ]
crankypants Having not seen an actual bag in person, it's all very mysterious. I have my initial meeting with the surgeon Friday and am hoping to leave with some sense of how the supplies work. Or, more likely, that will happen as you said, in the hospital post surgery. [ more ]
rachelraven I got all of my tips from the nurses at the hospital before I left, and had scripts of course for all the stoma care products. Used skin prep (makes a protective layer on the skin), plus stomahesive paste around the flange "hole," the piece that attaches to you first. Be sure if using a 2 part system (flange and bag) that you get a good "Tupperware seal" between them; once, early on, I didn't and in a public bathroom, my bag just fell off in the stall when I went to empty it, and stool went... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Confused, would appreciate thoughts
R robertu
rachelraven I think you'll find a wider range of BMs for our population than "4 bowel movements a day." If you make that your expectation, especially early on, you will likely be disappointed. I started at about 10+ a day, at first, with nighttime awakenings, until I deferred going and slowly the pouch could hold more and more. A "fresh" pouch, as I've been told, holds about a pint at a time. What you eat influences the number of trips, too. There's a big learning curve. I'm nearly 25 years in, and... [ more ]
Scott F Most of us here chose a J-pouch over a permanent external ileostomy. A J-pouch adds complexity and a longer list of things that can go wrong, but it has substantial advantages (when all goes well) in terms of body image and independence (e.g. from ostomy supplies). The only time an external ostomy would have been more convenient for me was when I had to deal with an asian squat toilet, which will one day make an amusing essay. Some people go directly to an external ileostomy and never look... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy & Leakage
J JLG5045
clz81 Your frequency will definitely increase (with possible leakage) as the baby grows and pushes on your pouch. I was definitely going to the bathroom much more in the last couple months. I took Unisom to sleep so I wasn't waking with every urge to go to the bathroom. I never did have leakage though. The only time I ever had leakage was when my pouchitis wasn't controlled. Keep that in mind too as pouchitis is common during pregnancy. If your GI thinks your leakage is due to pouchitis, a quick... [ more ]
LoveLife Hi there. Try psyllium-seed shells. I use them whenever I have to much output. 100 % natural. [ more ]
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J-Pouch ForumsGeneral Discussion
excessive cramping and spasms
M MDS
Scott F If it's SIBO, the treatment course could be a few months, considerably longer than for pouchitis. [ more ]
Jan Dollar This could easily be SIBO (small intestine bacterial overgrowth). Symptoms are the same as pouchitis without the inflammation. The difference between SIBO and IBS is that antibiotics are needed for SIBO (just like pouchitis). Ask for a course of Flagyl or Cipro. You will know within a day or two if that was what you needed. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Recovering from takedown
aka KNKLHEADaka KNKLHEAD
Pouchomarx KNKLHEAD...sent you a few pm's [ more ]
aka KNKLHEAD Yeah, I think you can wait as long as you want from redo step 1 to take down. For you, it sounds like you could use a good break .. and it is likely you'll feel better and better. Since you take pain meds now, I hope that after a redo you feel well enough to get off them. Obviously, if you need them, you need them! I think I was good to drive three weeks or so from take down, but don't recall it being an issue, and after 10 days out from takedown, no pain meds, I'm sure I will have no issues... [ more ]
CeeeeCeeee I kept my baggie for a full year before having the takedown because it worked best for my work schedule. My summers were opportune for surgery/recovery because I was teaching. Looking back.....more than 10 years ago......I'm really glad I waited. My J-pouch was well healed and I had no issues transitioning to a connected system. I had no problem accepting the ileostomy because I finally felt so healthy compared to the years I lived with ulcerative colitis. In fact, if I needed to have a... [ more ]
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J-Pouch ForumsGeneral Discussion
Crohn's
R roxy75
clz81 Yes, that seems hasty to just start you up on Humira. From personal experience, when I was in the hosptial last year with an obstruction, they did perform upper and lower scopes (because I was chronically getting obstructions) and came back and bluntly told me I had Crohn's and wanted to start me up on Remicade or something. It was devastating, and I declined right away since I didn't think that was the right course of action. Then a few days later, I get a call saying all the biopsies came... [ more ]
Scott F I'd want to see if a course of antibiotics cleared it up first - just in case it's simply pouchitis that extended a bit beyond its usual boundaries. [ more ]
LisaT If it's possible for you, I would seek a 2nd opinion. I'm not a doctor, but it seems like a quick decision to start Humira. I was on Remicade for 21/2 years after a terrible bout of what my docs decided is Crohn's. After 21 days in the hospital, a microperforation of my pouch, and a fistula, we thought it was worth a try. One of the missing pieces were granulomas. Everyone is different, but I would like more information from my doctor. [ more ]
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J-Pouch ForumsGeneral Discussion
so depressed & confused
skallyskally
skn69 Lots of people do...it is among the fun symptoms and side effects...it could be anything from yeast (the itch) to mild irritation on through to a fissure (a slight crack in the tissue that burns like heck) to an "itis" (cuffitis...)...plus a whole lot of other things.. I would aim for the the simplest solution first and try some topical creams that cool and protect...I used an aloe based gel with built in local anasthetic on my poor angry stoma when it burned and ached...I got it in the... [ more ]
skally Thank you for your responses its real hard - but I keep trying just a couple of of other questions I now get a sensation just inside my anus like when I had uc , like an itchy spasmodic razor blade feeling which makes me want to go - is this right ?? secondly my butt gets wet and makes me sore but no sign of any stain / faetal output, just like a wet mucous - no stool leakage but still spiky & sore - is this normal ? [ more ]
Randers.USA Well said Sharon. And sending best of hopes to skally...hang in and try and stay strong. [ more ]
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J-Pouch ForumsPouchitis
Suggestions for Nausea
H hopetofeelnormalagain
hopetofeelnormalagain Thank you everyone for your input. I appreciate it. The last antibiotic I was taking, Levosquin, was not doing the job of clearing the pouchitis. After 8 days I finally told my doctor, hey I'm getting worse not better. He switched my antibiotic and I am taking it 2x a day. I started to feel better after 2 days on it. I was asking about the taste of antibiotic in my mouth. This is 24/7, it is not right after I take the pill. This particular medicine (Biaxin) gives me the sour taste in my... [ more ]
skn69 Although it can make you a bit sleepy I use gravol (the motion sickness medication (OTC)) for occasional nausea...to avoid the 'big sleep' I use the baby dose that dissolves under your tounge...just enough to take the edge off of my nausea but not enough to make me woosy or dopey... It also comes in liquid, chewable and adult swallowables. Added bonus is that it slows down your bowels as well. Sharon [ more ]
rachelraven If you're on Flagyl, it's a tough med for some. I list it as an "allergy," but I truly just have a super super strong intolerance to it. Within 24 hours I have intractable nausea and vomiting. It even landed me in the ER once. I just refuse to take it now. But many just find upset stomach/nausea as an issue. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
35 wks 5 days and need advice please
C Chayes
kdub I'm so sorry you are in pain! Look at it this way- every day you can keep the little one inside of you, the better it is for your baby. Take it one day at a time, and if at all possible, try to keep to your bedrest instructions. I had twins, and had a really hard time eating toward the end, too. Smoothies helped to get much needed calories in, and I almost lived off of the "wellness bowls" from Jamba Juice in the last few weeks. They were similar to smoothies, but had oats and peanut butter... [ more ]
Chayes Thank you for your reply, I go in to see my OB on Friday and I am feeling a bit better, still tired and unable to return to work at this time but my appetite is getting better just have to eat smaller more frequent meals. [ more ]
lholdem Hi Chayes, I had a similar problem when contractions hit for me, about a week before I was scheduled for a C-section. I was super miserable and hardly ate due to the pain, nausea, diarrhea, etc... Also lost like 5 pounds that last week. What got me through was some leftover pain meds from surgery (oxycodone I think). I checked to make sure it was "safe" for pregnancy first. Also took zofran. I was able to keep some food down and somewhat function after that. Without it I was basically... [ more ]
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J-Pouch ForumsGeneral Discussion
Stricture
M Mark01
Mark01 Thanks and I should have said but ive had it dilated about 6 times before but it wasn't working so we stopped. I'm waiting to see a surgeon but the waiting list is quite long What type of surgery would they do for a stricture? [ more ]
mgmt10 I dealt with a stricture after takedown. I had to have it dilated 5 times on different occasions. You should see your surgeon. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Menses and pouch
thumprharethumprhare
thumprhare Thanks for hanging in their with me , ladies. Hormones are still on the table...will see what pouch looks like then we will have a plan.. [ more ]
skn69 So sorry for all of the period related pouch trouble... I've had my k pouch since the age of 18 (54 now) so most of my adult life...and I've had a very physically active life. I used to feel as if my pouch was going to explode and my uterus was going to fall out my bottom...it felt so heavy and painful...cramps were legendary...my pouch ran like water and I developed a lot of ovarian cysts. In the end after surgery to remove the cysts and open up my fallopian tubes (they were blocked...one... [ more ]
rachelraven I know you said you're not a great candidate for birth control, but I truthfully believe your hormones are to blame for a monthly pouch out of control. I doubt so much that you truly get "pouchitis" when you have your period; I do think the hormones give you the issues that mimic it. At this point, I would say your best option is talking with someone in the gyne world about controlling your periods, in some way, shape, or form, whatever the safest way would be for you. Since it correlates... [ more ]
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J-Pouch ForumsGeneral Discussion
What to do about thrush
SolomonSealSolomonSeal
ks1905 I just got another script for Fluconazole/Diflucan, last time I took it I needed it for over a month. I thought it was my pouchitis flaring up but it was the Thrush. Fluconazole has made a big difference in only 2 days, I'm going to see how I feel after 14 days. I also have stopped Cipro and Augmentin, my new meds will be Entocort and Sulfasalazin. If that doesn't work then I'm going to try 6-mp or a Biologic. Nystatin did not work for my previous cases of Thrush. [ more ]
Jan Dollar Maybe a longer course is what you need. Call your doc for a refill. If a longer course does not work, you may need a systemic antifungal, like Diflucan. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Wits end.
MysticobraMysticobra
Mysticobra Thank you all for the replies and suggestions. I really do appreciate them. It was suggested I ask for an antibiotic. Well.... I had some from a previous problem.... Same problem so I took one and it wasn't three hours all the grumbling and cramping and running back and forth to the bathroom stopped. And as I wake today I am in no distress. I just find it amazing. Coincidence? Could be. I don't know. I am making an appointment tomorrow. I have to let her know what is going on. But as I wrote... [ more ]
mgmt10 What you're describing sounds very much like what I went through when I had a stricture at the anastomosis site. Once I had a series of dilations, it was resolved. A digital exam by your surgeon can tell if that's what it is. Unless it's higher up then a scope would be needed. [ more ]
TE Marie There is something wrong with your pouch or you wouldn't be in such hell. You need to see your GI or surgeon and get their help. Have you tried calmoseptine for your butt burn? It is hard to figure out what to eat and when. Have you tried Imodium and/or metamucil? Is there any other position that you can do, where you work, that doesn't require all of the pressure on your j-pouch? I know asking about that is usually easier said than done. I don't eat much meat anymore but when I do it's... [ more ]
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J-Pouch ForumsGeneral Discussion
J POUCH IBS, OCCASIONAL DIAHRREA
MIKEEYMIKEEY
MIKEEY MGMT10- Thanks again, stay well and continue to do well. God Bless. [ more ]
mgmt10 Pancolitis just means the entire length of the colon is effected. It's still UC. There are different degrees of severity. Mine was severe. I am doing very well now five years later. Knock wood....I have not had pouchitis or any issues. I had a GI dr. who was a firm believer in the therapeutic properties of Pepto Bismal. Hope it continues to help you. As for the cheerios, maybe try a little bit and see how it goes. Who knows, you may be fine with them. Just do it on a day where you will be... [ more ]
MIKEEY MGMT10-THANK YOU SO MUCH FOR YOUR RESPONSE. YOU ARE ANOTHER PERSON TO TELL ME CHEERIOS ARE BAD FOR YOU, SO I WILL DEFINITELY KEEP AWAY FROM THEM AND TRY SPECIAL K, NEVER TRIED THEM SO MAYBE THEY ALSO WILL AGREE WITH ME. I SEE YOU HAD PANCOLITIS , WHAT EXACTLY IS THIS? I HAD MY COLON REMOVED AND HAVE A JPOUCH, HAVE HAD SEVERAL OPERATIONS AND HAVE NEVER BEEN THE SAME , EVEN VISITED THE CLEVELAND CLINIC AT ONE TIME, MY GASTRO DOCTOR HAS TRIED SO MUCH TO HELP ME, AND DOES NOT GIVE UP, WE TRY... [ more ]
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J-Pouch ForumsGeneral Discussion
College and a jpouch
N newpouch
NanJ Just realized I didn't really answer your question about tips. I would avoid corn, nuts and seeds, for starters. I would discuss Imodium and Beano with your doctor, if you haven't already. Beano helps digest other veges, not just beans, and reduces gas. In the early weeks, my son said stool came out with gas, so reducing gas was helpful. I would get disposable absorbent bed pads so that if you leak when you are sleeping, you don't have to wash your bedding. I'd also get pads for underwear,... [ more ]
NanJ Your pouch is very new-- it takes time to heal, as I'm sure you know. Leakage should stop. My 16 yr old son is in a similar situation. UC didn't respond to meds, hospitalized 2 times for UC, got PICC line for TPN, then 3 more hospitalizations for surgeries- colectomy & ileostomy, emergency bowel obstruction and then J pouch. He got his J pouch June 24. He's entering 11th grade but still getting tutored for 10th. We don't know if he'll be ready for a full course load in Sept. His friends... [ more ]
clz81 You are still so early on post takedown so don't be concerned at all with difficulty holding right now. Yes, you do want to try to hold longer periods of time right now (as you can tolerate) instead of going every time you feel an urge. I remember my first month post take down getting the "I have to go right now!" feeling several times a day, but I would push through it and be able to hold for another hour or two. Then that feeling just went away one day. Great news is that there are lots of... [ more ]
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J-Pouch ForumsGeneral Discussion
Any ideas about granulomas?
rachelravenrachelraven
rachelraven I'm waiting on the steroids, since the silver nitrate has made things more raw there. Going to give it a week, and see where I am, I suppose. A wee bit better today. But only a wee bit. [ more ]
shawne h The only experience I have had with granuloma's was the result of a biopsy of my pouch. Due to this as well as other problems including a fistula was told I probably have Crohns am waiting for pouch removal now starting the fourth month. Take 20 mg of pred and Cipro a couple time. Month to stY comfortable until surgery. Hope you make out ok do not stY on the pred to long as I have been on it three years now I have stess fractures in my sacrum I thought it was sciatic-problem after a CT scan... [ more ]
Fosty I don't know much about what's going on there but I'm on Entocort a milder steroid for chronic pouch issues. It is working for me so far with no side effects just odd headaches. It's been about 2 weeks now as antibiotics did not help. Prob not a perm fix but I'm hoping to avoid surgery and be able to stay on them for awhile. Hope you feel better soon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Access/Fistula returning?
Uc-DanielleUc-Danielle
Uc-Danielle I called my surgeon and they wanted to first put me on an antibiotic but they said no bc afraid of a blow out so its eua #14 for me ithink with probably another mushroom drain I go in the 31 I think. I hate this. It's been 4 months but at least j caught it early [ more ]
cxa Agreed. I had an abscess that began returning after 8 months, unfortunately. GP prescribed Cefspan and Flagyl 10-day course and it hammered it back down into nothing. I guess at some point it may come back again. Going to see GI about whether there are any options other than just deploying antibiotics whenever it returns. [ more ]
rachelraven I'd say a likely return, unfortunately. Best to make an appt with your GI or surgeon to try to get on top of things quickly. [ more ]
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J-Pouch ForumsGeneral Discussion
Slippery Elm Bark
V van
TinCan The only time I had success with slippery elm was when I used in in the form of an enema back in the days when I still had a colon. After a colonoscopy I developed a flare (as usual). I had to take a weekend trip the next day and was looking for some quick relief. I had heard about using slippery elm as part of an enema preparation so gave it a try when I arrived at my hotel. It was a little wet and wild but I felt immediately better and had no problems the rest of that weekend. I have not... [ more ]
n/a Yes, you can add the spice to your foods and/or take capsules. I'm currently using "Doctor's Best" curcumin c3 complex. (500 mg.). I believe I ordered them from Vitacost or Amazon. [ more ]
van Thank you all for the feedback. I"m undecided if I will try it as I'm not keen on taking something that probably won't work....tried afew things in the past which was just a waste of money. Afew of you guys mentioned Turmeric? How is that taken. All I know about it is it comes in a powder form and you add it to food. [ more ]
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J-Pouch ForumsGeneral Discussion
low citric acid causing kidney stones
R rgv512
TinCan I don't know if I have any words of wisdom, but my urologist recommended that I drink water mixed with a half lemon every day and drink plenty of water. I must admit that I don't drink lemon juice every day, but I do so regularly - especially when I feel a stone may be developing. So far so good. [ more ]
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J-Pouch ForumsGeneral Discussion
Body Pains
P phonix2g
skn69 I am amazed at how much pain people are in post op. I have had quite a few major abdominal surgeries, a 3 step k pouch with total proctocolectomy and my bottom sewn up, over a dozen more k pouch surgeries plus a ton of other stuff...and I have never been on heavy pain meds past 10 days. I took the usual tylenol 2 or 3 for a few extra days if and when needed but nothing like oxy etc. I do take stronger stuff for my chronic sacroilitis on rare occasions (I usually prefer naproxine or other... [ more ]
Scrubjaymama I doubt I will get lucky here but I so need help. I had my colon removed 20 years ago. This October will be the 20th anniversary of my J Pouch. Unfortunately I have had a number of emergency surgeries due to complications. I realize most of them were probably unnecessary, now. However while at Hoag hospital in Newport Beach for one of those surgeries, my doctors thought it was a good idea to staple my J Pouch to my uterine wall. I had an endometrian biopsy last week and ever since the pain... [ more ]
vanessavy I was on a patch too and 80mil of Oxy for about 4 months post op. I had extremely bad pain from my proctocolectomy and BCIR surgery. [ more ]
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J-Pouch ForumsPouchitis
Fecal Calprotectin Test - Anyone?
M mom2panda
mom2panda Thanks very much. My GI described it as you both have. I'll be very interested to see my results! [ more ]
boy's mom my son gets this test done to check on inflammation. He has a J pouch and has had low levels (as low as 15). He has continued IBD ( unclear if Crohns or more UC as too much rectum was left) so he is on humira. The dr believes the higher numbers can reflect some disease activity. [ more ]
Madi78 Following this post as my GI just suggested this after this latest round of 1000 mg of Cipro and 1000 mg of Augmentin daily has had very limited results. [ more ]
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J-Pouch ForumsGeneral Discussion
Confused!!
PB Pattie Britten
Megan O Am I missing something here? You are suffering from incontinence, diarrhea, and urgency and the doctor tells you to cut down on bowel slowers and water? I too am confused. At almost a year from take down and still suffering from these things and the doctor instructs you not to let the pouch dictate your life?? Wow [ more ]
Scott F Keep in mind that excessive gas is sometimes a sign of SIBO. When I had that a couple of months of doxycycline took care of it. [ more ]
Pattie Britten Thanks everyone for your replies. I will definitely start the food diary. I avoid gas producing foods in my diet but I do have some dairy so I will surely look at that. I know I do not have pouchitis as the surgeon has just done an examination of the pouch and it all looks good and I'm not having that horrible pain, just pain from gas. Thanks again. I will think about all you've said. Kindest regards. Pattie [ more ]
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J-Pouch ForumsHelp! Need advice now!
Seriously thinking reversal of j-pouch
H Halo52208
Scott F Halo, I'm on 500 mg Cipro and 250 mg Flagyl, both taken once a day. I started out at higher doses and gradually lowered them until symptoms reappeared - that was the sign that I'd lowered the dose too much. [ more ]
Isbella Originally Posted by Isbella: Hi i do not understand how your pouch look like a cauliflower inside! i am scared. i had a reversal July of 2014 so far i had bowel movement problems, bleeding because i try to push when i use the bathroom. i still have trips to the bathroom and uses canasa whenever my rectum bleeds and very sore. I dont know what to eat still because whatever i eat either causes diarrhea or constipation.i bam seeing my surgeon next month after a year..Can you please reply to me... [ more ]
Isbella Originally Posted by Merle Girl: I live in Council Bluffs, Iowa. I have a great gastro Doctor in Omaha, Dr. Brian Ward. I know it may be a little bit of a drive, but he is wonderful! I also have a j pouch (for about 24 years, I am 44). I have struggled with pouchitis and many other problems along the way. I have pouch scopes done once every 1-2 years. A year ago I was diagnosed with crohn's and after trying different meds, I now will be starting on a biologic (Humira) in the next few weeks. [ more ]
See all 27 replies...
J-Pouch ForumsGeneral Discussion
When can I work after surgery?
B Banks2015
Jaypea After my j-pouch surgery I was ready to go back to work after 12 weeks of recovery. I am a critical care RN and push stretchers every day so my surgeon made me wait an additional 4 weeks rather than sending me back at the usual 8 week post op period. I did spend 2 weeks in the hospital post-op as I developed an ileus and needed a PICC line and TPN but once that was over I recovered quickly and was itching to get back in the saddle. I am a year and a half after j-pouch and living life to the... [ more ]
Elisa W I had my takedown on July 1 and plan to go back to work August 24. I had a post-op ileus, had a painful blockage that I went to the ER for, and have some moderate cuffitis. But I think I'll be okay to go back in August. [ more ]
lablover My husband went back to work after about a month after the first operation. I think he did half days for a few weeks..then full time. [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
Gas and Pouchitis
AllyKatAllyKat
Halo52208 Allycat sorry that your pouch gave out. At least you got 15 years out of it. Im just going on 1 year. Im still fighting the fight. But I agree and dont see them lasting for life. Im happy for the ones that are making it. [ more ]
AllyKat Halo,like had emergengy surgery 3 weeks ago and now have a loop ileostomy. My pouch just gave out . 15 years, I knew it was coming. The meds all stopped working. I think as time goes on we will see a lot more reversals Unfortunately. This was never discussed 15 years ago, it was to be for life. It was a tease. Try and save your pouch. Going back to a ostomy is not easy and I'm not sure but in order to have a end Ileo you need pouch removal? Scary Scary surgery in my mind. The recovery just... [ more ]
Halo52208 Allycat, i feel ya. I to have not found relief having the pouch. I have had pouchitis from day one. you know when you get gas down there. I call it the bowling ball in the butt feeling. If I'm laying down its easier to pass the gas. But it never wants to come out standing up or fear if it does stool might come out. I am considering going to an end illiostomy. I don't understand how others have no problems and we do. I read that 10% pouches fail. I personally think that number is higher. I'll... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Ostomy barrier wipes for butt burn?
GN Gentle Now
Gentle Now Hello! Sorry, I was the original poster and I said I would follow up, then forgot to do so. Anyway! I ended up thinking that the wipes were fine. For me, they are preferable to having a creamy ointment there. Though the ointments do work great, as a new poucher at the time, I most craved just a pain free, DRY, bottom. You know, one of those things that people have no idea to be grateful about. :-) So I switched to Caldesene (zinc plus talc) powder. It feels dry and comfy, especially in the... [ more ]
Shainy http://clinell.com/continence-care-wipes these are brilliant wipes. im not sure if they are sold in the US. [ more ]
Semi Colon I'm surprised no one uses the regimen I have used for over ten years to control butt burn. I use Convetec Aloe Vesta foam on toilet paper. Works like a charm. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
New member intro
H Hupshi
Elisa W Sounds like a good plan. It's always good to prepare yourself and get the information about surgery before it becomes really urgent. Hope you can get the flare under control! [ more ]
Hupshi Thanks for the replies everyone. At this point, I'm still waiting to see my GI to take the next step up in medicines (remicade or humira) and I have an appointment set up at the CC in October. I plan on going on the biologics and seeing if it gets me out of this flare and off steroids. Even if it does, I'm keeping the CC appointment and the option of surgery on the table. Unfortunately, I don't have a lot of faith in the biologics keeping me in remission for long term and would prefer to... [ more ]
Elisa W It sounds like you haven't exhausted all of your medical options yet, specifically the biologics. I know they sound scary, but I had no adverse reactions to them. Unfortunately, I had no positive reactions to them either! I was very ill before my surgeries--unable to work, unable to leave the house without having accidents. I'm only a month out from my takedown surgery, and I'm still waiting for things to calm down, but I'm already feeling healthier than I have in a year. But you might give... [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
DIARRHEA/ANTIBIOTICS STOPPED WORKING
MIKEEYMIKEEY
MIKEEY Thanks so much Fosty, will definitely look into it,not sure if I took it before, must ask my doctor, I have been on so many medications. [ more ]
Fosty Antibiotics didn't work for me so now on Entocort. I'm 1 wk in so far and no side effects. It is a milder steroid. Hopefully it will work!! [ more ]
MIKEEY Thanks for your response Pouchomarx, yes my doctor has checked me for this. Thanks again [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Alcohol?
U UCBloke
LoraCH For me drinking alcohol doesn't work at all. I am 10 years post take down. I get killer tummy aches with any amount of alcohol consumption. Anyone else experience problems with drinking alcohol? [ more ]
UCBloke Thanks for taking the time to reply Jan, you are obviously busy with the amount of replies to posts!. I am loving your work (Being a newbie JPouch user). I did try the glass, (Even managed two) of wine at the weekend, without bother. I will however stick to 1 or 2 max while away in the sun for obvious reasons. I dont know how long i will be on the Flagyl.. all i know is that its working a treat a the minute, giving me freedom! Thanks again.. Marty [ more ]
Jan Dollar Yes, metronidazole is the same as Flagyl. I have found no alcohol intolerance for me while taking metronidazole. If you experiment, do it at home and with a small amount at first. If you react, you will get nausea, vomiting, and flushing. Not necessarily in that order and it may be only some of the symptoms. It is not a widely documented reaction, but a presumed reaction due to the chemical similarity to the drug disulfram (Antabuse), which is the drug they give to alcoholics as aversion... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Advice for final J pouch surgery after care
N nc
nc Toddi1973 - Sorry to hear you had to go through that, and hoping all is good now! Thanks for the advice. Ilex seems to be the go to cream! Had to do the final takedown twice after the first j-pouch had to be redone two years into it. Long story but none I'd like to go through a third time. the one thing that saved my ass (literally) has been and still is ILEX paste. Its like latex on the skin around the "exit" . For me that is the only way to fight the butt burn. calmoseptine works for a... [ more ]
nc Thanks Shainy! [ more ]
Shainy like others have said, you need a cream. I tried a few and settled with calmospetine although I think the ilex may have given me better protection in the first few weeks. I don't have a bidet at home so I bought a small handheld portable bidet which helped a lot. also the clinell wipes are the best wipes out there. I still use them now [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
which antibiotics are safer to to take after c diff ??
PouchomarxPouchomarx
Jan Dollar Any amount of time you take them is helpful, but more is better. Since S. boulardii is a yeast, it is not affected by the antibiotics. So, it is definitely good to take with them. Jan [ more ]
Pouchomarx i just want to take them during the antibiotic time frame due to past c diff issue. So maybe a week prior and keep taking for a few weeks after the course of Amoxicilin is over? or is taking them only a week prior pointless? [ more ]
Jan Dollar Gee, probiotics take time to colonize, so you need to take them for at least a month. Otherwise, not much point in it. Probiotics are more of a long term maintenance thing, and you would definitely need to take them much longer than the antibiotic. Jan [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Pouchoscopy
MIAcolonMIAcolon
Jan Dollar I echo Rachel's thoughts. In addition, if you are concerned about the prep, call the office back and get clarification. Be sure to have the nurse ASK the doctor to review the prep specifically for you, explaining that you have NO colon. When the doctor schedules these things, often he does not specify that you are different, so the staff hands out the standard prep instructions. So, don't let them insist that "this is what WE do and YOU must do it." Whether or not you still have some rectal... [ more ]
rachelraven Hi there. So, yeah, scopes should be part of your aftercare. However, I had mine constructed at age 19 in 1991, and I didn't get scoped for YEARS. I never had any problems for the longest time, so I just didn't bother. I was scoped around maybe 2005 or so, after a bout of likely pouchitis, and all was good. Then not again til maybe 2010. The past 3 years, I've been scoped a number of times because of strictures and fistula issues (new issues, sad face). My surgeon's prep was always nothing... [ more ]
Jeffsmom Gina, what a story! You really have been through the ringer. Pouchoscopy is a necessary evil. My son just had one 2 weeks ago at Weill Cornell. There is no prep! You don't have a large bowel. So there is nothing to prep for. The only thing Jeff had to do was not eat 8 hours before. That was it. His GI did the scope. Before that, the surgeon had done them. But he is new to all this as well. The secretary or nurse just gave you the general instructions. I would call them and double check, but... [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Night Time Incontience Post-Delivery
MH Mrs. H.
LoveLife So good to hear that you are doing better ☺. And thank you for sharing your advice on kefir�� I just wanted to comment on Allbran that you were eating. Don't the contain a lot of sugar? When I have 'running' issues I eat HUSK. Perhaps it is called something else in English. It is shells of psyllium seeds. Very effective and 100 % natural without sugar or anything else. I always carry them in my purse. [ more ]
ChristineinDenver I had horrible incontinence after my pouch surgery, and not pouchitis. My sphincter nerves were damaged - either from my four pregnancies of the surgery (not sure). I had a nerve stimulator put in my lower back and I am able to leave the house, work, exercise. It's allowed me a life. [ more ]
Mrs. H. Hi Joza, I must say that although I once in awhile still have night time incontinence, I have found something that has made me feel immensely better! I discovered that night time incontinence came on when I had a very mild form of pouchitis...no bleeding, just urgency with little output (except at night...hence the problem). I found that deep fried foods, pure chocolate, apples and popcorn were terrible for me, so unless I have them early in the day, I avoid them. I also started taking Kefir... [ more ]
See all 12 replies...
J-Pouch ForumsWomen's Health & Pregnancy
7 wks pregnant with pain at pouch site
BZ Bronwyn Zozula
LoveLife I am in week 17+ and have experienced pain due to gas. Yesterday my pouch closed of and I had full stop. Luckily it helped when laying down, but when the flow started again I had to run to the bathroom all night. Now its morning here and I am sore all over. Trying to drink lots of water and eat some oatmeal before I go to work. But fear not this is my first time with this problem during my pregnancy ☺ [ more ]
lholdem Hi Bronwyn, I am about 8 weeks along and already experiencing increased output and gas due to the pregnancy (yay). Gas can cause intermittent pain for me, but I would find a GI as soon as possible to get checked for pouchitis - if that's the cause of pain you don't want that hanging out with all the other discomforts of pregnancy! [ more ]
Bronwyn Zozula Thanks for your help Rachelraven, I have also noticed an increase in my output. Although 7 wks seems a bit early... fingers crossed I make it to 12 wks! [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Medicine & conception
D dhan88
dhan88 @jeffsmom - tell your son not to give up hope. My fiancé went through what he's feeling, but he will meet a girl who is understanding. The best thing he can do is be fully honest about everything (for instance, my fiancé sometimes has "leakage" at night...obviously something he was nervous/embarrassed to tell me when we moved in together...but I don't care!) it helps when you can joke about it too. But honesty is best. I always tell Matt "if you don't feel well, just tell me" because it... [ more ]
Jeffsmom I suffered from infertility but for far different reasons. My suggestion would be, have him tested now, or soon. It's simple and inexpensive. My our GYN can do it. This way you might have an idea of what you might be dealing with. You are a wonderful person to love him. My son, who is the one who had UC and is so afraid to even think of talking to a girl, let alone date. He is 24 almost 25. I hope he will find someone like you to love and care for him! [ more ]
thumprhare Prednisone is actually given to men that have sperm antibodies, so I would not be as concerned about that. He probably should make sure to take Folate supplement. The good news -- the key is him having good swimmers then you handle the 'building' portion of pregnancy. If you were on that list of medications it would be a far different story. [ more ]
See all 3 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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