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J-Pouch ForumsGeneral Discussion
Pouch excision
L LisaT
liz11 Definitely don't think it can be done laproscopically. It is a big big big surgery. Just had it done in march. You would want to find the best surgeon you could possibly find who has done this surgery many many times before. And you would want it done in a very good hospital.. where expertise from adjunct areas - like urology, infectious disease, gynecology, was high.. just in case of complications [ more ]
chiromancer Haven't had it done yet but will likely within the next 6 to 9 months. Currently disconnected with end ileo. I asked surgeon about doing it laparoscopically and he said he can try, no guarantee. I think a main issue that makes it complex is the blood supply to the pouch needs to be rerouted, also the number of adhesions is a factor, fewer adhesions the simpler and quicker it goes. [ more ]
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J-Pouch ForumsGeneral Discussion
Possibly a fistula?
Uc-DanielleUc-Danielle
liz11 I don't have a fistula but rather a chronic sinus tract in the area where the jpouch was removed. I have had multipe abscesses drained through EUAs. And most recently a drain was put into this sinus tract in my last EUA. All with Dr. Remzi. The EUA will be a short surgery and you will go home the same day. Dr. Remzi will take good care of you. Just make sure you go home with a pain med prescription. good luck. [ more ]
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J-Pouch ForumsPouchitis
Extreme Gas Pain??
P peewee80
peewee80 Thanks Rocket! I will look. [ more ]
Rocket peewee80, So you don't have to go so far, your supermarket might have it. Or you can probably check Amazon. The one I use is "Nature's Way Activated Charcoal." Its a white and yellow bottle with a yellow cap. Rocket [ more ]
peewee80 Thanks so much Rocket! I talked with the GI doctor this afternoon. They put me on Flagyl and Cipro. I am feeling some better gas is not as bad. They suggested I use Mylacon tablets. I think that was the name. I will try the charcoal. I am about 2 hours from a health food store but I will be going before to long. Again thanks so much for the info and your time. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need avdice! - Help!
S Solomin
kk So sorry to you have had more problems. When I had my last surgery no one told me how to come off the pain pills so when I took myself off them without tappering I remember feeling like what you described. I have also done that with a depression med. From now on I have learned to ask before quitting meds. Hope to hear you are much better soon. [ more ]
fq u should be better in no time! sounds like bad reactions and withdrawal. rest, rehydrate, eat protein, take walks, stick with doc's advice, fresh air! [ more ]
Solomin Well I discovered that cesamet ( non narcotic marijuanna med) and high energy caffeeine drinks don't mix too well! Too bad the ambulance didn't turn on lights and siren when they transported me to hospital! [ more ]
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J-Pouch ForumsGeneral Discussion
China - Precautions?
J Jpouch8888
CeeeeCeeee I went to China this past summer...July and August. My J-pouch behaved beautifully. Guess it liked the food and the horrificly hot weather and equally high humidity. I attribute the health of my pouch to the one or two local beers I had every evening. Well, not really, but you never know! The beers were wonderful! I was not bothered by gas and ate everything placed in front of me. I always carry Flagyl and Immodium but didn't need either. BTW.....Shanghai is wonderful! A boat ride on the... [ more ]
jeane I traveled recently with my jpouch and my recommendation is to always travel with antibiotics if you have any problems in general with your pouch or pouchitis. My pouchitis flared up after the 6 hour plane ride as my GI indicated it might do. It did settle down after a couple of days. I would just rather be on the safe side. If you do get a stomach bug for any reason you will have your meds on hand which will make things much easier for you in the long run. [ more ]
sudie I always travel with antibiotics then if problems arise you don't have to start explaining your health difficulties with a doctor you do not know,I always worry about a pouchitus flare so am prepared, my doctor even advises this procedure . [ more ]
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J-Pouch ForumsGeneral Discussion
Take down site
Uc-DanielleUc-Danielle
TE Marie I hope it's all good news Tuesday and that whatever he does works! [ more ]
Uc-Danielle no I dont have anything for pain. They are very hesitant on giving me anything for pain. I think it is because of my age. But I found out today I go in on Tuesday for Dr Remzi to exam what they think is a fistula. If they can he will put some kind of tube in there thats how i understood it. I did get to see one of my favorite fellow drs and he made me feel better telling me he will also be there. I have all the faith in the world with dr remzi and I know he will make it better for me. It is... [ more ]
TE Marie I hope you are in pain you have medication to help. I'm sure they will figure out your problem and have some answers at CC. Take care [ more ]
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J-Pouch ForumsGeneral Discussion
Camping/hillwalking
CdubCdub
Laurie49 We do both...although, our hikes are not like Sue's (HOLY HIKING GIRL!!). My pouch certainly doesn't stop me. I too take imodium, eat carbs (they do better in terms of transite time for me) and stay hydrated. I also go when I need to -- there is always a friendly bush to hide behind. [ more ]
suebear I do lots of thru hiking/camping in the California Sierras. My hikes are 6-11 days and anywhere from 60-145 miles. I take Vitalyte for staying hydrated, and take imodium to slow things down since all that exercise tends to increase motility. I also eat foods that have a longer transit time instead of my usual diet. I haven't had anything but positive experiences. Go prepared and enjoy! Sue [ more ]
Goodspeede Camping and hill walking should be fine. I was a hiking guide for a few years, and that was after my surgeries even. And I also did a fundraiser by hiking the Northville-Placid trail (in NY state) to raise money for the CCFA. At one point I was over 30 miles away from a toilet! Here are a few tips you may want to take into consideration: 1) Hydration! Drink, drink, drink. The last thing you want is to get dehydrated. If you can by a backpack like a Camelbak, then that would be helpful. 2)... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
C-section question
D Daisy18
JulySheWillFly I've heard pros and cons for both options from my docs. Does anyone know if having (or not having) a rectum makes a difference? [ more ]
hart155 I've had 2 c-sections. One high risk OB and one regular. One had my colorectal surgeon on call but there was no need. I was not concerned the second time around. [ more ]
Former Member I had my c section emergency at 28 weeks with my twins last year and had them at an Army base so no colorectal surgeon was available. They did say it was one of the most difficult c sections they ever did because of extensive scar tissue, but the uterus is above the pouch and was no problem there at all. Good luck! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Looking very pregnant very eary - is this common?
J JulySheWillFly
JulySheWillFly Now I definitely look pregnant, at 5 and a half months! Having a singleton, but I think the issue is poor abdominal muscle tone. Also, I am inexplicably not gaining any weight so I think any belly growth looks extra pronounced. [ more ]
Former Member Are you having a singleton? I realize this is october now and i just saw your post. I had IVF but it was twins and i was in maternity jeans at 7 weeks and everyone thought i was 3-4 mos along. Congrats! [ more ]
Comber I think it just depends on your build, where the baby sits, etc. I am a more petite person. Short and thinner so I was suprised to be wearing maternity jeans about 14 weeks and now at 16 I am "showing" to where people are already rubbing my belly! My doctor says in shorter smaller woman it is harder to hide [ more ]
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J-Pouch ForumsPouchitis
Pouchitis and Uveitis?
K KReid
lhh65 Thank you, NancyAnn. After your words of advice and some other things I read, I did go see my optometrist (she is close and I trust her) yesterday. Turns out that while the symptoms are very much like uveitis, I actually have corneal erosion, a complication of a corneal abrasion I got 9 years ago! So I'm being treated for that. The interesting thing is that the dehydration I'm fighting constantly was likely a factor in this eye problem starting a couple weeks ago. I still have to figure out... [ more ]
n/a Laurie, sounds like iritis/uveitis to me. You need to get to an opthalmologist pronto, as there can be serious complications if it is left untreated. Good luck! [ more ]
lhh65 Interesting because I was going to post about problem I've been having, worried it could be uveitis, and then I saw this post. Here's what's been happening with me: One morning a couple weeks ago, I woke up with terrible pain in my right eye; it was so sensitive to light that I could hardly keep it open. I had problems focusing, blinking was painful, so I would let my eyes water. It resolved itself in a day. Now, last night it started again, and I've had the problem all day today. I was home... [ more ]
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J-Pouch ForumsGeneral Discussion
gas & loud bowel movements
FM Former Member
Former Member It doesn't bother me, because for one, I most likely will never see that person again. Secondly, the great feeling of just letting it rip is outweighs any feeling of embarassment I might have. [ more ]
Cdub Oh we ALL become experts at this, Warren! Running taps helps disguise noise, as does hand-driers in public toilets (where they are in reach). For smells - just a really good air freshener! Friends and family are going to understand, and in a public place people aren't going to be too bothered. Have you ever sat on the toilet in a large public bathroom and heard all the other noises (and smells) people with supposedly "healthy" colons make?! Of course it's a bit embarrassing, and it does make... [ more ]
Former Member Thanks for the replies everyone I love how helpful everyone is on this site. If anyone has anymore suggestions, please keep 'em coming! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Hydrosapalinx and Essure
M meghspd
meghspd Thats very encouraging beth156 and Ingrid . Many Congratulations to you Ingrid ...happy parenting its good to know that essure has worked for you guys. did you guys have any side effects ? Are you periods normal or more painful after the procedure ? do you have backaches..? can you feel the coils inside ? Also during pregnancy can the coils hanging in the uterus hurt the baby ? if the area where the coils are located get pressed or pushed does it hurt and can tht cause the coil to move or... [ more ]
Former Member My doctor would not do IVF until i had the essure procedure done because of the same reasons you said, toxic fluid leaking down and preventing implantation of the embryo. I had it done in the office under light sedation, took all of 10 min. I had bilateral hydrosalpinx. I went ahead with my IVF and had successful pregnancy on the 3rd try. Had twins 8/1/11 I also had a MRI recently and they said the Essure were no problem for that, which it wasnt. Good luck to you!!!!! [ more ]
beth156 I had the essure placement about a month ago and so far so good. My MD also was VERY hesitant to do yet another surgery to remove my tubes, so he strongly encouraged this as the best option if I wanted to move forward with IVF. I will go back in December to see if the tubes are fully blocked, then move forward with IVF! I'm waiting until March or April for IVF as I'm a candidate for a New York State grant to help with the costs (health insurance covers $0!!!) and March is when I find out if... [ more ]
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J-Pouch ForumsGeneral Discussion
Stoma versus jpouch output smell
A ActiveUC'er
mgmt10 I didn't have an end only a loop. I can tell you my loop ileo output was WAY smellier than my j pouch output times a million! [ more ]
ActiveUC'er Thanks! I didn't think there was a way to sugar coat the question or the answer! The thing I've found most disturbing out of everything is that my ileo output DOES smell like some of the foods I've eaten (fish, eggs, gravy) mixed with..well..poop. Thus far it's actually affected my food choices. So I'm glad it gets less smelly! [ more ]
Spooky No way to sugar coat this response so I'll cut right through to the TMI: basically, the answer is no. My ileostomy was definitely smellier. With the j-pouch, most of the time there doesn't seem to be much of an odour, and when there is, it tends to smell a lot like what I've eaten. As I'm sure you've already noticed with the ostomy, the odour is definitely influenced by diet, but specific odour producing foods will of course vary from individual to individual. And, if it's any consolation, I... [ more ]
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J-Pouch ForumsGeneral Discussion
Anus pain after jpouch surgery
S Shannah
Shane199 ❤️
Shannah Wow. I am new to this site and so thankful. I felt like I was the only one who had these symptoms. The dr never told me how much pain my butt would be in. I expected the abdominal pain but that doesn't even seem to be that great anymore. It is the annul pressure that makes you feel like you have to poop all day long that bothers me the most. I had no idea it would last so long. I am grateful to hear other people who have experienced the same thing I was afraid my jpouch was failing and my... [ more ]
CeeeeCeeee Don't be afraid to take pain meds. You're feeling pretty wiped out anyway so might as well feel that way while painless! You'll know when to slow down or stop the pain meds. Your body will tell you! [ more ]
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J-Pouch ForumsGeneral Discussion
nobody answered, so take a look
I itsnotsherry
itsnotsherry Vanessavy..what did you mean the bag was not an option for you? Why? [ more ]
kathy smith I whole-heartedly agree with Breezie. I didn't think the response was snarky. I think it was an honest mistake regarding which site popped up. Unfortunately, because we can't see the person or hear the person posting, it's easy to assume the worst in some cases. Perhaps what we should do when we see a post that seems to be negative or snarky is to reread it in a totally positive light and see if the meaning changes. kathy [ more ]
Breezie JeffDC, I applaud you for your post. I felt it was an unnecessary personal criticism on Sharon. For the record, I didn't interpret Sharon's post as snarky at all. I feel that what was said to Sharon is outside of our normal community standards. We all have the option to put other members on ignore if we find them tiresome. [ more ]
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J-Pouch ForumsHelp! Need advice now!
hemroid
K kk
kk You would think. My husband also heard him say that and he always thought he was wrong just b/c of what you explained. He looked inside but never said anything about prolapse except he wanted me to have defogram to see extent of prolapse before opening me up. Never discussed the results with me. His assistant had to meet with me morning of surgery. Of course I didn't know there was a possiblity I did not need surgery. Not to say that if I had not done surgery that I would of ended up having... [ more ]
Jan Dollar I would think they could tell the difference between a prolapsed hamorrhoid and a prolapsed pouch on exam. Unless our surgeon removed all those internal and external veins, how could they say it was not possible? Jan [ more ]
kk I was told by last surgeon I saw that it is not possible for me to have one. He did surgery for J-pouch prolapse and bowel obstruction but 2mnth. after actual obstruction. Told by a couple of other doctors is possible. Finally decided either I can or can not so called surgeon that did my surgery (creating pouch) and was told it is possible so at least I know that much. At times having the same problem so is it prolapse or hemroid? Other than discovering part of bowels were attached to female... [ more ]
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J-Pouch ForumsGeneral Discussion
Upcoming surgery
J Jenmystique
CeeeeCeeee I, too, would rather "know it all" than to be surprised after the fact. I guess we all feel different about that and some surgeons presume what we don't know won't hurt us! Hmmmmmm! [ more ]
skn69 Jemmy, I have a k pouch and not a j pouch (which is what they are giving you)...yours uses the natural biological exit (the anus), mine does not...in the k pouch they have to build a one-way continent valve out of your own intestines to prevent things from pouring out...and that valve can be delicate if not well treated or for a number of other reasons...my pouch (the original one that is 33yrs old) is doing just fine (knock wood!)...it is the valve that has had its share of problems and... [ more ]
Jenmystique Thank You! Did you have a lot of complications or something? I'm trying to figure out why they had to go back in with you and if this is something I'm that happens often (something I would likely have to face?). Jen [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch friends-I need your help!
L LisaT
tammykathleen On the cancer note, they have done further studies to show that the earlier stats from the study done in 2006 were very inflated. The chance of getting the specific type of cancer from Remicade and Humira is barely an uptick from the chance the average non-user of biologicals face. I do not think we are allowed to post hyperlinks, but the newer study can be found on the CCFA site. Below I am posting a summary based on the results: "So we do have to put things in perspective here. The risk of... [ more ]
Onwisconsin My experience with the drug was that it took a prolonged time to start making a difference. Wit Remicaid I remember there is an initial dos so I visited the hospital more frequently, then after the first few visited every 2 months. i noticed about three months in it made a real difference for my UC. This lasted about 8- 12 months after that and then I started to deteriorate again. Both Remicaid and Humera seemed to work for several to many months, and then they were no longer effective. The... [ more ]
ActiveUC'er Just a quick note..Humira was JUST approved by the FDA to be a UC treatment. I had Remicade for UC - 1st dose was great (basically cleared my symptoms), 2nd dose was ok, 3rd dose did nothing. 4th dose was a maximum dose and just basically got me through to surgery. I've heard that Remicade and Humira are both more successful for Crohn's than for UC. However, Remicade seems to work better for UC than Humira. Best wishes! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
OH NOW WHAT!?
JenniferGJenniferG
tammykathleen Hi Kelsey and Jennifer, The IUD causes more ovarian cysts to occur? Good Lord, I was told the OPPOSITE!! I do not definitely have PCOS, but have trouble with forming cysts on my ovaries. I am so glad I saw this post. I just spent over an hour in the MRI machine yesterday to gauge whether it is time to go in to remove more cysts or whether I can wait it out for a while. I had surgery in 2010 to remove a bunch and I was told to have the IUD, which I did, because it would lower the amount of... [ more ]
KelseyHey2308 Seeing different doctors will get you different opinions. Find one that listens to you and that has given you successful treatment options, present or past. Don't give up! It takes awhile... like everything else! [ more ]
JenniferG thanks for the advice. sometimes Im not sure what to do anymore and every doc I see seems to have a different opinion. [ more ]
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J-Pouch ForumsGeneral Discussion
Need Jpouch doctor in Sarasota or Port Charlotte FL
FM Former Member
Jenmystique Dr Jo Butler. Sorry. forgot to give you his full name... [ more ]
Jenmystique I have a step-uncle in Port Charlotte. Forgive me for not remembering the correct names but he does the surgery that gives us a stoma. He told me he doesn't know who to go to in order to get a JPouch and the doctor he used to send people to in Tampa retired. His name is Butler if maybe he can help you find someone to maintain your JPouch. I'm sorry I don't have better info for you. [ more ]
Michael Hubbard Not sure if you are still in need but if you are willing to come up to Tampa there is a very experience Surgeon that did my j-pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Abscess?
A akteacher
akteacher Thanks Sharon! Going to the dr. this morning for her to check it. Hopefully, all is well! [ more ]
skn69 It is probably good news and not bad...as long as it keeps draining out and not closing up and forming another abscess then you are in fact healing...sometimes it just takes longer for the zone to empty out and heal...keep it clean and lightly covered with a piece of sterile gauze. Sharon [ more ]
akteacher So, it's been a week & it's still draining & hasn't closed. That can't be a good sign, right? Does this mean the fistula is back to the abdomen, too? Can it just be taking this long to drain/close? Any ideas? I'm heading to Clevelandd next week-end. Have to say I'll be glad to know one way or the other about surgery/ treatment! [ more ]
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J-Pouch ForumsGeneral Discussion
18 year old daughter has had some bloody/mucous
K kereen
Spooky I'm so sorry your daughter is going through this. However, I think you know that the answer is not just "wait and see." Given the family history and her symptoms, UC seems a likely possibility. Also, since her symptoms seem largely mild at this point, the sooner she can start treatment for it while it's still early, likely the better off she will be. Granted, I had an acute flare, but with my UC, I went downhill FAST. I went from having a few drops of blood to 20+ bloody bowel movements a... [ more ]
skn69 Kereen, I am so sorry that your daughter is going through this and I am happy that she had the courage to speak to you about it so soon...many kids go years without telling their parents that something is up...if she had the courage to speak to you it means that she realises that something 'not normal' is brewing in their and that she needs more than just an OTC aide to get her past it...take her in, get her checked out...if it is, in fact, nothing...then you will both be relieved...if it is... [ more ]
jeane Kereen, First I would like to say I am very sorry about your daughter's recent health issues. I can relate to you as I have two children and both my dad and I had ulcerative colitis (he had an ostomy at 47, I had jpouch surgery at 49), so there can be a genetic link. When I was about 22 and started having the exact same symptoms your daughter is experiencing (minus the vomiting), my dad immediately had me see his GI doctor. I had a sidmoidoscopy right in the office (no colonoscopy). Very... [ more ]
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J-Pouch ForumsGeneral Discussion
Cold and Flu with J-Pouch
NewPouchMikeNewPouchMike
Epic Scotsman One thing I have to point out, there is no such thing as a non-viral flu. You could certainly have flu-like symptoms caused by a bacterial infection, but any actual flu is some strain of influenza virus. [ more ]
NewPouchMike fq, I got this cold/flu another time previously and as you noted it did throw my output into an irregular mode as well. It seemed to me then (and now) that it might be the OTC drugs, cough medicines etc... that mess things up...??..... [ more ]
NewPouchMike thanks for comments all..... I'm operating presently on assumption that as epic suggested I just got two separate strains over short period of time or I never got the first one totally out of my system and then got it all over again. I'm still planning on getting a flu shot this year but I guess I will need to wait a bit longer until I'm sure I'm totally over this current cold/flu...... So it doesn't sound like there is anything extraordinary going on for us as J-Pouchers..??.... I was... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Not sure what this could be???
fourgrubbsfourgrubbs
fourgrubbs Thanks for your reply! I don't have a lot of output but frequency and then hardly anything comes out. I do have a lot of gas right now....I can't even imagine what could be blocked in there. I am still having some pain but it's better. I didn't mention this in the last post but I was diagnosed with having ulcers in my pouch at the last two scopes. It almost feels like that...like the ulcers are just worse in there. I see this doctor tomorrow and we'll see. My next step is a larger hospital... [ more ]
ElmerFudd So blockage is a possibility - your outward symptoms make it sound more like that, or gas. You didn't say anything about your outpout or lack of it. That is important when assessing blockages - or partial blockages. Usually you will have the following with a partial blockage: - Abdominal pain at the site of the blockage - Output, but less than usual - Possibly diarrhea or loose stool - More burping than usual With a complete blockage - take those symptoms and amplify them (abdominal pain -... [ more ]
fourgrubbs Thanks for your reply. I was thinking of calling the old doctor in Philadelphia. They know my history the best anyway. My appointment is actually Wednesday and I am hoping to hold out until then. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Intimate question
FM Former Member
clz81 Katie, I had the exact same problem except I wouldn't use the word "pain", but it was extreme discomfort that could lead to pain. It was that way for about 2 years for me and then my baby boy was born. Problem solved! Leads me to believe there was some scar tissue or adhesion that broke when he was born (as Sharon suggested). Things are all good now. We had a baby prior my my j-pouch too so I had something to compare against. For you, this is all new so it probably hard to know what is... [ more ]
skn69 Hi Katie, So, it does not sound like 'normal' new sex, discomfort nor like typical jpouch tightness...it could be adhesions/scaring or that something is brewing between the 2 like an abscess...she might want to give you a vaginal ultrasound to see what is going on back there...have you tried the position with you on top? This may be a question of angle or trajectory for now...depening on the way he enters you...you need to find a position where when entering he puts pressure on the front of... [ more ]
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J-Pouch ForumsGeneral Discussion
changes to waistline after surgery?
D Danita
Danita Thanks for the replies! I don't really mind if my belly looks different, just relieved that clothes will still fit. [ more ]
mgmt10 Yeah, I am kind of lopsided now but my clothes fit fine and since I do not wear anything tight on top, you can't tell. I still buy the same size. I have mourned my flat belly and have moved on, lol. [ more ]
skn69 No such luck... Sharon ps...lopsided is not an obligation just an unfortunate side effect on occasion. [ more ]
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J-Pouch ForumsGeneral Discussion
Vitamin D levels too high
sherlocksherlock
TE Marie Most MD's are fine if you vitamin D level is over 30. 30-100 is normal. My nutritionist says being in the 80-90 range is where we should be. I went from being too low.I took some mega doses of 100,000 then I went to 10,000 a day and have been taking 5,000 units a day. My recent level is 60 so I'm going back to 10,000 per day. My nutritionist takes 5,000 a day. I told my doctor what I was taking and she said I didn't need to take that much but she didn't tell me not to take it either. It is... [ more ]
Srf1 Just the opposite for me prior to surgery. Vitamin D levels were seriously low. Had to go on a course of 30,000 IU daily for a couple of weeks. [ more ]
CTBarrister Not sure what could be causing it unless you took a vacation to the equator and were out in the sun all day, every day. Vitamin D could also be in calcium supplements if you are taking one. [ more ]
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J-Pouch ForumsGeneral Discussion
Getting Insurance
M marcustaylor
vanessavy Blue Cross you can get [ more ]
TE Marie I don't know if it's still in place but after President Obama took office he was behind legislation that said terminated employees only had to pay 30% of the insurance cost. I don't know if it was just for a few years or not. I think the employer gets something like a tax credit or whatever to compensate them for paying the 70%. I don't think you are going to find an insurance company that will want you. You should look into having the kind of health insurance that has a large deductible and... [ more ]
ActiveUC'er This doesn't answer your questions, but I thought this might be a good place to put the upcoming insurance changes (document is provided for free by consumer reports on their website). http://www.consumerreports.org..._and_Your_Family.pdf [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anyone experience night leakage WITHOUT pouchitis?
J jeane
Blake D. I've had my J Pouch for 6 weeks and I leak probably 3 or 4 nights a week. It not usually a lot, but enough to put a small wet spot on my underwear and is annoying. I'm guessing it happens when I pass gas when sleeping. I would love if it stopped. [ more ]
Connie My son has had a mostly healthy pouch for 11 years and has always had periodic nighttime leakage sometimes significant. He knows he probably could control it with diet, but at this point is unwilling to sacrifice eating whatever and whenever he wants. [ more ]
Twilight I haven't had pouchitis yet (knock on wood) and I will sometimes have leaks at night depending on what I ate during the day, like steak and excessive sweets. Also, it might seem weird, but I'm more likely to have some leaks if I sleep on either side, so I try to stay on my back all night. [ more ]
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J-Pouch ForumsHelp! Need advice now!
BM problems (perhaps due to over stretched Pouch)
S Solomin
kk Solomin, Sorry to hear you have still not had surgery. Not sure if doctor was correct but I was told that me getting sick to my stomach had to do with scar tissue and understood bowel obstruction that until 1998 corrected itself. I find that not emtpying as often makes this happen. Not sure if it will work for you but I did find that bands you put around your wrist and it is on a certain pressure point helped and also I used motionease that you put behind each year in certain area. I got the... [ more ]
Solomin Hi, I have been examined enough (recently) and have taken many tests (which seem to never end!). I do not have a stricture, nor do I have any ulcers or inflammation. I do not have pouchitis either. It also does not appear that I have a prolapse pouch as it does not appear that I have those type of symptoms. I am scheduled for a pouch redo, but the waiting list (in Toronto, 300 miles away) is currently 2 years. Thanks for the comments. It is much appreciated. Solomin [ more ]
kathy smith There have been others here who've had an overstretched pouch and sometimes what happens is that the pouch prolapses or falls over on itself. There are numerous posts here on prolapse. Do a search on prolapse and see if any of the symptoms sound like what you're going through. If it is a prolapse, the pouch can be tacked to the abdominal wall which may alleviate the problem. A pouch re-do (and maybe reduction of size?) might also help. Have you been checked for a stricture? That can also... [ more ]
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J-Pouch ForumsGeneral Discussion
Hair loss since jpouch surgery or due to chronic antibiotics?
J jeane
fq hi jeane, yes, i lost hair from my first surgery, but was VERY VERY sick going into it, and VERY sick for a while afterwards. when you are sick, or having major surgery, or go through a big shock, your hair cycle reverses. that is to say, normally, 80% of your hair is in growth or "live" phase, whereas 20% is in shedding stage. In sickness/surgery, this process is reversed. So 80% is now shedding. this is almost always just a temporary response to the shock in your system. It is called... [ more ]
RLC It is funny that we are all loosing the hair. I, too, am going through the menopause (bring it on)! I am finding now, that my hair is growing back curlier than ever. So, now I am embracing the curly look. What is next for all of us?! Roberta [ more ]
TE Marie I used dandruff shampoo because of the zinc as Sharon is suggesting. I had hands and drains full of hair. My hair is thick so no one but my husband, hairdresser and I knew. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Loperamide is fantastic.
L Leeloo
Leeloo Yep, buy it in bulk at Costco and enjoy your day! Life is good! [ more ]
fq thanks! i thought i could control it with diet and just by waiting and time, but i realized if i could take a small relatively harmless pill, even temporarily, that will drastically improve my pouch performance - and ultimately my emotional and mental state - it is SOOOOO worth it, and can help you adapt faster! help your body! [ more ]
Leeloo I.E. MANY less trips to the bathroom. [ more ]
See all 3 replies...
J-Pouch ForumsMen's Health
Painful ejaculation
EricEric
ElmerFudd I would say you may just need time for things to heal up. If the pain persists you may need to see a urologist to see if they can provide any insight and help. [ more ]
KDelphi I am female, but, I can tell you that female orgasm is very painful, often caused by dorsal root nerve injury (men have the same nerve root) It runs right over the clitoris in women...not sure about men..sorry I dont know more... [ more ]
Subsky sounds prostate related. the prostate is what makes the white liquidy stuff, and it's located right under the bladder, and considering you had your jpouch removed and butt sealed shut, that area is probably quite inflamed and whatnot. might be something to talk to your doctor about. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
prolapse
FM Former Member
skn69 Yes, pipefitter, Belladonna can make you a bit loopy and cause drowsiness in some people so take the first doses while at home or in a place where you do not need to drive... I am very interested in what the sphincter repair will be all about and what the new method is...please post on it as soon as you hear...there are quite a few people (including a few Aussies here) who would benefit from the surgery... Thanks for posting Sharon [ more ]
vanessavy I haven't heard anything but I have the BCIR so no sphincter here. Just wanted to comment I just spent a week in Cleveland and saw Shen. He tried to kill some nerves where I have had cluster of cysts grow and no other GI ever mentioned that to me. He is pretty awesome! Transferred my care there. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Pouch ulcers :(
N Niro
fourgrubbs I have had them too in several of my scopes. Sometimes, I find that I have pain almost similar to when I had my colon. I don't know what to think of it. You are not alone. [ more ]
Sewdaring I just had a scope of my pouch toady and there were a couple of ulcers in my pouch. The GI said that ulcers are not uncommon and he didn't seem concerned, so I'm taking that as good news. [ more ]
Niro Hello again Has anyone got any experiences to share of finding ulcers in their pouch during a scope? My gastro says that this is common in most pouches but I am really concerned Many thanks in advance for any advice [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
who has a bidet?
C clouseau
grandmaof1 I have a bluebidet.com. It is simple and easy to install. I love it. I have had it before I was even diagnosed with precancer cells in my colon. It is not expensive. I die when I have to go to the bathroom somewhere else. It has never broke either. I sometimes wish it was heated water but instead if I am that bad after I go to the bathroom I then have to get into the tub. I love it!!!! [ more ]
CeeeeCeeee My TOTO seat is heated and I thought it was something I really didn't need because I live in southern California. Well, now I hate sitting on a non-heated toilet seat! After 10+ years, my bottom loves its "bum warmer"! [ more ]
Connie We do. Got a bidet attachment before my son's take-down 12 years ago. It wasn't one the best--the original heated seat was made of a type of plastic that kept breaking. After we replaced it 2-3 times, they finally switched to an unheated seat that does not break. Even so, the rest of the mechanics still work fine, and it has been great to have, prevented a lot of BB. It is one of several things I never would have known about without this site. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Five Weeks out from Takedown...
S Srf1
Srf1 Two more days of surfing yesterday and again this morning! Mornings to mid afternoon have been nice, quiet times for me so far so no problems with needing to go while I've been out in the water. [ more ]
Onwisconsin If youre five weeks out and already able to go surfing and are able to do a physical activity that leaves you away from bathrooms you are already in really good shape. I'm two months out and still getting to that point, but I think I'm on track. [ more ]
Disneynut Wow, that reminded me of girls' weekend 2002 Surf Diva Camp in SoCal...I had such a hard time learning how to pop up. Takes a lot of core strength, so I'm impressed you could do it just 5 weeks take down. Incredible! So glad you're getting your life back! [ more ]
See all 6 replies...
J-Pouch ForumsK-Pouch Korner
Pouch opening, not stoma, too small
D dpol
dpol If I start having trouble again, I will give it a try. [ more ]
skn69 You may want to try using a strait one and see if it is easier to work with now that you have a narrowing???? I used a Medena 30 curved for 29yrs and have had to switch to a strait cath since my recent problems...seems to work in my case...it may be worth the try... Sharon [ more ]
dpol I use the 29fr Weber and Judd that is curved. Started using it at the Mayo and have used it ever since. It is easy on my body. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Not sure what to do next
A Allison
Spooky I agree that the duration seems far too short for pouchitis, or any bacterial infection for that matter. Typically, a prescription would be 10 days. You may also need a combination of cipro and flagyl. When I had my bout of pouchitis, I was prescribed both, and though I am not an expert, from what I've read, the combo of the 2 seems more the norm than the exception. Definitely call your doctor and request another round, and ask about adding the second antibiotic. Best of luck! [ more ]
Epic Scotsman 2 days of antibiotics isn't going to clear things up. I'd definitely go to your doctor and ask for an actual course of antibiotics. [ more ]
Jan Dollar Yeah, when I am on antibiotics for pouchitis symptoms, my doc prescribes a 10 day course, and can repeat another 10 days if necessary. One time, I had to take it about six weeks. Since you've had symptoms so long, you'd think you'd need a longer course. Often, symptoms do not necessarily coincide with the severity of the inflammation. You can have bacterial overgrowth without overt pouch inflammation, with the same symptoms. Jan [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
Do I have pouchitis?
S stpaulmom
stpaulmom I was for a few days but then I felt the same and the doctor wanted to add Levaquin but I'm allergic so for now I've just been grinning and bearing it. And using anti-monkey butt diaper rash cream. [ more ]
temples were you doing better after the few days? [ more ]
stpaulmom I saw the doctor today. He did a scope to look inside the pouch and said it looked like a mild case of pouchitis. He took biopsies, not sure why. I also did stool samples for the last three days, waiting for those results, checking for C-diff, etc. Doctor gave me Cipro and said I should be doing better in two days. I pray he's right! Thanks for your replies! [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Hollywood 48 hour diet
B Bethie
Bethie thank you all so much - it's not for me - it's someone else who claimed they heard this was good and I KNEW it was not!! Just wanted to make sure I was right...you never know. I did call her out on it and she is not doing it...thankfully [ more ]
mgmt10 This is the diet the stars use to drop weight so they can fit into their size 0 dress for the red carpet. I wouldn't do this with a j pouch. [ more ]
Jan Dollar So here is my concern about it: This is a diet designed for folks with a colon. While I doubt it is dangerous, you WILL have plenty of diarrhea, so I don't see why you'd want to subject yourself to it unless you were planning on being scoped or something. The "detox" claim is nonsense. The ingredients are pretty much just fruit juices, known to cause diarrhea if that is all you consume. There is zero protein in this stuff, all carbs for calories. What is the sense in that? [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Whey vs Milk
R Rocket
Spooky http://en.wikipedia.org/wiki/Quinoa Quinoa has been described as a grain alternative; technically it's not a grain. It is gluten free and supposedly very easy to digest. It's also very high in protein. When cooked properly, I would say it it has a texture similar to couscous. It has a slightly nutty taste. You can have it sweet or savoury. I like to add a little bit of cumin to mine, along with chopped tomatoes, but I've also added spinach, zucchini... the list goes on. It's good served cold... [ more ]
Rocket Spooky, Never even heard of quinoa. U will have to look that one up. Thank you. Suebear, Vega Power protein poweders I have seen in my Health Food Store. I know they come in different flavors. Thank you. Rocket [ more ]
suebear Another option you can try is Vega Power protein powders. They are vegan and you can purchase on Amazon for better pricing. Taste is very good for this type of product. Sue [ more ]
See all 13 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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