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J-Pouch ForumsGeneral Discussion
Pouch needs to be widened??? WTH!
M msh98991
CTBarrister Back in 1998 I had a situation in which a "septum" or wall of tissue developed in my pouch. As a result stool was not emptying properly. What it felt like was that something inside was blocking stool from emptying out of the pouch. Testing (pouchoscopy) proved that this was in fact the case. I had 2 surgical J Pouch revisions to correct the situation, one in 1998, and then a second one in 2000 when the "septum" returned. My surgeon at that time compared the J Pouch to the British car Jaguar. [ more ]
jeane Are you sure you just do not need to be dilated at the anastomosis? What were your symptoms? Were you unable to pass stool easily and had to push down repeatedly to empty your pouch? Could you have inflammation going on in the pouch and that is why the surgeon claims it need's widening? I would feel more comfortable in requesting a pouchoscopy probably under sedation to get a full view of the pouch before doing anything surgically to it, that is assuming the fix is a surgical one. I honestly... [ more ]
Guest I never heard of that before. I'd be happy if they could make my pouch as wide as the state of Texas or a Rolls Royce though. I must be stuck with a Rhode Island sized pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Fistula update, rock and a hard place...
n/an/a
n/a Karbear - exactly: I don't want to go through a long recovery, especially since there's no guarantee the fistula will be gone after the surgery! Wouldn't that just cork you?! (Sorry, a favorite expression from my dad when something got him riled up). tammykathleen, I'm with you - I can't imagine how relations can't damage the fistulas, or at a minimum, tug at the base where the seton comes out and cause irritation/pain. Dr. Hull said women tell her they manage, though: if it hurts, they stop... [ more ]
tammykathleen Hi NancyAnn, Thanks for sharing all the info you learned! I have 3 setons and honestly, cannot imagine any relations (married or not, lol) and as I will be turning 34 this fall, this is something I have had on mind in relation to getting pregnant or trying for children... I have also been told that it's OK, but I cannot imagine how that would be... OK? How could it NOT damage the fistulas? I am such a stickler with my peri bottle and making sure everything is always clean down there, I... [ more ]
Karbear That is some great information. Thank you for the update. Like you I would opt to keep the setons in since they aren't bothering you. I too wouldn't want to go through another long recovery at this point. [ more ]
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J-Pouch ForumsGeneral Discussion
Corn on the cob
C Cate87
n/a You can try this: take a sharp knife and run it through each row of kernels. Really -- it's how I tried corn on the cob in the early years and seemed to do the trick. I don't do it anymore and still have no problems, but like noted above, chewing is the real key. [ more ]
Spooky I love corn on the cob and eat it whenever I can. That said, when you're first starting out, go easy. I didn't eat it at all with my ostomy since I had had several blockages, so shortly after I got my j-pouch, I happened to be at a BBQ and ate two back to back; first I had in a couple of years. The next 24 hours was a little rough, though I wasn't blocked, just in the bathroom a lot. Since then, I've made a decision not to be too overzealous with my corn eating. One is often enough. The... [ more ]
Jan Dollar I guess I'm a dummy. The last person I'd ask about my diet would be my surgeon. I figure the surgeon would say the "better safe than sorry" advice. My surgeon just sent a dietician to my room before discharge. The basic advice amounted to "go easy." I went easy, but never avoided any particular food. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Long time poucher needs some guidance please!
TheresaSTheresaS
liz11 Theresa - I recently found some chewable benefiber tablets. I'm undecided whether they work as well as the powder. The powder is so easy though. You can even get it in individual packets so its easy to carry with you. If you don't want to sprinkle it on your food (as certain foods it does make them gross - rice turns into silly putty) you can just dump it in the last part of whatever you are drinking and swallow it. Really its no big deal. [ more ]
TheresaS I was about to come on hear and search about different fibers. The psyllium in Metamucil kills me, but the wafers do good work so I just kind of deal with it. I was wonderinf the different, risk/reward, and variations of different ones. I looked into Benefiber today but would rather not do the powder. Do the caps help?? I can't always take capsuls because the little capsul comes right back out lol. But i can do tabs and caplets. I'm not ready for a scope yet. I don't believe anything is... [ more ]
vanessavy Get a scope GF, never now that's going on ;-) When I am in Florida next month we can talk pouches and pitties [ more ]
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J-Pouch ForumsGeneral Discussion
Low Protein Levels
G Golfguy
liz11 In addition to slowing your gut down... try eating 5 or 6 meals a day. Make sure you have protein in each of those meals. So eat breakfast, midmorning snack, lunch, afternoon snack, dinner, and snack before bed. Snacks can include things like greek yogurt, peanut butter, half an egg salad sandwich, cheese and crackers.. think protein in every meal. good luck. [ more ]
Jan Dollar Your colon and rectum do not absorb protein. That is a function of the small bowel. You probably need to slow your gut down until it adapts. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Have you experienced an abscess?
J ju330
ju330 So last night I changed the gauze covering my itty bitty drain, and noticed a big, bubble-like bump on my midline incision, a few inches away from the drain. And, there was pus oozing from the spot, through the skin. So gross. I contacted my surgeon immediately, and had to go back to see him today. He opened the area and pulled out some stuff, and left it open to drain until it heals from the inside out. Also, they had sent a culture of some gunk from the other day to the lab, and it came... [ more ]
beckysmom Hi. My daughter had a presacral abscess after her pouch redo in May. She kept complaining about a low grade fever every day and no one was concerned at all. Then two weeks after surgery her daily fever went up to 102.8 and into the ER we went. She was in the hospital for 5 days with a drain (through the butt cheek) and first Iv and then oral augmentin. After 5 days they checked and it had collapsed and they took the drain out. That drain was so painful for her and she has a high tolerance to... [ more ]
ju330 I hadn't thought about the possibility of a leak... the other abscess I had was presumably caused by a small leak in my pouch; I spent 10 days in the hospital as well, that first time. Only 5 days the second time. This abscess is a couple of inches below where my stoma was, on the right (my right) side of my abdomen. I'm still experiencing some pain today, though nothing crazy... really, really hoping this drain and antibiotic- Augmentin- kick it in the butt. I will ask my surgeon more... [ more ]
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J-Pouch ForumsGeneral Discussion
Trip To Riveria Maya Mexico Medical Concerns
FM Former Member
CTBarrister hfc, Execllent point and very true, and it is the main reason I never purchased the insurance except on that one occasion. Most consumers who never worked for or with insurance companies, as I have, don't understand that insurance policies insure against specified risks and certain risks are assumed by the policy holder. Many people mistakenly believe that insurance companies will pay if anything bad happens and it does not work that way. For example, people who own homes near the water... [ more ]
hfc Make sure you read the fine print. These policies are tricky! [ more ]
CTBarrister The travel insurance does not just protect against getting sick, but also unforeseen vacation injuries. I personally witnessed a woman on my Club Med charter flight to Turks & Caicos, within hours of us arriving at the resort, suffer a displaced fracture (that means bone sticking out of skin) while playing on a trampoline at the club. I think she was flown to Miami for surgery. I am also aware of my friend's aunt falling down a staircase, also suffering a displaced leg fracture requiring... [ more ]
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J-Pouch ForumsGeneral Discussion
Candies...who here eats them and which kinds?
fqfq
Tawny kelly I love candy I eat it everyday. All kinds I haven't found any type of candy that has givin me a problem! Uc 10yrs. Jpouch 2step surgery 2-18-2011 Recto and vaginal fistula 10-2011 Surgery didn't work out 7-2012 [ more ]
skn69 I'm with Marianne, Swedish fish all the way...and tons of chocolate with or without nuts, raisins etc...and caramels but they sort of gum up the works a bit so I make my own with all natural ingredients. Couldn't live without it. Sharon [ more ]
TheresaS Ill eat a bag of sour patch kids in one sitting. No problems with candy. Im an addict. Life saver gummies i love as well. It may be an individual thing, so give it a try see what works if you havent already. Chocolate tends to not agree with me all that much. [ more ]
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J-Pouch ForumsGeneral Discussion
irrigation system any info?
TK Tawny kelly
Tawny kelly Thank you for both the responses. I don't feel so alone when i get on this site [ more ]
chiromancer I think what you are referring to as a "irrigation system" is for people that have a colostomy and have had their rectums removed but retain the balance of their colons. Irrigating through a colostomy does allow many people to go without a bag for fairly long periods of time. If you have had your colon removed then you will have to get an ileostomy. If you go back to the bag with an ileostomy irrigation will not work as the small bowel is producing effluents all the time. [ more ]
kathy smith Are you referring to a K-Pouch or BCIR? If so, visit the K-pouch forum on this site. There are lots of K-Pouchers and several BCIR'ers who would be more than happy to answer your questions. However, based on the fact that you've had fistulas that may indicate Crohn's disease. The K-pouch and BCIR are contraindicated for Crohn's. That doesn't mean they don't perform those surgeries on Crohn's patients - it does happen. But often the Crohn's isn't definitively diagnosed until some time down... [ more ]
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J-Pouch ForumsGeneral Discussion
late night eating
fqfq
Former Member I eat what I want, when I want. Pizza before bed, no problem. Ice cream, no problem. It doesn't bother me to get up once a night to go to the bathroom. The key is don't turn the lights on. I fall right back to sleep easy. [ more ]
Spooky As with many things, this is also very individual. I don't really have an official "cut off time." I often do eat later in the evening. This does have a lot to do with my schedule, in that a few nights per week I don't get home until after 8, and I need to have a later dinner. Strangely enough, whether I eat earlier/later doesn't seem to really affect my nighttime trips. I'm up about once a night half the time, regardless of when/what I ate. Then again, as I mentioned in another recent... [ more ]
POD Keeping in mind that instead of the volume of a large intestine you now have something the size of your hand I would limit how much you eat in the evening. [ more ]
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J-Pouch ForumsGeneral Discussion
Thinking of surgery - what were you unprepared for?
A ActiveUC'er
CTBarrister Spooky- You are most definitely correct, there are pediatric and adult sized nasogastric tubes based on the research I did on this. My tube insertion was done 20 years ago and I accepted what I was told at that time by my tube inserting doctor who said "one size fits all." They definitely stuck in my nose an NG tube that looked more appropriate for horse nostrils than my small human nostrils. I am still kind of shocked and surprised that it went in without much internal resistance. I... [ more ]
Spooky I was led to believe that there was more than one size since they told me they were using a "smaller one", but beyond that I couldn't tell you how many different sizes the tubes come in. However, even there is "one size fits all" for adults, there is definitely a pediatric size tube. They called down the pediatric ward, and the doctor brought one on his way up. It's the only one that went in and stayed in for me. So there is the option to at least try the pediatric size. Then again, I'm... [ more ]
Kline84 I was unprepared for the pain that came with sneezing right after surgery! The nurses told me to hug a pillow tight while sneezing to reduce hernia risk and help with the sudden jolt. After about a week it didn't hurt so bad to sneeze or cough. [ more ]
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J-Pouch ForumsGeneral Discussion
What to expect with the 3rd surgery!
Uc-DanielleUc-Danielle
Former Member The 3rd one is soooo much easier surgery wise and pain wise at incision site but i did experience ALOT of pain when using my bowels/pouch. I hadn't been to the loo the normal way in just over a year so it took awhile to get use to. The pain wasn't always there only when it was toilet time,this lasted about 1-2wks. Also i would wear a pad to bed at first,i had a couple of accidents overnight during the first week,i guess my body just needed to get use to the new plumbing system It's so worth... [ more ]
Subzeromambo It has been better than I imagined. I am only three weeks out from takedown. Start doing rectal exercises now. Imagine squeezing a pebble inside your rectum and then releasing. Kegel exercises to maintain and tone the pelvic floor are also very important. Having these muscles in great shape will increase your bowel control after takedown.I have the usual butt burn stories from the extra acid in the new system but it is under control now with Questran. I love having a j-pouch. I was shocked... [ more ]
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J-Pouch ForumsGeneral Discussion
2 weeks post takedown!
Kline84Kline84
Kline84 I know reading other success stories on this site helped ease my mind before takedown. I was still nervous going in though. I hope everything goes smoothly for yours! It seems like a lot of what you read on the Internet are problems but as others on this site have told me " the pouchers who have no problems are out living their lives not posting on support forums". Makes sense to me. I just figured I would post my good outcome because I know it helped me reading those good things too. My... [ more ]
Srf1 I should be having my takedown surgery in about six weeks. This is the kind of stuff I like to hear about and hope for. [ more ]
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J-Pouch ForumsGeneral Discussion
5 weeks out...still pooping up a storm!
fqfq
Randi M Fq-I'm 5 weeks out too. My frequency isn't as high but I too have the small dropping and sometimes difficult to pass. I spoke with my surgeon the other day and he recommended trying to hold it in. He said this will help stretch the pouch and buy you more time between emptying thus getting your frequency down. Try not to tend to every urge if possible. He said try to hold for upto an hour if possible. [ more ]
fq thanks, that is reassuring. i described the symptoms over the phone and doc seemed to think it was OK, but i'll double check. 3 months of this could be tolerable. i'm currently missing the ostomy. [ more ]
Karbear I still had high frequency until 3 months out. It could be totally normal or it could be something like Jan suggests. If you think it could be something more, then call your surgeon for another follow-up. [ more ]
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J-Pouch ForumsGeneral Discussion
CCFA Team Challenge Napa tomorrow!
ElmerFuddElmerFudd
SBS Steve, congrats to your wife on a job well done. :-) I've run a couple of races with Team Challenge and I'm now helping to coach the DC-area team. I know how special those events are. It takes your breath away when you contemplate what all the participants have done and are doing for IBD reserch, treatment and support. FYI, Team Challenge is currently recruiting for the fall season. The race is the Las Vegas Half Marathon on December 2nd. I've run this race twice and it is alot of fun. One... [ more ]
Jan Dollar Wow, Steve, that's awesome! Even during my most healthy days, I never was a long distance runner. I could walk fast all day, but run, NO WAY! So I am very impressed with anyone who can run a marathon, or half marathon... Jan [ more ]
ElmerFudd 621 / 3500 participants in the 1/2 marathon were CCFA Team Challenge. They raised a total of $2.4 Million for CCFA. Wow! [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchoscopy
FM Former Member
n/a Whew - great news, tiff! [ more ]
Former Member Here is an update from my doctor today. The ulcers were not from Crohns. I have a mild case of pouchitis, so he told me to continue to take my vsl3. I also dont have to have another scope for 3 years! I am so relived and happy! [ more ]
n/a I feel very good right now as well: no diarrhea, no stomach pain. I did go through a 6-year period where I had flu-like episodes (fevers, very high CRP, some diarrhea, etc.) that no one labeled as Crohn's or explained in any other way, but those episodes disappeared about 1-1/2 years ago, which is coincidentally when my fistulas appeared. I believe it's not terribly rare that ulcers show up in those of us who've had UC. If you do a "find" for ulcers (top of page), you'll find a number of us... [ more ]
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J-Pouch ForumsGeneral Discussion
Question about IVIG and Tysabri
Chris MChris M
Chris M Suebear- I agree and actually already sent my GI an email asking to get me in so we will see how it goes... JillM- I have read a little and an not really digging even trying this med. It took me about a month to agree to the Cymzia and the only reason I did was because my wife was in the hospital and I couldn't travel, but now that she is out I can travel, and my son is doing well I can travel wherever need be... [ more ]
JillM Make sure you really investigate tysabri. I believe this is the MS drug that caused some serious issues, including fatalities in some patients. I also knowmthat many in the MS community wanted to keep the drug anyway because of howmwell it addressed MS symptoms and many were willing to take the risk. So, just really research the drug and be sure you feel comfortable with the potential side effects. [ more ]
suebear Good plan. Before taking Tysabri, I would see him. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
Scar tissue forming?
J ju330
ju330 Thank you so much for the reassuring words. I ended up emailing my surgeon last night when my temperature went up to 100.4, and I noticed that the area that was sore/tender was also a little swollen. I asked him if I should see a local doctor. He responded that he is concerned I might have an infection behind the incision where the stoma was (I forgot to mention yesterday that after that incision had closed after takedown, it opened up again a week or so later, and just recently closed up... [ more ]
suebear We all have scar tissue, and it is normal. As long as you are not having severe pain, or food blockages due to scar tissue you're fine. However, please note that partial obstructions are bound to happen in the first year as you continue to heal, and that is normal too. It sounds like you are doing very well, I know too, that we sometimes get overly concerned when we notice something. All those years of dealing with UC has taught us to be watchful for new symptoms. Relax and take care of... [ more ]
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J-Pouch ForumsGeneral Discussion
Afternoon/evening run of BM's
T Traveller
Spooky I think a lot of this is based on how most of us eat; or more correctly, the North American standard of "3 squares a day" with the larger meals coming later in the day. In my case, don't ever usually eat a large breakfast (and my breakfast usually consists of yogurt and/or oatmeal, 2 foods which keep my pouch happy), so my pouch is typically quietest through most of the morning and into the late afternoon. Things just naturally start moving once food is in the system, so the activity really... [ more ]
Traveller Thanks, I do take lomitol to slow things down, but this pattern is uncomfortable to say the least. Makes it very difficult to have a normal social life. The pouch seems very unpredictable. Between each BM in the afternoons I am sore and pained. There are also a number of people on this site who say they are as good as someone with a colon just that they go more often. I want to be one of those. Is there anyone else out there who is relatively normal. I'd like to hear about your jpouch life? [ more ]
lixxie Ditto what Marianne said. I find it's manageable by monitoring what I eat through the day if I am planning on going out. Eg. stick to bind-y pouch-friendly foods for breakfast/lunch, and eat lightly. Not ideal, but the lack of urgency takes all the panic out of it, compared with the UC days. I'm six years out, and over that time my nighttime trips to the loo have gradually decreased over that period from around 5 times per night down to an average of 1. So don't loose hope that over the... [ more ]
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J-Pouch ForumsGeneral Discussion
Physical therapy for adhesions
J Jeff1959
vanessavy It's called visceral manipulation. [ more ]
Jeff1959 Mostly pressing on the abdomen with her hands and various manipulations while doing this, along with several stretching exercises. It takes very little effort on my part and the therapy is not uncomfortable. [ more ]
tammykathleen Hi Jeff, can you tell us what the therapy consists of? I am curious. Thanks! ~Tammy PS-I am so sorry you had to suffer blockages, my God, they are so rough! [ more ]
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J-Pouch ForumsGeneral Discussion
Non-colon cleanse?
KelseyHey2308KelseyHey2308
Lizzie Knott I would try some grape juice, the purple kind. It helps move things along. Also I drink the dannon probiotic. I think most of us have trouble with gas. It only comes out when we sit down in the bathroom. [ more ]
CeeeeCeeee I use Kathy's method when needed. Most of the time, eating a crunchy Granny Smith apple will keep me regular. I try to eat an apple a day...skin and all. Water, water, water, too! [ more ]
vanessavy Luke warm water enema? Or irrigation. Not sure what the correct term is for jpouches. I would think that could clean it out and easier on the system than a colon cleanse. I clean my BCIR out with water almost daily (depends on how lazy I am) and it is an awesome feeling. Gets all the sludge and build up out. Only way I can describe it is like having high colonics done daily! lol [ more ]
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J-Pouch ForumsGeneral Discussion
Wiping when away from home
U 1970UC
1970UC thanks for the info jpouch888 and 2001! kathy, i love the dead (wait, isn't that an alice cooper song???) :O) i still miss jerry! started seeing them in '87 and still consider them the best live band i have ever seen. i am a music freak...see live shows all of the time! private message me kathy if you wanna chat some music! :O) peace, mark [ more ]
Jpouch2001 I carry a small bottle of cetaphil in my pocket. I had bad butt burn for the first few years, and never since i started using cetaphil every time i use a bathroom. I found that wipes irritated my skin, but a tissue, then a fingertip with cetaphil and then another tissue does the trick every time. haven't had butt burn in years (other than when I am stupid and eat cheesy nachos with lots of hot sauce) [ more ]
kathy smith Both. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
Zinc oxide for butt burn?
C Cate87
Cate87 Great suggestions! I will try all of them. Thank you [ more ]
John95 Cate, I second Kathy's recommendation for Nupercainal. It's an ointment that has excellent numbing qualities, and you should be able to find it in your local pharmacy. The generic name of the active ingredient is dibucaine. I also use Calmoseptine, but I find it Calmoseptine works better for me when I use it to prevent butt burn rather than treat it. In other words, if I know I've eaten something which will cause me trouble later on, I'll apply some Calmoseptine, as it helps to "seal off"... [ more ]
Former Member I use Desitin, like the cream for diaper rash.. Worked very well for me when I had that problem, I think one of the main ingredients is zinc [ more ]
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J-Pouch ForumsGeneral Discussion
Changes to abdominal shape after J Pouch?
D DeathStalker
Rocket Same for me too. My stoma was on my right side so that is the area that is more extended in my belly. Since I had a major staff infection in 1994, 6 months after take down, that area will never be flat. I have one large T-Scar that starts about 6 inches above my belly button and down just below the belly button and then is cross over the belly button as well. I am also not comfortable having this area exposed out in public so no more Ocean vacations, or going into a pool. The other problem... [ more ]
skn69 Yup, in spite of the 3 esthetic procedures that were done (botched?) I still look somewhat silly with a huge fat roll on the right and a sleek and flat tummy on the left plus the fatty side looks quilted by all of the scars...not pretty at all and rather depressing after the attempts to fix. Will perservere and try to have the last 2 huge scars reduced. Sharon [ more ]
Guest No change, I've noticed. I've lost a lot of weight but that's it. [ more ]
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J-Pouch ForumsGeneral Discussion
yes another butt burn question
R Ro
Jpouch8888 The best remidy is to do a sitz bath with very warm water or take a hot bath. Cleans everything and heals it quite quickly. i also found that taking an antacid helps. [ more ]
Rebe0505 by the way everyone ..my go to thing is just plain vasoline..works as good as anything..inside as well as outside.. rebe [ more ]
Ro hmmm ill give that a shot....sometimes i can feel it before it even comes out...like, ill know its going to be a burning one before i even walk to the bathroom.... whats the stuff that can reduce it preventatively again? was it pepto? or just fiber? i cant remembe but ive seem people talk about it. [ more ]
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J-Pouch ForumsGeneral Discussion
VSL #3
FM Former Member
Former Member thanks, I think I'm guna give it a try! [ more ]
Former Member I have been using it for two years! I just mix it in with my yogurt in the morning. I believe it helps me. In fact I just had a scope done and the doctor found that I have a very mild case of pouchitis so he told me to just keep taking my vsl#3 and that should help. I would recommend taking it. I believe it is an added benefit for our pouches! [ more ]
NJK My doc suggested it because our jpouch needs this for proper bowel health. I use it but you have to figure out if it works for you because each jpouch is different. [ more ]
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J-Pouch ForumsGeneral Discussion
Been away a loooong time ...
PollyGirlPollyGirl
PollyGirl Thank you all for your helpful responses. I appreciate the time you took to answer my questions. I am not aware that any of the scans identified any narowing. However as the j-pouch surgery was the 5th abdominal surgery for me, I imagine I am full of adhesions. My insurance covers the services of a dietician so I am planning to make an appointment with one very soon. Perhaps she can help me. I was on prednisone for 18 yeqars and know part of my weight is from that. However I have been told... [ more ]
Jan Dollar Yes, I had to go to an expensive medical weight management program to lose weight, as eating "healthy foods" did nothing in the weight loss department. Turns out it was all about portion sizes, not about fruits and vegetables. The main weight loss was when I had no regular food at all, but only protein shakes and bars, neither of which had much fiber. They must have identified a very tight stricture or area pinched by adhesions to tell you you cannot have anything but low residue from now... [ more ]
Spooky Yes, I was wondering this as well. Unless your surgeon has identified an issue that may lead to future blockages (such as an adhesion or scar tissue) it seems odd that you would have to completely change your diet for one isolated blockage. It's good advice to be careful what you're eating after you've had an obstruction, but generally such restrictions are not permanent. You could certainly cut down on raw veggies, pulpy fruit, popcorn, nuts and seeds, but otherwise I think you should still... [ more ]
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J-Pouch ForumsGeneral Discussion
Ultimate Butt Cream?!
SubskySubsky
Spooky I'm not familiar with any particular prescription cream; perhaps others here can field that question. In the meantime, before you see your doctor, if you want to keep the area protected I don't think there's any reason why you can't use an OTC cream. My favourite barrier cream is and always has been Calmoseptine. Unfortunately, it's no longer distributed for commercial sale in Canada due to labeling changes, but you can still buy it on ebay or Amazon.com and shipping is usual reasonable. If... [ more ]
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J-Pouch ForumsGeneral Discussion
Fart while standing...can this be learned?
fqfq
Spooky I can't do it, not to mention I'd be extremely reluctant to try anyway. The only way I can fart without going to the toilet is to literally lay down on my back with my knees drawn up. It works, but something I'd only ever try at home. [ more ]
Guest Thanks for the kind words Rocket. I've had my pouch for about 6 years longer than you've had yours. At the time I decided upon surgery, I felt there was no more alternatives left, besides a ostomy bag on my list. I like just about anybody else wasn't happy about the ostomy bag alternative. If the fecal transplant alternative http://j-pouch.org/eve/forums/...127041916#7127041916 existed then, perhaps I would have gave that a shot too before settling for the pouch. I have heard of Cleveland... [ more ]
Guest Thanks for the kind words Rocket. I've had my pouch for about 6 years longer than you've had yours. At the time I decided upon surgery, I felt there was no more alternatives left, besides a ostomy bag on my list. I like just about anybody else wasn't happy about the ostomy bag alternative. If the fecal transplant alternative http://j-pouch.org/eve/forums/...127041916#7127041916 existed then, perhaps I would have gave that a shot too before settling for the pouch. I have heard of Cleveland... [ more ]
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J-Pouch ForumsGeneral Discussion
Successful Pouchoscopy
U 1970UC
1970UC Thanks SRF and Dodge! sorry to hear that you have been having a lot of issues dodge. i hope that all changes for you soon and things start to go right. i had some issues in the beginning and i was very discouraged. this whole process is very trying. peace, mark [ more ]
dodge Congratulations, it just so happens that I had mine on the same day as you , but I have a leak so takedown will have to be put back until they put it right. I've had so many complications since the pouch formation surgery in March Im starting to think Ive made a huge mistake! [ more ]
Srf1 Congratulations!!! [ more ]
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J-Pouch ForumsGeneral Discussion
First scope today
mgmt10mgmt10
chrfor That's great news Marianne. Praise God for your great pouch!! Hope things get resolved and you can get to the bottom of your anemia. I find I have a lot of "new" issues since my surgery but my surgeon also says they are not related to the surgery. Odd.... [ more ]
kathy smith Congratulations Marianne! I'm sorry about the anemia but hopefully the hemotologist will figure it out for you. kathy [ more ]
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J-Pouch ForumsGeneral Discussion
Crohn's symptoms?
B BlmBlp
cassiecass evening I also been having vision woes simce last September.This Monday I am seeing a neuro opath MD. My left eye field of vision has decreased.I worn glasses all my life but this is so strange.I been to regular Opath Md x 2 within 4 months.He does not know what caused my vision woes.So off I am going to hopefully get some answers Cassiecass [ more ]
CTBarrister I went through the same thing a few years ago, the sudden loss of vision in a short period of time which manifested in being unable to read restaurant menus without my glasses. I went for some tests, was referred to two different retina specialists and was diagnosed with Central Seruos Retinopathy (CSR) which is characterized by the appearance of "blisters of fluid" near the retina which obscures the retina's ability to see. It is most common in males age 20 to 50 and its cause is unknown. [ more ]
Srf1 I'm going through the exact same thing right now with my left eye. A significant change in my sight over a very short period of time. Been to the Opthomologist four times now in the past month. Same as you it's a cataract that's just built up practically overnight. The doc says it's a result of steriods and UC. He's monitoring it closely right now as there is a much smaller cataract in my right eye also. He says I'm going to need surgery here done on both eyes eventually and wants to time it... [ more ]
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J-Pouch ForumsGeneral Discussion
New J poucher! Advice and reassurance
FM Former Member
Kline84 My surgeon stapled my ostomy closed... It has been about a week and it is healing nicely so far. Still a little bit of blood drains when I get to active but there is no infection and hardly any pain anymore. I clean the area with antibacterial soap when I shower just to make sure I don't get an infection. I have been using Huggies wipes when I use the restroom and haven't had any problems with butt burn yet. I started out only having 2-3 BMs a day but the past couple of days it has moved up... [ more ]
CeeeeCeeee My surgeon stitched my ostomy site closed and is a far better seamstress (male version) than I ever was! No problem with infection. I like Steve's suggestion regarding the introduction of new foods. Worked for me. I was told to stay on the low residue diet for 6 weeks but I didn't make it. I think I lasted tree or four before beginning to reintroduce foods I preferred. What may not work one week might well be fine the next week so keep trying! Eventually, you should be able to eat... [ more ]
Former Member Bethie- my surgeon preferred to leave mine open. He said that it's the chosen method, given that closing it could result in an it pocket and infection. So I just pack it with a bit of gauze 2x a day and cover it with s gauze square and metaphors tape. It's really easy and they showed me how to do it in the hospital. The "bullet hole" started about as deep as my 2nd knuckle on my pinky and about as wide as my pinky too. after 12 days it's much shallower and I can see the bottom of the hole... [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch Surgery Consult
M MJP79
TE Marie I suggest you find out how much of your rectum they will be leaving with your rectal cuff. This is what they attach your j-pouch to. The most common method is the double stapled one. There also is a hand sewn with mucostomy advancement - something like that. With that one they scrape or strip the mucosa of the rectum that is left, to eliminate UC cells, and then sew the j-pouch to it. The double stapled procedure allows for better control of your BM's but the 1-2 cm left in of your rectum... [ more ]
mgmt10 You can ask how many steps they would do the surgery in. Also if it would be done open or laparoscopic. What the expected recovery time is. An important question to ask is how many j pouch procedures has this surgeon done. Obviously you want someone that has done many. This surgery has been a life saver for me. As tough as it is to get thru, I would do it over again in a second. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Average # of BMs for older pouchers
C chrfor
TE Marie The number of times doesn't bother me it's the pain I'm still having 18 months after take down. I still would choose the surgeries over and over again and wish I'd had them years before I did. Hopefully I will not have to take pain medication forever but if I do I do, I am alive. If I'd let nature take it's course I wouldn't be alive to feel the pain. Some of us see the surgeries as a second chance and some of us prefer to be bitter. That's the difference between us all, some see the glass... [ more ]
Joannab70 I have had my pouch for 15 years! I would say somewhere between 6-8 times a day but it varies. I only take generic lomotil. I asked my surgeon, Dr Harris, the same question and he said its hard to get results because everyone takes their medication differently. I think it is a personal preference to how you feel. I take 2 lomotil in the morning and then I don't go all day (I'm a teacher) and then when I am home I use the bathroom as needed. I don't get up at night ever!!!! If I am going out... [ more ]
mgmt10 I can only speak for myself of course but even if the j pouch isn't perfect, I will take it any day over that horrid, diseased colon I had inside me. I think most j pouchers who sufferd with severe UC would attest to that. [ more ]
See all 35 replies...
J-Pouch ForumsGeneral Discussion
Pentasa suppositories
F Fazz
TE Marie Rocket, I would be happy with 10 per day, lol. Seriously, I was told by the Mayo doctor, that did my last flex pouch scope, that the size of my pouch was great and after I get into remission, from my cuffitis, that I should only need to go 4-5 times a day. So I think there is more to factor in other than what others do. Some people have smaller pouches and some larger. It all depends on how much "raw material" your surgeon had to make it with. [ more ]
Rocket Thanks Jan. From what I am reading on this site, with some effort on my part, there is no reason why I have 10 BM a day as compared to others who have a great Pouch and go from 4 to 6 times a day. Rocket [ more ]
Jan Dollar No, not at all. There are no antibiotics in them. Please do not be afraid to use them, but you can reduce the frequency to a maintenance level. I got sick of the suppository thing, and just take oral for the past 12 years, and save the suppositories for flares. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Can Cipro cause bursitis?
clz81clz81
clz81 Thanks Jan! Always good to have an expert in the field weigh in their two cents :-) [ more ]
Jan Dollar No, I sincerely doubt it, since bursitis is a different sort of inflammation, although it can and does occur with tendonitis. I have tendonitis all the time in all sorts of joints, so I would not know if I had Cipro side effects or not. I guess it is a good thing I don't need it. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
FUN never ends...
C Cate87
Jan Dollar Yeah, sometimes you just have to do what is necessary. At least you have some wiggle room there to take for some time before considering alternatives. The bad news is that there really is nothing much to aid in motility. The other drug, Propulsid, was pulled from the market due to dangerous cardiac arrhythmias. Same story with Zelnorm. Some doctors prescribe erythromycin as a prokinetic agent. Jan [ more ]
Cate87 Thank you about the reglan concern. I already googled it and am aware of the awful long term side affects. I was only given 28 pills taking 3 a day. Once I'm done I'll ask for something else. Thanks! [ more ]
Jan Dollar Yes, for the short term, Reglan should be fine. But long term, not so much. My step mom was on Reglan for gastric and gut dysmotility for more than a decade. She subsequently developed Parkinsonian-like symptoms. I was the one who spotted them and urged her to follow up. Her neurologist immediately suspected the Reglan and discontinued it. Her symptoms improved a little, but did not really resolve. What we don't know is whether or not the drug actually caused this or just revealed an innate... [ more ]
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J-Pouch ForumsGeneral Discussion
A minor victory
ManchesterManchester
CeeeeCeeee Last night dinner for me was a bag of microwave popcorn! I've been lucky in that popcorn has been a friendly food since my surgeries ten years ago. Even the large diet coke I wash it down with sits well with me. As I said, "I'm lucky." [ more ]
CTBarrister These posts remind me of my recovery from step 1 at Mount Sinai Medical Center in NYC. I was hospitalized for 8 days, had many complications, was hooked up to an IV and eating nothing. I had a roommate who had leukemia, and his devoted wife would bring him takeout from his favorite Chinese restaurant every night and they would eat it in the hospital room he shared with me. The leukemia apparently did not spoil his appetite. Unfortunately, however, those were the last weeks of his life, as he... [ more ]
mgmt10 That's funny Jan. I had my surgery in Philadelphia so by the end of my stay from my step one I was dreaming about the famous Gino's cheese-steak sandwiches.(especially after 10 days of hospital food!) We stopped there after my discharge from the hospital and I shared one with my hubby! [ more ]
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J-Pouch ForumsGeneral Discussion
Home Again after Step 1 of 2
S Srf1
CTBarrister Don't overdo it! You may have to suspend your usual cleaning routine for a while. Or get someone to help you. [ more ]
Srf1 Thanks everybody! I got a call from the home care nurse this morning and she's stopping by soon to check me out, set up a visiting schedule and get all of the supply stuff sorted out. I've been puttering around the house trying to clean stuff this morning after being away for so long and I'm already tired. [ more ]
1970UC congrats srf1! glad to hear you're home. sounds like you're doing great! i am 7 weeks post-op surgery 1 today. i go for my pouchoscopy tomorrow and then will schedule a pouchogram 2 weeks from now. if all good, then schedule step 2. holly is right, the time between the 2 surgeries does go fast. i can't believe i am 7 weeks post-op already. but i too am counting down the days until step 2. not really into the ostomy. if i had to live with it for the rest of my life, i could and would make it... [ more ]
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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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