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J-Pouch ForumsGeneral Discussion
Cleveland Clinic Visit time?
vanessavyvanessavy
vanessavy Thanks guys. I planned on calling Monday either way to make sure they knew I had to try to be on schedule. I am planning on moving back up to the North East by December so it will be nice to establish a relationship with them for my FAP maintenance. Even if he sees nothing wrong when I go there, like everyone else! I have a plan for that. [ more ]
pauln vanessa,i hope dr shen can help you,good luck [ more ]
liz11 vanessa-he will most likely want to scope you. He doesn't trust readings and reports from other peoples scopes. Rightly so. I'm a perfect case in which my local GI should've caught my major problem on my scope but instead let me suffer for nearly 6months. Shen caught it in less than 30seconds. So like nancy ann said.. call and see if they will schedule scope in advance. If not I think a one night stay would be appropriate and just tell dr.shen thats all you are in town for. He will find a... [ more ]
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J-Pouch ForumsGeneral Discussion
2 or 3 months healing for takedown?
G Guest
Guest thank you for replying [ more ]
karensmith My surgeon bumped up my takedown due to my body's difficulty with the loop. It was of course dependent on my pouch test for leakage. My surgeon said ordinarily she held hard and fast to the three month schedule but my poor health and nutrition caused by the loop was not doing me any favors. [ more ]
Guest whats your date? ill be there oct 12th and maybe even sooner... [ more ]
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J-Pouch ForumsGeneral Discussion
Heartburn
A akteacher
akteacher Thanks for responding vanessavy! I am going to try some of this. The heartburn I get is more in the center of my chest - sometimes I think I must be having a heart attack, it's so bad! I will have to try some of your suggestions.....anything to get rid of it!! [ more ]
vanessavy For me Nexium was the best. I take sublingual prescription previcid now and it got my gastritis and esophogitis under control. Ask your GI about those 2. Otherwise I don't know for foods. Anything without acid of course helps. Once i got it only meds helped. I had a wicked bad case the other day, not sure why. Maybe coffee to soon to going to the gym. Bread made it worse I noticed and plain water didn't do much as well. It sucks to have. I have a hiatus hernia due to it. Maybe some warm... [ more ]
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J-Pouch ForumsGeneral Discussion
Recovery time & Why?
M mom2panda
gleam I had my colon and rectum removed March 5th. I too thought I would be out 2-3 weeks. LOL. I don't think I was off the Oxycodone for six weeks. I had an abscess that had to be drained. That was the worst pain next to an exposed tooth root. I still haven't returned to work. That's six months! I am just now getting strong enough to brave the hot summer temps. Dehydration is no joke. My body was acclimated to very little water due to my job. I had a leak that finally healed on its own. Take down... [ more ]
Onwisconsin I didn't work at all after the temporary ostomy was put in: I had way too many problems with breaking seals and skin breakdown. I took about a month off after my takedown was performed. For me getting over the pain was a matter of a just two weeks. Getting to the point where you feel comfortable may be the 3-4 months he was talking about. I'm one month and a week out and I'm not comfortable yet, but I cannot afford to continue to not work. I'm back at work, honestly I would like more time,... [ more ]
mom2panda Thanks everyone. I'll just see how it goes. It's encouraging that many of you had a decent recovery. [ more ]
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J-Pouch ForumsGeneral Discussion
when did you start to love your jpouch?
fqfq
JJA Day 1!!! I distinctly remember the first time driving after I got it, I had an "urge" to go and instead of hurriedly looking for a gas station or fast food place, I just "held it". I was in heaven!!! I laughed out loud when I realized I'd been sick so long, I'd forgotten what "holding it" even felt like! [ more ]
new2thisstuff FQ- I think my biggest improvements from month three to five were less burning, more control, less anxiety and I think about the pouch less because my scarring is improving more and more with time internally and externally so I don't feel the scars as much or notice them as much which makes me think about things less . I am starting to like this surgery more and more as time goes but it's an adjustment that takes getting used to. Just remind yourself of the positives as much as possible. No... [ more ]
fq thanks! i'm looking forward to the day that I forget I even have a pouch! at 3 months out, I think about it a LOT....BUT I am seeing small improvements here and there. both mental and physical. being able to "hold it" a bit longer, for example. i hope it gets better and better still! [ more ]
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J-Pouch ForumsGeneral Discussion
conservative vs. aggressive Doctor styles
fqfq
Onwisconsin Subzeromambo- just curious, what kind of drugs were your doctors not willing to put you on and why did you agree to a surgery before you felt all options had been tried, or had something drastic happened? I went on every drug possible, Asacol, Prednisone, another I cannot think of, and the big ones Remicaid, and Humera, each one progressively failed to produce results after an initial period of them working. My colon still had to go. So there's no guarantee that would have made a difference. [ more ]
Former Member I agree-the best doctors are conservative or aggressive depending on the situation. But if you doubt your doctor's advice, the best thing is to get a second opinion to see what another doctor would advise on the same situation. [ more ]
Subzeromambo My gi was conservative. That is why I lost my colon. He would not give me the aggressive drugs I needed for a severe flare. My previous doctor was aggressive which scared me but I bet she would have given me the transplant rejection drugs I needed to save my colon. I think the best doctors are both conservative and aggressive depending on the situation. [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic Cramping
O Onwisconsin
Onwisconsin well, thank you for the great suggestions. I know I probably didnt give enough info. I finally realized my cramping co-incided with taking Imodium. I may try Imodium multi purpose with silmethicone for gas. It was a painful few days and I should have realized sooner what was causing it. But I wasn't sure because I also introduced a few new foods in that time. Has anyone also had problems with Imodium like that? Have any that had problems with gas used multi purpose and found it worked... [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouch Diet
F Fazz
suebear I eat everything; whole grains, popcorn, nuts, seeds, fresh fruits and vegetables, etc. You can eat anything. If you are trying a new food, eat a small amount and see how it affects you. One of the biggest misconceptions about this surgery is that you have to live on a limited diet. Not true. Sue [ more ]
Onwisconsin My doctor told me to go for whole grain things. Whole grain bread, whole grain pasta, he told me to make it a center of my diet and attempt to get 20 to 25 grams of fiber a day to bulk up the stool. [ more ]
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J-Pouch ForumsGeneral Discussion
Lots of Complications.......But Still A Success?
fqfq
Epic Scotsman 1. 2 step surgery. December 2011 & March 2012. 2. I had an abscess in my pelvic floor that resulted in a 9x9 cm fluid mass that had to be drained and stuck me back in the hospital for about 5 days (and the drain had to stay in for about 2 weeks). 3. No. 4. I really felt successful after I was able to go back to my karate class and grapple for 2 hours (on the ground, no holds barred). Mostly I started feeling like a success story after I started feeling like my old self again, after 5... [ more ]
JenniferG 1. When was your surgery and how many steps?6/11 step 1, 9/11 steps 2 & 3 together. 2. What were your complications? My wounds (one laproscopic and one regular incision) opened wide up and I had to pack them with gauze for 2 months. Blood from cuffitis - just a little every now and then. Now it seems I may have a incisional hernia near my stoma site (seeing a surgeon on Thursday) 3. Are you still dealing with any of them? occasional bleeding and hernia 4. When could you say with... [ more ]
mgmt10 1. Two steps laparoscopically: 1st step 6/25/10. 2nd step 10/8/10. 2. Complications: abscess/infection after step one. Had to have a trans gluteal drain in for 6 weeks. After takedown, reoccurring anal stricture. Needed 6 quick in office dilations. I don't really consider the stricture a complication though. 3. Not currently dealing with any j pouch issues. It's all good. 4. I considered my surgery a success from day 1. I felt instantly better after my rotten colon was removed. [ more ]
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J-Pouch ForumsGeneral Discussion
sugar or after eating make you sick to your stomach
C commandz
JenniferG Most sick: certain fried foods (must be the grease because some I can eat just fine and others make me feel icky) Second: too much sugar Thrid: raw veggies I still eat the stuff but It doesn't always treat me kindly. [ more ]
commandz I am a little bit over a year post takedown. Maybe because it's because I eat too fast. Just feel blah. [ more ]
fq how far out are you from your takedown? I noticed improvement in month #3 (I am in month #3). In the first couple months, I felt like there was a baby kicking inside my pouch whenever I ate!! Baby kangaroo! i got on antibiotics and felt better, so maybe there is some bacteria imbalance? i also felt sick when i had lots of gas and gas pains. maybe try some beano or try walking around more and drinking more water after your meal? Or smaller meals throughout the day, and chewing well/eating... [ more ]
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J-Pouch ForumsGeneral Discussion
The Internet vs. The Doctor
fqfq
skn69 Fq, My surgeons have always listened to what I have to say, what I believe may or may not be right for me and alternative treatments that I may have heard of here or on other boards or from more savy members...They are always willing to at least consider new information and have even done certain procedures on me that we have elaborated together...I often tell them what is being said or done on the board and works or doesn't...I am fortunate that I have doctors who medical skills depass... [ more ]
fq thanks everyone for the great advice! i truly appreciate it, and will think about this next time i go on a google frenzy for each and every health problem! I wish I could marry a doctor so I can pick his brain all day hmm...second thought, that union might not last! [ more ]
JenniferG Well, you have to filter the bad from the good but the information I've gotten online has been far better than what my doc gives me. [ more ]
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J-Pouch ForumsGeneral Discussion
pros and cons of anti depressants and which ones
G Guest
Spooky chasingtime, you sound like you have a ton on your plate. I also had emergency surgery, and I went through a rough period afterwards; I know it can be hard to adjust to the changes in your life, especially when those changes happen so suddenly and are so widespread. Have you considered therapy? A counselor or psychologist who has experience dealing with chronic illness might be of great benefit to you. A therapist can teach strategies to help you cope with the changes in your life and move... [ more ]
Guest thank you. im not a patient man and i do not like meds. i agree they cant be prescribed on here i was just looking for experiences. i have been very active from early on. we came to florida to try and live with my colitis in a milder climate but ended up with emergency removal of colon so we are mostly alone here. my folks are here to help us cope but we are moving home after takedown and the stress and anxiety of getting home is killing me. we have over 100 friends and family waiting for us... [ more ]
Guest thank you. im not a patient man and i do not like meds. i agree they cant be prescribed on here i was just looking for experiences. i have been very active from early on. we came to florida to try and live with my colitis in a milder climate but ended up with emergency removal of colon so we are mostly alone here. my folks are here to help us cope but we are moving home after takedown and the stress and anxiety of getting home is killing me. we have over 100 friends and family waiting for us... [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone have trouble adjusting to probiotics?
H Hope 777
TE Marie I think the pamphlet with VSL#3DS says to do 3-4 hours between it an antibiotics. I don't know for sure but that's what I've been doing and I have "brain fog" moments. [ more ]
TinCan notsotough - I am also taking cipro for pouchitis but was adivsed to take the vsl3 simultaneously. Two or three hours after taking the cipro I have been draining a packet of vsl#3ds. By the way, I noticed in your signature that you have joint problems. Are they related to your pouchitis? I ask this because I apparently have developed a case of pouchitis arthritis - effecting primarily my knees. [ more ]
notsotough I am just finishing a course of cipro for pouchitis and then will try VSL3 as advised by my gastro consultaant. Willing to try to see if will stop pouchitis returning. Will let you know. [ more ]
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J-Pouch ForumsGeneral Discussion
Doctors that have JPouches?
Mhg26Mhg26
Mhg26 I can't imagine what his parents or girlfriend must have felt afterwards. But sad as it is - it is life. Just reminds us how fragile and unfair life really can be. Hfc- that's absolutely great to hear that you manage to still work as a cardiologist after dealing with UC and now with a JPouch. Also incredible that you can run so many miles so often! Must be in amazing shape. Also I like your attitude towards the good days and bad days- I can relate to that but I hope that others without a... [ more ]
Mhg26 Wow thank you all for your responses and for so much positive support! I love this forum, and I feel like each of us on here has a special connection to everyone else. Dog day- yes I agree- we all usually have to watch what we eat and make sure our muscles down below are strong and flexible. Killcolitis- that is truly a depressing anecdote [ more ]
cassiecass GOOD MORNING Follow your dream .Never let a health issue stop you.Last week I was scoped for the first time since my take down.I meet a young gentlemen who is a Doctor of Anesthesia who has a pouch also.He also has been thur alot with it.We talked and talked about foods which effect us.We now are internet buddies .He practicing and living his dream as an MD Go for it... He told me he was not guided either properly and did he own research to get to the level of health he is in. FOLLOW YOUR... [ more ]
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J-Pouch ForumsGeneral Discussion
belladonna-opium suppositories
FM Former Member
TE Marie They only find new drugs to treat us with when it happens accidentally, like remacaide et all. The companies that do make some of the meds we get really stick it to us too. My canassa suppositories cost over $18 each! That's after the insurance adjustment! No one wants to invest in making generic ones as the market is too small. Dirty Rotten Scummy Scoundrels! [ more ]
Former Member Im having the same problem! I called Cleveland and even they can only send me 48/60 of them because they're on back order!! it's ridiculous. I've been told there's a shortage of basically all drugs right now due to companies losing money on them. I hate big business. I'd almost prefer to just get surgery again and fix the problem for good. [ more ]
liz11 pm the other liz. Lizz is her screen name. She takes these, also prescribed by Dr. Shen. [ more ]
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J-Pouch ForumsGeneral Discussion
Dilation question
M MarkGregory
notsotough When I had a stricture recently the surgeon said he could not get a finger tip through the opening- casued pain. At dilatation under GA I recall the surgeon saying that he dilated to 2.4cm ( diameter) with a Hegars dialtor.like mgmt10 it felt so much better immediately after the procedure. [ more ]
mgmt10 I have no idea specifically how small the opening is when it needs to be dilated. I had to have 6 dilations done over the course of a year. It finally is staying open now. All I know is every time it was done it was instant relief and I noticed a difference right away. [ more ]
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J-Pouch ForumsGeneral Discussion
Back to work
V vstRN
CeeeeCeeee Your situation is challenging, even without the added pressure of having a new J-pouch. Sometimes just being prepared as best you can will lessen anxiety regarding this issue and will likely lead to fewer occasions when you will need to use the bathroom. By being prepared I suggest wearing adult diapers and making arrangements with a teacher next door to cover your class if you should have to "leave" for a few minutes. Best wishes! [ more ]
CTBarrister In my early days after takedown antispasmodics like bentyl, levsin, lomotil and donnatal, taken 45 minutes before meals, were lifesavers. My surgeon told me I had a "spasmodic pouch." This calmed down within a year or so after takedown. The downside is that these anti-spasmodic drugs, while slowing things down and calming down the excess motility, also made me feel a bit loopy. I only take one at bedtime now. [ more ]
Onwisconsin I would also be really appreciative of comments on this. I go back to work this week and I'm just one month post surgery and still going almost every hour past noon until I fall asleep. I eat plenty of fiber and have a system away from the house to prevent soreness, but I really need to be able to take less trips while at work, especially as a substitute teacher. [ more ]
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J-Pouch ForumsGeneral Discussion
Any Aussies out there who need K pouch surgery?
skn69skn69
Adroen I'll bounce it too. I highly doubt it will make a difference though. Thanks for your support and help though Sharon. What an awesome country I get to call home.... Ad [ more ]
skn69 I am bouncing this up to the top again hoping that someone will reply....if you are from Austrailia and have a failed j pouch, cannot have a j pouch, an ileo that makes you miserable (not all do, some of us are very happy with their ileos and do not want to change) or any other situation where you are interested in a K pouch or have one that needs work then please PM me or post something. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Life after takedown (1.5 weeks post)
U 1970UC
1970UC that sounds great srf! glad to hear you're doing well. i hope you continue to do well and look forward to reading your updates as we both progress through the adaptation process. peace, mark [ more ]
Srf1 Hi Mark, I'm doing really well so far. They sent me home from the hospital last Friday and I'm averaging 8-9 BM's a day right now with most of them in the early evening. The pain is pretty much under control and I've been up and out of the house early the past few days taking some long walks on the beach. I've had a few minor episodes of butt burn but nothing terrible. I've been real cautious so far on eating trying to get a good handle on what works and what dosen't. Glad to hear you're... [ more ]
1970UC hey srf1...howare you doing? you had your takedown last week, right? peace, mark [ more ]
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J-Pouch ForumsGeneral Discussion
Working on ships - A bowel obstruction question.
MJ Manuel J.
nikiki Manuel, I had bowel obstructions about every 4-6 weeks for a year. They all resolved on their own with a liquid diet, stretching, hot baths, etc. Know the symptoms of a bowel obstruction well. Unfortunately, the final one I had landed me in the ER, but the emergency team could't find the obstruction on the imaging so they waited to perform surgery. When my body went into shock after 17 or so hours they decided to take me into surgery. 90% of the small bowel died because the blood supply had... [ more ]
Former Member I have had 4 bowel obstrurction since my takedown surgery on 7 May 2010. I had surgery with two of them but I had plenty of time to get to a hosptial. I know on a ship you will be hours away but don't let this hold you back. I hope you stay with what you want to do good luck. [ more ]
Manuel J. Thanks alot guys, that's good to hear. No, i never had a blockage or obstruction. (and btw, the "doctor" on the ship might be me, since on freight vessels there are often only like 10 people and a second or first officer usually takes the role of "medical guy".) [ more ]
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J-Pouch ForumsGeneral Discussion
Hair loss
Uc-DanielleUc-Danielle
Uc-Danielle I would rather not cut my hair. I have been trying to grow it back out for awhile now. I was blessed with thick hair so, so far it's ok. But I'm really worried about it and I know that makes it worse. I was losing my hair before the take down so I'm really hoping it's not what you said. That really scares me. My hair has been the one thing that I love on my body. I have my follow up in clev in October and hopefully they can give me answers. It just scares the crap out of me. [ more ]
Manuel J. Not to scare you, but if it falls off in spots it might be alopecia, which i got after takedown. An autoimmune skin disease. I'm completely bald now, sucks, but what to do? [ more ]
BarbieG I know how u feel. I lost quite a bit of hair since my last 3 surgeries over 2 years ago. It takes time to grow back. Try not to get stressed out over it. Stress also causes hair loss, but the anestethesia is the worst culprit. Eat gelatin for your hair & nails. Use a wide tooth comb too. Cut it short & it will look thicker. At least you r in good company! [ more ]
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J-Pouch ForumsGeneral Discussion
Encouragement for new J Pouchers
C chrfor
chrfor It does get better and better as time goes on. Hang in there hon! [ more ]
Angeltears So happy I found this site I'm 5 days post op from illeostomy take down ,I had a my rectum removed and a j pouch made 3 months ago due to having stage T2 bowel cancer at 35 I just got out of hospital today and bowels have only just started to work it scary when you dont know whats happening is normal and this site has been so amazing in the short time I have started reading thank you for sharing your journeys to help people like me [ more ]
mgmt10 Roberta, Glad to hear you are turning the corner finally! [ more ]
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J-Pouch ForumsGeneral Discussion
2 week post op take down
Uc-DanielleUc-Danielle
Uc-Danielle Yes I went to class not even a week out. And I ran out of Pain meds and it was a pain in my butt literally to get more they thought I was just laying at home and I wasnt. I get questioned bc I'm young about my pain and it sucks. Like now I can't sleep the butt burn is killing me and idk what to do. I just want to cry [ more ]
Onwisconsin To chasingtime. My Doctor is Dr. Harms of the University of Wisconsin Hospital. I only say that because I know he's not some random doctor and has done several hundred of the surgeries, it is his primary surgery he performs and people come from around the country to have him perform the surgeries. All of their pamphlets and printed handouts I've received from them as well as talking directly to Dr. Harms has told me to once food is passing through to start slowly increasing the fiber in the... [ more ]
Guest im confused about the high fiber from your doc. whats his theory and is it working good? all ive read says no whole grain... [ more ]
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J-Pouch ForumsGeneral Discussion
seems like most meds have bleeding risks.
G Guest
TE Marie I'm on bupropion and citalopram and they don't make me bleed. I'm on the pill form. Don't get anything time released or coated as they need to dissolve before hitting your pouch. I always eat before taking them, even if it is just a few crackers, plus drink a glass of water as well. It probably is situational depression. There is noting wrong with trying antidepressants for a while. It doesn't mean you have to take them forever. You might want to consider seeing a therapist too. I agree with... [ more ]
Guest AGREEEEEEEEEEEEEEEEEEEE!!! so what does someone do to boost mood naturally then? im tired of this feeling of dread. it came out of nowhere. ive been on the chopping block at least 5 times before. why now? [ more ]
Guest AGREEEEEEEEEEEEEEEEEEEE!!! so what does someone do to boost mood naturally then? im tired of this feeling of dread. it came out of nowhere. ive been on the chopping block at least 5 times before. why now? [ more ]
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J-Pouch ForumsGeneral Discussion
guys can you help me find some joy please?
G Guest
Onwisconsin Pre-takedown was maybe the worst time of my life. I'm assuming you have an ostomy and external pouch. I just couldn't stand it. My seal broke ALL the time. I couldn't work because my stomach was always awash in acid. I cried often because I felt useless and I worried the pain and inability to work would never end. You're not alone. Those 2 months were awful for me. It got a lot better right at the end. Suddenly my seal wasn't breaking, I had a routine and knew when to set my alarm once... [ more ]
skn69 I am not sure that I can give you any joy but how about a bit of hope? I am not going to tell you that this is going to be a cakewalk and I won't pretend that you won't have some pain and suffering (the I.V.s hurt me the most, the rest was taken care of through morphine drips ) but I can tell you that once the pouch is in there and you start getting some improvement (going a few hours without twisty-nasty cramps and bloody runs) and as you start to feel idy-bidy triumphs you will feel like... [ more ]
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J-Pouch ForumsGeneral Discussion
wish i hadn't
P pauln
Uc-Danielle I had all 3 of my surgeries at the clev clinic and they were performed by Dr.remzi and I would recommend him! He saves my life. [ more ]
LionsPride Don't take this the wrong way, because I sincerely mean it in an attempt to help. Just go back to the ostomy if you were ok with it. I've seen enough of your posts to know you don't have the personality and mental disposition to be able to tolerate the trial and error that will be crucial to your getting happy with the pouch. Just save yourself the hassle and go to the end ostomy. [ more ]
pauln Thank You all for your advice and counsel,but i will not live like a second class citizen,unfortunately i discovered too late these operations are a fraud,i felt better when i had ulcerative colitis,should not have listened too my local GI who advised these operations where necessary because i had low grade dysplasia,i researched and found out this is baloney.These operations have made me wish i was dead. [ more ]
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J-Pouch ForumsGeneral Discussion
Home after Takedown Surgery!
S Srf1
TE Marie Congratulations! It's great to hear about a good surgery and recovery! I hope you have a continued smooth boring recovery [ more ]
Srf1 Thanks Marianne, I had a decent night last night. No leakage at all which I think might have been brought on in the hospital from being so groggy from the pain meds. I was only up a couple of times and again with no urgency. They have me back on a Prednisone taper yet once again following surgery and the Prednisone side effects have been the worst part of it so far. [ more ]
mgmt10 Congrats! Glad you are doing so well. I will never forget a few weeks after takedown I went to my favorite burger place and had a cheeseburger, fries and a milkshake. I don't think anything ever tasted so good! It was so long since I was able to eat something like that because of stupid UC. But definately stick to a boring diet right now until you heal a little more and make sure to drink plenty of fluids. Continued good health to you! [ more ]
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J-Pouch ForumsGeneral Discussion
I've noticed something...
Epic ScotsmanEpic Scotsman
Srf1 I truly believe that your personal outlook has a huge effect on how you adapt to your new J pouch. The "Is your glass half full or half empty" sort of thing. If you think positive and stay optomistic you're going to do yourself a lot more good in the healing process than if you are being constantly consumed by worry, stress and anxiety. [ more ]
vanessavy I am the same way. I tried that awful VSL and I swore it worked but I was on an antibiotic the same time, tried to transition. 2 weeks into that and Align I had horrible bacteria infections that I had to go back on Omnicef (best antibiotic I use) to be back to my new "normal". Probiotics MESS me up big time. And my stool never smells but on probiotics I swear my whole house smelled like a sewer line exploded. [ more ]
Epic Scotsman fq: The only thing that has ever really wonked things up for me is probiotics. I've tried them on 2 separate occasions and each time I've gone on a round of antibiotics to kill them off again. I know I could just wait it out until the effects wear off, but I'm impatient. My toilet visits range from 5 minutes to 30 minutes, but the longer ones usually are more due to my reading internet articles on my phone than anything else. Generally things take about 5-10 minutes if I'm focused on the... [ more ]
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J-Pouch ForumsGeneral Discussion
UC with gastritis/duodentits?
K killcolitis
mgmt10 My GI doc used to have me on Nexium when was on Prednisone. Wish I could be of more help. It sounds like she is a bit more stable now and that's good news about not showing signs of CD. I hope she was able to enjoy her summer. [ more ]
killcolitis Hi Marianne, Yes, that's one possibility apparently. I've been trying to google this but not finding much. She has been given a PPI to take with the pred - I assume it's for this reason? [ more ]
mgmt10 Could what they found in her stomach be caused by the prednisone? Especially if she has been on a lot of it lately. I have heard of people having stomach problems because of it. [ more ]
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J-Pouch ForumsGeneral Discussion
pregnancy and an ileostomy
S sally85
JillM Any abdominal surgery can make it difficult to get pregnant. Other things that complicate the process are age and just your body - minus surgery you might still have had trouble. The good news is that I carried two babies with a perm ileo - after IVF - and both were full term healthy babies. [ more ]
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J-Pouch ForumsGeneral Discussion
Rectal bleeding with ileostomy
S sally85
sally85 Thanks everyone for your replies, thats really helpful and reassuring x [ more ]
liz11 This is normal since you most likely still have your rectum in place if you had UC. So your rectum is still sick with UC and acting accordingly. If it is bothersome or painful ask your surgeon about treating it. Either hydrocortisone or canasa suppositories might help. [ more ]
ke353 Yes, it's normal. I was still a little out of it when my surgeon told me I'd pass mucus so the first time it happened was definitely scary! I didn't realize anything was still hooked up or that producing mucus is just what the intestines do. [ more ]
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J-Pouch ForumsGeneral Discussion
Ever log onto this website and feel like you can't relate?
FM Former Member
Rebe0505 hi putting in my two cents..i wish i had know about this site the first two awful years after my operation because my surgeon made me feel worse about my issues..like i was the only patient he had with my problems in 30 years!! i have learned a lot on this site hearing things from the people who know first hand about issues after jpouch surgery...in fact after 3 major bad,bad years i learned finally my sad state was because i had chronic pouchitis(which my surgeon never recognized)this site... [ more ]
mgmt10 NJK, PM me if you are interested in joining the facebook j pouch group(s). [ more ]
vstRN I am definitely grateful for this site. It has helped me so much through this, I have gotten some really good tips and it is still a great source of info. So thank you to everyone! However, it also has scared me half to death. I just wish I had known about this site before surgery because I don't think I would have gone through with it. [ more ]
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J-Pouch ForumsGeneral Discussion
Diet
F FrustratedButFighting
FrustratedButFighting Okay since you all were so helpful with my last post- I have yet another question. I have seen on several sites that with an ileostomy you can have cereal as long as it is refined cereal. What the heck cereals classify as "refined"?! I know with all the attention being on whole grains that's all I see on the cereal boxes. Any advice or do any of you know of any refined cereals or other cereals that have been "safe" for any of you to eat without issue? Thanks again in advance! [ more ]
CeeeeCeeee Guess I was lucky. After severely limiting my diet while in the throes of UC, I was able to eat/drink everything during the year I had my ileostomy.....everything! Now, 10 years post takedown, the same goes with my J-pouch. Try a food you want to eat and if it works for you....continue. If it doesn't, hold off for awhile and try it again later. Best wishes! [ more ]
Nice Nurse If I've learned anything it's that everyone is different and nothing works all the time. That being said...whole grains are not all that healthy. (Read Wheat Belly) Also many j-pouchers are also celiacs unbeknownst to them and have a hard time processing grains anyway. I have found that juicing is a good way to get vitamins since raw foods are not good for the pouch. Whenever I eat a salad I suffer mightily I also have a lot of adhesions so my intestine has very tight areas where small seeds... [ more ]
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J-Pouch ForumsGeneral Discussion
Rash? Infection? Butt Burn?
HemingwayHemingway
CTBarrister Fluconazole should knock out that yeast infection in a week or two. Too bad you let it go that long. If you go to a dermatologist they scrape skin samples off, look under a microscope and can tell you in 30 seconds if that is what it is. Keep the area dry and I would suggest using Zeabsorb-AF powder on the butt crack at bedtime. [ more ]
Hemingway DING!DING!DING! - You were right skn69. Doc has me on Fluconazole. Only been on it a few days and everything is MUCHO GRANDE' better! [ more ]
skn69 Yeast? Could very well be a fungal infection in which case an antifungal will kill it...as my dad said 'sunshine is the best cure' so keep the area dry at all times (I know that is rather hard considering where it is)...but try using a blow dryer on the area at least twice a day, in the morning after your shower and at night before bedtime (on low please!) and try gold bond or any other athlete's foot powder...it really helps keep it moisture free and dry. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Cystitis?
skn69skn69
beckysmom Sorry to hear about this Sharon. Hope you are feeling better soon. [ more ]
skn69 Thanks NancyAnn, Just got back from my Gyn...cystitis, undertermined UTI (am awaiting the results of the urinalysis), swollen glands, otitis, throat infection and the begining of bronchitis. I seem to have won the lottery on this one! I suspect that it is all a stress reaction to the bad news and my mind is trying to glue me to a sofa...2 types of antibiotics, creams, drops, sprays and goodness knows what else on the script...She doesn't want me flying out for a few days so I am stuck until... [ more ]
n/a Sharon, you could look into D-Mannose - it's a kind of sugar that supposedly prevents certain kinds of bacteria from sticking to the walls of the urinary tract and causing infection. I've used it in the past successfully, as has my elderly MIL. I get it on-line (various sources). I also take a cranberry extract capsule daily for preventive purposes. [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Prostate exam
dewdew
Roy Prostrate exams can be a chore. Because I have some scaring in that area, when the Dr. trys to do a digital exam its been hard to acually feel the prostrate. It was decided that I would need a Prostate biopsy due to elevated PSA. It's fairly simple and was done as out-patient. There is some pain. The surgeon must pearce the pouch wall and then take samples from the prostrate (24 samples) If the urologist has questions he should consult with your 'Pouch' Dr. I would start with a PSA test... [ more ]
sjb Granted, I've never been through an exam, but my husband just recently had the prostate issue come up. The PSA is just bloodwork, so no problem there. GP sent DH to local urologist after psa level up, and this Dr. would not do exam--sent him back to major hospital where JPouch surgeon is. They did do a digital exam (with some discomfort). A biopsy is different with a jpouch, so when it comes to that the Urologist at MUSC will do it. Very conservative approach to prostate cancer these days as... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Fissure
V vstRN
Lou_Lou I'm sorry to hear u have a fistula they can be nasty little buggers! I have a tiny one which I developed back in April this year but it doesn't cause me much trouble or pain like what your describing. Unfortunately they dont heal without some sort of surgical intervention or in some cases for Crohns patients medications. Stay strong, hope you start to feel better soon [ more ]
Kline84 I think I have a fissure also but not certain. I have been using preparation h with pain relief. It has glycerine in it and also provides a layer of protection during BMs. It has helped a lot with the pain. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
New normal?
V vstRN
Chuckus What your going thru is pretty "normal". I know I went thru it when I was adjusting to my new plumbing and again after my most recent surgery of a Highly Modified Whipple Procedure and the complications and such after that. In time, you will "adjust" or "compensate" one way or another and please don't be afraid to talk about what's going thru your mind. I think if anyone said they didn't experience a little "depression" or "grieving" or "hard time" with all of what we've all been thru in our... [ more ]
vstRN Thank you all so much for your kind words and support. Sharon - You are so sweet. Your response put tears in my eyes. Just validating that this is normal is just what I needed. I have 2 young kids and was back caring for them full time since day 4 post surgery. I haven't had much time to really process anything yet. Marianne - Such words of hope! Awesome to hear about your sister Epic - lol. I think I'll be taking the more gentle route but do love your approach. Ke353 - I know, it's crazy... [ more ]
ke353 Honestly, the pain, frequency, urgency, and bleeding of UC was starting to become normal to me, so I think we can adjust to anything. It also took a while for the mourning to catch up to me. I didn't really think twice about losing my colon at first, but months later it hit me. Don't be discouraged about that. I'm feeling better with time. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
when to cut back on VSL DS?
J Jason4
vanessavy Jason were you actually diagnosed with pouchitis. I ask since you have FAP. I have FAP and swore I had pouchitis but I had a bacteria overgrowth that kept reoccuring. Most likely tied into dairy. [ more ]
jeane Jason, Coming from someone who has been dealing with chronic pouchitis for over a year and on long term antibiotics for it, it is worth every penny to keep the pouchitis monster at bay. I also take VSL3DS ( 3 times a day) and that is my GI's recommendation. It really does help me also, but not enough to get off antibiotics entirely. Although I know the cost is high for the VSL3, to me this is much easier to deal with than the pain and discomfort of pouchitis. [ more ]
See all 2 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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