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J-Pouch ForumsK-Pouch Korner
Stoma/intestine swelling?
EricEric
Jasmine 2 When you have your catheter left in...be careful. I wouldn't go bike riding or anything stenuous, you are trying to rest the area. You don't want to irritate or do any damage in the valve or pouch. [ more ]
Jasmine 2 Eric, I use a strip of guaze and wrap it around my hips and tape it in about 3 areas on my hips to keep it level with the stoma. Then I tie the guaze to the catheter, I bend the catheter so the end is held in place by the gauze...in a U shape. I use a golf tee or dowel to block the end of the catheter so it doesn't leak, and can be removed to empty my pouch. I have no trouble keeping the catheter in this way. Your valve being closed tight and harder to get the catheter in later in the day,... [ more ]
vanessavy Welcome to my daily hell as I call it. Your story is me every time I intubate. Tight stoma, my valve is on an angle. To keep the tube in it is simple. You have to form a loop like a ribbon, think cancer ribbon, the loop goes under the tube and then the ends go over and secure to the skin that prevents it being forced out. then secure another piece of tape over it. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sore rectum
FM Former Member
Former Member Sorry I haven't replied lately, I just started a new semester and I have been crazy busy. I haven't seen a doctor yet because as an international student I have limited amount of time I can miss class or I risk losing my status in the country. I have been trying to get an appointment after class but they close at 5PM. I have only had one really bad day, the rest moderate, but the last day or two it's been more or less normal, but I know from experience that it doesn't mean the inflammation,... [ more ]
vanessavy Cipro works ok for me but I take a stronger one that is the best called Omnicef, not sure what the generic name is. I love this antibiotic and it is a favorite at the BCIR program ostomy nurses. I don't get pouchitis, I get small intestine bacteria overgrowth that re occurs [ more ]
JJA My most common pouchitis symptoms are rectal pressure, increased urgency, and nighttime leaks/accidents. If the rectal area is bleeding, and feels more inflamed/painful vs just rectal pressure, I'd consider possible cuffitis. [ 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 ForumsHelp! Need advice now!
Hello
HAPHAP
vanessavy I would talk to your doctor and get off that antibiotic asap. Tingling is a sign of Nueropathy and that is really bad to develop. How often are you rotating your antibiotics and what one are you on now? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Contact Sports with a J-Pouch?
FM Former Member
vanessavy I rolled for the first time in BJJ and I have a BCIR with a stoma. I was good, just had soreness on my hips but I think that is from another surgery so the guard was painful but I think that will pass. Other than that I Olympic weightlift, crossfit and do Muay Thai. [ more ]
Former Member Thank you, "Worried Mom"... so glad your daughter is doing well! Gives me hope! [ more ]
CTBarrister I am not sure exactly what the concern is that underlies this thread. Football players and hockey players have had their spleens ruptured during games. I would think a ruptured spleen could happen with any contact sport and I am not sure why that would be less of a concern than an injury to a J Pouch. This is not to mention injuries to other parts of the body which could occur and necessitate surgery like ACL tears in the knees, rotator cuff tears in the shoulder, etc. Regarding girls... [ more ]
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J-Pouch ForumsHelp! Need advice now!
UC & Thyroid Disease?
B BethT
hever Cassiecass, yes there are eye problems associated with UC, about a year ago one of my eyes went quite red, and ached, I have glaucoma, compliments of the maternal side(UC compliments of the paternal side)anyway, went to my eye specialist, he asked me if I had any autoimmute diseases, I said UC, tho I have a J pouch so not really got UC anymore, he said, yes its still in your body and 'episclerosis'is caused by it, 'sclerosis'being more serious. If you try to find posts by a man called Dave... [ more ]
SteveRM I am about 8 weeks out and still having joint problems. I do hope they subside. I may try this new stuff that Fred Couples (the golfer) is using called Anabloc. It has some kind of tobacco incrediants in it (does not cause cancer). I think there is high correlation between smoking and UC. I quite smoking about 5 years ago and that is when my UC started. [ more ]
Spooky Yes, I definitely agree with Sue. At this stage post takedown, you are still recovering. You are not automatically "cured." It can take time. I definitely had very low energy after my colectomy, which lasted a number of months. I'm not sure how sick you were before your surgery, but I was quite ill and malnourished. After surgery, I experienced a number of symptoms including hair loss, at times debilitating fatigue, reduced appetite, depression/anxiety, frequently feeling cold, poor exercise... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
8dp5dt
MsSterlMsSterl
Kate1026 I can't imagine how hard this must be. You are in my prayers. Please keep us updated. [ more ]
JillM It's a heart wrenching process for sure. I'll keep my fingers crossed that things turn around and you get good news. [ more ]
MsSterl Thanks JillM Just so hard cause this is our only and last chance. The doctor told me that due to my age (42)he would only do one IVF cycle. And I really don't know if I could do it again anyway. [ more ]
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J-Pouch ForumsK-Pouch Korner
Emptying
K ke353
vanessavy When I eat salads I usually have diced up ham or chicken, blue cheese, romaine lettuce, sometimes peeled cucumber, pees and tomato. I usually have some cold pasta in it as well since pasta turns into pure liquid for me. I pull the skins off of everything, it is just to much of a pain to deal with. Only thing is with salads I make sure the leafy parts are diced up or shredded, that way if I eat to fast and don't chew it all the way it still comes out good. I make most of my salads in my... [ more ]
ke353 I can already see how veggie burgers can be an issue and I gave up peels and mushrooms when I got my ostomy and it's no loss to me! I don't eat red meat and I've been trying to eat more fish too so this is all good news to me. As long as I can still eat salads I'm good. Thanks! [ more ]
skn69 Ke, The K pouch, like the J pouch takes time to grow and mature...in the begining you have to drain it ever 4 hrs and then slowly as it expands and grows you can push off the time until you reach about every 6-8 hrs except before or after a strenuous activity or bed when it is advised to empty before sleep or when you wake up...I have a different routine, my pouch is 33ys old and has had some trouble along the way so I intubate when I get up, before every meal and before bedtime, about 5-6xs... [ 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 ForumsOstomy & Skin
Long term temp loop ileostomy?
SB Sideshow Bob
liz11 fq.. just saying that the jpouch surgeries are complicated. And I believe that some doctors want to have a successful history of these on their record. Let's just say when I was in Bob's (the original poster) situation and I enquired with my first surgeon about remaining that way.. he pretty much laughed me out of the room and told me how ridiculous that would be and "why would an attractive young female want to spend her life with an ostomy". He continued on saying "jpouches are the gold... [ more ]
fq i think you should be ok with yearly checkups, i had my ostomy for a long time. liz11 - what do you mean the surgeon might be jpouch happy for his record books?? Isn't that unethical for a doctor to make you stay a certain way when you are happy and the surgical decision is ultimately yours? [ more ]
Sideshow Bob Interesting. Thanks for your good information! [ more ]
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J-Pouch ForumsHelp! Need advice now!
jan need to inquire about saccharomyces boulardi
R Rebe0505
Spooky With probiotics in general, I also try not to get sucked into paying for a brand. What I look for are studies which prove how much actually survives stomach acid. Most of the higher quality probiotics will have that information listed, and they're not always even the most expensive. But it's amazing how many probiotics are on the market which don't even include that information one way or another, even brand names. So those are the ones I avoid. [ more ]
Jan Dollar So true. I do know that most of the studies that are done are on specific strains, so brands can matter. But, there just is not a lot of controlled research in regard to all the probiotics out there. I wish I could say that one strain of probiotic is as good or effective as another as long as it contains the same species, but I can't, because I just don't know. Plus, when you are dealing with C. diff, you want to be sure you are taking care of business! But, even C. diff has different... [ more ]
Rebe0505 jan thanks ..am going to check out jarrows after all..see ,check ss boulgari and c-dif.. sometimes you get what you pay for and sometimes you just pay for a brand..so worth..checking ut.. thanks again rebe [ 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 ]
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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 ]
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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 ]
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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 ]
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J-Pouch ForumsPouchitis
diet pouchitis-celiac/j-pouch?
pouchmonkeypouchmonkey
KellyK Thank you pouchmonkey and Jeane for your suggestions, I know that will help Here is the site for the Ginger Root where you can order pills http://www.swansonvitamins.com . It is very inexpensive and has good reviews, this is also what I have used. [ more ]
jeane Kelly, Cooked soups are a great alternative. I make them often loaded with veggies and potatoes, spinach, anything that you can throw in. This combination really agrees with my pouch. [ more ]
pouchmonkey Ginger root-what is the best form to try, tea, pills, etc? Brand recommendations? Kelly-lunchtime salads for me, not so much anymore. I eat a lot of baked potatoes, grilled chicken or bunless burgers. Udi's makes a pretty good tasting/textured bread. Amy's is a good brand for things like frozen pizzas or frozen lunches/lasagnas if you want a quick fix. Quinoa is good, & there is a Quinoa "breakfast" cereal that people eat like oatmeal-but I find it better with savory seasonings like a... [ more ]
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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 ]
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J-Pouch ForumsGeneral Discussion
Partial blockage
JP Jeff P.
Hope 777 I had problems with coconut candy which had shredded coconut in it. My surgeon told me that when coconut goes through the intestine in makes like a sticky ball and I should avoid it. Also I am very leery with nuts but have them once and a while but not a lot of them and try to chew them into tiny pieces. [ more ]
ke353 Black olives give me a little bit of pain sometimes, but I probably could chew better! [ more ]
Laurie K I agree with Sue. I was nervous my 1st year, avoided a lot of things, and I think it was just because the recovery for me was so long and uncomfortable. I blamed everything on blockages, but I think it was just the pouch slowly expanding, and me needing time. I'm 4 1/2 years out, and I eat EVERYTHING. Just know that I won't end up in the hospital after eating grapes and popcorn, or drinking lots of wine, but I will be on the can all night! You can eat it all..just chew, chew, chew, drink and... [ more ]
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J-Pouch ForumsGeneral Discussion
6 months out
Holly MHolly M
Ro so good to hear that others that are in my "class" are doing well also! [ more ]
Laurie49 Hi Holly! It's great to hear that you are feeling better and obviously don't agree with mindset of having to go through "misery day after day". Glad to hear things are looking up! [ more ]
georgiegirl hi Holly I am also 4 months from takedown and doing great - I'm so glad you others are too! [ more ]
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J-Pouch ForumsGeneral Discussion
4 weeks after j-pouch creation???
G Guest
n/a Oh yea - I remember how terribly lousy I felt after my 2nd (out of 3) surgeries as well. And I remember being unable to stand up straight for weeks. However, you will start having better days before too long. In the meanwhile, keep hydrating. Keep resting. And when it's possible, take short walks, even if it's just to the mailbox and back. Hang in there, keep posting and let us know how you're doing -- [ more ]
Laurie49 Chasingtime -- you are so new to this process. Although I know it feels like forever...you have a way to go in terms of healing and feeling better. Your body has been through hell. Again, you may be adjusting to a new normal, but it will be a better one that what you suffered with before. I've had my pouch since 1996 and it took quite a bit of time to adjust -- but, it's all been worth it. On a scale of 1 to 10, I am at a definite 10,99% of the time. Good luck and keep coming here with... [ more ]
Laurie49 Dgo Day please explain why you are here -- again? You have stated, ad nauseum, all over the internet how this place is 'worse than hell' and that the veterans here are 'worse than the devil himself', and that all we do is "lie". You're right, this is America and a great deal of us feel beyond blessed to have had access to this surgery because it saved our lives! You are certainly not the only person who doesn't like their j-pouch, however -- you are the ONLY one who has been banned over and... [ more ]
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J-Pouch ForumsGeneral Discussion
Depression - I feel the need to talk about this
JenniferGJenniferG
TE Marie Roberta, I hope you can get back into your yoga soon. I have horrible foot problems that range from pain to numbness and hot to freezing. I've been to 5 doctors and through all the testing including and MRI or my right foot the consensus is the foot doctor says it's caused by fibromyalgia and the rheumy says it's not caused by fibro. I can't do the poses anymore. I should get my CD out and try to do the poses that I can that do not involve my feet but that doesn't leave me too many. When my... [ more ]
RLC Thank you toughenough for the words of encouragement. You are right, I have made baby steps to getting better. Still not fast enough for me. When you have no control over your future anymore, it is difficult to grasp. As far as meds for anxiety/depression I am against them for myself. However, if someone needs them then by all means make sure you have a great doctor. I have learned through yoga and life's experiences on how to deal. The only thing I am having trouble with is dealing w/pain. [ more ]
Linda2 Jennifer I am sorry to hear that you went through so much without support from family. It is hard for others to understand and I found that in my family as well. The labelling is the worst! We are people first and not a label! Yes, you are right that Medical Professionals seem to just keep adding the labels instead of taking the time to listen to their patients without judging then trying to fix us based on their misconceptions. I had trouble getting a Medical Professional to recognize I had... [ more ]
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J-Pouch ForumsGeneral Discussion
depression and anxiety help needed. thank you
G Guest
Guest i have my second appt with an amazing psychologist tomorrow. he has been through 2 bouts of cancer and deals with incontenance and is so uplifting. thank you for all your suggestions. i believe getting the bag off will do wonders as it weighs very heavy on my mind. especially the loop... [ more ]
Spooky Yes, I definitely echo what Marianne said. My mood improved considerably as I began to feel physically better and was able to start doing things I had done before I got sick. Basically, my mood "healed" as my body did. But I understand needing to get over the hump. The adjustment period is tough and I truly believe that our minds have to heal along with our bodies. Have you considered therapy? It might be worthwhile to speak to a therapist who has experience dealing with chronic illness. If... [ more ]
Guest im like you. i really do not want drugs in me if i can help it and if it affects my pouch like it seemed to trial and error is out. im trying to use my mind and family to help but were not in our home state and feel isolated. my mom n dad came to keep me company til my wife can be home every day. were moving home approx 3 weeks after takedown. florida to ny and im concerned about flying with new j-pouch (accidents etc) but i need so bad to be there ill wear a diaper if necessary... [ more ]
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J-Pouch ForumsGeneral Discussion
Burn, fissure, or hemorrhoids?
Kline84Kline84
TE Marie I don't know but think I've read people talking about the same thing and it was fissures. Did you know you can do a search on here to find past posts on a subject you are researching. I find it very helpful in the wee hours of the morning. Go to the top left hand side of the tool bar and select the magnifying glass with the "find". You can then put in the words you are looking for. I'm glad you are getting relief from the prep H so you can at least sleep some. If you find out what was... [ more ]
Kline84 Thanks for the replays! Well the burning pretty much went away with the use of preparation H and bland thickening foods like bananas so maybe something I ate had a little more pepper in in than usual. Still having the uncomfortable irritated but not painful feeling every now and then. Seems like it happens when it's really hot out and I'm sweating a lot. Other than that the preparation h makes everything pretty comfortable. Thinking I may have a fissure though cause some of the bowel... [ more ]
notsotough I had a very similar set of symptoms- the throbbing type pain. It also improved on sitting or lying very still. Eventually a stricture was diagnosed and after dilatation I really felt much more comfortable. I still had pouchitis but the discomfort was very different and never throbbed. The first examining doctor said it felt fine but the second said it was tight and crucially the examiantion provoked the same type of pain - examination is obviously never particularly comfortable but think... [ more ]
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J-Pouch ForumsGeneral Discussion
Holy Shart!
BD Blake D.
Blake D. Thanks guys for the advice. I ate half a bowl of tomato soup, a can of tuna (yuck), a little bit of a chicken breast, and a Greek yogurt today. I did not have many problems. Still have gas pains and sharts, but decreasing in frequency thank God! Don't want to ruin all my underwear. [ more ]
liz11 might want to avoid so much sugar as sometimes causes lots of gas/bloating - like the pudding cups. for protein - scrambled eggs, greek yogurt, plain white cooked chicken, cheese, peanut butter [ more ]
mgmt10 I couldn't eat tomato sauce for a couple of months...maybe longer. It killed me. I'm fine with it now. You really have to take it easy with food right now. I know it's tough when you're hungry but otherwise you will pay dearly as you just found out! Hang in there...it gets better. [ more ]
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J-Pouch ForumsGeneral Discussion
what would you do? another surgeon for takedown?
G Guest
vstRN I would definitely switch surgeons and move. Although takedown is the easiest of surgeries, it (at least for me) can be very emotionally taxing. Family support would be a huge advantage during this time. Good luck with your decision! [ more ]
JWMIII Hi Chasingtime...I agree with Suebear that if you want another surgeon, ask the Cleveland Clinic in Florida to provide a recommendation. They have a good network of colorectal surgeons who were either Cleveland Clinic or Mayo Clinic trained. I am from Philadelphia but had to go to the Cleveland Clinic in Florida (Dr. Wexner or as the nurses call him...God) for my colectomy, J-Pouch and takedown. They had recommendations for me at Temple and UPenn here in Philly for any emergency follow-ups,... [ more ]
Guest i think i can from my surgeon. only downfall is wearing this bag a few more months. either way im in a pickle. thank you guys so much... [ more ]
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J-Pouch ForumsK-Pouch Korner
back to work
Rosie128Rosie128
vanessavy I heard a man in the men's bathroom next door to the last job I did recently. Sounded like his colon exploded. I never sound like that. I think we think we are loud but man , I forgot how loud colons are! [ more ]
dpol Teaching is a great and very important profession! Remember people without pouches make noise and can be very fragant in the restroom. Enjoy your wonderful job! [ more ]
skn69 Good luck Rosie, Congratulation on going back! Have fun with the kiddies! Sharon [ more ]
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J-Pouch ForumsK-Pouch Korner
Arthritis?
B Bodoni
Jasmine 2 I didn't take predisone, and I still have UC arthritis. [ more ]
Bodoni I too have lots of joint pain. My doc thinks it's due to all the pred I took years ago. [ more ]
jeane Yes...I have severe osteoarthritis for years of taking pred at high doses for long periods of time. I am 49 and ache all the time. It is very frustrating. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hemroids?
BE Brian E.
Brian E. Thanks so much! I will hook those things up. Greatly appreciated! Take care. [ more ]
Jpouch8888 Hey Brian, If I were in your shoes, I would start using Charmin Wet Wipes instead of TP. I assume the hotel TP is not very soft. Also, take hot baths and very gently massage the area that is bothering you, if tolerable. Whenever I have Butt Burn this helps, so hopefully it could help with your hemorrhoids. Also, I would take a little bit of laxative (milk of magnesia) so things come out liquidy for easier passing. You may also want to go on clear liquids for a day so your bowel movements... [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Naltrexone?
pouchmonkeypouchmonkey
jeane Pouchmonkey, I am very interested in this and if you do start the low dose, please report back your findings. I would much prefer to take a low dose of this med than 875 mg X 2 of augmentin daily like I have been on for the last 15 months non-stop. I will ask my GI about this at my next appointment. [ more ]
pouchmonkey My chiro recommended it specifically because he has other pt's who have used it for auto-immune issues & have done extremely well with it. I have read the online info that notes that it is used for opioid addiction, but that's at 50mg, not the 4.5 mg dose. The pt's he has that have been using it have MS, UC, & Crohn's. My GI (who I have not spoken with yet about LDN, I wanted to finish out my cycle of Flagyl & Canasa first) pretty well told me that pouchitis, or mine specifically... [ more ]
tatunbaba Nice thread. Looked for Naltrexone and yeah it a drug to treat opeoid drug addicts. LND or low dose Naltrexone is being tried in variety of deases. Check the link http://www.lowdosenaltrexone.org/ But I see they used it for Crohn's. 1.75 to 4.5mg/day (abt 50mg/day is for heroin dependence therapey) What About effect on UC? Anyone? [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
where to get florastor
R Rebe0505
Rebe0505 yes i do..thats what you get for writing to late at night..costco is what i am talking about for florastor two bottles for 58 99.thus one bottle 29 dollars each.. [ more ]
suebear Do you mean Costco? Sue [ more ]
Rebe0505 woops correction or clarification... the 58.99at cosco is two bottles for that amount thus each about 29 dollars each bottle i said it wrong in last e-mail..after ordering just the florastor for a year you easily make back the 55 dollar embership..besides getting other great buys at cosco.. who knew??everyone has been telling me about cosco..took me a while to get it!!! [ more ]
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J-Pouch ForumsGeneral Discussion
Have you ever wondered what the hot topics colorectal surgeons like to discuss?
S Subzeromambo
TE Marie I've read and saved many articles and had not come across this one. Thanks for posting it. [ more ]
Subzeromambo The study was based on people being treated for anxiety and/or depression before surgery but I still think your point is valid. Fighting pain tires the immune system and opens us up to more problems. Had a bizarre blockage on Monday and I had not even had anything to eat. Blockage has passed but the pain is still there. I am trying not to be down but it is hard. [ more ]
skn69 There have been similar studies on pain...anxious or depressed people complain more of chronic post op or post surgical pain...which leads me to believe that pain causes depression and anxiety and so does pouchitis! Sharon [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
post surgical depression anxiety
G Guest
Guest thank you guys so much. i will definitely walk because i dont like being inside to much. makes me feel trapped. the loop ileo is making me feel trapped as well. way worst than the end ileo. the bladder and butt side effects came on day 2 of celexa so i dont think ill need to wean but thanks for the advice. i agree and also do not like or feel good on meds. its been that way forever... [ more ]
TE Marie Please call your doctor or pharmicist about how to wean off of it. I've tried antidepressants before that gave me side effects too. If you want to try something else there are many others out there. Maybe once you quit taking it you will decide you don't need anything. [ more ]
skn69 Chasingtime, The only non-medicinal remedy that I have ever found that helped me (I don't, personally, like meds and don't like what I feel like on them) so I use exercise to control my moods and feelings post op..since I can't run anymore (never really could) I walk miles with an MP3 full of music that I have collected and that makes me feel good...I walk about an hour a day, most days, and it does wonders, I feel stronger, more at peace and it tires me out sufficiently to help me sleep... [ 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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