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J-Pouch ForumsHelp! Need advice now!
Metamucil gas bloated
U UjohnjC
Jan Dollar I had terrible gas with Metamucil (psyllium). Citrucel (methylcellulose) was fine. But, I don't take any fiber supplements anymore. I just use Imodium. Jan [ more ]
rachelraven I never needed it, but remember them saying use Citrucel if necessary as it was supposedly less bothersome. No personal experience, but agree, try Citrucel. [ more ]
CeeeeCeeee My colorectal surgeon suggested I take Citrucel instead of Metamucil. It is wonderful! No gas!~ I really tolerated Metamucil quite well but I like Citrucel even better. Best wishes! [ more ]
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J-Pouch ForumsGeneral Discussion
anti biotics
Paul HPaul H
Eitan Hello Did you try to find Vivomixx? Vimomixx= VSL#3. I think it is avalable in Italy. [ more ]
Paul H Thanks Scott, I'm thinking SIBO only because my symptoms are mild, there is no fever, aches, sickness, just increased gas, urgency & diarhoea which I contain with Immodium & Plantago rotation. I'm probably being a bit impatient, a year is still not that long. My BMs were 8-10 before ABs, 6-8 after but then they creep up. Maybe I just need to more careful with diet, it's just so frustrating having been ill for so long you just want to be more normal. Patience is the key I guess. [ more ]
Scott F I'd advise against a three-day course, even though the side effects are uncomfortable. Perhaps a *longer* course will keep the symptoms from returning so quickly. Also, you might consider VSL #3 to keep the pouchitis from returning - it worked for me for a few years. Maybe you'd tolerate Flagyl better than Cipro or Xifaxan? Why are you thinking SIBO? Pouchitis returning immediately after stopping antibiotics seems to me more suggestive of antibiotiic-dependent pouchitis than SIBO. [ more ]
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J-Pouch ForumsGeneral Discussion
plastic surgery from all stomach surgeries ??
PouchomarxPouchomarx
Jeffsmom You go boy! Be proud of how far you have come in this terrible journey and how much you have endured. I look at my scars as my story. I've had 22 major surgeries, but nothing as bad as all of this. I'd take 20 more open heart surgeries before I'd go through all of what you and Ll the others have endured. But my scars are me, who I am. Just keep this in mind, when Jeffrey has a liver transplant, his scar will begin where mine ends and to all around his abdomen! It can always be worse, haha. [ more ]
Pouchomarx Its not horrible, so not a big deal. I havent had my shirt off in public in a long time. Never with this ileostomy. Hoping my pouch redo/revision by Remzi in October will put me one step closer to walking that nude beach again.. [ more ]
Jeffsmom Poucho, one of my surgeons told me this. Don't go in the sun for the first year. Keep it covered. I had open heart six years ago, and being female and in the sun and at the beach all the time, I didn't want a huge ugly scar. Trying to keep my chest covered was really a funny thing. My husband told me I looked like my grandmother, an old Italian with w washcloth covering my scar. It was quite a sight. The other thing, vit E oil or Bio Oil. It can keep the scar soft. You won't be able to have... [ more ]
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J-Pouch ForumsGeneral Discussion
Adhesions
KelseyHey2308KelseyHey2308
AllyKat Patti thank you for your reply. Im 5 weeks behind you. I am so totally pushing myself. I too am so sick of this. At least your cancer free and still have your pouch. Also, I went into this surgery not well too. I can't take sitting around any more but then the fatigue takes over. I guess at 2.5 weeks this is still normal? No one understands. My husband tells me he is tired and. I Try and explain its not the same tiredness. Susan [ more ]
AllyKat Sharon, 2 weeks, omg you r a wonder women! [ more ]
skn69 Hi Patti, Nice to hear that it is all over (for now and forever hopefully)... Yes, us pouchers hide a lot of crap in our abdomens...it is kind of like cracker jack...you never know what you are going to get and then you always have a new surprise inside! I had my pouch picked up (kpouch slid off of the wall a few years back and was crushing some rather unhappy organs)..while in there he snipped a few new adhesions, fixed another rip in the abdominal wall and dug out a loop of bowel that had... [ more ]
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J-Pouch ForumsGeneral Discussion
Weight gain :/ and how to lose it?
J JessGoguen
skn69 I believe that you need both 'exercise' and 'activity' along with 'intake' control to lose or gain weight. For me activity is the stuff that you do every day like walking to the store, climbing the stairs instead of taking the elevator (or just deciding to carry the stuff upstairs in 3 runs instead of 1), gardening, shoveling snow etc. Exercise is intentional high intensity activity that you work up a sweat (even mild) doing. Aerobic activity like walking, running, biking, skating, swimming... [ more ]
LoraCH I have gained so much weight since my surgery 10 years ago, it is not even funny. I am at the highest weight I have ever been. I work out though my food choices aren't always the best, but I do not over eat. I can't seem to loose and keep gaining .... UGH! [ more ]
rachelraven My 40's has made weight loss harder. Not that I'm "overweight," but I'm at my highest weight. Used to be easy to rely on exercise to drop 5 lbs; no more! I'm exercising a lot, and the number isn't budging. I'm a decent foodie, but do have a few indulgences, though my diet has changed very little. I blame my age these days. [ more ]
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J-Pouch ForumsGeneral Discussion
Entocort
F Fosty
JJA I doubt the amount of Entocort Im taking now is even having an effect (1 pill every 3 days), but I wanted a really slow wean to be sure I could get off. I agree, that for me the Entocort was pretty much just s bs said, not a solution. I only got off when I started the Immurdn which actually has been treating the underlying cause. I had a really rough 2 years and thought for sure surgery was in my future, but this Immuran is doing the trick for me now, and if/when this stops working I plan to... [ more ]
Fosty Thanks hope it continues. Don't really want to remove pouch but it's been challenging this past year so it seemed like the best option. So you're not off Entocort completely yet? I how when you are symptoms don't return. Everything seems like a bandaid effect to me. Feeling that surgery will always be the end result. Ugh [ more ]
JJA I never felt jittery. I was on it for pouchitis that stopped responding to antibiotics alone. I also have a damaged sphincter due to a fistula surgery, so I also take a lot of fiber/Imodium to thicken my stool up to facilitate continence, and a symptom of my pouchitis is runny stools, so yes, Enticort definitely helped firm up my stools, but for me that was a good thing-I always assumed it was because it was treating the pouchitis rather than a side odbthe med, but I guess I never gave it... [ more ]
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J-Pouch ForumsGeneral Discussion
2nd surgery and stairs
NS Nora S.
Fight like a girl Depending on pain tolerance for yourself also. I did minimum stair climbing at first just because I wasn't sure how I would feel, but when I did, I actually did it "Toddler Style" by sitting on my bum going up not down...going down wasn't difficult but coming ups was better to take each step on my bum. Silly to some...but worked for me!!! [ more ]
Jaypea If you can do stairs now (pre-op) there should be no reason you can't do them post-op. Keep in mind that you might have to move quickly to the bathroom so convenience will be your only worry. [ more ]
shawne h May be best to plan on having your bed and bathroom on the same floor for the first couple of weeks. As for stairs it all depends on how soon you recover and when your last pain med was taken, you will just have to wait and try things out for sure you will not be able to climb at the rate you use to but just take it slow and you will be fine. [ more ]
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J-Pouch ForumsK-Pouch Korner
New to the K Pouch Korner
A AussieRoo
AussieRoo Thanks for the replies and suggestions. My surgeon is Dr Allison. SKN69, I will certainly pass your suggestions on to my surgeon, it's all food for thought. Thank You, Carolyne [ more ]
skn69 HI Carolyne I am so sorry that your k pouch is not cooperating and seems to be giving you constant trouble. Not all leakage means valve slippage...there are 2 other causes that come to mind immediately and are not often considered...both may have an easier fix than a valve re-do which is a full blown surgery. 1. a peri-stomal hernia. That means that there is a weakness in the muscle that holds the valve in place so that it twists and pops open or gets strangled (very painful around the... [ more ]
bcirray It's got to be the valve again. This again can be fixed. Get to your surgeon. Ray [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pressure
N New_Life
thumprhare I had pressure from pelvic floor dysfunction then later from spasms of some sort -- pelvic floor PT helped. Following takedown -- Levsin helped. I guess you need to r/o badness first (pouchitis and the like). [ more ]
CeeeeCeeee I think the pressure to which you are referring is anal pressure. The only times I experience unusual amounts/duration of anal pressure is when I have pouchitis. Once the pouchitis is eliminated, the anal pressure is gone. So, my suggestion is to have things checked out by your physician. Best wishes! [ more ]
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J-Pouch ForumsGeneral Discussion
Need help lost
Uc-DanielleUc-Danielle
rachelraven Sorry for your problems. I made it 21 years before I had some issues. I never expected any of the things that cropped up for me to come up. It isn't the path I *like* but I have to deal with it. Some days I do allow myself a breakdown, but mostly I plug along. I'm an ICU nurse, and I see people who are suffering WAY worse than myself every work day, so it brings me a perspective I would never otherwise have. Believe me, things could ALWAYS be worse... But as Dory says in "Finding Nemo" -... [ more ]
Fosty Sorry to hear you're suffering. I too have been having cronic problems this past year after 11 yrs. of J pouch. Will be looking at permanent Illeo in the new year. In the meantime I'm on Entocort as antibiotics did not help. So far I'm feeling better and not much side effects like prednisone. Probably not a permanent fix but helping for now. Hope you're feeling better soon whatever the treatment will be better then feeling sick at the time. [ more ]
Jan Dollar I am sorry this happened to you. This may seem harsh, but it is OK to not want to take medication. What is not OK is to deny the fact you have a disease that needs to be treated. You have to accept it and move on. If you were diagnosed with diabetes, you would do what was necessary to control it, including medications, correct? Why should IBD be different? It is normal to be disappointed and mourn the loss of the health you were counting on. Have a pity party, then start over to work for a... [ more ]
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J-Pouch ForumsPouchitis
Going on Cipro tomorrow - best advice?
PouchyTXPouchyTX
Ape Lineman I have battled pouchitis and incontinence for years now and finally found these amazing natural oils and supplements. They take about a month to see results. I've been taking for about 4 months and symptoms are almost gone. I was doubtful at first but they work. dōTerra- micro plex MVp, alpha CRS+, xEOmega, digestZen terrazyme, digestZen oil Hope this helps. Good luck [ more ]
Scott F I eat Greek yogurt every day, but I have low expectations for it as a probiotic. In addition to the relatively small dose of beneficial bacteria, the bacterial strains in yougurt don't generally survive well in the GI tract. Probiotic supplements are usually made with bacteria that can make the trip successfully through the stomach and small intestine. Some of the studies of probiotic use for J-pouches suggest that high doses (numbers of bacteria) are important. I've noticed that when I... [ more ]
Jan Dollar Other brands that some people like (in no particular order): Culturelle, Align, PB-8, and Florastor. Some people also swear by eating yogurt daily, but there have been no studies actually showing there is enough probiotic bacteria to colonize. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
What's worse?
JeffsmomJeffsmom
Jeffsmom Jan thank you. I was hoping the fistulia would be worse but i dont know if it is still there or healed. There is an abscess present and i think that is where the sinus was? Dont remember. Ill have to look at the report again. I wish there was an wasy fix for jeff. We meet with the surgeon on the 10th so im sure we will get more bad news. I feel like the hits just keep coming with no end in site. I guess the good news is the PSC is not acting up. Thanks again. [ more ]
Jan Dollar I don't think one is worse than another, except perhaps a sinus might be worse because debris can get trapped in the blind end and the abscess can reform over and over again. With a fistula, it is more of an annoyance, unless it connects with the bladder or other organ that is susceptible to infection. If Jeff does not have enough small bowel for a redo, and pouch salvage is not possible, then permanent ileostomy is the next best option. I wish I had something more inspirational for you, but... [ more ]
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J-Pouch ForumsGeneral Discussion
Redo Jpouch surgery at CC July 12
M marius26
Fight like a girl Prayers...has there been an update? [ more ]
Pouchomarx is there an update on our friend?? [ more ]
Jan Dollar Appreciate the update Sean. Sorry you are still in somewhat of a limbo situation, but one day at a time, eh? With all the collective energy of everyone here and your supportive family and network of medical practitioners all your bases are covered. It sounds like you have a good plan for now. Best wishes for you and your family, Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Whose had 2? (J pouches)....
M maryanne
Toddi1973 Hi Maryanne, i had two j-pouch surgeries/revisions. the first was done in 2012 by a good surgeon but not a GI specialist that does nothing but colorectal surgeries. Went very well.... However, that surgeon left me with 8cm of colon before the 'exit'. So early 2014 during a pouchoscopy they found new polyps and dysplasia in those 8cm. As I had gotten the initial pouch for a full colectomy after stage 2 colon cancer, all alarm bells went off. The recommendation from that surgeon -that I owe my... [ more ]
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J-Pouch ForumsGeneral Discussion
Flagyl
M Mark01
Scott F Some people get a dreadful reaction when they consume alcohol while taking Flagyl, so pharmacists advise everyone to avoid alcohol with Flagyl. It turns out that not everyone has this reaction, so you may want to carefully try it. I haven't worked myself up to trying it yet. [ more ]
Mark01 Thanks for the reply ive been taking them together and it's been fine. Also is it bad to drink alcohol with flagyl? [ more ]
Jan Dollar You can take them together (there is no drug interaction). But, Flagyl and other antibiotics tend to reduce the amount of stool, so can cause enough thickening that the effects of Imodium is too much. So just be wary of that and reduce the Imodium as needed. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch leakage??
CC Charlie cbnice@verizon.net
Pouchomarx i had on and off back pain for a few months, then started getting electrical zaps down my legs. One morning i woke up and couldnt get out of bed. drove my ass to ER and did CT scan and discovered i had a very small leak in tip of jpouch that was leaking into my spine and i had a spinal infection. immediate diversion that night and alot of antibiotics [ more ]
Jan Dollar Yes, that fever is significant and should be reported to your doctor. jan [ more ]
maattee66 I had take down with a temporary ileostomy July 9th. I'm experience some stomach pain and aching when I get that urgency in my bottom to let stuff out. Last night I had a fever for the first time. 101.6. Not sure if I should be concerned. I've been blogging since the very first surgery in March if you are interested. Www.lifetakesguts.com [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch and food
N newpouch
Scott F It's most important, IMO, to avoid overdoing it. Some people are sensitive to particular foods, but their sensitivities may not have much to do with you. Introduce foods slowly, in moderate quantities. If you find a food that gives you trouble, certainly back away from it, at least for a while. [ more ]
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J-Pouch ForumsGeneral Discussion
Any ideas of what it could be?
Mema 1Mema 1
Mema 1 Hi Iholdem, With me it doesn't seem to matter what I eat....personally I think that stress is the major factor in my case, although not to say that I don't have a finicky pouch, I know that I have had one all along. Just wish they could figure out what to do for me since I can't get a full night's sleep....was up 4 times during the night, and until I can empty my pouch fully, the gas just keeps on coming with little output. Going to see my GI today, and have the feeling that he will put me... [ more ]
lholdem Hi Mema, not to give you an over-simplified answer, but I had a great luck reducing my gas and discomfort by doing the FODMAPs elimination diet. I worked with my GI's dietitian and was able to identify which foods can really make me uncomfortable. I realize there's more that might be going on, but it might help some. Best wishes to you! [ more ]
Mema 1 Thanks goodness the doctor gave me samples of both the Xifaxan and the VSL....there's no way that I would be able to pay the $2,000 amount for a month for the drug. I'd be especially cursing if it didn't work and it hasn't. What a waste of money. I don't think I'm swallowing air in the middle of the night. That seems to be when it hits me quite often, so I don't if that's the cause, and I don't thing my increased sensitivity to the gas is waking me up either. Interesting, Jan, that you said... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Advancement
P PDS
PDS Thank you for your feedback. Trying to stay fit so I can bounce back sooner. [ more ]
aka KNKLHEAD Sounds like your situation is similar to mine. I am present at Cleveland Clinic recovering from my third takedown, but this time with Dr.Remzi. Regarding your question on a pouch redo, Dr. Remzi did mine after lots of prior complicatons and yes,about five surgeries, too! I just got rid of my third ileostomy! The redo was, frankly, very easy for me, and I'm grateful but not sure why. The surgery was about 4.5 hours long. My recovery was also very fast -- was ready to get back to office work... [ more ]
AllyKat My surgery was 5 hours. I was hard but I was able to keep my pouch till two weeks ago cause chronic pouchitis for 15 years did me in. Good luck. I miss my pouch so much. [ more ]
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J-Pouch ForumsPouchitis
My Pouchoscopy Results
CTBarristerCTBarrister
CTBarrister Rebecca, Thanks very much for your post. I did not post my scope pics, but I have a mental image of how they looked in past years as opposed to this year. I think the inflammation is much more pervasive and it was characterized as "active" Crohn's colitis in the GI's report, although the pathologist's conclusion was "inconclusive" on whether I am dealing with Crohn's or pouchitis, with is about the 5th different pathologist who has so concluded. As I have already posted, I don't care what it... [ more ]
Rebe0505 ct you have had some reports before that worried you a lot as i recall that sounded pretty scary ..my doctor has often told me the reports could sound or be worse than they are..with that said i would like you be alarmed too..we always feel like we are walking time bombs i know.. but its good to have another alternative if necessary and it sounds like you do...i think with all of us that have ongoing serious issues we just have to bounce around trying something till it stops working which... [ more ]
CTBarrister The rectal cuff did not show much inflammation until the last couple of years. But fortunately it's only characterized as "mild colitis." As we all know this is the most likely area for cancer to develop, if there is chronic inflammation. The finding of mild inflammation in the cuff, the one remaining piece of colonic tissue, and much worse inflammation in the ileal tissue, is one of the things which likely has my Doctor suspecting Crohn's and wanting to treat it as though it were Crohn's. [ more ]
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J-Pouch ForumsGeneral Discussion
What would you do?
MysticobraMysticobra
roseviolet Sometimes I find that gas blocks stuff from exiting. I tried doing a downward-dog pose (get down on all fours--head low--butt high) and I could hear the gas move up out of the way and then I could eliminate. As Rachelraven says, changing positions may help. [ more ]
Mysticobra Apples... Not applications.... Sorry... Don't know how to edit. [ more ]
Mysticobra I do exactly that! And almost all the time it helps. I eat a few pieces with every meal! At the end of the day I have had a whole apple. And you wouldn't believe how good some foods taste... At least for me... With a few pieces of applications. P and J sandwiches for one! [ more ]
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J-Pouch ForumsGeneral Discussion
15 weeks since Takedown. Getting worse
D DanielR
DanielR Thanks for all the responses on this. I'm from the UK originally and came to NY 8 years ago, so I'm still a bit English in the "don't make a fuss" and "stiff upper lip" sense. I realize that it's still relatively early days, so don't want to panic too early or anything, but I just get the feeling that with everything I'm taking, I should be seeing some sort of small improvement by now. If the metamucil and cipro don't work, I'll go for the scope. [ more ]
chiromancer If I was guessing and I am, I would guess you probably have several things going on. You should get scoped to see if it is pouchitis and or a mechanical issue such as a stricture, surgical issue or something else. It sounds like the surgeon had difficulties and these J pouches need to be constructed properly to work correctly. I would guess the radiation is a factor and the more or less direct connect to the anus, both of these can be problematic for good function. Not to discourage you but... [ more ]
Scott F Your diet may not matter much, but if it does it will need a lot more careful experimentation. The word "sensible" is misleading here - what matters it what seems to work best for you. Not everyone thrives on the fairly high level of carbohydrates you're eating. That's an awful lot of bowel slowers. Are you sure they're doing you any good? At that dose of opium + Lomotil you've more than maxed out that benefit, I think. In my early months I was encouraged to "stretch the pouch." This... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch and gastroparesis
H Hoping
Jeffsmom Originally Posted by Jeffsmom: Roseviolet, yes I am aware, however it was our pain management team and surgeon who suggested taking these two drugs together. My son was on a boatload of narcotics and we were trying to get him off of them. Taking this combo every now and then is safe to do. That said, I didn't know it could lead to pouchitis. I take a huge amount of Motrin for severe back and foot pain as well as sinus headaches. Thank God, I have not had any issues. many days I start my day... [ more ]
roseviolet Jeff'smom, Please be aware of the facts that Motrin and all similar NSAIDS can cause nasty pouchitis with or without bleeding. It can cause GI irritation and bleeding even in those with normal intestinal health. In addition, Tylenol is toxic to the liver. Taking both drugs together could be asking for additional problems. Maybe talk to your GI doctor about using these drugs. They are over-the-counter, but that doesn't mean they are safe. Rose [ more ]
Jeffsmom Have you tried 4 Motrin with 2 Tylenol ? The 4 Motrin is the prescription strength and can be taken with Tylenol. Tylenol works on brain receopters and Motrin works at the site of the pain. Jeffrey was taking it post op and helped a lot. [ more ]
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J-Pouch ForumsGeneral Discussion
pouch revision questions ??
PouchomarxPouchomarx
rachelraven I would imagine if he creates a brand new pouch, that *could* necessitate a new stoma (as that might shorten the distance from stoma to pouch or stretch it too much). But maybe not if there's enough to work with below it/they left ample small bowel from stoma down. You know? Just makes sense. [ more ]
AllyKat When I had my repair 15 years ago they left the original stoma. Don't know about a redo. Good luck with your surgery. [ more ]
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J-Pouch ForumsGeneral Discussion
diet/vitamins/supplements for new jpouch redo?
PouchomarxPouchomarx
skn69 No sure if this will help you but I found that Silicium and/or silica helped me a lot...I do a huge vit/mineral regime pre-op and at any time that I am feeling weakened or immuno compromised (catching all bugs or constanly week and tired)... I up my multi-vit, add calcium+D, vit B's, copper, zinc, chrome, mag etc... A good mineral supplement helps, lots of fresh fruits & veggies, fresh juices and soups and lean protiens...plus as much exercise as you can get to keep your body strong. No... [ more ]
Scott F I think the best thing you can do to prepare for surgery is exercise, daily if possible. In addition to the obvious benefits (lung capacity with aerobic training, fitness with strength training), a fit body just appears to deal with the stresses of surgery and recovery better. [ more ]
AllyKat Tumeric, fish oil, Vit D [ more ]
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J-Pouch ForumsGeneral Discussion
Cipro
F Fosty
Scott F Nausea and dysepsia are common Cipro side effects. I'd suggest taking it with food (but no dairy). For nighttime leakage, there have been lots of posts on things to try, and I'd recommend some (or all!) of them - just do a search. It's better to light a candle than curse the darkness. One Lomotil at bedtime is probably worth a try, as long as you're well hydrated. It will *slow things down*, which is exactly what you want at bedtime. In addition, here are some of the other things to try: No... [ more ]
Fosty Not much really. I have lomotil but didn't want to over thicken as it seems ok in that respect. I am feeling better then before but still a few symptoms that could possibly be related to Cipro ? [ more ]
Scott F It may continue to improve, though many people get prompt results. What else are you doing to get that nighttime activity under control? [ more ]
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J-Pouch ForumsGeneral Discussion
3rd and hopefully final TAKEDOWN Tuesday
aka KNKLHEADaka KNKLHEAD
Pouchomarx That was my mindset for the past several months. But after my consult with Remzi, he changed my mind. I know there is a 15% failure rate on pouch redos, but I hate my ostomy with a passion. Although I have not had any leaking or skin issues with it, It really brings down my self esteem and body image. I would only be comfortable with a permanent ostomy if i knew it was my only option. But if i can have another chance at a jpouch i will take it. My first one had issues from day 1 due to a... [ more ]
SolomonSeal Poucho: personally I would be too sick of dealing with that to try the jpouch again and getting it removed would give me more peace of mind and potentially less issues. Again, there are different perspectives on this and I know not everybody is OK with an ostomy. [ more ]
Pouchomarx yes i would need take down 3-4 months after the redo. My pouch has been disconnected for a year and a half due to leak. And now dealing with diversion pouchitis from it not being connected. I would probably need it removed at some point which is a huge surgery, so why not try a new pouch by the best surgeon if I'm going to have a huge surgery... [ more ]
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J-Pouch ForumsGeneral Discussion
IBD related arthritis: Is this common?
K_2004K_2004
JBW I was diagnosed with Ankylosing Spondylitis about 15 years ago after having UC for 20 odd years ( now have a pouch but every time I asked the consultant if they were linked they could never tell me for sure. My son has IBD and has also developed AS so there maybe is a link but don't think there has been any research to prove it. Luckily we have both responded very well to Humira which keeps the AS at bay. I know it's difficult but try to keep positive ~ good luck [ more ]
Jan Dollar Just like with IBD, the course can be variable. If your treatment is successful, you can remain very active. But, just like with IBD, there will be flares. I had signs of enteropathic arthritis, with assorted unexplained episodes of tendinopathy as early as my 20's, but the more disabling stuff was around 50. Jan [ more ]
K_2004 Jan...I'm only 29. As a bedside nurse, do you think this will effect me long term as far as my nursing career goes? [ more ]
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J-Pouch ForumsGeneral Discussion
Men rash
U UjohnjC
SolomonSeal Jan- I think you might be right about that. I certainly think that keeping it dry is critical CT-thanks for the tips. Unfortunately, I'm abroad so I would like to see if I can fix this without a doctor first. Looks like Zeasorb is a miconazole powder. Right now I am taking miconazole for oral thrush and it seems to have pretty much knocked that out. I will ask a pharmacist if I can get something similar to Zeasorb. Certainly better than the paste. UC has made me a masochist, so I decided to... [ more ]
Shainy probably just a case of jock itch. hydrocortisone will make it worse. as others have said use an anti fungal cream, apply a couple of times a day. can take a week to clear. don't stop using the cream for a few weeks as will come back.. [ more ]
CTBarrister By the way I mentioned seeing a dermatologist because it eliminates the guessing. A dermatologist will scrape sample of skin from the affected area, look under a microscope and tell you within 30 seconds whether it's a fungal infection as opposed to folliculitis. I have had both in that area. Not sure which yours is. [ more ]
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J-Pouch ForumsOstomy & Skin
How did u all manage to recover!!?
AllyKatAllyKat
AllyKat Yes Starry same as you. PS I pm you [ more ]
Starry01 Hi Allykat. I just had a perm ileostomy and the j pouch is diverted I guess. Not sure if that's the same as you. But for a few weeks I felt the same as you. Then all of a sudden i am able to do almost anything and eat like crazy! However, I do still get tired easily and I am working On building myself up in case I have to get the jpouch removed soon. I'm walking and trying to get as much rest as my body needs. Give yourself some Time and I am sure you will be back normal - or even better!!!! [ more ]
PoucherInTO Ohhhhh AllyKat - I know I know, it was by far the HARDEST thing I've ever had to do! You are right, it feels like being run over by a truck, and then the truck backs over you again! I was so tired, I barely had enough energy to soap myself in the shower, and forget about raising my arms to wash my hair! Everything takes a ton of energy, and like you, I barely had an appetite. I ate enough to make my home care RN happy - as she would come every day and ask about food and rest, but I really... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchoscopy
S Shainy
CeeeeCeeee I see my surgeon for follow up. If I'm having no problems I have him do a scope every three years. Otherwise, as needed. I have much confidence in my surgeon's ability to trouble shoot. My GI is great for handling digestive issues which may or may not involve my J-pouch......usually not! I'm sure my surgeon could also handle those things but I'd rather save him for pouch related issues. I feel fortunate to have both of these physicians on my "team". [ more ]
LoraCH I have l always gone back to my surgeon for my pouch check ups ... with that being said, how often do you all go for check ups and how important are they if there are no pouch problems? I am 10 years post op and see my surgeon every couple of years and I am due for a visit, but I keep putting it off. [ more ]
ceew My surgeon said I could just come back to him for Pouchoscopy. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Fistula and Abcess Repair need advice
P phonix2g
Jan Dollar Maybe a little soon, but hard to tell. Too bad that they did not give you better instructions on what to expect. This is where a little communication goes a long way. But, calling the surgeon's office is a good idea. I doubt he'll reinsert it, but you never know. Keep up the soaks, so it does not scab over in the meantime. Jan [ more ]
phonix2g Thanks for the replies. The only issue I have now is my procedure was this past Thursday and Im sitting here holding the drain in my hand because it somehow dislodged itself. I knew I felt it little by little making its way out even avoiding wiping in that area I would usually just pat it dry and follow with a bath. Not sure whether my constant moving and tossing and turning while I was sleeping helped the cause. If it is supposed to eventually come out then I guess no worries but is it too... [ more ]
Jan Dollar Yes, you are correct that this is a drain to keep the abscess open and draining until it heals from the inside. Obviously, the setons did not work and your surgeon tried this more aggressive approach, with an attempt to remove the fistula tract. Fingers crossed this works for you. I suggest you wear something absorbant to catch the drainage, rather than wiping constantly. Sanitary napkins should do the trick. Jan [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
back to site
L LoraCH
LoraCH Good luck with your surgeries. Gas is always an issue, but it does get better over time. For me it depends a lot on what and when I eat. My tummy does rumble a lot more then it did with the colon ... whether I am hungry or not or just ate. Best Wishes! [ more ]
aka KNKLHEAD Hi, Lora! Great to hear from successful J-pouchers. I have my "third takedown" next week with Dr. Remzi, but very optimistic this go-round! Congratulations to you. I was just thinking the other day, that people that post on this forum and end up with a good-functioning j-pouch often "graduate" to not posting any more! While you are here, I"ll ask .. it seems as if my loop ileo is putting out quite a bit more gas than usual and I"m up twice a night often to take care of business. I'm sure... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Cipro
F Fosty
Fosty Scott - I will definitely consider what you are saying. I have time to see how this will work for me and would prefer not to have the surgery if I can help it. Time will tell. Thanks so much for all your input as it is very helpful especially with being new to the antibiotic treatment. [ more ]
AllyKat I feel for you in Canada having to wait so long to see a Dr. Scott I totally agree with you. [ more ]
Scott F It's important not to mix up long-term steroid use, which is incredibly damaging, with long-term antibiotic use. Long term steroid use is absolutely worth having surgery to stop. Long-term antibiotic use (assuming they are working well) is likely to be better for most people than surgery. Some folks here have done well on rotating antibiotics for as long as 20 years, if my memory serves correctly, and I've been doing it for about 5 years (with much less rotation). It's tempting to imagine a... [ more ]
See all 19 replies...
J-Pouch ForumsHelp! Need advice now!
Anal bleeding with running
S SueR
Jake McCoy I have to revive this old thread and thank everybody for the good info. RJG-Ross, I plan to get cactus paddles and try that out. I found this thread and website via a Google search. This is my first post on this site. I got back into running again after not running for about 15 years. I'm 41. I got my J-pouch 6 years ago. I bleed from from my anus occasionally when I run or bike. I think it's because running and biking are the only activities in which I push myself into a second wind. It... [ more ]
RJG-Ross I haven't been seeing any blood in well over a month now and haven't been eating nopales in a while; at least two months. The past few weeks I've been using ground flax seeds sporadically. Yet I've been running over 35 minutes 3-4 days per week during a period of very heavy work without bleeding. So, I'm thinking that the ground flax seeds healed whatever it was that caused the bleeding while running. Ground flax is much easier to ingest (2 tablespoons) in a large glass of lime or lemon... [ more ]
ChristineinDenver All of this makes me so much calmer. I have been training for a long bike ride and did two 30 mile rides over the weekend. I felt great until bedtime ~ when the bleeding started. Sounds like a combo of dehydration and perhaps the irritation from the saddle could be causing this. I have been using the ground flax with great success, but will also add some nopales to the regimen. [ more ]
See all 40 replies...
J-Pouch ForumsPouchitis
Pouchitis or not
A Audrey1949
Jan Dollar Are you sure you are being set up for a colonoscopy? They never use that long scope (or shouldn't be), but sometimes they call it colonoscopy because of the room tupe and sedation they are ordering. Mine is always ordered as a flexible sigmoidoscopy, but my GI uses a pediatric endoscope and no sedation. I get lots of gas and night time trips with cuffitis flares. But there is also urgency and frequency, same as pouchitis. Only difference is the presence of blood in the stool. But you can get... [ more ]
Scott F Blood is more suggestive of cuffitis than pouchitis. If your pouchoscopy is being done by someone who's never heard of pouchitis then it may not be very helpful. [ more ]
Audrey1949 Thank you for replying Scott. I think there was blood in the samples which made me think it was pouchitis. I don't think my doctor had heard of it before when I suggested to her it might be that. I will definitely make sure that the person doing the scope knows that I have a pouch. Audrey [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Coffee is a trivial sacrifice
SavannahSavannah
AllyKat Ugg, thanks, I don't think of myself as inspirational. I had no choice. My pouch made the decision for me. I'm having a hard time recovering. Besides hating this bag, I'm so damn tired, beyond tired, little appetite. I guess when you get older you don't bonce back so fast. I hope it's just time, but my mind plays head games with me. 15 years with my pouch, all the surgical complications to get it right. All the meds I've been on! And now I get to relive everything over again. I wish I could... [ more ]
TE Marie Good to hear from you! I've wondered how you've been feeling. Thanks for posting. Giving up caffeine is a big deal. I never drank coffee but had a serious diet coke and diet pepsi problem for decades. One of the guys I worked with in the late 80's said that he envisioned me with a Big Gulp in my crib I use to say I was from the "pepsi generation" when asked if I wanted coffee About asking challenging questions, it isn't because I'm brave but more like I'm scared Everyone on this site has... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Need surgery! Ileostomy? J pouch? Laparoscopic method?
Oozie55Oozie55
TE Marie I don't think you should try to just have it all done in one surgery. I did it in 2 steps and sometimes wish I had waited more than 8 weeks for the take down surgery. I never made it back to work but wasn't able to work before the surgeries. I have other health problems and was a grandma when I finally had the surgeries. I don't know if they will be able to do laproscopic surgery because your prior doctor messed you up during surgery and their might be too many adhesions inside you. I might... [ more ]
Laney HE IS AWFUL , PLEASE DON'T LET HIM CUT YOU [ more ]
Laney Stay away from Dr. Klas. Please stay away from Dr. Klas. He ruined my life. In fact, I think about ending my life every day after he performed unnecessary surgery on me. I went to Cleveland Clinic and Dr. Remzi and Dr. Bo Shen were shocked at the way he butchered me. He created a bend in my colon that makes it impossible for me to eliminate. He was so cocky he didn't convert to an open surgery ( which I hear he is good at) and he let his surgical assistant do most of the surgery. And .NEVER... [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Had my surgery
FL Fight like a girl
Jan Dollar Maybe it was so big, it mimicked another organ? Imaging is not perfect. So sorry it took so many years for them to take a look. Hopefully, things will only get better from here. Will you need to go on birth control pills to prevent future ovarian cysts? Jan [ more ]
Scott F Wow, that's a pretty big thing to find as a surprise. Hadn't you had imaging studies (CT or MRI) before they assumed adhesions? Adhesions are normally "concluded" when everything else has been ruled out. Heal quickly! Good luck! [ more ]
See all 2 replies...
J-Pouch ForumsOstomy & Skin
Appetite after surgery
AllyKatAllyKat
liz11 are you dehydrated? highly likely because you probably have a loop if your jpouch was left in place. get hydrated first and then start on tiny tiny very frequent "mini meals" on "mini plates" - say just a bite of banana and a half a cracker. or one spoon of peanut butter. it will get better ally. this loop ileo could really change things positively for you. Try to get your mind around it so your body can try and heal. Good luck [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Surgery Recovery
AllyKatAllyKat
rachelraven My first big, open surgery I'd say at least 5 days (had to get through the ileus), but I DO remember my first puréed meal of ground up turkey being exquisite! Mind you, I'd been on bowel rest/TPN for nearly 4 weeks prior to surgery. Hadn't had food in that long. My takedown? I was hungry the next day, and ate the next day. I was only in the hospital about 3-4 days that time versus my 40 days the first go-round. [ more ]
Emmyschmemmy Hi AllyKat, I had the IPAA with loop ileostomy done in March and it took almost a full week post-op for my appetite to come back. I felt overwhelmingly tired for 8 weeks. I had my takedown in May and did not have any loss of appetite. I would say that the exhaustion was much less for this one...probably only a couple weeks. Although, even though I'm now 9 weeks post-op, it's nice to be able to justify taking a nap in the middle of the day. Hope you're feeling better! Emily [ more ]
Former Member Just after my j pouch creation, I didn't eat anything for 10 days, totally lost my appetite; I also lost 22lbs. By day 15 my appetite had completely returned, although I was advised to eat little but often rather than 3 set meals at set times. Since takedown, I'm still struggling to overcome the lethargy and remain hydrated. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Nausea
N NanJ
Fosty I find nausea comes and goes with me through the years of having my pouch. If still having movements and no pain should pass with gravol. Hope he feels better soon. [ more ]
See 1 reply...

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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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