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J-Pouch ForumsGeneral Discussion
Citrucel question??
PouchomarxPouchomarx
Jan Dollar You don't know until you try it. Since you have it, you may as well use it and see if it is helpful for you. Jan [ more ]
Angie Wilson I used it years ago and it helped slow things down. I was told to use it differently than package directions - put in a spoonful and added much less water. I did that for about 5 years....slowly, my body adapted and I don't use it or anything to "slow things down" anymore. I've had a couple of obstructions....don't want to risk it. So, I just east less often and stay near the bathroom. I am fortunate in that I quit my job and can stay home or be home off and on - I like privacy. I really... [ more ]
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J-Pouch ForumsGeneral Discussion
Aleve
Rosie128Rosie128
Rosie128 Thanks Jan! I was afraid of that! Lol. I can tolerate Motrin in small doses, but nervous to rock the boat with a jump to Aleve because it is a different drug. Hoping to get back on prescription Migraine meds soon, but at the moment I only have OTC available to me. I feel like my life is constantly trying to find that balance and sometimes doing well and other times failing miserably! Lol [ more ]
Jan Dollar It is an individual thing. Some with UC are more sensitive to NSAIDs and it quickly causes pouchitis. Others tolerate it pretty well. For only occasional use, it should be OK, as long as you don't have a known tendency for it to cause IBD flares. I was able to take high dose NSAIDs for years before it caused gut problems. Just be aware that at any time you can develop side effects and have to stop taking them. It is all about risk vs. benefit, and finding that balance. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Anybody trying Viberzi (eluxadoline)?
W WhiskeyAce
TinCan I experimented with it a couple of months ago on the advice of my PCP, but did not find it to be particularly helpful for me. It made me feel quite drowsy and somewhat constipated. But you may still want to give it a try as our (pouch people) response to drugs seem so individualistic. One thing to consider is the cost. It was still so new that it was not covered by my insurance plan. Fortunately my PCP had a coupon good for a free first prescription - otherwise it would have cost mega-dollars. [ more ]
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J-Pouch ForumsGeneral Discussion
What kind of symptoms does your body go through when rejecting a colon from a colon transplant?
FM Former Member
CTBarrister Yes, if your liver fails and you can't get another one, it's all over, whereas colons are quite expendable. I read that liver transplants have a 5 year survival rate of about 78%, which isn't terribly high. Among the 22% who didn't make it 5 years was Baseball Hall of Famer Mickey Mantle, who made it only a few months with his transplanted liver. [ more ]
Jan Dollar The difference is that you cannot live without a functioning liver. The same is not true for the colon. Jan [ more ]
Jeffsmom Maybe they would do a transplant for the same reason they do transplants on people with PSC. That autoimmune as well and they do transplants all the time. Sometimes it works, some times, not .... [ more ]
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J-Pouch ForumsGeneral Discussion
New to this Forum & feeling totally blindsided by what I'm learning...HELP!?
FaithHopeLoveFaithHopeLove
Angie Wilson I am so glad you found us and so, so sorry you have been through the wringer...and then some. I think Scott and Jan did an excellent job of summing up a starting point for you. I have had my j pouch for 30 years - and I did not start in this forum until about a year ago - I have found it the most wonderful thing I have done for myself in ...ages and ages. You will find kind, wonderful people who will just give you support - and who may think of something you have not regarding what you are... [ more ]
Marthap Hello faithhopelove My first time posting. I read your story and feel for you my dear. I have had the j pouch for 21 yrs. I have had numerous problems, ( nothing like yours). I had my j pouch built at OHSU in Portland Or. My Dr. Name was Karen Deveney. She was wonderful for me. Hope this helps. mp [ more ]
aka KNKLHEAD I am very confident you're not going to get rude or mean comments on this board, so you've come to a good place. I can't hold a candle to what Jan and Scott have offered -- they're very knowledgeable, along with others here too! I'll keep it at "Welcome!" Best wishes. I am very sorry for your issues, but better days ahead! [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic headaches and neck and joint pain
C chris7
Carlyh_5 It’s true that joint pain is one of biggest problem these days. Most of people have been suffering from this terrible pain. I just got to know that acupuncture is a great way to treat joint pain. Actually my mom got this therapy at an acupuncture clinic clinic and has much relief now. [ more ]
Branchy Hy everyone,I have same problems for 5 month. My takedown was on 28th September last year and I was doing well. Start takeing probiotics and multivitamines and minerals from first day. Than at the end of the year arthritis get me. Since than I am in hell. It walks around - right side knee,hip,shoulder and now neck,jaw and ear. Some days I can barrely wake up and stand. I am on the edge. Is there end??? [ more ]
diana schm I agree the gastros that we have seen don't seem very compassionate at all. One made me feel that my son was playing me with all of his sicknesses. I am going to see if an immunologist can help. I hate feeling as though I need to be embarrassed about him missing so much school. [ more ]
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J-Pouch ForumsGeneral Discussion
Extended release drugs
MO Mary O
Jan Dollar Essentially, it all depends on your transit time. Most extended release tablets will release the second dose 4-6 hours after you take it. The first dose is immediate release. Jan [ more ]
skn69 Thanks Mary, I had a long conversation with my pharmacist and he informed me that the meds that can be cut in half (they have a line through the middle) can be quartered too...so I quarter some of them but I do avoid most like the plague...his rule? If you take the pill and it comes out whole on the other end, then you are not absorbing what you need from it. When I can I get the normal kind or peel the gastro-resistant film off of them. Sharon [ more ]
Mary O Thanks for all of the responses. Just FYI, I messaged my gastroenterologist as well, and here is her response (based specifically on my situation): "Overall, there's a possibility of malabsorption of some vitamins or minerals, like vitamin b12 or Vitamin D. You still have an extensive amount of small bowel remaining, so there shouldn't be an issue with malabsorption." "...all your medications should have no issues with absorption, including the extended release medications." Sharon, for what... [ more ]
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J-Pouch ForumsGeneral Discussion
Local j-pouch support group
NoGutNoGut
deweyj ask your ostomy nurse if she would help facilitate one. to be candid being in IA, I am not sure if the CCFA has a local chapter, otherwise you could ask there. [ more ]
Mary O I seem to recall that the hospital with which my gastroenterologist is affiliated has a support group, but I live in a large city (Chicago). [ more ]
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J-Pouch ForumsGeneral Discussion
anybody deal with this one - it's new to me...
AW Angie Wilson
Angie Wilson Thanks - I am trying to drink tons of propel, water, powerade, gaterade, etc. - doing all I know to do. I am still functioning - just not well....I know to go to the ER if I need IV fluids - watched my Dad do this many times as he aged with the pouch. I just want them to figure this out and please God let me be able to take something to fix it. Now, I wait. Thanks for your advice - really, when you feel this bad, it just helps that anyone "out there" answers your question - it makes me feel... [ more ]
Former Member Don't know if this has already been mentioned and I failed to notice but diarrhea can lead to a loss of electrolytes and dehydration; this is probably why you're feeling run down. [ more ]
Angie Wilson Good for you - relax and surf web etc. - my gosh do you deserve it for all you do for us out here in pouch land. Take care, Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Pooping myself at night after pouchoscopy
PouchomarxPouchomarx
Angie Wilson So glad last 2 nights have been good. Hope things keep improving for you. [ more ]
Pouchomarx I have been good past 2 nights. I popped some immodium and tried to eat earlier in the evening and no accidents.. thanks [ more ]
Angie Wilson Well, I can't say for sure -but sometimes, just the fact that you had the scope can then cause inflammation and upset your muscles. It surely did mine on several occasions. And, it resolved itself within about a week. I hope yours does too. I know you are fed up. [ more ]
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J-Pouch ForumsGeneral Discussion
Question?
Mema 1Mema 1
Mema 1 I don't think so TE Marie, I don't have any symptoms of cuffitis. It hasn't happened again, so I'm hoping that it was just an internal hemorroid. [ more ]
TE Marie Can it be caused by cuffitis? I had some toilet bowls full of blood caused by it [ more ]
Jan Dollar Fiber maybe? The link I posted had the usual suggestions. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Marshmellow
P Pkitty
Francesca I've had a j pouche for a year now and have noticed when I get tired towards the end of the day I tend to get diarrhea. If I take three or four marshmallows before a meals it really helps to slow things down. I was told about marshmallows by the stomal therapist. They work for me and a good alternative to Lomitil (gastro stop) [ more ]
Pkitty Yeah I just don't understand how it works because marshmallows are sweet and usually sugar speeds up the GI track? [ more ]
Jeff D As Grace mentioned, when I had the temp ileo, I would eat a handful of marshmallows 10-15 minutes before I had to change the bag. It worked very effectively. The same strategy hasn't worked to slow digestion now that I have a jpouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Several pouch sinuses found
J jeane
Jan Dollar I think you reduce your risk by having the ostomy for a few months. It can help restore your health (both physical and mental) before taking on a major repair. While I've never been to the Cleveland Clinic, I've read countless stories of how Drs. Shen and Remzi (and Fazio) have been able to solve unsolvable pouch problems. There have been a few who have been unhappy with their care, but that happens everywhere. One thing for sure, you could use a break from butt issues! Jan [ more ]
jeane Thanks Jan. So far of all the medical doctors I have seen in five years, combined with all my independent research on my issues, you have described this best. The members on this site are so lucky to have you as an active member offering continual advice and support It's very sad. I honestly don't think I have Crohn's and considering how healthy I am otherwise, I should have been a perfect candidate for this surgery. I should have suspected something was very wrong on my scope soon after... [ more ]
Jan Dollar No leaks mean that there are no leaks at this time. Fistulas and sinuses are simply leaks that become little tunnels that are lined with epithelial tissue. It is the body's way of preventing widespread infection. Essentially, they become part of the GI tract, and this is why the body does not sense them as something to heal. If fecal material becomes trapped in them, it gets infected and causes a lot of symptoms. Sometimes they can open the sinus up to become part of the pouch. But, with the... [ more ]
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J-Pouch ForumsGeneral Discussion
Fistulas
C canlafre
Jeffsmom Some how you have to learn to say no. It's extremely difficult for me as well, but think of it this way. If you don't take care of you, you won't b able to be there for your kids in a good way. Your 11 year old is old enough to help with the little one and around the house too. It's ok if the laundry doesn't get done or the kids don't load the dishwasher the "right" way. The house will get messy but someone will get to it. Trust me, I can make Martha Stewart look like a sane person! I'm very... [ more ]
canlafre Saying no is hard, so I will find a compromise somewhere. [ more ]
Jan Dollar Ugh! Be sure to get your rest. Learn to say no. Hard, I know, when you are chief cook and bottle washer (AKA, Supermom)! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch to ileostomy
J JMT
JMT Thanks Richard That helps [ more ]
Mysticobra JMT. I do hope you come to a good conclusion. 14 years with the pouch is a long time and will certainly be a problem. From what I have read so far the longer you have it the more scarring and adhesions occur. Mine was only in for a bit over two years and came right out. As I have said in other posts. I had immediate relief and success. I did not expect it. As you said I expected more suffering. I was wrong. Took awhile of course because it is another major surgery. But it worked out. I now... [ more ]
JMT Thanks Jan & Scot. Yeah that's my fear. Going through surgery and still suffering, [ more ]
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J-Pouch ForumsGeneral Discussion
Shen scope today....
PouchomarxPouchomarx
Angie Wilson glad to hear your good news, Poucho. I know you are so relieved. [ more ]
Jan Dollar Very good news! Of course we all should avoid straining. For all I know, all j-pouches have a bit of weakness in this way, just like all pouches have a small level of inflammation. Hopefully you can now move on and accept some imperfections without worrying that they will snowball into terrible complications! Jan [ more ]
Pouchomarx Spoke with both Shen and Remzi this morning and was told the prolapse is very mild and will have similar symptoms to hemorrhoids and only thing I can do is avoid excessive straining. The pouchoscopy was normal and well structured. Remzi stated that this is the last thing I need to worry about and to move on and go enjoy life now!!.. I feel so much better after this conversation.. [ more ]
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J-Pouch ForumsGeneral Discussion
stupid question?
PouchomarxPouchomarx
Pouchomarx According to Dr Shen, even though I had a handsewn mucousectomy with my pouch redo, I can still get inflammation there at the connection site. Similar to cuffitis, but not really a cuff there. [ more ]
Scott F Well, body parts that have been removed tend not to get diseases. OTOH, we all still have plenty of body parts left. I'd recommend enjoying them while they are working. There is a wonderful repeated line in the movie Bridge of Spies. An old spy keeps getting asked "aren't you worried about <the latest threat>?" His taciturn reply: "Would it help?" [ more ]
jeane If pouch is hand seen they take out tectal cuff so I would say you should not get cuffitis. [ more ]
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J-Pouch ForumsGeneral Discussion
Fiber / Nutrition Question
KPKP
KP Thanks Jan! I'll be picking up some pepto this evening. [ more ]
Jan Dollar Gee, I think if you can easily get a finger in there, you are not strictured. When my pouchitis is bad, I have trouble emptying. By the way, I also note less than stellar results when on XIfaxin, and my GI wants me to use it more than the Cipro or Flagyl. So, when I am on it, I also take 1 Pepto Bismol caplet (generic from Walmart is cheap) 3 times day. That combination seems to improve the Xifaxin efficacy. Jan [ more ]
KP Thanks for the responses! It's good to hear that it's possible to eat pretty much as one would like. I don't feel real confident eating whatever yet. Antibiotics are helping. I've been on them for around 3 months taking 2-3 day breaks every few weeks to see if I can stop taking them. Once off of my meds, Pouchitis roars back in around 24 hours. Mostly Cipro, some Tindamax and currently Xifaxin. Real gassy on the Xifaxin, though I can tell it's doing something. On a side note, is it possible... [ more ]
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J-Pouch ForumsGeneral Discussion
Any successes with fistulas out there?
L LC
n/a Oops, mine isn't perianal, it's perineal. The docs call it pouch-vaginal but it does not go through vag. Yes, in my humble opinion, it feels quite a bit better to have a seton than it did to have abscessing/popping. I am also not interested in "trying" this or that (surgery, plug, lift, what-have-you) - the seton, while not a perfect solution, seems to be the least harmful and easiest thing to do until something that is proven comes along. We can always hope for that! [ more ]
LC N/A your fistula sounds a lot like mine. I don't typically have a lot of stool but if my pouch gets upset I have some and it hurts and makes it inflammed. I am making an appointment with a surgeon I've seen at Johns Hopkins to see what he suggests but I am leaning towards the seton. I am not at all interested in major surgery and unwilling to risk my otherwise perfect pouch. I am hoping there are advancements in the treatment of fistulas. Currently they are treated the way they have always... [ more ]
n/a So sorry you're going through this. I've had my jpouch-perianal fistula for 5+ years now. At the beginning, without the seton, I went through the usual cycle which involved the fistula closing, pain with the pressure, then popping/relief. Repeat. With the seton, I really have no pain, but it still interferes with martial relations due to its location. I still have some drainage, but no poo-drainage for the most part, mostly small amts of mucous/pus, which is taken care of with a small cotton... [ more ]
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J-Pouch ForumsGeneral Discussion
Doing good 2 years, but metabolism has changed
allswellallswell
Jan Dollar Yes, major surgery, and gut surgery in particular, can affect your metabolism. I was always reasonably thin in my youth (except when on prednisone). Had colectomy and j-pouch at age 40. I was active, yet pounds packed on. I guess my body is wanting to stow energy for the next medical crisis. Then came menopause (I was perimenopausal for a decade). I am now 20+ years post op and still struggle with weight. I just have to exercise about an hour a day and be mindful of portion control. I am not... [ more ]
allswell no this is different, This happened after I was feeling good and back to my normal level of activity. Thanks for the input though [ more ]
Scott F I tend to gain weight after surgeries. I think my activity level drops for a while. It doesn't generally go away without conscious effort. [ more ]
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J-Pouch ForumsGeneral Discussion
bleeding
L Letlive27
Jan Dollar Probably not the prednisone, but whatever is going on in your gut that is supposed to be treated by the prednisone. Hope your Entyvio kicks in soon! Jan [ more ]
Letlive27 Doing the taper off the Prednisone. I'm down to 20 mg. but my guts are killing me. Is it the Prednisone.? I eat before I take it. It's like my food is killing me. I go down to 10 mg. Thursday and then the following week I get my 2nd infusion of Entyvio. It was a surprise that the infusion only last a half hour. I'll stay on the Entocort for a good while afterwards. Still feel weird in the stomach or guts, but I'm not presently bleeding, so all is good on that front. [ more ]
Letlive27 That's right Jan. It was Cimzia. For the last three days on this Prednisone I'm experiencing some stomach pain and bloating. I didn't eat right away the first day, but have eaten first on all the consecutive days before I take it, but still feel crummy. [ more ]
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J-Pouch ForumsGeneral Discussion
Third world travel, j-pouch, crohns, meds, oh my! - nerves.
I ian337
CTBarrister You have to be careful because in these areas if you make a bathroom stop in the bush you could end up getting attacked by a lion or other animal. I have read about this happening. You definitely have to have some plan in place. Certainly I would bring Depends diapers at a minimum. Perhaps there are vehicles or buses that have toilets or there are portable toilets? However this can also be dangerous. A few years ago in Alberta a woman was killed by a black bear after emerging from a portable... [ more ]
skn69 I guess it depends on the organization sponsoring the safari. I dream of going on one but have similar concerns. Hubby who has been there already informed me that the conditions under which he went were "guy friendly" but not k pouch or girl friendly. I would ask for specific details of the toilet situation (and possibly bring a couple rolls of Charmin in your luggage ) and pack Pepto along with all emergency meds and a spray bottle of clean water for clean up in the bush) . I would be heart... [ more ]
Usual Suspect I have a similar question, but more specific. I have 1 1/2 old well functioning J-pouch, and I have opportunity to go on safari trips in S Africa. I've rarely been able to be without a toilet for more than 4 hours depending on time of day. Can sometimes need it a couple of times within a few hours (under U.S. conditions). Any thoughts how I can be sure to handle the 5 hour trek? They do make short pee stops in the bush, but don't think that'll do it for me. For convenience I thought of... [ more ]
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J-Pouch ForumsGeneral Discussion
Blood out of nowhere
PouchomarxPouchomarx
Angie Wilson Poucho - you have been thru the wringer -I know people are just trying to help. Hope your scope goes well on Thursday - mine is Friday. I've had blood too - very frightening - first times it's happened in many years- have had pouch 30 years. I've had a lot more pain than usual in GI, etc - and it's just plain upsetting and on really bad days, I just want it to end. Then, "good day" (which is not a "normal" day - but not so bad) - I enjoy myself so much. Just to read a book or do household... [ more ]
allswell I had bleeding for ten years also - the last 3 being a toilet full 12 times a day- so if it looks like that Im sure you know it, I just have panicked a few times when I saw what looked like blood in the bowl, but not as much as I used to see before surgery- and then a couple of movements later and it was gone. Then I sort of pieced together some food that probably was it. strawberries do it too. Anyway I was also mentally stressed the for a good five months after takedown when the pouch was... [ more ]
Pouchomarx with no disrespect, I have been through the ringer these past 10 years and I am pretty sure it was blood. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch removal
M Mark01
Mysticobra I strongly did not want an ileostomy either. Nobody does. But I have one and I have no issues. I would have had issues if I had converted my pouch to anything. The thing in all these discussions that bothers me the most I guess.... And I am guilty of it too.... Is the all out avoidance of wearing an appliance. No matter what we do we are altering our bodies to do something it's not supposed to do. But the big thing is finding what is right for each individual. I don't regret trying a j... [ more ]
BillV Ljz, I had to have my j pouch removed because of recurrent high grade dysplasia in the anal canal and I opted for a BCIR because I strongly did not want an ileostomy with its associated issues. Cleveland Clinic has an excellent reputation for dealing with problem j pouches and would be an excellent choice for determining if your current pouch could be fixed. They also do the k pouch procedure, which is similar to the BCIR. Both of those procedures do not require havinf an external bag. If... [ more ]
JLH have you considered a k pouch? got it at cleveland clinic 5 months ago and absolutely no regrets. the j had failed and i wanted something other than the ostomy. check out posts on the k pouch korner. [ more ]
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J-Pouch ForumsGeneral Discussion
Hemorrhoids
PouchomarxPouchomarx
Janiep When I replied that I disagree with your nurse ... It has nothing to do with your doctor. My surgeons nurse has given me incorrect advice a handful of times. My surgeon is known all over and she is a doctors' doctor at The Hospital of univerIty of Pennsylvania. But her nurse has been wrong. My surgeon said not to use witch hazel because it dries the rectumband exacerbates the rawness. I stopped using the witch hazel ... just Lidocaine and almost immediately it felt better. That worked for me... [ more ]
TinCan The only thing I can say is that I had roids too after my reversal (internal and external). I don't recall how long I had them, but they did eventually go away. I was given a prescription for a suppository that worked well, even if it only offered temporary relief (I'm sorry, but I don't recall what it was). I don't think it is something you should expect to deal with the rest of your life - probably just another one of those bumps in the road - so to speak. [ more ]
Pouchomarx my external hemorrhoid is better, now I think I have internal. Last night out of nowhere I had a bowl full of blood. scared the crap out of me. first thing this morning, no blood. just went to bathroom a little this afternoon and some blood at end of bowel movement. No real pain but a slight pinching in anal canal which ive had for awhile now. I have a scope set up with Dr Shen next Thursday just to make sure. I have no other symptoms and I feel fine...but scared about this and the bleeding. [ more ]
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J-Pouch ForumsGeneral Discussion
Strange discomfort on old stoma area
LaurieFLaurieF
SarahXYZ I have had a lot of luck with a physical therapist trained in my myofascial release. The area of my old stoma hurt with digestion, got bkockages, and felt knotted to touch. She's massaged/done this specific PT treatment and the area is so different feeling, looking, and digesting. I'd highly recommend seeing a PT who works with adhesions/scar tissue. [ more ]
Jan Dollar It probably is just adhesions tugging inside. Imaging won't show it. A CT or MRI might show a recurrent hernia, but it is unlikely with a mesh repair. If you feel well otherwise, I wouldn't worry too much about it. That said, this is a good time to get established with someone new. Call your surgeon's office and see whoever took over his cases, or get a referral to a gastroenterologist. You should be having periodic scopes anyway, and you don't have a surgeon for that. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
How Long Should You Hold For To Stretch Pouch
Anthony GambleAnthony Gamble
Pouchomarx I am not sure they would try Entocort since I am only 7 weeks out from takedown surgery. I have been on it in the past and it helped greatly. I guess I will find out what Shen says on Thursday [ more ]
CTBarrister The inflammation subsided due to (1) dramatic change in diet; (2) Entocort; more recently when inflammation worsened again, Remicade. This inflammation was chronic inflammation that had gotten worse over a period of 20 years. More recently it's dramatically improved due to Remicade. [ more ]
Pouchomarx how did you get the inflammation to subside? reason I ask is that I had my takedown 7 weeks ago and a few weeks ago I was in hospital with bad abdominal pains and a ct scan showed severe inflammation 20cm proximal(above) the connection site of the ileostomy. they said it was not typical at all but it was for sure inflammation. I stayed in there for 2 days with basically just antibiotics and sent home an 10 day course of them as well. It has been much better but some days it still hurts and I... [ more ]
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J-Pouch ForumsGeneral Discussion
again the fistula question
J JHendrix
JHendrix Thanks. I think I need to learn the anatomy to get a better sense of it all. I will take mucous over stool any day though! [ more ]
rachelraven Mine is 90% mucus, occasionally the color will change, and that's when I know some stool slipped through. It's probably not constant because the internal hole isn't always up against stool, you know? Unless some stool slips by if, say, it sneaks through the sphincters? Maybe... [ more ]
JHendrix Thanks for that Rachel. But I have to say I am still confused as to why it is only mucous that is draining and not stool if the tract is connecting the bowel (at anastomosis) to the vagina. [ more ]
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J-Pouch ForumsGeneral Discussion
Tumeric
LouJrLouJr
JLH here's a short article on some research. some good news, but need for more testing http://well.blogs.nytimes.com/...benefits/?ref=health [ more ]
LouJr Thanks Scott. I haven't ruled it out completely but am wary of it. [ more ]
Scott F Drugs.com has a decent, relatively authoritative article on turmeric. http://www.drugs.com/npc/turmeric.html It's relatively nontoxic, but apparently can stimulate menstruation and cause abortion. It seems that it's used to treat hemorrhage rather than causing it. And it may increase susceptibility to kidney stones. [ more ]
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J-Pouch ForumsGeneral Discussion
Hard to explain...
S SonnyJ215
Jan Dollar Please go to the pouchitis forum and you'll find a lot of information. Jan [ more ]
SonnyJ215 Thank you Jan but please explain a lil what are symptoms of pouchitis and cuffitis I'd really appreciate it [ more ]
Jan Dollar Gee, this early, it is hard to tell. But, I had that for a minimum of 6-8 months. However, I had a 1-step, somperhaps the comparison is not valid. Still, there is a long adaptation/healing phase. Did you know it takes up to a year for nerves to regenerate? Until then, there's a lot of sensitivity/irritability in the surgical area. Sure, they preserve the main nerves, but there are minor nerve fibers that are interrupted. For example, the area around my midline incision was numb for a full... [ more ]
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J-Pouch ForumsGeneral Discussion
Here we go, again! Round Three
JeffsmomJeffsmom
skn69 Hi Diane Ok...here comes the cheer leader pep talk...yes you come first or hubby is going to end up a widower. That is the bottom line...then what are you going to do? Follow Jeff from heaven to his appointments? He will eventually have the surgery, get or not get an ileo...but he will not get another mom...certainly not one like you. The world is full of healthy widowers who were married to martyrs. They remarry quickly looking for someone else to care for them! You and your body need to... [ more ]
TE Marie Dear Diane, You've heard "you need to take care of yourself first because if you don't you will ultimately be unable to care for others". It goes something like that. Well it is a load of crap. It's easier said than done and having an adult child with Jeffrey's problems is a 24/7 job. It's not like a young mother with children to take care of. That said you are right. You need to have those important appointments. Can your husband take over for you? If he doesn't he might end up with an ill... [ more ]
Jeffsmom Question for Mom's and other caregivers. How on earth do you take care of yourself! Every time I made a doctor's appointment, something gets in the way. On May 12th, I have an echo cardo gram scheduled. I was supposed to have this in January! Getting it rescheduled is like an act of congress. It takes soooo long. I don't have time to wait! I have been trying to schedule a routine colonoscopy since August! And I'm trying to have weight loss surgery. I have a bunch of requirements that I have... [ more ]
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J-Pouch ForumsGeneral Discussion
Incomplete emptying / antibiotics
Richard_UKRichard_UK
Scott F I've also been on antibiotics (chiefly Cipro) continuously for about five years. Rotating them is preferable, but not feasible for everyone (e.g. me). It's worth emphasizing that I'm completely well on antibiotics. It's called antibiotic-dependent pouchitis. [ more ]
michhebe I have never had good results with flagyl so for approximately 5 years now, I use Cipro 500mg twice daily (10-14 days) and get between 1 to 5 months without pouchitis problems. Hope this helps cipro for 10 days if better after 2 days cipro for 14 days if better only after 4 days [ more ]
CTBarrister Richard, Best to call it chronic inflammation, since I have it both in my pouch and above it in the neoterminal ileum. Since I started Remicade most of the inflammation in the J Pouch has cleared up. I have been on antibiotics for about 21 years plus, continuously. If taken chronically they have to be rotated. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
First Remicade Infusion
B Brewbirds
Jan Dollar I had my first infusion yesterday. I was premedicated with Claritin and Tylenol oral, and IV hydrocortisone. All went well. Other than boredom, no complaints. Brought my iPad and caught up on reading, email, surfing. I had 5mg/kg, seems like the standard start dose. Jan [ more ]
Brewbirds Thanks for all the great information! I have a feeling my dose will increase in time too so that's reassuring to know. I'll have a scope later in summer. Praying for a miracle till then!! [ more ]
LORI726 ❤️
See all 15 replies...
J-Pouch ForumsGeneral Discussion
Losing response to Humira?
BM boy's mom
Jan Dollar For me, it was a gradual return of symptoms, or there being a sensation of it "wearing off" before the next dose. With Humira, I had to have weekly injections, instead of every two weeks, and even then, the effect waned after a few years. I believe they can test for antibodies (I am sure they can for Remicade). But, my rheumy was content to just move on to the next thing. Inflammatory markers can be used in part to determine treatment efficacy. Jan [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Lab results indicating inflammation- Jan your knowledge?
mgmt10mgmt10
jeane I am dealing with this situation now. Diagnosed with UC, and had it for 25 years before surgery. Five years with pouch and pretty constant simmering inflammation (ulcers now) that is getting harder to control with antibiotics and I have been diagnosed with enteritis as well. But I also have an ongoing stricture at my connection that could be causing many of my symptoms. My GI feels certain I have UC. Surgeon is questioning Crohn's although all tests (promethius) SEVERAL scopes and biopsies... [ more ]
boy's mom 1. What was figured out here - Is it normal to have some inflammation? My son ( who is on humira) has had his inflammation creeping up via blood tests but normal cal protectin. GI wants to do an endoscopy and pouchoscopy even though because of normal cal protectin she does not expect to find anything in pouch. She wonders about disease in stomach. 2. But my son is already on humira with good trough levels so what could even be done if there is inflammation? [ more ]
mgmt10 Fq, You know, I think my memory is just shot. Thinking back now I seem to remember my doctor saying just that. I have a call into my family doctor to go over my labs that he has a copy of to explain it all. The dr. I saw today is a hematologist so it's not really his area of expertise all this ibd stuff. I guess that's why he told me to go see a GI. Confusing! [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Constipation/ small hard stools - 6 Days Post Takedown
Anthony GambleAnthony Gamble
ElmerFudd Make grape juice ("liquid-plumber" for the gut, I call it) a regular part of your diet. And I guarantee things will be more free-flowing [ more ]
Jan Dollar First thing is to increase your fluids. If you are still taking pain pills, wean off of them. Adding a fiber supplement could help, but you can also add roughage in the form of soft fruits and vegetables. Increase your activity. Jan [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
when does pain subside?
PouchomarxPouchomarx
Pouchomarx scheduled a scope with Shen on July6th since that was soonest I could get. I still have this slight pain on the right side below where ileostomy was closed, not sure again if its from the surgery itself or the setback I had a few weeks ago with the inflammation 20 cm proximal of the connection site. I emailed Shen this question and he emailed me back stating if this continues he wants to do pouchoscopy sooner. I told him this was soonest appointment I could get, so maybe he will pull strings... [ more ]
Pouchomarx Had my post op appt today with Remzi's nurse. She stated everything is going well it seems, besides the little setback I had last weekend with the inflammation issue. they still are stumped what caused that. But I am off all pain meds and today was last dose of antibiotic and feeling pretty ok. I still get pains under where the ileostomy was closed but she stated that can last between 3-6 months. I am going to bathroom 5-6 times a day and hemorrhoid is a lot better. Checked for strictures... [ more ]
Jeffsmom If you find out, could you let us know! Jeff is still on oxy [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
does imodium build a tolerance
pouchingtonpouchington
CTBarrister I have to be careful with Imodium. It interacts with antibiotics and potentially other things to slow things down too much. I had some severe cramps after breakfast Sunday morning which I am convinced was from taking too much Imodium the prior night. It's sold over the counter so people assume they can consume it like candy, but nothing that impacts on your bowels like this should be consumed like candy. I use it very sparingly. It's also caused a partial blockage when I took too many. Trial... [ more ]
Former Member During my many years of using Loperamide with & without a Stoma and now with a J pouch, I still take 3 or 4 per day, depending on consistency of output. Only time I've taken six per day was over a 2 to 3 week period during a flare up before I was actually diagnosed with UC [ more ]
Jan Dollar From what I have read in the literature, a tolerance to the GI effects of loperamide (Imodium) has not been observed. However, that does not mean that your symptoms cannot worsen to the point that it becomes less effective or ineffective. Tolerance is where you need to take increasing doses to achieve the same effect. This is what occurs with the analgesic effects of opioids taken long term. But the GI effects remain constant with opioids (this is why opiate addicts are so troubled by... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Broken seton!
LORI726LORI726
LORI726 Thanks!! [ more ]
rachelraven I had one break, but never a cutting one. Same as Trojan. Same deal, too, they just replaced it under EUA. It's generally not too big of a deal. [ more ]
Trojan I had a seton that broke and fell out. It was a non-cutting seton. I had an EUA (Examination under anasthetic) durung which my surgeon replaced it. I imagine your surgeon would want to examine you and decide whether to replace the seton or not. If it has only been in a week I would guess it has broken rather than "cut" through [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
I am not alone! Grateful for group.
YogiLoriYogiLori
YogiLori Thanks to everyone for your support and encouragement. I appreciate it. ~ Lori [ more ]
lablover Welcome to the group. Nothing helped my husband (only predisone, but that made him feel awful). He has had his j-pouch for 21 years. [ more ]
Lambiepie Hi Lori, I'm a Lori, too and I am forever grateful for my yoga practice and how it helped me through my UC and four years of jpouch. It quieted my pouch down but it would act up the rest if the time. I now practice with an ostomy bag......your jpouch is still new. Your butt burn will get better. Stay true to your practice and let it keep helping you! [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
a little blood sometimes
PouchomarxPouchomarx
Jan Dollar Gee, I don't know. It all depends on you and your experience. I was eating salad on my third meal post op. Sure, I don't recommend wolfing down whole carrots. But a little lettuce chewed well should be OK, I think. But, don't eat it if it scares you or you were instructed not to. Jan [ more ]
Pouchomarx Salads? I would love to eat salad again but scares me with takedown being only 6 weeks ago. Isn't salad more risk of blockages? [ more ]
jeane Thank you. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
My visit With Dr Remzi update.
J jeane
Mysticobra Thank you Janet. I would have liked to try another pouch but my surgeon advised against it. I was pretty sick. I don't think I would have made it through another... well... failure. It's my luck so I may as well pass go and go straight to jail. Lol. By the time I was done with my pouch removal surgery I was down to 128 pounds from 176. I was headed in the wrong direction. Now that I have my ileo I have gained 19 pounds. It's not coming back fast but I'm not losing it either so that is good! [ more ]
JLH i concur, don't avoid it. i did for woefully too many years. one problem was that the docs always had another idea, another med, another bit of hope for me. of course i ultimately was to make the decision, but all their 'great' ideas' were landmines that i fell prey to. now i'm pain free and my life is different. i'm not saying the k pouch is for everybody, but for me it has been great. that said, in the end the bag would have worked too. richard, your on-going support of people--drawn from... [ more ]
Mysticobra Everyone avoids it. But avoided it in the beginning causes problems down the road. Something no surgeon tells you. The longer you have it the harder it is to have it removed successfully. To be blunt. It sucks. I know. Other problems crop up along with what your pouch gives you. I am just glad I didn't fight it too long to where removing it would be a problem within itself. Like I said. I was lucky. Certainly not with my colon or pouch. But with my Ostomy. It's trouble free. And I can now... [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Shaking, vomitting, running like water...freezing cold...
skn69skn69
skn69 Thanks for the info Janet, I will look into it...Am going away with hubby for 10 days and am panicked at the idea of having another occlusion while on vacation...Will stick to low residue, 0% fiber and nothing clogging at all. Hubby joined me at the graduation...we saw my directress but she disappeared after her speech and was not to be seen again. I got my share of hugs and kisses from the kids (expecially the girls) and the director congratulated me on my fine work and told hubby how I was... [ more ]
JLH Sharon This is what I was thinking of: https://pedialyte.com/products...nd_electrolyte_exact If you Google homemade electrolytes you will find a variety of recipes. After the K surgery, when I was constantly exhausted, I researched out electrolytes and found a good one at a health food store. As my kitchen is on the fifth floor I always look for things that are in powder instead of water.as the first ingredient. So great that your party went off well and you could eat! Nice to find pleasure... [ more ]
skn69 Thanks Janet, I have never tried the electrolyte replacements, probably because they didn't have them here when I was younger and I learned to make my own stuff. I make a homemade lemonaide with mint and sugar (or fake sugar) and drink gallons in the summer and at dinner each night. It is my go-to drink. When I am sick I cut either an astringient juice like pomegranite juice or apple (to slow things down) or a sweet juice like grape with crushed ice and water and sip very slowly. It does a... [ more ]
See all 13 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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