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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 ForumsHelp! Need advice now!
Pouch sinus And pouch removal.
J jeane
Mysticobra You hit the nail on the head Scott. Time consuming. But there is two more things. The pain and uncertainty of going to appointments and doing tests while your condition is bad shape. Which brings me to your health and state of mind while trying to find out what it is that's not working. It can kill you while doing this. I was down to. 128 pounds. My body was telling me something. Of course this is all individual. Just my case. And I did make the right decision to get it out. I had a group of... [ more ]
Scott F Richard, your doctor was using sloppy language by describing your pouch as "healthy." Something about its construction was defective, or a defect developed later, though the defect(s) weren't visible on pouchoscopy. You made a perfectly reasonable decision to get your health back without a definitive explanation, but there's just about always an explanation. Finding out what's causing the failure can be difficult, expensive, and time consuming, and fixing it is sometimes impossible (but more... [ more ]
Mysticobra I had many scopes. Nothing was wrong and no explanation. I know. Weird. [ more ]
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J-Pouch ForumsK-Pouch Korner
Hoping to get K-Pouch, Need Advice
CS C. Susan
Kara Fred JenJen and C. Susan- my thoughts are with you both as you start a new endeavor for your K-pouches. It sounds like you are both on track with good surgeons. Use this forum for any questions as I have found a wealth of knowledge. The recovery from this surgery is difficult (those core muscles will be sore), but knowing the outcome will keep you motivated. The hardest part I have right now is eating the right foods. I wasn’t as worried having an ostomy, but with the K-pouch, everything you put... [ more ]
JLH Csusan I had posted an article on the k pouch korner, which is too long to post again here. Try this link https://www.j-pouch.org/topic/2...e-of-k-pouch-for-ibd If that doesn't work then go to the second page on the site. I think you'll find some of the information helpful. FYI, I asked what the failure rate was in the first year and it is about 10%. In the article the rate is much much higher because they used stats going back many years when the success rate was not good. One reason why I... [ more ]
C. Susan Hi Jeane, I will definitely keep you updated with any visit to Dr. Kiran. I was told by his assistant that he does take insurance. Unfortunately for me I have an HMO plan and not a PPO so at this time I am only covered to see doctors in New England. I am discussing this with my company's HR department in hopes to works something out. Regardless, I will still pursue a visit with him if he would like to move forward after reviewing my medical history. [ 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 ForumsHelp! Need advice now!
No consistency help!
K KLW
KLW Had my Takedown surgery Thursday the 28th April. They left the ileostomy hole wound now open and it will heal from inside out. I am wearing pull ups but have had no real problems. When I sleep one night I had a little leakage. I do wake up 1 to 2 times a night to go to bathroom. I bought a luxe bidet on Amazon and put it on my toilet. I love it. The cool water is refreshing and I am having no burning or stinging problems. When my bowel woke up it is pretty uncomfortable having food move... [ more ]
Scott F What goes into the ileostomy bag doesn't predict what will come out from your anus after takedown, particularly in the long run. [ more ]
KLW Jan. Thank you for your reply. Can you tell me what you mean by the ileostomy output has little to do with j pouch function? I'm confused now [ 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 ForumsOstomy & Skin
Flush stoma
M Momma
Saff I use eakin seal with a convex wafer - I think it would be worth trying. [ more ]
Lambiepie Good advice, Jan. Momma, I would suggest trying different convex wafers as they're not all the same. Marlen makes a bag with a very deep convex wafer. A belt hooked onto the bag pulls the wafer tighter to your body and can prevent output from seeping under the ring. When you wear a belt, the bag has to hang straight down, though, so the loops that the belt attaches to are even - 9:00 and 3:00 (I wear my bag angled towards my body so the belt loops 10:00 and 4:00 and, when I wore a belt, it... [ more ]
Jan Dollar I'd use the Eakins seals with the convex. People here have had really good luck with them. You may also want to look into an ostomy belt to make sure the flange stays put. Jan [ more ]
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J-Pouch ForumsOstomy & Skin
pouch-to-ileostomy : to leave the pouch or to remove it ? (that is the question :-))
A Arnaud
Saff I should also add that my diverted pouch is no longer so settled. It was ok for the first four years of disconnection, then in the last 1.5 years I've had increased discharge, pain and blood. Now looking at removal. [ more ]
Donna H These posts are from a long time ago but thought i would chime in. I have a loop ileo and my j-pouch had so much scar tissue around it that i could not be removed. I have had the ileo for 2 1/2 years and the leakage lately is terrible. I am looking for a solution but so far what the dr has ordered did nothing. I hate the thought of having this huge inconvenience forever. [ more ]
Pouchomarx is it ok to continue with a loop, or is it best to go with perm end? is one better than the other? if there is any chance that i may want to hook back up again should i stay with the loop? [ more ]
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J-Pouch ForumsHelp! Need advice now!
laxative for Pouchers
M maddie18
rachelraven Anything magnesium is generally less of an issue for me. Even mag sulfate tabs. They're "osmotics" and pull fluid into the bowel, making a looser stool. 1/2 to 1 tab works for me or 15mls of Milk of Mag works, too. Have found I do not need a full 30mls to get relief. [ more ]
maddie18 Thanks CTBarrister, much appreciated!! [ more ]
CTBarrister It will not block you up unless you have a partial obstruction or something else you are taking is constipating you. Prune juice does not constipate. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Flank pain, urology/nephrology issues
S SaraW
jodiloveslife I was having the same pain you are describing. It ended up being a good size cyst on my right ovary which kept growing and then was taken out. I was having referred pain. It's worth getting looked at if you haven't already. I had no idea my flank pain would have ended up being an ovarian cyst. I was shocked. Good luck and hope you find some relief!!! [ more ]
thumprhare Did they talk about stone possibility? Maybe ask family doc (depending on location of pain) for a right upper quadrant US? Any possibility of uterine issue? The fascia plane...one in particular goes to the liver area. Just thinking and hoping its figured out soon. [ more ]
SaraW I saw urology and was very disappointed in how the apt. went but anyway they don't think it is kidney but yet they want me to try 8 weeks of Macrobid antibiotic. I msgd my family Dr yesterday with my concerns and wanting to look into PSC. So it's more wait and see [ 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 ForumsHelp! Need advice now!
Surgery looking likely
J jtree
jtree Thanks for the responses! That's great advice CT. I am, no doubt, in denial. And have been since dx'd. I'm young(ish) 38. Great family, 9 and 5 year old. Very active, and healthy, until this. I know the writing is there, and I'm very close to accepting it, but still just in limbo. Still waiting to hear from Mayo for an appointment, and what is likely inevitable news. Thanks again for the replies. [ more ]
CTBarrister I waited too long to have surgery, to the point where my colon was, according to my surgeon, dissolving in his hands when it was taken out (from the inflammation). Long story behind that but the bottom line is that when the writing is on the wall, you just have to read it. A lot of the "I am thinking about having surgery" threads posted on this board leave one with the conclusion that the author is waiting for a miracle to happen. Miracles don't usually happen. This is not the movies, it is... [ more ]
CeeeeCeeee It took me three years of trying just about every medical intervention out there before totally accepting having J-pouch surgery to address my ulcerative colitis situation. A consultation with a wonderful GI doc at Cedars Sinai in Los Angeles convinced me enough was enough when she said to me, "You have learned to cope too well. So what if you have 6 B.M.s a day! You're having many more than that now with no control!" That was it! It has been 15 years and I'm convinced I made the very best... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal Soreness / Pressure
S SimpleX
CeeeeCeeee You are all describing my life.......last month. After about 15 years with my J-pouch I still am unprepared when things are out of ordinary! Pressure in the anal area is one situation which typically doesn't occur with me is of concern when it does happen! I call my surgeon who I rely on more than I do with my GI doc. Sometimes we connect and other times we don't for several days. This last time we didn't connect for days and by then, my symptoms were almost gone. All I did was switch to a... [ more ]
Mrs P Simplex You are not alone. I've had my j pouch for 16 years. Have struggled with pouchitis over the years. The last 2 years I've been experiencing terrible cramping , pressure and urgency. I've tried so many different approaches. My Dr says it's a stricture and I need to drink Konsul to create bulk. But! That creates gas and cramping. The pharmacist I work with suggested Equalactin. I found it on EBay. Still trying to figure out how much and when to take it. I also bought Heathers Tummy... [ more ]
YogiLori I have that pressure at times. I have had my J-pouch for six months so I was hoping this would get better in time. It can be intense at times. Some days are good and others not. I take probiotics daily, is the VSL 3 more helpful? Is the fasting something someone recommended? I eat less and not after six pm usually. Lori [ 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 ]
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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 ❤️
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J-Pouch ForumsHelp! Need advice now!
difficult to walk with pain
MN marc nolan
Angie Wilson Hang in there - that butt pain is awful. Hope the ilex does the trick for you - Jan is so great - she is the angel nurse on here. I hope she knows how much she helps everyone on this forum. Feel better soon and know people out here care. [ more ]
marc nolan Jan, Thank you for the advise, I was using every cream in the world to get rid of the fungal infection and all the nefedipine in the world for the fissure. I should have just used Ilex from the start and kept the area dry and clean with plenty of sitz baths. [ more ]
Jan Dollar How about Flagyl, tindamax or Rifaximin? Cipro is not the only pouchitis antibiotic. If the diltiazem does not work, please try adding Ilex to protect. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fistula
C canlafre
Jeffsmom We are doing the same thing! My son has an abscess and a fistula. He is going to to do exploratory surgery on May 12. They are going to look at then pouch and see if they can find the leak. In his case we know he has a leak, most likely at the suture line. That is most likely what the will do to you. Being under anastesia is the only way to do this type of exam. This well be round three for us. Good luck to you. [ more ]
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J-Pouch ForumsPouchitis
Dr Bo Shen now recommending hyperbaric oxygen chamber for pouchitis
C clouseau
Tom T ❤️
Scott F If the pouchitis/cuffitis is from ischemia (insufficient blood supply) then medications are unlikely to do the job. OTOH it sounds like antibiotics used to work for you, which doesn't fit well with ischemia, unless Shen believes the ischemia has developed somehow after a delay. If it really is caused by ischemia then the hyperbaric chamber might help by increasing the oxygen in the blood that does get there, but you might ask him why any improvement would be expected to continue after the... [ more ]
struggling Hi, I was recently at Dr. Shen for my first visit. I have been having Chronic Pouchitis ever since my pouch was formed. I have tried multiple meds to treat it but none have worked aside from antibiotics which are no longer effective. I went to Dr. Shen because I wanted to see someone who specializes in pouches. He found on the pouchoscopy that the main area of inflammation was the cuff (Severe Cuffitis) and because of that said I have ischemia related pouchitis. I also have mild pouchitis in... [ more ]
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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 ]
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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 ]
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J-Pouch ForumsHelp! Need advice now!
Sharp pains from Stomach down to groin
EmmaNZEmmaNZ
skn69 Emmanz, So sorry...no idea...it could be anything from gas to a minor blocage to adhesions building up on through... Do you have any chills or fever? How is your output? Normal or not? Can you eat normally (a great indicator)? Can you get a heating pad to see if it will help or a hot bath? No matter what the pain it is usually my go to method for easing pain... My usual reaction to unusal pain is try to ride it out if there is no fever or severe symptoms and apply heat...if things get worse... [ more ]
See 1 reply...
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 ]
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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 ]
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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 ]
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J-Pouch ForumsHelp! Need advice now!
Surgery -2 Step or 3 Step?
Becky18Becky18
rachelraven I was hospitalized and on high dose steroids, TPN, and still bleeding and had a two step. My surgeon said he'd never do one steps ever again as he had one patient do extremely poorly, and one was one too many. I was only 19, though, and if you will, besides a rotten colon, otherwise healthy. That sounds bizarre but it kind of was true. Youth has a way of making everything less awful, sometimes. I had 4 months between surgeries. Everything went classically well for me, and I was commuting to... [ more ]
YogiLori I had the three phase surgery. My surgeon wanted to do the two phase as I had a spot on my colon they were concerned was a possible cancer. To be removed they had to build the pouch right then. I thought it would be too much for my weakened body. It's a long surgery. My surgeon agreed to do the three phase and left the part of colon with the spot (you have to have part of the lower colon remain to have viability in the area you are attaching to, they then remove it in third). I was only... [ more ]
skn69 How open is your surgeon to discussing options with you? Some are willing to listen to your arguements and reasons and then may consider alternate options if they think that it is possible and that it will not put you or your health and future pouch health in danger. Mine was in the long run and we wanted to do my k pouch in 1 shot but ended up with 3 steps due to how weak I was and what he found when he got in there. I wasn't happy but the end result was worth it. Sharon ps. Writing down... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Could it be Spondyloarthritis?.
MB Mountain Baker
rachelraven Illnesses often intensify regular pain, especially joint. If it's a virus, it'll just have to run its course. I'd do the PCP thing first. [ more ]
Jan Dollar When I was diagnosed, my back pain was predominately sacroiliac (upper buttock). It radiated to my hips. I couldn't even roll over in bed. It didn't matter what I did, it persisted. When my rheumy conducted my history, she said the fact that I had decades of various tedinopathies (particularly Achilles and plantar fasciitis) and UC, pointed to enteropathic arthritis. All my blood studies (RA, HLA-B27, ANA, etc. were all negative). If your pain does not resolve, definitely seek a rheumatology... [ more ]
Mountain Baker Thanks for responding. I have had back pain for years but nothing like this. I'm hoping that it is just a virus. Theresa [ more ]
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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 ]
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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 ]
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J-Pouch ForumsWomen's Health & Pregnancy
Fallopian tube infection due to scar tissue
LG LB Greenville
skn69 I am so sorry LB, It sucks...every time that there is a complication related to our other problems. I had salpangitis in '91 about , 12 yrs after my pouch surgery. It was due to an ectopic pregnancy that had gone undetected. (calcified) They did a Hysterosapinograph (sp???) to diagnosis it. They put me on massive doses of pain meds and antibiotics for 3 months but it didn't help. I had a great general surgeon and Obsgyn. They did minimally invasive surgery, actually repositionned my k pouch... [ more ]
Jan Dollar The only remedy I have heard of is removal of the tubes, and often the ovaries. The scar tissue (adhesions) is like stcky rubber bands that embed into the organs. Difficult, if not impossible, to remove. If the are only a few of these adhesions, surgical release might be possible. If you are lucky, this will be a one time event and you won't need to worry about it. Jan [ more ]
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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 ]
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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 ]
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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 ]
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J-Pouch ForumsPouchitis
Treatment - Antibiotics might not be the right solution
FM Former Member
Joanne Hello, I haven't been on this forum for quite a while. I have had pouchitis twice since my surgery in 2001. Perhaps I had it more often but it was subclinical. I think I am having it now. I have multiple other problems as well. I was diagnosed with CLL - chronic lymphocytic leukemia and SLL -small cell lymphocytic lymphoma which may have to be treated because of a SBO I had recently which may be related to the proliferation of enlarged lymph nodes in my belly. I also have a MAC bacterial... [ more ]
JJA We are successfully treating my chronic, retractable pouchitis with a 2-prong approach-I rotate antibiotics every 2 weeks (Levoquin & Xifaxin) AND I take Immuran to suppress immune response. These antibiotics alone were NOT cutting it, but after being on the 2 prong treatment for over a year I stopped the antibiotics for awhile as I was trying to fight off what I thought was thrush (turns out it wasn't). Lo and behold, pouchitis symptoms started to creep up, so I need both but when on... [ more ]
LauraLee Cheers, I experienced a similar situation as you. I had a flu bug about a month ago that ended it in a awful case of Pouchitis (in my case I had all the symptoms). I tried CIpro (it works sometimes, other ones not) with no luck, then my doctor put me on Flagyl (made me too sick). Finally after feeling terrible for weeks, the doctor put me on 40 mg, Prednisone (which I know is not a good way to treat Pouchitis, but I was desperate) and I started to feel better, my inflammation reduced... [ more ]
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J-Pouch ForumsGeneral Discussion
Abdo pain
K Kirsty
skn69 Sounds like me 3 days ago. Started with sharp pain, then cramps then water and vomitting for 2 days...high fever and chills. I thought that it was an occlusion (could still be part of the problem) but from what I hear I am not alone and I suspect that there is a nasty stomach bug making the rounds. Keep hydrated if you can keep anything down at all. I used juice (pomegranite or apple) diluted with water on ice. Gravol helped me a lot. If you cannot keep anything down there are chewables or... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
A personal question
MO Mary O
skn69 Hi Mary, Well to start with, congratulations for still caring enough to worry about it and want to improve things. Not everyone does or can. When you say incontinence was it due to a pouch problem or a sphincter problem or both? I get the metal difficulty with incontence, that is why I had my pouch done...no sphincter...sort of kills the mood. I have found that the most useful thing that I have ever done for my sex life is keep my pelvic floor very, very strong. Since menopause it has been... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Obstruction? Stricture? Pelvic floor dysfunction? Unsure
A aliiien
Jan Dollar Jake, there are oodles of posts here about diet, and I probably am the worst person to ask for advice on that. It is mostly because I am not a believer in a "j-pouch diet," but more of a diet that works for my j-pouch or your j-pouch. I truly do not worry about it and if something causes problems, I just avoid it in the future. After 20+ years with a j-pouch I try to ignore it as much as I can. I could tell you to eat this and avoid that, but it may be completely wrong for you. The main... [ more ]
aliiien Hi Jan! It's been about eight months since I saw my GI; I was scoped because I was having symptoms that didn't match what other episodes of pouchitis I'd had before, although that turned out as only pouchitis as well (whew!). Everything looked fine, and he biopsied a few pieces which were also fine. I have a host of things non-GI related to see my PCP about anyway (appointment is today), so I thought I'd go to him first as a front-line in the hope that I'm just missing something and it's... [ more ]
JakeG88 Gastrointestinal . Yes I believe there is a very intelligent one not far from me. I will be requesting to see her In the next day or two. I'm cutting more things out of my diet things that usually bothered me more. Would you know of a few different foods that might be easier on my system. I'm all worried an paranoid and I know that's worsening things. [ more ]
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J-Pouch ForumsGeneral Discussion
possible hernia
bev 69bev 69
Spooky Bev, Right now we are just managing the adhesions conservatively. In 2014, I had 5-6 partial obstructions in a 4 month period (or else it was the same obstruction that never quite fully cleared), and my surgeon was suggesting surgery to cut down some of the adhesions if that continued. But I think what had happened, is that my intestine kinked due to the adhesions, and then ultimately unkinked on its own. This can happen. At this point, I am just watching what I eat and doing self massage of... [ more ]
bev 69 Thanks for all the info Spooky, you never mentioned though what your outcome was with your adhesion problem ? additional info is always a bonus , thanks [ more ]
Spooky I've had problems with adhesions in the same area, and I have had several partial obstructions as a result. My surgeon had suspected a hernia at one point, but after several palpatory exams and an MRI, no hernia was detected. If you do have adhesions, they can be tricky to deal with. Surgery is an option if they are causing significant issues for you, but the drawback is that surgical release often leads to more adhesions down the road. If the pain persists, one thing you could look into is... [ 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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