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J-Pouch ForumsGeneral Discussion
PTT blood test high?
dcpropilotdcpropilot
dcpropilot Thanks for your response. I am waiting to hear from back from the hematologist. Not much fun. [ more ]
Jan Dollar The only thing I can think of as being gut related is malabsorbtion of vitamin K, which is important for clotting factors. The colon absorbs some of it, so the lack of a colon, along with a possibility of poor absorbtion could lead to vitamin K deficiency and clotting dysfunction. It is pretty rare though. Most of our vitamin K is made by bacteria in the gut. http://www.merckmanuals.com/pr...icity/vitamin_k.html Further testing is necessary to rule out underlying diseases, like lupus or... [ more ]
Scott F None of those things seem very likely to elevate your PTT. If it persists you'll need someone, perhaps a hematologist, to help you figure it out. [ more ]
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J-Pouch ForumsGeneral Discussion
Pretakedown cuffitis?
SolomonSealSolomonSeal
Jan Dollar Not really, other than seeing improvement when the fecal streamis restored. If it is bad sometimes short chain fatty acid enemas can help. If it is regular cuffitis, you can use Canasa or hydrocortisone suppositories. Jan [ more ]
SolomonSeal Thank you for the response. I've not been able to find much info on diversionary symptoms. Other than seeing improvement from takedown, is there any other way to distinguish diversion from IBD caused pouchitis/cuffitis? [ more ]
Jan Dollar Or, you can look at it this way. Wringing your hands with worry will not change the outcome. It will only increase your stress hormones and make things worse. So, you may as well assume that this is diversionary and will improve with take-down. You have just as much chance of that being true as a worst case scenario, perhaps more. We all hope for a perfect surgical outcome with no complications. We don't always get what we want. If you hope for the best, while preparing for the worst you... [ more ]
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J-Pouch ForumsGeneral Discussion
Dilated last week and now trouble emptying
K ks1905
ks1905 Thank you for the replies. My emptying is getting better since 2 days ago. I went back to twice a day with flagyl and 1 Entocort in the morning, I'm also using the Calmoseptine ointment pretty liberally and adding Miralax to my coffee. I was just surprised by the emptying problem after the dilation because my other dilations everything worked so much better afterwards. My strictures aren't that bad but the GI keeps mentioning this home self-dilation kit, which isn't that appealing to me. But... [ more ]
mgmt10 Perhaps you have some inflammation/swelling there from the dilation itself....especially if he did it twice. Hopefully it will get better in the coming days. I do recall that happening to me as well after one of my dilations but it resolved itself. [ more ]
ks1905 Thanks Grace. I forgot to mention that I have (2) ulcers near the bottom of my pouch and I have some burning pain now when emptying so I'm guessing it is the irritation that you mentioning....or at least I'm hoping it is that. I recently tapered off of entocort about 2 weeks ago. Maybe the GI will put me back on it when he gets back on Monday. ugh...it messes up my sleep schedule. [ more ]
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J-Pouch ForumsGeneral Discussion
Attention Cleveland Clinic 90% surgery success rate poster."
JeffsmomJeffsmom
UjohnjC jeffsmom i to have a smaller small int so they gave me a s-pouch couldn't stretch it enough for jpouch [ more ]
Jeffsmom Derek, thank you. And good luck and best wishes to you as well. Your journey sounds long and painful as well. lots of hugs and prayers to you too! [ more ]
dtmack I have been following your sons journey. I truly hope you both get some good news and some peace. Prayers to you both. Derek. [ more ]
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J-Pouch ForumsGeneral Discussion
Advice on surgery scar
T tango9
ks1905 The plastic surgeon said that he could do a tummy tuck on me and that would fix most of my scar issues. Obviously my insurance company won't cover that ($8,000 surgeon fee) plus other costs; the insurance company will only cover the scar revisions. [ more ]
Spooky I had open surgery. Laproscopy was not an option as my surgery was an emergency. As a result, I now have a very long (about 10 inches) vertical scar down the midline from about 2 inches above my belly button right down to the pubic bone, and an smaller oval shaped scar where I had the stoma. I also have two smaller indentations - which I call bullet holes -- where I had JP drains. The lower part of the vertical scar is keloid and is pinker than the top part, but overall the scar has really... [ more ]
skn69 CT, Wait until you hit Andropause...they will take on a whole new shape! Oval becomes droopy/loopy! Just starting to see what the future holds for mine and it is not pretty... Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Lomotil
G GraceB
cbarts I take my 2 imodiums and 1 lomotil at the same time when i first wake up in the morning. I've been doing this since 2001 when I had my takedown surgery. Luckily this has always worked for me. I still usually go about 3 to 4 times a day. As far as the weight gain, I too am very thin. I'm 112 lbs and 5'7. I have always been very thin and I have an identical twin sister who is the exact same size as me with no health problems. People always suggest that I'm small because of my health. I hope... [ more ]
Scott F Imodium has a long half life, averaging over 10 hours, so it's eay to overshoot. Try to be patient with assessing the adjustments if you can. [ more ]
GraceB Yes Scott I did that the other night before I went to bed I still had to get up twice but it was better than getting up a few times. I took a Imodium this morning it seemed to help a bit when I got home I started having issues again so I took another Imodium and had lunch Now I will see what happens when I have dinner. by not taking anything I was in the bathroom at least 20 + times a day. So when ever I would eat anything I was in the bathroom half hour after. I even tried putting 1/2 tsp... [ more ]
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J-Pouch ForumsGeneral Discussion
pooping water
U UjohnjC
dgloria5 Never eat anything sugar free you will be going liquid crazy, like Scott wrote check it out. In fine print on the lable it has written warning can cause diehrea. [ more ]
Scott F If the candy was sweetened with one of the sugar alcohols (sorbitol or mannitol, usually) then that might have been responsible. Sometimes, though, it just happens. Sometimes we get ordinary GI bugs ("stomach flu") that give us diarrhea for a day or six. [ more ]
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J-Pouch ForumsGeneral Discussion
vomit
U UjohnjC
UjohnjC went to er was there 2 hours was 35 people ahead of me still so i left feeling little better dr out of town till wed haven't taken any comital oh imodium today just drinking water and had a yogurt not sure what to do [ more ]
CTBarrister A knotted up sensation coupled with watery BMs is a possible sign of a partial blockage. If these symptoms persist I would call Dr. and/or go to ER. I had blockages in the weeks after takedown - you are very prone due to possible adhesions and scar tissue and/or residual surgical swelling. I don't know what you have been doing diet-wise but I would not be eating big meals. Take it easy until you are a couple months out. People start feeling good and they get aggressive with their diet - and... [ more ]
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J-Pouch ForumsGeneral Discussion
New member (Low iron)
LincslassieLincslassie
Lincslassie Thanks everybody,I'm starting on liquid iron and will check it out to try and get hold of the chewable vitamin too,they advised me to take the iron with orange juice. Jane [ more ]
marz I agree with all above information regarding low ferritin. I also receive ferraheme infustions twice a year from a hematologist. It is very important to keep the ferritin levels above 100 (according to my dr.) I also wanted to mention a chewable vitamin I have been taking for 2 years for people with absorption problems. It is called forvia and available at http://www.inovera.com/forvia/ It has seemed to make a difference for me as far as keeping my ferritin levels at a decent level LONGER... [ more ]
Lincslassie I'm in the uk,I have an ibd/gastro team they sd to speak to them after the weekend I have a clinic apt in 3 weeks which seems a long time to me it's not like it's just going to get better on its own is it ? [ more ]
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J-Pouch ForumsGeneral Discussion
Had my Surgery
Andy1993Andy1993
Jeffsmom Andy, speaking from experience now. Stay ahead of the pain. Don't worry about the narcotics. As long as you are taking the,may perscribed you won't have a problem. Jeffrey has been on dialodid since Sept. Addiction is the least of your problems. You can't heal if you are in pain. I think Jeffrey was on all that stuff for about 8 weeks. He slowly got off of them. Because he is autistic, he may have had a harder time with pain management. He has sensory issues. But one day at a time. Give... [ more ]
SolomonSeal Hang in there Andy. I'm you're age (21) and know just how hard it is... expect all your muscles to be sore from compensating for your abdomen. And other muscles to be sore for compensating for compensatory muscles! The best thing for me was two things: A)walking. A lot. B) Family. They were there to make the pain more bearable. They also kept my musclesrelaxed with nice massages. Best of luck, buddy! [ more ]
Andy1993 I am feeling better today a head of the pain now so I am going to stay a head for a few days then try and ween off again. I had to take doubl the dose what my doc prescribed to finally kick it back. For some reason the bleed I had is really setting me back but just gotta take one day at a time and I am not worried about becoming dependent on the Hydromorph so it makes it easier to take it [ more ]
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J-Pouch ForumsGeneral Discussion
20+ bm
U UjohnjC
UjohnjC hope scope goes well was having a good day then got runs must of been sugar free candy i ate lesson learned [ more ]
mary beth So sorry to hear that John. Could it be your diet? Lily had a great day yesterday, from 24 to 10. Today 8 so far in 12 hours but I think after the good day yesterday she thinks she can eat any thing and I think that´s why she´s up again today. She ate a lot of things she probably shouldnt have, she doesn´t listen to her me! The other day I started giving her 2 Lomotil 4 times a day which is the max dose, maybe that´s why the improvement but she also snacked all day instead of eating just 3... [ more ]
UjohnjC mary beth well back up to 22 yesterday very frustrating [ more ]
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J-Pouch ForumsGeneral Discussion
Southern State Hospitals, GI and Surgeons
AllyKatAllyKat
golflady1119 Shands at the University of Florida in Gainesville is an awesome facility!!!! Had my J-Pouch surgery there in Oct and takedown in Jan. I would recommend them to anyone! [ more ]
Jeffsmom Hey folks, I did say that Cleveland was good. I'm did not know that Mayo had a facility down there. Good to know., but overall and in my experience, the healthcare with regular doctors, is not so great. They don't even carry malpractice insurance, which surprised the heck out of me! Chuck, I go to south Florida, delray beach. Jacksonville is too far north for me! Looking forward to getting down there next month if Jeffrey continues to do well and is off the narcotics. dianne [ more ]
Scott F I'm sitting in Mayo Jacksonville right at this moment (visiting my brother after surgery), and I can confirm that it's a first-rate hospital. OTOH I have no idea if they are excellent at J-pouch surgery or experienced at caring for difficult pouches. [ more ]
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J-Pouch ForumsGeneral Discussion
Little nervous going back..
V Virdent
Mysticobra I just work a shift but one thing I make sure I have is some wipes. Invaluable! Just don't stress out going back to work. I was overwhelmed with the welcome backs. Surprised. Richard. [ more ]
Jeffsmom Virulent, it should make no difference. Just pack your supplies and go to work. Just take a bit extra. My dad worked overnights when he was younger and he just packed a bag with him and did what he needed to do. I'm sure it will be difficult going back to work at first and I'm sure exhausting, but you'll make it. [ more ]
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J-Pouch ForumsGeneral Discussion
Abdominal Pain this late after surgery?
IsolationaryIsolationary
jipalmer I had adhesion removal at the end of January as well. I am still having good days and bad days. Sometimes I feel fine for a few days and then have a day full of pain and gas. Take it easy for a few days and hopefully you will get back to feeling well! [ more ]
Jan Dollar I agree with Scott. It is sort of difficult to compare anything to how things felt before surgery. Base your level of alarm on the severity of the pain and whether it gets better or worse. Plus, if there are other associated symptoms it is more reason for concern. Jan [ more ]
Scott F Everybody has a different idea of what "active" means. Were you doing sit-ups? Olympic weight lifting? (just kidding). In any case, I'd suggest you back off a bit and see what happens. Your belly has been altered, and "normal" anything is apt to feel different. OTOH, if it escalates or gets severe that's a different story. [ more ]
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J-Pouch ForumsGeneral Discussion
To those with thicker output...
rachelravenrachelraven
RWNC Too many carbs, fiber, and my period all cause me to be constipated. I find grape juice and laxatives help in short term but there seems to be a rebound effect where I end up even worse off a day or two later, so have found it is just better to wait it out. I find eating lots of fresh fruit and soft cooked vegetables and cutting down on carbs really helps if you can tolerate them. [ more ]
n/a Grape juice? My favorite variety - red wine, but that's more of a temporary fix. [ more ]
rachelraven Things I've resorted to: drinking a ton of water, few prunes, small Fleets, hot sitz bath relaxes sphincters and things pass, magnesium. [ more ]
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J-Pouch ForumsGeneral Discussion
Frustrated and Scared
MB mary beth
RWNC I understand your frustration! The first couple weeks post take down I had 20+ bowel movements a day, leakage, terrible butt burn, and felt absolutely horrible. None of the medications worked for me; it really just takes time for the body to adapt. Everyone is different but I found for me it was really more important for me to eat frequent small meals versus withholding food as this made my output very runny. This is still the case now. Also when you get into 20+ bowel movements even the... [ more ]
mary beth Thanks again EVERYONE, you have all been so helpful, I really don't know what I'd do without the support and suggestions I get here. Thanks Richard and Liz, I will mention the antispasmodic to her doctor. Torg, good luck with your son, I'll be thinking of you both. Keep me posted. [ more ]
mary beth Thanks for the replies. Liz, she has seen the surgeon and I was hoping he would have done an exam. I asked him about "stretching" but he said it was too soon which I didn't completely understand. He was not my daughter's surgeon but his partner and he kind of blew off our concerns and told us just to be patient. Seems like an exam would have been a good idea to me. Instead he wrote a script for Flagyl which now I kind of regret putting her on. I don't like the "just in case" idea of... [ more ]
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J-Pouch ForumsGeneral Discussion
s pouch
U UjohnjC
Karentree Not quite sure I'm the best person to answer that. When I had this operation back in 1984 I was 19 years old. The surgery was very new. My personal experience wasn't good. I was told at the time "things didn't exactly go as planned" - and after my take down in 1985 - I ended up needing to use a catheter to go to the bathroom. Quite traumatic at the time considering my age. But, hey, they say you're "cured" - so you run with it. Fast forward about 16 years...after years of "using the... [ more ]
UjohnjC hi karen i have s pouch also just had takedown 3/2 how was your first few weeks after takedown? [ more ]
Karentree I have an S pouch. I'm one of the first 25 people to have this "new" operation done in New York City back in 1984. [ more ]
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J-Pouch ForumsGeneral Discussion
How much can you drink in a sitting?
IsolationaryIsolationary
Spooky It really varies. With a loop ileo, you'll find that things go straight through you regardless. My output with the loop was always very frequent and very watery. Prior to having the loop I had an end ileo for about 2 years. The output was much thicker and more infrequent. Nobody told me there'd be such a drastic difference! LOL The point is, you do need to drink, even more so with the loop because you are potentially losing water through the ileo. You could keep a bottle with you and sip... [ more ]
Jan Dollar It gets better with time, as your small bowel adapts to absorb more water and take on the role of the colon. But, it takes time; 6-12 months. Even an end ileostomy will eventually adapt to absorb more water. But yes, the key is to sip throughout the day, not slam back large amounts of fluids. This is especially true in the first six months post op while you are adapting. Another suggestion is to not drink too much fliuds with your meals, so that your food will not "flush" out of your gut too... [ more ]
CTBarrister I have a J Pouch, not an ileostomy. However since having a J Pouch I need to drink regularly to stay hydrated. I drink 17 ounces of coffee in the morning with breakfast and then 12 ounces of Red Roobois tea every 2 hours during the day. I always take bottled water with me when on the road. [ more ]
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J-Pouch ForumsGeneral Discussion
thinking about getting surgery for uc
jeremiah johnsonjeremiah johnson
Scott F If you really feel like you need a phone call, let us know (though don't post your phone # in an open forum). Arrangements can be made through a private dialogue. [ more ]
rachelraven I consider mine a success. I had zero issues for 21 years, then developed an abscess/fistula. However, my pouch itself is still looking good. The bottom anastomosis narrows at times, necessitating dilations in the past 2 years, but overall, again, the pouch itself has always looked pretty good and functioned quite well. For twenty years, I was the poster child for excellence after J pouch surgery. [ more ]
TE Marie You have found the right place to ask questions. Something like 95% of j-pouchers don't have problems. This is a good place to ask questions about the surgeries. People generally go to support groups for guidance and after recovery don't frequent groups as often. There are many here who have recovered and lend their support for others that have questions. Ask a question or ten and get your discussion started [ more ]
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J-Pouch ForumsGeneral Discussion
corned beef
U UjohnjC
Scott F Remember that cabbage can be quite gassy, if that gives you issues. It's a perfect use of Beano. [ more ]
Jan Dollar I just ate my corned beef round dinner. Cooked it in the crock pot. Don't care much for the boiled potaoes/carrots/cabbage, so I roasted red potatoes, baby carrots and onions. We have it every year. No problems, including the Reuben sandwiches and hash from leftovers. Happy St. Pat's! Jan [ more ]
CTBarrister I am not a big fan of corned beef, but I have eaten it and had no problems. Typically I only have it around this time of year. As a kid growing up with UC, I ate it a lot as part of what is called "New England Dinner" - corned beef stewed in a pot with potatoes, carrots, and cabbage, and served with mustard. Funny story about corned beef: Many years ago I visited Schwartz's- the internationally famous purveyor of smoked meat in Montreal. I ordered and ate their famous smoked meat sandwich. [ more ]
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J-Pouch ForumsGeneral Discussion
Stabbing pain
J JOHNDUB
msh98991 ❤️
Jan Dollar There is no "time" for adhesions to become apparent. They form within the first few weeks of surgery, but they can cause symptoms at any time. Your intestines are in constant motion and all it takes for them to try to zig when they are tied into a zag position. I doubt that anything you take orally will have any impact one way or the other. But, just know that without a colon, there is no colon to "cleanse." No harm either, just saying... Now, if you are talking about a few days of a partial... [ more ]
rachelraven My pain was more than a decade post op, but my growing belly was the culprit. [ more ]
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J-Pouch ForumsGeneral Discussion
Is it really Butt Burn.... ?
FM Former Member
Former Member My point was..... rather than what we think it maybe..... is the itching, discomfort and/or pain, actually caused by tiny tears around or with the anus. From own experince, I'm guessing, a tiny open wound, scratch like, maybe more than one or many in such an area and exposed to the bile acids, either most of the day and during a BM, could be the actually cause of the dreaded butt burn.... rather than the diaper rash type skin condition I read of. When I've experienced the itching and burning... [ more ]
CeeeeCeeee My surgeon told me that extreme itching in or around the anal opening is caused by seeping or leaking of liquid b.m. even if we don't see it. Keeping the area clean and as dry as possible seems to relieve the problem. After cleaning the area, using a barrier cream of choice helps to keep the area clean and safe from contact with liquidy effluent. Being vigilant helps. [ more ]
Former Member If referring to me, no... no infection and no pouch or cuffitis; all is well, I was just sharing my thoughts and exploring opinions. [ more ]
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J-Pouch ForumsGeneral Discussion
How fast does a stricture develop?
dgtracydgtracy
dgtracy Thanks for the replies. I'm Def having smaller symptoms not as bad as before but it's there. I already have an email into surgeon so well see soon [ more ]
ks1905 I felt great after my dilation but about 10-14 days later small symptoms started to come back but not nearly as bad as before. I'm going for another dilation on Friday. My last one was about 2 months ago. Things are good with medications but I want to get off the Entocort and Flagyl. [ more ]
mgmt10 I had one that developed three weeks after takedown surgery. Had it dilated and it developed again about a month after that. Had four more dilations a month or so apart and then it finally stayed open. [ more ]
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J-Pouch ForumsGeneral Discussion
Pain -and lump?- at anus. Should I be concerned?
GN Gentle Now
Jan Dollar It is a matter of timing in regard to what happen when. Hot soaks help hasten the "ripening" process, where the abscess is walled off and the infection is in a pocket that can be drained. If it comes to the surface, breaks open, and drsins on its own, you need to keep up the soaks in order to keep it open and draining. surgical incision is mot always necessary. It just depends on how large and/or deep it is. You also do not want it to sit without drainage too long, or it can lead to a... [ more ]
Gentle Now Thank you all again. I have been reading all the other posts about abscesses people have experienced. It seems that, yes, no one has posted that antibiotics alone took care of things, nor is there ever just a simple resolution . :-/. a little good news? Antibiotics seems to have helped my frequency! I am 8 weeks out and have been going 15 times a day, but surgeon was not suspecting pouchitis, just thinking my body was slow to adapt. So I am really glad that this got me some antibiotics to... [ more ]
Jan Dollar Yeah, antibiotics won't heal an abscess, but can help keep it localized and heal any local cellulitis. Watch for fever and increasing pain. Hot sitz baths should help get this to improve. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Worth Worrying About or Not?
D DeathStalker
DeathStalker Well, it looks like it only occurs when I strain down there. Had those two episodes and then gone. Nothing. I'm guessing perhaps an internal hemorrhoid or something related. Major relief. I will mention it though next time I speak with my surgeon just in case. [ more ]
canlafre I am curious about how you are feeling? [ more ]
DeathStalker Odd thing is that I've used the restroom twice tonight and no blood. Not a drop. This is odd because with UC, when I bled, I bled continuously. With this latest episode, it's very sporadic. Either way, like mgmt10 said, probably can't hurt to just get checked out to be safe [ more ]
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J-Pouch ForumsGeneral Discussion
Gravity Smavity..... Gotta push!
MysticobraMysticobra
ccanepa456 This is exactly my problem as well. Even if its diarrhea I have to strain. I do have pouchitis and have been on cipro, but it started right after my takedown and has never gone away. My pouchitis is also handled with the cipro, so I rarely have diarrhea and don't take immodium either. So frustrating and has led to hemorrhoids and fissures for me! [ more ]
Ljz I am exactly one year post take down and have output all across the board- sometimes liquid, some formed, and lots in between. I do find when I have to push formed stool out that using my little squirt bottle - holds about 12 oz., with very warm water helps a lot. I have to refill it sometimes 3-4 times and usually wipe in between but it definitely help me release more stool without pushing as much. I'm sure a bidet could do same thing but this little bottle has made huge difference for me. [ more ]
Mark SD I've had the same issue since my 1992 j-pouch surgery and it's never been determined why. I was warned prior to the surgery that this could happen. I don't need to push too hard to get going but I always need to push. [ more ]
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J-Pouch ForumsGeneral Discussion
urinating
U UjohnjC
Shainy I had this problem after the jpouch surgery (stage 2) and also at reversal (step 3) after my j pouch surgery I suffered urinary retention and had to self catheterise for a few weeks. my surgeon didn't know why this was happening and neither did the urologist but it cleared up and I was able to pee normally again. recently I had the reversal and again I found it hard to pee. I think, in my case, its due to the pelvic floor seizing up from the trauma of the surgery and then at takedown because... [ more ]
TG Hi, In the initial stages (Post take down) it's all about training your muscle - this [ link http://urology.ucla.edu/workfi...xercises_for_Men.pdf ] exercise is for prostate associated issues but it all helps towards the same goal. It takes time. Hope this is something to go on. [ more ]
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J-Pouch ForumsGeneral Discussion
Post operative blockages
S srf
Jan Dollar Get up and walk as much as possible. Reduce the use of opiates as much as possible. Make sure they are monitoring your serum potassium levels (low potassium contributes to post op ileus). And of course, avoid abdominal surgery as much as possible! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Constant Anal Pain post op
IsolationaryIsolationary
Isolationary I had myself checked out after my pain got so bad I was writhing. It turned out I had an abcess from a leaky pouch that was pressed against my spine. I'm on heavy antibiotics now--Ciprofloxacin and flagyl(sp?)--as well as hydromorphone for the pain. I'm feeling much better now. [ more ]
Shainy I had quite a bit of anal discomfort after j pouch surgery. its quite common. I can't remember when exactly it stopped but I think it was uncomfortable for a good 4 to 5 weeks. when I had the 8 week mri pouchogram a small sinus was detected. im not sure if that was the cause of the pain but anyway it all cleared it in time and I had takedown last week (9 months after the j pouch surgery) [ more ]
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J-Pouch ForumsGeneral Discussion
How many out there got a J-Pouch only to find out later you have Crohn's?
E Evie
Evie Thanks for your responses ladies.....my son has Ulcerative Colitis as well....he was diagnosed at 7 years old and is now 15. His GI said sometime ago that she felt like he had Crohn's from the signs she saw in his stomach, but we have no "official diagnosis" as of yet. None of the Biologics worked for him, so we went back to the basics....Methotrexate. It finally got him in remission. I guess it was what his body needed. I have been on every imaginable drug for my Ankylosing Spondylitis and... [ more ]
rachelraven Similar to GinLyn here. I felt "off" all of 2012, and kept saying to the hubby that I wondered if I had developed Crohn's. Odd, I know, to say "gut feelings," but there they were. I felt like I had physically when in a UC flare: constant low-grade fevers, malaise, bloating. It wasn't so much that my pouch was bad or off, it was a full general sense thing. Then December 2012, I developed a perianal abscess that became a fistula. Also get strictures and narrowing at the lower anastomosis these... [ more ]
GinLyn Sort of. I have recently been reclassified as Crohn's (within the past 18 months), but there have not been any definitive signs of ulcerations in my small intestine. The reclassification is based on the number of very bad fistulas I have had over the past 5 years and a couple of other (self-reported) symptomatic things. My surgeon decided to reclassify me so that I would get faster attention when seeing new specialists & in case of emergencies -- plus her gut feeling that it was some... [ more ]
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J-Pouch ForumsGeneral Discussion
Taking VSL#3 DS On The Road
CTBarristerCTBarrister
CTBarrister So I found that Scott's suggestion worked really well. I packed ice cubes in a one gallon ziplock bag and placed them on top of the VSL#3 DS packets in my Artic Zone thermal bag and then stuffed the bag in my suitcase around 4:15 am. I left for Hartford around 4:30 am. Flight took off around 7:30 am and we landed in Tampa at 10:30 am. When I unpacked in Bradenton at around 12:30 pm the ice had barely melted, this despite 84 degree Fahrenheit temperatures in Bradenton at the time. I then... [ more ]
ks1905 You could also just buy the standard VSL-3 in Tampa for about $55 from a pharmacy. This way you don't have the hassle of transporting it. Up the dose of the standard VSL to the DS strength and you'll use up all of the probiotic while you are there for the short vacation. [ more ]
CTBarrister OK, thanks for the tip. I figured they will ask about the ice pack. Maybe it makes more sense to load some ice cubes in a ziploc. I will do that instead. [ more ]
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J-Pouch ForumsGeneral Discussion
Finding a Doctor in another country?
J Jpouch8888
GinLyn First step is to speak with your employer about recommendations and how to navigate the insurance system. Next step(s) would be to research through the insurance company their policies, providers, etc. And also check out sites such as Expatica for help and recommendations specific to your area. As soon as you can, go on google and search for local expat groups; also try FB. These groups are INVALUABLE in navigating your new country! We live in the Netherlands, so the system is different, but... [ more ]
CeeeeCeeee You might try contacting the Cleveland Clinic to see if they have the names of any specialists who live/work in the Frankfurt area and are familiar with J-pouches, etc. Prior to a trip to Asia I contacted a specialist at a major IBD center in California and elicited the names of colorectal surgeons in the area to which I was going to travel.....just in case I needed someone. Best wishes! [ more ]
Jeffsmom Perhaps speak with HR. you should have no problem finding quality doctors in Germany. If it's a new job with a completely new employer, than speaking to HR not such a good idea. Try google. You should be able to find a gastro person near where you are going. And if the information is not in English use google translate. Good luck with all! [ more ]
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J-Pouch ForumsGeneral Discussion
Long-term low-residue diet is going to kill me!
GinLynGinLyn
GinLyn Aw, man, I am SO sorry that I didn't get to reply earlier! Too, too much going on right now. Thank you all for your suggestions. Sharon, what you say about the differences with "real" low-residue diets makes sense. I guess mine is more the "so bland you will die of boredom" diet. I have gotten a sort of routine down that is survivable, but I really don't like it. Still cannot have more than 3 very small servings of ANY time of fruit/veg a day or I pay for it, big time. It stinks. Someone... [ more ]
Spooky Hi GinLyn, Sorry to hear about your predicament! I'm on a somewhat modified diet myself currently for adhesions. You sound like you have quite a few more restrictions than I do, but I do have a few suggestions. Can you eat avocados? The reason I ask is that they are great sources of omega-3 and potassium, are low residue, and are quite filling on their own. I usually mash or puree it up to make guacamole - which of course gives you a lot of flavour. I will often take an avocado, make guac,... [ more ]
n/a Sorry to hear about your situation, Gin. Sounds frustrating, indeed. Can I ask what the surgeon's explanation is for the issues that apparently resulted from the pouch advancement? Curious, as my surgeon as suggested a PA due to my fistula.... I'm not a long-term low residue dieter, but perhaps have a few ideas in addition to Sharon's. Instead of oatmeal, there are other hot cereals such as cream of wheat, and malt-o-meal (even chocolate malt-o-meal!), etc. Both with honey drizzled on,... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Pudendal Neuralgia/IBD/Nerve Injections
KelseyHey2308KelseyHey2308
KDelphi anyone else been Dx now with pudendal nerve injury or entrapment? I have tried so many thing sfor it and I hear surgery is very often unsuccessful.....I am on gabapentin (HATE it) and a low dose anti depressant and they are doing nothing...oxycodone w/acet. only helps a little and, thanks to druggies, it is very hard to get a high enough dose of them to do any good in OH....any ideas anyone? empathy to all [ more ]
vanessavy It was the first time I ever hugged a doctor. I got off the table and couldn't feel any pain or anything I am on Norco now but I have been battling C.diff and an abscess so my body hurts. Find out tomorrow if I formed a clot. Never ending drama! But I have had the lidocane injections, those are nothing and don't last long, they are just in the back with small needles. Real nerve blocks are about 5 inch suckers. Doesn't hurt though and was interesting watching it being done. [ more ]
TE Marie That's really interesting Becky's mom. They told her it's hypersensitivity from the operations and dropped it. I was told it must be adhesions and am still on Norco. At least these other ladies have doctors that are trying to do something to get rid of the pain! Vanessasavy and KelseyHey please let us know when you receive help so we can seek the same. Take care everyone. [ more ]
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J-Pouch ForumsGeneral Discussion
Consistent Churning/Noises
JD Jeff D
jipalmer Hey Jeff- your symptoms sound similar to mine. Constant "flip flopping" is what I call it, when I eat, when I don't eat, all the time. And towards the end of the day, after I've eaten my multiple small meals throughout the day, I get this discomfort in the lower left part of my abdomen that is just indescribable... I feel so full and uncomfortable no matter what I eat. I was dx with abdominal adhesions which were causing bowel obstructions back in December and the surgeon said once they... [ more ]
ks1905 I went for an MRI to check for adhesions. Which they did not see but the GI said it could be just the way my body(organs) were positioned at the time of the MRI that hid the adhesions. They can also find them surgically, many times they find them during the take-down surgery and remove the adhesions. I had a scope done and they saw the stricture and they dilated it. I've been good ever since (knock on wood). I feel better and all the noises went away....guess I was getting backed up because... [ more ]
Jeff D I've had my j-pouch for just over 2 years. I haven't been on any antibiotics since I was treated for C-Diff in late January. I was just checked for pouchitis 2-3 weeks ago so I'm hoping it's not undiagnosed. I don't believe I've been checked for an abdominal adhesion. How is this done? Can it only be done by a GI doctor? How is a stricture diagnosed: through a scope, CT scan, etc? [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
1st surgery tomorrow
S SwollenColon
jipalmer Good luck! Will be praying for you. I had mine done in one step ten years ago so I don't have advice specific to your surgery tomorrow. BUT- I did just have adhesion removal a few weeks ago and definitely walk around as much as you can...helps with the gas. Also, make sure they ween you off the pain pump sooner rather than later and get you on oral pain meds. This last time they kept me on the pain pump until the day before I left and I had horrible withdrawal symptoms when I got home. Just... [ more ]
mgmt10 Walk around a lot after surgery. Learn as much as you can about caring for your ostomy from the nurses while you're there in the hospital. One thing I found exremely helpful was having a home care nurse come to my house for a few visits after I got home. Check with your insurance company. I think I was covered for five visits. Take one day at a time and you'll be fine.....good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Suggestions on getting Insurance to Approve VSL3-DS
K ks1905
Mountain Baker I couldn't get my insurance to cover VSL #3 DS so I applied to NORD and have been getting it for free for 3 years. I'm on disability but my husband works. We are middle-class but still qualify for assistance. Theresa [ more ]
ks1905 But my insurance company has no problem paying for Xifaxan or Entocort, each cost $1,700 a month. I was told that if I did get VSL-3 DS approved that it would be a $50 copay which is what I pay out of pocket for VSL-3. So I'd like to try the stronger VSL3-DS version. The way I see it (which the insurance company doesn't care about) is that it is a chance to get me off the expensive antibiotics, steroids, office visits and expensive scopes. [ more ]
Scott F I wish I'd been fighting a high copay. Several insurers have stopped covering it at all. At full retail (which has fluctuated at my pharmacy), the maximum dose of 4 packets/day adds up to $7,000-$8,000 per year. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Are PSA Levels in Men with Pouches Higher than Normal?
NYC GooglerNYC Googler
NYC Googler With a PSA hovering around 2.0 I can understand why you would reject his hypothesis. Thanks, Jeff [ more ]
Bruce D My PSA value has been below 2 until recently when, after a three year interval of no tests, it was found to be 6.0. My urologist put me on a four to six week schedule with Cipro and another try at PSA returned a value of 1.9. I experienced no symptoms or concerns about any problems such as a bacterial infection or prostatitis. I have had my pouch for 15 years and my age is 81. I would dispute any claim related to pouch proximity as a cause of an elevated PSA. It doesn't make sense. [ more ]
NYC Googler Hi Jan, Good to hear from you, it's been a few years, glad to know you're still out there offering your excellent wisdom and support. I agree, any surgery that results in the prostate being regularly exposed to inflammation could result in the same elevation of PSA. Jeff [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
VSL causing diarrea?
MB mary beth
mary beth Thanks Scott. I am REALLY hoping the VSL is the problem and not a coincidence. I gave her half a packet of VSL this morning before I thought of it and the diarrea continued most of the day. I started giving her Citrucil from a recommendation here and it seems to have slowed things down a bit without the bloating and gas like Metamucil. Also, her stool has started thickening this evening and has turned more brown which hopefully is a sign it was the VSL. I just hope much that´s the case as... [ more ]
Scott F It's certainly worth stopping the VSL for now to see if things get better. Not everyone tolerates it equally well, and it's not a critical part of her care. Jeffsmom, VSL #3 is a high-potentcy probiotic with six beneficial bacterial strains. It's been shown in clinical studies to help prevent pouchitis. Its single-strength form (powder or capsules) is available over-the-counter, and its double-strength (DS) form requires a prescription. It's expensive. I use it at the maximum dose - 4... [ more ]
Jeffsmom What's VSL? Sometimes in see this acronyms and have no clue what they are. [ more ]
See all 3 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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