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J-Pouch ForumsGeneral Discussion
New Connecticut GI
Grieving Old pouchGrieving Old pouch
CTBarrister Because I am a soldier on the battlefield between insurers, insureds, third party claimants and Doctors, I can say there is a lot of truth to what Scott says. There is an "us against them" mentality that often pervades on both sides, and since I am one of the few attorneys who is often on both sides, I get to see it and hear it in the flesh. Doctors are frequently spoken about in very unflattering terms based on reputations that they have developed from any of a number of criteria, including... [ more ]
Scott F The insurers' practices vary, but they often behave horrendously toward doctors, in terms of abusing their time, challenging their integrity, and undermining their professional judgement. If they actually served as a thoughtful, qualified second opinion things might be different, but the insurers' motives tend toward the corrupt, and their methods are unspeakable. I'm not at all surprised that doctors who can fill their practices without exposing themselves to such unpleasant behavior jump... [ more ]
CTBarrister I went to see Drs. Gelernt, Gorfine and Bauer (none of whom accept insurances) and endured long wait times in their office and it took months to get appointments. However, these 3 were/are among the best of the best in NYC along with Milsom who, from what I heard, also does not deal with insurance. I believe it is a combination, they don't have the time to deal with insurance and perform surgeries as there are only 24 hours in the day, AND they want to make money after they pay the... [ more ]
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J-Pouch ForumsGeneral Discussion
Flagyl ALREADY? Advise Please!
MB mary beth
ks1905 The output of the Loop ileo doesn't give much of a clue on what to expect the output of the j-pouch to be after the take-down. I'm a good example of that, I only need to empty my pouch 3-5 times a day but when I had my loop ileo they didn't want to let me leave the hospital because my output was so high. They were even considering doing my reversal before releasing me (after only 2 weeks), they tried loperimide, lomotil, tincture of opium and Metamucil but nothing worked except for time for... [ more ]
Spooky Mary Beth, Hopefully this is a sign that things are looking up! I also had very watery output with my loop ileo no matter what I did, and I was also worried that I would have the same experience with the pouch, but it's mostly been fine. In fact, these days my stool can actually be TOO thick at times and I have to occasionally resort to prune juice to help get things moving. Just food for thought! In general, though, frequency starts to go down after 6-8 weeks post surgery, though in my own... [ more ]
mary beth Thanks all! She is already on the max Imodium, 8 per day. I didn´t feel it worked when she had her ostomy bag either, she always had very high and liquidy output but the surgeon thought it would be better after takedown. I picked up the Flagyl script but am going to hold off because I too feel it´s a last resort thing especially since the scope was negative for pouchitis and she has no other symptoms besides frequency. She is pretty much pain free most of the time and shes staying hydrated. [ more ]
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J-Pouch ForumsGeneral Discussion
question regarding contacting Dr.
N nbm
Jaypea Pick up the phone and speak to his assistant. That person will probably be able to steer you in the right direction immediately. [ more ]
Jan Dollar I agree 100%. I prefer emails too. No worry about the message getting "lost in translation," or screwing around with phone tag. But, that only applies when there is an ongoing relationship. I would not expect a doctor to even remember who I was after 10 years. But, no harm in putting it out there. Jan [ more ]
nbm Thanks Jan. I will figure something out. I personally prefer emails to phone calls--they seem so much more efficient and less time consuming for both people involved when the question is simple but I understand that it is different in the medical community. [ more ]
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J-Pouch ForumsGeneral Discussion
VSL#3 DS - taste
C clouwho2
Jeff D I just started taking VSL DS last month. I tried it once with water and hated the taste. I now mix it with cinnamon applesauce and that works really well for me. [ more ]
Lesandiego I couldn't stand the taste either, so my doctor said to take any probiotic (regardless of research studies on VSL). I have taken Align (in capsule form) for almost 2 years with only one episode of pouchitis (which was probably related to my taking Advil at the time anyway). [ more ]
clouwho2 ❤️
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J-Pouch ForumsGeneral Discussion
bidet
S scallop
dgtracy wow, everyone has those expensive coco and totos... i have a 65.00 Neo 320 that i bought off of amazon, has cold and hot water. you just plumb the cold water line like you do all bidets then it supplies the materials needed to run another smaller line to the hot water off your sink. depending on the location of your toilet and sink it may not work if they are say across from each other, but my toilet is 3 feet to the left of my sink and the line is hidden nicely behind cabinet. [ more ]
betsaronie I also second the CoCo. I bought one that was $295, been using it for 3.5 years now. It's kinda hard to clean under it without removing the whole thing, but i've gotten used to that. I have the heated seat model which is lovely in the winter. I've used a cheaper one, that was just an additive to the back of the toliet seat, no heated water, but it was still heaven when I was on vacation and away from my CoCo. It was either a Luxe or an Astor. both of which are on amazon for $30-$50. [ more ]
CeeeeCeeee My Toto Washlet is about 12 years old and going strong. However, I am the only one that uses it and I'm very careful not to abuse it! It is worth every penny I spent on it! [ more ]
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J-Pouch ForumsGeneral Discussion
Setons, recovery, and more testing, yay...
betsaroniebetsaronie
TE Marie The booklet my surgeon gave me before my surgeries said cuffitis affected only 4% (or some other ridiculous percentage). My dad survived a surgery that his surgeon said only 10% survive. My husband wanted to rely on a 25% prostate cancer risk to not have the biopsy that lead to his diagnosis performed. I convinced him that playing the percentages isn't something reliable to do when your health is concerned. He had prostate cancer and it required it's removal or radiation. Radiation could... [ more ]
Scott F For what it's worth, you can't really know that his lymphoma was caused by the biologic, though I don't blame you for the suspicion. I have a good friend who developed lymphoma at 25. Sometimes it's just bad luck. [ more ]
betsaronie Thank you ladies. I really appreciate it. I think i was on the super emotional train and just needed to hear that it can work out. I have been wanting to see a therapist, lots of guilt and health and body issues and my poor boyfriend can't keep up with me draining all of it on him. I'm lucky to have a great support team in my friends, family and my boyfriend. His brother has Crohn's so he has a unique understanding that most "normal" people don't have. Having said that, part of the reason... [ more ]
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J-Pouch ForumsGeneral Discussion
first meal
U UjohnjC
Annikki I would avoid the OJ. Oranges cause me severe butt burn. [ more ]
Virdent A word of caution on the orange juice, some people experience extra butt burn with acidic things like some juices and tomatoes..but hey I guess you can try everything for your self but I'd hold off on it for now. =P [ more ]
CeeeeCeeee I agree with Marianne! Keep it rather simple. If a particular food doesn't work for you at this stage, stop eating it for awhile but try it again in a few weeks. At first, for me, orange juice, was problematic. Later on.....no problem! Best wishes! [ more ]
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J-Pouch ForumsGeneral Discussion
Dilation
Deanna6Deanna6
JeffDC The symptoms I had when I knew the stricture had appeared were multiple, back to back bathroom trips with very little output. The only way I could get decent output was with a good bit of straining and twisting on the throne. I have had two dilations, I think, and a stricturoplasty. The doc recommended I purchase a dialator, and gave me the diameter so I could order the right one. I have it, but have not used it in several years. The first several weeks after the dilation were wonderful. But... [ more ]
rachelraven Sometimes things get better, a few times they got way worse (nicked up some inflammation, and steroids put it right). This time, kinda about the same, but wasn't having much issue prior, even though the doc thought it necessary to do. [ more ]
mgmt10 I had a stricture develop shortly after my takedown surgery. I had to have it dilated a total of 5 times before the scar tissue stopped forming and it stayed open. My surgeon had me come in once a month and just did it digitally in his office. [ more ]
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J-Pouch ForumsGeneral Discussion
takedown tomorrow
U UjohnjC
Jeffsmom Marybeth, I feel your,pain! My son listens to nothing I say regarding food! she will,figure out soon enough that stuff is going to make her sick. Something my son is FINALLY understanding, lots of tiny meals. Eat something every 3-4 hours. Before my son lost is large intestine, he was almost 300 lbs., about 100 over weight. The doctors even made him lose weight before they would do his surgery. Long story short, while he had is ostomy and even after his take down in Sept. Would eat in huge... [ more ]
UjohnjC I'm starting on full liquids today little nervous waiting on oatmeal and yogurt and cup of coffee doubt i eat it all I'm hoping it all goes well i get to go home tomorrow miss my girls they won't come up cause last time my 14 year old got c diff then she was in another hospital not fun for my wife or anyone i have 2 friends w pouchs and they say they can not eat french fries sweet potato fries they can though all trial by error though good luck [ more ]
mary beth Im sorry to hear you had a little set back but glad you´re feeling better now. Lily is doing better today. She was in a lot of pain yesterday and she was ¨starving¨ so the surgeon actually let her start food last night which I was skeptical about since it had been less than 48 hours. And instead of eating something bland as I suggested, she insisted on mac and cheese and then snuck some of her sisters french fries. I can´t follow her around forever so I feel she´s gotta learn on her own what... [ more ]
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J-Pouch ForumsGeneral Discussion
Who would be more likely to survive on an island?
F fightUC2
TE Marie J-pouch, even if stranded with nothing. Lots of good in coconuts and I think I'd be able to stay hydrated. [ more ]
skn69 Give me a tube and enough lube (or coconut oil and a straw) and my k pouch would win hands down...not that I am planning to try it anytime soon...By the way, you didn't mention if it was a nice, warm tropical island or a cold northern island...I prefer the warm and sunny kind given half a choice. I understand where you are coming from...the fear and terror will get to you pre-op...mind games (or mental gymnastics) are very helpful in allaying the fears... good luck Sharon ps...you didn't... [ more ]
Jaypea If there were supplies to start an IV (jelco and tubing) you can use coconut water instead of saline. It is sterile and can be infused directly into a vein. i do prefer my coconut water with a little whipped cream and rum but hey, in a pinch, the plain stuff will do. [ more ]
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J-Pouch ForumsGeneral Discussion
Interesting Article on Microbes/Probiotics
ATXGuyATXGuy
Scott F ❤️
Jan Dollar Very interesting. For me, the most important take-away is the fact that many probiotic makers really do not truthfully advertise what their product can do. The evidence is weak, but they make a big deal of it. The second thing noted that I appreciated was the fact that nobody really knows which probiotics are useful for any particular person. This is why there are no simple answers, and why things change every time you take antibiotics. The article does a great job showing what a huge task... [ more ]
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J-Pouch ForumsGeneral Discussion
Medication question
JeffsmomJeffsmom
Jan Dollar Dr. Remzi is pretty much top dog in regard to pouch salvage. He would also be the top doc for dtermining whether there is enough small bowell for a redo. It only takes 6-12 inches, and the normal length of small bowel is 15-20 feet, more than enough for 2-3 j-pouches. But, there are individual variances, and if he had some small bowelresection the first time, that would make a difference. The more you can get Dr. Remzi's consulting opinion, the better. Jan [ more ]
Jeffsmom Thanks everyone for your input. Very helpful. This is a surgical complication. There is a micro tear that caused the abscess/fistula. The problem is, no one can find it. And no one seems to know how to fix it. in the call yesterday between my surgeon and Dr. Remzi, it was discussed and some ideas were tossed around but they may not be viable in my son's situation. He does not have enough small intestine to just make a new pouch. Also, to try and plug up the tear, they have to do it from the... [ more ]
Jan Dollar Prednisone, biologics and the like will not heal fistulas that are simply a result of surgical complication. Only if they are due to IBD, will these drugs help. Prednisone is sort of a dangerous proposition when infection is involved. The trick is knowing if this is IBD related. But, if the leak is at the suture line, it is most likely a complication, not IBD caused. I am not trying to dash hopes of other treatments. You should ask about them. But, I did not want you to have false hopes in... [ more ]
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J-Pouch ForumsGeneral Discussion
How do we PM?
LambiepieLambiepie
Lambiepie Got it. Thanks! [ more ]
Scott F There's a rectangular "Dialogs" button near the top, right corner of the screen. Clcking that will show you all of your dialogs. [ more ]
Lambiepie Thanks, Scott. Can you tell me how to view the current conversation? I PMed someone but don't know how to view her response. When I clicked on her name, then "start dialog," it would only allow me to post a new PM. I am computer illiterate anyway - this is confusing to me! [ more ]
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J-Pouch ForumsGeneral Discussion
Flare up after surgery?
DB Dr. B
Spooky You could have cuffitis as well (or pouchits and cuffitis as they can occur at the same time), which would be a more likely explanation for bleeding. You can still have UC flares after surgery. These are usually in the form of cuffitis, which is literally UC in the area of the rectal cuff that is retained after surgery. The likelihood of developing cuffitis may depend on the amount of cuff that is retained or the severity of your UC prior to surgery. But even though the affected area is... [ more ]
Scott F If the Cipro is just a year or so old and hasn't been in extreme temperature or humidity is should be completely fine. [ more ]
Dr. B Thanks Marianne. I plan to call Dr in morning. Anyone know if you can take cipro that is right at 1 year old? [ more ]
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J-Pouch ForumsGeneral Discussion
new to the jpouch
J joey_rock
Gentle Now Wow Strange! You are already down to 4-6 per day? That's wonderful! I had my takedown around the same time as you (I remember because I had to pack my wound for the first two weeks and was intrigued that you didn't). I'm still at 12-15 day. Are you taking any meds or do you have any other suggestions to share? [ more ]
rachelraven I lost weight pre-surgery, and immediately post-op (I'm barely 5'2", and left the hospital around 88lbs). But I gained weight fast with my loop ileostomy. I was back up to about 100lbs at takedown. By my mid-20s I was probably 110lbs, on average. Thirties, around 120... Now, in my "older" years (40s), I have the opposite issue! lol I'm the highest I've ever been, non-pregnant, at 133lbs. I do know some con't to battle low weights, but I'm pretty sure most don't eventually at some point after... [ more ]
Hoping I had my takedown surgery in 2014. I was in the hospital 4 days and as soon as I got home went back with a raging UTI. I guess that happens to many of us. It has almost been a year and I am still learning. I have found that potatoes, bananas, rice and yogurt are my friends. It is different for each person. On good days I have 6-8 bm's sometimes less sometimes more. I lost 30 pounds after surgery. Food just did not sound good or interest me at all. I am just now starting to have a better... [ more ]
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J-Pouch ForumsGeneral Discussion
Remicade
H Hoping
Hoping Thanks for the information everyone. It makes me feel better to know that you have not had any major problems with Remicade. Ready to give it a try. [ more ]
Andy1993 I am currently on ramicade. It is an expensive drug but if it works it works! I am a nursing student and been in the ER and a nursing home and I didn't get sick once even though I was exposed to ill patients. There is also a pneumonia vaccine you can get I believe it is every three years and your annual flu shot. It does make you more susceptible to any infection, but you gotta see if that out ways the benefit the drug does for you. [ more ]
mgmt10 I was on Remicade for a while when I had uc. I never had any ill effects from it. Never got sick the whole time I was on it. It stopped working and that's when I stopped it and had surgery. My mom has been on Remicade for 10 years now to treat her RA and it's been a God send for her. She's not had any issues at all. She started it when she was 73 and now she's 83 and her bloodwork is always perfect. [ more ]
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J-Pouch ForumsGeneral Discussion
out of surgery
U UjohnjC
UjohnjC up early hard to sleep in hospital had small bm last night water with few farts stomach still in pain walking around hospital a lot go on liquid diet today to start not sure if i can eat later peace all [ more ]
mgmt10 Try to walk around as much as you can. The nurses will start bugging you to get up and walk and it's really good to do so. It helps wake up the bowels. Hope you're feeling ok! [ more ]
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J-Pouch ForumsGeneral Discussion
Cholestyramine and cuffitis
M Madi78
TE Marie My local GI said he'd rather I not use it because it binds things so much it might hinder the medications I take such as for my thyroid and antidepressants. I have chronic cuffitis and thought it would help it by neutralizing some of the acidity flowing through. I don't like your doctor's attitude! You are the one experiencing the reaction not your doctor. If you are not benefiting from using it then stop using it. I haven't seen much discussion about it's use in this support group therefore... [ more ]
Jan Dollar One way to find out for sure is to stop it for a few days and see if the symptoms resolve. I suppose an inactive ingredient could be causing irritation. Maybe a different brand or formulation would work better, like Cholestid pills. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium Timing Question
ATXGuyATXGuy
Catinthehat Interesting. Imodium has little effect on me. Certainly not that much. I often take 2 before meals and never have a problem with it slowing too much. For me, even 1/2 a beer will cancel out the imodium effect. [ more ]
ATXGuy I drink quite a lot of water and, these days, very little alcohol. While I quite enjoy alcoholic beverages, since my takedown I haven't really felt like drinking much, so I've decided to listen to my body on that count. For reference, at the rehearsal, I consumed two margaritas, with four 12 oz glasses of ice water, with regular water during the day beforehand. At the wedding, I consumed three drinks (one beer, two mixed drinks) and six glasses of water, from 12-16 oz depending on the... [ more ]
Scott F Is it possible that you're drinking less water (and/or more alcohol) at these times? In any case, if you add more water to the mix you might get a better result. [ more ]
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J-Pouch ForumsGeneral Discussion
Meta-mucil
G GraceB
Jan Dollar Unfortunately, the best advice is regarding the fact that there is no perfect diet or "best" medication/supplement to have optimum function. One reason is that results vary individually. Another reason is that we each have our own priorities in regard to what is essential, important, nice-but-not-necessary, and unimportant. There are intolerances and dislikes That factor in. This is why trial and error is a big player, and what you think makes sense may not work at all, or even make things... [ more ]
GraceB Thanks Jan you and Scott and a lot of others always have good advice which I love. It just so wonderful that when a question goes out there are so many that are able to answer and help one another. Thanks again Grace [ more ]
Jan Dollar I don't have a lot of answers. For myself, I preferred to take the maximum amount of Imodium and not limit my diet in a big way. Right from the get-go I ate all sorts of vegetables, just limiting the amount in each meal. One thing I can say is that Imodium and lomotil will likely work best when you take it on a regular basis, rather than just occasionally. That way, there is some in your system all the time, instead of big peaks and valleys of blood levels. It takes a long time for your gut... [ more ]
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J-Pouch ForumsGeneral Discussion
Better after Take Down
MB mary beth
mgmt10 She will feel better after takedown. It may take a little while while she heals but things will improve. I had a very tough recovery after my first step surgery. Basically for those four months I felt like I got hit by a bus. I couldn't gain weight and my ileostomy ran like a faucet. That takes a lot out of a person. Once I had my reversal, things greatly improved. The weight came back on (and then some!) and I had much more energy. Oh, and the mucus is totally normal (even with some blood)... [ more ]
rachelraven The output from my disconnected J pouch was not crystal clear, and at first would be tinged with pink. It settled into the light tan mucusy color that is indicative of normal bowel mucus. It never had an odor. I was 19 when I had my surgeries, but I never had stomach pains, and was ravenous after, and gained back my weight pretty easily. Never needed Immodium or Metamucil. I have a suspicion some people have longer small bowels allowing for more absorption. However, I never had stomach pains... [ more ]
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J-Pouch ForumsGeneral Discussion
Advil
JD Jeff D
mgmt10 I have no problems taking NSAIDs with my j pouch. I don't take them daily but Advil is usually my go to pain reliever. No issues what so ever. Just like anything else....everyone is different. [ more ]
Spooky tulsamom, I think it's like anything else - we all have different tolerances. Some of us may be more sensitive to the affects of NSAIDs than others. Also, I would imagine if you have taken high doses in the past, you might also be more sensitive. As for me, I seem to be able to tolerate NSAIDs, but then again I have never taken high doses nor been on them for an extended period of time. Currently I may take no more than 4 to 6 tablets per month of Advil, if even at all. I typically use Advil... [ more ]
tulsamom I am surprised to hear so many people have taken NSAIDS without problems. I'm also extremely glad for them that they didn't have the effects I did when took them. The very few times I risked it back in the early 2000s I had a bad pouch reaction. So I stay away from them like I would from a mediation that I am allergic of. I've been able to get a narcotic RX for the few times I was in severe pain, like from dental work, because of my reaction to NSAIDS. Otherwise I use heating pads and ice... [ more ]
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J-Pouch ForumsGeneral Discussion
level of physical activity before with UC and after laparoscopically j pouch surgery
F fightUC2
Annikki I didn't have a choice. I has acute bout of UC that was severe and was on deaths door. After 16 years with my pouch I was just as or more so active. I work out 4 times a week and walk daily up to 10km. [ more ]
Scott F Yes, *successful* J-pouch surgery is much better physically than poorly-controlled (and uncontrollable) UC. That's not really the right question, though, IMO. In order to have successful J-pouch surgery, you had to *risk* unsuccessful J-pouch surgery, and that's no fun at all. Furthermore, if meds could control your UC, the right question, I think, is if J-pouch surgery is better than well-controlled UC. Most of us, I suspect, would prefer to have skipped the surgery if things could have... [ more ]
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J-Pouch ForumsGeneral Discussion
Moong Daal
I iHateColitis
Jan Dollar Beans and lentils may have opposite effects for many, but not all. They each contain unique protiens and fiber that you will have variable tolerability as an individual. To me, there is no difference. The main factor is the amount. Too much of either causes gas and urgency. in moderate amounts, they are thickening. Jan [ more ]
skn69 I consider lentils to be a form of plaster...they litterally bind everything up in my gut (sometimes not such a bad thing) but do cause some gas...I eat them a tablespoon at a time depending on whether or not I need to be social or not. They are very healthy, full of good, bioavailable iron and mix very well with Vit C (try using tomatoes, potatoes or other veggies full of Vit C)...There are 3 colours, red, yellow or golden and green. Not sure if the color changes anything but the red seem... [ more ]
iHateColitis Thanks Jan. But then what is the difference between lentils and beans? Why do beans have the adverse effect? [ more ]
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J-Pouch ForumsGeneral Discussion
Seeking Forum for AMD Age-Related Macular Degeneration
JimInMaineJimInMaine
Jan Dollar Jim, I hope you get some useful info. For something as common as AMD, you'd think there would be loads of discussions boards out there. I suspect that since treatment is limited, there is not too much to discuss. I did find this one, but you probably already ran across it: http://www.visionaware.org/for...neration-community/1 Jan [ more ]
JimInMaine Hi again Jan — I'm replying to you here as well as you had the grace to reply to me in both threads. I have signed up for the mail-list at the MD Support website which is purportedly the "venue" for the most active group discussion. Though, so far, my impression is that the site and/or its mail-list are not nearly as active and dynamic as is the j-pouch. The MD Support site does contain a lot of information and good links so will be a very good resource. I'll try to remember to come back... [ more ]
Jan Dollar I posted a reply to your other post. This was the best link I could find: http://www.mdsupport.org/support/ Jan [ more ]
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J-Pouch ForumsGeneral Discussion
10 days post takedown difficulty emptying
S Shainy
Jan Dollar I have trouble getting up from a low toilet. I would rather just have a low stool for putting my feet on rather than trying to get up from the low toilet. I love my higher toilet. Jan [ more ]
CeeeeCeeee A lot of my friends (we are over 70 years old) have installed high-rise toilets in their homes for ease of standing up after using them. I hate them because I do so much better emptying when sitting (closer to a squat) on a low-rise (regular) toilet. For that reason alone, I'll never install a high rise toilet in my home. I have installed grab bars and they serve the purpose of helping those of us who need help standing! [ more ]
mgmt10 Shainy, Mine was at the anastomosis site. [ more ]
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J-Pouch ForumsGeneral Discussion
Eye Problems 6 yrs post op
K KDelphi
JimInMaine Originally Posted by Daffodilly: ...<snip>....I always wondered if the eye problems were from the UC as I learned the eye is an area that requires much nourishment/vitamins and I was practically malnourished for years due to UC. Just a guess. Hi Daf — That's an interesting line of thought. I also had long periods of extreme anemia, electrolyte shortages and the like. It's a pretty good bet that such "malnourishment" could have caused, or initiated, damage to my retinas. I wonder if... [ more ]
JimInMaine Originally Posted by Jan Dollar: I did some looking and you are right. Not much out there. Have you checked out the links here...<snip>.... it seems to have more than any other site I saw. Hey Jan — Thanks. I had blown through that site but you encouraged me to re-investigate. It's funny: the main group activity is an old-fashioned mail-list. I've subscribed and await the arrival of the first digest. Gotta say, it's been a few years since I've done the mail-list thing. There is a bunch... [ more ]
Daffodilly I have had the J-pouch for 5 years. I developed a problem in my right eye a few months ago; inflammation and fluid filled cysts on the macula. It makes everything look very distorted. I have had steroid drops and three weeks ago, a steroid injection in the eye. I have some improvement since then. I was diagnosed with dry macular degeneration when I was emaciated from UC. I always wondered if the eye problems were from the UC as I learned the eye is an area that requires much... [ more ]
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J-Pouch ForumsGeneral Discussion
Is there an explanation for this??
dgtracydgtracy
dgtracy I wanted to come back to this and say that after the dilation zi could go to the bathroom a lot easier. I was on antibiotics for some time after the dilation and recently ended. After ending them a few days my stool has been pretty loose and still likes to keep me going alot in the evening hours. Gas is a big problem right now. Trying to get a hold on it. [ more ]
AllyKat reconnection was only a few weeks ago. It sounds like your system needs some time to adjust. [ more ]
dgtracy Allkat this was my assumption as well. I am hoping with everything I have that mondays dilation will at least give me some answers. I'm losing my mind trying to deal with this again. I have a bidet and have not tried to use some water for that yet. Maybe I'll try. The idea is a bit uncomfortable though. [ more ]
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J-Pouch ForumsGeneral Discussion
way to help with gas when its already there and producing ?
dgtracydgtracy
dgtracy Thanks jan I believe your right. [ more ]
Jan Dollar Once it is in there, all you can do is get it out. don't slow things down. I would say the Moonpie was the worst offender. Between the very high sugar content and lord knows what else they put in there, you really put your gut to the test. I always tolerated grilled cheese fine, especially aged cheddar, not American cheese. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Looking for a GI in San Diego
N Nicki
boy's mom Dr. William Sandborn at UCSD. He came from Mayo and has seen dealt with pouches. He is a big researcher so not always in the office. [ more ]
CeeeeCeeee There used to be members of this forum who lived in San Diego and highly recommended the doctors they had. Maybe you could run a search of previous postings. [ more ]
Nicki Thanks, CeeeeCeeee. You're completely right, I've already had one surgery with my new surgeon, Dr. Remzi. It was great, first surgery I've had with no complications. The problem is, I live in Encinitas, CA and Dr. Remzi is in Ohio. I'm looking for a doctor closer to home for when things inevitably come up and a trip to Cleveland isn't practical. [ more ]
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J-Pouch ForumsGeneral Discussion
Phenergan tongue
LRBLRB
LRB I do use Zofran mostly, but most days it isn't enough and I need to add Phenergan as well. I also use Reglan sometimes, but that isn't good for long term use, so I tend to save it for a last resort. Thanks for the suggestion! [ more ]
Jaypea Have you tried Ondansatron? [ more ]
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J-Pouch ForumsGeneral Discussion
zinc oxide allergy?
FL Fight like a girl
Jaypea Back in the "old days" working with premature babies in ICU we used to use egg whites on their excoriated little bums. Just make sure you don't have an egg allergy! [ more ]
Spooky Perhaps a silly question, but have you ever had allergy testing to confirm a bonafide allergy to zinc oxide? The only reason I'm asking is that it may not be the zinc you are reacting to, but perhaps one or more of the other ingredients or fragrances found in the ointments you've tried. Also, if you do have a true zinc allergy, zinc is naturally found in many foods and is a common ingredient in many over the counter products and medications (oral, topical or otherwise) so you may want to... [ more ]
mgmt10 I have read some people say regular A & D ointment works well. The one without the zinc oxide in it because they make both. Sorry I can't come up with anything else right now. Hopefully someone will be along with more ideas. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Ileostomy reversed,J Pouch working
B Blocker
mgmt10 I'm surprised they let you go home before your bowels woke up. I remember being really worried too that all these terrible things would happen and nothing ever did. And that's they way the majoity of the procedures go. Glad you're doing well and continued good health to you! [ more ]
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J-Pouch ForumsGeneral Discussion
My broken burning butt is on fire.
keepitclassykeepitclassy
jdgrimm ❤️
Deanna6 I have the same exact issues. My takedown was oct 2014 and had terrible itching inside at my two week check up. Was told it would go away . Not really sure why. Well, I am still dealing with it now and actually have an appt next wed to go in And take a look thinking that I have a stricture. It's now hard to go all the way, I go constantly but small amounts and always burning and itching. I too have started using Metamucil and have gotten some relief there. I use the water bottle all the tjme... [ more ]
Jeff_James Haha also just noticed the dates. Whoops! [ more ]
See all 37 replies...
J-Pouch ForumsGeneral Discussion
Fistula repair
D Dennell
rachelraven I have a simple perianal fistula. My surgeon won't consider a repair because the risk of incontinence is higher for us after this indepth pelvic floor surgery, plus the fact I'm 43 and had a kid doesn't help, either. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
J pouch Procedure
Andy1993Andy1993
CeeeeCeeee Just my two cents worth......my J-pouch loves just about all foods and beverages. I feel so fortunate to have found an answer to the three years of HELL I went through with totally out of control bowel movements and all the side effects of Prednisone. It has been 13 years since my Step 1 and 12 years since my takedown. I've never looked back! Best wishes! [ more ]
Andy1993 Thanks guys the info is awesome ! Jeff I started with the NSAIDs then imuran then ramicade and this is my 4th round of steroids, so they did try the other medications first the imuran held it off for about 4 months so they put me on ramicade which worked for a few months then stopped so he thought he would try it at the highest dose every 4 weeks to see what happens. My specialist has sent a referral for a consult for surgery so we will see what happens! your guys support has been awesome... [ more ]
Jan Dollar Interesting info, Rachel! While I was not quite a pediatric patient when I was diagnosed (just a month shy of 16), I was in remission within six months of prednisone, hydrocortisone enema, and sulfasalazine treatment (all they had back in 1972). Even though it was a full blown pancolitis with my first flare, I stayed mostly in remission for well over 20 years. In 1995, when I had my last big flare leading to colectomy, Imuran, cyclosporine, and similar drugs were experimental. They had not... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
what diet do you suggest
S shawanna24
jeffp ❤️
CTBarrister The UMass diet is derived from the SCD and is the only diet purporting to be specifically designed for those with IBD, although the Paleo Diet has spun off at least one book for those with IBD. More on the UMass IBD diet here: http://www.umassmed.edu/nutrition/research/ http://www.umassmed.edu/nutrition/ibd/ibd-aid/ If you don't have the time to leaf through all the recipes in the second link, I actually did. The diet makes no sense to me, applying what I know about nutrition and what I know... [ more ]
shawanna24 WOW! thank you for your response. I have never heard of the UMASS IBD diet (but I like the name ) I think I am going to look into doing the SCD diet first. I would like this to become a lifestyle change. I know sugar is so bad for everyone, esp us pouchers so I would like to keep it out of my diet for the long term. You are such an inspiration with having your pouch for 43 years! Good for you! [ more ]
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J-Pouch ForumsGeneral Discussion
Struggling and need help
_Jeffrey__Jeffrey_
TE Marie @allswell, I know you are trying to help and am glad you are doing better at 6 months. You asked if Jeffrey had considered going back to an ileostomy. Many of us feel that is the last resort, kind of like getting our colon's removed was the last resort. Further major surgery in it's self is dangerous, etc. Jeffrey's recent pouch scope was good with no apparent physical problems. With so many variables that factor into our health it would be a mistake to take out a pouch that appears to be... [ more ]
rachelraven Look over the FODMAP diet. It's a diet to limit sugars that cause symptoms in IBS patients, but works with us, too... especially since you're saying you have bloating and gurgling all the time. FODMAP means Fermentable Oligo-Di-Monosaccharides and Polyols. Stanford has a very short PDF online about it, but there's also books written by the people who started it: https://stanfordhealthcare.org...df-lowfodmapdiet.pdf I found that peaches and apples don't work for me, among some other things. [ more ]
_Jeffrey_ I have now quit dairy for the most part. It may be an ingredient in some of the foods I'm eating but no more drinking milk or eating cheese etc. I browsed the health food section at the grocery store yesterday and picked up some almond milk. It tastes quite good. Also picked up some milk drinks made with rice, another with hemp and another with coconut. Tomorrow I go to see my family dr. I'll have him send me for a blood test to see if I'm deficient in vitamins etc. My eczema has been really... [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
Quick question.
J Jeff_James
Jeff_James I totally agree with you all, was just curious. I'm having the 3 step go for my pre op in a couple hours and surgery tomorrow. I just wanted to kinda see what everyone though, but you guys are right. Everyone's situation is different. [ more ]
Spooky I think this is one of those subjects that will always be hotly debated -- i.e. whether a 1 step vs. 2 step vs. 3 step is better. And I don't really believe there is a right or wrong answer; rather, it depends on your own individual circumstances. Currently, I believe that the 2 step is still the most common for j-pouch creation. Many feel, as does my own surgeon, that a 2 step is more ideal than a 1 step, since diverting with a temporary loop ostomy and allowing the pouch time to heal... [ more ]
Jan Dollar I think it all depends on your situation, what condition you are in at the time of colectomy, etc.. There's no one right answer. Jan [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
would having a j pouch prevent you from contact sports like boxing, kickboxing, muay thai and mma?
F fightUC2
Shainy I don't enjoy getting hit but there is a lot of thinking and strategy involved in boxing which I love, as well as getting you fit so it's a great sport to do [ more ]
Jan Dollar I give you guys a lot of credit for even wanting to do this stuff. I can't wrap my mind around the idea of fighting for sport. But, it is popular, so what do I know? Even when I was completely healthy, contact sports did mot interest me. Looks like a good work out though! Jan [ more ]
Jeff_James I forgot to add that after my surgery the doc told my wife when he got done that it's a good thing we decided to get this done now(they moved my date up about 4 weeks). He said my colon was starting to perforate. So I guess I really didn't have a choice. I was lucky enough to get it out before it was an emergency. [ more ]
See all 21 replies...
J-Pouch ForumsGeneral Discussion
takedown in 1 week 3/2
U UjohnjC
UjohnjC Jeff I had 1st surg in 2/13 2nd 11/13 been so long cause I've had a sinus tract in pouch witch is a contained leak so I went in last week and they opened sinus tract up basically good luck with your next surg I will update post after takedown [ more ]
UjohnjC Ps thank you your reply was very encouraging I will update post after takedown [ more ]
Jeff_James Congrats! Hope all goes well for you. If you don't mind me asking, why has it been 2 years? I have my second surgery in a couple days. Is that how long it takes for the take down to be ok? [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
UK Pouchers (Equality Act)
F Fazz
jm You're still talking about benefits, like I said entitlement to benefits and the EA are not related. The original poster asked about the EA, not benefits. The EA is not relevant to anything that the DWP advisors told you. [ more ]
jm It depends what you mean by 'considered as a disability' and for what purpose. For the purposes of the Equality Act both Crohn's and Colitis are likely to be considered disabilies if severe enough. This is stated quite clearly in the government's own explanatory notes. People think the EA gives them all sorts of rights that others do not have, it does not. It simply ensures you are not treated differently because of your condition. [ more ]
jm Determining whether you qualify as a 'disabled person' under the Equality Act as rule does depend on your condition, it depends on the effects of that condition. Essentially what this means is that if, as a result of your condition, you are unable to perform day to day activities and this situation has lasted, or is likely to last, for more than 12 months then you will be classified as a disabled person. For some people a pouch does not prevent them doing anything, indeed it may well enable... [ more ]
See all 3 replies...

Join Us!

Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

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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