J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
I have water with me constantly. I drink at least five 16.9 oz a day. I Refill the bottle.... I don't get a new one everytime. No pouchitis or anything like that. But like you said I was leaning toward the weaning. Haha. I cut back quite a bit on the opiate as I want to get off them. I don't need em anymore. And I was always... Well it was in the back of my mind... Wondering how that was gonna affect my pouch and it's function. Hopefully that is it and it will straighten out and start... [ more ]
It could be weaning off the hydrocodone, as that typically slows things down a bit. Pouchitis comes to mind, too, but if you saw your doc and she said everything is okay, I'm not sure. I would be extra vigilant about your fluid and electrolyte balances though; with your system being off and working in that kind of heat, it would be very easy for things to get thrown out of whack. I live in Austin, and I have to be extra careful from May through September when it's so hot here...I ended up in... [ more ]
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J-Pouch ForumsGeneral Discussion
Peggy, Blockages can have a dozen different origins and not all of them are obvious nor easy to clear up. From what I can tell the most common are Ileu (when your bowel 'falls asleep' due to surgery (anesthesia) and takes it sweet time waking up or stops functioning post op) which can take days or longer to resolve, a twist or elbow in the intestine (think watering hose and a kink) and can resolve itself or require surgery, adhesions (out of control scar tissue building up inside of you... [ more ]
Sharon, Thank you for your reply. I get blockages often and about 2 to 4 times a year have to go to the ER (no other choice after it gets to the vomiting stage). I go to the same hospital (Toledo Hospital) where I had my 3 surgeries and was there for a solid 2 months and every time I go to the ER, the docs and nurses have no idea how to treat me, and some don't know what a J-pouch is. I have to tell them..... pain meds per IV, saline per IV, sipping hot tea is good. They always order all... [ more ]
Hi Peggy, I have a k pouch and have occasionally used a colon cleanser to clear up a partial blockage or over thickening of my pouch contents but would be very wary of using it on a full blown blockage. If I remember correctly it did cause a lot of cramping and urgency so it is not to be taken in the evening or if you have to go out or to work... The big danger is dehydration. You have to take it slowly and use a tiny bit at a time until you know the effect that it has on you...overdoing it... [ more ]
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J-Pouch ForumsGeneral Discussion
You could try using a catheter ("Medina", Foley or else) to empty your pouch. Read my posts in this thread for more details : http://forum.iasupport.org/for...ain-trouble-emptying Good luck ! [ more ]
6-weeks post-takedown, it could be recurrence of the stricture. However, since you are so early in the healing / recovery process, and you can verify the opening is still index finger-wide, it could simply be your pouch healing up and re-adjusting to things. Pouchitis can cause difficulties emptying as well, and it is not uncommon to have symptoms 6-weeks post takedown (however, most surgeons will not consider treating it as such at this early point after takedown). My advice: continue... [ more ]
Yes it's possible for the stricture to form again that quickly. I had a total of 5 dilations after takedown before it finally stayed open. I went every 6 weeks or so. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
I've had my jpouch 21 years and still don't know how to handle things at times. Very frustrated. The vag. end of things seems to be improving. However, the BB is very severe, as in covering a large area and extremely angry looking. I'm having doubts now as to whether it is fungal, as there is no itching, not too much burning, however, there is pain in the anal area where the seton comes out of, which is not typical for me. Haven't noticed any leakage or draining at that end, which adds to... [ more ]
Yes. I do occasionally experience itching/irritation on the outside of the vaginal area - this normally happens a few days before my period. I had this even before my UC days, so I don't think it's related. I have spoken to my OBGYN about it, and she said this is a common problem, usually caused by hormones or topical yeast (It's possible to have a yeast infection only on the outer area of the vagina, btw). She suggested an over-the-counter topical antifungal cream for when the itching is... [ more ]
I am at that age that almost all of my girlfriends are on it...and so far so good...no bad press...but that does not mean that you don't have to read up on the studies and make the decision yourself. I should try to get on it (or at least use the tube that I have got) if only for my future...they say that as you lose your esterogene things get thinner down there and can start to bleed so it is now reccomended even for those who are not sexually active. But I am in France and everyone is... [ more ]
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J-Pouch ForumsGeneral Discussion
i just got hold of the radiology reports on 2nd july 2014 there was a 2mm diameter anastomotic defect associated with small posterior anastomotic leak at 5 o'clock with 1cm diameter track extending for 4cm anterior to sacrum, reaching S4/5 junction on 8 september 2014 the mri showed the small posterior cavity has decreased markedly in size with only a tiny residual cavity (23 x 4mm) remaining although this still communicates with lumen. i guess there is reason to be optimistic this thing... [ more ]
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J-Pouch ForumsGeneral Discussion
I have 5, not done all at once. It is a long procedure, first remove the bad tooth have to wait a few months till that heals if its upper they have to take bone from below and also use cadaver bone then put a screw in so the implant will screw on. It takes a total of about 14 months maybe less maybe more. They put me to sleep each time and it really didn't hurt much after or when it was healing. Yes it is very expensive,but worth it. [ more ]
Bodoni, I have 1 implant in a mollar. They had to do a scan to check the bone density and thickness to make sure it was sufficient for the implant (I was bare off by a milimeter but they did it anyway). The implant was placed in the space where the tooth had been missing for years so they didn't have to let it heal first. He did it in 3 parts. 1st the drilling and implanting of the titanium pivot then a couple of weeks later they added a temp tooth for 6 months until it was healed and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Well, from what I was told, Sulfasalazine is in the same class of drugs as Colazal and it works for IBD and arthritis. Might want to consider that. [ more ]
Thanks for responding. It completely disappeared after her colectomy and now it is back. She doesn't have swelling or redness just pain.age had a scope a couple of weeks ago and had just some mild inflammation she has been on Cipro for three days and her frequency and bleeding are better but not her knees. What does everyone do about this problem?we did try Colazal but it didn't work. Is there anything else we can do? [ more ]
Agreed, Ljz, my docs have said the same about arthritis. My pouch has mild inflammation as well but I have still developed severe arthritis, e. Nodosum, PG and fistulae. I asked the same questions as you. Unfortunately, it is just the nature of the disease to attack other areas also and not just the pouch. Ask your GI about Sulfasalazine but make sure you take folic acid with it as the sulfa drug will affect the folic acid levels. [ more ]
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J-Pouch ForumsK-Pouch Korner
One of the meds, I found that didn't completely dissolve was Allegra, for allergies. One day I got out like around 7 pills. So be careful, I don't suggest this med unless it comes in capsule form, the one I took was pill form. This was before my valve stricture and bend, years ago with a working valve. [ more ]
I just paid the price for having my 'fruit day'...ate only fruits (bananas, peaches, a whole pineapple that I chewed and spit out, watermelon etc) then had a large salad for diner...yikes! Went to work this morning after trying to empty things out for 4hrs then had to empty every hour for the next 5. Mostly just plucking out roughage from a terribly clogged tube but I couldn't get the gas out because the tube was constantly blocked. This summer I was on chewable probiotics (the costco kind)... [ more ]
When I first got my Koch pouch 36 years ago, I went on a diet to lose weight and it included eating a lot of carrots. Big mistake! Even though they were well chewed, there were just too many little heavy pieces to flow out through the catheter. Also watch out for certain vitamin & mineral supplements in tablet form -they don't always digest and they can collect in the pouch and you won't know it unless one gets caught in a catheter hole and you carefully extract it. I stick to capsules. [ more ]
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J-Pouch ForumsGeneral Discussion
Thanks. Stay in touch [ more ]
Yes Holly let us know. I will be booking mine soon. I see the surgeon tues and will discuss the time frame etc. good luck! [ more ]
Holly, best wishes and prayers! Thanks to all for the input -- especially those of you who are a bit older! Regarding the "live every day" advocates, I'm with you 100%. I consider myself a pretty happy guy and very lucky that we have these medical options available to us. I guess I'm just fine-tuning! [ more ]
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J-Pouch ForumsGeneral Discussion
I take a Lomotil at bedtime, and generally sleep through the night. If I skip taking it I'm more likely to have to get up during the night. I don't use it during the day, unless I'll be away from a toilet for an extended period (e.g. on a boat). [ more ]
everyone is different. i currently have a loop ileostomy and am in between surgeries 2 and 3. for about 4 weeks after surgery i was taking immodium regularly. now its been 4 months and i dont take anything. my output is ok if my output is getting a bit liquidy i may take one immodium a day, but then i find my output gets too think and i start pancaking around the stoma. [ more ]
The first few years after surgery, I took 2 in the morning, and 2 in evening. Once pouchitis, and blockages made their appearance, I don't take any. [ more ]
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J-Pouch ForumsGeneral Discussion
I have same issue, but have had some nights where I sleep all night and wake up un-soiled. Mostly what I eat and how late I eat have a lot to do with whether or not I experience leakage. I siggest metamucil or Immodium at bed time. Make sure to go to the bathroom right before goi g to sleep. A banana a day is also helpful, as it tends to be like a thickening agent. I cant imagine drinking so much water that I make sure I have to get up in the middle of the night. My goal is 6 to 7 hours of... [ more ]
When I had my ileostomy I had to wake up once or twice a night to empty. I found that I slept much more soundly when I had set my alarm to wake me in the middle of the night. I seemed to be able to settle knowing I would be woken and when I returned to bed I fell right back to sleep again. [ more ]
Thanks for the suggestion. Nighttime incontinence is really my only significant problem right now. It's causing me to not look for a girlfriend for the past half a year or so. [ more ]
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J-Pouch ForumsGeneral Discussion
Johnny J Pouch; After the creation of my J pouch, my Stoma output was continuously watery, for at least 4 weeks, it was this kind of output which consisted of bile acid which caused the burning and erosion of the skin around my Stoma. During 15 to 20 days after surgery, I too was nauseous and I was producing too much bile acid, so much so, I had to have a nose tube inserted to drain the bile from my stomach. I vomited a few times too. Due to the vomiting, the production of acid and the... [ more ]
The probiotics was suggested to balance the bacteria in the gut, no more has been mentioned about it since and it was initially suggested by the Gastro medical team. My Stoma output is not continuously watery, most of the time I'm well, even since the creation of the j pouch, I've been recovering very well. My stoma output is normally of a milky porridge like consistency. On 3 occassion I've developed mild stomach spasms, which are very uncomfortable and gradually become more servere with... [ more ]
Strange, I haven't been on this site since my last post of mine that you commented on; I am about 4 weeks since my J pouch construction; sounds like I am having similar symptons. Lot of nausea and my bag is filling up with complete liquid several times a day; I made a trip to the ER last Friday (Sept 5th) and received two bags of IV fluid for dehydration...thought I was drinking enough, however, it appears once you can't keep up with the bag output, it's already to late. Trying to re-adjust... [ more ]
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J-Pouch ForumsOstomy & Skin
J-Pouch ForumsHelp! Need advice now!
bio bidet. Google it-lots of models-I currently have the under $200 one, which hooks up to warm water from sink. We are redoing our bathroom and I am considering upgrading, just for the asthetics of it to look more streamlined, and they also come with warm air heat, etc. Look for the enema function or the Turbo. At least that is my preference-I have tried bidets with less pressure, and while nice, not nearly as helpful as the high pressure ones. [ more ]
http://smile.amazon.com/Joy-Bi...ywords=bidet+sprayer This is a link to one that is just a hand held sprayer that attaches to your tank water and requires no electricity. You adjust the water pressure to where you want it and petty much leave it at that setting. I used this for 3 years before I got my Coco bidet seat. It's cold water but gets the job done. I LOVE me new Coco bidet and wish I'd gotten it in the beginning. My husband had to wire a heavy duty bathroom outlet to plug it into. [ more ]
I went pretty high-end and got the Toto Washlet S500e. It needs electricity, but I wasn't willing to use cold water, at least in the Winter. The only fancier Toto is the S550e, which raises the toilet seat as you walk up to it. The unusual feature that I'm very pleased with is that it sprays the bowl before you sit down. This seems to be enough to enable my old toilet to clean the bowl properly with a single flush. It's prettty expensive, though. I haven't yet hired an electrician to install... [ more ]
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J-Pouch ForumsGeneral Discussion
Dog, If you are on a 2 year scope plan, it's likely you have not had dyplasia, cancer or pouchitis of a chronic nature, otherwise you would (or should) be on an annual plan. I have health insurance and my copay on my scopes is $500. In my case, I have to do it annually and I have to pay. The alternative is to have a cancer develop and not get treated until it's too late to do anything about it. Which would not be a prudent approach. For those who have no history of dysplasia, cancer, or... [ more ]
I was actually scheduled to have a pouch scope (once every 2 years), but my employer has moved to a high-deductible insurance plan. The pouch scope would cost at least $1,045, which I simply cannot afford to do every 2 years. I can afford to have health insurance or I can afford to go to the doctor. . .apparently not both. So, guess I'll have to just hope for the best and not have scopes done. Anyone else in this situation? [ more ]
I am so sorry to hear about all that you went through, Phoenix. Thanks for the encouragement. CT, I think you hit the nail on the head. I will be proactive about this issue at each exam in the future. I also made an appt. with my CR surgeon. All's well in the end. Haha, in the end! [ more ]
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J-Pouch ForumsGeneral Discussion
I could be wrong, but let me give you my idea of what it is. I think the itching is what it feels like to us when nerves are healing. I've had other surgery where minor nerves were damages and I think the doctor said the itch was the nerves growing back. Not that knowing what it is can stop the itch, but you may be able to look at it differently now. [ more ]
Grandonian, I never even considered a hernia...that's a thought. I have been exercising more these past few weeks and if I do have a hernia, I may be possibly aggravating it. Please keep me informed as to what the docs think is causing it w/ you. Good luck & thanks for replying to my post. [ more ]
Hi Peggy- This is the first time I've heard of anybody else having that same experience! I have, perhaps mistakenly, associated it with a persistent hernia I have at the site of my old temporary ostomy. I can't explain its origins, only that it comes and goes, occasionally accompanied by a stinging or burning sensation. I have a surgical consult at the Cleveland Clinic later this month and I will be sure to discuss it then. If I get any new info, I'll be sure to pass it on! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
C-Section was nuthin' compared to the colectomy. It was more on the level of the loop ileostomy take down. Sure, you have an incision to care for, but nothing like have your entire inside being cut up. The ONLY thing that was maybe remotely worse was being awake during the surgery prep! I got soooooo nervous since I didn't want to take any sedatives before the baby came. My OB assured me I would feel fine once I heard/saw the baby, which was totally true. I could have been cut in half and... [ more ]
My incision for the c-section was vertical because I had 3 previous abdominal surgeries and was cut open 3 times vertically. My OB did not want to make an horizontal incision on me. I am not a good person to talk to about if the j-pouch or c-section was worse. I had horrible complications after both. I am fortunate I have a healthy daughter and that I am doing much better health wise. My stomach is now back to "normal". It took time though. [ more ]
My c-section was a piece of cake compared to the j-pouch surgeries! I was walking around that night and after 5 days felt normal again despite a little soreness. My stomach returned to normal. You just have to give it some time and exercise if you have time after you are allowed to :-) [ more ]
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J-Pouch ForumsHelp! Need advice now!
You may want to post this on the Ostomy and Skin formum on this site to get more of a response. [ more ]
Soo here is a picture of this weird pattern on my stoma... http://tinypic.com/r/2ijqgav/8 It's definitely not from my appliance. This particular area also tends to bleed, and mucus appears and sticks only to this patterned area. My body does strange things. Could this be a sign of Crohn's?... Any insight would be great!!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
http://www.biolifetechnologies...COCO9500X-Bidet.html http://www.biolifetechnologies.com/purebidet.html {edit}I just found this second one today while answering your question at a different location on the website. It looks like an awesome deal at $299 delivered. We paid $329 delivered for a similar one. It was elongated seat and the one posted first above. {edit} This is like the one I got around 6 months ago that requires electricity. It heats up the water and feels better than the sprayer... [ more ]
omg..everyone i have been a silly gal not getting one i can see..but where to begin with necessary features for my issues which are like everyone else who answered.,non electric if possible..i understand there are those..willing to spend what i have to but would like easy install.. not to awful looking! please let me know which one to get with actual name model if possible.. there are so many cocos how do you know which to get or BBS? REALLY APPRECIATE IF I COULD BYPASS THE SEARCH AND GET... [ more ]
I have the less than $200 biobidet 3000, easy peasy hook up, no electric even needed. It changed my life! I had leakage, butt burn, and chronic anal pain of about a 4/10 all the time. The bidet keeps me clean, keeps those tissues from getting inflamed due to little leakages, and I no longer have chronic pain at all! No more butt burn, no more creams, no more wipes. It has EASILY paid for itself just in saving money on TP, wipes, creams alone. WILL NEVER live without it, and MISS IT TERRIBLY... [ more ]
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J-Pouch ForumsGeneral Discussion
Jeff, In spite of the fact that I have a k pouch I do my Kegels religiously for pelvic floor and other 'girly' stuff'... My routines are simple and easy to follow... Morning & night, in bed before I get up or fall asleep I do my hip raises. Legs slightly spread out, knees bent, butt and 'everything down there' tightened up...I raise my butt off of the bed couple of inches, hold a couple of seconds then put my butt back down. I also squeeze the thights together while up there on alternate... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
@iholdem thats awesome, you were able to conceive right away i wish i would of known about fertility isues before surgery i would of totaly asked my surgean if that could of been posible protect my reproductive organs. I did havr it lapracopic I hope that made a difference. [ more ]
In my case, I think the active UC and meds were making me more infertile than the surgery did. I had a miscarriage and a year of trying with no luck pre-surgery. Post-surgery I got pregnant right away. (And I think I also had an excellent surgeon - he stitched up my ovaries kind of "out of the way" based on his theory they might evade scarring, and when I had my subsequent c-section my OB said she hardly saw any scarring.) Obviously fertility isn't that simplistic, but in my case I think... [ more ]
Oh wow u had jpouch then switched to perm ileo?Why? If u don't mind me asking. I just hole when I do try to conceive I don't have to go the ivf route because it's like 15grand ;( [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Congratulations! I am glad you had an "easy" delivery! [ more ]
Update: On May 7thh I gave birth via c-section to a healthy 6 lb baby boy. Funny thing was I didnt even realize I was in labor lol. The night before I started getting cramping in my pouch which made me feel like I had to use teh restroom. This continued all night and in teh morning I jokingly timed the pouch cramping and was surprised to see that they were happening every 3 1/2 minutes and lasted 45 seconds each! I called and the doctor said to come in to be checked. I went to labor and... [ more ]
Had one C section, never had an NGT or ileus with it. Did with the J pouch, though. C section was nothing like J pouch surgery. No complications here. They don't mess with your bowels much if at all with the C section, and bowels hate to be touched, which is one of the reasons they sometimes go into an ileus. I had a spinal. The effects of the spinal wear off pretty quickly, though. Should not be a cause of an ileus, as it's not systemic. Best advice is get up and start moving, quickly. I... [ more ]
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J-Pouch ForumsMen's Health
I would not. the chances are to high for damaging the thin layer of colon you have left where they reconnected you. You don't want to mess with something like that. [ more ]
No, but she could certainly ask her doctor. She can also request copies of medical records. She does not have to have a specific reason. She could just say she wants them for her own file. It is not unusual for someone who had surgery as a child to have questions later in life. Jan [ more ]
yes she has had regular check ups but she honestly has no idea if she has a rectum or not and is to embarrassed to ask her mom. This may sound stupid but is that something she could check herself with a physical exam? [ more ]
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J-Pouch ForumsMen's Health
J-Pouch ForumsGeneral Discussion
After my initial 3 infusions for 3 days, I am now getting one infusion every two weeks. My next appointment is Monday. It lasts about 4 hours. The first few days after an infusion, I feel a nice slightly euphoric energy. [ more ]
Endi - I have heard of IVIG. How often do you have to do IVIG and how many hours is the actual infusion? [ more ]
I'm feeling really good. I will be continuing my treatment. I have put my ongoing experience with my ongoing treatments in a new post. You can click on the link below to read about it. http://j-pouch.org/eve/forums?...897043276#3897043276 [ more ]
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J-Pouch ForumsPouchitis
J-Pouch ForumsGeneral Discussion
Why not make your own. Baked sweet potato chips are one of my favourite. [ more ]
Thanks everyone for your input. I will try some different brands (a few at a time) but plan to just give them all a rest for a while. I am feeling better right now and want to keep it that way. [ more ]
Kathy, I eat UTZ potato chips - the only ingredients are oil (cottonseed - not the best - oh well,) potatoes and salt and they are thinner than other chips. They actually help to thicken my output. However, their dark russet potato chips I am unable to eat. I've tried them several times because they're delicious and I wanted to make sure that they were what was causing the problem. I felt like I was pooping shards of glass each time . If you really love chips, try different kinds of those... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
My initial surgery was laproscopic which went fine but a month or less into it I had a serious blockage that put me in the hospital and they could not find it so off to surgery. I was cut wide open and while they were there they hooked it up and took the bag off. Within a week I was back under the knife because of bleeding in my abdomen that could not be explained. That surgery almost killed me. I was in the hospital off and on for over a month with blockages and loss of appetite and such. [ more ]
I did not do as well as expected. It was expected to be 3 nights in hospital, but it turned into 7 nights, due to fever and vomiting. Nothing major. But wish it had been smooth sailing. Easiest surgery for me, was step 2. Told it would be 5 nights in hospital and that is exactly what it was, with no complications. I was ready to leave after 3 nights! The healthier you are, the easier the surgery and recovery time will be! [ more ]
I had a two step procedure with step two being the takedown. Take down, for me, was a breeze. Minimal pain, 3 day hospital stay...zero problems and once I was home I healed and adjusted very quickly. The first surgery was really tough for me and I had complications so I was very relieved to have an uneventful takedown. [ more ]
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J-Pouch ForumsGeneral Discussion
I use both Metamucil and Psyllium husks. (OMG no, not at the same time :-)) I find that the Psyllium husks don't dissolve well in liquids and I can't handle the texture - like eating sawdust - so I mix mine with liquid honey, jam or peanut butter. I use the Metamucil in the morning 0 added to my fruit smoothie and I carry it in my purse to use when I am out somewhere because it is easier to deal with in a restaurant or friend's house than the "sawdust". But you are absolutely right, it is a... [ more ]
another two cents: I don't think I could live without my psyllium husks (what Metamucil is made from but without any flavour, sweetener etc). It seems I may take more than others as I am reading this but I find it helps provide bulk and form to the stool. I take a heaping teaspoon with a couple of ounces of water after each meal and then another before bed. I buy it in bulk (Bulk Barn) and the cost is much less than Metamucil. I find the taste of Metamucil really unpleasant (even the... [ more ]
I use the capsules and take them right before meals. I take 7 or8 before each meal, along with a couple immodium (and don't drink the extra water that is recommended), but most probably need less-I also have incontinence issues so REALLY need to bulk. The psyllium just absorbs a ton a water from your meal. Start with a low dose and work your way up until you see what works for you. I like the capsules because they are easiest to take. [ more ]
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J-Pouch ForumsPouchitis
oregano oil might be good to look into it to see how much..i think you can take with antibiotic because you will stop antibiotic to see if oregano will work for you..one jpoucher doing it over a month now but she takes 12 drops of oregano oil with no antibiotic.. i plan to give it a go to rotate it from antibiotics because not sure at this point how long you can be on oregano oil..three months so far seems the number i hear about.. but in retrospect thinking do not try to many things at once... [ more ]
heres something you might want to consider..for my chronic pouchitis i eleminate complex carbs and sugars thus if i want to add some extra calories and because of my restrictions which include no protein powders of any kind (processed a no,no )this is my latest try protein supplied by cartoned egg whites,i add some frozen blueberries,even half a banana if you want.little water (depends on how much egg whites i add) and for weight gain some almond butter (but must be one only made with... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Laurie, I don't really know how well the Florastor works to prevent C. diff. I take it (actually the CVS version, which is less expensive), but I have no idea if it does any good. If you're that worried about C. diff, maybe Florastor will give you some peace of mind. [ more ]
Thanks Scott! Do you think I could/ should add the Florastor or other cheaper version just when I'm on antibiotics? My Dr. and team don't think I need to be so worried about c-diff but I am-having that was worst ever! [ more ]
Laurie- There are differing opinions about the value of VSL while on antibiotics. Some folks try to space them apart, and others think the antibiotics make the VSL useless. I take them both, and I did get sick when I dropped my VSL dose below the maximum. It could have been a coincidence, though. VSL seems to help prevent some kinds of pouchitis. However, I don't think anyone recommends VSL as a way to prevent C. diff. In general the probiotic recommended for that is S. Boulardi (that's... [ more ]
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J-Pouch ForumsHelp! Need advice now!
So the dr put her on Proctofoam to help with the mild cuffitis. She started to bleed more so they said to stop. Then the GI looked over her biopsies and said they are going to put her on Cipro and possibly a different suppository. Her knees have been hurting her again and she hasn't had that since before her colecotomy. I don't understand why the Cipro and why her knees are hurting again? Do you get knee pain with mild cuffitis and eosinophils? Does his mean she has pouchitis? The surgeon... [ more ]
Thanks everyone for responding. Jan thank you that makes me feel better. I will post more once we hear back from the GI. The surgeon told us the results of the biopsies but the nurse was the one to mention the cells and felt we needed the GI docs opinion. [ more ]
The bleeding could still be from the stricture. The finding of eosinophils is not very telling. Ordinarily, it could imply active IBD, but with an ileal pouch, it is just an indicator of inflammation. With the stricture, she'd have some fecal stasis/retention and that would contribute to inflammation. It does not mean she has Crohn's or chronic pouchitis. Bottom line, this finding can be simply incidental (something that is noted, but of little to no significance). Jan [ more ]
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J-Pouch ForumsGeneral Discussion
JJA, I remember you telling your story before, which is why, even though I hate my fistula, I trust my surgeon's choice not to cut on me. I'm completely continent, I'm only 43 years old, and having even a degree of incontinence would be worse than what I'm going through. [ more ]
I STRONGLY ADVISE AGAINST the lay open procedure. I had that done and it left me wildly incontinent. Even with a subsequent sphincter repair, I just have low tone and with our lose stools (and even when I get my stools as thick as possible) I have incontinence issues. I cope with meds to thicken stools, a cotton ball tucked up inside, and use a bidet regularly to keep things clean and healthy tissue. I also got a spinal chord stimulator a couple years ago. It helps with the incontinence... [ more ]
My surgeon would not lay my fistula open, stating that our surgery causes distinct decrease in sphincter tone, and cutting there he felt was not in my best interest. Mine is a pretty simple intrasphincteric fistula "at 7 o'clock," which is on my right side. I have a seton through mine at this time. I trust my surgeon's views, though I'm frustrated by them. He's a well-rated doctor with a great track record. Doesn't mean you'll have continence issues after surgery, but I'd ask about that. The... [ more ]
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J-Pouch ForumsGeneral Discussion
I've been on Flagyl for 7 years now and started developing neuropathy in my feet about 4 years ago. It's gotten a bit worse, so they're trying to replace the flagyl with another medication. So far cipro and 6MP haven't worked (I already take Humira weekly), so we're thinking of adding Remicade back in to the mix. [ more ]
While I still had my colon Cipro gave me c-diff so I can't ever take it again. I have fibromyalgia and peripheral neuropathy in both of my feet plus some other problems. If augmenten doesn't work I use flagyl for pouchitis, because I have the neuropathy but it's not what caused it. We just do it as a precaution just in case it might cause further damage to my feet. I don't recall taking the third one. I started out with an under active thyroid, UC, GERD and I have to get the bottom of my... [ more ]
I think for those drugs to be implicated, you would need to exhibit some level of neuropathy while taking the drug, not some remote time later. In particular, this is true for antibiotics. With the Azulfidine, it appears that it is a rare side effect, occurring early in treatment, but there is documentation of it occurring with long term treatment. Still, I saw no reports of an association of neuropathy after stopping the drug. In my case, I am a believer in the neuropathies I have to be a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
BioBidet I-3000. Under $200. Has the "enema" function which I love. No electrical outlet required. Can hook just up to the water valve on toilet or also to the hot water valve under the sink if you want hot. Easy to install. LOVE IT! [ more ]
I have a TOTO Washlet and have had it for over 10 years. It replaced the toilet seat and lid. I'm not handy and so I had my plumber install it. It uses the hot/cold water source and does plug in to an outlet nearby. I have it installed in my bathroom rather than the main bathroom of my house. Selfishly, I don't want anyone else using this toilet. I couldn't live without it! [ more ]
Hi Wendy! I first tried the Joy Bidet, Model HC-3 from Amazon- it was around $65 I think and it was a great help. It had both hot and cold water by using the hot water hookups under the sink. When we moved we couldn't access the hot water hookup here so I upgraded to a coco bidet (which I am also using with an extension cord!) and really like it as well. But for a nice basic model, I thought the Joy Bidet was great. I'd say install it in the bathroom that is easiest for you to use as often... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I had a fistula, and much is always asked about "maybe it is crohns" but no other evidence, ever suggests that it is. That said, I have now developed chronic pouchitis that does not respond to rotating antibiotics, but is responding great to IBD meds. In the end, the diagnosis is a little fuzzy in many cases, and finding a treatment that works is the goal, whatever the diagnosis. My personal opinion is that UC & Crohn's are not really 2 separate diagnoses, but rather that IBD is probably... [ more ]
Even perfect surgeries can result with a fistula, particularly if there was something unique to you that prevented complete early healing. UC could be a contributing factor. It is way too early to be thinking about pouch redo, which is more of a last resort thing. But, once established, they are not easy to get rid of. Sorry. Jan [ more ]
Surgeons are a confident lot, so it's hard to know how to interpret his confidence. In any case, fistulae can result from the surgery or from Crohn's, and they often can't tell for sure which it is. If it's a fistula it may turn out to be manageable without surgery, hopefully becoming no worse than a nuisance. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
I had leakage issues after my sphincter was damaged. I took (still do) a LOT of Metamucil capsules and immodium daily, actualy some codeine, too, and tuck half a large cotton ball all the way up into the anal canal after every bowel movement. It works wonders. The drugs help with thickening, but I could not LIVE without the cotton ball tucked up there-without it I have so much leakage I'm basically incontinent. With it-leaks are down to only a few a week, and the butt tissues are in much... [ more ]
I'm sorry to hear that Katie but I wonder if it was the chips. I don't do well with potato chips. Maybe you should try again tomorrow without the chips. [ more ]
Yesterday I started Metamucil and lomotil during the day again. Sadly, my luck ran out, ha. I was up several times last night to clean myself after having passed stool with gas, and I've been leaking gross pasty stool all day! Arg! I ate a ton of baked lays yesterday, maybe the potato chip poster was onto something Katie [ more ]
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J-Pouch ForumsPouchitis
CT Barrister: If I am understanding you correctly, you were wondering why some of the recipes would include wheat flour and grains etc. My reading of this site is that the IBD Anti Inflammatory Diet (IBD AID) recipes are found only in the IBD section of the website. The other RECIPE section is for just regular 'healthy eating'. I had some communication with one of the authors who told me that bean flours, almond flours and coconut flours are ok as well as oats. This is my understanding anyway. [ more ]
winter wish, The article you have posted is about the UMass diet which is discussed above in this thread and in other threads. The banana bread recipe and other recipes I mentioned are all from this diet. The questions I raised in this thread are in relation to this diet and the recipes posted on the UMass website. Not sure if you read the rest of this thread, but this is what we have been talking about. If you cull through the recipes carefully you will see that there is not so much... [ more ]
http://www.nutritionj.com/cont...f/1475-2891-13-5.pdf Has anyone more experience with this diet? What about tea/coffee? Its looks a lot of work, but antibiotics are not working so well anymore.. no grains except oats. good to see some research into dietary options [ more ]
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J-Pouch ForumsGeneral Discussion
Good News! As Scott pointed out I was talking about external use of calmoseptine. If you'd rather use the capsules than drink Metamucil then I think 5 or 6 of them equal one dose. They come in generic form too I know Walgreens and Walgreens make them. I doubt it is cuffitis if it comes and goes and suspect it is related to a food or maybe your monthly cycle Carol. You might want to look in the Women's Heath & Pregnancy forum. Have an awesome weekend, zoom, zoom, zoom...... [ more ]
Thanks. I have not tried the Lomotil because the Imodium works for me (most of the time) but I may give it a try. I also measured the amount of Metamucil or Psyllium that I take and you are right, it is more like a good size tablespoon. I am not having problems with my Magnesium now and am not taking any supplements and my burn is all on the inside. The outside skin is fine. I have 100% faith in both my GI surgeon and specialist. Have not been scoped (post takedown) yet but there is a plan... [ more ]
A couple of additional considerations: 1) Lomotil works better than Imodium for some folks (like me). 2) Make sure the Metamucil dose is adequate. I think it's closer to a tablespoon than a teaspoon. I used one of the Metamucil packets (which I have for travelling), and poured it into *my* usual kitchen spoon to see what "a dose" looked like. I was surprised by how much it is. 3) Marie's point about the laxative effect of magnesium supplements is important, if you're taking any of those. [ more ]
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J-Pouch ForumsGeneral Discussion
I will ask. I think he's waiting on the EUA to see what direction to go. [ more ]
Hey Rachel, I struggled with many of the same symptoms as you this past year. My surgeon prescribed Salofalk suppositories (I think that's the Canadian version of canasa) and it helped,but I also seemed to reach a plateau and symptoms returned. I kept going back to my surgeon for a scope and kept telling her I still didn't feel right. She said let's give proctofoam a try. Well, it really did the trick. I wonder if it was the cortisone in that medication, as I always responded well to... [ more ]
Rachel, I hear ya. I was relieved to be offered biologics when my sacroiliitis pain was so bad I could not sleep and could barely function. The potential side effects did not scare me at all, since the side effects of what I was living with were actually happening. I am on my third biologic, Simponi (after Enbrel and Humira). By far, I enjoy Simponi the most. Once a month and it does not sting like the Humira. I get my monitoring blood work every three months and my numbers have only... [ more ]
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J-Pouch ForumsMen's Health
Some people get relief with deep tissue massage to break up adhesions. But, it scares me to think about tearing those adhesions, since they are usually stronger than our intestines. Other than that, dietary restrictions to avoid too much roughage can be an option. Some even live on a liquid diet, but that seems extreme to me. There is no magic solution, like avoiding a single food or a couple of things. Jan [ more ]
Thank you Jan, I definitely do not want more surgery, but I also want my life style back. any suggestions [ more ]
Adhesions do not go away with time. Like any other scar, they are there for good. The only "cure" is surgical release, but more surgery can cause new adhesions to form. Unfortunately, some of us form more adhesions than others, and that pattern stays with you as a genetic predisposition. Jan [ more ]
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J-Pouch ForumsK-Pouch Korner
Good point Sharon, I'll stick to urinary catheters for the hard to get in days. Right now, I'm afraid to take my catheter out to start the every 2 hour empty and wear a leg bag at night. I have made so many trips to Mayo Clinic already, it's expensive to go and stay there again and again. So I need to pay off the bills I already have. But I am prolonging another dilation if needed or valve reconstruction. With winter coming, I don't want to have to go then. So I don't know, what I'm going to... [ more ]
Let's just rename you Mc Giverette! In Toronto they use a faceplate/flange with the hooks on the sides for the belt and then pull the tube through the rubber center of the faceplate...They then suture the tube onto the flange so that there is no tape at all. It holds quite well and you can pull it a ways away from the skin to change the gauze. I wore it for a month each time...you need to wash the belt and change the flange every so often or the center gets hard and the tube slips through.)... [ more ]
I've been thinking of that actually. You never know what you'll find that could come in handy. I have used a wooden dowel in the end of my catheter as a plug, I now use the cap from an eye dropper....they work great. I've made an ostomy plate for holding an ostomy bag into, a "catheter with plug inserted" holder. I come up with all sorts of ideas. I haven't tried it yet, I just glued it together so I can put my gauze under it and glued a water bottle cap in the middle to hold my catheter... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch ForumsGeneral Discussion
I honestly do not remember much about specific details or medications during my hospital stay. I constantly had a drip of morphine, antibiotics, and whatever the heck else they needed to pump into me. In addition to the PICC line, I also had a wound vac, an abcess drain bag and of course my ostomy bag. FYI: I was allergic to mesalamine and could only be treated with Prednisone for my UC. I had an apparatus sticking out of every possible side of my body. To recover from such an ordeal is... [ more ]
I'm so sorry for your loss! Losing my mom was the worst thing I have ever faced. I don't know what your situation is but I found it easier to cope with her loss by talking about her often to those around me. It's great to hear your on the mend though. I feel the same way when I had my pe all I had was shortness of breath and back pain. I was pretty down while in the hospital but the doc set me straight when he said most people that have pe are either dead or have a heart attack. I quickly... [ more ]
I am not any meds now. At some point during my 5 weeks in the hospital (with numerous complications), they put a filter in me (somewhere near my groin) to prevent any further blood clots. Sad part for me now, is that my ex-husband just died from blood clots 2 weeks ago. He broke both feet and ended up in a wheelchair for 6 weeks, thus the blood clots. We had finally made our peace with each other in June (after 3 years and a nasty divorce), but blood clots are silent killers and I am lucky... [ more ]
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J-Pouch ForumsPouchitis
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Rebe- The doctor was very surprised that it was working for the pouchitis and especially at that low dose. I think the higher dose would have been for short term use, but he told me it's okay to continue long term at the low dose I'm taking. I put a few drops in my water (distilled water). CLZ- I too would be interested to hear any other perspectives. I was not able to find anything in my research that explains why this works. No other mention in this forum either. [ more ]
I would love to find an alternate to antiobiotics, but I thought you are only supposed to take KI if you have thyroid issues or have radioactive iodine in your system. Would defintiely be interested to hear others perspectives on this. [ more ]
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J-Pouch ForumsGeneral Discussion
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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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