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J-Pouch ForumsGeneral Discussion
understanding surgery
L Lenora
Scott F I found the fiber capsules didn't mix with stool as well as the powders, so I gave up on them. [ more ]
Lenora I tried the beano when I went on a week long trip and had to share a hotel room. It cut it down a bit. But I went from a nuclear bomb to perhaps a smaller bomb, so not sure it was worth it. I did get the fiber pills today. I am going to try them, thanks. [ more ]
Scott F You might find any of the soluble fibers (Metamucil, Konsyl, Citrucel, Benefiber) useful for bulking up your stool. It's certainly worth a try, to see if you find it preferable. Some people get gas with one or another of these, or don't care about bulking up the stool. Why not experiment a bit? I use Beano with gassy vegetables to keep gas down. I use Lomotil at bedtime so I don't have to get up to use the toilet (other folks prefer Imodium). [ more ]
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J-Pouch ForumsGeneral Discussion
Malabsorption
T Thompson
Thompson I'm really sorry to hear that. I honestly hope he does get better soon. I wasn't aware of this disease up until now, so thank you for informing me. I guess all we can do is pray and hope for the best. I will certainly get another blood test done to make sure things are ok. Thank you for your suggestions and please keep me informed on Jeff's recovery. Hope things get better, Thompson [ more ]
Jeffsmom Thompson, it's a weird story, but typical I think. He developed jaundice last week. Went to surgeon because he alreaday had an appointment. They did a series of blood work. His blood work showed his liver ensimes out of order. They then did a sonogram with is normal protocol, then an MRI.. The MRI showed gall bladder was clogged up, they thought it was gall stones. then they did this special endoscope, I forget what it's called,, but you can find it easily. Thats where they saw that his... [ more ]
Thompson Hi Dianne, I'm terribly sorry to hear that your son has been diagnosed with PSC. I hope he gets better. I was doing a little research and it seems like a very serious disease. May I ask how he was diagnosed and how PSC is diagnosed? Also what were his symptoms? I have had blood tests that have come back fine recently, does that rule out PSC or is further investigation needed? Many thanks, Thompson [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
change in menstral cycle after jpouch surgery
E elle162
iamkristi hey thanks for the valuable tips! [ more ]
Jan Dollar None of this is j-pouch specific, but more about abdominopelvic surgery, IBD, and recovery, so your GYN should be able to advise. Your age alone places you in a quite reduced fertility group, plus the low pelvic surgery can cause adhesions that affect your ovaries and tubes. So, it is good that you will be seeing your GYN sooner rather than later. Ovulating and periods are only part of the story. With our surgical history, they get on board with fertility treatment/counseling much sooner... [ more ]
elle162 Thanks, Jan! I'm 35 and I was on steroids prior to my first surgery in January 2014. I have an appointment with my GYN next week. I don't think he has any other patients with a jpouch. It's nice to hear that others have had their cycles affected. I'm hoping to have one more child. I had my son prior to my surgeries. I hope it hasn't impacted my fertility. Thanks again for your reply. Take care. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bad Leaking At Night
Y YOUNG&LOVING
OldPoucher I've had my j-pouch for 21 years and up until about 6 months ago, I rarely had any leakage. I do tend to have pouchitis occasionally so I would say that is probably a contributor to your leakage issue. I would definitely talk to your doctor about getting a prescription of cipro - it works wonders for me. I have found that taking fiber pills about an hour before I go to bed is also very helpful. I have found Citrucel to be better than most of the others because it doesn't cause excess gas. (I... [ more ]
Lenora It has been 25 years since I had my surgery and the leaking improves over the years. But I would say the worst was in the first 4 or 5 years after. Alchohol, colored sodas and being tired and sleeping too deeply were my triggers. [ more ]
Scott F When that happens to me it's a signal of pouchitis that needs treatment. [ more ]
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J-Pouch ForumsGeneral Discussion
corn muffins
MIKEEYMIKEEY
MIKEEY Spookey-Thank you so much for your response. [ more ]
Spooky Agree with everyone else. We all have different tolerances. You just have to try everything in moderation and see how it goes, when you're starting out. I just want to add that I bake my own cornmeal muffins all the time; I use less sugar than the recipe calls for, but I've always done this with baking, even long before my pouch days. The muffins freeze great and are handy in a pinch. [ more ]
Scott F Michael- Your initial question was whether "we" can tolerate corn muffins. I put "we" in quotes because now I don't know what chronic condition your doctor is attempting to treat with antibiotics, though apparently it's not pouchitis. In any case, my corn muffin suggestion stands: it's fine to try it unless you're on a low carb diet. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Anus troubles
A Airbailey
Former Member ❤️
Ljz The Ilex paste will stay on through lots of output during your bathroom visit. It would last for more than one BM but I clean it off after each movement. Requires good dose of vaseline rubbed in, then wipe ckean with cosmetic pad or soft TP. It does take time and effort each time but so nice to start all clean again. I then reapply. I use generous amount of Ilex paste when going out, as it gives protection if leakage starts and I don't have immediate access to bathroom. I also think it stops... [ more ]
amistem Wait, does that mean that the paste won't come off when you wipe? Has anyone else had this problem? Loop ileostomy and J-pouch since 1/2015 and still have discharge from the anus, not just mucus but blood too. The doctor keeps saying it's fine, and normal. It had been happening only once a month or so, but now it's been more frequent. The first hard-formed stool tears the anus and then everything just burns after that with no relief. Also, I have heard people talk about cuffitis and... [ more ]
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J-Pouch ForumsGeneral Discussion
Blood Test and Vaccine for Chron's
DaveDave
Dave Here is still another link: http://journalstar.com/niche/n...6.html?mode=comments [ more ]
Jan Dollar Thanks Dave. That was useful. I was able to get the idea of what they were doing without joining the group. This vaccine is for the MAP virus, which there has been oodles of study and discussion over the past decade or so. It may work, but since they still don't know if MAP is the trigger, or one of many triggers for Crohn's, it is very possible that the results will be very limited (to those with MAP caused Crohn's). Still, it is encouraging to see some work in the area of prevention and... [ more ]
Dave If this is a scam, please let me know. Dave [ more ]
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J-Pouch ForumsPouchitis
Pouchitis
S Skinsfan31
CTBarrister I have had a CT Enterography and an MRI Enterography, and on both exams inflammation causing a stricture at the J Pouch inlet was visible. The MRI Enterography is the better of the two exams for diagnostics, from what I was told. It's a much longer procedure, however, when including the interval times of all the contrast plus the different sequences on imaging as they wait for the contrast to pass through the bowel. My MRIE was close to 3 hours long from when I got to the facility to when I ... [ more ]
Jan Dollar Oh, OK. Sounds like an obstruction or maybe paralytic ileus (The gut just stops moving). If you had a twisted gut or other complete obstruction, that would show on the CT. They don't like to scope if they think you might have a surgical abdomen. Jan [ more ]
Skinsfan31 Thank you. Ive been in the hospital for a few days now and thats all they done so far is a CT scan. Just in a lot of pain and have frequent urges with very little stool passing [ more ]
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J-Pouch ForumsHelp! Need advice now!
Swelling
ConniesConnies
Connies I talked to Dr. this PM. He said I possibly had a small obstruction, and that's what I think, too. As far as the swelling goes, he said it could be related to blood pressure (it was 120/80 after I talked to him), heart, or the fact I had major surgery, and if it persists to call my internist Monday. I have a physical every Nov., and heart has always been ok, so I'm thinking it's from major surgery. I will start elevating my feet more. I have compression stockings I could wear, too. Thanks... [ more ]
Jan Dollar It is not uncommon for there to be some dependent swelling in the legs after big abdominal surgery. Takes time for the congestion in the surgical area to resolve. Also, if you are anemic, you have less ability to hold fluid in the bloodstream. The key is to keep moving when you are up (working the leg muscles moves blood through the veins). When sitting, elevate your legs to prevent more edema (swelling). On the abdominal pain, if it is sudden or severe, go to the ER. But, if it is just an... [ more ]
Connies The swelling is pretty minimal today. No Jan I didn't have any leg pain. My main concern now is abdominal soreness, almost like post laprascopic surgery. My abdomen was really bloated and sore yesterday. My back even hurt. Today it is just really sore, with no back pain. Should I be concerned and hope that this, too, will pass? I did send my Dr. a couple of messages on the portal. I hope the staff reads them before the weekend! Take Care All! Connie [ more ]
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J-Pouch ForumsGeneral Discussion
Bee Pollen
Y ytcrockpot
Former Member I've been taking it for 2 days now. And so far I have not noticed any difference at all. And when I say that I mean there's been no positive or negative changes in my system that I've noticed so far. Everything seems the same as usual. I'm thinking about upping the dosage just to see if I can recognize any changes. [ more ]
Former Member I'm going to experiment with bee pollen, I'll try anything. [ more ]
Fight like a girl my daughter who has severe eczema was told at the co op to try bee pollen and bee probabilis so she did and I thought for sure we were going to have to take her to the E>R> she spent the whole night soaking her hands in cool water and her mouth and lips and tongue swelled. She had to take benedryl and it was a scary night. She had a 1 year old and didn't want to be in the e.r. so she promised me if she got worse she would go. So long story short, I wouldn't try it!!! She has never been... [ more ]
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J-Pouch ForumsGeneral Discussion
Meds v Flairups
LouJrLouJr
LouJr I believe you're correct, Scott, this occurred to me as well. He's a like-able person but after checking his credentials, I have my doubts about him. I then went to the Johns Hopkins web site and viewed a lecture on flair-ups and their treatment. As I watched it I was saying "Yes!" to myself repeatedly as the doctor spoke. I am currently examining backgrounds of gastroenterologist in my new location and will be meeting with a couple once this rod trip is over. Thanks for your input. [ more ]
Scott F I guess I don't really know what "flare-up" means to you. It seems possible that you and your current GI have different ideas of what's going on. Is this pouchitis? Has that word been shared between you, so he knows that's what needs treating? [ more ]
LouJr Thanks for the response, Jan. Since I had a great rapport with my original gastroenterologist, I guess I took it for granted when I moved that I would have a similar relationship with my new gastro guy. My mistake. I overlooked the obvious. [ more ]
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J-Pouch ForumsGeneral Discussion
upper and lower GI
Nice NurseNice Nurse
Jan Dollar My GI scopes a bit upstream when he checks my pouch. Maybe 6-12 inches. I usually do a light diet the day before and tap water enemas before leaving the house. But I have also done the phosphosoda too. It did no harm. Miralax is quite gentle, so don't worry about that. If you followed up with the doctor and he confirmed the prep, I would do it. Jan [ more ]
Nice Nurse So I compromised I did one dose of miralax (17 g) and clear fluids all day. Cleaning out just fine, nothing solid left in there. Tomorrow morning a fleet and that's that. thanks for the advice all. ") [ more ]
rachelraven Miralax will not hurt you. It's not a stimulant laxative. I've taken it, but prefer MOM. Kind of how prior to scopes or when I get a little too thick, I'll also use some MOM. Generally I take 1/2 a dose of MOM before bed, go NPO after midnight, and do a couple of Fleet sized enemas (but I dump out the fluid and use warm tap water instead). I have no incontinence issues, though, and can sleep through the night. "Our" systems are all different, too, just like those with colons, so you can't... [ more ]
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J-Pouch ForumsGeneral Discussion
Failure rates: Laparoscopic versus Open Surgeries
aka KNKLHEADaka KNKLHEAD
SwollenColon My surgery was robotic assisted, and completely closed. I have 6 small scars (less than 1"). No complications at all. 5 weeks post take down and the results so far are well beyond my expectations. Going 4 or so times per day, and I can hold it a pretty long time if needed. I actually went over 10 hrs. this past Tuesday between BM's (went 3x that day). I'm ecstatic with my outcome to say the least. [ more ]
Lincslassie Both surgeries Laproscopic takedown was Jan2014 all good here. [ more ]
TE Marie Mine were open surgeries 8 weeks apart and 6 months later he had to open the midline incision again to do incisional hernia repair, 3 open surgeries in 8 months. My husband told him he should have installed a zipper My take down was complicated by a large abscess he had to cut out under my original incision. I had to pack that hole of 2"Deep x 2"Long and 1.25 Wide for several months. It was a "dirty" incision and had to be left open to heal. During the hernia repair at least he closed that... [ more ]
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J-Pouch ForumsGeneral Discussion
sick sister trying remicade
MB Mountain Baker
mgmt10 My sister and I also have UC in common and now we both have j pouches. Hers 23 years ago and mine 5 years ago. It's great she has you looking out for her best intrests. And I agree with you....she should at the very least have a surgeon in mind that she would trust just in case. [ more ]
Mountain Baker Thanks for the replies. My UC was possible chrohns and I think my sister has the same diagnosis. I remember my doctor said I was in the gray area but we decided to call it UC because it was a better diagnosis for me to handle mentally. I just want her to have an excellent surgeon waiting in the wings just in case so she doesn't end up with peritonitis and 4 surgeries in 5 weeks which is what happened to me. Theresa [ more ]
Spooky My understanding is that at least 4-6 infusions would be required before any improvement is evident. So it would be too soon to gauge whether she is responding to the medication. I would press for a referral to a colo-rectal surgeon regardless, just to have that as a back up, but in the meantime there is no reason not to continue on the remicade. Your sister may in fact improve on it if given a fair trial, hopefully preventing or at least delaying surgery for a long while. Surgery is usually... [ more ]
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J-Pouch ForumsGeneral Discussion
Almost 5 years from takedown and bleeding
S samlc25
samlc25 Originally Posted by Jan Dollar: Even though you may not have cuffitis symptoms (other than bleeding) it could still be from the cuff. Now, if your GI confirmed there was no cuff inflammation by examination, then assuming it is from elsewhere makes sense. You aren't taking any NSAIDs or supplements that interfere with clotting are you? Jan No, I'm not. I had to take pain meds for a few years but I have been off of them this year. [ more ]
Jan Dollar Even though you may not have cuffitis symptoms (other than bleeding) it could still be from the cuff. Now, if your GI confirmed there was no cuff inflammation by examination, then assuming it is from elsewhere makes sense. You aren't taking any NSAIDs or supplements that interfere with clotting are you? Jan [ more ]
samlc25 Originally Posted by rachelraven: The blood may really be just from the cuff. What makes you think it's coming from somewhere else? Is it black and tarry (that suggests a bleed higher up). Because sometimes there is blood when I don't have cuffitis. It's pretty frequent. [ more ]
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J-Pouch ForumsGeneral Discussion
Gaining weight for surgery?
B Banks2015
aka KNKLHEAD A pretty easy one to get your heart in shape, which would be very important, is walking. While I may never be this lucky again, I walked about three miles a day as often as I could before my last surgery. After surgery and still in the hospital I felt like I could walk a very long distance without tiring, pushing fluids and the pole. It may not have been the whole reason, but I feel my recovery was very, very quick from a pouch redo. [ more ]
Jaypea Instead of concentrating on weight (which is just a number) why not get ready by being in the best physical shape possible? Increase your protein intake, do some physical conditioning, make sure your sleep/wake cycles are optimal, and condition the muscles in your body especially your abdominals. Practice deep breathing and coughing. [ more ]
CTBarrister By the ways when I had surgery I was about 10 pounds over my normal weight (due to massive Prednisone dosages) and my surgeon told me to lose that 10 pounds or he wouldn't cut me period and end of story. It was very hard to get it off and took a couple months, but I did it. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
jpouch pregnancy and meds. help!!
S seen
seen Cheers...everything you say makes complete sense. Its the NHS we're talking about so still waiting for an appointment. Appreciate your help greatly...helped give some perspective. Thank you [ more ]
Jan Dollar It is not uncommon to lose some weight in the first trimester. If it is any consolation, it is also typical to obsess and worry during the early months, especially if this is a first pregnancy. Since you have no control, worry is all that is left. Once she gets her diarrhea back in control, she'll be gaining weight. Has she not been examined by her OB/GYN? That is who should be advising her. The conflicting information is really the lack of information. Since no drug manufacturer is willing... [ more ]
seen Thanks for the quick reply. Yes we fully understand band have been weighing it up. Its just that there is so much conflicting information. Some people have taken loperimide as per GP and others told not too. My wife is eating well but not taking on weight, in fact she's lost 2kg and is down to 41kg (she's Japanese and naturally very small). We're praying baby is OK! Its all very stressful. �� [ more ]
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J-Pouch ForumsGeneral Discussion
Dietary Suggestions Helpful
TiberiusTiberius
GraceB I forgot to mention that I do take beano because I do get a tremendous amount of gas every time I eat thanks to Scott that recommended it. I do take protein powder and banana you mentioned you can not eat banana mixed with oatmeal. For some reason the shakes give me moor gas. Grace [ more ]
GraceB I found that in the 1st year of my take down surgery I could hardly eat anything. It seems I always have problems with food. As time goes by I am able to tolerate foods better. I know what to stay away from . I am on a constant antibiotic every day alternating cipro and flagy every two weeks and take vsl#3 every morning and in the evening I take antibiotic for constant pouchitis. I am able to eat vegetables that are not gassy and cooked well. I stay away from red meat it seems to bother me.. [ more ]
Tiberius Thanks for the replies everyone. I am seeing the GI doc next week and will be asking about other possible solutions. Thanks for all the info - will take all that into him. [ more ]
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J-Pouch ForumsGeneral Discussion
7 weeks into J-Pouch
ConniesConnies
Scott F I use the psyllium fiber before breakfast and dinner. If I were trying to gain weight I'd probably switch to after meals. I disagree with the advice to mix it with less water, but I know some folks feel strongly about it. The Metamucil wafers have *more* sugar than the sweetened powder, FWIW. I use the maximum dose of VSL, but that's because I'm always managing pouchitis. It might be an expensive waste for someone who's never had pouchitis, and may not need anything to prevent it. [ more ]
Catinthehat Just adding my 2 cents worth: Kegels are pelvic muscle exercises. You can find out more about them under "information" above here. It's difficult figuring out what foods are best. What is a problem for me may not be a problem for you. Your food diary is prob a good idea tho I admit I've never done it. I try to keep my diet simple and when I need to calm things down I just eat white rice cooked in extra water (about 3/1). I take the imodium before meals and straight psyllium fiber in a cup of... [ more ]
Connies Wow what a difference a day makes! No more tears! Guess I got a little over-confident. I'm strictly following the allowed foods, and keeping a food diary. I'm pretty positive the fresh strawberries and blueberries in the corn flakes(are corn flakes ok or should I avoid them? Any other dry cereal ok?) for breakfast caused all hell to break loose yesterday! Last night for dinner I had white rice, Swedish meat balls, and some brown gravy, and I slept like a baby all night, woohoo! This AM I had... [ more ]
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J-Pouch ForumsGeneral Discussion
pouchoscopy after effects
J JHendrix
JHendrix Yes, CT...all back to normal self the next day. I'll know what to expect next time. [ more ]
CTBarrister I think it is not unusual. In 48 hours you should be back to your normal self. In the past I was irritated after my pouchoscopies and my GI told me it was the prep (Fleet enema) so we cut back from 2 enemas to 1 and then I went to a warm tap water enema and had no irritation. In your case it could also be irritation from the actual procedure, the inflating and swabbing of the pouch, etc. [ more ]
JHendrix The surgeon said the pouch looked good in all aspects, not inflamed and no polyps. He seemed to be able to rinse as he went to get a clear view and there was not a whole lot of stool. I'm still uncertain about what is causing the watery stool. I was hoping the response would just confirm that it's normal. I guess I'll wait and see if it passes. I think sometimes I get worried too quickly. [ more ]
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J-Pouch ForumsGeneral Discussion
Hemorrhoids? Painful?
Kline84Kline84
Scott F Hemorrhoids can be quite painful, but they can also be painless, or anything in between. [ more ]
ColoradoGirl15 Originally Posted by ColoradoGirl15: I thought hemmaroids were the cause of pain but just had a scope last week. Symptoms are the same as Kline84. Initial findings are a 10 mm sessile polyp with some ulcerations located at the anus. I am being referred to a surgeon to have the polyp removed. Random biopsies were taken that day but the polyp resection couldn't be completed because of location and extreme level of pain. Was also told that an overgrowth of bacteria in my small bowel was the... [ more ]
ColoradoGirl15 I thought hemmaroids were the cause of pain but just had a scope last week. Symptoms are the same as Kline84. Initial findings are a 10 mm sessile polyp with some ulcerations located at the anus. I am being referred to a surgeon to have the polyp removed. Random biopsies were taken that day but the polyp resection couldn't be completed because of location and extreme level of pain. Was also told that an overgrowth of bacteria in my small bowel was the cause of recent weight loss 30 plus... [ more ]
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J-Pouch ForumsGeneral Discussion
Waking up to messes
N NancyM
Scott F Nancy, you'll get much better information if you tell us what you've tried already. [ more ]
Catinthehat Welcome. Yes and this subject has been discussed a lot in the past. You may want to try the search option to find previous comments about night time leakage, It has been a problem for me pretty much the whole time since take down 7 years ago. I always wear a pad at night. Tylenol #3 helped for a while (it's the codeine in it that slows things down). I currently use opium tincture, but there are other things that can help too. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch, now Chron's?
JM Jim Mulgrew
Semi Colon Hi, Another veteran here. Had my surgery in 2001. Several years with pouchitis controlled with Cipro. Been diagnosed with Chrohns for about three years now. Take Remicade bimonthly. Works well. Try not to over think it. Jerry [ more ]
clz81 Yes, this has been the case with many of us. In a nutshell, it can be hard to officially diagnose Crohn's. I was told about a year ago that I had Crohn's while I was in the hospital (before they got the biopsies back). The biopsies came back, and they didn't agree with that diagnosis so then I was told it most likely was not Crohn's. Then when I had surgery for my bowel obstructions, they were able to confirm I had adhesions and not strictures. More evidence against Crohn's, but it's not... [ more ]
Jim Mulgrew Thanks for the feedback everyone, good stuff, the initial pics showed the inflammation right up where the pouch and SI connect so I am hoping it is pouchitis only but like I said, I'll deal with whatever comes. They're going to take a closer look next week to determine what it is. Thanks again for the info and feedback, I hope I can provide the positive feedback to other users in this forum and contribute. [ more ]
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J-Pouch ForumsGeneral Discussion
Polyps in pouch
D DavieG
winter wish Hi Sounds exactly where I am now! Was getting to the stage I couldn't walk with the pain. Glad to come across your post. I have a polyp that needs to be removed and a stricture ( I think is at the anastomosis) that is going to be botoxed. Pouch and anal canal are inflamed/ulcerated. Dave you seemed to get great relief after. How many days were you off work? Thanks�� [ more ]
DavieG CTB - That seems an decent discussion you have had with your Doc. My only advice to you would be to go right back to him if you start sensing something is developing. I know that's kinda vague, but if you're anything like me you will notice things like increase in frequency, sense inflammation or increased (even more than normal) tiredness. In the mean time keep well and don't worry about it. The thing is I only really realised how ill those polyps had made me after I had them removed and... [ more ]
TE Marie DaveG, This is very interesting and helps me better understand my cuffitis pain. I've always said there must be a zillion nerves in the cuff as when my cuffitis is flaring I can't understand how it can hurt so bad when the total area of the UC cells in the cuff is probably no larger than a quarter! You've described it well here how had an 1/3 inch polyp made you feel. Much worse than the Princess and the pea [ more ]
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J-Pouch ForumsGeneral Discussion
Hemorrhoids? Concerned, should I be?
slightly_creativeslightly_creative
Jan Dollar From what I am reading, you are not even sure this is hemorrhoids. Rectal bleeding that is persistant requires a call to your GI or surgeon, rather than guessing. While cuffitis ususally is associated with pouchitis symptoms, bleeding without other symptoms can be an early sign. Jan [ more ]
Scott F Hemorrhoids will deposit blood on the surface of formed stool, as well as drip blood into the toilet. With the less-formed stool of most J-pouchers the blood can seem to be mixed with the stool. Plenty of things can cause hemorrhoids, and they're pretty common, but straining to defecate will tend to make them much worse. [ more ]
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J-Pouch ForumsGeneral Discussion
Bleeding and Urgency
A asroch87
Jan Dollar Since this seems like more than a minor flare (I agree that it sounds like cuffitis), you probably need to be scoped to confirm what is going on. Oral high dose steroids are not usually a first line treatment for cuffitis. Topical mesalamine or hydrocortisone is more typical. I would ask about going on one of them before tapering the prednisone, so it is working before the withdrawal. Jan [ more ]
Scott F The blood makes this sound like cuffitis, which is like ulcerative colitis in the 1-2 centimeters of rectal tissue left behind to attach the J-pouch to. Oral steroids might have been worth a try to get the flare to stop, but you don't really want to be on them long-term if you can avoid it. Conventional UC meds, especially administered rectally, are your best bet for managing cuffitis. If it can't be managed medically, a surgical option is pouch advancement with mucosectomy. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ileostomy Takedown Complications
T Tiff 06
Tiff 06 Thanks all for your advice. I actually did switch over to the Cleveland Clinic after my first set of failed J Pouch surgeries. I am a patient of Dr. Remzi's so I don't think I can get a much better doctor. I will definitely look into alternate pouch options - maybe that will work out well for me. I am currently just trying to tough it out for a few weeks to see if the combination of physical therapy and Botox will work for me before I explore other surgical options. My tolerance for being in... [ more ]
Toddi1973 Hi Tiff, I second the idea to see the specialists at Cleveland Clinic. Their colorectal surgery team down here in Florida saved me from a permanent ileostomy after my first j-pouch (done by a good surgeon but not specialist in the j-pouch department) was set two inches above the rectum, leaving me with 2 inches of Colon. Those two inches then developed high grade dysplasia and it was determined that I will need a permanent stoma. Fast forward a second and a third opinion and I ended up with... [ more ]
BillV I can relate somewhat to the decisions that you are facing since I had to have my j pouch removed due to high grade dysplasia near the sphincter. One thought is to get an evaluation of your condition at Cleveland Clinic since they specialize in dealing with pouch problems. A second thought is to research the k pouch and BCIR (similar procedures) that avoid the need for an outside bag. These procedures are not widely known and are useful for those with failed j pouches and problematic... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Butt burn be gone!
T TaniaNovak1234
Ljz Tania, i agree that Ilex paste is the best ever to prevent butt burn! I order direct from the manufacturer in US- I order a jar for home, and tubes to carry with me. Initially, I used it ever time I went to bathroom, cleaned myself with Vaseline and then a cosmetic pad, and reapply. Ise generously if I am leaving house, and it almost make a plug. Crazy- I know, but it does seal leakage. At home I use lighter coat just to protect skin, and once your healed you won't need every time, though if... [ more ]
Toddi1973 Hi Tania, I am 6 months out and I can tell you its gonna get better. But it's still a rough road. I am now at 4 good days, 3 bad days on average per week. Best advice I can give you is to stock up on "Ilex Paste". Amazon sells it. That is the only barrier cream that I have found to work for me. YMMV but I tried pretty much everything that is supposed to help with Butt Burn. But Ilex is different, it's like a latex seal for your skin. Good luck, Toddi. [ more ]
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J-Pouch ForumsPouchitis
Is it ok to not treat pouchitis?
clz81clz81
lrdo I am curious about your stiff pouch comment from possbily untreated chronic pouchits. Is this reversible what kinf of symptoms would a stiff pouch cause? Originally Posted by jeane: I have chronic pouchitis and do what you are doing often (have gone on and off antibiotics for the last four years)). Last round I lasted several months with an occasional cipro here and there if I was starting to feel pouchitis acting up. I got hit really, really bad over the last few weeks and it has now taken... [ more ]
TE Marie I've been on antibiotics all this year as my pouch was so inflamed they needed to do a balloon dilation February 9th. I then changed what I was doing and stopped taking VSL#3DS twice daily while taking antibiotics. I had it all spaced out so I took it 3-4 hours in-between antibiotic doses. They also changed my antibiotics and I dropped Flagyl and started taking Xifaxin. It's very expensive at $1,056 for a 30 day supply of 60! Good thing I past my deductible for the year after just paying... [ more ]
Jan Dollar I think it is fine to treat based on symptoms, particularly since you say it is only mild pouchitis. ALL pouches have some minor level of inflammation, so I would not get too worked up about it. Sure, try to limit your carb intake the best you can, but don't beat yourself up about it. We are all individuals with individual tolerances. That said, knowing your past struggles with chronic pouchitis, I would hope you'd be alert to pouchitis creeping back into a more active state, and try to at... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Rectum pain
MN marc nolan
thumprhare Do not strain. Remember you haven't used those parts in forever. You anus is hooked up and your brain, butt, and new plumbing have to figure out how to work together. I think talk to your surgeon if no issues look into pelvic floor PT because increased tone. I know my mom had an ileo for a year and when reattached had very frequent small passing for months...she had seventy five percent of her colon! Imagine us, no colon...and your anus not used for a long time. I say always make sure it... [ more ]
See 1 reply...
J-Pouch ForumsPouchitis
Help please
R Ryan3000
dawnmarilynn @ Ryan- Btw, forgot to mention that if they determine you have an overgrowth of Candida, they may suggest taking a systemic anti-fungal med like Diflucan. It is a very, very, strong medication that can cause liver damage so I would suggest getting to the root cause of your gut biologics being off-- not enough good bacteria? were they recently killed off by antibiotics? Is your stomach acid high enough? It has to be high enough to facilitate digestion and signal your stomach to release... [ more ]
dawnmarilynn @ Ryan- Is it possible to get your GI doc to admit you to the hosp and set up IV fluids so you can get a bowel rest, and they can also do a scope of your pouch? This put my husband back to "normal". He was not allowed anything by mouth-not even water though, for 2 days. With IV pain medication, he was not miserable like he was (and sounds like you must be!!). No one can function like that. The pain would be from cramping, but itching is likely to be an overgrowth of candida, which is a yeast... [ more ]
stellababy thanks ill try that [ more ]
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J-Pouch ForumsGeneral Discussion
Question about Health Insurance Coverage
RN Roberto Nocolon
Scott F If you're trying to get pouchoscopy covered as preventive care I'd suggest comparing it to flexible sigmoidoscopy, which is much more similar in time and equipment than colonoscopy. Some providers simply code it that way to avoid foolish responses by insurance companies. Calling it a colonoscopy, though, might be interpreted as insurance fraud. [ more ]
aka KNKLHEAD Scott makes several good points. My bet is the biggest hurdle is getting the insurance companies to understand that a pouchoscopy is pretty much a colonoscopy. Insurers probably think you are getting a scope inserted into an ileostomy bag! When I went for a pouchoscopy a few years ago, the radiologist asked if my pouch was inside or outside because at the time I did have an ileostomy. [ more ]
Scott F Pouchitis has no impact on mortailty, but IBD in general brings out the stupid in actuaries. I long ago abandoned trying to get reasonable life insurance. I try to save money aggressively, which over (a long) time can reduce or eliminate the need for life insurance. [ more ]
See all 16 replies...
J-Pouch ForumsHelp! Need advice now!
Went to GI today
MewowMewow
Mewow Thanks Rachel. I have my ct scan tomorrow at 8:00am I am crossing my fingers for some good news. I will post the results. Sharon [ more ]
Mewow Thanks Bill, yes I agree maybe I should hold off on the dating scene for now. I have my ct scan tomorrow at 8:00am I am crossing my fingers for some good news. i will post the results. Sharon [ more ]
Mewow Originally Posted by Mewow: Originally Posted by BillV: Take some deep breaths, relax and try not to think the worst about events that may never happen. Above all, do not think of yourself as being “spoiled goods”. I had similar concerns about returning to the dating scene after being widowed, and made it a priority to present my positive points and delay bringing up my medical issues until later when the time appeared to be right (there are no rules for that, just a gut feeling – pun not... [ more ]
See all 7 replies...
J-Pouch ForumsOstomy & Skin
Ostomy Pouch Covers
P PoucherInTO
PoucherInTO Hi Lambiepie! I am so happy that you are getting a lot of use out of your covers I have a bunch of them too, and you are right, they are great at keeping sweat at bay - I hated the feeling of the bag getting warm against my body. I hope all is well [ more ]
Lambiepie I just ordered three more covers. I can't say enough about these, especially in the warm weather. They keep the sweat away from my bag, fit beautifully and don't create a lot of bulk as the material is thin cotton. Love them! Thanks, PoucherinTO, for the info. [ more ]
Lambiepie Clever1, anything that makes our ostomies cool is good! [ more ]
See all 14 replies...
J-Pouch ForumsPouchitis
Is this pouchitis?
L Lflower1991
Lflower1991 Thanks CTBarrister, it's good to hear that it can be done for such a long time. Well I'm happy to try whatever is necessary to keep the pouch healthy. At the moment I'm managing to get by with my symptoms, but it's usually when the irritation becomes unbearable I need to get back on the anti-biotics. However I am definitely managing to reduce the effects of the symptoms at the moment, compared to say 6 months ago. I've been trying probitoics and an aloe vera supplement before bed which might... [ more ]
Scott F When pouchitis is properly controlled by antibiotics your bowel function is likely to be "pouch-normal" (or a little better - antibiotics tend to thicken things up). I experience no disability whatsoever. The antibiotics are well tolerated by most, but have the usual common side effects (e.g. some women will develop yeast infections), and some folks don't tolerate certain antibiotics. Most pouchitis clears up with a 10-14 day treatment, but for some of us it's a permanent thing that needs to... [ more ]
P_O'Gorman I think this pouchitis for sure. May I ask, does it affect your ability to work? [ more ]
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J-Pouch ForumsGeneral Discussion
Working after J-pouch surgery
D DLC
Former Member I'm miserable with it. It's embarrassing making all those trips to the restroom. I try to starve myself to death but that that doesn't always work. Especially when fellow employees are chowing down on pizza, laughing and having a good time. That's enough to make this dog scream. [ more ]
Shainy I went back to work (office job) 4 weeks post takedown. Eased back in at first but full time after a week. I also prefer looser output. I find a coffee or two a day helps to flush the pouch out. I think I read on here this can also help prevent pouchitis [ more ]
Virdent I went back after about a month casually and full time at four months, I use to work on the railway as a conductor and had to resign from that position due to the fact that I did suffer increased fatigue that I didn't really notice until I went back and tried to do the 8-10 hour night shifts and I could barely make it half way through the shift before I was wishing I was in bed even with energy drinks! I use to make it through these farily well back before UC and my Jpouch surgeries, that... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Should I consider takedown of my ostomy for a J- pouch?
MeganEMeganE
Spooky Hi Megan, I was in a similar situation as you. I had my colon removed as an emergency. I was to ill to even consider a j-pouch at that point (the goal at the time was just "get the colon out so you don't die and we'll worry about the rest later" so there was no time for such decisions). My rectum was left intact, though it was still diseased and would have to come out eventually, so I knew I'd need more surgery regardless. But I had been so ill and had such a complicated recovery from my... [ more ]
CeeeeCeeee When it was time for my takedown (after a year with an ileostomy) I actually cried on the operating table. My surgeon told me I could change my mind and not go through with the takedown. I chose to go ahead even though I really loved my ileostomy. That was in 2002. I have never regretted my decision. I'm quite a bit older than you are but I understand the fear of trading the known for the unknown. It will be an adventure! I think you will always "wonder" if you have made the right choice if... [ more ]
Megan O I've had my pouch for 29 years. I have never had pouchitis. I can hold it fine and have never had an issue with incontinence. My pouch recovery did not take years. I was afraid too, my poor butt was just so happy to not have to poop anymore I wasn't sure about having my takedown either. Best decision ever, I have never regretted it. Decisions made out of fear aren't always the best ) Whatever you decide, best wishes! [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
anastomotic leak surgery
U UjohnjC
msbea430 Originally Posted by Jan Dollar: After a sinus has been in place long enough, it is lined with epithelial tissue similar to the inside of your pouch. After it has been determined it will not heal closed, they open the sinus along the entire tract, making it part of your pouch. This eliminates the problem of stool getting trapped in the sinus and causing infection. If they can accomplish it via endoscopy, it is much simpler, and an easy recovery. An open procedure or one requiring dilation of... [ more ]
Jan Dollar After a sinus has been in place long enough, it is lined with epithelial tissue similar to the inside of your pouch. After it has been determined it will not heal closed, they open the sinus along the entire tract, making it part of your pouch. This eliminates the problem of stool getting trapped in the sinus and causing infection. If they can accomplish it via endoscopy, it is much simpler, and an easy recovery. An open procedure or one requiring dilation of the sphincters has much more... [ more ]
TE Marie ❤️
See all 8 replies...
J-Pouch ForumsGeneral Discussion
3 months post takedown
S Shainy
ATXGuy I had my takedown on 10/27/14 and was cleared to start working out right around Christmas, but I had a complication, and they had to re-open the midline incision after the takedown to fix it. Frequency is still pretty variable 6 months and change later, but it's always pretty manageable. I seem to cluster in the morning, waking up around 5 or 6, then have to go again between 8 and 9, sometimes a third time in that window. After that, it's usualy once or twice during the work day, after... [ more ]
Shainy It took about 6 weeks for the wound to fully heal and for the discharge to stop. I do have an indent around the Stoma site and a very slight bulge above it but it's not very noticeable. I have a round scar there but I like it, it looks like a bullet wound and its a nice reminder to me of what I've been through. I happily went topless by the pool and beach on my holiday last week. [ more ]
SwollenColon Yea, I can't wait to start lifting again. I've got about 30 lbs to get back. Follow up #2 with the surgeon is 3 weeks from today, and that'll put me 6 weeks post take down. I think she'll tell me it's o.k. to start training again. Did you guys have any weirdness with the stoma site? Mine is healing nicely, but I've got a divot that's big enough to get the end of my pinky finger in. No one seems concerned about it, but I'm afraid it'll heal like this, and I'll essentially have another navel... [ more ]
See all 7 replies...
J-Pouch ForumsWomen's Health & Pregnancy
..
JennyH(Hurley is my Dr)JennyH(Hurley is my Dr)
shawanna24 Dr. Moodley in Fairview delivered both of my kids. He took me on as a patient too so that I didnt have to see a regular OB at the same time. [ more ]
Bugs I had my pouch surgery at Cleveland clinic and dr fazioFazio was my surgeon. He recommended at the time for Gi follow up Dr. Bo Shen. When I became pregnant with my twins they recommended seeing Dr. benito alverez at the clinic as well. He was amazing as a no gym and delivered my babies section knowing of the pouch and haing a colorectal surgeon in house if need be just in case. He was very well educated with this pouch procedure. I believe he moved to an Akron hospital which I was just told... [ more ]
Lee33 Jenny, How cool we both are probably going to have the same doctor! I am about an hour and 15 minutes away from Cleveland and Hillcrest. Is that where you are seeing her? Is she your only ob because I haven't seen her yet but they told me she is high risk. I'm seeing my local ob for first appt next week and then I guess deciding between him and then Dr Perni when I see her a few weeks later. That is awesome that a colorectal surgeon will be on call. Where are you delivering? Which Cleveland... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Colonic J-Pouch Surgeons
H hend2975
thumprhare I had Dr. Molly Cone at Vanderbilt. Excellent surgeon AND a great bedside manner...a rarity. [ more ]
Jan Dollar How far is she willing to travel? I see you are in Oklahoma. Is your mom also there? I should think that most colorectal surgeons are familiar with a colonic j-pouch. how much colon does she have left? Has she discussed this revision with her surgeon? If he can't do it, he probably refer her to someone who can. The Mayo and Cleveland Clinics are always a good choice. Jan [ more ]
See all 2 replies...

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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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