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J-Pouch ForumsHelp! Need advice now!
Pelvic Floor Dysfunction
L lauren972
GinLyn My mom is doing the therapy right now; thankfully it is covered by her insurance. And yes, it does help -- or at least, it is helping her! Having said that, the exercises are really easy and not much different from the kegels I was taught to do originally. The website from Winter Wish looks really great and has pretty much everything my mom is doing right now! So maybe give that a try first? Much luck, Gin [ more ]
winter wish hi, I have pelvic floor dysfunction. Most of the problem is frequent diarrhoea which aggravates the PF and causes it be to hypertonic. Check out this website where I attend physio, it give really goods steps for how to do the exercises. http://www.pelvicphysiotherapy.com/exercise-guide/ L [ more ]
lauren972 Thanks appreciate the advice. [ more ]
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J-Pouch ForumsGeneral Discussion
DONT GET DISCOURAGED - THINGS DO GET BETTER
bederyparisbederyparis
Sharon W Update: I had takedown last Thursday. Was in hospital until Sunday. Overdid it yesterday thinking I was superwoman, Just relaxing today. I think it is going pretty well getting up twice a night before the alarm rings to go to the bathroom. I have had some close times but so far been able to hold it except once yesterday. I will keep reading and posting as I progress. [ more ]
golflady1119 Sharon...yes, BMs had to start before they would give me any food at all! That happened late Saturday evening (about 24-30 hrs after takedown). I was never on a special diet afterwards. Except for the first day, I did not sleep any more than normal (very different from the first surgery where I napped almost everyday for a month or more!). I also never took any prescription pain meds after leaving the hospital (I live alone and didn't want to be loopy!)...just Tylenol and Advil. Also if... [ more ]
Sharon W ❤️
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J-Pouch ForumsGeneral Discussion
Decision on getting J-pouch
W wirlygirl
Dean227 Hi Im planning to go for pouch surgery in January as i had to have an ileostomy last year after i exhausted all the drugs available. I hope it works well as im in the construction industry and need to be at work [ more ]
Former Member Well, I had my Stoma for many years before I had my J pouch created, so you have plenty of time to make your mind up or complete your studies first. Body image was a huge factor for me and juding by your usernane, I assume you're female and therefore, I also assume, due to the type clothing young women like to wear, body image and appearance is far more of a concern. (sorry if my last statement offends) I was intially diagnosed with UC but when my colon was removed, it was decided I may have... [ more ]
BillV Welcome to this forum! My first surgery was in 1981 at Mayo Clinic in Rochester. My surgeon did a straight connection with no pouch (I was one of their first patients with this procedure), but experienced major frequency problems. In 1983, I returned to Mayo and had a j pouch constructed in a one-step operation. While recovering from the operation in the hospital, I received a registered letter from my employer (I was a VP of Finance at a large hospital) saying that I was fired. At the time,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch problems during night
KR Katie R
Vanessa It is either pouchitis which is treated easily or if you have that and upper GI pain it can be your gallbladder having alive atop it. Pouchitis is awful but comes with the territory. I didn't have it until 16 years after my takedown and pregnant so my advice is flagyl. It's a nasty tasting med but it works. [ more ]
stillgoing Hi katie R. I had takedown surgery just over a year ago and had no nightime leakage for about the first 8 months or so. All of a sudden it seemed I was starting to have discharge overnight. Not every night but most nights. I remember I was sick with a cold and took nyquil before bed, well that was horrible, I made such a mess. I will never take nyquil again and highly suggest no one else take it with a pouch. I also have pain when I feel food moving through my small intestine and my belly... [ more ]
Scott F It sounds like pouchitis to me. If so, a 10-14 day course of Cipro or Flagyl should fix you right up. [ more ]
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J-Pouch ForumsHelp! Need advice now!
New kind of flare up or something else
S Sonja6
Vanessa I vote it's pouchitis and it needs to be treated with Flagyl. Just get refills and treat yourself. Tastes awful like you're sucking pennies all day and nausea, however it works. [ more ]
rachelraven People, our population included, sometimes just get GI bugs. Recently, a friend with a colon was down a week with one. We are not spared, you know? We just go quicker to bile stools and liquid stools being devoid of a large bowel. It just sounds like some sort of bug. I generally can get through them if it's just diarrhea, when I can drink. But with nausea and vomiting, I head out for some IV fluids and IV Zofran. I get dehydrated right-quick if I can't drink enough. If in 24 hours that... [ more ]
AllyKat I had a Noro virus that lasted 10 days. Hope your better! [ more ]
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J-Pouch ForumsGeneral Discussion
How do you deal with nightly incontinence/leakage?
E ElSur
CTBarrister Levsin at bedtime, Depends disposible underwear, if pouchitis related treat the pouchitis as well. [ more ]
ElSur Well, for me it is managable with a sanitary pad when I'm healthy. I've found out that Immodium (two pills, 4mg in total) reduces the amout of leakage but that there is still some. I just wanted to see how others deal with it as nightly leakage obviously is a well known problem when having a J-Pouch. I was looking for some other tips than the ones I already know When dealing with something like that I guess everybody tries to find the best solution and with some input from others and some... [ more ]
Scott F I can' tell what quantity of leakage you're dealing with, but two things that I do are 1) I don't let pouchitis go untreated. Nighttime leakage is often a first sign of pouchitis, and 2) I take Lomotil at bedtime, but not during the day. Others have found a small fatty meal (e.g. a spoonful of peanut butter) helpful at bedtime. Good luck. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can't control bowel movements 4days post takedown
ItsanewworldItsanewworld
Itsanewworld Hi Sharon, absolutely happened with me as well the last couple of days since I've been home. I was going up to 14 times on the weekend and it was hard to handle. Took site bath to cool anal area. Sacred the hell out of me. I went ahead last night and took Metamucil. I also reached out to my surgeon to ensure its ok because while I had it on the handout I received upon discharge, I am told every surgeon is different in what they may want you to apply. So far today has been better. A little... [ more ]
Sharon W Oh wow! I thought I was doing well and then a blast of uncontrollable watery bm that had me covered by the time I took 4 steps to the bathroom. Help. I did take stool softener with pain pills this morning. Anyone know about this? Just part of the healing? Or what the new normal will be like? [ more ]
Terradon Hi there! So, wow... yeah, This was the hardest time for me. I was not prepared for how difficult the "hardening off" period was, or the regulation of the bowel. So, as dumb as it may sound, the first thing that I would recommend is to talk to your body. You just went through a trauma for it, and tell it that you know it's been rough and that you are going to take care of it as best as you can. That you are on its side. Then ask it to be on your side and help you figure out what you need to... [ more ]
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J-Pouch ForumsGeneral Discussion
Issues with Emptying, been on every medicine so far
dgtracydgtracy
dgtracy Sounds embarrassing, aka like many of the other tests. I'm going to contact my new doctor and schedule an appt. See what he says then bring this up. Thank you all. [ more ]
Jan Dollar It is like a barium enema, except with thickened contrast and they do flouroscopy x-ray while you empty your pouch. Jan [ more ]
dgtracy What is involved with a defagraphy? [ more ]
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J-Pouch ForumsGeneral Discussion
Allergic reaction to Apriso
MM Mama Mia
rams1380 My reation to Apriso was flu like symptoms, raging diarrhea . My Gi just prescribed me Pentassa. My fear is the same med prodicing the same issues. Gi says its a different way to deliver medicine [ more ]
Jan Dollar Pentasa has the same active ingredient as Apriso, mesalamine. While allergy or acute intolerance are not common, they happen. Pentasa is not as delayed release as Apriso, so there may be more systemic absorption, which I think would increase your risk of a reaction. How about forgetting about mesalamine altogether and try something different like Imuran, methotrexate, or antibiotics? Mesalamine is no longer considered very effective for Crohn's. You can also try biologics if the other oral... [ more ]
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J-Pouch ForumsGeneral Discussion
Do I need to take Immodium?
M MCH
Spooky I agree with others. If you are happy with your frequency, there is no real advantage to taking a bowel slower. In your case, since you seem to have good functioning, it may in fact have the opposite effect. At one point, I was taking imodium 2 times daily because my surgeon recommended it after takedown. But I actually don't take imodium regularly anymore and I haven't for several years now, as I don't like my stool to be too thick. I also have adhesions and I've had several partial... [ more ]
CeeeeCeeee I prefer liquidy stools as long as I continue to have full control. If I want to bulk things up, Metamucil does the job! Usually I take nothing. Having liquidy stools insures my J-pouch empties easily and quickly without needing to push at all. My J-pouch is "old" and so I never need to use a barrier cream. [ more ]
Jan Dollar I am with Scott. Unless you have high frequency, I see no point in taking Imodium. Your frequency is on target. But, adding some bulk for thickening could help your butt. Slowing your gut too much could cause some real problems. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
prolapse
J JHendrix
Scott F As I understand it, a mucosectomy is the most effective treatment for mucosal prolapse. Perhaps they can sometimes heal on their own with a diversion ileostomy, but it might be worth asking about the statistics. If I were to choose a mucosectomy I would want a very skilled and experienced surgeon. [ more ]
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J-Pouch ForumsGeneral Discussion
Stoma hole left open to heal
M Momma
CTBarrister That is true about scars. In addition to my 4 bowel surgery scars I have a fresher scar on the bottom of my neck from thyroid cancer surgery in July 2015. It's barely visible now, but my surgeon said use 70 sunblock on it whenever outside. I put Aveeno 70 sunblock on it and it really helped I believe. There are also scar creams. The one recommended on the thyroid cancer board was Mederma to which I had a reaction (possibly from the onion in it), but I had good luck with Scarguard. These... [ more ]
Jeffsmom Jeff had a stoma hole as well. I just asked him and he said about 4-6 weeks. It is freeky to look at. Wigged me out for sure! The scar is a bit nasty. Here is a thing about scars. Don't go out in the sun. For the first year keep it covered. By next year it will look completely different. I know this from my open heart surgery my surgeon told me to keep it covered. I did and you can hardly see the scare. It's smooth and white looking. Jeffrey is a bit heavy, so his scar is a little thicker... [ more ]
Mysticobra Lol... I got the money for nothing scenario! Back to square one. No regrets. Richard [ more ]
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J-Pouch ForumsGeneral Discussion
A curious question about gas...and other stories
ClariceClarice
Chris1985 Clarice I am exactly the same. I don't have chronic gas but when I do get gas I am unable to release it. I have to lay on my back with my legs in the air. I'm unable to release it sitting on the toilet also. It does make socialising more difficult going out with friends etc. At work the majority of my colleagues know about my condition, I work outside alot and they know if I'm on my back not to come and help I'm perfectly fine lol. It was embarrassing at first but then I thought bugger it if... [ more ]
Clarice Ah, ok, I thought you meant simple carbs. Fruit & veg I'm already careful with, and pulses are certainly my nemesis! Such a shame it's all the lovely healthy food I love. I get very low in vit D & zinc. [ more ]
Jan Dollar Yep! Simple physiology. This is why Gas-X and similar drugs are fairly useles for us. Those things are mostly for stomach gas (belching). http://www.mayoclinic.org/dise.../causes/con-20019271 Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Scuba Diving
AlexisAlexis
Alexis Thanks I just figured I'd ask. I can go 3 to 4 hours without having a BM so that's not my worry that much it was a just in case. I'm guessing most driving won't last that long. I don't have to take anything to slow my BMs which is nice [ more ]
Scott F Alexis, for me the joy of having a J-pouch is that I never really "have to" have a BM, unless I've already put it off for quite a while. I do prepare carefully in the morning before diving, eating very lightly and taking Lomotil, but that's to avoid the need to use the marine head on the boat, rather than concern over any bathroom emergency while under water. The dive itself lasts perhaps 20-40 minutes. I do select dive boats with toilets (or at least I try to), but I don't tend to use them. [ more ]
Alexis My main concern would be if you have to have a BM while down under. [ more ]
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J-Pouch ForumsK-Pouch Korner
Alergy to adhesive
L Laney
Kara Fred Hi Jennifer- Your last post sounded 100% better and I am glad you feel better. I know I sure did when I first had my pouch. Sometimes it gets overwhelming with all the different supplies you can try- there is so much out there, but everybody is different. Mini-pads don't work for me (I wish they did as they are so inexpensive!). The nursing pads are the best for my output and comfort. All in all you will find your groove and everyday will get better. I am so shocked and disappointed to know... [ more ]
skn69 Hi JenJen, Such wonderful news! I remember my first zip-up pants post op when then removed the indwelling cath...they dropped to the floor (they were the ones that I arrived at the hospital in and I had lost close to 30lbs...)still it was nice to see my hairy legs in something other than skirts. (ps...if you keep a couple of those old fashioned diaper pins around, you can pin the leg bag to the inside of a wide skirt (do not pierce the bag itself of you will spring a leak!) Some answers to... [ more ]
JenJen I'm wearing pants! This is newsworthy because they are not one of the 4-5 elastic waist joggers, sweats, or athletic pants that have been in regular rotation the past 4 weeks. Furthermore, I wore them to the movies! I owe it in part to all of you for responding so quickly and so helpfully -- Thank you so much! You all wrote something that made me feel less alone, answered a question I had or a question I didn't know I had. I've heeded all of your advice and the past 24 hours have gone much... [ more ]
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J-Pouch ForumsHelp! Need advice now!
leakage all day
L loralie78
chiromancer It will likely get some better, I had the same issue. Some night time leakage is not unusual, daytime leakage is a whole nother thing. I didnt have that much problem at night but I am not a deep sleeper. But during the day walking around was terrible. Bland diet helped, Lomotil minimally helped. Tincture of opium helped the most, it allowed me some mobility. Putting a cotton ball in the end of the anus helped. Warm water enema to clean out what is in there helped. There was no doubt in my... [ more ]
loralie78 Thanks so much for the advice. I have been using Metamucil and taking immodium. My diet is quite bland. I have followed the doctor's advice to a tee. I just need some sort of hope that this is not my life for the next 40 years. I also have started the exercises. [ more ]
Scott F It's still a very new pouch - whatever you're experiencing now doesn't predict what you'll experience over the next months and years. That being said, there are things you can do that may help. You haven't said what you're already doing, which invites redundant advice, but I'll offer up some things that may help: 1) Even if you haven't been doing kegels multiple times every day for the past six months it's not too late to start. 2) I used Metamucil from the day I got home, with good results. [ more ]
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J-Pouch ForumsMen's Health
5 weeks post takedown... Odd peeing question. Plz help
S SonnyJ215
butmybutt I had the same issue. I would only pee when I had to dump out. I am about 2 years out from the take down of my ileostomy and have just recently have been able to stand up and pee without having a bm at the same time. I know this that the meds that I take, tincture of opium and morphine sulfate have a direct effect on my ability to urinate. I started to taper off the morphine sulfate and started to pee standing up. There have been so many changes in the way that my body changes and adjusting... [ more ]
Roland333 I am 8 years out, it took my body 2 years plus to adjust to standing up and peeing and then not having a BM afterwards or at the time. It isn't something that is immediate, it takes time, and I am betting everyone is different on recoup times as well. Hydration levels are key here, being consistent, watching your intake and when you drink are now PARAMOUNT to your recovery, and maintaining the ability to be stable. I had to create a regimen where I take in at least at a minimum of 60 oz of... [ more ]
John Curtain I just posted my story in the rant section of the J pouch forum. My experience is the same. If I stand and pee I need to have a BM straight away so I always just sit. I go to the toilet about 10 times each day so I seldom feel the need to pee as I am releasing urine so often.. [ more ]
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J-Pouch ForumsGeneral Discussion
How long to pee after takedown
M Momma
skn69 Has he managed to pee yet? Even though I am a girl, I find it very hard to pee post op...(this last time it took me about 12 hrs of agony) so I used all of the tricks that my parents used on me as a kid...running water, sipping water, pouring water, putting my fingers in a glass of water...making peeing sounds...somehow it all stimulates the brain and reminds it of the job that it has to do. I always end up with a boy's urinal because bedpans suck. Can't use them, never could. The nurses are... [ more ]
CTBarrister If there is an IV hydrating him he should need to pee. If they have to catheter him that is not going to be a very pleasant experience but don't tell him that. If he isn't peeing that's what they are going to do and you will not want to watch or be in the room for it but don't worry because he will survive it. [ more ]
Former Member 8 hrs seems long enough, cath now. I dont remember needing a catheter after my takedown but I did after pouch creation. I guess it depends as to whether your son is consuming enough fluids, if not, then maybe he doesn't have the need or urge to go. However, as said, 8 hours is long enough, best to be on the safe side and be cathetered. [ more ]
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J-Pouch ForumsGeneral Discussion
Anal pains, and a few other questions after surgery
FM Former Member
Janiep Before my takedown there all sorts of test to make sure that the reversal would (hopefully) be a success. One of the tests was done by my surgeon. A rectal to make sure that there were no adhesions inside the rectum. She actually opened something ( and I'm sorry I just don't remember what it was but it hurt when she did this) that needed to be open to eliminate future problems. Takedown does take awhile until your body adjusts to the new plumbing and even though I do go a lot I can always... [ more ]
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J-Pouch ForumsGeneral Discussion
Reasons for bleeding? (sans Pouchitis)
T Teddy92
Teddy92 Hello everyone - thanks so much for your responses! If anyone else encounters this issue, please feel free to add your much appreciated insight to the thread. Scott F - I really appreciate that differential - I will try and ask about those possibilities at my next appt! It is honestly so strange, as I will go 5 BMs without blood and normal appearance, and then maybe 1-2 with an orange tint and reddish pieces (that look like tiny shards of carrot almost) floating around that look like bloody... [ more ]
Nish123 I have had my take down suregy 2 months after j pouch construction and I am almost 2 weeks into after take down . My number of BMs are pretty normal . The only problem I have is that I get blood in stool sometimes . Sometimes it's just streaking but I got big drops of bright red blood today which is freaking me out . Also I feel pain in my rectal area and Labias if I walk or stand for more than 10 minutes . It gets better upon sitting . My surgeon and Doctor Doesn't know the reason for it . [ more ]
duck11 It's been over a decade since I had my surgeries, so my memory is foggy...! but I do recall having bleeding for a substantial amount of time post-surgery. It sort of dwindled away over time, going from daily, to occasional, to not at all. No one seemed overly concerned about it and it resolved on it's own after a couple of months. My surgeon did say it could be remnants of surgical things, and my GI even suggested it could be the rectal cuff finally calming down from disease. Either way, it... [ more ]
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J-Pouch ForumsMen's Health
Erection after 1st surgery
ItsanewworldItsanewworld
Roland333 That is cool, I would just let him know that he is desired, hearing it, and being intimate are two different things. You can give him standard lip service with nice encouraging remarks, but I speak from experience, a guy wants to know by feeling you work WITH him, can't get any more blunt than that. If you back off to much, he will start to wonder? Am I not good enough, not man enough, not etc, etc. Most guys, not all, but they REVOLVE around this ability to please and be all that a guy can... [ more ]
klynan24 Roland333 I agree, I've been being aggressive but not overly, and although he doesn't get an erection right away, he eventually does. It's been 4 months since take down and he gets better every time. I've read where men who have this same issue find they have low testosterone and can get something to help that, but I haven't brought it up to him. I don't want him to be more self conscious than he already is. I'll give him a while longer and see how he does. Another symptom that he has of... [ more ]
klynan24 ❤️
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J-Pouch ForumsGeneral Discussion
A comprehensive "Guide to Pouch Life" sticky post?
A aliiien
Lambiepie I've gotten more true day to day help from everyone here than all of my medical professionals put together. Jeffsmom, I'd like to add butternut squash soup: soothing, thickening and delicious! [ more ]
iHateColitis I've thought about this as well for some time. When searching through the history, you come across a lot of extremely useful recommendations that were made in the past, from diets to supplements etc., that would be extremely useful if compiled in some form. [ more ]
To_Fart_or_Not_to_Fart ❤️
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J-Pouch ForumsHelp! Need advice now!
Pain and bleeding
KD Kate Deaken
Jan Dollar Good luck! Jan [ more ]
Kate Deaken Thank you so much for your input I really appreciate it, I've felt so lost I'm glad to have this group, everyone understands. My surgeon just emailed me back 5 minutes ago asking me to come into the emerge at that hospital it's quite a trip so I am headed there in the morning. Thank you again ! Kate [ more ]
Jan Dollar Sounds like an anal fissure to me, which is a tear in the anal canal. Usually it is associated with straining against constipated stool, but for us it is due to frequent liquid stools. As you know, fissures are extremely painful. The pain causes spasms of the sphincters, which delay healing and make for difficult emptying. Oral pain meds do little to nothing for the pain. Topicals are what is needed. Hot sitz baths are the primary treatment, so you are doing the right thing. Also, thickening... [ more ]
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J-Pouch ForumsPouchitis
Dr Bo Shen
S Sonja6
Sonja6 Thank you so much!! It really does help. Good luck with your surgery [ more ]
StarryNight The Cleveland Clinic offers financial assistance for extreme financial hardship as well as Special Medical Circumstances for treatment that can only be provided by CC. You can get more info online www.ccf.org/financialassistance or call 866-621-6385. I am a new patient of Dr Shen and l live 1,000 miles away. His staff works very hard to accommodate patients from all over the world. After the initial consultation, they will try to schedule all tests & procedures within a week or so in... [ more ]
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J-Pouch ForumsOstomy & Skin
drinking
GinLynGinLyn
RDSmith Dark chocolate is full of anti oxidants... that is what I keep telling myself! [ more ]
GinLyn HA! I've actually been craving chocolate like crazy the past week; just having even a bite takes care of it. And I am eating well, just trying to get the drinking sorted. I don't drink too very much first thing in the morning until after I change the bag, just so I don't have too many dribbles while changing. After that I drink regularly. Just so much to get used to again! Been just over two years since my last stoma; amazing how much I've forgotten... Gin [ more ]
Lambiepie OMG, I remember drinking massive amounts to get off the IV. My sister accidentally spilled out my hat full of urine, proof for the nurses that I was drinking enough, and I actually started crying......Sorry about your blowout. Yes, liquids will come out as pure liquid, but your output should thicken up over time and so whatever you drink will offset that. I drink water or seltzer with a shot of Gatorade and I aim for at least eight glasses a day. As long as your urine is pale and not smelly,... [ more ]
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J-Pouch ForumsGeneral Discussion
Immodium: dependency vs. efficacy
I iHateColitis
iHateColitis I read some anecdotal stuff online (but from people with IBS) about it losing its efficacy. Though I wonder if it was just a case of the people thinking it lost efficacy because they forgot what normal was once they went back to normal. I also wonder how the effects differ in someone with IBS and a colon and someone with a j pouch. [ more ]
Jan Dollar From what I've read, there is no tolerance to Imodium.I've been taking it for >20 years. I took the maximum dose for about 5 years, then tapered down since then. I now take 1-2 per day. Jan [ more ]
Scott F Imodium doesn't seem to become less effective over time, even with daily use. Even the opiates used for pain management don't seem to lose their gut slowing effect over time, though the pain relief does slowly disappear with chronic use. [ more ]
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J-Pouch ForumsGeneral Discussion
Had my first beer with my 4 month old jpouch... Help please
S SonnyJ215
Former Member ❤️
Jan Dollar Sure. Butt issues plus oral contrast can both cause problems. Jan [ more ]
CTBarrister I can drink all liquors except red wine. Beer is no problem, although with the exception of a few trips I have made to local microbreweries with friends, I don't really care for beer too much. The issue I have with red wine is I think due to the tannins in the red wine. When I consume red wine I have a watery, explosive diarrhea. No other problems though and although I am technically on a 4 drink a week limitation due to taking methotrexate, I have gotten away with cheating on that... [ more ]
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J-Pouch ForumsGeneral Discussion
New Cipro Warning
S Sonja6
Scott F While it may be true that Cipro can have delayed effects, the vast majority of side effects will occur while on the medication. But if your breaks from Cipro are brief then they probably won't help you tell if the problems are related to Cipro or not. If you can arrange a couple of weeks off Cipro you might get better information. Have you tried other antibiotics? Have you had any non-Cipro successes? [ more ]
Sonja6 It's hard to tell cause it's kind of always in my system. And everything that I've been reading says symptoms can pop up even months later. [ more ]
Scott F Sonja, do the symptoms get better when you are off the Cipro? That could help clarify whether the symptoms are side-effects. I've been on Cipro continuously for a fair number of years now. It's a trade-off, of course, but I haven't had any serious side effects, fortunately. They would have to be very serious indeed for me to prefer continence issues. [ more ]
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J-Pouch ForumsGeneral Discussion
Psyllium
T TCM
TCM GMR, thanks. I want to add/reiterate some points: I wear protection at night (Depends, covered by underpants (to make me feel like I'm not wearing protection...psychological for sure but I look better in front of my wife in briefs than in Depends And I have a pad under the bottom sheet and another on top of it ... and I wrap my "butt" area with a lightweight pad and towel, so if I do have an accident it is minimized in terms of soiling the bedding. I wear a thin pad in my underwear during... [ more ]
gmr I wish I would have joined a forum a long time ago. It is nice to discuss some not so pleasant issues with people who really understand. Thank you so much for your replies. I was getting discouraged with my frequency and leakage. I have been avoiding doing some of the things that I love to do (like going for long walks). I need to get this under control and just needed some encouragement. Thank you so much for listening and responding. I believe it is time to go back to the doctor. I am... [ more ]
TCM GMR: I take about the same amount of Loperimide as you although mine are tablets. Are there capsules available? I also share your unease about staying overnight in friends' homes. I travel quite a bit and take my "defense kit" with me (extra supplies, extra lightweight easily washable/dryable underwear, a pad to wrap around my waist to protect bedding in case I have an accident.) I have been a in a test phase to determine if a sacral nerve stimulator might give me some relief. Based on the... [ more ]
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J-Pouch ForumsGeneral Discussion
question for people with leakage of stool from behind
PouchomarxPouchomarx
Frances I leak about 75% a day. I were a pad from one end to the other. If I can't get to rest room it irritates my rear end and skin gets raw a alot of pain while walking anywhere. Was told My 15 year old j pouch 4 years ago has become weak due yo so many infections. Causes painful spasms and lose of control. The leakage is horrible. [ more ]
Pouchomarx tried them, don't like the adhesive on my hairy butt..lol [ more ]
Mrs P There's a product called a Butterfly pad. My friend gave me one to try. I haven't yet but it's an adhesive pad in the shape of a butterfly. You fold it in half and insert between your "cheeks". The adhesive holds it in place. Especially for this very problem. She bought them at Walmart. Good luck!! [ more ]
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J-Pouch ForumsGeneral Discussion
Surgical question
skn69skn69
skn69 Just fine now that the waters are receding Gin, We were concerned but not (yet) scared....How are things doing on your end? How is the health? How are you feeling? Are things finally improving? Sharon [ more ]
GinLyn Sharon -- Haven't been around much lately and just saw this post. I hope you are doing well and managing to keep dry? Gin [ more ]
Hermione ❤️
See all 13 replies...
J-Pouch ForumsHelp! Need advice now!
pain after bowel movement.
P pammieskrh
Sonja6 I have horrible pain when my pouch is emptying. Like right at the end. Feels like my pouch is ripping away and it's going to come right out. I know it's not of course. But that's the best way to explain it. Other than that I have pretty constant adhesion pain throughout my abdomen. Plus a pretty steady string of partial blockages. I had my pouch scoped about 6 months ago and they said it looked good and all the pain is probably because of all my adhesions. And I'd be hard pressed to find a... [ more ]
pammieskrh Then pain has been going on for the past nine months. J pouch worked perfectly for the first 25 years. Then I had abominal surgery fot adhesions that has formed around my small intestines and not in the j pouch. Had a pouchoscopy two years ago with repair of anal fissure. Surgeon created anal vaginal fistula trying to repair anal fissure with porcine tissue. . so now I have an additional problem. pain in abdomen is after I have a BM. Going to make an appt to see a gastro doc next week. [ more ]
Jan Dollar Your choice of pain meds may be the culprit. Even though your last scope looked good, you can easily have damage not in the area scoped. Since you had ahesion troubles in the past, this can also be another suspect issue. Lysis of adhesion surgery seldom takes care of all of them. Plus, new ones can form from the lysis procedure itself. What does your GI doc say about your pain? Jan [ more ]
See all 6 replies...
J-Pouch ForumsOstomy & Skin
Revision Surgery
Nicole23Nicole23
TE Marie I've read many people on here discuss their revisions. Try to do a search on different key words and you could look at previous posts on this subject. I am a Mayo Clinic patient and found them to be awesome. Everything was explained very well by my GI and surgeon. I tried being diverted to a permanent ileostomy and letting my j-pouch rest but it didn't work so 2 months ago had it removed. It sounds like you have a construction problem that can be fixed. I understand your worry. Any... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
vaginal anal fistula
P pammieskrh
GinLyn Unfortunately, for me the answer was no. Several failed repair attempts later, I am back to a permanent stoma. There are a couple of people who did have fistula repairs which worked, but they involved muscle graft surgeries. You might want to do a search for that and see what pops up on this board. Others on this board live with their fistulas using seton drains or other things. Neither of those procedures were good options for me, so I chose to go the stoma route. Feel free to message me if... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Hemorrhoids anyone?
S stpaulmom
stpaulmom Thanks so much, I'll talk to my doctor about trying this. Numb sounds really good right now!�� [ more ]
Janiep I stopped using preparation H and switched to a prescription 5% Lidocaine ointment. For some reason it worked. I also take Lomotil to cut down on frequency. Most days it works but the hemorroids have definitely improved! The Lidocaine numbs the entire area and which as you know brings such relief!!! My surgeon suggested these changes. Good luck!!! [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Is it really a "cure"
duck11duck11
rachelraven Yeah, there's MJ that's all "head" and gets you stoned... And there's other strains more "body" that do not impact you that way as much but help with things like inflammation, etc. There's also CBD oils. The world needs to get onboard with this: if from the lowly poppy we through history got opiates, we need to do the same with MJ. It isn't about getting high, many do not get you high, education is key. [ more ]
skn69 Interesting...I didn't know that you could take the 'stoned' out of it... I guess that they can do just about of everything nowadays. Sharon [ more ]
TinCan Let's not forget that there are now a variety of different types of cannabis. For medical uses, many people (including myself) utilize high CBD content varieties which are thought best for inflammatory disorders. These lack the psychoactive side effect - at least I have never felt stoned (and prefer it that way). Part of the revolution in the medical use of cannabis has been the emergence of products containing a spectrum of THC:CBD ratios. Using cannabis need not mean getting high any more. [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
Job searching
C canlafre
canlafre Thanks. I got this job weeks after my jpouch surgery. i never mentioned it for years as things were great. The last few years have been rough for me, it still feels like its day to day. plus I have gained so much thanks to the steriods and the inability to eat healthy. im telling my boss tomorrow.So if I dont find another position I will be home with my kids for the summer. Which I would love. [ more ]
skn69 Don't know, I have been self-employed my whole life but yes, I would wait until they hand you a contract to start negotiating insurance and perks...pointless until they and you know if you guys are compatible...(sort of like discussing kids before you know if you like the girl) Sharon [ more ]
ytcrockpot Good luck, ive had the same issues. I've decided to file for disability [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Constant Cough
G GraceB
mary beth My daughter has had a dry scratchy cough on and off since takedown 1 1/2 years ago. No idea what it could be, I wondered if it could be related to autoimmune issues but hoping not. We moved (actually the very same day that she ended up in ER, was admitted and 2 weeks later needed surgery) so maybe it is something in the new house she's allergic to. She was away at college and just came home a few weeks ago. I asked if she had the cough at college to and being a typical teenager she didn't... [ more ]
GraceB thanks for input Donutz [ more ]
donutz I had a cough for 9 months last year and went through all the tests etc. Took steroid inhalers for a few weeks and it cleared up completely. Would recommend. [ more ]
See all 6 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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