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J-Pouch ForumsHelp! Need advice now!
Gas
A abillusmc
Scott F Gas can have different causes. Some people get good results with Gas-X, Beano, or Digestive Enzymes. Others reduce or eliminate gassy foods (e.g. beans, broccoli, ...). Sometimes gassiness is a sign of SIBO, and sometimes gas is just more disturbing because of pouchitis. These last two causes generally need a doctor's assistance to diagnose and treat, at least when they are unfamiliar to you. Gas is a bigger deal for J-pouchers since most of can't fart while clothed without unfortunate ... [ more ]
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J-Pouch ForumsPouchitis
C.Tbarrister/diet
R Rebe0505
Rebe0505 i cannot help s to the resistant starches..when i emailed dr. shen he said it was just a theory for now.. for starters however a lot of us have had some good results with scd..diet..check that out..remove all starchy carbs and sugar not natural as fruit..pretty much all protein good..meats poultry ,fish eggs..veggies are good..fats such as olive oil,fruits,certain hard cheeses like cheddar,swiss..home made yoghurt..very easy to make..yoghurt maker can be ordered from lucys kitchen as well a... [ more ]
JHendrix I have tried to get a better understanding I have looked it up and am no further ahead. Is someone able to provide a link that helps explain it in relation to the j pouch? I have found academic papers which just baffle me (http://edepot.wur.nl/49267) and other sites that seem to be more about blood glucose and diabetes. As you can likely tell, I'm feeling frustrated. It's exacerbated by feeling increased bowel urges and cramping this morning. I don't know what to eat and what not to eat. [ more ]
Rebe0505 hi best to just look it upon internet..just did myself and one guide to resistant starches pretty much outlined it very well..as to my issues..sibo ..it appears it is still not been shown that resistance starches flush out bad bacteria..and deepening can give pone with compromised gut bloating,gas,cramping ..but some people have indicated some success with it.. [ more ]
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J-Pouch ForumsGeneral Discussion
Multiple Fistulas and Abscesses
resres
res I guess I'm wondering if they have talked about removing the pouch and going back to the ostomy. Would that take care of the issue or will it just reoccur another place? I'm having a bit if trouble with continence, probably because one of the Fistulas and the abscess is going straight through my sphincter. Thank you both for the information! [ more ]
n/a Dr. Shen injected doxycycline into my fistula tract in an attempt to create scar tissue and close it. After 3 attempts and no changes to the fistula, he referred me to a surgeon at CC who put in a seton; this was 2 years ago now. If this is what he would like to do with your fistula, I would specifically ask how many times he has used this technique on fistulas, and how many times it was successful, or is it just in "trial" stages. He was pretty convincing when explaining how the doxy works,... [ more ]
rachelraven I have a simple intrasphincteric perianal fistula that started as an abscess. I have a draining seton, because my surgeon feels that surgery there could render me with incontinence because of the previous J pouch surgery. I am completely continent now. Overall I'm frustrated with things, but I suppose it could be worse. My new GI is reluctant to call it Crohn's, because overall, my innards look too good, and pathology only came back for mild inflammation. So the seton stays for now... [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics for SIBO
SavannahSavannah
AllyKat I seem to be doing good with store bought and home made probiotics. I've 24 hour yogurt and kefir) along with a low carb, low sugar diet. I also switch around the probiotics as par my doctors advise. I also kicked started my system with a 6 day course of fecal transplant after a three week course of xifacan for SIBO [ more ]
Scott F I chose to continue VSL while being treated for SIBO. The treatment seemed to go fine. I *think* the bacteria that overgrow in SIBO are quite different from those included in most probiotics. [ more ]
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J-Pouch ForumsGeneral Discussion
Does butt burn ever get better?
BebeksporBebekspor
MJC I find that applying a thick layer of Vaseline or A& D ointment right before a movement helps protect the tissue. I use Balmex afterwards. When I feel spasms and/or pain I sit on my heating pad. [ more ]
lholdem Hey ljz, What's the name of the oval pads you're using? I saw an ad for the butterfly pads in a magazine (looking at continence ads in my 20s, yay!) but they looked EXPENSIVE. [ more ]
Bebekspor It has been a few weeks since I posted, and I'm happy to say that my butt burn is almost gone. We have a handheld shower head in our guest bathroom, so I've been popping in there for a quick rinse every day. Still have butt burn on heavy output days, but it's nothing like it was 3 weeks ago! Almost 3 months out of takedown here! Katie [ more ]
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J-Pouch ForumsGeneral Discussion
question????
Holly MHolly M
MJC Re: question???? [ more ]
rachelraven However, things have been going alright. I started occasionally taking a Mag Ox. That helps. Magnesium pulls water into the bowel. I do better with a looser stool. I've upped my water tremendously. I'm avoiding all gluten and starchy foods. No nuts, mushrooms, corn, peas, quinoa, high fiber, Chinese veggies... I found some trigger foods in FODMAP I'm avoiding too. Purple grape juice, 4-6 oz in the morning helps, too. I also drink dry red wine about 2 glasses 4X a week. I know my body will... [ more ]
rachelraven See my thread here... http://j-pouch.org/eve/forums/...1071921/m/3087013076 [ more ]
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J-Pouch ForumsPouchitis
Blockage
K Kratzer777
Jan Dollar Things should simmer down in a few days. Your gut takes a while to calm down. It does not mean the obstruction is ongoing. If you feel like things are improving, they probably are. It is normal to worry about reoccurrence. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bartholin Gland Cyst
ksrksr
Mahshelley Has your doctor considered this May be the beginning of a fistula? I had what they thought was a Bartholin cyst that was drained then it came back, drained again, came back, surgically removed, then turns out it was a non draining fistula. That fistula is now draining and the cysts are still showing up. You may want to get the discharge tested for fecal matter. [ more ]
Pluot Did the GYN think it was a bartholin gland cyst? Gynecologists see them quite often, and they are usually right at the bottom of the vaginal opening, not 1/2" away. Not meaning to scare you, I'm just not sure if this is all adding up. Personally I had a similar experience and it wasn't a bartholin gland cyst, it was just a kind of random cyst on the perineum. Bartholin gland cysts are more a nuisance than anything else. My GYN told me that she gets them a few times a year, even. I believe... [ more ]
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J-Pouch ForumsGeneral Discussion
morning blahs
GinLynGinLyn
Mahshelley I feel the same way. Mornings are a "no talk zone". People around me know I don't like to be bothered the first hour I'm up. My advice is to get into regular clothes as quickly as possible. Let light into your room. If I loaf around in my sweats all day in the dark, I find it just makes things worse. Beyond habitual things like that, I am on a anti-depressant (pristiq) and it's really helped while I'm going through this. I know it's not for everyone, but for me, behavioral and dietary... [ more ]
Dort I liked what everyone had to say. For me, after speaking with my family doctor she suggested I temporarily go on an anti-depressant. It takes the edge off the sadness I was feeling after going through all the medical issues and surgeries and hospitalizations. It takes a couple of weeks to kick in but what a difference. Once my j-pouch issues get resolved I will wean myself off. Until then, life is okay. [ more ]
TE Marie I quit beating myself up over it. I was forced into retirement due to disability. I make all of my appointments in the afternoons and some days I don't change out of my night gown and house robe. If I over do things one day the next or the next few days I might not be able to get out of bed much. Yes I am depressed but my body is also in a constant state of pain, they go hand in hand. Some days are worse than others. I'm older now and as I don't work out side of home I don't need to take a... [ more ]
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J-Pouch ForumsGeneral Discussion
What are my options??
S sally85
sally85 Also has anyone had a mucosectomy done at at marks hospital in harrow, England? And how has it been? I'm at that hospital at the moment and I'm thinking they don't preform that here :/ [ more ]
sally85 Ohhh I see, that makes alot more sense to me now, that's why the consultant said they remove it all, thanks so much jeane do you know how good the mucostectomy is? Is there less control with it? Has anyone had a mucostectomy?? And how has it been?? [ more ]
jeane My undetstanding is a mucusectomy entails removing the rectal cuff and hand sewing the pouch lower in the anal canal. [ more ]
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J-Pouch ForumsPouchitis
rebe update on my diet and sibo
R Rebe0505
JHendrix I have been trying to follow this thread and I am totally confused by resistant starch and how it fits into the SCD. I have looked it up and am no further ahead. Is someone able to provide a link that helps explain it in relation to the j pouch? I have found academic papers which just baffle me (http://edepot.wur.nl/49267) and other sites that seem to be more about blood glucose and diabetes. As you can likely tell, I'm feeling frustrated. It's exacerbated by feeling increased bowel urges... [ more ]
Roni* Lol! [ more ]
AllyKat Not just any starch RESISTANT STARCH Bobs potato starch work up to 4 T slowly if you don't want to add cold pasta, rice, beans, etc. Google you'll see a list of foods. [ more ]
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J-Pouch ForumsGeneral Discussion
random Q: pouch advancement
GinLynGinLyn
jeane Good luck Gin. I hope this solves your problems. Keep us posted please. [ more ]
GinLyn Yes, it is specifically because of the fistula damage. The rectal cuff and upper part of the rectum are compromised -- what fun! Guess I'll just have to ask about what happens when I'm admitted for the pre-op stuff! Gin [ more ]
TE Marie Since you have fistula damage your surgery might be different than jeanne's. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
J-pouch, pregnant and diarrhea!
D Danishgirl
lholdem CONGRATULATIONS! So exciting. I am now just 10 days away from my delivery date - I also had a flare of symptoms during my pregnancy (including diarrhea the whole time... I wouldn't mind a little constipation). It took a while to diagnose for various reasons, but turns out it is pouchitis which is now being treated. My advice to you is get it checked out and treated as soon as possible. Because I let the pouchitis go too long, I had a lot of trouble gaining weight when I needed it. [ more ]
clz81 Doctors used to tell me when I had UC that with pregnancy, about 1/3 of people will experience positive effects, 1/3 negative effects, and 1/3 no change. That might go for the J-pouch as well. You are more susceptible to getting pouchitis and bowel obstructions when you are pregnant so keep that in mind. The surge in horomones SHOULD cause your digestion to slow, at least in the first trimester. Doesn't mean you'll experience that necessarily, but for me, I was down to going once or maybe... [ more ]
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J-Pouch ForumsGeneral Discussion
First case of pouchitis
ccanepa456ccanepa456
Kushami Your mum is trying to be helpful, but you should only make major changes to your diet under advice from a medical professional e.g. surgeon, doctor or dietitian. Antibiotics aren't "bad", they are a serious medicine for a serious problem. Remember that your doctors have studied for many years, and that their recommendations are backed up by many studies and government oversight. [ more ]
Scott F Most cases of pouchitis clear up fully with 10-14 days of antibiotic use, and don't come back very often. Some folks, like TinCan (and me) have to stay on antibiotics, but even that generally works just fine. [ more ]
TinCan As far as I can tell, alternatives are few (I have chronic pouchitis and have been taking cipro more or less continuously for about two years now). I have heard on this list of people radically changing their diet in the manner suggested by your mom. I personally have not gone that route because, like you, I just want to live normally. People have also tried bismuth based products like Pepto Bismol and claim it has helped. I personally have been thinking about trying humira if I can't get... [ more ]
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J-Pouch ForumsGeneral Discussion
excessive sweating/ over active nervous system after j pouch
V viking87
Jan Dollar Wear a hat? That's a good one! If this was not serious, it really would be funny. While it may seem like it, medical professionals do care, and they hate being stumped almost as much as you. However, since they are not suffering with it, the motivation is not the same. Since this is not a life threatening thing, it gets pushed to the back burner. But, for the sufferer, it is extremely debilitating. Plus, for you, it could be dangerous, since you are more at risk for dehydration without your... [ more ]
viking87 Thanks for your info, I had a vertical MRI done of my head to check for pituitary tumors, negative. This whole thing is getting so frustrated getting billed for basically using their resources when I am doing all of the research and footwork, they haven't suggested anything and simply say, they don't know and offer brilliant groundbreaking medical advice such as " have you tried wearing a hat with a headband under it to keep the sweat off of your eyes?" No doctor, I honestly not not... [ more ]
Jan Dollar Pretty much everything that crossed my mind has been suggested and/or tried. I do think you are on the right track of sympsthetic/parasympathetic system disruption. It can be triggered from a variety of sources and and disruption at any level within the reaction chain will set it in motion. My husband suffered from episodic hyperhydrosis that started basically out of the blue. After some testing, the assumption was panic (anxiety) attacks. Who knows what the first triggering event was, but... [ more ]
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J-Pouch ForumsGeneral Discussion
blockages every few weeks??
dgtracydgtracy
Olive Oil I have chronic obstructions and have had to seriously monitor my food...I'm really close to having to puree everything but for now I just avoid all raw veggies and fruit unless pureed in a smoothie and there are only a handful of veggies I'll go near even when cooked because broccoli, mushrooms, brussel sprouts, etc. cause such problems. I am VERY careful and just know what my body can handle. Some day I may have surgery to try and repair this stricture or whatever is causing them but with a... [ more ]
MJC My pouch is 20 years old and for the last 6 months I have had similar problems. Bloating, cramps at first I tought it was pouchitis. Today after exam it was stablished that my cuff has narrowed and cannot acomodate anything too latge going thru. Therefore it all stays in the pouch until it liquifies, which ecplains the bloating and pain. I'm scheduled for "stretching"next week. Surgeon said that he might have to do that a few times...a month apart.He thinks that the pouch might have twisted... [ more ]
Jan Dollar Not the best of news, but at least it is better than getting the brush-off and told you are fine!hope all goes well without complications. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain Pain Pain!!
P phonix2g
GinLyn Could be an internal hemorrhoid or a bad fissure. Could also be very bad pouchitis, believe it or not -- I used to present with this type of pain when I was struggling with persistent pouchitis. Do you have any numbing creams such as nupercainal? Do sitz baths help at all? Why the wait until Friday? I'd try to see if you could get in earlier or -- if not & you are in such horrible pain -- go to the ER. Gin [ more ]
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J-Pouch ForumsGeneral Discussion
coffee
U UjohnjC
CeeeeCeeee Same habit as CTBarrister! Love my Keurig and French or Italian roast. The stronger the better. My pouch is happy with its daily dose of coffee. [ more ]
CTBarrister I have had 2 Keurig cups of coffee (total 17 ounces, the max that fits in my mug) every morning for many years. I prefer dark roast coffees and I am on a rotation of 3 different ones that I like. I only drink coffee in the morning and switch to herbal tea after noon, although occasionally I will get a decaf with lunch. [ more ]
Spooky First and foremost, keep in mind that there is no universal list of "yes and no" foods for pouchers. We're all different. In my case, I've always been more of a tea person (in fact I drank gallons of it before my surgery, and still do!), but I would enjoy the occasional morning coffee or dessert latte from time to time--until I figured out that coffee gave me almost instant diarrhea with both the ilestomy and again with the pouch. I haven't tried drinking it in years; I suppose I could... [ more ]
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J-Pouch ForumsPouchitis
Really struggling
SavannahSavannah
rachelraven When my outlet narrowed, and I needed a dilation, I had symptoms similar to yours: couldn't go or couldn't go enough, trapped gas I could only pass in contorted positions, MISERY (I was begging my surgeon for an ostomy, it was so bad). You could have a stricture, like I had... Did he do a rectal? My surgeon said my outlet was the size of his pinky. I have had dilations under anesthesia, and I'm good, not my past great. But good. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Advise i think i did something that i should not have done.
FrancesFrances
TE Marie I'm glad you are finally feeling better Frances [ more ]
Frances TE Marie, Thank you so much i will get it tomorrow. Yes the cipro is doing the trick thank god. Hope you have a wonderful day Frances [ more ]
TE Marie I hope the Cipro has taken hold Frances. I use Calmoseptine when I need it and get it at Walgreens. I bet it's at CVS too. I've had to ask at the pharmacy for it in some states but it is OTC. [ more ]
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J-Pouch ForumsGeneral Discussion
well I had my ultrasound
S Sonja6
TE Marie It would have been nice if they would have just admitted they didn't know if it was simple or complex instead of blowing you off with a referral. Plus who hands a patient a phone number and says good luck! Doesn't the referring doctor call the specialists office so you get in right away! I'm glad you have a GI to take care of this for you. My C/R surgeon removed my ovaries when he took out my colon, at my request. I'd already had my uterus removed years ago and the ovaries had quit working... [ more ]
Scott F I'd suggest finding a good urologist - I agree that a GYN is a poor choice. Perhaps your GI can help you do that. There ought to be a CT scan in your future, I'd guess. Good luck! [ more ]
Sonja6 Well they say I have a renal cyst. But there not telling me if its simple or complex! And when I asked that they just said they are going to refer me to someone else!! I then asked if the back pain I'm having is associated with it and they just blew me off! So they called back with where they want to refer me to, they gave me the doctors name. It's a OB!!! Why would I go to a OB for a renal cyst!! Especially one that didmt see a grapefruit size complex ovarian cyst! Ridiculous! This is why I... [ more ]
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J-Pouch ForumsOstomy & Skin
irritation from adhesive remover wipes
GinLynGinLyn
Pluot I can't speak to the Marlen brand but with Hollister and Coloplast (sorry, the only ones I've used), there's no need to remove all the adhesive -- as long as there's no output on what's left behind, it's fine to pile new adhesive on top of old. Provided it's clean (wipe with damp rag) and dry (air dry or use a hair dryer on 'cool'), the adhesive should stick to itself. [ more ]
GinLyn Sharon, which disolvant do you recommend? The one I tried STUNG like no one's business! (The oil worked great to remove the adhesive, though!) Gin [ more ]
skn69 oil. Any body or baby oil....apply gently with a cotton ball or piece of gauze and rub using tiny circles...then you need to remove the oil with a very mild disolvant or everything will slip right off of you...Not a good idea! Baby lotion can work too.. Sharon [ more ]
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J-Pouch ForumsOstomy & Skin
hot tub
DH Donna H
oonja ❤️
Donna H It's an interesting thing that I can go a few days afterwards!! I do not, however, go with a new pouch. Maybe I will test the waters - :-) [ more ]
Cataja I have been in a hot tub with no problems...I do usually end up changing my wafer shortly after. I probably wouldn't go in if I was wearing my last wafer and waiting on a shipment...lol. [ more ]
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J-Pouch ForumsGeneral Discussion
Sudden night leakage and spasms/cramps after 10 months
A Anthonyv
Pluot Sounds like diversion pouchitis -- pouchitis that is caused by not having stool passing through the pouch. So, ironically, your takedown would (probably) make this better, not worse. Diversion pouchitis can happen to anyone who has a diverting ostomy, even people who don't have IBD. Your surgeon can evaluate this -- they might want to do a scope to confirm, or try treating it first. Treatment would usually be rectal meds, like mesalamine suppositories, Cortifoam (steroid foam), etc. [ more ]
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J-Pouch ForumsHelp! Need advice now!
the BEST J-pouch surgeons Recommendations needed!
J JCAW
George Skordis ❤️
JCAW Wow, so much has changed for me since I initially posted in 2012. I was so sick, newly allergic to Remicaid, with an idiot for a GI and a brand new baby that did not sleep! Thank you, Chuckus, for the recommendations. I should have thanked you then but I was a little out of it. I am glad to have them on file. It was a very scary time for me, and finding this community and getting people's responses was very comforting. I was burned by a bad GI at the time, and was at a lost what to do. I had... [ more ]
Dutchie-in-Mobile Hi Charlie, I will definitely get in touch with you when I have a chance and get out of this hospital..... To everyone else, It looks like I have to update my info, but I'm actually located in Mobile, AL. So, I want to make sure that I find the right group to do this and don't mind traveling, just not across the country. The closer I can get to home, the better it is. Thanks all. Eric [ more ]
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J-Pouch ForumsHelp! Need advice now!
Multiple prolapse sites?
M Megals
Megals Thanks Jan. I'm torn because I'm so glad that the test at least showed what's been causing these symptoms, but also nervous about what the solution will be. I am assuming most of the issues were closer to the rectum. The radiologist saw the prolapse(s) when he used the rectal barium. Then after he saw those he said he wanted me to also drink the barium and insert it vaginally. Not sure what he saw after those portions of the test. I was able to get an appt with my surgeon for this Thursday. [ more ]
Jan Dollar Impossible to predict, but generally repair is possible. Could be as simple as tacking the pouch to the posterior wall or as complex as a complete redo. Bad as it sounds, and I am sure your thoughts are going crazy, at least you know there is an identified problem that can be addressed. Nobody wants more surgery. I hope your follow up with the surgeon is soon, so you can start focusing on improved function. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Stricture problems
I ian337
jeane Same exact issues here. Been dilated a number of times and stricture always recurs. I also have to go several times in a row to empty and can be very painful at times and have chronic pouchitis due to it. Seeing my surgeon Monday as GI is suggesting pouch advancement. I have cuffitis and fissures from all the straining to empty pouch. Very, very painful. No Chrohns as of this time. I guess you should revisit your surgeon it GI as they may opt for another dilation or determine if inflammation... [ more ]
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J-Pouch ForumsGeneral Discussion
Cholangitis? WTF?
J JeffDC
Murray I went through the whole transplant workup just to find out the PSC Doc who said lets wait and see was right. cost me $6000 to find out that the Liver wasen't in as bad of shape as the transplant teem hoped. c [ more ]
JeffDC Tech, you've been put through the wringer. I hope some good news happens for you soon. My last MELD score was a 12, but I am not on a list. So I have my fingers crossed. A lot of the lessons I learned when fighting UC are helpful, and you comments are in line-having the right mental outlook is key. [ more ]
techwrench It truly is a roller coaster ride.Back in 2004,my gastro. at the time said, "by next summer you will probably need a transplant,so we need to get you listed". That's when I went through the transplant evaluation,and listing process.PSC is a difficult disease to navigate,and predict.With the high risk of cholangio carsonoma,I think that's why doctors are over cautious and jumpy.My hepatologist said they don't want to prematurely transplant anyone,because with the risks,and the side effects of... [ more ]
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J-Pouch ForumsGeneral Discussion
Healing times for different closures of stoma
W wooly-bobs
wooly-bobs I'm 2 weeks post op on Monday next week so I'm not far behind you. I'm also considerably more healthy than last time so hopefully I will heal quickly. [ more ]
shnwilkins Of course everyone heals at different speeds but im two weeks post op and I had my stoma left open to heal as well and it is already about halfway healed I would guess. It was about an inch or so deep and now it is definitely under a half of an inch. Packing everyday and cleaning, also dont pack too tight. I did have a small stoma though so that could be why mine is healing so fast, plus Im young. [ more ]
wooly-bobs Thanks Sharon, My wound is going to need regular attention from the community nurse team to dress and pack it. When I had my original proctocolectomy surgery the incision looked fine but it broke down within weeks leaving me with several open holes down to my muscle layer. At worst I had 3 wounds being packed, eventually they healed up after 4 months. The way my wound fell apart showed how ill I was before my operation without realising or more likely accepting it, all my bodys reserves had... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Shocking massive bleeding after months of well being
I Ikh
TE Marie IMO you don't need the psyllium if your stool is thick. Taking it shouldn't increase your frequency. It can increase or loosen stools for people with colons. It does the opposite with us, it sops up water and makes our stools thicker. Your frequency at 4-5 stool a day sounds great to me. We have 30% more bile in our BM's than when we had our colons than when we had our colons, that's why my ostomy nurse told me to get it off of my skin right away as it's more like battery acid! I would... [ more ]
Ikh It's passed more than 20 days now, and I still notice some bit (very small amounts) of red blood, moreover I feel that the more is thick and the more I retain it, the more I feel I get blood. I don't know if there is any ulcers somewhere and I'm afraid it could explode again and cause again massive bleeding. I'm much more anxious now than I was until one month ago. Also I'm experiencing anal itching (luckily not too much) as I feel the stools are too much acid. I'm taking psyllium after... [ more ]
Ikh Hi, I'm getting better but still see something red and it's no good... luckily only small traces; and you, how much time did you need for the blood to disappear? [ more ]
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J-Pouch ForumsGeneral Discussion
Illeostomy Appliance Comfort Issues and some Questions From a Newby
ATXGuyATXGuy
Pluot I think the suggestion in the link I provided is applicable then. Take a look. And again, if you haven't already, you should try a few different brands. If you're saying that you're using an additional adhesive in addition to your wafer, that shouldn't be necessary (especially if it bothers you). [ more ]
ATXGuy Thanks again. It's not the area under the wafer that gets itchy, it's the area under the adhesive. Does that make sense? [ more ]
Pluot Sorry, I'm not sure what you mean when you refer to the "collar" -- do you mean the adhesive closer to the outer edge of the wafer? Again, each brand uses a somewhat different material for the wafer, e.g. Coloplast is a harder plastic type material while Hollister is fabric. An oft overlooked approach is to simply remove all of the excess and secure the "important" part of the wafer (the "wax" like material you're talking about, plus or minus a barrier ring) with a non-irritating medical... [ more ]
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J-Pouch ForumsHelp! Need advice now!
OUCH - What is this Pain!?
J JessGoguen
TE Marie All I can think of is gas or something taking it's time to pass. I get weird pains off and on. I don't know what it is or how long you have had it so can't help much. Have you tried walking, drinking, grape juice, putting a heating pad on the area etc? Those are some of the things I do to try to get things moving along. If it doesn't get better and you think you need someone needs to see you call your doctor today in time to get to the medical office hours before they close. They have acute... [ more ]
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J-Pouch ForumsGeneral Discussion
Help - Advice - Surgery Monday
temotytemoty
rachelraven I could not have lap surgery *because* of adhesions, when I had a cyst removed some years back. [ more ]
Scott F It's important to be realistic about surgery for adhesions. It's your best bet at getting relief, and I'd do it in your shoes, but it often causes new adhesions that replace the old ones. Hopefully if they recur they will be fewer or at least much less of a nuisance! [ more ]
temoty thank you both!! I welcome all opinions here! I feel good about it. Dr. Nagle has been nice to me the whole time and her team of surgeons have been very helpful. I feel good about the situation. [ more ]
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J-Pouch ForumsGeneral Discussion
is pepto an nsaid?
pouchingtonpouchington
Chuckus Apparently your Surgeon either doesn't know or doesn't care about the impact NSAID's could have on your pouch. Not everyone has a negative side effect from taking them, but, I'd suspect over time at some point all of us would have negative side effects from taking them. Just my $0.02 (As with anything, we are all affected differently by different things!) [ more ]
Jan Dollar Your dose seems fine, but just know that there is little information out there for long term use. The one and only real concern is possible bismuth poisoning. This is very rare and only documented in those taking high doses and at higher risk (elderly or very young). Still, if you develop any neurological symptoms, you should take a second look at your Pepto Bismol. The good news is that it is reversible by just stopping the treatment. Bottom line is to take the lowest dose and frequency... [ more ]
pouchington thanks again jan. my dose would be half a caplet 4 to 6 times a day. can the antibiotic effects wear off like prescription antibiotics can? [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis but not helping? Help!
Stephaniesays91Stephaniesays91
Stephaniesays91 I'm pretty sure they never I've never heard them mention c diff! They just took biopsies as far as I know! I'm quite lucky in the fact I have no pain and I don't really have any other problems but it's really annoying that I have all the leaks and I'm not even aware of it happening! [ more ]
TE Marie Before they started you on Cipro did they test you for c.diff. This would have required a stool test too. My GI took a sample while doing my pouch scope. I'm asking this as Cipro gave me c.diff before so I can never take it again. It is difficult to test for c.diff once you are on antibiotics. I don't know if there is another test for it while on antibiotics or not. I had c.diff while having cuffitis and IPS. (The symptoms are all similar as well as they are with pouchitis.) Flagyl treats... [ more ]
Scott F It's best not to change more than one thing at a time. How can you know if it's the Imodium or the Cipro? [ more ]
See all 7 replies...
J-Pouch ForumsOstomy & Skin
skin breakdown
GinLynGinLyn
GinLyn Thanks, all. It is slowly getting better; yesterday was the first day I changed the appliance without actual pain, so that's great! Spoke with the surgeon yesterday as well and I've been bumped up on the priority list for the op; will find out date this coming week. So that's good news. Gin [ more ]
PoucherInTO I also agree with the other posters, don't worry about getting all of your Eakin residue off. I get most of it off but there is always some there when I go to apply my new wafer. Those barrier rings are designed to be very soothing and healing for the skin, so it's better to leave bits of it on rather than rub your skin to get it off. I would NOT use any oils or dissolvants, other than wipes made for the peristomal area, as they can further irritate the area and/or make it very difficult to... [ more ]
chiromancer I agree with Jill. I have found it not really required to remove all the residue which for me is primarily from a Eakins seal. I get some off during a shower and most of the rest off using a dry wash cloth after I shower. There is certainly some residue left and it doesnt seem to make much if any difference. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
having a J-Pouch to replace Ileostomy
F Francine
Pluot You should have an anal manometry test first and foremost to test the strength of the sphincters -- after nine years there is a strong possibility that adequate sphincter strength is not there anymore and a j-pouch would be a poor experience for you. I would not proceed without one... in fact, in your shoes I wouldn't even consider whether I want the pouch or not until getting a positive result on the test. [ more ]
Scott F A J-pouch isn't a foolish choice, but it also isn't "free." Most people with J-pouches are happy with them, but they can be more challenging to manage than an ostomy, and the road back from the surgery can be difficult. The advantages of a J-pouch are aesthetic (nothing poop-related to see), psychological (normal body image), and functional (no bag to deal with during various activities, or preventing some of those activities). Some folks find an ostomy to be a barrier to sexual intimacy,... [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Ok recent scope but awful pain
J jeane
TE Marie Hopefully you are taking a short course of prednisone. Did Dr. Shen evaluate you for IPS? I'm sure he did but the description of you non inflamed pouch sounds like mine and I have IPS. I was diagnosed with this by Dr. Loftus at Mayo. Dr. Shen has written several technical papers including sections about IPS. The descriptions of your pouch sure sound like mine. I'm not talking about any of the rest of it as your cuff problems have not sounded like my cuffitis. I think you have tried anucort... [ more ]
lholdem I don't have much to add other than say I've taken both entecort and prednisone - I HATE prednisone as it gives me the weirdest side effects, whereas I've experienced also none with entecort. I hope that's encouraging to you! [ more ]
jeane Interesting. I have bad a few MRI's that have been pretty unremarkable, but that's not to say I could still be experiencing some of the things you have mentioned. So far with about a week or more on sugar free, gluton free diet and no starches at all, I am feeling better. Still think I may need that entocort and just waiting on stool results before bellying up and stsrting it. I hated prednisone and really hope the side effects of this are less as has been indicated. I hope I don't have to... [ more ]
See all 9 replies...

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