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J-Pouch ForumsGeneral Discussion
Calling all ostomates...A new and crazy project
skn69skn69
skn69 Still trying to map this all out and get some financing for it all...(don't need much but some basic room and board and fees for the photograph...I do it for the fun of it!) Will keep you all posted on the progress.... Sharon [ more ]
KangaRoe I am in the NYC area and could take the train in to the city. Are you going to be in NYC to do part of this? Rose [ more ]
vanessavy Speaking of Becca. I believe today is her birthday so a lot of happy birthdays are going around FB. Sad she lost this fight to FAP. There is a documentary about her titled " I am a Visitor in Your World." proceeds go to help fight colon cancer. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hernia Pain @ Stoma sight
G grandmaof1
Jan Dollar Yes, sounds like it was an obstruction. The stoma site is the most common place for adhesions to cause obstructions. Keep an eye on this and if it is a frequent occurrence, you probably will need the adhesions released. At that point, you may as well get the hernia fixed too. Jan [ more ]
grandmaof1 I am still sore. But I think I might have had a little blockage. Now I have severe diarrhea. So I am hoping tomorrow is a new and better day. Thanks again Jan [ more ]
grandmaof1 Thank you Jan. I didn't know that. I am going to rest for awhile and see how I feel. [ more ]
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J-Pouch ForumsPouchitis
uggggh!!
G GWAR
jeane Gwar, I have an ongoing issue with this due to some constant minor inflammation in my cuff. I use benadryl cream and cortisone cream for the itch (the doctor can even prescribe a cortisone cream). I also use vaseline often as that is soothing although it is best used as night as it can be sticky. Also stay away from the wipes and water is best. Use a squirt bottle if you can find at the supermarket( an old fashioned plastic condiment bottle works fine). Fill it with warm water and rinse as... [ more ]
GWAR thank you much!! i will try the fungal cream. and yes itching does feel nice at first and not do much for taking the itch away. i can just scratch down there all day. lol. thanks for the advice!!! [ more ]
Jan Dollar Sounds like a fungal infection. You may want to try over the counter fungal cream, like miconazole or chlortrimazole. Rubbing and scratching may feel good at first, but it also perpetuates the itch. Don't use dry toilet paper, but paper moistened with water. Commercial wipes can be bad too as they can contain alcohol and fragrances that are irritating. Plain water is best. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Learning to empty new j pouch
PH playin hooky
CeeeeCeeee First thing in the a.m. gravity really plays a role in my life. After being horizontal during the night, my J-pouch seems to empty easily but when I think I'm finished I just need to stand up and/or walk around for a few minutes until the second pouchful is ready to leave my body. Now that I expect this to happen it is no big deal. At first I was kind of put off that I couldn't take care of business in one step! [ more ]
Jan Dollar The pouch basically empties by gravity, so it is best to sit a few minutes to give gravity time to bring more down. Better yet, if you are not feeling quite empty, try standing up and sitting down again, or leaning side to side. If you think your internal sphincter is not relaxing, you can try coughing (rather than straining), as that can relax the internal sphincter. You may have noticed that sometimes you leak when you cough forcibly, and that is why. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Skin
skn69skn69
TE Marie I hate it that it is so hard to get into the specialists that you need. I hope you will get in soon. [ more ]
skn69 TE, I keep putting off the dr because it is a 3hr wait if I am lucky and my energy level is so low that it just is not possible...will try next week when work is over...I still have a couple more days work before I can just chill out a bit and relax... The skin is calming down a bit today and hopefully the cycle has stopped for now...I need bloodwork, x-rays (something is brewing in there) and an ultrasound...plus to get to the specialist for the lymphoma...I am way too tired for the little... [ more ]
TE Marie I'm sorry you all have these problems and Sharon I'm worried about how you can go anywhere or do anything right now. I first thought antihistamines, but you've got that covered. After my surgeries I had bad scars from when I was a kid that were 45 years ago turn bright red again. They looked like they just had healed where they were barely visible for years. None of my doctors had a clue what caused this to happen. They gradually faded again. This conversation makes me think of them. That's... [ more ]
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J-Pouch ForumsGeneral Discussion
Future considerations
C ChrisBastian
Jan Dollar I am confused. A penicillin allergy does not mean that use of Cipro is contraindicated. Cipro is not related to penicillin, and is in a. Completely different class. I know there are a few sites out there saying there is a relationship, but no medical sites. http://www.nlm.nih.gov/medline...fo/meds/a688016.html Perhaps you were thinking of cephalophorin (Keflex), which is sort of related to penicillin, and there is a known risk of possible cross-allergy there. Jan [ more ]
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J-Pouch ForumsK-Pouch Korner
antibiotics
JA John A
John A Yes, the Shen diet is something I too am trying. But the lack of veggies made me iron deficient. Nevertheless, it does definitely help. The antibiotics make the biggest difference though. Changes from the KP running my life, to me running it. Much less frequent emptying and no urgency. Took amoxicilin for a couple of weeks until it stopped working and then cipro for 6 weeks, but now that's also ineffective. Will start augmentin as soon as Shen calls it in. Trying to find a cycle that I could... [ more ]
vanessavy Xifacin does nothing for me. Shen at CC put me on Tindamax. Diet is key though and can take a full year to get the guts in check on it. High fat, low fiber diet. I cook paleo usually so I already follow that. I the times lately with cupcakes around. :/ [ more ]
John A Thank you, Liz...Xifaxan doesn't work at all for me. WHat is this FODMAP diet? I will look online. Dr. Shen is working with me on this too. Again, much thanks. [ more ]
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J-Pouch ForumsGeneral Discussion
Off Antibiotics; now - nightly incontinence ...
n/an/a
Scott F I'm glad things have improved, n/a. When you get the best result you can achieve, it may be worth comparing it to how you did on antibiotics. Then you get to make a well-informed decision about antibiotics, based on the actual benefit they provide (if any). Even that's not a perfect analysis, of course, since all of the things you're doing now might have improved the results while taking antibiotics. Sleeping through the night without interruption, for example. [ more ]
n/a Thanks Chris. As an update, it's been over a month now and things have improved. No more nightly accidents. I get up 1-2/night to empty the jpouch - not bad. I don't know specifically why things have improved, but I've reduced sugars/carbs, take 1-2 peptos/day, take 1 immodium at night, and eat homemade yogurt 2/day. [ more ]
ChrisBastian Hi I'm new to this site, but what works for me is a nightly dose of Metamucil, 2 panadine forte 4 lomitol and 2 gastro-stop's I still get up through the night but once a night is better than 3-4 or the dreaded accident good luck [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Ladies Only-"welt" in delicate area
n/an/a
n/a Both the lumps are now gone. Whew! [ more ]
n/a Thank you, Sharon. Sharing your experience with this is so helpful. I still worry about having another darn fistula, but will be patient and use the compresses, etc., for another few days. [ more ]
skn69 Basically, if you touch it, squeeze it or bug it then it will get inflamed or worse...if you do what you are doing, depending on the stage and 'ripeness' of it then it will either dry itself out (meaning disapear) or open up and seep/ouze...either way, as long as it shrinks or disapears then it is all good...if not...you need to call the doc... It does take up to a week to see a change some times...So be patient. Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anyone have experience with Peritoneal Inclusion Cyst
S sweetpeasmom
sweetpeasmom Thanks for your response. She did just go for a 2nd opinion at another local hospital. The GI referred us to a new surgeon. He mentioned trying the drain again or doing open surgery to remove the cyst.(It is huge; 10cmx14cm, on both sides of her pouch) He left the decision up to my daughter and she decided to try another drain Since then, the reading I've done shows a 30-50% recurrence after surgery and a 50% recurrence with the drain. Dr. Shen, at the time, referred her to a CC... [ more ]
liz11 I've had them. Had one drained via CT guided drainage. Another one has just been left alone. My CC surgeon didn't want to touch the last one because he though he could cause more problems. I would be wary of your local surgeon if Dr.Shen, aka the jpouch guru of the world, told you to get the cyst taken care of first. He may be concerned by the location of the cyst and proximity to the jpouch? He is the one that deals with all kinds of problem patients AFTER their takedown. He knows what kind... [ more ]
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J-Pouch ForumsGeneral Discussion
Feels like im sitting on a tennis ball sometimes.....
dgtracydgtracy
dgtracy This hurts really bad when I have to use the bathroom. Sometimes it feels like its so inflammed its blocking things right there at the exit. I end up straining so hard because of this. [ more ]
dgtracy today in particular i find that im using kegel area to really stop it. already took a bath this morning but plan on another one soon, maybe ill look into the medicine cabinet for some muscle relaxers and see if those help. [ more ]
jeane dgtracy, I experience this at times (what haven't I since having a jpouch) and I often find hot baths as Jan suggested really help. I tend to take baths 3 times a week at a minimum just for the soothing effect they have and they minimize the feeling you are describing. [ more ]
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J-Pouch ForumsGeneral Discussion
Can Anyone Relate?
P phonix2g
phonix2g Thanks guys its just nice to know there are people out there that are experiencing the same things. It gives me a piece of mind I feel a lot better and will keep fighting the good fight. Thanks again. [ more ]
kta Yes. I just had a long run of near perfect function, finally acknowledged it in my head and the next day - WHAM. Issues. Oh well. Anything is better than a flare of the old UC. [ more ]
cassiecass Evening I can relate.I will be 2 years post take down in September.I have learned to trully watch what I consume. I also think our fluid intake plays a big part with us. Being a Thyroid patient has not helped me in this journey.My Thyroid lab values also play a Big role with me. I take each day as a new adventure.I have to admit I come a long way in almost 2 years. Just know you are not alone Cassiecass [ more ]
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J-Pouch ForumsGeneral Discussion
Very very hard stool.
dpawsdpaws
dpaws Thanks for all the help guys, just back today from family Doctor. Blood work came back tested positive for Lupus. Oh well. [ more ]
rachelraven It wouldn't hurt to send for C Diff, it's just a lab test. I never understand when doctors just don't even want to send a lab test like that... I mean, if it's negative, then great, but if it's positive, then there's your issue. Milk of Magnesia works well for constipation without the cramping associated with laxatives. I've only had brief and extremely rare instances where I needed to use something, and MoM was the only thing that worked without making me miserable. [ more ]
dpaws I mentioned C. difficile, but again he just shock his head " no we would have seen it". Maybe I should get a second opinion. Maybe I'll look in to Hamilton Doc's at McMaster. [ more ]
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J-Pouch ForumsK-Pouch Korner
Hernia w/ a K pouch?
SA Sydney AZ
Patricia Walker Hello again Thank you for replying. Yes I think I did not make the message really clear. The only time the stoma came through completely was after the birth. I understood this was due to the muscles being weak in this area. It is just that dealing with this made me realize that if all went horribly wrong with the valve I could ease it back. But remember the GP did show me this. Now I had been told in the last few years that the hernia could be repaired. The problem came was when they could... [ more ]
skn69 Patricia, I am trying to figure this out...if I understand correctly: 1. you have a peri-stomal hernia (a hernia close to the neck of the valve or stoma) 2. your valve pops out completely (which normally should lead to total incontinence) 3. when it pops out you can just push it back into place 4. your tube hooks onto your valve and 'pulls' your stoma out Is that about right? If I got it strait then there is a very easy fix to this...a peri-stomal hernia can be repaired through a... [ more ]
Patricia Walker Do not know what view people have on this.I believe the end of the catheter can cause a problem. If the valve has been partially pulled through by catching on the holes in the tip of the catheter. This means on next incubating it means the valve has slipped through just slightly but enough to cause a black for the catheter. After the birth of my son with this area week it was a real problem. Freaky as the whole stoma came to the surface. A GP came out to me and taught me how to simply push... [ more ]
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J-Pouch ForumsGeneral Discussion
grazing and pouch function
I iHateColitis
iHateColitis Jan - Thanks for such a thorough, scientific explanation. This makes perfect sense. I've had my pouch for 9 years now, and have always eaten 3 large meals. In terms of functionality, things have been pretty good. However, I have major problems maintaining my weight and am also always extremely hungry (and tired) despite eating a lot and eating a balanced, nutritional diet. I'm going to try out the grazing to see if this helps me. [ more ]
Jan Dollar There actually is science behind the recommendations for frequent, small meals, oppsed to eating three large meals. This is particularly true early in the adaptation period or if you continue to have issues with a rapid gut transit time. First of all, the bigger the meal, the more time it takes to digest. Early in the adaptation period for mostly everyone, and indefinitely for some, the gut transit time is too fast to digest food well enough. If you find you are not able to gain or maintain... [ more ]
Holly M I still have my 3 meals a day and snacks in between but my meals are significantly smaller than they used to be for sure. Which isn't a bad thing. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Don't have hysterectomy!
M Mo
Mo Oh, and my CR surgeon is located at Jefferson university. I've always liked him and I wish I had my hysterectomy there instead of the other hospital. [ more ]
Mo Hi ladies I keep forgetting my password! Anyway, here is an update. My ileostomy reversal surgery was cancelled because I'm still in pain. CT scan showed a 5.2 cm abdominal cyst. Do t know where since j have no ovaries. It did not show on ultrasound. The tech said she just thought it was too deep behind too much stuff. CR surgeon to review everything and call me tomorrow with plan. He mentioned aspirating cyst. Do you think this can be done at same tone as reversal? Also they did endoscopy... [ more ]
itsnotsherry My colorectal surgeon assisted in my hysterectomy. That is one of the pluses of going to a hospital like the Cleveland Clinic, where all of the doctors work together. [ more ]
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J-Pouch ForumsPouchitis
Align or Ayurveda?
H hails1
desisn00ps I have tried ayurveda and I think the key is to find a really good practitioner who will follow up and keep track of all the herbs you're taking and the reactions you're having to them. Also, note that it has a detox effect that a lot of people have trouble tolerating (since we already use the bathroom so much). I do find that ayurveda helps but it takes a long time to work so be patient with it. [ more ]
Scott F If your doctor is unfamiliar with antibiotic-dependent pouchitis I suggest finding a better doctor. Many of us are on antibiotics for pouchitis for years. It's not ideal, but it's much better than pouchitis IMO. Your doctor's reasoning is uninformed. [ more ]
Jan Dollar Haven't tried it or heard of it as a probiotic. I thought it was just a type of Indian alternative medicine. But, other probiotics other folks have tried here with varying success are Culturelle (lactobacillus GG), Florastor (saccharomyces boulardii), Flora-Q (4 different probiotic strains), and PB-8 (lactobacillus acidophilus and bifidobacterium). Currently I am taking Nexabiotics (formerly called Benebiotics- I have no idea why they changed names. It has 20 strains of probiotics, including... [ more ]
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J-Pouch ForumsPouchitis
Monthly colds and sickness
T Tigowoods
clz81 So...personally, I haven't seen the link...actually the exact opposite. I have had chronic pouchitis pretty much since takedown. My kids come home with colds and virus every few weeks, but I don't seem to catch any of them. My husband does get almost all of them though. I have had 2 colds that I can remember since my son was born 2 years ago. They were both really bad ones that it took awhile to shake, but it was the same for my son. [ more ]
Holly M I have had a cold now for about 3 weeks, can't seem to shake the slight cough and stuffy nose. First sickness since I had j-pouch surgery last Feb. I am back on a round of flagyl now but wasn't on it when I got the cold. [ more ]
Jan Dollar The only thing I can think of is that your resistance has been low due to the pouchitis. Once you catch a cold, you are immune to that virus, but there are innumerable cold viruses. The main suggestion I would have is to pay attention to frequent hand washing and don't touch your face when you are out and about. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
First step (of 3) in 8 days, any tips?
S Salmak
Pluot I'm having three steps, and although I'm not finished yet, having been through steps one and two I am SO glad that I am doing three steps. Step 2 was a very tough surgery that was hard to bounce back from and, frankly, demoralizing. If I had had to face it when I was at my sickest I can't imagine how much harder it would have been. Whereas, after step 1, although it was difficult, I recovered relatively quickly. I was severely malnourished, underweight, etc and after Step 1 I was able to eat... [ more ]
phonix2g My advice is keep a clear head and positive attitude and have an understanding that this is a big surgery and its going to take time and patience to get through it. I'm not really sure how old you are or what your health status is right now but those also factor in to recovery time. I expected for my recovery to go a lot quicker which I'm only about 9-10 weeks post take down so I'm still recovering but I didn't know any better until I joined this site and read other pouchers posts and... [ more ]
Holly M The best piece of advice I can give is to take your recovery one day at a time. Also, Have a good stoma nurse and make sure you get the right appliance for your needs. Stay hydrated ,rest when needed and keep asking questions here. This site helped me before, during and after my 2 surgeries. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Anybody for a game of Jpouch Roulette?
P phonix2g
phonix2g It is great that we all can have a discussion that would make most people really uncomfortable and laugh about it. Thats why I'm glad I stumbled upon this site because prior I would try and talk to my wife about stuff like this and all I would get was a weird disgusted face ha ha. Keep laughing pouchers. [ more ]
rachelraven For me, no farting can happen standing up. It just is physically impossible! I can do so sitting and lying down, and on the toilet, though, and never have issues with that. No messed clothes for me, thankfully. The oddest thing now is that when I'm lying, and I pass gas, with my seton drain, I can feel some of it "escape" out around the drain. Like a double fart! lol Only you guys would find the humor in that. [ more ]
mgmt10 If I am laying down then passing gas isn't a problem. Success 100% of the time. Standing is a different story. I won't even attempt it! I agree with Jan.....no need to sweat the small stuff. In my opinion it's a small price to pay to be healthy again. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Suggestion before surgery!
VG Victor G.
skn69 I have had my underside shaved so often for surgery that after a while I would be shocked to find hair growing there...yes, a wax job goes a long, long way to easing the tape-rip-shave-ouch situation...And no nicks and cuts... I did try some of those cream hair removers with disasterous results...they were not meant for delicate/sensitive tissue like we have and I ended up with a major rashe down there (really uncomfortable post op!)....Beware! Sharon [ more ]
rachelraven I never had any rectal drains... but yes, I woke up completely bald after surgery, and no one told me that that was going to be the case! I was sort of mortified, but then again, I was 19 when it happened. Surgical shave preps don't happen as much these days, but I guess they must still be doing it with this one. After my takedown, no one did anything "down there," because they're not mucking around the J pouch, they're just reattaching your loop ileostomy back together, so with the last... [ more ]
CeeeeCeeee I, too, wish someone had told me to get a professional waxing job "down there" prior to my first step surgery. Whoever did the "scalping" as a part of the prep in the O.R. was intent on doing the job at any cost....to me! Ouch, for days! Years later when I had a hysterectomy, I explained my previous experience. They listened and I was left with a much more comfortable result! [ more ]
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J-Pouch ForumsHelp! Need advice now!
So confused!!
G Ginabello
rachelraven I'd say keep an eye on it... If you start to feel ill, or fevered, or the lump hurts very very badly, I'd go sooner, but if it's business as usual, I suppose you could wait OR call your doctor Monday morning to see what they suggest, if nothing changes over the weekend. My lump never got bigger than, say, nickel size, and then it burst and started its lovely fistula cycle, so mine was never very large, even though it was painful. My drainage picked up a wee bit, after ending the antibiotics... [ more ]
Ginabello Thanks Rachel .. This lump is the biggest it's ever been a little sore not much in discharge.. I feel ok no other symptoms but am getting a little worried in the size of it!! Wednesday is surgery and I wanted to have a stress free weekend with my family..it's also very hard not soft.Do I just wait until Wednesday or go to the ER? [ more ]
rachelraven Well, my abscess burst on its own, though the ED did do a cut on it, too, and wick packed it. THAT hurt way more than the seton placement. I didn't really have an intra-op procedure for it, just local anesthesia and a small slice in the ED. It took a bit of time to heal, because our poo isn't well formed, so it burned to go, and I just had to soak more in the beginning. I hated the abscess way more than the fistula! Once it ended up established as a simple fistula, and I had the seton... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stricture
TC Tara C
Dam uc ❤️
jeane Good approach. I too most likely need to get checked every several months as I can alwAys tell when it starts narrowing as I have many if the same symptoms being described here. I also think I have a hernia at my stoma sight from stranding due to the stricture. Not fun. [ more ]
rachelraven I've had three outlet dilations under anesthesia within the past few months. The first one, I was walking like John Wayne for about 4 days... not really "pain," more just a *violated* feeling. The next two were progressively easier, likely because I wasn't as narrow. I'm not going to the bathroom WAAAAAY better, so it was a necessary evil, and I'm going to have him check me every so many months to make sure things stay open. When it was narrow, I, too, felt ill, couldn't pass anything... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I seem to be in a vicious circle
G Goody2shoes
TE Marie Please try a bagel and marshmallows. Metamucil in caplet form where it is in clear gel caps is easier to take than stirring in water, for me. Plus it is better for us to drink less water than is suggested. I was taking these 3-4 times a day, 3-5 each time and they really worked. I did not get out of the hospital after my first surgery for 16 days as I kept getting dehydrated or everything was running into my bag faster than the nurses and I could empty it. One of the ostomy nurses hooked up... [ more ]
Jan Dollar I think the key is slowing the gut. If Imodium (loperamide) or lomotil does not do it, then you need opiates to slow it down. Failing that, there is Sandostatin injections. Usually, restricting fluids for a high output ileostomy is the opposite of what you are supposed to do, as you are supposed to drink more than your output. However, if you have something like "dumping syndrome" fluid restriction can be necessary. Usually though, it is just hypotonic fluids that are restricted (like... [ more ]
Goody2shoes Thanks for replies - immodium didn't work (I got up to taking 40 capsules a day ) Lomotil - you can't get hold of in the UK - I have been taking codeine - which works to a point - when I remember to take it I had pasta and bolognese for my meal - which came through within an hour [ more ]
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J-Pouch ForumsGeneral Discussion
3rd C.Diff Medication ?
TE MarieTE Marie
TE Marie I'm having gas like never before, I've even figured out how to get more out. Each of the 15+ times I go I bend over, to take advantage of gravity, after to at least a 30 second count, and when I sit back up more gas comes out. It's not painful. I think it's the bacteria making it. (That's me adding some OCD counting to the process, ha ha.) I'm sure there is some kind of bacteria infection and hope the flagyl kills it. I've stopped the probiotics while I'm on it this time too. They haven't... [ more ]
vanessavy I am on an antibiotic for bacteria. What Shen thinks I suffer from. Just never been this bad before. Maybe I will get better. just feels hopeless lately. That c.diff really messed me up. [ more ]
Jan Dollar My recollection was that the inflammation and damage that the toxin can cause can also cause chronic symptoms long after the infection is gone/suppressed. Like a chronic IBS sort of thing. For me, gurgly gas always seems to be too much bacteria, but not sure if it means infection (antibiotics always work though). I'm sure that doesn't really help... Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Is this normal post takedown.
R RossAlexander
Holly M thanks for the cornstarch warning, so far I haven't had any issues but I do use a bidet and dry off really well. But may look into the other powder. Thanks!! [ more ]
mgmt10 All this sounds totally normal. Your body has to "learn" going to the bathroom again with your new plumbing plus you are healing on the inside. Calmospetine works great on butt burn. I can't live without that stuff. The only thing I will add from my experience is that if the weeks go by and you are still finding it difficult to empty, consult with your surgeon and get checked for a stricture. Sometimes you can have narrowing/scar tissue where the j pouch is attached to the anus and it needs... [ more ]
kathy smith Holly - I may be misremembering, but I think that I recall that using cornstarch might provide food for yeast and one can end up with a yeast infection. (I did a quick internet search and some say it can promote yeast infections and others say they swear by it. There you go. No answer.) edit - well there you go - Jan spoke up while I was typing. She's a faster typer! kathy [ more ]
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J-Pouch ForumsOstomy & Skin
Tips on shaving the hair around your stoma
EricEric
oonja ❤️
Pluot So clever! I read in a new ostomates handbook once that another way to do it is to use a trimmed toilet paper or paper towel roll, the cardboard tube. I guess the added benefit there is that it's a strong barrier to prevent you from accidentally nicking the stoma. [ more ]
Steven Muster Just to add my comments on this subject as it's really quite important (I know the post is a month old now!). I was getting leaks & real pain tugging at the bag every few days until I started shaving around the stoma. I don't put anything over it, but have the timing down to a cue. Two hours after breakfast I get no output for another hour or so. It's a case of knowing when is the best time for you. Since shaving I've not had one leak. I change twice a week, once on Monday & again on... [ more ]
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J-Pouch ForumsOstomy & Skin
Leakage from bottom of bag
I itsnotsherry
chiromancer If you have the two piece that is adhesive rather than a mechanical connection that might be the problem. I had several leaks with the adhesive seals, always at the bottom, which is logical. The adhesive two piece sensura is problematic. I use the one piece now and have no problems. I never had problems with the velcro closure on either the one or two piece. [ more ]
liz11 yes and do that folding back part when you empty. That keeps it all nice and clean. hopefully this all works for you. [ more ]
itsnotsherry Liz, I know I am sealing and folding ok. I don't usually do the tucking flap thing. Maybe that will help. I didn't even think of that!!!!! Thank you! That's why we have this site! [ more ]
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J-Pouch ForumsGeneral Discussion
hashimoto's disease
GR Gretchen R
rachelraven Make sure to have them check Thyroid Antibodies for sure. My hubby has Psoriatic Arthritis, and he's borderline for thyroid disease. Thyroid antibodies shows that the autoimmune disorder is attacking the thyroid. He has normal TSH levels but through the roof thyroid antibodies... They've not decided to treat him yet, with the normal TSH, but they're now aware his thyroid might malfunction b/c of his autoimmune disorder (though some docs will treat where he is). He has some signs of... [ more ]
TE Marie Hair loss is a symptom as well as the fatigue. Vannesa is correct. The standard test only tracts one, I think T3 but it could be T4. In any event you need more testing than that one. My step-sister had Hashimoto's and lost 100 pounds, without trying, after receiving the correct diagnosis. She had the weight to loose and could not diet it off prior to the diagnosis and treatment. [ more ]
vanessavy My friend who has this and Chron's wanted me to post a response (she doesn't belong to this forum). 'It's common for people with one autoimmune disease to have another. Hashimoto's can be hard to dx through blood work at times. You want to make sure your doctor tests for free T3, free T4 and TSH along with antibodies for both Hashi's and Graves; it is possible to have both and yes you can gain weight with graves at times. Thyroid Sexy on Facebook has a ton of notes and information available... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cipro/Flagyl
C Chris_JPouch
Bodoni Jan is right. Maybe you should have been put on a 21 day course of meds and just one med. I had mild pouchitis a couple of years ago, and I took Flagyl 3 times per day for 10 days. But - as I said - I had a mild case. So far, it has not reoccured. Wishing you the best. [ more ]
Jan Dollar 10 days may not have been enough. If this is bacterial overgrowth or even if it is pouchitis, sometimes you just need a longer course. What was the reason to use two antibiotics right away? Usually they just use one first time out. Jan [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Bad Day
P phonix2g
Jan Dollar Overdosing on sugar certainly can be a source of a major belly ache, as concentrated sugar is like a laxative, and can be dehydrating. So, go easy on the candy, please, or be willing to suffer the consequences. But, I am less concerned about your butt issues and more concerned about your "rib pain." Since you don't say you are short of breath, I'm going to assume you are not. But, if you are short of breath, you need to call your doctor right away and get checked out fr possible pulmonary... [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
sooooo tired of pooping at night!
L lab
mom2panda I take codeine at night, and I don't have any issues with waking up to go to the washroom when I need to. I don't find the codeine makes me overly drowsy, but it does slow down the bowel at night. [ more ]
dgtracy For those who take Codeine at night you dont worry that will make you sleep through a BM? [ more ]
dgtracy I go about 7 times a night as well. Its frustrating, very. I'm out of work on FMLA right now, only a month out of takedown and i go back next week sometime, i like naps but even those are broken up sometimes. hope it cuts down soon. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
was doing good till a rectal exam..4 weeks post takedown.
dgtracydgtracy
Jan Dollar If I were you, I would hold off on the Canasa and call your doctor back and report your reaction to it. I suspect it was not the drug contained in the suppository, but the anal irritation caused by suppository insertion. Something appears to have been traumatized by the exam and it will take a while to get better. I was looking something up for another post here and it got me thinking. I wonder if your doctor moved your coccyx (tailbone) during the exam, and that set it off. If you have a... [ more ]
dgtracy thanks, i tried a canasa last night, was able to retain for only an hour but after that its like i pissed off my pouch, i was in the bathroom so much it was crazy, sometimes there was so very little. scared to try canasa again, i really want to sleep..cant remember the last time i had more than 3 hours. [ more ]
Jan Dollar Either she was not completely forthcoming regarding her findings, or she is just stabbing in the dark in regard as to what to do. If it is not a fissure or cuffitis, it probably is muscle spasm. It could have been there was something going on before she got in there (those early weeks it is hard to tell what is normal or not), and all the manipulation was like smacking the hornet's nest with a bat. There can be a lot of swelling/bleeding into those surrounding tissues during surgery, and it... [ more ]
See all 13 replies...
J-Pouch ForumsGeneral Discussion
To tell, or not to tell?
EricEric
Former Member ❤️
dgtracy I was single for a month, no j-pouch, no bag, but was struggling with UC alot. I dont know what but i needed to let this girl know why im rushing to the bathroom at times. to date we have now been together for 3 years 5 months, she was there with me when i had my bag and now my J-pouch (only have had it for a month) she is my rock,. [ more ]
Former Member I've dated a lot in the past year. In my opinion the best way to do it is to not bring it up on the first date. My thought was that if I was not going to be interested in them in the first place then it's a waste of time and mental stress to bring it up. We also have to be honest with ourselves and realize that just because it's a part of our lives and we are completely used to it, it's not the same for someone who has never had exposure to ibd or these kinds of issues. It can be... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Frustrated again
SpookySpooky
tammykathleen Spooky, I'm sorry to hear you are still struggling with your anemia. I have the same issue. It has been happening since the onset of my UC, through the j-pouch and I now have been Dx with CD. I was told by my doctor that anyone who has a shortened gut is never going to retain the amount of nutrients, iron, folate, etc that a person with a colon will through food. I have also been told that unless you dose yourself with alot of Vitamin C at the same time as you take iron, have it infused or... [ more ]
kathy smith I'm so sorry you're continuing to go through this. Hopefully you'll find out what's going on in the next several weeks. kathy [ more ]
Spooky Thanks for the replies. At this point, I don't feel that a hemotologist can really be of much help, as that would just be a "bandaid" solution. The problem is that I am bleeding somewhere in the GI tract, and the source has not yet been identified. I can pop iron pills all I want, but until we find out why I'm bleeding we won't get to the root of the problem. At this point, my hemogloblin is not excessively low (it was 139 in December, 113 in March, 120 in April, but now we are down to 109),... [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Pretty close to the end of my rope!
G Grandonion
clouseau I know how frustrating that is as my situation is similar. I have tried some things mentioned here, metamucil type product, cipro, food diary, all have helped a bit. And peptobismol can help as well. I think the world of Dr Shen at Cleveland Clinic, the pouch specialist, you might want to see him. Best of luck. What we have found is that everyone's system is a bit different so experiment. [ more ]
spouch Hi Trevor. It may help if you keep a food diary of everything that you eat and that means everything. I still find that even after 30 years of having a pouch there are certain foods that if I eat them in a few hours my butt will being trying to turn itself into a Volcano so I avoid them or I will be punished something severely for my lapse. Try one food at at a time and see how you go. Regards from Australia. John. [ more ]
phonix2g I noticed the difference when I started taking a tbsp of citrucel 3 times a day but not with the suggested eight ounces of water. What works for me is to have a water bottle filled up then just spoon the tbsp in your mouth and just wash it down with as much water as needed then don't drink fluids for a little while. Citrucel is not that bad doing this with because its the best tasting one out there in my opinion. I'm not sure how close you have a health food store but I go to one to get my... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
New Pouch Adjustment Question
PH playin hooky
Jan Dollar 17 years later and I will only pass gas on the toilet. Not because I cannot do it standing up, laying down or whatever, but because I do not want to be buying new underwear all the time .... Jan [ more ]
rachelraven Oh, and after surgery, I have never farted when standing up, ever again. I can only pass gas lying down, sitting down, or on the toilet. [ more ]
rachelraven I Kegel'd like a champeen in the beginning. Sphincters of Steel. [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Lower J-pouch pain
F Free3
Jan Dollar One more thought came to mind, coccydynia, also known as tailbone pain. Usually it is due to falls or childbirth trauma (boy-oh-boy, my tailbone has been tender ever since I gave vaginal birth to my 10 pound son, but it really flared up when I had a presacral abscess). Anyway, it can come and go or be chronic. Here is a link you can look at to see if it sounds like you: http://my.clevelandclinic.org/...a_tailbone_pain.aspx Jan [ more ]
Jan Dollar No other symptoms, like increased frequency, looser stools, that sort of thing? Only two things come to mind: 1. Something GYN related (ovarian cyst, uterine fibroid, preggers, that sort of thing). 2. Pelvic floor muscle pain/dysfunction related to: -#1 above -a pelvic abscess/fluid collection (less likely since you are so far post op, but I have seen it reported) Give it a few more days and see where this goes. Hopefully, it is just a blip on the radar and will resolve by itself. If not,... [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Ampicillin & Pouchitis
A Alysia
Alysia Thanks and sorry Cipro doesn't work for you anymore. I fear the same for me. [ more ]
clz81 Alysia, Keeping them in rotation and waiting longer periods in between should allow them to be effective much longer, however, in my experience, after almost 3 years of rotating with Cipro, it doesn't seem to do much at all for me anymore. The first couple of days seem good, but then it's kind of done. I didn't take it for almost 4 months and then tried it again, and it was kind of worthless. Hope it keeps working for you! [ more ]
Alysia I have another question, Since I have been taking the Cipro for many years do you think if I take the augmentin for a little while and then switch back to the Cipro that the Cipro will work again? [ more ]
See all 5 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Pouch after C-Section, will it go back to normal??
R Rhonda84
mom2panda My c-sections were before my jpouch surgery but it did take a while for my bowels to wake up. Have you tried adding some Metamucil? 1 tsp 2x per day and see how you do. And as others have said, reduce your pain meds as much as possible. Regular tylenol is okay, but try to get off any narcotics you're on. Good luck. Hope it gets better soon. Congrats on the baby. [ more ]
rockandroller It's normal, and so is the gas pain. Cut down on any pain meds as much as you can tolerate. That horrible burning pain where your incision is when you try to push WILL go away, but it takes awhile. If you can get into a position (sorry, weird) where you are on the floor with your ass up in the air, like a downward dog type pose, that can release the gas a little sometimes. What really works is the plow position (you can google that) but that would be really painful on a fresh incision. Hang... [ more ]
rachelraven Bowels hate to be touched during surgery, and often get quite sluggish for a time thereafter. It's called an ileus. I had an ileus after my colectomy/J pouch formation/loop ileostomy, and it was one of the most painful of things ever. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Pre-Flexible Sygmoidoscopy Anxiety
E EdwardK
Scott F It doesn't sound like the anxiety has much to do with the actual pouchoscopy (it's not really a sigmoidoscopy, since you have no sigmoid colon, but that's the instrument and the closest available billing code). Driving to the procedure is likely to be riskier than the procedure itself or the risk of rectal cuff cancer. In any case, you might want to start thinking of the anxiety as a problem all its own, worthy of attention and treatment. Just a thought. [ more ]
rachelraven I would imagine the risk will always remain, but with most of the large bowel/rectum removed, the odds are still in your favor that something else will likely be the cause of your demise rather than anal cancer. Here's what a 2008 article stated: "The risk of dysplasia following IPAA is small; so far there have been about 20 reports of cancer developing in the pouch or residual anorectal mucosa, and in virtually all of these patients dysplasia or cancer was present at the time of IPAA (4). [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
10 Days Post Loop-Ileostomy Cramps/Contractions
J JsWife
vanessavy I had severe gas and cramping in the hospital I still get it. I had c.diff though. Easy to pick up in hospitals. If your white blood cell is up make sure they test for that. [ more ]
TE Marie Sounds like he's on the road back and also like it was painful. I hope all he needs it to rest everything and let the antibiotics work. They will probably look into everything more tomorrow. I wonder what caused this to happen? I bet you are tired. Driving while worrying about him for 10 hours, I'd be on my last nerve. I hope you can get some rest now. Thanks for posting and please give us updates when you can. [ more ]
JsWife Well.... We weren't overly confident at our local hospital, they seemed pretty unfamiliar with the whole deal. We decided to have him discharged and drove to U of M in Ann Arbor (2 different nurses quietly said they'd do the same). The drs here have been in touch with his surgeon. To make a long story short, it looks like he has swelling in part of the lower section between the stoma and rectum, causing a backup. They're giving him antibiotics, fluids and drained his stomach with the ng tube... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
After 10 Years Pouch Suddenly Working far Better
NYC GooglerNYC Googler
Rebe0505 well i am 7 years after jpouch operation and i would have to say i think it is very possible it just can get better for no reason i can think of..i had issues right away diagnosed with antibiotic dependent pouchitis after 2 really bad years of trying lots of things..i rotated full dosages antibiotics thereafter for about another 4 years which seemed to keep me under control than as recently as about 6 months ago i tried amoxicillian since my rotations were getting shorter in between... [ more ]
Old Mike,Glenns Dad Well I was wrong he now eats two meals a day,about 1 and at 5 or 6,he does graz in between those hours,then has nothing except water,lemon juice and a dds-100 probiotic. He also eats only paleo type fruits,and grass fed meat,or organic range chicken tht kind of stuff. Eats sprouted bread like Ezekiel,but the other brand he can get it at half the price. Claims pouch function much better,he will also tell you that things improved or the much better after he had his mercury fillings removed. [ more ]
Old Mike,Glenns Dad No I mean he eats one meal,as far as I know he is not grazing. But I will recheck tomorrow since we will be haveing dinner with him. Old Mike [ more ]
See all 17 replies...
J-Pouch ForumsK-Pouch Korner
Dr. Remzi
vanessavyvanessavy
vanessavy Why are you worried about this post? [ more ]
Dot2 I am worried about this info. Daughter had J-pouch at Hopkins 19 yrs ago - recently been diagnosed with j-pouch cancer at DC hospital - they also recommended 2nd opinion because they were not sure what to call it with no colon. She has apptmnt with CC which is 8 hours away - Since she is in so much pain she will no doubt go to where she originally had the surgery. If she had not had pain a few weeks ago, and in hospital a week for infection, she would have never known she had cancer. She was... [ more ]
PJ75 Josh I wasn't sure if you are aware of this but Dr. Remzi does not work with K Pouches at all anymore. Dr. Deitz is now the Vice Chairman of Colorectal Surgery and Dr. Remzi is the Dept. Chairman. Dr. Deitz is the top surgeon at CC for K Pouches now. They both are excellent surgeons as you said. They just specialize in different procedures. The CC's main website needs to update what doctors perform or revise K Pouches/Continent Ileostomies. Dr. Remzi and Dr. Church do not but are listed on... [ more ]
See all 16 replies...
J-Pouch ForumsPouchitis
mom of a jpoucher with pouchitis
G gottswood
Mom of a Jpoucher I just wanted to put my 2 cents in real quick but I hope that your son is doing much better My daughter takes VSL extra strength in the capsules. They do make it but her dr had to write a letter to my insurance company explaining the importance of her taking it. She absolutely refused to take the powder stuff. Also I have heard of a mom making homemade VSL enemas for her 15yr old son and having great success. Not sure if you have ever heard of this group or not, but on FB there is a group... [ more ]
Scott F Pouchitis definitely causes unwelcome nocturnal events for me. I hate them, so I'll use euphemisms! [ more ]
jeane What does mucoussl issues indicate? Does that mean ulcers? I hope he's feeling better. Please keep us posted. [ more ]
See all 13 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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