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J-Pouch ForumsGeneral Discussion
Had step 2/3 two weeks ago- I have some questions!
cooper_coopercooper_cooper
averyo99 I think that all sounds pretty typical. After my second surgery it took a little while to heal but by a month out I was feeling pretty great. I had trouble peeing and sometimes still do. After my second surgery the mucus was the worst, but it all got better after a couple weeks. I hope everything is going pretty well, this forum is great to find out information! [ more ]
cooper_cooper Ah okay thank you! I know everything got all messed up in there near my rectum so I guess time will heal. [ more ]
CTB23 Mostly the mucus, don't remember issues with peeing. I do remember some discomfort with the mucus and trying to get to the bathroom. I also did have the mucus more so after the first step. It's funny, after this short period of time, it seems things really weren't that bad! [ more ]
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J-Pouch ForumsPouchitis
First time pouchitis
JS J. Smith
AllyKat Butmybutt im taking Entyvio and doing great I will never take a antibiotic again long term. I honestly think it screwed up my pouch Also Florestor for c diff prevention. I took Dificid for a month with the Florestor when I had cdiff. [ more ]
Janiep BTW..... Cipro has helped me tremendously with pouchitis! I also take VSL #3 DS ... a medical probiotic 2X a day. [ more ]
shaney ❤️
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J-Pouch ForumsGeneral Discussion
crohn's after having j-pouch surgery
B blood_stained_warrior
BNellNY Hi! I had my pouchoscopy almost 10 years ago, but my GI recently determined that I too now have Crohn's. I was also given the option to take biologics or immunosuppressants, and like you, was NOT up for that! I've been taking Budesonide (Entecort) for over a year now, and while it worked initially doesn't seem to be helping any more (I take a really low dose) and my GI wants me to start a drug regimen sooner rather than later to avoid surgery... I'm already on a lactose and gluten free diet... [ more ]
Semi Colon Jan, Thank you for your reply. You have given me fresh perspective. Best wishes to you for a Happy New Year. Jerry [ more ]
Jan Dollar Yes and no. My understanding is that the real risk factor is the disease itself that leads to the need for anti-TNF therapy, not necessarily the treatment itself. At least that what I read from the more recent literature. Lymphoma risk is higher with RA and Crohn's regardless. Who knows? Time may tell. But in the long run, I need to be functional. I don't plan on living forever and I want to live as well as possible. So, I have some concern, but no more than I have concern about being in a... [ more ]
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J-Pouch ForumsK-Pouch Korner
Mango, yoga & pilates...how not to start a new year.
skn69skn69
skn69 Thanks Janet, I tend to like my bread burnt, not my veggies...also love my meat burnt to a crisp...so I respect your right to burn your veggies! It was my dreaded 'blockage site' that felt like it twisted a bit and all of the mango fibers just caused a traffic jam just up-ahead of it and nothing was moving....for about 10 hrs...sort of scared me because the last place that you want to be on New Year's eve is ER with all of the idiot drunk drivers & the idiots who blew their fingers off... [ more ]
Winterberry Sharon, if you visit Canada again, you will find excellent creamy almond butter at Costco! It is their house brand, Kirkland. It contains only roasted almonds. I eat this on sourdough bread and it's delicious. [ more ]
JLH sharon--great description of veggie prep. thanks! i microwave them and then sauté with sesame seeds and oil--usually burning the veggies, which adds a distinct flavor not unlike a forest fire. like it that way. and of course soups are the best. i do find that i like thick soups and that clogs up the catheter. when you say blockage do you mean your intestine was blocked or the pouch got a blockage? sure hope it wasn't yoga or pilates. best, janet [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch excision
E Edubro1
chiromancer You need a qualified surgeon who has removed many J pouches, it can be a very tricky surgery depending mainly on the amount of adhesions you may have, and this something that is essentially unknown until surgery. If things go well the follow up could be done at a good hospital, with a CR surgeon in Peoria or Springfield. Even complications such as abscesses and such could be handled locally without much problem. But for the basic removal I wouldn’t do it locally, though there may be a... [ more ]
jeane I am sure there are other very qualified surgeons at Cleveland or Mayo. I just know Dr Remzi has a lot of experience with pouch excisions. I believe he is at Eugene Lang in NY now. I am sorry you are going through this. I have had a couple of consults with him myself. [ more ]
Edubro1 I am in Peoria, IL. 5.5 hrs to Peoria. 7.5 hrs to Cleveland. A couple hrs to Chicago. [ more ]
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J-Pouch ForumsGeneral Discussion
Juicer
Annie5398Annie5398
skn69 Ok, got it, If you want to 'lighten up' post holidays then add a bit of animal protein to the mix...meaning have your juices and smoothies etc but also have about 3 ounces of protein 3xs/day too...meaning a chicken breast or grilled turkey or an egg...the protein protects your from losing muscle mass at the same time as allowing you to lose the weight...and prevents you from having a 'rebound effect' or sudden weight gain once you start eating again. If you want to 'lighten up' post holidays... [ more ]
Annie5398 hi everyone thanks for all your responses, just to clear up, im not detoxing just want to clean everything out, I have eaten and drank way to much over xmas, So I have a active blend, However apples and pineapple make me really watery and can cause major bum burn.....so was just wondering what everyone else's experiences are. I just looking to lose a bit of weight but do it in a good way, as to get the goodness of spinage etc, Many thanks all [ more ]
Bobish I do things a little differently. Firstly Im not trying to detox, im trying to nourish. A body that is well fed and well hydrated will detox itself at a cellular level. I dont have a colon, so a traditional cleanse is not required. Secondly I blend rather than Juice (ie i use the pulp/skin and everything). Thirdly i use mostly veg, with a bit of 'neutral' fruit to balance. Ie i use advocado to make the smoothie thicker, apple (neutral) and banana (which actually a herb) to sweeten. I then... [ more ]
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J-Pouch ForumsHelp! Need advice now!
sever back ache
Y yvon
Mema 1 You're incredible...thanks!! [ more ]
skn69 You can make them yourself out of old sports socks (must be cotton...synthetics can melt and give off funky odors in the microwave!) and a couple of pounds of Raw rice or beans or chickpeas...Wander around the bulk store and see what there is available...the chunkier the better, it sort of massages you. I am wondering if you couldn't use those ceramic beads that they put into planters to retain the humidity...Ceramic holds heat and they are about the right size too...might be worth a try... [ more ]
Mema 1 SKN69, That sounds great....any idea of where to find one. The other question that I have is how long does it stay hot for? [ more ]
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J-Pouch ForumsGeneral Discussion
Happy New Year
JeffsmomJeffsmom
Brewbirds Wonderful news Diane! Question-how soon after did he connect back to the JPouch after the plug was inserted? Just wondering how this new plug works for fistula candidates? A very happy new year to all! [ more ]
Winterberry Happy and healthy new year, everyone. I hope this new year will be filled with peace in the world. "May every sunrise hold more promise, and every sunset hold more peace." Blessing. [ more ]
Jan Dollar Yes, Happy New Year everyone! My wish for all is for each day to be better than the day before, and if not, to find the joy each day can bring! Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Horrible gas causing frequency
J jtree
Jan Dollar I agree. Jan [ more ]
Scott F Assuming no significant side effects I'd just finish the course of both antibiotics and hopefully not need either again for a long while. Next time, if there is one, consider asking to try a single antibiotic. [ more ]
jtree I was/am too. It hasn't been ideal with the doc and PA out of the country and trying to explain to the Resident what is going on and getting good direction. That just brought up an idea... how dumb would it be for me to stop taking the Cipro and continue with the Flagyl? Then if/when it happens again, I have Cipro available. When I had UC, I felt much more confident making decisions like this, because I was more educated and had more experience. Now I'm brand new with a pouch and don't have... [ more ]
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J-Pouch ForumsGeneral Discussion
Any words of hope for pouchitis?
A averyo99
Jan Dollar No, bleeding is not required for a diagnosis of pouchitis, and is not a common symptom. It is associated more with cuffitis (inflammation of the rectal cuff) and antibiotics are not the first line treatment for that. Topical mesalamine or hydrocortisone is (in suppository form). If this is a frequent issue, you need to be scoped to get a proper diagnosis. Jan [ more ]
J moons Is blood in the stool a requirement for the diagnosis of pouchitis? I've had similar symptoms to these in and off and my pouch doctor prescribes short courses if cipro for my symptoms but I've never been officially diagnosed with pouchitis and I'm curious. [ more ]
Scott F Avery, it's much too soon to tell if you'll need antibiotics (or any other treatment) continuously. In any case, for many of us long term antibiotic treatment is no big deal. The trick is finding effective antibiotics without unacceptable side effects. I was able to delay antibiotics for a couple of years with VSL, but at a much higher dose than you're taking. Perhaps your insurance would cover the prescription-strength VSL #3 DS. Good luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pain prior to second surgery
K KC23
Jan Dollar Sorry this is late, but yes, there is always an on call surgeon. 24/7, 365 days a year for emergencies. Jan [ more ]
KC23 My surgeron is out of town til Monday.. my surgery is Tuesday. Idk if there is ever a doctor on call since the holidays.. [ more ]
Jan Dollar Gee, have you spoken to your surgeon about this pain? It does not sound typical. I definitely would be in contact with the on call guy. You say you don't want to interfere with the schedule of your upcoming surgery, but not reporting significant symptoms could do just that. Sometime what you withhold is more important than what you say. Let the surgeons decide what is going on. Severe pain is a symptom that needs reporting. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Adjusting Period - 2 Months On
J JordySimo
Winterberry Hi, Jordysimo. Yes, it seemed like I had a different problem every week, the broken skin, frequency with fissures, then things started to get better for me around the fourth month after takedown. The frequency and unpredictability eased. One thing I never practiced is holding it in for long periods of time. I read that pouchers are told to try and hold for awhile so that their new pouch can expand, but I never did that. I just feel that if the new pouch is grumbling and telling you it needs... [ more ]
JordySimo Thanks for the information, Winterberry! That's relieving to know as you get some people who have no urgency at all after takedown surgery and it just makes you overthink.... but I suppose everyone's different. I know exactly what you mean about trips to the bathroom. I'll be just getting back into bed and getting comfy, then I'd need the toilet again. I have only had one bit of incontinence, and that was the night after my operation... I have never had a leakage since being at home in my... [ more ]
Erik R I was crapping the bed a lot after the surgeries. Just watery crap, ya know in my sleep, messing up my underwear and bedsheets. I would sleep real good and then wake and boom there it was. Then I just started waking up whenever I felt like pooping. And stopped having accidents on the bed, but my sleep was worse because I kept waking up to go poops. So either I sleep like a baby but I crap like one too. Or I have nice clean underwear and bedsheets but I barely sleep. ¿Aye, que vida? [ more ]
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J-Pouch ForumsGeneral Discussion
Small amount of bleeding
MB mary beth
J moons Mary Beth, I am not sure what is going on with her issue for sure but I do know that anxiety and depression (stress) can further issues with the pouch. Antidepressants or anti-anxiolytics can get a bad reputation but I think that a mild anti-depressant to ease anxiety helped my overall help with stressing about what he future my hold. If you're daughter isn't already on one maybe it'd be a good idea to ask the doctor about celexa or something. [ more ]
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J-Pouch ForumsGeneral Discussion
new member
SM Salvatore mo
Erik R I was afraid that with my scars and frequent trips to the bathroom in the middle of the night that I would have trouble dating again. But that's not the case. Women still find me attractive, even with the scars and the latenight pooping. I mean, there's still women that find me extremely annoying, but my J pouch surgery has nothing to do it. [ more ]
cas Welcome to the group! [ more ]
CTB23 I agree that there are some grim realities on this site, but also lots of people do have pretty good success with j-pouches. Like I've heard others say, the people who are not having issues are not the ones likely to post. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Crampy & nauseous
GoofeegutzGoofeegutz
Goofeegutz Thank you Brenda and J Moons. I will definitely go in if I get worse. Been sipping Gatorade and water and nibbling on a banana for some potassium. Feeling a little better but feel real tired and keep getting the intense stomach cramps on and off. [ more ]
J moons Also, if you can't get enough fluids then you need to return to the clinic for Iv fluids. Dehydration quickly leads to nausea and it snowballs from there. If you strike a fever at all then worst case scenario you could have C diff so they would want to get a stool sample so I would surely go back if you continue to deteriorate. Hang in there. Everything gets much better in time. [ more ]
Brenda lynne davis you may just have a bug I try to stay away from people when they are sick and we use a lot of lysol around my house. And the holidays you may have eaten someting different than usual.I always have gator aid at my house,I try to drink a lot any way.And it could be your period.or all of it together.you are not the same person as you were before the surgeries. good luck and God speed. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need a J Pouch clinician in Charlotte
J moonsJ moons
Chuckus My pleasure. Dr. Schmitz would still be my GI if I lived in Charlotte still. I moved to Jacksonville, FL in 2008 and have been at Mayo Clinic here since then. I have no hesitation recommending Dr. Schmitz, he's got a good bedside manner, listens to his patients and is fairly young (near my age 47) and is pretty up to date and was quite knowledgable about J Pouches, etc... he referred me to my surgeon, Dr. Douglas Rosen, that did my initial surgery (Dr. Rosen also is top notch). If you see... [ more ]
J moons Makes me wonder whether the 8 hour drive is worth it. I just find myself wishing I could follow up more often but don't because I struggle to drive that far. [ more ]
Scott F There are very, very few J-pouch specialists. The best you can hope for in most places is a gastroenterologist who is knowledgeable about J-pouches. [ more ]
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J-Pouch ForumsGeneral Discussion
diet that does not cause butt burn or discomfort
Holly MHolly M
Winterberry Hello, Holly M. You can take your bidet to work! There are travel bidets on Amazon. It's a purple squirt bottle with angled nozzle. I don't know how discreetly you can fill the bottle in a public bathroom and go into a cubicle, or keep a small bottle of water in your purse to carefully pour into the squirt bidet when you're ready. I say this because the small air lock button on the bottom of the squirt bidet can drip a tiny bit of water if you leave it in your bag with water already in it. [ more ]
gleam If you can't handle the mint feeling of calmoseptine, try aquaphor. The tattoo industry uses it to help healing of tattoos. My poor bum tends to prefer it. [ more ]
Holly M thanks everyone, I have a doc appt in 2 weeks and I will ask about acid blocker. I use a bidet at home and it sure helps alot. Wish I had one at work! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stool coming from incision and fistula after LIFT surgery
C CLB
CLB Okay, thank you, Jan! [ more ]
Jan Dollar I have not had this surgery, but yes, this does sound like failure of the repair. If it was just sphincter weakness causing the leakage, it would just be leaking from the anus, not the repair site. I hope I am wrong about this. In the meantime, ask is it is OK to do sitz baths to keep it as clean as possible. Stay alert for signs of abscess. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch disconnected major problems.
RE5RE5
Jan Dollar There are a number of members here who could not leave the pouch intact, but disconnected, because of ongoing septic issues or just feeling ill all the time. Pouch removal solved the problem. I suppose it all depends on how long you want to give this to resolve, or at least simmer down. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leakage from New J-Pouch
S SJAN810
SJAN810 Thank you WINTERBERRY, this is very encouraging! I will keep doing what I can to help the situation and try to be patient while my body adjusts. This gives me hope that things will get better! Thank you! [ more ]
Winterberry Keep the area as clean and dry as possible. Some members clean and then use a hairdryer to completely dry the area before applying the barrier cream. Never put on barrier cream if your skin is still moist; that will seal in the moisture. Fungus can result. Dry and comfortable will help the area to heal. I didn't have any problems until my third or fourth week when my skin broke down. Try to keep your skin from breaking down. I think I used to leak because my pouch was full, or even half... [ more ]
SJAN810 Thanks you guys. It's only been about 3 weeks since my ileostomy takedown surgery so I know it's going to take time for things to get better. It's encouraging to hear that things have improved for you over time. I've been avoiding tomato sauce and citrus juice because I think it might make things worse. My skin is holding up pretty well, no redness, just some burning and itching and the feeling of moisture in that area that drives me crazy. I'm taking Imodium at night and that is helping a... [ more ]
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J-Pouch ForumsGeneral Discussion
how will a one step go if your uc is controlled?
U ummm
CTB23 I had my surgery due to severe pancolitis with dysplasia. I also had my hysterectomy due to dysplasia as well and other factors. My surgeon will be doing scopes and biopsies every year just to keep an eye on things. As I understand, rectal cancer does not happen often, however I feel better knowing my doctor is on top of it. [ more ]
Jan Dollar Your cancer risk associated with UC is largely dependent on the number of years since diagnosis (there is a gradual increase after about 10 years), and the extent of the disease. Pancolitis (involving the entire colon) has the highest risk. Left sided colitis has a risk similar to the general population. Sadly, being in remission does not do much to alter cancer risk. However, it is easier to see precancerous lesions if you do not have active disease. So, the best thing to do is to talk with... [ more ]
ummm That's also interesting. Idk what my chances are of colon cancer because my UC is controlled but the thought of not having to take meds is just...great [ more ]
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J-Pouch ForumsGeneral Discussion
Upcoming J-pouch surgery
MikeTexasMikeTexas
aka KNKLHEAD When you say you've had an ileo for two years and wonder why you didn't do it sooner, it was an interesting thing to say. You sound like a very positive and optimistic person and your wife is worrying "for" you it sounds like. To put her at ease, let her know that you will be honest with her. My bet is that she's nervous you will put up with stuff and not share with her with you're not happy, or in pain, etc. Did I get this one right? [ more ]
Erik R I broke up with my ex fiancée because she refused to support my decision on having the surgery (luckily I had amazing siblings and parents to support me). Just let your wife know that you really want to do this surgery. It is one of the most important decisions of your life. The recovery for the surgery goes a lot smoother if your closest loved ones are there for you during this process. I told my ex fiancée all this but she stayed stubborn and kept telling me to not have the surgery. So I... [ more ]
rlblife I had my first surgery in August and the 2nd just 3 weeks ago... Its amazing how much better you will feel especially after the first surgery and the diseased colon is removed! Its never fun to sign up for a 3 part surgery but its very doable, I promise. I had my first surgery in August (the subtotal colectomy was an emergency surgery- not planned, I was in adrenal failure trying to taper off steroids) and then there was actually a "kink" in my small intestine, so after 3 emergency room... [ more ]
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J-Pouch ForumsHelp! Need advice now!
2nd surgery is 2 days after Christmas , helpppp
K KC23
Erik R Don't worry about the possibile genital damage. A very small percentage of dudes have had that damage happen to them. Everything works great for me down there!!! [ more ]
rlblife KC: my surgery was laparoscopic, not sure if your's is, but I think it made the "pain" less post op since there are not any major incisions to heal. My immediate post op pain was more around the incisions that did exist (mainly the one near pubic region which was about 2 inches and painful, the one that had a drain in it on my lefthand side and then actual stoma- I actually have 2 stomas now now and they have a TON of stitches which hurt. I would say by day 3 the pain was nominal and I... [ more ]
KC23 Thank you all , where was your pain after the rectum removal and J pouch formation? Was it mainly near your butt or abdomen or where. And I was told by my surgeon that this surgery is just as serious and major as my colon removal was. I am just curious about the location of the pain and if it was just as bad as the colon removal and also inquiring about the amount of days most of you stayed in the hospital after the rectum removal as I'm taking a 3 step surgery, mine is the 27th and I was... [ more ]
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J-Pouch ForumsPouchitis
Probiotic please help
Chad44Chad44
Scott F VSL will tend to prevent or delay pouchitis - it sure seemed to for me. Florastor is intended to prevent C. diff, so it makes the most sense if your risk is higher (e.g. taking Cipro or prior C. diff). [ more ]
CTB23 Hi Chad44, Glad to hear the VA approved VSL-3 for you. Is this the double strength? I still have to register at the VA myself (retired), just haven't done it yet. [ more ]
Bobish To be honest its going to be an 'everyones different' answer. As far as I know, You cant overdose on probiotics, certainly not the natural ones as they only contain cultures which should be present anyway. Having an 'excess' would lead to excretion through bowel movement. That said there is very little evidence that probiotics help anyway, and for the price a lot of doctors are against them (I take symprove even though my doc is certain im wasting my money). VSL is the one that supposedly... [ more ]
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J-Pouch ForumsGeneral Discussion
I want to hear your recovery stories!
FAPqueenFAPqueen
Itsanewworld I was like that too. If I did learn one thing after going through what i did was to stop and smell the roses and enjoy the "me" time. Have me new perspective. Work will always be there. [ more ]
FAPqueen thank you everyone for your responses and stories! I appreciate the comfort of knowing how many people have already gone through this. I think the biggest thing is me, being used to working 13 days on, 1 day off, of between 8-12 hour shifts a day, having to get used to just... not working for a while. It'll be a big change. It'll be hard for me to not return to work full force! Thank you! I feel a bit better now! [ more ]
Albannach How long did it take you to recover? What was your recovery like? I had two surgeries. In the first (sub-total pancolectomy - keyhole), they removed most of my large intestine, leaving most of the rectum, and gave me an end ileostomy. Three and a half months later, I had the second surgery (open surgery). They removed my ileostomy, removed almost all of the rectum (leaving a small 'cuff' at the site of the join), created the j-pouch, and connected it. Recovery from the first surgery was... [ more ]
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J-Pouch ForumsGeneral Discussion
Gaining weight
D DEE2015
DEE2015 I know the ensure/boost is full of unhealthy stuff. Thank you I will look into getting that. [ more ]
Momma My 16 yr old son drink Fuel protein drinks by Organic Valley. They are natural and have 26 grams of protein and 260 calories. They are natural not like the Boost or Ensure which are loaded with artificial stuff. He eats lot of protein (bars, peanut butter, cheeses, chicken, smoothies) and carbs. He lifts weights 4x per week. He is slowly gaining weight. He was 88 lbs 5'9" prior to his first surgery last December. Now one yer later, he is 6 months post takedown is 125. He is still very thin... [ more ]
CTB23 Me too! 4 months out from takedown-would like to gain about 10 lbs. to get back to normal weight-stuck at about 102 at this point. However, only in bathroom 3-5 times in 24 hrs. so that is good! [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch anatomy
D Dunninator
Winterberry Hello, Dunninator. I used to wonder the same thing!!! So I searched the Internet and there are lots of pictures of the inside of pouches, taken during pouchoscopies. It is hollow because you can see the "owl's eye", which is how the top of the two pouch limbs look as the camera peers up into the pouch. The inside is hollow. I believe the fold is cut when the staple "gun" is inserted into the folded pouch and "fired". The two limbs are stapled shut and cut at the same time. Do a Google search... [ more ]
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J-Pouch ForumsGeneral Discussion
Clean up following a bowel movement Part 2
M MCH
Winterberry Hello, MCH. The travel bidet I bought from Amazon is the "Brondell Bidet, model GS-70, GoSpa Travel Bidet". It cost $15 Canadian on Amazon. It is purple, with a long white, angeled nozzle. It comes with a travel bag for discretion. When I had my ostomy I used it to flush out my ostomy bag while wearing it so it stayed fresher longer. Filled with very warm water it is really comforting and cleans so well. I now have an attachment bidet on the toilet but I take my travel bidet whenever I leave... [ more ]
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J-Pouch ForumsGeneral Discussion
Incontinence
E EmP
nys I continue to have accidents almost nightly, 9 years after takedown. I know sugar is the main culprit and I stay off it but occasionally. I pad myself with a sanitary pad and a couple layers of folded paper towels and deal with it when I feel it. Dr. Remzi said not much I could do, have a healthy pouch.....but I hate having this nightly ritual to deal with! [ more ]
Scott F EMP, that had to be a miserable experience. I'm sorry. When my body exhibits a worrisome symptom or event I try to remain open to the possibility that it was just a fluke. If it doesn't recur or persist I can just get on with my life. Maybe something you ate gave you an unexpected reaction or a touch of food poisoning. I hope it's gone, whatever it was! [ more ]
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J-Pouch ForumsGeneral Discussion
Gag reflex
M Momma
Scott F I could imagine some damage to the throat when the breathing tube was inserted for anesthesia. This would be very unusual, though, and (if it occurred) it might not have been noticed. Others may have other ideas. [ more ]
Momma No other meds or conditions. Takes probiotics, fish oil, multi. and has been for many years. It started after step one surgery [ more ]
Scott F Did this start right after takedown, or on a different schedule? Is he on any medications? Does he have any other medical conditions? [ more ]
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J-Pouch ForumsGeneral Discussion
Vegan diet
winter wishwinter wish
winter wish Steateorra or fatty pale stools, it's really not pleasant! Vegan diet because it's low in fat really helps, eating out is difficult. Get bloods checked for fat soluble vitamins and ferritin. If I ate a particularly high fat eg pizza etc it would be really greasy output. [ more ]
Winterberry Hello, Winter Wish. I'm sorry that I don't have an answer for you, but I hope I can ask you a question. What was it that sent you to the doctor and diagnosed with fat malabsorption? I have occasional problems that I think might be related to what I eat, especially if it was a fat-dense meal. I think my diet is good with simple foods, but sometimes I indulge. [ more ]
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J-Pouch ForumsGeneral Discussion
Elavil/Amitriptyline
KQ Kevin Q
Kevin Q Oh wow, I never heard of that before! So were you primarily taking for problems sleeping? And what dose were you taking, if you don't mind me asking? I'm hoping if I stay at a relatively low dose I can minimize the side effects. [ more ]
Alison b All drugs react different as Im sure you know so take this knowing Im different then you.. but I was on Amitriptyline for 7 years. and yes it finally helped me sleep. However a few years in I realized I was sleep walking. I would wake up and the front door would be wide open (I needed to open 3 different locks on the inside to open it ) - really freaked me out so I went off it (took a year to wean off) [ more ]
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J-Pouch ForumsHelp! Need advice now!
FATIGUE after 2nd of 3 j pouch surgeries--Lomotil?
rlbliferlblife
rlblife This is so helpful! Thank you! I have not taken any Limotol today and I am still wiped. I am hydrated enough, so I need to assume I am just healing I guess? I am so anxious to get back to the gym (a fav pastime before surgery) and start shedding this extra 10-15 lbs I have gained, but I really respect your opinions everyone- keep 'em coming! you all know so much more than any doctor I can ask, so thanks again. I do get more energy in the afternoons, anyone else experience that? Super... [ more ]
Jan Dollar Personally, I think it is the surgery itself that is causing the fatigue. The j-pouch surgery is much more complex and traumatic than the colectomy. Three weeks is very early in your recovery. It could be the lomotil, but I would not think so. But, like Scott suggested, you can try reducing the dose and see if it helps. Personally, I was fatigued for months post op. I did not take lomotil, but did take Imodium. Jan [ more ]
Scott F None of us will know if it's the Lomotil, but you could try skipping a few doses (starting with first dose in the morning). Lomotil doesn't last very long, so you might get your answer in a day. If you're not peeing light- colored urine a few times daily then dehydration may be the more likely cause. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
After over 20 years is my pouch still attached by nothing but sutures?
FM Former Member
Scott F The gut is pretty much like always-wet skin, with some local customization in each area. The inside of your mouth is a bit like it, customized for what a mouth does. The small intestine has characteristic folds for each portion, examples of which are most easily seen if you get adventurous with dim sum in a serious Chinese restaurant. One difference between healing in the mouth and healing of the J-pouch anastamosis is the the anastamosis is made from a full-thickness cut through the tubular... [ more ]
Former Member Thanks, I had a feeling it would heal itself but unlike my skin, I just have no idea what anything looks like on the other side. [ more ]
Jan Dollar Barring any complications, the sutured bowel "knits" together in less than a week. Sutures and staples just maintain good approximation while the tissues join and heal. Full healing takes place in 4-6 weeks. Of course, complications like infections, will delay healing. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
"One Step" J-Pouch, risks, recovery advice etc
J j_stone
Crazy1 Not to bump on oldy. However, Would like to ask how anyone is doing or has done since this thread. I am in the same boat as this guy. Have had ileo for years. [ more ]
ucKindaBeauty Can anyone recommend a surgeon in Florida who does the one-step please? [ more ]
Jan Dollar Positive attitude goes a loooooong way, along with a sense of humor. So, try not to get discouraged if everything isn't perfect. Regardless of the type of surgery or how great the surgeon is, sometimes stuff happens. But, by the time school starts up in the fall, you should be doing OK. Yeah, you will be having more BMs than your pals, but you probably won't be in the can any more often than the next guy. Can't help you with how to deal with nasty public toilets or lack of privacy, but you... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Severe pain after scope
WinterberryWinterberry
Winterberry I think I figured out what my intense pain is. It is a condition called proctalgia fugax . it is not dangerous, just excruciatingly painful. I hope this information might help someone else who experiences this or searches for it. It is a scary pain until you learn what it is and put a name to it. This symptom was also discussed briefly on this site in 2013, which I found after a search, and researching the Internet. The stabbing, strangling pain lasts 10-20 seconds to a few minutes, then... [ more ]
Brenda lynne davis poor thing your still healing Good Luck [ more ]
Winterberry Thank you both. The pain has lessened a bit. It doesn't happen for a couple of hours, where in the beginning it was several times per hour. I felt it more when my pouch wanted to be emptied. I thought it might be gas related too because after the pain a bit of gas popped out, but it felt too intense and too localized to be due to gas. I remember my gas pains in hospital waiting for bowels to work and it felt like a brick being dragged through every inch of what was left of my intestines! I... [ more ]
See all 5 replies...
J-Pouch ForumsK-Pouch Korner
shrinking stoma/skin bumps growing
Rosie128Rosie128
Bodoni I have a tiny, strictured stoma. Is there a simple surgical procedure to enlarge the opening a bit? john@winedesign.com [ more ]
BillV Janet, the binkie was devised and is available from Wayne Jacks who can be contacted at mwjacks@aol.com . He makes them himself and they come in two sizes. They are not available commercially. Hope you have a great and uneventful trip to China. Bill [ more ]
Rosie128 Thanks Janet! I will keep you posted. Safe travels to China & enjoy the trip! [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Burning internally
AQ Ally Q
Ally Q Hi Scott, My stool consistency changes one day soft the next runs, never to hard. am also full of wind and that burns I have difficulty pass wind can only manage when I set on the loo but as I say it really burns . I have never tried cholestyramine (Questran) I will get some from my GP and give it a go. Thanks for the advice. Ally Q [ more ]
Scott F It sounds like your doctor is treating cuffitis (with Asacol) and anal fissures (with diltiazem). Is your stool consistency soft (but not liquid)? The idea is to make it easy to pass without straining - that's what the methylcellulose is for. Have you ever tried cholestyramine (Questran)? Some people find it very helpful. [ more ]
Ally Q Hi Scott, I have tried external creams, OstoGuard, Cavilon, Metanium, LaVera, etc,etc. Lately I have been taken, Asacol suppositories along with Diltiazem Hydrochloride 2%w/w and up to 8 Loperamide and up to 8 Celevac (methylcellulose) daily and 1off codeine morning and night but have not bee taken these lastly as I don't want to get reliant on these. Ally [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Pouch leakage?
S Starry01
Diesel Just had the increased urgency/frequency with the passing of the mucus, and couldn't control.... Would walk/run whatever and things just "happened" and I couldn't control it. I'm doing fairly well, just has been a battle so far with pouchitis for me, but control it with Cipro, Pepto Bismol capsules and diet when it's bad. I am getting ready to try VSL#3 DS, and see how that goes. Other than that doing ok, just keep barrier cream handy, and if you don't have a bidet yet I would look into... [ more ]
Starry01 Jason - did you have any other symptoms of pouchitis at that time? I have no other problems except occasional "pressure type feeling in the j pouch area but I can handle that. My last scope was April and they said it all looked great inside. Hope you are doing very well now after takedown. [ more ]
Diesel Starry, sorry to hear about your issue. I had same issue prior to my takedown with the mucus leakage and not being able to control it, so they scoped me when it got worse and closer to takedown, and I actually had pouchitis in my jpouch without it being connected so not sure if this is helps your situation or not, but this was my experience. Jason [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
C diff in the j pouch
R RJP
averyo99 I had C diff before my colon was removed. Every time I came off the antibiotics it would come back angry. It was horrible! I had a fecal transplant and it cleared the c diff up and I haven't had any since. It really is a fascinating process to put in "good bacteria" in the form of feces. It could be found as gross, but I wouldn't let it bother you. For me I had a colonoscopy and then they administered the stuff. It could be a little tricky to find a doctor who will do it, but it is... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
C-diff infections & hospitals
C CeeeeCeeee
Scott F Ron, C diff can be a very difficult infection to completely eliminate. A new (and remarkably successful) approach to treating recurrent infections is FMT (fecal microbiota transplant). Perhaps you can discuss it with your doctor. i don't think the testosterone has anything to do with this. [ more ]
RJP I have a questionbig have had a jpouch for 9 years. I have had c diff 4 times already. I am currently on Vanco. I have not took any antibiotics and continue to get it. I just started on testosterone therapy injections 3 months ago. I don't think it's from that. Does anyone please please have any thoughts ??? Ron [ more ]
CeeeeCeeee Thanks so much for clarifying my question/concern. It's scary! [ more ]
See all 5 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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