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J-Pouch ForumsGeneral Discussion
Post Takedown-When you felt comfortable to be out
ItsanewworldItsanewworld
Sharon W I am 16 days post takedown. I rode in the truck 5.5 hrs yesterday stopping twice to use restroom. I didnt eat until 30 minutes out in case it caused me to have the urgency. That and the searing pain(butt burn) have still been my issues. I have problems if i walk too much. I have explosions from time to time, so Im still wearing pads. I hope to feel confident soon but i think at this rate it will be 6-8 weeks before that happens. I have been taking immodium anout 6 a day. I think it thickens. [ more ]
Former Member I had my takedown surgery on the Thursday and left hospital by the following Tuesday; I had a 4 hour train journey home. During my journey home, I only required one toilet visit on the train, since the last, which was at the hospital. My biggest difficulty was the discomfort and lack of mobility due to the healing of my old Stoma site. Getting up and sitting down was really awkward but once up, my mobility was ok, no issues walking or shopping. My surgeon suggested I take Immoduim but also... [ more ]
Scott F For many (most?) people the first 5-6 weeks after abdominal surgery are simply about recovery: regaining strength, adjusting to your new plumbing, etc. Some bounce back more quickly. That being said, sometimes a problem worth treating (with more than patience) crops up. Have you called your surgeon? It's possible you have a spasmodic pouch, usually treated with Bentyl or Levsin. Mostly, though, it's just still hard at two weeks post-op. [ more ]
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J-Pouch ForumsGeneral Discussion
What about healing our minds?
InbetweenerInbetweener
skn69 I tend to agree with Jan here...being sick from a very young age, I personally believe, changes your outlook on life. I was born sick and had my first 6 surgeries between age 2 -3....had another dozen by age 14. You kind of stop fretting about stupid stuff after that. Your value system is more grounded, more 'real'. When in Sick Kids Hospital, I spent a lot of time trying to help other kids who were worse off than me...those that couldn't walk, autistic kids (yes, in the 60's and 70's they... [ more ]
Jan Dollar This is a great topic. How we cope is an extemely important aspect of our lives. I don't know if it is because I was diagnosed with UC at age 15, or if it is just part of my innate personality, but I always seemed to be able to just accept how things were and not dwell on what "could have been if only..." I actually was grateful for the challenge, because it forced me to learn early on how to prioritize and not sweat the small stuff. I was still pretty much of a perfectionist on what I chose... [ more ]
Lambiepie First, Yoga and meditation is what centered me pre- UC, during my jpouch days and since my perm ileo surgery a year and a half ago. Second, when I find myself getting down at all, I try to remember to wait to a "shift" - nothing stays the same, it always eventually changes, so I know to look for and wait for that....I'm way more grateful for what I DO have in my life than I used to be and I have a lot less patience for people who complain about petty things (I'm working on letting go of... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
I'm currently 6 months pregnant confused about which delivery route I should take...
G gen1
Inbetweener I've had 2 c-sections and have never regretted it. I can only go by my friends experiences of natural birth and what I've learnt from them, and I'm glad I didn't give birth naturally given all the things that can and do happen to complicate matters...and we've got enough complications already. Good luck with everything. If you do have a c-section, ask the doctors about what you can still have control of whilst in the theatre, I.e are there choices you can make beforehand to make you feel... [ more ]
Living I'm having a c section ..... The chances of pouch failure is a risk after vaginal delivery. How has your pregnancy been for you? Did u conceive naturally ? And since you had one before I am curious as to the differences between pregnant without and now with a pouch. I feel like it has to be different but I will never know. I am due with my first in a month. I've had bad pouchitis during the pregnancy and also personal issues with abcesses since the day I found out I was pregnant. [ more ]
Shellie I had my surgery 25 years ago and had a c-section 21 years ago and was glad I did. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis! Need advice!
Linda2Linda2
Linda2 I agree! Maybe her assistant didn't know what it meant either so she relayed it word for word...... I would be lol if my tummy didn't feel so bad. Thanks again Jan for your help and to everyone else who responded [ more ]
Jan Dollar Why on earth would they talk to you in medicalese unless you are medical professional? Seems nuts to me and a recipe for miscommunication! Yes, BID is twice a day. Jan [ more ]
Linda2 I also have PSC so don't know if I what I can take that won't be a problem for my liver but thanks everyone for your suggestions. I will ask the Doctor at ER if I end up going there. [ more ]
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J-Pouch ForumsGeneral Discussion
blood test
Paul HPaul H
StarryNight RachelRaven, My blood tests also came back with extremely high B12 level. I would be interested in an explanation as to how this may indicate lack of absortion, if you get a chance to ask your GI Specialist. Also, what is the name and dose of your B12 supplement? Thank you! Laura [ more ]
rachelraven As for high B12, by IBD GI specialist said in J pouches, weirdly high numbers can show lack of B12 absorption. I'd have to ask for the explanation again, but that's what he said. He put me on supplementation when he saw my high number. [ more ]
Paul H Thank you, yes it's time to cut back, might give me more energy too! I only abstained for 12 hours so all in all I must be in good shape. How lucky I am. Paul [ more ]
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J-Pouch ForumsGeneral Discussion
Low iron questions
clz81clz81
rachelraven I tolerated oral ferrous glycinate but not oral ferrous sulfate in the past. Be sure not to take "enteric coated" meds/supplements; we don't have enough time for them to always completely dissolve. As for labs, a panel should include not only iron, but ferritin, iron binding capacity, and transferrin, too. They complete the picture on iron stores. Check out dark black strap molasses for iron content. One brand I took had 25% daily recommended iron per tbsp! It *is* sugar, though,... [ more ]
boy's mom I recently learned from a hematologist that you can take a test to see if you are even able to absorb iron orally. My son was able to absorb it but not as fully as some people. You absorb iron in your duodenum so J pouchers should be able to absorb orally. However if you have inflammation that can get in the way of absorption. We were told liquid iron taken twice a week is best way to absorb and you have to be careful about too much iron as that will end up being stored in you liver and you... [ more ]
Inbetweener Wow I'm so surprised that anyone with guts like ours can tolerate iron supplements of any kind?! I'm in the UK, and am about to get an iron infusion for the first time. After many months of low iron levels (and years of it really) and never getting anywhere with tablet or liquid supplements / tonics etc, the docs finally agreed to let me have an infusion and I will probably push to keep having them long term. But it's taken a lot of fighting to get it, with a dozen doctors all trying to give... [ more ]
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J-Pouch ForumsGeneral Discussion
Jpouch causes Crohns?? What??
PouchomarxPouchomarx
Kara Fred The diagnosis played a role for me in treatment and surgery. In my humble opinion, diagnosis can be important. But everyone has a different experience & thought. That is why we are all here- to share! Thanks to all of you- [ more ]
CTBarrister For the benefit of everyone here is a quote from the pathologist's report with regard to my pouchoscopy on 6/20/16 and biopsies which I got a few days ago via email on the Yale Health Network: "We note the long standing clinical history of ulcerative colitis status post subtotal colectomy with ileal pull through and ileal pouch. The patient suffers from antibiotic dependent pouchitis. The distinction between chronic pouchitis and Crohn's disease is challenging and rests on the totality of... [ more ]
Scott F CT, the diagnosis doesn't play a significant role in your situation, partly because it can't be known with any reliability. The same is true for me. It does play a significant role in other situations. [ more ]
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J-Pouch ForumsGeneral Discussion
Throwing in the towel
RE5RE5
Angie Wilson So sorry you are going thru this. Many times I've thought that - will this ever get better? The longer you live...the more ups and downs....I really hope it does get better and that your body and you adapt to the new situation. I know there are no "right words" to say to make it any easier. Will be thinking of you and hoping you get improvement very soon. [ more ]
Scott F Unfortunately loop ileostomies can be troublesome. I hope it calms down for you. [ more ]
RE5 Loop ileo. I'm sort of freaking out at this point. One of the big reasons I decided to let the pouch go was because I was destroying my bed everynight for a year plus. Now I'm waking up in a mess again .... This is one of those times where I seriously wonder if things ever get better. [ more ]
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J-Pouch ForumsGeneral Discussion
campylobacter
TrailerParkHeroTrailerParkHero
claire I hope he is fully better now. It seems like a particularly dangerous and nasty bug!! [ more ]
boy's mom My son had campylobacter last summer and lost 6 pounds in less than a week. It was awful. Cipro made him better. [ more ]
claire Hello, I'm so glad the Flagyl has helped you! It has taken 14 days of pain and literally losing so much fluids through watery diarrhea.. I've gone to ER three times for a check up and fluids but just been mainly drinking rehydration salts at home. Yes it was dx via stool sample. God it's been a miserable dose!! They were about to give me Erythromycin but my GI doc said wait as its a self limiting infection, and he really tries to avoid antibiotics with me.. Then today it seems to have really... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pressure when urinating
P Pufferfish
YogiLori After my takedown I had issues with my bladder for quite awhile. It is now fine. I think it takes awhile for our bodies to normalize into something new. [ more ]
Pufferfish Thank you so much for your quick responses and reassurance. There is now a bit of pain when I go, therefore to err on the side of caution I will call my GP tomorrow. I forget that swelling goes on inside too; so much is happening right now that it's easy to forget. I know it's early days and not an easy walk in the park but I just hope things improve soon. Fingers crossed [ more ]
Scott F Urination was strange for me for weeks after my surgery. Stuff is swollen. Don't ignore a UTI (if you know what they feel like), but otherwise patience is likely to do the trick here. [ more ]
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J-Pouch ForumsGeneral Discussion
leakage issues solved with fiber supplements , does it help?
PouchomarxPouchomarx
Romina ❤️
TinCan I use a product called konsyl regularly (occasionally metamucil wafers and oatmeal). Konsyl is 100% psyllium fiber - no sugars or flavorings, which is my preference. However, I can't say that fiber has helped with leakage, at least when I am experiencing inflammation. It does thicken things up, allows more complete evacuation, reduces butt burn and in general makes me feel more comfortable. But only if I have my inflammation under control. Otherwise I run much the same risk of leakage... [ more ]
Sharon W I started last night and found last night to be worse instead of better. I did the powder in water as well. Man I cant wait to really ream my surgeon on Friday for the lack of information given about transitioning to jpouch and what the end goal is and how to reach it. Literally my discharge instructions were: do not lift more than 10 pounds for 3 weeks. Eat a healthy diet. How did that prepare me for these days of going through 6 pair of underwear a day (again) and the burn from the not so... [ more ]
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J-Pouch ForumsHelp! Need advice now!
In trouble.. Gastroenteritis / Pouchitis or CD...
C claire
Scott F I'm glad your doctor found the culprit. Feel better soon! [ more ]
claire So it turns out I have Campylobacteriosis poisoning from campylobacter bacteria. I got this in a restaurant on holidays- one souvenir I did not want to bring home! This is not fun at all ....!!! Severe diarrhea going on 13 days now and cramps which apparently are part of it. Also some pouch inflammation although the infection is known to cause intestinal inflammation in and of itself. I think these things may hit us harder than most , especially when immunosuppressed! Thanks Jeane and Scott... [ more ]
jeane JJust an FYI. Xifaxim further aggravates my urgency and pouchitis symptoms. Not sure if that's what your dealing with but I do get crippling, take your breath away cramps w pouchitis. [ more ]
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J-Pouch ForumsGeneral Discussion
How does Gas-x work?
I iHateColitis
DJ H For those that have had success with Gas-X or similar, how much do you take? I've tried it off and on over the years, but usually end up stopping since I don't notice much improvement. Though I may not have taken enough dosage....hard to tell. More trial and error I guess if I try it again. Gas is a bit of a problem for me for sure. I totally get what the OP means about making huge amount of noise in public places - very embarrassing! [ more ]
Scott F Gas-x breaks up gas bubbles into smaller bubbles. These have less tendency to stretch the intestine, which is what causes gas pain. Once it's in your pouch the volume is the same, though. It's fine to take both Gas-X and Beano, if they both help you. [ more ]
hattie Scott, what do mean by Gas-X changing how gas is redistributed? Would it be safe to take both beano and gas-x since they seem to approach the problem from different aspects? [ more ]
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J-Pouch ForumsGeneral Discussion
Metamucil wafers are awesome
JP Jeff P.
Rebe0505 ok let us know if it helps..start off with 2 teaspoons a day morning evening then up it to tablespoons..2 or three a day.. [ more ]
jewel66 Okeeeee I will try... nothing ventured nothing gain! [ more ]
Scott F Konsyl (at least the original formula) is just plain psyllium husk, just like the stuff in health food stores. I have no idea which is less expensive. I always take Lomotil before bed (it works a bit better for me than Imodium, but they are very similar). I generally sleep through the night, but it's much more reliable with Lomotil on board. [ more ]
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J-Pouch ForumsGeneral Discussion
Now Hospice Patient...
Randers.USARanders.USA
Inbetweener I've been thinking about Josh every day since I read his post and I can't tell you how heavy my heart feels when I think about his situation. I'm hoping he hasn't responded because he's not able to right now but will soon. All we can do is hope. [ more ]
mgmt10 I just read this thread. I cannot believe this day in age nothing can be done. I hope Josh got some help and he's recovering and that's why he's not posting. So upsetting. [ more ]
skn69 No, none. I emailed him directly but received no response. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Post takedown expectations? What are they
ItsanewworldItsanewworld
Pufferfish I'm going through exactly the same as you right now (though 14 days post takedown). This forum has been invaluable to me. I intend to ask my GP for ilex paste today. Good luck [ more ]
kta The best advice I ever got was to just be patient. You are in early days. This takes a while. It has been a long time for me, but I remember being able to eat sourdough bread and that was about it. That lasted for a long time. [ more ]
Scott F NewWorld, are you using any sort of barrier cream? Most people find it very helpful in the early days, at least. it takes a while to adjust to the new plumbing. Try to be patient. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Very awkward question re: sex
D Dunninator
skn69 Ditto... I have a k pouch...but the same holds for me...no all-you-can-eat buffets in the beginning before sex...no spontaneous-out-in-the-forest or on the mountainside sex (never did it before the pouch either so no great loss!)... I prepared in the beginning...I ate light, used the washroom, freshened up and then said a prayer to the G-d of colonless people who are his special children and hoped for the best. Took a while to relax. Used a towel under me for ages. Practically stamped... [ more ]
yogijano Hi Sue , In the 11+ years of having my pouch I may have had 1 or 2 tiny accidents while doing "it" but surprisingly nothing more than that. Obviously if your not feeling well then hold off and I make sure I go to the bathroom right before so I don't worry about it . [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal pressure/throbbing
G grandmaof1
NewPouchMike It is also my current biggest issue right now...that pressure in the lower Pouch area sort of like throbbing sort of like spasm it causes me to have to tighten up or risk leakage/bowel accident.. and when I tighten up then my stomach gurgles sometimes audibly for people to hear 4 and 5 feet away... and then it continues and happens again 5 minutes later etc... If you are fortunate enough to be at home when this happens I find what works is a warm bath laying on your back with your feet up it... [ more ]
Jan Dollar I doubt it is something you ate unless it is irritating something that is going on, like a fissure or abscess, cuffitis, etc.. Jan [ more ]
SonnyJ215 I've been having anal throbbing and pressure with urgency as well for last couple days are not sure what it is it's very discomforting could be specifically one thing or Numerous problems going on cause me to go to the bathroom more often and could be something that I numerous problems going on causing me to go to the bathroom more often and going to be something that i have ate ? [ more ]
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J-Pouch ForumsGeneral Discussion
Loperamide
P Pufferfish
Pufferfish I'll get my husband to pick them up from our health food shop tomorrow then! Thank you so much for your advice [ more ]
Paul H Hi Pufferfish, Took me 2 or 3 months to settle, I was like you with Ileo. The best thing that helped was a bulking agent, I use 3.5g x 3 a day of Pysllium or Plantago Ovata. Diet was brat, bananas, rice, apples, toast. Good luck Paul. [ more ]
Jan Dollar Gee, that was 20 years ago and my memory is dim. I guess a couple of months. Be sure to use barrier cream to avoid butt burn. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
day 5 post takedown, feeling bloated
D Dunninator
Scott F If you stay patient and keep your diet and food quantity moderate this is likely to stop bothering you over time. [ more ]
Pufferfish Hiya. For what it's worth, I'm now 13 days post takedown and have this too. Peppermint Tea has helped somewhat but I do believe that time is the primary factor. Make sure your diet is low residue and avoid all gas-producing foods. best of luck! Looks as if we are starting this journey together! [ more ]
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J-Pouch ForumsGeneral Discussion
Septation?
CatinthehatCatinthehat
Jan Dollar It probably is related to that incident. Jan [ more ]
Catinthehat Thank-you Jan, that helps. I had an infected abscess after my first surgery. I was wearing a portable unit getting antibiotics for 8 weeks. I wonder if this is a remnant of that. It showed up on an MRI that I had several years ago. I am trying to get more info from my doc. Richard [ more ]
Jan Dollar Cleveland clinic does do remote second opinions. Essentially, they review your medical records and make recommendations based on that. Insurance probably will not cover it and would cost $500-800. In the long run, you'd need to see him in person. This is better described as a pouch sinus to a presacral collection/abscess. I had a presacral abscess and it wound up sending me to the hospital for 12 days with a fever of 105. It was a dicey fix with a drain inserted through my butt cheek for a... [ more ]
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J-Pouch ForumsPouchitis
liquid feeding
MewowMewow
skn69 Not for the same reasons but yes. I lived off of a semi-full fluid diet for months...my pouch was twisted an I could not transit solids safely. It took about 48hrs for my body to stop asking me for solids and then it became 2nd nature. That said, I have put myself on to liquid diets to clear myself out for extended periods of time without any difficulty..you just need to maintain hydration, protein and vitamins...a liquid supplement or gummy vit might be needed to keep strength and energy... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Not getting answers
Patti AnnPatti Ann
BillV Hi Patti Ann, I concur with the recommendation to get an opinion from Cleveland Clinic since they have an excellent reputation for dealing with problematic j pouches. Hopefully, they will be able to provide treatment that will allow you to have a satisfactory j pouch. You may be aware that there are two alternatives to an end ileostomy in the event you are unable to keep your j pouch: the k pouch and the similar BCIR. There is lots of information about both of these procedures that avoid the... [ more ]
Inbetweener By 'them' I mean the doctors and surgeons, who don't always know what the best thing to do is, sometimes our own instinct tell us when enough is enough... [ more ]
Inbetweener Bless you. Please don't give up asking questions. Don't sit back and just hope. Keep fighting. Keep asking those questions and get 2nd and 3rd opinions if you have to from everyone you can. Don't try to hold on to having the pouch, for the sake of not wanting to have a bag. I can tell you from personal experience that you can live, and I mean really LIVE, with a bag, if it comes to it. Please read all the posts about having the pouch out/perm ileo. They are really helpful. Just don't let... [ more ]
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J-Pouch ForumsGeneral Discussion
Recommendations for surgeon at U Penn
T TotesMagotes
yogijano Hi- Totes When I had my surgery I was 17 so I was at CHOP for everything. My surgeon there was Dr Peter Mattei- by far one of the best physicians I have ever had the pleasure of working with. He is affiliated with Penn but he mainly does pediatric cases I believe for CHOP. He has the best bedside manner ever- would love to still go to him if i could. He's also always done an excellent job on all my surgeries. Now that Im 29 I recently used a new colorectal surgeon affiliated with main line... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J Pouch failure - J Pouch removal vs non removal with permanent end ileostomy
D DS60
Inbetweener I had my ileo for 12 years and now have a j pouch that I'm wondering why oh WHY I ever agreed to. It's not connected up because of lots of problems. And reading all your posts, I'm thinking that I shouldn't take the risk of EvEr letting it be connected up. I'm going to ask my surgeon next time I see him, to give me my Sac Magique back. Never thought I'd see the day I'd ask for the bag back, before the pouch ever had a chance, but if it can't behave itself before it's even connected up,... [ more ]
Mysticobra OK. Insight. I had mine removed almost eight months ago. End ileo here. No loop. Of course I had my doubts going in but the week before the surgery I had to wear a diaper to bed because I knew it was gonna happen. My surgery took about 4 hours. I was in the hospital 11 days. She didn't trust me. 7 would have been enough. Like I said above I had my doubts before surgery. I didn't think it would make things better. I couldn't have been more wrong. I could tell the difference right away. I... [ more ]
RDSmith Hi Bob all the best mate, I am due in hospital tomorrow 7am Sydney time for my permanent ileo. Pun pardoned... but you missed the one about buggering your sex life!!! go the Wallabies! [ more ]
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J-Pouch ForumsGeneral Discussion
cold cereals
MIKEEYMIKEEY
Former Member I've been thinking about what's the friendliest cereal you can eat for your j pouch? By friendly I'm talking about something that has a long life in your stomach. I know something such as bran flakes is very bad news when it comes to my pouch. I'm not surprised given how rough the surface of bran flakes is. I'm thinking soft, soggy, surfaces would work the best. I've been eating cereal with my pouch for over 20 years and still don't know though which is the friendliest? Right now all I can... [ more ]
Spooky I love cold cereals, particularly Rice Krispies and Corn Flakes, with sliced strawberries and almond milk. I don't have issues with either. Obviously I avoid the sugary cereals. I also avoid any cereal with bran - I learned the hard way that I certainly don't need quite that much of an extra kick to my frequency! Although obviously not a cold cereal, plain oatmeal is one of my go to foods. It bulks me up while also making the stool a consistency that is easy to pass. [ more ]
mgmt10 I forgot in my post above that I eat Rice Chex too. They have a bunch of yummy favors. I don't follow a gluten free diet but they happen to be gluten free and they agree with my system so it's a happy thing. [ more ]
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J-Pouch ForumsGeneral Discussion
Abdo pain
GweedeeGweedee
Mom4td That is interesting...thanks for your response and let us know how your dr visit next month goes. [ more ]
Gweedee Well still unclear... had the scope... they took like 12 biopsies and they found one weird looking black hole... they said its could be a fistula or.could be crohns.. had an mri a few weeks ago and going to see the doc in July... they did figure out the pain i was experiencing.. when they pass through the inlet that connects to the jpouch at the top.. i felt that pain.. and they said that when my pouch gets full sometimes jt can push back up through the inlet.... that causes the pain.. same... [ more ]
Mom4td Gweedee, did they figure out your issue? My son has a Jpouch and has been running low grade fever, extremely tired, and Dr discovered an enlarged spleen. He is not having pouchitis symptoms like blood, cramps, etc. blood work came back normal and now they want to do a CT scan. [ more ]
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J-Pouch ForumsGeneral Discussion
Why is it all so difficult???
JeffsmomJeffsmom
LORI726 Hi, I am/was dealing with 2 fistulas and my J pouch is currently diverted with a temp ileostomy. In April, I had a fistulotomy done in the lower one and a cutting seton put in the higher one. My seton broke within 2 weeks. When I went back out to Cleveland in May for what was supposed to be seton tightening, I told my surgeon that I am 99% sure I am going permanent Ileo. My sanity is nearing its end at this point. I am not a fan of the setons and I am tired of going under local anesthesia... [ more ]
Pouchomarx where was rumor heard? I think somethings up.. his office emailed me back stating they cannot comment on that [ more ]
Jeffsmom Rumor, not sure I heard correctly but if I hear fact, I will surly let you know. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Haven't passed gas in 3+ days
J Jake54
John Curtain Anyone who smokes marijuana regularly will tell you that it relaxes them. If you have a gas build up relaxing seems to assist in being able to pass that gas. Another aid for some is a probiotic( the ones that have both the vegetable and dairy bacteria which seem to generate more gas. This also seems to assist in exiting same. I have posted my story in the medical marijuana forum. It does seem to have helped many pouch people. Most of you are lucky to be able to obtain it lawfully so being a... [ more ]
Scott F I think it's only as serious as any discomfort it causes. Lots of people have posted tips here. I suggest the search function will help you find the complete works. [ more ]
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J-Pouch ForumsGeneral Discussion
Food with beverage
H henrik
Nick8 ❤️
Inbetweener Hello, I'm new on here but a veteran UC patient, ileostomy for 13 years and now a j pouch and temp loop ileostomy, the pouch is not connected up yet because it's been very naughty...12 months of naughty! So my loop ileostomy is on quite a short bit of small bowel...and certainly I have been told not to drink too much before or after eating, to aid absorption of your food. And I do find that if I drink lots with food, my output is much much higher, and I'm probably just getting rid of what... [ more ]
Jan Dollar I have seen this recommendation often. It is to help prevent the stomach from emtying too fast and helping to slow digestion. I have pretty much always avoiding drinking much with a meal. I guess having colitis or a j-pouch most of my life, I just naturally adapted my eating habits that way. I do like to sip on wine with my dinner, but no gulping down a glass of water. But, you need to be sure to drink plenty of fluids between meals. I don't know about not drinking before eating. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
FDA Approves Inflectra, Biosimilar Similar To Remicade
CTBarristerCTBarrister
Jan Dollar It may be sooner, since it is not in direct competition with Remicade (no application or approval as a substitute/generic status). But, the makers of Remicade are fighting it anyway. Jan [ more ]
CTBarrister I had the same question if it was the other drug my Doc was talking about but it will not hit the market until 2018 I believe. [ more ]
Jan Dollar Thanks for posting this! I remember seeing something a year or so ago, but had not seen the recent approval. This is not considered a generic for Remicade, but just similar. They didn't apply for or get approval as interchangeable with Remicade. Still, it is good to have other options. I also am not sure if it would be a cost savings. http://www.medpagetoday.com/rh...logy/arthritis/57239 I wonder if this was the other biologic your doc was talking about that began with "I"? Inflectra. I also... [ more ]
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J-Pouch ForumsGeneral Discussion
Constant anal throbbing with urgency please help
S SonnyJ215
Inbetweener Hi Sonnyj215, i just wanted to make a quick comment about antibiotics...when you say that you have just started taking some, I assume you mean you have part of one course of antibiotics left that you now intend to retake? If that is the case, then you need to go back to your doctor and get a new course of antibiotics or enough tablets to make up a full course. Not finishing one course and then taking the few leftover tablets but not a full course will only build antibiotic resistance in your... [ more ]
Scott F Abscess formation has nothing to do with your diet. An imperfection in the surgically created seals, or an unfortunate reaction by your body to the surgery are much more likely causes. [ more ]
SonnyJ215 Thank you Jan as always.... I did resume my antibiotics before bed last night and I will finish them out ... But other question is there a reason they occur Is it something that I'm eating ? ... Again thx for reaching out [ more ]
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J-Pouch ForumsGeneral Discussion
Update on J-pouch
AS Allison Schur
Jan Dollar Thank you for returning and sharing your good experience. It is much easier to just go about your life and forget about the bad times. But, we do need to hear about the success after the trials and tribulations of early pouch life. You'll probably still have some bumps in the road but it appears you are equipped to handle them! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
1 week post takedown
ItsanewworldItsanewworld
henrik That's exactly where I was two weeks a go. So frustrated with the feeling of having gone through surgery three times and the hell that comes with that, only to end up with this flare-bs. I was going depressed but just out of the blue my BM slowed down, got thicker and I could go out without the agony of soiling myself. So yes, it gets better. For me it was week 2-3. Now I go 4-6 times a day, and sometimes once during night. That's acceptable to me. I do take a lot of loperamide/Imodium... [ more ]
Itsanewworld Hey. I am 9 days post op and knock on wood, i am starting to see the light. It does seem like my bowel system is getting acquainted with its wake up call. I'm actually able to see bulk building in my stool To handle your issues in the interim try the following: 1. Take Metamucil. One scoop in the morning before breakfast and one on the evening before dinner. 2. If that doesn't start to do some improvement, take Imodium to reduce number of times you go and it will help water be absorbed but... [ more ]
Sharon W I am 6 days post takedown and the last 24 hours have me feeling a Deja vu. This is exactly what a UC flare was like. No control, changing clothes more than 3 times, and add Butt burn. Please tell me it gets better. I tried the peanut butter trick, it didn't help. I am hoping it's just a temp setback. [ more ]
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J-Pouch ForumsK-Pouch Korner
AM patches/insurance
Rosie128Rosie128
mlangbau I actually buy U by Kotex Security Ultra Thin Pads, Regular, Unscented, 44 Count. I cut them in half. They adhere to my underwear and cover the stoma. I have used these for years after trying others that weren't as gentle on my stoma site. As a male, I used to get some funny looks buying multiple packs at the grocery store...but Amazon has pretty much solved that difficulty!! [ more ]
BillV Hi Rosie. Ampatches are made by Austin Medical in New Hampshire. They are very helpful in recommending the most suitable patch and will send you free samples. Austin will bill Medicare for you, but you must pay them the full cost at the time of your order and then Medicare will reimburse its share directly to you. If you want Medicare to pay the supplier directly, you will need to order from a Medicare authorized supplier like Edgepark or Byram. In order for your Medicare supplement to pay... [ more ]
JudithS Hi Rosie, I think the company you are talking about is AMPatch. I use them and my insurance and Medicare pays except for the co-pay. Their Phone is #800-223-9310. I found them very helpful and they will send sample packets, they have catheters, syringes, etc. I very much like the stoma covers unless I am really, really, having a problem. Give them a try if you want & get some samples. Good Luck. JudithS. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Different Medications
FrancesFrances
StarryNight Frances, please let me know if your great senator is able to help with the B&O suppositories. That would be wonderful for you and may possibly be something I may consider since I was denied by insurance as well. Since the B&O suppositories have not been available to me, my dr prescribed valium suppositories to help with the pain & discomfort until surgery, which is still several months away. This is my first month on the valium suppositories and they help somewhat, but not enough... [ more ]
Frances Hi Laura, I cant believe that all you pay. I take 10mg valium suppositories and will definitely call around about that. Do you take Lamotil or Imodium daily? I am supposed to take up to 8 a day if I need to. How long have you been taking it? The B&O suppositories help a lot more but have been denied twice and now I have my great senator looking into it for me. Thanks so much for the info. I will let you know how I do. Frances [ more ]
StarryNight Frances, My insurance won't cover B&O or valium suppositories either. However, 5mg valium suppositories (60 a month) cost me $60 at my local compounding pharmacy without insurance coverage. You didn't mention the dosage in your post, but if it's 5 mg you may want to shop around for a less expensive pharmacy. Laura [ more ]
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J-Pouch ForumsGeneral Discussion
Blood and white liquid output from pouch
R Roger1066
Roger1066 Thanks for the advice guys, I used a bed pan yesterday to observe what was coming out, it could be mucus but there's white bits; which I'm assuming is bits of small intestines mixed with blood . Thankfully its not the heavy kind of bleeding that I experienced post surgery , bathroom trips are accompanied with a slight urgency however. I have been prescribed some medication to stop the bleeding and I haven't emptied my pouch yet so who knows I might be on the mend . [ more ]
Jan Dollar I agree. It is normal to expel mucous from the pouch and even some stool to slip padt the loop ostomy. Jan [ more ]
Spooky Actually Roger, this is not really out of the norm. Your small intestine continuously produces mucous, and this will collect in the pouch and pass that way. So, what you are likely passing is mucous. From time to time, you may feel an urge to have a bowel movement and will pass mucous. There can be some minor bleeding from the surgery, though it seems that your doctors rightfully got this under control. Also, keep in mind that even though you have a loop ileo, your intestine is all still... [ more ]
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J-Pouch ForumsGeneral Discussion
Ready for Takedown... Best Ointment for Butt Burn?
bootstrapbootstrap
EFS Ilex Ilex Ilex.................. it eliminated BB for me back in 2000 and have never had to use it since. Gave some to our daughter-in-law for our grandson who had terrible diaper rash..... it cleared that up totally in just a day. So, just get some and use only a pea size at night and in the morning. [ more ]
Former Member I Second ilex paste I've tried them all and the only product which worked for was the ilex, instant relief and my skin totally healed witin 3 days of applying it. My experience was for the treatment of red raw, broken, weeping and oozing skin around the Stoma of the loop ileostomy. Since takedown, every so often I've used ilex to cure anal itching and a burning sensation. Also, every so often I apply a pea size amount just to the inside of the sphincter to treat what I believe is an anal... [ more ]
woodstock69 I have tried them all, i even spent $200 for 240 grams of cholystramine, so not worth it as of yet. Aquafor is good, I personally did not like calmoseptine, vaseline is good and cheap in large jars and does not stain your underwear like zinc creams which are so messy. I also had good results with nystop powder but when you go alot it comes off fast. Corn starch may work, I was told to keep it dry not moist. We are all different and our j pouches are too. Bidet is a double edged sword, if you... [ more ]
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J-Pouch ForumsGeneral Discussion
exercising with a stoma bag
GinLynGinLyn
Mysticobra I use convetec products also. I find them the most comfortable. And easy to apply and remove. Gin... Isn't it great to finally get your body back? I find that it has been nothing but good. Better knock on wood... Lol. Richard. [ more ]
Former Member I've used all brands of appliance during my time with a stoma and the only brand that has provided security and confidence are appliances by ConvaTec. I woukdn't be able to remove the ConvaTec self adhesive wafer/base without the use of an adhesive remover. For years I've had tremendous success using the ConvaTec Esteem Synergy two piece appliance. I've never had any need to protect my Stoma or the appliance during showering or bathing. I've swam in a pool, the sea, sat in a bath and also... [ more ]
GinLyn No, no real reason why. I think it is more that the system I have is working just fine, so no one is bothering to change it. I do have a very deep portion of old scar which I have to fill in with wax AND use a convex wafer AND a belt, so maybe that is why? No problems changing; the wafer pulls a bit when being removed, but I'm not having any skin problems. I'd like to switch to one that lasts more than one day just because I'm tired of doing it every day! I'll check into it more when I get a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pelvic Floor Dysfunction
L lauren972
GinLyn My mom is doing the therapy right now; thankfully it is covered by her insurance. And yes, it does help -- or at least, it is helping her! Having said that, the exercises are really easy and not much different from the kegels I was taught to do originally. The website from Winter Wish looks really great and has pretty much everything my mom is doing right now! So maybe give that a try first? Much luck, Gin [ more ]
winter wish hi, I have pelvic floor dysfunction. Most of the problem is frequent diarrhoea which aggravates the PF and causes it be to hypertonic. Check out this website where I attend physio, it give really goods steps for how to do the exercises. http://www.pelvicphysiotherapy.com/exercise-guide/ L [ more ]
lauren972 Thanks appreciate the advice. [ more ]
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J-Pouch ForumsGeneral Discussion
DONT GET DISCOURAGED - THINGS DO GET BETTER
bederyparisbederyparis
Sharon W Update: I had takedown last Thursday. Was in hospital until Sunday. Overdid it yesterday thinking I was superwoman, Just relaxing today. I think it is going pretty well getting up twice a night before the alarm rings to go to the bathroom. I have had some close times but so far been able to hold it except once yesterday. I will keep reading and posting as I progress. [ more ]
golflady1119 Sharon...yes, BMs had to start before they would give me any food at all! That happened late Saturday evening (about 24-30 hrs after takedown). I was never on a special diet afterwards. Except for the first day, I did not sleep any more than normal (very different from the first surgery where I napped almost everyday for a month or more!). I also never took any prescription pain meds after leaving the hospital (I live alone and didn't want to be loopy!)...just Tylenol and Advil. Also if... [ more ]
Sharon W ❤️
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J-Pouch ForumsGeneral Discussion
Decision on getting J-pouch
W wirlygirl
Dean227 Hi Im planning to go for pouch surgery in January as i had to have an ileostomy last year after i exhausted all the drugs available. I hope it works well as im in the construction industry and need to be at work [ more ]
Former Member Well, I had my Stoma for many years before I had my J pouch created, so you have plenty of time to make your mind up or complete your studies first. Body image was a huge factor for me and juding by your usernane, I assume you're female and therefore, I also assume, due to the type clothing young women like to wear, body image and appearance is far more of a concern. (sorry if my last statement offends) I was intially diagnosed with UC but when my colon was removed, it was decided I may have... [ more ]
BillV Welcome to this forum! My first surgery was in 1981 at Mayo Clinic in Rochester. My surgeon did a straight connection with no pouch (I was one of their first patients with this procedure), but experienced major frequency problems. In 1983, I returned to Mayo and had a j pouch constructed in a one-step operation. While recovering from the operation in the hospital, I received a registered letter from my employer (I was a VP of Finance at a large hospital) saying that I was fired. At the time,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch problems during night
KR Katie R
Vanessa It is either pouchitis which is treated easily or if you have that and upper GI pain it can be your gallbladder having alive atop it. Pouchitis is awful but comes with the territory. I didn't have it until 16 years after my takedown and pregnant so my advice is flagyl. It's a nasty tasting med but it works. [ more ]
stillgoing Hi katie R. I had takedown surgery just over a year ago and had no nightime leakage for about the first 8 months or so. All of a sudden it seemed I was starting to have discharge overnight. Not every night but most nights. I remember I was sick with a cold and took nyquil before bed, well that was horrible, I made such a mess. I will never take nyquil again and highly suggest no one else take it with a pouch. I also have pain when I feel food moving through my small intestine and my belly... [ more ]
Scott F It sounds like pouchitis to me. If so, a 10-14 day course of Cipro or Flagyl should fix you right up. [ more ]
See all 6 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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