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J-Pouch ForumsGeneral Discussion
Any meds to beware of?
J Jenmystique
suebear I'm a 12 year poucher and I take Advil on occasion. It's the only drug that works for me in that department. I have never experienced any negative side effects. I also took it all the years I had UC. I think the problem arises if you take it daily. Sue [ more ]
Jenmystique I hope NSAIDS don't cause any issues for me either since Tylenol doesn't really work for me. [ more ]
skn69 I have been taking NSAIDs continously for the last 5 or 6 yrs...up to 500mg at a time/2xs day for intenste inflamation...for now at least I am doing ok and my rumy says that it is ok...my GI says not to worry unless I feel that it is a problem...as for my hair...yup, after every major run of surgery I lost up to 50% of it but it has always grown back eventually...sometime thicker than before...my only medical problem with pills is the coated ones or slow dispersion ones that seem to run... [ more ]
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J-Pouch ForumsGeneral Discussion
Question
R run4life
jodiloveslife Girls with Guts, a non-profit is looking for people who have donations!! girls-with-guts.org [ more ]
D. Nocerino I brought mine to the hospital that did my surgeries and they were happy to take them. I used holister which is a good brand and the hospital used supplies that weren't very good so I hope they make the switch over [ more ]
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J-Pouch ForumsGeneral Discussion
FAP Question
InstigatrInstigatr
Chuckus Yes, those of us with FAP/GS can have additional bony growths on our jaws and such, extra teeth too......sometimes it can turn cancerous, most times it isn't. Also, I'd like to give you some information. FAP is a mutation within the gene, not a gene. FAP = GS and GS = FAP they are one in the same. Not trying to offend you, but, just want to make sure you have the terminology correctly and are using it correctly. Have you had Upper Endoscopies done every year with a side viewing scope? Have... [ more ]
BillV When I was 12, my dentist pulled a baby tooth to allow an adult tooth to come in. Attached to this tooth were numerous small teeth. This dentist had never seen this condition before and did not attribute it to FAP/Gardners syndrome. After I was diagnosed with that condition at age 35, my surgeon at Mayo Clinic noted a bone growth on my lower jaw that he stated was attributed to Gardners syndrome. In over 30 years, this growth has not changed in size and no trace of cancer has been found... [ more ]
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J-Pouch ForumsGeneral Discussion
Learning to control between surgeries
knitwittyknitwitty
knitwitty I just wanted to say thanks to everyone who replied, it's reassuring to know that once I have the takedown it will be easier to control. Hopefully that will be next month, so long as my pouch is all healed for the dye test. [ more ]
CeeeeCeeee Let those who tell you to practice kegels in order to hold back that mucous try it themselves! Absolutely fruitless for me! After takedown no problem! [ more ]
UCWarrior2010 I also had the first two steps done at the same time and was having controlling mucus initially. It has become a lot better now and I am able to control it. But, I did complain about it to my surgeon at the beginning and asked him if this was an indication that I might have leakage once the j-pouch was connected. He told me that isn't the case because once the pouch is connected I will know that I have to go to the loo because there is gas. Right now, there is no gas that is why the mucus... [ more ]
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J-Pouch ForumsGeneral Discussion
things getting better
Holly MHolly M
kathy smith That's great news Holly! Sometimes it DOES take that whole year for things to settle down and settle in. Roberta - I'm so sorry you're continuing to have problems. You've been suffering for way too long. It's not good when the doctors are 'stumped.' kathy [ more ]
Holly M RLC, hopefully theY will figure out what is going on with you. Like I said I was scared to say this or put it in writing, always waiting for the other shoe to drop. I thought I was going into menopause after my 2nd surgery but 4 months later things started back up on schedule. I am 53 and still regular as rain in that area. [ more ]
RLC Holly that is great news! I wish I could say the same. The j pouch seems to be getting stronger for me as well.It will be 1 year on 4/30. I am still having some complications in other areas. They found blood in urine and the girlie issues (if u know what I mean) I had a biopsy to see if I have an infection. Not sure what is going on in that area. I certainly have my OBGYN stumped! I went into menopause right after the surgery and I am only 49 now. Not having a good time yet! Happy St. [ more ]
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J-Pouch ForumsGeneral Discussion
Help!! Please!!
Kline84Kline84
Scott F The rash from shingles generally hurts like hell. I've read that it can occasionally be painless, though that's more common in children. The combination of two unusual attributes (painlessness and the weird migraine-like headaches) means (to me) that other diagnoses have to be seriously considered. I would definitely follow up with your doctor without delay. If it's a drug reaction the good news is that you did the most important thing already: you stopped the meds. [ more ]
Kline84 Well I went to the ER an the doctor seems to think it is shingles... He said the headaches are a little strange but I need to keep an eye on them and if they start getting worse they want to do a brain MRI. The rash is not real painful but the headaches are horrible! [ more ]
Jan Dollar Sometimes drug rashes do not appear until after the drug course has been completed. The migraine type headaches could be coincidental, but the fact that they are rapid cycling, with visual disturbances would worry me more. I'd be less worried that this was an allergic reaction than something going REALLY haywire, like an imminent stroke coming on. Yeah, I'd go to the ER. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone else with Wegener's Disease?
G gutless1993
gutless1993 Thanks, Paul. I'm so happy to 'meet' someone else with Wegener's. I have it in my lungs and kidneys but I'm in remission. I self-inject methotrexate weekly and absolutely hate doing it. I'm monitored monthly for Wegener's with blood work and urine samples, and breathing challenges/chest xrays every 3 months. My husband jokes that I'll never die from anything as my doctors watch me too closely. My rheumatologist has 3 patients in her practice with both UC and Wegener's and she feels there is... [ more ]
Paul Knaapen One follow up comment on pity parties. They may be a good temporary release of the frustration, but you must return to a positive attitude and being thankful for all the good things in your life. I strongly believe a positive attitude helps healing and perseverance. Good luck. [ more ]
Paul Knaapen Yes I had both Wegener's and UC for 15 years. Wegener's was mostly in my lungs. After local doctors not getting WG under control I went to Cleveland Clinic. They put me on prednisone, cytoxin and methotrexate. After I got in remission I just take methotrexate weekly and it has controlled it well for 10 years. However, last year my UC went extremely bad, they could not get it under control and I wound up with a Jpouch 11/12. Through it all the Wegener's stayed in remission thank God. [ more ]
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J-Pouch ForumsGeneral Discussion
My Ulcerative Colitis Success Story :)
KSamsonKSamson
Kia Very interesting. I have not eliminated preservatives, but I know with certainty I bloat less without carbs. Less urgency, too. The difference is quite dramatic. I am able to eat wheat without problems. I just totally eliminate all white carbs. My GI seemed to concur this is a good way to go. [ more ]
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J-Pouch ForumsOstomy & Skin
Advice needed - perm ileostomy surgery 11/14/12
R RoC
itsnotsherry Hi again Caty, I'm glad you can handle yours so well and hope mine get easier to deal with. I had 7 last time, surrounding my stoma. They just wouldn't respond. I only hope this time is easier. I don't regret my decision either. Just tired of pain one place or the other. I saw dr. Nogueras in December and he was so happy we went ahead with the surgery. I look and feel so much healthier. This too will pass! Thanks for the advice! [ more ]
Caty Hi Itsnotsherry, It's hard to remember, but I think I get about 2 to 3 occurrences per year--all little ulcers that I jump on with the Protopic. I know immediately when I have an ulcer starting because the area hurts to the touch and I can see my skin turning a bright red color past the flange white tape. It's probably going to be a chronic condition for the rest of my life but very controllable thus far with Protopic. It's the same as when I had my j-pouch. I could tell when I was having a... [ more ]
itsnotsherry Hi Caty, Thanks for your quick response. I put the protopic on it as soon as I saw it. When did you have it prior to december. I am wondering how often I may have to deal with this nonsense. I had such a difficult time gettting it to heal last time. I didn't respond as well as you did to the protopic and had a long stint on steroids as well. I was praying this was a one time thing for me. Thanks again! [ more ]
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J-Pouch ForumsGeneral Discussion
how to use this board
ML Midnight Lady
Scott F Here's part of an answer (at least going forward): when you post you can turn notifications on for that discussion thread, with various notification options. It's right under "Add Attachment?" Others may me able to advise you on sophisticated search strategies. [ more ]
Jan Dollar All you ave to do is click on your screen name, and a drop down list appears. Choose "view recent posts," and a list of all your posts will come up. Easy peasy, lemon squeezy! Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Trouble after surgery #2 of 3
U UCfree2012
Jan Dollar Yes, or it could be reactivating, laying dormant until your resistance is low. But, don't feel stupid, most doctors "knew" that you could not get C. diff in the small bowel, so removal of the colon would cure it. But, alas, they were wrong and numerous cases of small bowel C. diff were later documented. Jan [ more ]
TE Marie Jan, I fell really stupid, I thought c-diff was only in the colon and/or j-pouch. Hello the j-pouch is made out of the small intestine. So could part of my continuing all the time pain be a simmering c-diff in my small intestines that gets worse every once in a while? [ more ]
TE Marie I'm glad you are doing better and are at home. Maybe now you can get some rest! I hope they test your output a few weeks after your course of antibiotics. I've had too much experience with c-diff and Jan mentioned it. You have to wait that long after taking antibiotics to test. I'm glad you are home and on the mend [ more ]
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J-Pouch ForumsGeneral Discussion
Diarrhea
A Allison
WW_Domenic I found keeping my diet mostly bland to help alot. I also take a probiotic a day along with fiber pills. Peanut butter also seems to help "thicken" things up. Best of luck! [ more ]
Mia A Allison, I know how you feel. I can take Immodium and it does help some. When I have insurance and can get a dr to prescribe it to me, Lomotil helps tremendously. Also, if you are diagnosed with pouchitis, anti-biotics will help almost immediately. I FINALLY got myself off sweet-tea which is pretty much a staple in Texas! That also helped. Haven't tried the pro-biotics, but they seem to be helping everyone else. Good luck. Hope you find relief soon! [ more ]
Pouchomarx CHA CHA CHA [ more ]
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J-Pouch ForumsPouchitis
7 Day Prednisone Taper
J Jpouch8888
Jpouch8888 I am actually taking the 7 day prednisone taper for a sinus condition. It is something like the bottom (cannot remember exactly). 40mg - 3 days 30mg - 2 days 20mg - 1 days 10mg - 1 days My pouch is actually doing very well! I notice much less frequency and much more former (but still passable) stools. I think this course is way too short to have any side effects. Maybe it is worth considering taking prednisone for a while to heal things and that could help reduce dependancy on antibiotics. [ more ]
Jan Dollar Unfortunately, sometimes it does not matter what you do or not do, if you have autoimmune disease, things can go haywire. It can be purely random, and many of us need immune suppression, because the immune system is sort of hyperactive. That is why herbal supplements that "boost" the immune system are not recommended for those with autoimmune disease. But, yeah, manipulating the immune system can be a double-edged sword, slicing both ways. Jan [ more ]
CTBarrister Poucho, I experienced some apparent skin manifestations of a weakened immune system (warts in legpit/pubic area, yeast infections in armpits and legpit, hemangiomas on my hands), all at once, after taking 9 mg Entocort for 7 months. These symptoms were attributed to the Entocort by both my GI and my dermatologist. I have since reduced the Entocort dosage and the skin issues have cleared up, except for the hemangiomas, and I don't know when they will go away. It should be noted that in... [ more ]
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J-Pouch ForumsGeneral Discussion
12 years post-op-still not feeling well
Mia AMia A
skn69 Mia, The green goo, as I call it, not sure of the real name, is part of a series of 5 or 6 'healthful' juice drinks that are sold in the refridgerater secion in most upscale grocery stores and in those huge grocery stores that you need a member's card to get into...there they sell them in 2's...they contain grasses, herbs and other greens and make my pouch very happy when I am in the States...they carry other flavours too...I also drink a lot of pomegranate juice sometimes mixed with... [ more ]
Mia A CTBarrister, we make sweet tea by the gallons here! I use 2 regular Lipton tea bags, boil them and stir in 1 cup of sugar and fill the rest up with water. It's good stuff! But I will no longer be drinking it! Most of the restaurants and fast food places have it. McDonalds was one of my guilty pleasures. I like the PB idea! I think I can put it down to not feel so bad. It's been almost 3 days and I'm not shaking or having withdrawals! Lol! And the Gatorade I have is G2, I just happened to... [ more ]
Jan Dollar The worst thing about sweet tea is that dang high frucose corn syrup. If you must have sweet tea, try artificial sweeteners, like Nutrasweet or Splenda, which generally are well tolerated without causing diarrhea. Or, even using table sugar is better han drinking the commercially sweetented stuff, like you get at McDonalds. Gatorade is too high in suar too. Try G2 and see how that goes. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Recent Takedown
C Chris_JPouch
TE Marie Are you taking metamucil like fiber and imodium? I was on a lot of it under the direction of my surgeon following my surgery. I took Metamucil in the gelatin filled caps as I hate swallowing it. Some folks like the wafer/cookie like form. The secret is not to drink all of the water it says at the time with it. This allows it to soak up more water in your j-pouch and thicken your stool. This does not mean you are to hold back on drinking all the water needed to keep your self hydrated daily. [ more ]
Murray Sounds like you might have a small blockage.I was like that and an xray confirmed it once it was gone all was good. Murray [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch failure rate?
K Kia
mgmt10 Kia, My sister has had her j pouch as long as you and it's still going strong! [ more ]
notsotough Unfortunately there willnot be an absolute answer to your question because pouch surgery was a relatively new procedure and only in recent years has been performed in greater numbers so the figures are being collected on older pouches and older people. I understand from work publihed to date that if you have a well functioning pouch the odds are still in your favour for it continuing to work- I think many people on the forum have looked at this and will possibly be able to report on their ... [ more ]
skn69 Kia, I would check out the CC to see if they have stats along with the Mayo (do they still do them?)...they would be my references... I know a lot of people who are 'getting on in their years' and do no have pouch problems...it is a very individual thing...some k pouchers have had theirs for over 30yrs without a hitch and others, like me, had to go through the loops to get things fixed, repaired and up and go again...(by the way...it had never occured to me either!) Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Hernia
D Dog
JenniferG Not real encouraging but I had a large hernia repair in Oct 2012. I think my hernia is back. Not sure where the mesh is but it feels the same now as it did before surgery. blech [ more ]
Jan Dollar Yeah, that is a pretty small repair. How well the sutures hold largely depends on the condition of the fascia, if the edges can be brought together easily, and if it is in an area that will not be exposed to undue tension. My incisional hernia was midline, the size of a grapefruit, and actually a defect of where a suture had stretched out the fascia to that size. So, you see, a totally different situation. This is why each case should be evaluated individually. Jan [ more ]
Dog Saw my surgeon today. He said he placed sutures in my fascia, and the spot he had to repair was 1/2 to 3/4 of an inch long. I don't understand how sutures don't pull through the fascia, leaving a new hernia, but I guess they don't. He also explained that my small intestine was to close to the repair. Mesh would have had the potential of causing future problems (adhesions, etc), so that is the reason he opted not to use mesh. Pretty happy with the procedure and the outcome so far. . [ more ]
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J-Pouch ForumsGeneral Discussion
Haemorrhoids!
Luton MattLuton Matt
CeeeeCeeee Mine don't bleed much but, then again, I never have to strain to empty my pouch. The effluent is quite liquid and maybe that helps my hemmorroids behave. If I ever experience discomfort I eat oatmeal for a couple of meals and it settles my gi system down....at least what is left of it! Best wishes! [ more ]
Scott F They can bleed a fair amount, though usually not more than the drip,drip, drip level. They can bleed enough to make you anemic. And they often bleed much less or not at all. As you say, Flagyl doesn't help at all. [ more ]
Luton Matt Do they bleed much? Only I've experienced small amounts of blood for about two weeks (wasted a course of flagyl if it was haemorrhoids). I'm a bit sceptical they can stay bleeding for that long! [ more ]
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J-Pouch ForumsK-Pouch Korner
K-Pouch Dr.'s in Europe?
SA Sydney AZ
Sydney AZ Thanks so much everyone! [ more ]
lesrich1 I hope this puts you at ease. I know you are new at this and I am an oldie. I have traveled to Russia, Austria, Italy, London, Nova Scotia and leaving for Barcelona in 2 weeks. I travel with extra supplies in different cases. I have never had an emergency. Some people travel with an antibiotic,I never have. You still are getting comfortable with your pouch.You will enjoy what life has to offer outside the states. [ more ]
skn69 I have been fortunate to have met some excellent doctors and surgeon and have rarely had major difficulties while away (more likely at home)...if you are traveling and need a contact then please don't heistate to contact me while in Europe if a problem comes up...I usually check out the site daily...if not PM me and I will give you my email for emergencies. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Pelvic Biofeedback at Cleveland Clinic/or in MI for Prolapse
J Jaa786
suebear No, I had biofeedback due to incontinence. It worked, by the second appointment I was much improved. Sue [ more ]
Jaa786 Suebear-did you have biofeedback for prolapse? Did it prevent you from having to have surgical repair? Akk3769, Guesthouse is usually where I stay when at CC and it is quite convenient-was thinking of somewhere else that has shuttle which would be good location off CC campus but probably will end up at Guesthouse. Thanks for replies! [ more ]
Akk3769 I go to CC and I actually just saw Bo Shen about a month ago. I'm not sure what your testing is about but when we go there we stay at the Guesthouse which is right on the CC campus. It's about 90 to 100 a night which is the cheapest. You can also rent a room in one of the CC houses which I think is 30 a day. You can call CC and ask them about that. Good Luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Ostomy site scar revision?
A Andreathmpsn
skn69 I have 1 old ostomy site (colostomy) and 3 old stoma sites from when they had to move my k pouch...they all were left open to heal from inside out (each surgeon has their own opinion/method) and they all sunk (looks like I was in a knife fight)...I had hernias in all of them and had them fixed from the inside out but the outside still looked sunk and deep like nasty stab wounds (kind of what they were)...my plastic surgeon tried to fix them but they just continue to sink on me...so the scars... [ more ]
Dog My ostomy site had an infection and they decided to let it heal from the inside out. I took a picture every day until it healed completely. Mine didn't sink back in, just an oval scar. Not sure that I've ever seen a bullet wound to compare it with. [ more ]
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J-Pouch ForumsGeneral Discussion
Help!
F FrustratedButFighting
Dog If I remember correctly, the gas comes and goes as your system wakes up and adjusts to things. I just had surgery to repair an incisional hernia, and I lost my appetite for about 4 days. Not having an appetite is normal, at least for me. However, I believe it's important to eat, just like you are doing, to keep the amount of gas in your system minimal. Hang in there and try to relax, if you can. [ more ]
Kia I would say totally normal. It takes time, but it will improve. [ more ]
Murray Im one month post takedown(yesterday) I had gas for all most two weeks the first week was the worst. hang in it will get better. Murray [ more ]
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J-Pouch ForumsGeneral Discussion
Coca-Cola
LorsallLorsall
Kia Yes, Coke does wonders and there is no substitue...except, perhaps, Ginger Ale. I worked at a small pharmacy in HS...this was about 25 years ago. They carried bottled Coke syrup behind the counter for medicinal purposes. I bet if you hunt around, you can still find it. I am guessing it does have the caffeine....but I don't know that much about it. [ more ]
suebear A couple of sodas a month is not going to kill you, or take away from your healthy way of life. Sounds like a very inexpensive and workable solution to your problem. Sue [ more ]
Lorsall I thought about trying the Coke with real sugar, but the only place I have seen it is Costco, and I didn't want to buy that many bottles if it wasn't going to work. I never thought of a Mexican store- I could buy one bottle, and if it worked then stock up wherever it was cheaper. I can't believe it has come to this. I try to eat and live as healthy as possible, grow an organic garden in the summer and find out what my family is eating that day by what is ready to harvest. Soda pop is a very... [ more ]
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J-Pouch ForumsGeneral Discussion
I need GI recommendation for the California East Bay Area
kiwiPouchnUSAkiwiPouchnUSA
vbhalla I had my Jpouch surgery done by doc Kim in dec 2003. He is in Concord, CA. Do a google search on Bay Area Colon & Rectal Surgeon. There site will come up. [ more ]
Jan Dollar I have a scope coming up with him soon, and if I can remember, I'll ask him if he has any recommendations for southern Alameda County or North Santa Clara County. Docs move in and out of the system all the time, but they tend to move in more than out (since they can focus on patient care and not have to screw around with insurance stuff). I just learned a few years ago that Kaiser requires all their docs to become board certified within a year of hire. When I had my cardiac cath procedure,... [ more ]
kiwiPouchnUSA Thanks Jan. I'm with Etna -so no dice unfortunately as Fremont would be perfect. [ more ]
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J-Pouch ForumsGeneral Discussion
Normal size of anastomosis outlet?
J jeane
mari60 ..sorry I cliched before finishing writing... ballon dilation. good luck [ more ]
mari60 I had once a finger dilatation from the surgeon and was very painful.Since then I do self dilatation every day o two with rubber glove and lubricating cream.I have been doing it x over 1 years and so far is working. have you tried it?may be may be worth a try before the ballon di [ more ]
liz11 jeane- I had a dilation under anesthesia prior to my takedown as my surgeon couldn't even do the finger thing in his office and I was suffering from pouchitis - even pre-takedown. It definitely worked. And it really was not a big deal of a procedure. Few days on narcotic pain meds and bleed for a few days. But really nothing more than a minor inconvenience. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
C-S vs Vaginal Poll
ICCICC
magcher I had a baby when i was 16, easy vaginal delivery. I had my pouch surgery when i was 22. My next baby came along when i was 27. I decided to try for a natural birth , with no epidural so i could truly feel the pushing part. We did the rocking method , where they rocked me on my side to move the baby deeper into the birth canal to limit my pushing time. It was painfull, but he was out with one push and no complications other then some discomfort using the washroom for a couple weeks after. My... [ more ]
TE Marie ICC - Congratulations! I remember your potty Cake and am happy for your upcoming baby! It's nice to hear you've been doing so well. Please post and let us all know how everything goes. [ more ]
clz81 I had my pouch done was I 28 and had a vaginal birth when I just turned 30. That was about 20 months ago. I only had a first degree tear (no biggie). No issues with incontinence at all (unless a bad bout of pouchitis, but that's pretty rare for me). As Jan said about experience with prior deliveries, I went into labor knowing that I had an amazing experience with my daughter (which was pre-pouch). We monitored by son's head size and weight near the end to make sure he wouldn't be bigger than... [ more ]
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J-Pouch ForumsPouchitis
Pouchitis or crohns....?
M mussen
mussen Thanks Jan, It's not entirely confined to pouch. next step is to look from the top. Just hate being in limbo with it all. At least I'm not actually getting many symptoms etc at the moment. M [ more ]
Jan Dollar I would think that the additional symptom of erythema nodosum would point more toward Crohn's, but it is common with UC too. This could also be a UC type thing, as it would respond to Pentasa. If it is confined to the pouch and not in the prepouch ileum I would be more inclined to say UC over Crohn's. But, either way, it sounds like some form of IBD. UC or Crohn's, not sure that it matters. Jan [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
NO Libido!
K KiwiPoucher
skn69 Thanks TE, He is doing so much better, house bound due to post op angioplasty requirements and a major snow storm here (yup, France got hit by a 'Canadian type' snow storm in March!, a historical almost first!)...so we are locked in and trying to recover...I feel like a skinned cat for now...All of my nerves exposed and screaming...the least amount of stress and I am off the Richter scale but I will be fine in the longrun...for now, we have to find our way back to each other and life...and... [ more ]
TE Marie Sharon, I hope he is doing better and that you are both feeling well. [ more ]
skn69 Funny but my greatest fear was that I would say no for so long that the day that I finally said yes, he wouldn't want to any more! Kind of put out the fires...well many years post op (not really the 1yr anniversary of my last surgery is tomorrow!) and I still worry...my libido comes and goes...so does his...and we have a hard time wanting each other at the same time of day/night/month...I miss the closeness that it brings to us but with all of the years of pain and suffering, hernias, leaky... [ more ]
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J-Pouch ForumsGeneral Discussion
Motility. What does it mean?
T trish1968
Lorsall Motility is the movement of food through the GI tract. If you have a motility issue then there is something causing the stomach or intestine to slow down (or stop completely in severe cases). Typically if you have a motility disorder you will be prescribed pro-motility drugs such as Reglan, Erythromycin, or Domperidone. Some doctors will try other drugs as well, depending on your response to these three, or what they believe to be the cause of the problem. The most common cause of motility... [ more ]
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J-Pouch ForumsGeneral Discussion
Entocort
Akk3769Akk3769
jeane This post is directed to Chris or anyone on this thread who may have any advice. I have been on the anal meds Chris is taking for his pouch issues and have been for over a year with very little success. I am wondering how they diagnosed crohn's disease? I am having so many similar issues and for such a long period of time and no one has diagnosed me with crohns. As a matter of fact my GI tells me not to worry about crohns. I have tried all the anal meds with almost zero luck for complete... [ more ]
Chris M "both barrels blazing" That is a good one Jan! Both my GI at Vanderbilt and Dr. Shen said that they wanted to aggressively attack the possible Crohn's because they didn't want to risk losing the pouch. Needless to say I am happy that they feel that way because I really don't want to lose it either even though it has been such a pain in the butt (no pun intended)..LOL [ more ]
Jan Dollar I believe the Entocort and Pentasa are both for the cuffitis AND the Crohn's, since they both treat throughout the intestines. Sort of a double barrel shotgun approach with "both barrels blazing"! The idea is to get everything in their path. Frequently with Crohn's more than one drug is required for induction of remission and maintenance. And remember, Crohn's can affect the rectal cuff too... Jan [ more ]
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J-Pouch ForumsGeneral Discussion
itching!!! Oh the horrible itching!!
J Jenmystique
Akk3769 depending on your diet, sometimes fruit, fruit juice, or anything with fruit in it makes my anus itch like crazy. No idea why but that's what it does to me haha [ more ]
JohnG Thanks Jan I appreciate the input. I have found Balmex to work well where other products like Desitin only help to bridge the gap until I find a store that carries Balmex. Poor planning due to a crazy travel schedule. [ more ]
SteveRM Balneol should stop the itching. I use it almost every day. It has yeast fighting abilities and cleans the area. My surgeon recommended it to me. You can get it at Walgreens or Amazon. [ more ]
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J-Pouch ForumsGeneral Discussion
Ok... so what's the next step?
SpookySpooky
vstRN I agree, you need an endoscopy. I recently experienced a slow bleed. I became so severely anemic that I was in the range for a blood transfusion (decided to go with a ton of iron infusions instead). It turned out to be ulcers going around just the inside of my stoma from the old stoma site - I guess a point of weakness (I'm currently diverted about to undergo a pouch advancement with mucosectomy). All is fixed now, but it really sounds like you are bleeding somewhere and need to take care of... [ more ]
Spooky Good to know about the NSAIDs - I do have tylenol so that will have to make due for cramps if necessary. I will ask about the endoscopy. I hope to hear back from the GI today. [ more ]
Jan Dollar As long as you have this bleeding issue, you cannot take even the occasional Advil, Motrin, Aspirin, Aleve or even Alka Selzter! I would inquire about the camera pill endoscopy. Jan [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Where is this butt pain coming from?
DN D. Nocerino
D. Nocerino Yeah for sure I won't be on prednisone there were diligent to get me off it because I was on such a high dose while I had UC disease it took months to taper off. Will definitely ask my doc tomorrow about it. I'm also starting to get like an upset stomach but my diet has nothing to do with it. [ more ]
Scott F I periodically get something called "piriformis syndrome," which sounds similar. It can be quite crippling, and for folks like us it's a problem when it takes 10 minutes to stagger to the bathroom. You can find stretches for it on YouTube. If it's your priformis muscle those stretches will definitely let you know. I also discovered by accident that prednisone quickly quieted down the inflamed nerve that seems to cause the pain. No one is likely to prescribe it for that, though. Good luck! [ more ]
D. Nocerino Definitely isn't an abscess, feels more like I pulled something awkwardly. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Pain under scar tissue when working out...
W WW_Domenic
phoenix08 I have experienced a pain similar to what you are describing when I go from a curled up position to standing straight up. This only happens when I move too fast. The pain is sharp enough to take my breath away.I usually have to go back to my beginning position and stretch my muscles out slowly. I just assumed it was scar tissue pulling. And, yes, OUCH is the word for that because it does hurt. [ more ]
WW_Domenic Thank you all for the information. I'll have to make an appointment with my surgeon. I haven't seen him since the take down. Just see my GI doctor every 6 months. [ more ]
Scott F Thanks for sharing that reference, Jeff. I wasn't aware of it. And thanks for the additional context, Jan. [ more ]
See all 11 replies...
J-Pouch ForumsK-Pouch Korner
Trapped gas?
B Bodoni
skn69 As my dearly departed sister-in-law once remarked...everything causes gas! The trick is to combine your foods so that they create the least amount of gas possible...I had a lot of success with a dissociated diet where I never ate carbs with protiens and kept my fruits to seperate meals...I ate fruit and drank fruit juices in the morning and for 4pm snack, ate either meat/fish/chicken etc with veggies for either lunch or dinner and had carbs (rice, bread, pasta, potatoes) with veggies for the... [ more ]
Sydney AZ I get HORRIBLE gas pains and buy Beano and Gas X by the case! I was told that sugar causes excess gas - and to eat a high protein diet... [ more ]
JaniceM I chew gum. works like a charm for me. [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy and pouch pain
N NaomiLI
jpouch2008 Glad you are getting some reliefé I am in a similar situation and my GI just told me I have a fissure and predcribed Cortifoam. Am a bit relunctant to take it since I am in my first trimester. What did your doc precribe? What cream? Medical pads? Also - silly question...but a is a sitzs bath the insert you place on the toilet seat (filled with warm water or something else added?). I somehow managed 5 years with a pouch not knowing really what is it or where to get one! [ more ]
NaomiLI Thank you Clicky and Colleen for both of your responses. I really appreciate the feedback! I went to see my GI doc about the issue I was having and it turns out that I have 2 anal fissures. Doc prescribed cream and also recommended that I use medicated pads after bowel movements. I've been feeling a lot better since [ more ]
Colleen2001 Hi Naomi, Congrats on your pregnancy! It is a very exciting time and I hope the pain doesn't diminish this for you. As for the pain, I experienced pain in both my pregnancies. With my first, my GI thought I may have pouchitis and I was treated for it. It was very close to the end, so I'm not sure it that was really the cause, but being treated for something put my mind at ease. My second baby caused a ton of pain, mostly what I felt was just general pouch pain, but again, not until I was a... [ more ]
See all 4 replies...
J-Pouch ForumsWomen's Health & Pregnancy
pregnancy and incontinence
armywifearmywife
jpouch2008 JillM, Great advice!! LOL! Just saw my GI and he prescribed Cortifoam for my fissures and spasms. Do any of you know about it's safety in pregnancy or had any experience with these types of meds? [ more ]
JillM My high risk OB was fine with me taking immodium, but like you I chose not to take it. Congrats on the baby girl! My son is 7 and my daughter 4 1/2 and they are such a blessing. Enjoy this last month as much as you can. Go see every movie and eat out - it'll be the lastmovieand HOT meal out you'll have for a while! [ more ]
clz81 My understanding with the loperamide was as Sarah said...there is not sufficient data to deem it safe or unsafe. While it was a category "B" according to my OB, my GI said in his book, it came up as a category "C" for pregnancy. The more I looked into it, depending on who was writing the guideline, it was both B and C. I chose not to take it due to the lack of information out there, but my OB didn't seem at all worried. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Undigested pills
D Darlin
Jan Dollar Sounds like you have pouchitis or some other GI thing going on. Maybe a short course of antibiotics is all you need to put you back on course. Since it has been quite a while since your surgery, it seems that this is something new. You really need to absorb those pills, so you need to call your doctor and get advice. Like Sharon said, find out if you can crush them. I think most of the type you describe can, but it depends on whether they are time release or not. Are you taking anything to... [ more ]
lovedby2 I've experienced this, but only when my GI put me back on Asacal after my takedown. I lasted just a few days, because the pill was coming out partially whole, jagidy... It was weird! Some pills, like mentioned above digest differently due to the outer coating it has. Amazingly, off subject, but just as weird, I was self dialating about a week ago and a piece of plastic, stretchy, came out from down there! About the size of a quarter, not sure just how it got there, especially since as most... [ more ]
skn69 Don't Panic Darlin (love that name!), A lot of different processess could be involved here from what you are or are not eating: certain foods or liquids cause you to digest quicker (just fluids like coffee and juice, only eating fruits or veggies...), carbs like rice, bread and potatoes slow things down to allow those pills the time to breakdown and digest, meats are also slow digesters but all veggie/fruit meals can go in and out in under 1/2hr which may mean that those pills are coming out... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Humera or Cimzia
M milner06
Jan Dollar I think you probably were experiencing allergic type reactions to the Remicade, which seems to be fairly common. Since it is a mouse based protein, you are more likely to form antibodies to it. Once you form antibodies, each subsequent infusion could induce a more severe reaction. Humira and Cimzia are fully humanized proteins, so less likely to cause antibody formation, and when they do form, the result is more likely to just be reduced efficacy, not severe allergic response. I was on... [ more ]
See 1 reply...
J-Pouch ForumsPouchitis
Pouchitis two months after take down
F feirs1
Scott F Even those of us who have to stay on antibiotics generally do fine. It's unsettling while you're searching for what works. [ more ]
clz81 I developed pouchitis about 6 weeks after takedown. The Cipro was amazing, but once I was off of it, the pouchitis came right back. I unfortunately have had it chronically for almost 3 years now. My doc did tell me that getting it so early and then relapsing again after treatment does put you in the "more likely" category to have it chronically. However, I wouldn't worry about that yet! Some people get it early once and never again. [ more ]
LilMoe03 My son was checked in dec 28 and didnt have pouchitis. He is 9 and in june been a year he had colon removed. He says while he sleeps he dont feel when he wants to.poop and he ismhome wchooled cause he hasnt gone back due to the pressure he feels.always to.use bathroom. I dont know what to do. Doctors say it gets better. [ more ]
See all 9 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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