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J-Pouch ForumsGeneral Discussion
The More active the better!
AlexisAlexis
vanessavy The more your mind is free to think and stress about your illness, pain, etc. the more it just feeds the body and brain those signals. I try to force myself to get up and move. Sometimes I need a sliver of Norco to do so but it helps. Reason I didn't finish appealing my SSDI. I need to work and stay busy talking to people and feeling normal. [ more ]
Spooky So true! If I didn't go for 15 hours I might start worrying about a blockage. *LOL* [ more ]
Epic Scotsman I take immodium for now. I'll probably try to go off of it in the future. On the night in question, I did have to get back up about and hour later (guess I missed a bit). After that, I slept just fine. [ more ]
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J-Pouch ForumsGeneral Discussion
Pooping Schedule and RE-Training
fqfq
Laurie49 In the beginning, scheduling your poop is like trying to schedule a nursing baby. Fagetabotit. It takes up to a year for your pouch to grow to full capacity and holding it for as long as you can, helps that process (and strengthens muscles). I know in the beginning for me, I was running to the bathroom constantly because I didn't know what the exact feeling was when I had to go -- so any/every twitch had me in the bathroom. I was also obsessed with counting the number of times I went --... [ more ]
Rocket I agree. My pouch also has a mind of its own. I do try and hold it in as long as I can sometimes. That is one of of training your pouch. I eat a big lunch and small dinners most of the time. I still have not gotten into the habit of not eating later then I want. Work being so busy, I sometimes do not eat dinner until 8:00. Based on what I have read on this post, I try to make my dinner just soup. Rocket [ more ]
mgmt10 Also, you cannot deny the law of physics. A lot of food going in= a lot of poop coming out. Little food going in= less trips to the loo. Maybe try making your lunch the larger meal of the day and your dinner smaller. I have done this and it actually works but it's not always practical for me and my schedule plus I have a family to cook for. [ more ]
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J-Pouch ForumsGeneral Discussion
VSL #3DS problem
TE MarieTE Marie
TE Marie The young lady at Walgreens called and my VSL#3DS prescription will be there tomorrow and their supplier will carry it in the future. In one day it went from not going to carry it anymore to they will be. VSL's website that it is carried by Walmart, Kmart and HyVee so I was getting ready to call them, so I don't know if they carry it locally or not. Grandmaof1 - I checked their website and I could have ordered it directly, in the non prescription strength I could have used 2 a day to equal... [ more ]
grandmaof1 I thought you could order it directly from them. I would look into that. Just a thought. Thanks, [ more ]
Karbear I get mine at CVS. They order it direct from the makers of VSL#3DS. Is there anyway Walgreens can do this until your CVS is built? [ more ]
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J-Pouch ForumsGeneral Discussion
Bidet owners
RM Rowans mom
grandmaof1 I love my bidet!!! But my hubby doesn't. I don't have that brand you are buying. But my simple one is hooked to the toilet seat and my grandson has a seat that sits on top of the toilet seat. He doesn't use the bidet but I don't see why it wouldn't work. I would also call the company. A lot of bidets have moveable parts. Instead I just have to move my whole body to get everywhere I want. But let me tell you, I have it mastered. It is the best thing in the world. I try not to use the... [ more ]
Subzeromambo Call Coco and ask them. I do not like our bidet but they were extremely helpful and took a lot of time to answer my questions. [ more ]
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J-Pouch ForumsK-Pouch Korner
Any NYC Pouchers on here?
vanessavyvanessavy
vanessavy I love a good sense of humor because mine is pretty dark and sarcastic [ more ]
CTBarrister By the ways, Vanessavy, the very first K pouch done in the USA was done by none other than Dr. Irwin Gelernt, mentor to both Dr. Gorfine and Bauer in the 1980s and 1990s. Dr. Gelernt studied under the famed Dr. Nils Koch in Sweden (inventor of K Pouch) and then did the very 1st K Pouch surgery in the USA at Mount Sinai in 1970. Dr. Gelernt, assisted by Dr. Gorfine, did my colectomy in 1992 and my takedown. Unfortunately, Dr. Gelernt passed away in 1996 at age 64. The group later became known... [ more ]
CTBarrister I am/was a patient of Dr. Bauer and Dr. Gorfine's group and I would second the opinion on them. Dr. Gorfine assisted on my two original surgeries in 1992 and also did J Pouch revisions on me in 1998 and 2000. He is a skilled surgeon and also has an interesting sense of humor, once comparing the J Pouch to the British car Jaguar, saying it is like a "really nice car but sometimes needs to spend some time in the shop for maintainence and repair." Their website: ... [ more ]
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J-Pouch ForumsGeneral Discussion
Anti Depressants
N new2thisstuff
merrymommy I was just going to add. Abilify was originally approved for use primarily with a diagnosis of Schizophrenia. It acts as a Dopamine Antagonist I believe.) Dopamine receptor antagonists are used for some diseases such as Schizophrenia, Bipolar disorder, nausea and vomiting. It is classified as an Atypical Antipsychotic and has been associated with some blood sugar issues. Some patients have experienced a condition called DKA which is basically a sharp rise in blood sugar and if not treated in... [ more ]
merrymommy I did use Abilify effectively with Pristiq but after about a year...it became less and less effective. I never had any of the oddball side effects many have with Abilify...ie...the super intense dreams...lol Welbutrin is great because of the lack of sexual side effects...but made me kinda irritable and a cranky camper. lol I do not know for sure if your Dr could use Abilify to "boost" Lexapro. But if its been working therapeutically for awhile...and you are just experiencing some "break thru... [ more ]
new2thisstuff Cataja- which one was the most helpful in your case? Thanks [ more ]
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J-Pouch ForumsPouchitis
Entocort side effects?!?!
pouchmonkeypouchmonkey
CTBarrister I have been taking 9 mg Entocort daily for the last 3 months, together with the usual battery of antibiotics, and I have experienced no side effects, and also no noticeable difference in my condition, as I deteriorated when I went off antibiotics but with a slightly longer onset of the deterioration (9 days rather than 5-6). I am trying to posture for a rotation of antibiotics one week and none the next, while on Entocort. I took Prednisone for nearly 20 years and I had side effects with it... [ more ]
Spooky A common side effect of steroids is swollen feet and ankles. I had this when I was on prednisone, to the point that I had trouble putting on my shoes. Since Entocort is a steroid, I wouldn't be surprised if that's what's causing your symptoms, and the fact that you're not peeing much suggests water retention, which goes hand in hand with the swollen joints. Side effects like this sometimes improve over time, but not always. Anyway, as with any new side effect that pops up, it's worth putting... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
IUD removal, for some relief.. coming up.
KelseyHey2308KelseyHey2308
skn69 Good luck on that then and I hope that it works for you. IUDs can often cause cramping due to the body's desire to expulse them..Sometimes we just reject them for no reason. Please keep us posted on the progress. Sharon [ more ]
KelseyHey2308 Yes I have been taking Progesterone... in a pill called camilla. That's daily, and I think the cyst pain has gone down actually, but the cramping has not. I think I could attribute that to the IUD, we'll see next Tuesday! Yes my periods are the worst, nausea happens the most and the spotting (heavy or light, rarely an actual flow) lasts around ten days. My friend has the same IUD and she doesn't get periods at all, and mine are three times as bad and as long as they once were, I'm really... [ more ]
skn69 Kelsey, You could very well be right that the IUD removal will help you quite a bit if it is causing inflamation in the region...but the polycystic ovary is probably a major cause of pain too (and nausea due to hormone imbalances that it can cause)...in your case (young, single and not yet ready to have kids) they could put you on a run of a few months of progesterone...they use it here for polycystic ovaries...6-18months strait through...stops the periods and allows the cysts to shrink down... [ more ]
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J-Pouch ForumsGeneral Discussion
Adult Diapers
runner4449runner4449
CeeeeCeeee So much easier to "strip" a waterproof pad from the bed and replace it with a dry one in the middle of the night than to have to change all the sheets and the mattress pad! At first I purchased some flannel backfed waterproof material from a fabric store and used it. Just like a baby's crib pad. [ more ]
runner4449 Thank you all for your responses! They help me know what I'm going to buy to have on hand if needed. Definitely going to protect the sheets and mattress to start though. Take good care! [ more ]
Spooky Though I never had leakage issues with the j-pouch, I had a more than a few nighttime leaks with my ileostomy. I bought a mattress pad and slip cover which was inexpensive and protects the mattress. Plus, it was easy just to pull off and throw in the wash as necessary. You can look into something like that if you are concerned. I never used diapers, but I did use Always long pantyliners after my surgery just in case. [ more ]
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J-Pouch ForumsGeneral Discussion
Metamucil clear (inulin) thoughts or experiences?
TheresaSTheresaS
Rowans mom So how is it going now that you have been using it a while? [ more ]
DJ H I just started with the inulin this week (Metamucil Clear) and so far so good. I really like that it just mixes in to something I was drinking already Vs having to make up a special mix with Citrucel or Benefiber. I can't handle the psyllium style Metamucil due to gas from it, so we shall see how it goes with this Metamucil Clear. Is anybody else having luck with it? Thanks. [ more ]
Guest Good? I don't see what's good about leaving your and Kathy Smith's hate attack posts up here? It's nothing but a black eye to this site [ more ]
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J-Pouch ForumsGeneral Discussion
Immune system
RM Randi M
Epic Scotsman From what I know, the colon doesn't have a whole lot to do with proper immune function. The small intestine plays a fairly significant role. If you're off all of the meds (especially biologics and immunosuppressants), then your immune system is going to be in much better shape than it was previously. [ more ]
skn69 Doc says that I am healthier than most of his 'normal' patients...I get sick about every other year and then it comes and goes quickly (but I do take a lot of suppliments). Sharon [ more ]
CTBarrister I never get sick. My immune system is ratched up 5 notches higher than what it needs to be. It still attacks the bacteria in my pouch when it shouldn't. The down side is pouchitis, but I never even get a flu shot as I don't get the flu and if I catch something it gets hammered out of my system pretty quick and I never even miss work because of it. I always thought most of us fall into this category. Biologics ratchet DOWN the immune system from its heightened state so as to stop the response... [ more ]
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J-Pouch ForumsGeneral Discussion
Patency Capsule - How long to go thru?
K kereen
Jan Dollar I've had mushrooms hang around a couple of days without problems, so I don't think there are any fast rules. I think your doc was pretty smart doing he patentcy capsule first. Hadn't even heard of it before, but sure makes sense! Jan [ more ]
kereen The patency capsule is a pre capsule endoscopy test. It's given to people when their doc is worried the camera might get stuck, so it's kind of a "test run." I felt nauseated last night but it cleared up, I assume because capsule began to dissolve. Was just wondering what is the norm for the capsule to hang out in our no-colon GI tracts. 24 hours is probably too long huh? [ more ]
CTBarrister When I was talking to my doctor I was told 6 hours on the capsule endoscopy but this info may be dated. This was in 2008 and at that time the size of the capsule frightened me and I refused the test due to a history of blockages. I hear they are smaller now. Is the patency capsule a capsule with a camera that dissolves? Why are you nauseous if it will dissolve or at least should have dissolved? [ more ]
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J-Pouch ForumsGeneral Discussion
Reporting medical mistakes
C cassiecass
cassiecass For me in NYS I am filing with the State and The Joint commission..Hospitals do not like you to know the Joint commission does respond to complaints. Too many complaints filed with the commission hospitals can not get accrediation. Your state dept of hospitals , your insurance company. You can file with the State licensing dept. You are correct the article does not guide us yet to the right area to complain but the above is a start Cassiecass [ more ]
Connie Where do you send a report now? I don't see any instructions anywhere? I can't imagine how many man hours it would take to screen thousands of complaints or how such an office or agency would function. [ more ]
cassiecass HI It is better to make a report.Keep your records.You never know when they will contact you.Always write down who you talk to date n time.They have to respond.I been told to write my story and send it to President Obama.His office I hear does respond. In a hospital you can ask to have an incident report made and request a copy for your records. We do have a voice.It needs to be heard. Cassiecass [ more ]
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J-Pouch ForumsGeneral Discussion
Dr. Kalady anyone?
Natisha1971Natisha1971
Natisha1971 Sorry to hear you had complications. Thank you for the information. We had that with our oldest daughter who had her first surgery in a different hospital and her pouch never healed so we took her to Cleveland and they fixed her up. At first we blamed the surgeons but we realized that our bodies heal differently and we are made so differently, and it just wasn't meant to be. We are thankful that she is doing pretty good now. Hope you are doing good now too. Thanks again for the info! [ more ]
Pouchomarx I did, he was highly recommended. I had many complications, but not sure if you can blame surgeon? [ more ]
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J-Pouch ForumsHelp! Need advice now!
bloating & some pain
FM Former Member
Former Member Thank you sooo much for your help. Appreciate it. [ more ]
beckysmom How is your husband feeling? It was good to hear he was able to go to the bathroom. He may be sore in his intestines for a few days following this, take it easy with the foods, soups, broth pudding, jello, and stay hydrated. Hope he is feeling better. [ more ]
Former Member his tomache is extended but not much pain. He did go to the bathroom all day. I have been giving him chicken soup for dinner & grape jusice to drink. I just gave himthe heating pad as you suggested. He can not walk, just to the bathroom which is close to him. He is mostly bed ridden. Thanks so much for your help & if you can think of anything else I can do It would be appreciated. [ more ]
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J-Pouch ForumsHelp! Need advice now!
So much gas, with terrible odour!
P pninas
skn69 Sounds like you are learning how your pouch functions on your own...and it is a learning experience...you will figure it out as you go...but most of us know that sugars cause gas and removing them and fruits helps...although I do not reccomend avoiding fruits in your diet unless diabetic or allergic...just moderate and cut down...have fun learning the ropes and try keeping a food journal. Sharon [ more ]
pninas Hi Sharon and Black Diamond - thanks for your replies and ideas. Must admit that I haven't tried the peppermint oil yet - am wondering if peppermint extract would do? I have it in my cupboard for baking! I'm now almost 4 months post-op and am doing pretty well. The bloating has subsided and the gas has subsided somewhat, but hasn't completely gone. I read on this forum about trying Beano and Pepto-Bismol, and have been experimenting with those. I've had success with Pepto-Bismol and have... [ more ]
skn69 How is it going??? Has there been any relief? Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
Please Help!!! Probiotics??
K kjones02
kereen It seems like I have bad gas when I first start probiotics and then it gets a little better as my GI system gets accustomed to them. Sounds like you have a very sensitive system, maybe start with a very small dose and work your way up and see how you tolerate them? Good luck, hope you get feeling better. [ more ]
beckysmom My daughter has tried "align" probiotic and does not have the gas that she has had with vsl #3. [ more ]
kjones02 guess no-one can help me??????????? [ more ]
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J-Pouch ForumsGeneral Discussion
Diarrhea?
Z Zee87
Jan Dollar Unless you are taking things to slow the gut, I would be a bit concerned you have a partial obstruction, unless what you mean by "complete opposite" is that you are not having any problems. If you are feeling constipated, then you need to address it, as your stools should not be firm or too solid without a colon. You could just be one of the lucky ones. Just make sure you are drinking enough fluids to keep things moving and eating enough food. Since you did not have IBD, you are probably... [ more ]
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J-Pouch ForumsGeneral Discussion
One or Two Step, two opinions
D Dutchy
JG I was in remission and had low grade dysplasia just about 1 year ago next week...whew time flies. Anyway, I went for the one step since I was in remission and only doing the surgery for cancer (or to prevent) purposes! I don't regret it at all and felt completely comfortable having it done since my surgeon is very experienced at doing one and two steps. Best of luck to you. I had no issues once I was out of the hospital (14 days for me)...but I had no leaks or infections or anything like that. [ more ]
CTBarrister Dutchy, I had the 2 step procedure and I agree with your reasoning, as well as the reasoning of JPouch 2001. Good luck and let us know how it goes. [ more ]
Blake D. I did a 3 step surgery because my surgeon told me there was a slightly less risk of becoming impotent with a 3 step than a 2 step. The 3 sureries were in a span of 9 months. If I had to do it over, I would've done it in 2 steps to save my body a surgery. Good luck! [ more ]
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J-Pouch ForumsK-Pouch Korner
pregnancy with a k pouch
Rosie128Rosie128
skn69 Thanks Sweetie, I would have loved to adopt...but the Gods of adoption were never with me...a sick single mother was not top of their list for cadidates...I always expected it to happen naturally and every time that I got pregnant I was filled with a soaring hope that this time it would work...it was just not in my destiny but I did love fostering other people's kids and had a blast being the 'fairy God-mother' to every single one of my friends' kids...still am plus I have my step-daughter's... [ more ]
Eric I can't give you advice, but I can give you encouragement! Women are indeed the stronger sex! I can't imagine giving birth, let alone with a K pouch, but I was just googling it, and from what I've read, it is quite possible. @ Sharon, I'm so sorry sweetheart that you miscarried, but as I've learned, some things in life, beyond our control, were just not meant to be, but if it helps, you would make a wonderful mother! For those of you who can't seem to carry to term, ever considered adoption? [ more ]
Rosie128 Thanks everyone for the replies. I was just wondering what my options were. If anyone else has anything to add.....it would be greatly appreciated! Rosie [ more ]
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J-Pouch ForumsGeneral Discussion
Weight gain
Uc-DanielleUc-Danielle
ActiveUC'er I agree with comment above regarding olive oil'ed pastas, nuts, nut butters, etc. In addition, Odwalla makes protein/fruit shakes that are around 300 calories but only 12 ounces. They can generally be found in the refrigerated "health food" section and the ones I've tried so far taste pretty good. There are also "weight gainers" on body building sites. I'm pretty sure they are just high density protein/calorie mixes kind of like normal protein shakes. I can't say how they taste as I've never... [ more ]
Cdub You need to get into the habit of eating, eating a bit more, and then some more! You do get rather fed up of medics telling you to eat "little and often" but they're right. I went into hospital weighing 9 stone, and came out weighing only 6. And ever since my pouch, by weight fluctuates massively in the course of day. I imagine that's because as j-pouchers our output is much more liquid (and we're going more frequently), but I can easily gain/lose up to around 6 pounds in a day and feel just... [ more ]
liz11 Eat 5 meals a day, maybe even 6. I am not saying snack for meals 4,5,6. I am saying eat 5 proper meals a day. So for me, when I was clinically dramatically underweight my doctor had me have a meal at 8AM, 10:30AM, 1PM, 4PM, 7PM, and then in the middle of the night when you get up to use the toilet. Focus on protein with every meal. It must be the main ingredient of every of the 5-6 meals. Ask your doctor about a prescription supplement called Peptamen prebio. It tastes completely disgusting... [ more ]
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J-Pouch ForumsGeneral Discussion
Hair loss- post takedown
Uc-DanielleUc-Danielle
TE Marie LOL Sharon, good catch! My hair is growing back in. I've never had thyroid surgery so believe it is full grown by now. [ more ]
Onwisconsin Oh my! I had no idea this could even happen! I wish you the best of luck- not only have you had to go through so much, but now something you should be able to take for granted is being taken from you. [ more ]
skn69 tough, I hope that you meant that your hair is growing back and not your thyroid!!! Sharon ps...nice to know it is growing in and I honestly believe that you must be beautiful with your natural colour! Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone have a pouchoscopy for functional pouch issues?
J jeane
TE Marie jeane, It is just one thing or another. I am interested in what you find out with the natural path and/or functional medical doctor. I went to both years ago with my UC. I think I could have found a better natural path. She had me put a drop of blood on some kind of paper so she could send it off for analysis - didn't make sense at all so I only saw her 2 times. I went to what I called an alternative MD 2 states away. $2,000 later nothing helped. That was probably 10+ years ago. I'm glad... [ more ]
jeane Toughenough, Funny thing..my cuffitis has improved. No more bleeding and minor irritation at times and no more canasa for the most part. I actually found canasa burned when the cuff was flaring. I am very interested in having the pouchogram done and any other test to rule out any functional/structural issues with my pouch. From there, I may see a natural path doctor or a functional medicine doc as I am looking up some things on the internet that may hopefully help. I am wondering at this... [ more ]
TE Marie When I had my flex pouch scope at Mayo I didn't take any sleep/pain IV medication. The nurses assured me the doctor did colonoscopies like that and has the "touch". He went up 2 feet into my small intestines and examined and took biopsies from above as well as inside. He said it was the best j-pouch he's seen in 5 years. I almost said I bet you say that to all the pouches. He showed me the scaring from where it was constructed and it was just like a regular scar. He said it was a good size... [ more ]
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J-Pouch ForumsK-Pouch Korner
opening to pouch
D dpol
dpol Thanks you, but my problem is not the stoma being too small, it is fine. My problem is that the actual opening to my pouch that the catheter goes through after getting past the valve was too small. That is why I could not intubate for four months and I had to have a tube in all the time. For me, they finally dialated the opening and it works fine for now, they just do not know for how long before it gets too small again. [ more ]
vanessavy Yes this guy makes the plugs. his wife got a BCIR and he started to make them and they go in our kits. They are handy. He makes a 30 french size and a smaller one in case your stoma is shrunk more, for emergencies. I carry one in my kit. I usually tape a pad over it and keep it in over night if I think I need it in but haven't used it in maybe 6 months now. Wayne Jacks MWJacks@aol.com For the binkies/Stoma plugs [ more ]
skn69 I agree with Rosie that prevention is better than the fix...I had a sunk stoma and it closed over repeatedly...it was amazing the speed with which it would heal over and close up...I had to cut it open daily to get the tube in...used a modified pacifier for a while but in may case, being that the stoma had sunk it wasn't enough...the z plasty is not perfect nor much fun to be perfectly honest so if you can avoid it...do. I have silver nitrate sticks that I usually use to cauterize any... [ more ]
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J-Pouch ForumsGeneral Discussion
improvements from month 6 to 1 year mark
N new2thisstuff
Cdub I saw different degrees of progress - it was probably a year until I was able to go through the night without having to get up, but probably in reality three or four years until I stopped leaking a little bit at night. It will get better, though, all the time, in small degrees. [ more ]
Disneynut I thought I wouldn't see any difference after 6 months and I did, a lot. I went from being happy with my pouch to being very happy with it. I still go around 6 times a day, but I am in and out of the bathroom much quicker. I remember kind of obsessing about going all the time and thinking I will always obsess about it and then one day I stopped thinking about it. I really don't know how many times I go a day anymore. I don't have any of the spasms anymore and I am one of the lucky ones who... [ more ]
Epic Scotsman This is another good case for the old adage of "everyone's different." I'm 6 months out right now and I consider anything over 3 or 4 trips to be an off day for me. I very rarely need to get up during the night. Usually the only time I end up using the bathroom at night is if something else wakes me up (like a certain 2 year old). [ more ]
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J-Pouch ForumsGeneral Discussion
Severe Diarrhea
FM Former Member
CTBarrister Lucy, I was going pretty frequently when I had the motility issue post takedown but it was mainly after eating meals and I don't think it was quite 30 times a day. The bathroom trips came in explosive bursts after eating meals. [ more ]
Former Member Thanks! I'll ask my doctor about that ASAP. Although I do tend to go all the time, it's definitely worse after meals. But we're you ever going as frequently as me? [ more ]
CTBarrister Anti-spasmodics are a class of drugs designed to slow down excessive motility of the bowels - examples are bentyl, levsin, and donnatal. They are taken 45 minutes before meals so that your bowels do not have excessive motility. It stops them from churning constantly. Frequently people throw anti-diarrheals at this problem with bad results. If you find you go a lot right after eating it could be a motility issue. I had this problem for about a year after takedown and then it chilled out. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Reversal Surgery - creams and burning
Z Zee87
mgmt10 I happen to like Calmoseptine ointment. It has menthol in it for a cooling feeling. Walgreens carries it in the isle that the Depends are in and you can also get it on Amazon.com. You can click on the Calmoseptine tab at the top of this page for info. [ more ]
Zee87 Thank you for your advice, beucfree, Lew and jeane. I'll look into those products and see what works with me! I'm just hoping that my skin will eventually get used to my frequemt bathroom visits! [ more ]
jeane Zee87, AS Lew indicated, vaseline is very soothing with no burn like some of the other creams cause. I also used cocoa butter on many occasions. [ more ]
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J-Pouch ForumsGeneral Discussion
4.5 weeks post takedown update
U 1970UC
Onwisconsin very similar condition that I'm in nearly 2 months. Though I feel like I've improved a bit over the last few weeks. I was 8-12 at one month. Now I'm 6-10. Night-time hasnt improved too much though. was 4 at one month, now its 3-4. There is still the demoralizing day every so often that just doesn't go my way. Today was one of those days. I went to eat with my in-laws and they chose Famous Daves- a BBQ restaurant. Feel crappy when you can't get anything BBQ at a BBQ restaurant because it... [ more ]
Blake D. Hey Mark, You pretty much described what I'm going through at this point also. I think we had our takedown around the exact same time if I remember correctly. The gas pains where you have to clench your b-hole closed for 10-15 seconds, I know exactly what you're talking about. Those are the worst part of this J Pouch for me. They have much improved since week 1 and 2 though, so hopefully that will continue to get better. My sleep has been awful. I blame myself for part of this though. I'm... [ more ]
Jeff P. I'm about 8 weeks out and you did a very good job describing my symptoms, so if it helps, you're in good company. I suspect that any irritation comes from seepage - sounds better than leakage. Wipes and barrier cream seem to help. Also an occasional bath. Not getting a full night of sleep is the worst. I'm up at night too and feel tired because of it. Good luck on your recovery. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchoscopy 9/18
SpookySpooky
TE Marie I don't see why we should be scoped more often than we had colonoscopies. When I had problems, UC & diverticulitis, the scopes were more frequent. So I would think if all is ok we can go a few years with our pouches. I've had 3 this year so am planning on one next year because I've had problems. I know the Cleveland Clinic and the doctors are great but they are not the only word on the subject. I believe those of us that go to the Mayo Clinics and to other prominent surgeons and GIs are... [ more ]
Spooky Yes, I'm now being seen at Mt. Sinai. I am aware of the Shenite teaching, and I have discussed the frequency of scopes and my concern about cancer risk with both my GI at Mt. Sinai and my surgeon at North York General, and I will continue to ask on my follow up visits. I personally have no issue with having a scope every year, but so far I haven't seen a doctor who would be willing to do them that often; they just don't think it's necessary and in fact, have advised against it. So I can only... [ more ]
_Jeffrey_ Even though I had dyslplasia in my colon before it was removed I was told I only needed to be scoped every 3-5 years. Spooky I presume you are being seen at Mt. Sinai? [ more ]
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J-Pouch ForumsHelp! Need advice now!
need help ..advice
M meghspd
TE Marie If she is a poster on here you can private message her. Look up here profile and below it select the option to send her a private message. After you send the message it will go to her private email. Many people don't check her very often. Good Luck! [ more ]
meghspd Thanks a lot for your input toughenough I have scheduled an appointment with my c/r surgeon. Will see what he will say. Seems like Adiana is also similar procedure and is pretty new but doesnt have any metail coils so the risk of perforation is less. But I am not finding any information on which RE or OB/GYN does that procedure. I have also scheduled an appoinment with my OB/GYN to discuss mini laparotomy and risk of hurting the bowel. I am trying to contact Arabella who had done essure but... [ more ]
TE Marie If I were you I'd get an appointment with your C/R surgeon as he/she should be consulted about this surgery as well. Sometimes OBGYN's and C/R surgeons both are in the operating room for difficult female surgeries. I think you are right to ask about this now. There is a woman's topics place on here too. You might want to post there too. [ more ]
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J-Pouch ForumsGeneral Discussion
Fevers go with what problem (s)
TE MarieTE Marie
Spooky While I was hospitalized during my severe UC flare, I spiked daily fevers (38-39 Celsius, which is about 100-102). I got my IV steriods in the morning, and the fevers would come on late afternoon and continue more or less until the next dose of steriods, when they would go down. I could reduce them with Tylenol in between steroid doses, but they never entirely went away. It was only when the colon came out that I stopped getting them. For me it was definitely indicative of severe... [ more ]
TE Marie Thank Jan, I am as it reminds me all the time I'm not pain free but am doing better since the C-Diff is gone and cuffitis is under control. I'm only taking half of the pain medication I was. Of course then the headaches rolled in..... [ more ]
Jan Dollar Unfortunately, negative labs can be misleading. Keep a close watch on that pain. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Bleeding with a j-pouch
B Brittnicole528
TE Marie If you have UC I'd suspect cuffitis and a GI or surgeon could diagnose this with a physical exam. I also have stinging inside when it's active. I'm sorry about your joint pain. Take Care [ more ]
Brittnicole528 To clarify the blood is a deep red tint and I don't have any stomached pains just in my joints thanks for the info [ more ]
mgmt10 Have you been seeing blood for a while? Your fatigue may indicate that you are anemic. Hope you get some answers at your appt. [ more ]
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J-Pouch ForumsGeneral Discussion
Butt Burn: What Works for Me at 1 Month Post Takedown
FM Former Member
Lew Questionman My wife suggested the vaseline to me several years ago and now it's all I ever use as it seems to do the job. Pretty cheap solution for what can be a miserable issue! Lew [ more ]
Former Member I think I will continue this posting with another update. I saw a Stanford dermotologist for my butt burn and had her do an exam. Her recommendation was to use only Vasoline or Aquaphore, and not things like Nystatin or powders like Gold Bond. She said, "Keep it simple, clean and dry and use LOTS of Vaseline or Aquaphore." What I can say is, despite diarrhea outbreaks because I either am not taking precautions--like a pre-emptive dose of immodium or not monitoring closely what I eat--I am... [ more ]
Former Member I want to give an update and say that a few things that my surgeon recommended have made my life incredibly better in just two days. First, she ordered lomotil for me, and I am taking that 4x a day, which has dramatically slowed down the number of bowel movements. She also prescribed a mixture of three ointmenst that I am now using that are already clearing up my skin irritation at the anal opening: lidocaine, nystatin (both prescriptions) and the over the counter desitin. I also am using... [ more ]
See all 8 replies...
J-Pouch ForumsPouchitis
Humira long-term side effects?
pouchmonkeypouchmonkey
jeane Jan, Thank you for the post regarding biologics. Pouchmonkey, please report your results to us if you prefer. I am in the same situation you are with 16 months of chronic pouchitis that is held pretty much at bay when on augmentin. If I miss even one dose I rapidly decline. I am meeting with my colorectal surgeon early next month to discuss options I agree with you in that I had the surgery to get off meds. I too am fearful about biologics so I appreciate the information shared in this post. [ more ]
Jan Dollar Actually, the safety profile of Humira is better than Remicade. That is because it is a fully humanized antibody (Remicade is based on mouse protein), and is given by subcutaneous injection, as opposed to IV infusion (Remicade), so far less likely to induce an allergic reaction. The main risk is for infection, particularly reactivation of latent infections, like TB, herpes, or hepatitis. But, if you use common sense, you should be fine. The other risk most people freak out about was the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchoscopy results--cuffitis!
John95John95
kk I have found that I get a different answer for the same problem from different doctors. I didn't have pouchitis until after 10yrs. the ulcers have always been in the same area(part I was told left to connect) so mostly given suppositories to get meds. where it needs to be. Asked one doctor (surgeon) location of ulcer calling it pouchitis and he didn't tell me only answered by saying not signifcant of location. Two yrs. ago gastro told me where and called it cuffitis. I don't know but I am... [ more ]
jeane Yes... I get cuffitis at times without bleeding. I also have joint and muscle pain snd was suspicious this was from long term antibiotic usage as I never had it before jpouch surgery and have been on augmentin for over a year. My surgeons nurse refutes this. They tell me it is from the underlying pouchitis but I am skeptical. [ more ]
liz11 Yes you can have cuffitis without bleeding. I suspect canasa suppositories might be ok as they are local and shouldnt have systemic effects. But you need to ask your doc. [ more ]
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J-Pouch ForumsGeneral Discussion
rectal cuff cancer
L lively752
Former Member ❤️
TE Marie It is never good to have a blockage but fortunately they discovered the clot before it could reek much havoc. [ more ]
lively752 Take down surgery went well. Was released after 3 days. Was doing fine for 1 week, then developed a blockage and went to hospital. It cleared after 3 days. The scan they performed while there, also revealed a clot in the portal vein to the liver. They say it occurs at least 20% of the time with this type of surgery. Have to be on coumadin for 3 months as a precaution until that resolves. I, got out this past Sunday. Luckily no surgical intervention. They seem to think it was caused by... [ more ]
See all 17 replies...
J-Pouch ForumsK-Pouch Korner
Urinary urgency
EricEric
vanessavy I have IC so my my bladder is always a mess. If my pouch is full of liquid my bladder spasms and can't hold it. I pee a lot though and often. I consulted with my surgeon about repositioning my pouch so it takes pressure off the bladder since IC makes it a double whammy and pure living hell every day. I can move it but I just can't do surgery again. [ more ]
skn69 Yup, I have a low pouch that is back to back with my bladder so one functions with the other and I get this weird thing going that I have to pee but can't until I release some of the pressure on the pouch but can't empty the pouch until I pee...kinda difficult but I manage...but definetly one pushes up against the other and causes pressure on each.. Welcome to the wild and wacky world of k pouches! Sharon [ more ]
Adroen Hey Eric, I find even with the disconnected Jpouch I've been having problems with that. /shrug Not sure what part is causing the issue, but it started when the pouch got made...that's for sure. Sometimes I feel the problem might be around where the prostrate might sit(at least I think it's where it sits lol) if you know what I mean and it's creating the problem? If you find out what's the cause for you, be sure to post back on it please. Ad [ more ]
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J-Pouch ForumsHelp! Need advice now!
Does Tindamax cause nausea like Flagyl?
John95John95
liz11 jon also try to call the tindamax manufacturer directly yourself. Sometimes the drug manufacturers have patient assistance programs. At least they should be able to give you enough for a month to see if it works. [ more ]
John95 Thanks, NancyAnn, and Liz, for your replies. Cipro gives me terrible joint pains everywhere as well. You've helped me work up the courage to try Tindamax, but I just called the pharmacy and asked how much it will cost, and they told me $290 for 28 pills. I don't have prescription coverage. I'm asking my doctor if there's anything cheaper I can try. [ more ]
liz11 Tindamax was the best for me. no side effects at all - unlike cipro and flagyl! I can't eat at all on flagyl. Cipro causes me tremendous joint pains. Tindamax was so fabulous that I forgot I was even taking it. So go for it. Everybody is different so try it and see what happens. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Hoping to catch a break down there
V vstRN
Colleen2001 UGH! I struggled with a Bartholin's cyst for years. As Karbear said, soaking in the bath helps. I used to soak with Epsom's salt every night until it drained. If you do have one, and it doesn't drain on it's own, you will need to go to the GYN and have them do it. You definitely don't want it to cause an abscess. Wish I could offer advice for the fissure, but it's one of the rare maladies that I have not expererienced (thankfully!!) Best of luck! Colleen [ more ]
Karbear I've had both, but not at the same time. If you think you have a Bartholin cyst, you should go see your GYN as soon as possible. Mine abscesses and swelled up to the size of a peach before I went to get it lanced. As for the fissure; sitz baths help a lot (they also will help with the cyst). I have some Nupercainal still and love it for the fissures. They took it off the market for awhile, and I'm not sure if it's back on the market. You may also be able to find something similar to it on... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Crohn's and genetic variants
n/an/a
Jan Dollar I would imagine the study focused on CD because there is more known about the genetic link for CD than UC, meaning, there is more data indicating a stronger genetic risk for CD than UC (twin studies and the like), plus known markers. UC is more nebulous in that regard. Jan [ more ]
n/a Also, my brother wasn't dx'd w/CD until he was in his late 40's, and he has a very serious case of it (from the esophagus on down). He was/is a smoker and tends to drink a little too much, so that didn't help matters, I'm sure. [ more ]
n/a According to this study, age contributes to the risk of IBD. Can't get the chart pasted in, but the number of adults in the U.S. with CD seems to flatten out around the age of 50-59; the number for UC continues to increase through 60-69 years old and older. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Re j-pouch surgery
FM Former Member
Laurie49 Good for you Rocket! I had my 3 step beginning in 1996, my kids were 5 and 8, so I can't speak to the infertility question, but there are so many people on here who have had healthy children after jpouch surgery. Franny, it is imperative you find the best colorectal surgeon. Interview, interview and then interview again. Any good doctor will completely understand (and frankly, who cares if they don't). After suffering with a bad colon (does he have UC?) -- this may be a relief. I'm sorry... [ more ]
Rocket franny19, I had the three step surgery and the 3rd step surgery was completed in April, 1994. By July, my wife became pregnant and today, I have two kids. Rocket [ more ]
darealfoo Being that I'm in between surgeries for the J pouch, I'm probably not as qualified as others to answer, but here's my $0.02 anyways. Impotence/erectile dysfunction, although rare, is a possibility. I think the stats claim that this only happens in less than 1% of men. To be safe, I had my kids stored at a cryobank (but turns out I didn't need to). Although many j-pouchers suffer pouchitis at some point, very, very few suffer chronically. It's usually treated with antibiotics and for the most... [ more ]
See all 3 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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