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J-Pouch ForumsGeneral Discussion
F.A.P . genetics
L LilMoe03
Subsky Every human being has the APC gene, it regulates cell division. Your sons FAP is a result of this gene mutating. FAP and APC mutations are not sexually transmitted diseases. Your husband also cannot change your genetic information with his own through intercourse...your APC gene is safe. [ more ]
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J-Pouch ForumsHelp! Need advice now!
What does a blockage feel like?
dennyp3dennyp3
kcmillwright My blockages are usually around my scars try chugging Gatorade helps me break it up stretching and making myself throw up helps too the pain for me feels like stabbing or stretching in my guts [ more ]
Jpouch8888 My blockages sound similar to what you are feeling. In addition to what you described, typically every few minutes or so I will get a gurlging noise and intense cramp for a brief period of time. Also, your tummy will distend. Sometimes I will wait in the toilet for that intense cramp to come. That is typically a good time to try and use the bathroom. Sometimes works. Good Luck! My advice is to walk, drink lots of fluid (hot tea is good), talk very warm baths, go on liquids. If the pain does... [ more ]
CTBarrister Depends on whether it is a blockage due to a physical obstruction or blockage due to ileus/cessation of peristalsis. Blockages due to physical obstruction have a very distinctive sensation based on my experience having 4 complete blockages and 2 partials that resolved. It is best described as a knotted up feeling in a distinct area which causes pulsating pain every time there is peristalsis of the bowels. In other words it is not constant pain but it increases over time as contents build... [ more ]
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J-Pouch ForumsGeneral Discussion
controlling itis's with medications?
G Guest
Scott F I think VSL #3 DS kept pouchitis at bay for me for a couple of years. I still take it, but now seem to need Cipro as well. For those who may not know, the DS strength is prescription only, and seems to generally be included in prescription drug coverage, though at the highest copay. I've had mixed results getting it covered by mail order, though. [ more ]
CTBarrister I don't know if it is best to "stay off" imodium entirely, but it is best to not take too much, because if you do, it will definitely worsen any existing pouchitis. I happen to be very sensitive to imodium and anything more than 1 2 mg loperamide pill in 12 hours is too much. Only take it if you need it and in very small dosages. Lay off sweets and take probiotics between antibiotic dosages. I have been on antibiotics for 17 years and have kept pouchitis under control for that period of time... [ more ]
Srf1 My UC was controlled for close to 20 years by meds. Prednisone, Asacol, Sodium Balsalazide (colozal) and 6MP. What pushed me to Jpouch surgery was being diagnosed with low grade dysplasia. Even with the medicines keeping symptoms under control, the ongoing inflamation increases your cancer risk and it gets greater with each passing year. I'm 52 years old. You're close to that from reading your posts. So you keep your colon another 10 years and then something like LGD or worse forces you to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
BM's very frequently after surgery
DN D. Nocerino
CeeeeCeeee I didn't keep a diary and so I can't remember when things finally slowed down. I believe it didn't happen overnight, though. I always have used food rather than meds to control consistency and frequency. I have nothing against meds at all but eating certain foods works for me. I think it's easier to aim for a liquidy output than one which is more solid. Best wishes! [ more ]
JessGoguen D, I do take imodium and eat psyllium. I even have it on a schedule so I can keep ahead of things. I began see it thicken up once I increased the imodium. I also find if I take these about a 1/2 hour before meals things moves along better. I also cut some things out of my diet for the time being. It's all trial and error for me. [ more ]
Txgal58 D., my doc had me taking lomotil from the beginning; I am 15 yrs post surgery and still take it daily. I've not been one who can "thicken" BM through diet, the lomotil just slows things down a bit. Sounds like your experience is normal. Your pouch will stretch and learn how to function better over time! I still have "oopsies" every now and then but MUCH better than with the UC! [ more ]
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J-Pouch ForumsGeneral Discussion
scope results 3 months post takedown
G Guest
gleam Woohoo! I am very excited for you Tom! You finally have a diagnosis and can start kicking its butt! I look forward to your future posts. [ more ]
n/a I always look at it like this: if I still had my colon, imagine how sick I'd feel with this inflammation throughout the whole colon, rather than just a cm. or 2. Well, no need to imagine - 20+ years later I can still remember. So, glad the colon is gone. Not that there was a choice ... I keep cuffitis under control with 3 canasas per week. I've also used hydrocortisone suppositories per Dr. Shen when the canasa just didn't do the job. In my experience, the HC suppositories did "thicken"... [ more ]
Rebe0505 most drs do not do mucosectomes anymore because they find they get better results hooking up with a cuff..and because cuffitis and pouchitis for that matter or other difficulties only effects about 10 to 15 per cent of jpouch patients.. [ more ]
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J-Pouch ForumsGeneral Discussion
doctor called
G Guest
Guest also, if you have chronic antibiotic dependent pouchitis what is shens protocol for you and is there a point to probiotics and boulardii for you? finally, do i have to start avoiding certain foods before ive even had a chance to enjoy them? i just wanted to be as carefree about my digestive system as my surgeons eluded to prior to surgery... could being dxd with pouchitis and cuffitis end up being acute still 3 months out? the word chronic really does something to my psyche... [ more ]
Guest what can one do to avoid antibiotic dependent pouchitis? i had c-diff years ago. any way to avoid that as well? [ more ]
Guest what can one do to avoid antibiotic dependent pouchitis? i had c-diff years ago. any way to avoid that as well? [ more ]
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J-Pouch ForumsPouchitis
Pouchitis ,on Cipro for 13 years, now allergic to Cipro, now what.?
S sandyc
Rebe0505 aloe vera is a new one for me or this site i think..never heard anything about it for pouchitis..please keep us on site updated.. rebe [ more ]
Former Member Sandy About 8 months ago, my GI guy gave me the option of going on a bag or Humira (not sure if that is spelled right) anyway, it was not covered by my insurance ($1000+) per injection. Didn't like my choices. Searched around the net and came up with some testimonials for aloe vera. Since it doesn't taste good, I opted for aloe vera gel caps. I started by taking 3 caps per day. I am now down to 1 cap per day, along with a pro biotic (Samsclub generic for Align)and 4 Lomotil 2.5 mg ea. per... [ more ]
Rebe0505 i take,culturelle,align and s.boudarii..even as i am on antibiotics as well..can not hurt..i try to take them about two hours apart since i am always on antibiotics.. on xifaxin now trying to get by on 2 two times a day instead of 2 three times a day.. rebe [ more ]
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J-Pouch ForumsHelp! Need advice now!
Constipation, why so?
GW Guy with j pouch
Solomin There could be many reasons why you have constipation. It could be related to diet. You could be suffering from pouch disfunction. I am in the same boat as you ; I had a defacography, where they insert barium through the anus and watch how you go to the toilet (empty). Another test was CT enterography. I also has a barium test where I drank the stuff. By having the tests above done, it was determined that my pouch is not in a correct shape, and that the constipation is due to its shape. Ask... [ more ]
Guy with j pouch Did all kind of checks, including MRI, scope and Manometry. The only thing they found is I have fissure, which is caused by constipation. No stricture. My question is why I get constipation at the first place? I thought all j pouchers always have watery stool.... Right now, in order to empty the pouch, I use an anal cathether and irrigate the stuff out... Just wondering what caused the consptation... Thanks. J Guy [ more ]
SM Maybe talk to the doc. My son had the same thing--watery to hard to expel. His pouch has changed shape and narrowed. [ more ]
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J-Pouch ForumsK-Pouch Korner
Water tempture for irrigating
GW Guy with j pouch
Guy with j pouch Sharon, Thank you very much, The advice you offered is very valuable for me. J Guy. [ more ]
skn69 Guy, It doesn't really matter that much...I aim for room temp but whatever comes out of the tap is fine for me...(I have had to use freezing lake water and hot tap water but I would try to avoid extremes)...as for the quantity...I use a 60cc syringe but sometimes I need to irrigate up to 5-10xs during one go because things have thickened up too much in there...no rule...If things are liquidy and pour right out I don't need to at all...it all depends on what you ate, what you drank and what... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Breastfeeding after surgery
G Gom
clz81 Gom, It's great that you want to try to continue nursing after surgery, but it can be a pretty rough recovery. Just wanted to prepare you for some things. I didn't want to eat or drink for about a week since I was so nauseous after the surgery. I was on an IV so it was keeping me hydrated, but I felt so crummy in the hosptial that I couldn't even fathom nursing. I have a lot of experience with keeping up my breast milk while pumping/dumping with both my kids. With my first, I did it for... [ more ]
Twinstar Gom, yes the answers do vary for each individual situation... but there are many medications that are safe for breastfeeding. I was on pain meds, zofran and reglan after the first surgery. All were okay for breastfeeding. I did pump as soon as I could after the surgery and I can't remember if I dumped it or kept it. Either way my lactation consultant and anesthesiologist both felt that as soon as I was awake enough to pump the medications would be out of my system and it would be safe to use... [ more ]
Gom Thanks Jill and Twinstar, Twinstar: You said you were able to pump your milk after the surgery in the hospital room. To Jill's point, weren't you on any medication at that time? Is that breastmilk safe for the baby. I guess answers to these questions varies on a case by case basis. [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown Progress
bootstrapbootstrap
KiwiPoucher I agree Tincan.....I don't think I have ever experienced such relief as when they first suctioned out through the NG tube. Trouble is, that was immediately followed by the throat pain and gagging. [ more ]
TinCan I'm probably the only person on this list who actually semi-liked the NG tube experience (especially once I understood the procedure and why it was necessary). It provided immeasurable relief. Anywho, getting it out is definitely a turning point. Time to normalize. Best wishes and jingle bells! [ more ]
kathy smith Looks like you'll be home for Christmas! Yay!!! kathy [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abscess?
AyrishGrlAyrishGrl
AyrishGrl A couple days later and I'm still improving. Pain is reduced more every day. I finally tried some Preperation H wipes for the itching and they helped a little bit. When the major itching spells hit though there was nothing I could do but writhe and cry until they passed. My only saving was taking my Percocet every 4 hours and sleeping most of the time. I will take pain over that any day of the week! I am still draining from the biopsys but it is getting less. I switched to the Vicodin today... [ more ]
AyrishGrl I am taking 1 Benadryl with my pain meds since Percocet makes me itchy in general but the anal itching is an entirely new torture. At times it actually has me squirming in an agony of itching sensations. I wish I had thought to ask my surgeon yesterday for something when he called to check on me but it wasn't real bad at that point. We have some Calmoseptine but I don't know if that would help or if it would be a good idea. [ more ]
Jan Dollar Some people like Epsom salts, but I don't know if that would reduce itching. Does she have any topical anesthetic like lidocaine? Oral antihistamines might help, Benadryl. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
feeling tortured
G Guest
kathy smith Then it's not likely a fissure. kathy [ more ]
Guest but i have no stinging itching or burning and no pain during a bm. only what feels like a deep ache progressing throughout the day at the anus/rectum area that resembles a broken bone ache or a toothache. that doesnt sound like a fissure does it? all i know is im coming up on a week on the hc suppositories for my cuffitis and i feel no different than before i started. added a tiny amount of lean ground turkey yesterday and passed pure acid over my healing hemorrhoid only to have it start... [ more ]
Guest but i have no stinging itching or burning and no pain during a bm. only what feels like a deep ache progressing throughout the day at the anus/rectum area that resembles a broken bone ache or a toothache. that doesnt sound like a fissure does it? all i know is im coming up on a week on the hc suppositories for my cuffitis and i feel no different than before i started. added a tiny amount of lean ground turkey yesterday and passed pure acid over my healing hemorrhoid only to have it start... [ more ]
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J-Pouch ForumsGeneral Discussion
Who is this Dr. Dasilva character?
G gleam
Guest didnt find any posts about her at healingwell either. would love to see them if possible... [ more ]
gleam I don't mean anything negative about her. I just wondered who she was. I've seen her name brought up a few times. Perhaps it was on the healingwell forums. Good to know there are awesome surgeons out there to fix us all up! [ more ]
Guest its a she and she works with doctor wexner. she did my surgeries. i think there are about 5 j-pouch surgeons there. i cant find any posts on here about her except the one i posted. what gave you the impression shes a character? Doctors ***Steven D. Wexner, MD Chief Academic Officer Chair, Department of Colorectal Surgery ***Juan J. Nogueras, MD Chief of Staff ***Eric G. Weiss, MD Vice Chair, Department of Colorectal Surgery Head, Section of Surgical Endoscopy ***David Maron, MD Colorectal... [ more ]
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J-Pouch ForumsGeneral Discussion
Merry Christmas.....and Happy Holidays
MH mad hatter
Rebe0505 ct there are folks who have uc and take something that keeps it in remission..i know a few..actually its my understanding that 30 per cent of uc suffers need the operation..we just fall into that group!and here is another statistic..of that group only about 15 percent go on to have additional issues like pouchitis..i am not sure exactly of the pertenage that have to lose the pouch but i think it is smaller still.. but it can be worse..i am grateful i found something to control and give me a... [ more ]
CTBarrister He is in his mid 50s and has had UC for 35 years. I have never heard of anyone having UC that long and keeping their colon. He is on 6MP and seems to be doing very well with it. From what I can see he looks, eats, and acts like he is healthy. We have been good friends since graduating law school together in 1991. [ more ]
RLC Merry Christmas to all, Happy Chanukah and Happy New Year! Roberta [ more ]
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J-Pouch ForumsGeneral Discussion
Gas
G gleam
Guest http://www.nodoz.com/index.shtml [ more ]
gleam Hmm, no carbonation in redbull ehh? Good to know, good to know! Thanks Scott. [ more ]
Scott F I'm not a big fan of energy drinks, but I'd choose them over gas any day. I never thought I'd recommend someone give Red Bull a try. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Maybe crohn's????
B beckysmom
beckysmom Hi. And thank you for asking! I sent you a pm. More testing. Thank you again. [ more ]
LionsPride How is she doing Susan? [ more ]
beckysmom Thanks CT. We are hoping for the best. After 9+ years, she has never tested positve for crohns either and has never shown inflammation anywhere else till now. The problem lies not with the diagnosis title, but the treatment.....my daughter had life threatening pcp pneumonia when she was 10 and on immunosuppresant meds. Therefore, she had to have surgey rather than risk it again with remicade, etc. IF she has crohns, I don't know how it could be treated since no one has ever wanted to try her... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help with Kaiser ASAP
Lynne2Lynne2
Lynne2 Liz and Jan, You bring up excellent points that are rooted in real experience and knowledge. Your posts are so helpful to me and I will include your ideas as I prepare my notes for meeting with a more experienced surgeon next month. If I learn anything new to add to the conversation,I'll post when I get back. I'm grateful for your help and am wishing you very happy holidays. [ more ]
liz11 Lynn. so sorry for all the difficulties in your decisionmaking. Are they sure you have crohns? From what I understand.. in the simplest sense, is that if a jpoucher has crohns and then the jpouch is removed... if crohns wants to keep attacking then it only has the bottom of the small intestine and onward and upwards. That can become dangerous. Dr. Shen said that they worry very much once a jpouch is removed if they find crohns.. because those cases become difficult and potentially very... [ more ]
Jan Dollar I think I can address your question. Sure, the goal is to preserve as much small bowel as possible, even if it is not fully functional, and here are the reasons: Surgery does not cure Crohn's and most Crohn's patients eventually need surgery, often multiple times in their lives. There is a limit to how much small bowel can be removed before health, and even life is threatened. So, the younger you are, the more of an issue this is. In addition, there is a tendency for Crohn's to recur after... [ more ]
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J-Pouch ForumsGeneral Discussion
medical marijuana
J JoelSmith
Sonja6 nikki, northern cross collective. Do you have your card yet? if not they could point you in the right direction. I usually go to 4ever green in seattle to renew mine. But there alot of local docs that could help you out. [ more ]
nikiki Thanks Sonja6. Do you have the name of the dispensary in B'ham? It's well worth the try. [ more ]
Sonja6 Nikki, I can defintly see how they think a tincture of opium may help. I self medicated on herion for years before my first surgery. Its a horrible thing. I am fully aware. But I did what I had to do to keep myself alive. I know that sounds silly to say herion kept me alive. But the pain meds just were doing anything anymore. I couldnt leave my bathroom for months. And my first surgery to remove my whole large and put in a j-pouch was a emergency surgery. I have been clean of all that... [ more ]
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J-Pouch ForumsGeneral Discussion
Need to gain weight
S SandrineV
LC Can you eat dairy? I avoided milk (I still do plain) but I love cheese and yogurt. I eat full fat plain yogurt with maple syrup and it keeps my pouch very happy because it is filling, has probiotics, and helps slow down my intestines. Thinking back on it, plain yogurt was the first thing I was able to eat without getting sick after my pouch was hooked up. I also eat cheese as a snack before bed because it keeps me full without making me have to go to the bathroom in the middle of the night. [ more ]
Randi M It will happen. I never thought I would gain the weight back but I did. I was drinking ensure plus every day. Once I started eating almost everything around 6-8 weeks post takedown the weight started to come. Im now 6 months post takedown and I've gained over 20 pounds and can't seem to give up the nightly Ben and Jerry's. My New Years resolution is to eat healthy and maybe lose a few. (LOL) lucky for me so far my pouch let's me eat everything in sight without a problem. I was at 88lbs at my... [ more ]
Laurie K I was so sick from complications, that I too lost sooo much weight. I was 89 pounds and they were threatening me with being put back in the hospital. I LIVED on ensure. Problem is..I don't think my ostomy liked it. LOTS of fat and too much of it caused tons of gas. As things settle (and you take imodium, fiber,etc.) things will slow down and you'll gain it back. Took me a good 4 months or more. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Seeds?
runner4449runner4449
runner4449 Thank you all! I knew whether it was good or bad I could count on you for feedback. I must say since I had the crackers in soup, and the soup made them mushy, I know I didn't chew very well. I've eaten nuts without trouble because I'm sure to chew carefully. In fact, I normally do chew thoroughly, but didn't with the soup and crackers. I've been pretty amazed at all I've been able to eat lately to include things like salad and raw veggies. It's a relief to know if something gets through... [ more ]
CTBarrister I have lots of foods that sometimes come through undigested and it does not stop me from eating them. Whenever I eat a large salad it comes through partially digested even if I chew it well. All you can do is chew it well, and if you see whole seeds perhaps you need to do a better job chewing. But it is not going to harm you, you just are going to get less nutrition out of these kinds of foods unless you chew hell out of them. BTW I recently tried Sunbutter which is Sunflower seed butter... [ more ]
kathy smith Yes, eat it all - by all means... And those seeds go right through the coloned too but because they usually have a much more solid stool it's not as visible. I can consume huge bags of sunflower seeds, popcorn, and all those supposedly 'bad' foods. There are no bad foods unless YOU say they're bad - like zucchini. Yuck. But that's because it's a mushy tasteless vegetable. Eat on. kathy [ more ]
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J-Pouch ForumsHelp! Need advice now!
Seeds, nuts and dried fruit!
K KiwiPoucher
Scott F There are some meds that have off-label uses with different dosing trade-offs, so they may be mindfully and reasonably exceeding the labeled max dose. OTOH it sure sounds like it's not very effective for you. [ more ]
KiwiPoucher Thanks for that Scott. Have googled it and you are right. Both my Surgeon and Gastroenterologist said there is no upper limit and in hospital I was taking 28 some days. Think I will write to my Gastro and query it again. [ more ]
Scott F I'd advise against taking 20 loperamide in one day. The maximum safe dose in 24 hours is 16 mg (8 tablets). If it's not working for you, perhaps a different medication would be worth trying. [ more ]
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J-Pouch ForumsGeneral Discussion
grapefruit and drugs
kathy smithkathy smith
Scott F I stand corrected. Thanks for catching that, Jan. [ more ]
ISeeUC Grapefruit? Blech! [ more ]
Jan Dollar Unfortunately, it actually is not true that this interaction only occurs when the juice is consumed at the same time as the drug. The effect of blocking the enzyme can last for more than a day. But, the effect is not the same universally, so itdepends on the drug, the dose, and the amount of grapefruit consumed. So, something to be worked out with your pharmacist or doctor. If you have grapefruit daily, perhaps you can get by with a lower dose. [ more ]
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J-Pouch ForumsGeneral Discussion
3rd day on hc suppositories for cuffitis.
G Guest
Jan Dollar Probably, but it could just be subduing symptoms without actuallytaking care of it. One step at a time. Right now, HC suppositories... Merry Christmas Tom! Jan [ more ]
Guest if cipro does ultimately calm it does that mean im on the way to healing or is it not that simple? also, can my current surgeon tell me from the sig he did last week if my old surgeon did a good job on the size of the rectal cuff left behind? [ more ]
Guest if cipro does ultimately calm it does that mean im on the way to healing or is it not that simple? also, can my current surgeon tell me from the sig he did last week if my old surgeon did a good job on the size of the rectal cuff left behind? [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Creation in 3 weeks, Questions...
M mom2panda
JessGoguen Hi, Although I am not a veteran of the jpouch I am using mine and pretty well, at least I think so. I had a two part surgery w/ 3 months in between. I found the recovery after the first to be rather difficult and my bag and I battled constantly through the whole thing. I am 2 1/2 weeks post takedown and pretty happy with the results. The first week was tough and I dealt with butt burn, being tired and feeling unsure when I left the house but now I am comfortable. I was able to go into work a... [ more ]
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J-Pouch ForumsGeneral Discussion
in need of some help please!
K kecknickn
chal You did not say how long you have had your pouch. After I had mine for about 4 years, I started having pain and nausea on my left side. My concern was scar tissue. Scar tissues does not show up on any scans. After some tests, my GI doctor determined that I had some gallstones, but that they were not of a size or location that should be bothering me. He reluctantly sent me to a general surgeon to remove the gallstones and look for scar tissue. Low and behold there was scar tissue. He removed... [ more ]
skn69 Nick, So sorry that you are living through this nightmare...On my list would be a kink, a twist, a stricture, diverticulitis (can it occure in the small intestine?), a hernia and or a kidney problem....not that I wish any of the above on you....but those are what comes to mind. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
please help us rookies with technique on the thrown
G Guest
chal After my surgeries, I was told to hold it as long as I could in order to stretch the pouch. But if I'm away from home, I don't do that. I just sit in normal position to empty. I know I'm done when I pass gas. How much I push varies depending on the thickness of the stool. I do not think it is good for the pouch to strain, so I do not take a lot of stuff for thickening. I prefer looser stools over straining and my stools per day are average (got my pouch in '04). I stay on toilet until I pass... [ more ]
Rocket I try to hold it in as much as I can and I have been post takedown since 1994. I try to realase as much as I can but not to force it out because that cretes more problems with my butt that stings. Only a little gas comes out and I feel I have so much more. The only way to get the gas out for me is I have to bend over so my cheeks are completely off the toilet and then much more gas will pass out. Not a little more, but much more. The only problem with this method is it creates a big mess on... [ more ]
Sonja6 Its been 8 years since my takedown and still when I gotta go I gotta go. It doesnt care where I'm at. But I do usually do try to go before I go anywhere. And I avoid situations where i wouldnt be comfortable using the bathroom. I mostly hate when you go to someones house for the first time. And there like " oh ya, our bathroom is right there off the kitchen"!! Thats the worst. [ more ]
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J-Pouch ForumsGeneral Discussion
Final Surgery for J pouch
D Dew33
Laurie K Congrats! You will NOT regret it a bit. I DOES take some time, as you know. For me...a bit longer. Even with that (pouchitis,complications,etc.) it was well worth it. Going on 6 years for me now. I'm more active than ever and living life to it's fullest. I wish you the same. Just know that it will take some time for your body to adjust. My top recommendation...get a bidet seat. I know it sounds weird, but it saved my life and well worth the investment. [ more ]
TE Marie Congratulations! I hope everything wakes up and you can go home soon! [ more ]
Scott F Speedy recovery, Dew. When I got my pouch I figured I'd call it successful if I could just have two years of not being sick and not wearing a bag. That was ten years ago. I have never regretted the decision. My worst day with pouchitis is better than any day before the surgery. [ more ]
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J-Pouch ForumsK-Pouch Korner
End plug for catheter...
J Jasmine 2
Jasmine 2 Patricia very good idea, no I never thought of a wall plug. [ more ]
skn69 Interesting thought Patricia, Unfortunately for us here in France they are not solid but full of holes...will have to check them out when back in the States! I use the protective tips that come with the syringes over the catheter tips...perfect size too and I always have fresh ones whenever I open a new syringe. Sharon [ more ]
Patricia Walker Has anyone tried wall plugs? Perfect fit, cheap, easy to wash. Always have them with my catheters and they literally act as a plug for catheters as they would for screws. [ more ]
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J-Pouch ForumsGeneral Discussion
pouchitis
M mgiamartino
mgiamartino yes, thanks. didn't realize until after i posted that there's an entire separate section for pouchitis... [ more ]
Scott F Cipro is what works for me. In addition to cramping, I experience what seems like a very sensitive pouch - a small(er) quantity of content creates an urge to go. BTW, you may want to explore the "Pouchitis" forum instead of the "General Discussion" forum. [ more ]
mgiamartino thank you karbear--i'll do that. [ more ]
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J-Pouch ForumsGeneral Discussion
cuffitis hc suppositories and gravity?
G Guest
TE Marie I need to lay down when I use Canasa or any suppository, in order to keep it inside long enough for it to do any good. I use it at night when I'm as sure as I can be that my pouch is empty. When I stand up gravity does take over and I need to head to the bathroom. [ more ]
Karbear I didn't notice much of a difference depending on body position while on the suppositories. For me it was more about being able to hold the medication in for 4 hours without going to the bathroom. I found 2 hours before bed just after the bathroom trips following dinner was best for me. I would recommend finding the time of the day you frequent the bathroom the least and taking the medicine at the very beginning of that time for the best absorbtion. [ more ]
jeane It does not really seem to make a major difference to me, but I do think standing up helps the medicine spread out possibly more and drop to the lower anal area. That is just my opinion. I have been taking these on and off with canasa forever and my cuffitis is still pretty active. I wish I had a better answer for those of us suffering with this chronic, debilitating condition. I have recently started oral pentasa to see if this gives me the little extra boost I need to try and get my... [ more ]
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J-Pouch ForumsGeneral Discussion
Doctor
ManchesterManchester
Jan Dollar Other topicals for fissures are nitroglycerine or nifedipine (causes less headache than the nitro). But I would have thought you would have used these before resorting to a seton. Nother option is B&O suppositories (belladonna and opium). Potent, yes, but they act locally. Jan [ more ]
Manchester Jan I have emailed my IBD nurse at the hospital to seek advice regarding creams and lotions as the doctor seemed clueless. I will ask about the meds you mentioned. Thank you [ more ]
Jan Dollar I think you are right. Systemic opiates don't address that sort of pain. Do you have topical anesthetics, like lidocaine? That can treat the fissure too. Even a sensory nerve block would make more sense than just throwing pain pills at it. Jan [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
reversal incision wound healed up too fast?
stephalynndstephalynnd
Sonja6 I would just say thats a good sign Mine healed super fast to. [ more ]
Jan Dollar As long as you are not having symptoms of increasing pain, pressure, fever and the like, all is good! Some people just heal faster than others. I think we get used to things going sideways and are shocked when something goes right! Count your blessings, but be alert just the same. Jan [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Should I get my pouch removed and butt sewn up?
FM Former Member
Jan Dollar I agree with the above. As long as you are doing well, I would not mess with pouch removal. But, you should still have periodic scopes to make sure nothing is brewing. Jan [ more ]
JillM If you have no signs of cancer now, and if you are able to function and be healthy with the disconnected pouch, you should pursue your family before considering removing the pouch. It is a big surgery and one that will bring on a risk of adhesions, and therefore a risk of fertility problems. Have your family, then determine if the pouch needs to come out for long term health issues. I had a disconnected pouch and didn't do well so had the pouch out before having my family. But if I could... [ more ]
chiromancer My situation was a bit different I had my J pouch disconnected and left in place and an end ileo performed. It was assumed I would have the disconnected J removed at some pt. The disconnected J never behaved and had, after the first month lots of secretions. I just had it removed though my butt is normal looking, not sewn up aka Barbie or Ken butt. There is an anal closure on the backside of the anus. I think the cancer risk in the unused J is real but pretty small. There are some real... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
medicare rates for jpouch surgery
U UCWarrior2010
Scott F "Out of pocket maximum" most commonly refers to an annual cap on your total copays (and generally deductibles). Yeas, they stop charging you copays after you reach that amount. There might be a maximum on an individual hospital stay, but that would be unusual. *However*, the out of pocket maximum rarely applies to out-of-network fees higher than whatever the insurance company deems acceptable. So your actual out of pocket would be up to the insurance cap plus the difference between the... [ more ]
UCWarrior2010 Ooops...I meant 60% of 200% of medicare rates. [ more ]
UCWarrior2010 Yes, I do have out of network coverage. I think it is capped at 200% of medicare rates. Also, it has an out of pocket maximum of $4,000. I am not sure if that means that any surgeon's fee above that $4,000 would be covered by the insurance company. Beckysmom - Thanks for the advice. I will call up my doctor's office tomorrow and get the codes. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Medical necklaces
S Shannah
TE Marie I wear a bracelet and have one for every day and the other for other occasions. I also carry a typewritten listing of all of my medications and supplements plus daily doses and listing of surgery dates and physician references. [ more ]
ActiveUC'er Some people don't wear one, some people do. I personally feel better wearing one (well, a bracelet for me). However, if your doctor tells you to wear one then wear one! [ more ]
Subzeromambo I programmed my med history onto a flash drive I carry on my running gear. The med alert necklaces carry very little information. If I am hit by a car, I want anyone who works on me to avoid doing something stupid. I am allergic to many meds as well as missing seven organs. The flash drive is marked with a med alert tag and attached to an outside zipper so it is very obvious. I also have the info on my phone, on a card in my wallet and will soon have it on a shoe tag that also documents my... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
The dreaded 'your doctor is out, you'll have to deal with his covering physician'
LionsPrideLionsPride
LionsPride So good advice by all, thanks. After trying several things I ascertained my regular GI is 'out of touch' and my internal medicine doctor is on vacation already. He's another issue I won't get into, other than to say he no longer prescribes general maintenance meds for longer than 3 months so he can get you in and bill an office visit. He has many other tricks like that I've spotted. He's on his way out too. Anyway, I didn't hear anything so I called my pharmacy around 7 to discover I had a... [ more ]
liz11 What about your primary care doc? He/she can prescribe antibiotics. My pcp always steps in when i cant get ahold of my gi or surgeon. And she trusts my knowledge and will write me what i neeed. After all, in your case, its just an antibiotic. good luck [ more ]
CTBarrister This statement is not correct. No seasoned doctor who is experienced with treating pouchitis would make such a statement. My pouch expert has an assistant who knows what his orders are and she handles all my prescriptions. Therefore his non presence in the office is an irrelevant issue. However if I am leaving on a vacation I always call well in advance to make sure I am stocked with what I need. My Doctor's practice group is a large group of digestive disease specialists affiliated with a... [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Modern Western Medicine vs. Natural "remedies"...
RJGRJG
RJG Hi Ms. Frustrated. I'm glad you appreciated what I wrote and the responses. I have the tendency towards writing much more than most "Americans" wish for reading; always a bit personal. However, I believe the issues of and around and preceding the J-Pouch are horribly personal and isolating that part of relaxing around this incredibly personal issue is hearing from within another person with similar experiences... Although I have the tendency towards writing much and very personally, I tend... [ more ]
FrustratedButFighting very good points you made here! Interesting read, thank you. [ more ]
RJG Thanks for your responses Sue. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Med Alert necklace?
S Subzeromambo
ActiveUC'er medicalert.org now has jpouch, j-pouch, j-pouch repair, koch pouch (my spelling error), continent ileostomy reservoir, and I don't know what else. They just did a re-do of their website and all of these new options suddenly appeared! [ more ]
kathy smith Risan, here are some previous threads that may answer your questions. kathy [ more ]
Former Member For those of you that have a medical alert for the j-pouch what information do you put on it. I'm not sure what to have engraved on a bracelet or necklace. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
C.diff and constipated???
RM Rowans mom
Rowans mom Gave her two shots (4oz) of grape juice didn't really do anything. I am frustrated completely about the bloat and gas. I am worried she will pop. [ more ]
Rowans mom Popsicles was the only thing I could get her to eat while on a liquid diet. Texting hubby for some now. [ more ]
liz11 Popsicles are full of sugar and can help get things moving. Hot salty broth. Hot chocolate. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Biotin absorption or lack there of...
RJGRJG
RJG Hi Jan, I agree with you about the necessity of finding an actual FAP/Gardner's Syndrome specialist. I'm very skeptical about finding one here in Mexico. Actually, I was surprised when the GI told me that he knew of FAP/Gardners and that he had met my surgeon from New York... No, he's not an FAP/Gardner's specialist. In fact, the sign infront of his office doesn't even mention GI, but Surgeon... He's one of 3 surgeons here in Guadalajara whom perform liver transplants... was a recommendation... [ more ]
Jan Dollar Is your new GI at the top of the FAP/Gardner's field in Mexico or just in the GI field in general? I ask, because the FAP/Gardner's field is a subspecialty that I think you need a GI with special expertise in the field of FAP. I certainly would not try to tell you how to live your life, but not getting the appropriate monitoring could be risky for you. Obviously, it all depends on your specific diagnosis, as I understand that the genetics of this disease are not universally the same. Still,... [ more ]
RJG Thanks Jan. I really appreciate your concise response. At the moment I am on my way to a clinic for making an appointment for certain tests. I will read those articles when I return. You have a point about ever person's experience is different. We have my father's experience and his older brother who didn't develop cancer as did mine, although he was diagnosed with FAP and had his colon and rectum removed, and my sister, two cousins and I... FAP/Gardner's Syndrome is much different for all... [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
pain old ileo site
FM Former Member
Jan Dollar Sounds like adhesions to me. They are formed within the first few weeks of surgery, last forever, and could cause problems at any time just like you describe. Out of the blue, BAM you have pain, then can resolve just as quickly. The ostomy site is the most common site for problematic adhesions. Jan [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Advice needed on whether to go for Colectomy
FM Former Member
Jan Dollar Typically, if the diagnosis is ulcerative colitis, total proctocolectomy is recommended once surgery is indicated, except in exceptional cases (such as if Crohn's is suspected), because the disease returns in the remaining colon, requiring additional surgery. Jan [ more ]
parag ask surgen if sub total colectomy possible in your case, because in your case only sigmoid colon is inflammable, they can save rest of large inestine..... [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
Persistent Sinus Tract Wound
FM Former Member
JaniceM Oh, it was called a fistulagram. Even though they did not suspect a fistula, the surgeon wanted to be sure what was going on. It was a tiny needle the tech inserted very very gently, just enough to get the tip in. I still have my spincter muscles so squeezed them to keep it in (plus he taped it cuz he knew the opening was so small and not deep) through the 5 minute test. [ more ]
Former Member Thanks Janice ! I see my doctor today & will def'ly ask for an X-ray and go from there. Even though I'd never wish these problems on anyone, it is reassuring to know I'm not alone. I may be picking your brain a tad more after I see him :-) Thanks again, Ali [ more ]
JaniceM Ask away, sure! The 2nd time, they put a balloon type them to keep a tiny bit opened while it healed. It never closed up completely even though you could barely put the tip of a q tip in it. This last time, the colorectal surgeon cleared it out and no balloon. But, it took time to heal as I was older with more health issues. But, once it did, I was so happy. No more pain or discharge. If the surgeon completely redos it, it can take several weeks to fully heal. But each week so much better. [ more ]
See all 5 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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