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J-Pouch ForumsFAP Forum
please help
MP momofa princess
BecMom I don't know if they still do this, but my daughter was diagnosed genetically at age 12 but her polyps were quite small. The doctor started her on Sulindac which for a couple of years made them disappear, then they started reappearing. With yearly monitoring, we made it until she finished high school which was our goal. Then a one step surgery which was quite successful. [ more ]
TrishD I was diagnosed at 14. Didn't get my surgery until I was 29! They just kept scoping annually. I had my J-Pouch surgery at UCLA in 1 step. No need to an Ileostomy!!! If you wait to have surgery too long (after cancer rears it's ugly head) then a 1-step procedure is out of the question. It is a fine line you have to walk. My daughter was 21 when she had her surgery a year ago and it was 1-Step as well and Laparoscopically! Much less invasive than my surgery. Talk with your GI Dr. Ask questions... [ more ]
Sandyj I would start with Monica Zherebstov (Cheer eb stof) she also works for providence pediatric GI in Sacred hearts doctors building. She is very thorough and great with kids. She has quite a few patients with FAP and has studied my daughter's case extensively and due to her finding polyps in her duodenum at 2 yrs old she now has adjusted her protocol for screening on FAP kids. I have never been so fond of a doctor. She will be able to console your daughter and help her understand what lies... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bravo pH sensor stuck??
msjovimsjovi
Jan Dollar These things can become lodged, but it is not likely in the pouch. More likely it is somewhere in between, where you may have a narrowed area. Easy to retrieve if it is in your pouch, esophagus, or stomach. Not so easy if it is beyond the reach of a scope. You need to get an x-ray to see if it is still inside. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Peppermint Essential Oil's effects
G gela
Sunshine62 I am a regular users of essential oils and also a Health and Wellness educator for them. I use a special blend to aid my digestion. Please send me a private message if you would like to learn more about how they help me. [ more ]
gela ATX Guy did u rub it when u tried or orally?? [ more ]
skn69 Apparently (and this is yet to be proved by me) but if you put a few drops of peppermint oil on the soles of your feet within an hour you have minty breath! It is absorbed through the feet and ends up passing into the bloodstream...So for those who do not like the taste but want the side effect they you could try putting it in your shoes instead of on your tongue! Sharon [ more ]
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J-Pouch ForumsPouchitis
Advice for rotating antibiotics
TinatTinat
Hollywood Flagyl 500mg is without a doubt the worst tasting med on the face of the earth. However, it is the only broad spectrum antibiotic that continues to work for me. If I don't use Flagyl I start burning, it feels like a match was lit in my rectum and other symptoms surface. So for me it is Flagyl. Good news it is cheap [ more ]
FreeAtLast I've actually gotten to the point where i can't even think about taking Flagyl without gagging. I start gagging when I pick up the bottle. Funny, huh? Sadly, it's the only thing that resets my system for another 8-10 days. [ more ]
Michelle C Thanks I am the same have had this since day one, surgery was still the right move �� [ more ]
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J-Pouch ForumsGeneral Discussion
Routine Pouchoscopies?
G golflady1119
UKSue The current thinking at my hospital (St Marks which is one of the best in Europe) is that genarlly speaking, yearly scopes are unnecessary. I was about to go to bi-yearly after 5 years post colon cancer/pouch surgery, when I developed cervical cancer last year. Even thought there is no connection between the two, my Consultant has decided to keep to yearly scopes for the next couple of years at least. I am quite happy to have them every year (I am so lucky that the NHS pays for mine) and... [ more ]
Spooky There are some varying opinions on this. Like any endoscopy procedure, pouchoscopies are invasive, so there is always some inherent (if even small) risk when getting one done, and hence there are some physicians who feel they should be done more infrequently. However, others feel that annual scopes are indicated, and in particular, if the reason for your colectomy was dysplasia, then it may be recommended that you have a scope more often as cancer can recur in the retained rectal cuff. In my... [ more ]
lclassen I've had my pouch for 18 years, and get a scope almost every year, with my regular gastro doc (been with her since before my surgery). I always have sedation... the more, the better. I have no desire to feel anything!! Also, my prep is very easy... nothing to eat after midnight, then 2 enemas about 2-3 hours before my appt. time. No modification in diet, and nothing nasty to drink. �� [ more ]
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J-Pouch ForumsPouchitis
Length of Cipro Treatment?
J J9Pouch
Scott F Sometimes inconsistency may mean that your doctor did some reading since the first expressed opinion. Other times it may mean your doctor forgot something since that initial opinion... [ more ]
J9Pouch Thanks, Scott! I hate when I get inconsistent information from my health care providers. Sometimes it's so helpful to have insight from other patients! [ more ]
Scott F 10-14 days is typical. 7 days would be unusually short, even though the symptoms typically clear up *very* quickly. [ more ]
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J-Pouch ForumsGeneral Discussion
stool color yellow w/ increased output/ saw bright red blood twice - help!
AW Angie Wilson
Angie Wilson Hi Jan - yep FAP - I was hoping to hear from you - yes, you are right and I have gone into "coping mode" and am kind of past the panic. I felt so bad physically those two days...just scared me. Well, we know all kinds of physical pain is being endured by people on this site - and we have endured it in the past - and we've come through it. Yes, worst case scenario was in my mind...and it won't go away totally - but is human... I am really ashamed to say my last scope was 2 years ago - not... [ more ]
Jan Dollar You have FAP, right? So, pouchitis is less likely, but not impossible. Could be a virus or other gut infection. How long since your last scope? Could be a bleeding polyp, or just gastroenteritis, from any number of things. It is common to let your mind drift to worst case scenarios, but that won't solve your issue. It will just generate more stress hormones, like tossing gasoline on the fire. Now is the time to gather your coping skills for finding your calmness. You've done it before. Once... [ more ]
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J-Pouch ForumsGeneral Discussion
Fevers every night
Ashley22Ashley22
Jan Dollar Gut inflammation is a likely cause, considering your symptoms. Crohn's is high on the list for that. That said, some abscesses defy detection by CT. MRI might reveal something new. The fact that you already have a history of fistula, it is quite possible to have developed another one that has not been revealed yet. FUO (fever of unknown origin) can be very tricky. For more info, try Googling fever of unknown origin. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
feeling scared
AW Angie Wilson
Angie Wilson Great question - started taking capsules yesterday - that was once of my first thoughts. Did not know nausea could be a symptom - so thanks for that info! [ more ]
Lambiepie Angie, just one more thing: do you get enough iron? Nausea was actually one of my symptoms when I was really iron deficient as was extreme fatigue. Iron supplements darken the stool so maybe a deficiency lightens them? I know I've been on the iron bandwagon lately but I suffered so much when my numbers were low that I'm trying to prevent others from the same thing! [ more ]
Angie Wilson Thanks so much for replying! It is amazing how just having someone out there reply gives a person a lift - I must remember to reply to others! I think my stools are often yellow/green too through the years. I get cha - this is one of those, "this is different" things - you know your own body, etc. -you are right - nothing to do but see doctor and hope for the best! Thanks again for the kind reply. [ more ]
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J-Pouch ForumsGeneral Discussion
For those w/disconnected pouch (stoma, pouch not removed)
GinLynGinLyn
Scott F Huh. Well it's certainly not food particles if the surgery was performed as you were told. I'd guess an inflammatory process that needs to get looked at. Time for a pouchoscopy? Good luck! [ more ]
GinLyn No, it is well and truly disconnected, with an end stoma. After I wrote that, things went back to "normal" but today I'm having coloured discharge again, and even tiny "flecks" of what look like very small food particles maybe? How could that be? Think I'll be calling in to get an appointment with the surgeon again; this can't be right. Gin [ more ]
Scott F Gin, is the pouch really fully disconnected, leaving you with an end ileostomy, or is it just diverted with a loop ileostomy? [ more ]
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J-Pouch ForumsGeneral Discussion
codine phosphate
Paul HPaul H
KOB I was on 4 endone tablets per day after surgery. After about 6 months, every time I stopped taking I felt nauseous. Realised there was some dependency. Stopped and it took a week before the nausea eventually went. Recently was on 30mg Codine (with paracetamol) to try and slow the gut (rather than Lomotil). Same thing, after a period of several weeks, stopped the codine because it wasn't doing anything and felt nauseous. Realised that, once again, a dependency had developed. And, yes, even... [ more ]
Scott F The rationale for more loosely offering the combination drugs is that you'll run into major trouble with the other ingredient before overdosing on (or even just taking a high dose of) the opiate. In the case of Lomotil, the atropine becomes very unpleasant if you take much more than a therapeutic dose. In the case of Codeine/acetaminophen it's a bit darker, since the acetaminophen will destroy the liver at high doses, but doesn't feel unpleasant early on. I'm not sure I want to completely... [ more ]
Paul H Thanks Jan & Scott. I can't get 30mg Codeine OTC & Doc doesn't want to prescribe it, will ask GI in May, but strange how I can get 30/500 OTC. Can't get Lomotil here in Catalunya either. Paul [ more ]
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J-Pouch ForumsGeneral Discussion
vit b12 injection
Paul HPaul H
dew Read your bottle. It should say IM or Sub-Q. Do sub-Q, little to no pain, in fat with an insulin syringe. [ more ]
Paul H Thank you, I'll give it a try. [ more ]
scw I give myself monthly B12 shots. I use an 1m insulin syringe. I give myself the shot in my thigh and insert the entire needle for stability while pushing the plunger. As long as I relax my leg it does not hurt at all. [ more ]
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J-Pouch ForumsGeneral Discussion
iron type?
H hattie
LHetti I take ferrous gluconate daily, 28 mg (with 500 mg chewable Vit C to help with absorption) on an empty stomach first thing (an hour before I have bfast). I don't find any issues taking it and my hematologist said she finds to be easiest kind to take. I used to take to twice daily, but now just once a day. I was majorly anemic after a hemorrhage, so the hemotologist had me try an iron infusion, but I was allergic to two types of IV iron. Too bad because that's an easy, fast fix. Instead I... [ more ]
mgmt10 I started seeing a hematologist because my iron levels would always drop very low even with taking an iron supplement. From reading, it seems that many j pouchers have issues with iron absorption. My hematologist suggested iron infusions since the oral iron wasn't cutting it. They have helped tremendously and I feel better right away. If your ferritin level is very low, it takes a long time to build that back up orally. Good luck, I hope the oral iron does the trick. Just thought I'd share... [ more ]
Spooky I believe the difference has to do, in part, with absorption rates and individual tolerances (i.e. like magnesium - citrate has high absorption but also has side effects including diarrhea, so it may not be a good choice for everyone.). As you are doing, you may have to rotate to find one that works for you while having the least bothersome side effects. I have been taking iron in the form of ferrous fumerate for years and have had no problems with it. I take it right before bed as... [ more ]
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J-Pouch ForumsGeneral Discussion
takedown in a week...question regarding meds/probiotics,etc...
PouchomarxPouchomarx
SonnyJ215 How are the probiotics working for you? ... My jpouch is month old today and I bought some probiotics but I'm scared to try them and Wants your opinion on prescription Imodium ? [ more ]
king of the throne I just had my takedown three weeks ago and just started probiotics today. No signs of pouchitis yet thank god but beware of the butt burn. This is no joke the pain I am suffering from but burn is excruciating bringing me near to tears. I would highly recommend buying a portable bidet from ebay and cleansing with this from the start. Rinse well and pat dry with T.P. when done. It would not hurt to have a jar of Ilex paste on hand either. The surgery is a breeze compared to prior ones but... [ more ]
n/a 1/day. I've also added s. boulardii (Jarrow's) - my BIL contracted a severe case of c diff and after getting him on it I decided it wouldn't hurt to be on it as well. [ more ]
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J-Pouch ForumsGeneral Discussion
First obstruction after 6 yrs
C Clynn173
tf I can tell u that the diet is so key, and wavering from that diet which only u can determine due to u r situation. I have a J-pouch since 2013 and my ulcerative colitis was so severe that I had no choice. I know I have tweaked and tweaked my diet dozen of times. For me it always comes back to FODMAP diet. I never had pouchitis but I have had c-diff a few times, inflammation. The latest is severe scar tissue at the cuff. This is why I have burning and pain after eating. I must be strict with... [ more ]
Jan Dollar Probably not. Your gut probably just kinked against existing adhesions. I doubt anything you did or didn't do had any role in this. Jan [ more ]
davek Thanks for the replies. I am post reversal / j-pouch a little over a year. I did have pouchits recently, and now am okay. I don't eat roughage, salads nuts or anything that will not break-down. so, i am very careful of what I eat. I did have peanut butter and jelly. Could this have caused a blockage? Dave [ more ]
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J-Pouch ForumsOstomy & Skin
Fungal Rash/Allergic Reaction
caityohcaityoh
Saff Hi Caityoh, I did experience that once also - my nurse suggested taking some time when you get up in the morning (when there is little activity down there) to remove pouch, have a wash, then apply some anti fungal cream - and leave the pouch off for as long as you can - i think I did it for 20-30 min before washing off and putting pouch back on. I used canesten cream - an antifungal. That worked for me, [ more ]
Lambiepie Hey Caityoh, did a nurse suggest antifungal powder? I've heard about it on here, ordered it when I had my temp loop ileo five years ago but never got around to using it. Maybe leaving your appliance off and airing out your skin? Also, it might help to contact Hollister directly and ask for advice and suggestions. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch Success
aka KNKLHEADaka KNKLHEAD
Momma It's always good to be reminded of the success stories! My husband has a very successful jpouch for 10 years. He had 1 blockage 3yrs post take down, due to scar tissue. But now, he eats whatever he wants (except for gassy/spicy foods). He never had pouchitis or any incontinence/leakage. He has about 6 BMs per day and 1 BM at night. His only complaint is the occasional butt burn. My 15 yr old son just had step 2 of 3 and is doing well. His take down should be in June. We pray his pouch is as... [ more ]
LORI726 So glad to hear your pouch is happy!! I was never able to release gas with my J pouch unless I was on the toilet. Lots of wishes for continued success for many decades!! Yay pouch re-do! [ more ]
Pouchomarx Hey guys. I can't recommend Dr Remzi enough. I had so many issues with my original pouch since it was done in 2008. I did have my redo done at Cleveland Clinic on March 7th like AKA Knuklehead stated. So 10 days later and I'm doing pretty well. Only issue is gas pains. I only trust myself to release on the toilet right now. I am going to bathroom every 4-5 hours right now and not cuz urgency but because the gas. I feel pretty good and going back to work Monday after 2 weeks. My butt was raw... [ more ]
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J-Pouch ForumsGeneral Discussion
Possible Stricture?
dewdew
Scott F Dew, some people do have to stay on antibiotics in order to feel well. I hope that's not your situation, but in my case, at least, antibiotics enable me to feel well and do whatever I want. That's not a terrible outcome. [ more ]
dew My Pouch is functioning wonderfully at the moment. My concern is it goes back to normal after I end the Cipro. [ more ]
Jan Dollar That's the typical script. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Up 4-5 night 1 year since takedown
U UjohnjC
UjohnjC Still going 10-12 times a day though thinking I will try marshmallows [ more ]
Michelle C I also have been told to eat marshmallows when I extremely unwell. They are easy to eat the sugars replace lost electro lights and the gelatine helps to bind your stool. [ more ]
UjohnjC Well started feeling little better this weekend after 12 days of xifacan still having some explosive gas rt when I get up in morning it seems so keeping fingers crossed jan thanks again john j [ more ]
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J-Pouch ForumsGeneral Discussion
Blockages & Fissures
drone3drone3
drone3 Thanks CLZ, that was really informative. I actually do think its adhesions and not chrons and i would opt for elective surgery but my surgeon is pretty much against it unless its an emergency. My more immediate problem is fissuring and hemorrhoid, sphincter spasms and irritated anal canal. This is driving me crazy, i have had it under control four times but then it will just flame up and attack me with tenemus and crazy pain. I just made the stupid decision to go on a liquid diet and... [ more ]
clz81 Hey Drone3. Your story sounds just like my year last year. I was in emergency 4 times for obstructions...all which resolved within 24 hours to a few days. Between x-rays, MRIs, scopes, and my history, there was disagreement between the GI docs on the cause (adhesions vs. Crohn's). Then, a year ago, I ended up in the hospital again, but this time, it wasn't resolving. After being my 5th time in the hospital, it was time to go in for surgery to remove adhesions and check things out. The... [ more ]
drone3 Hey Wallflower, thanks for writing. Just got scoped today, my head is kind of spinning. Dr found anal fissuring and dead end fistula at a shelf like narrowing just above the pouch that shows some ulceration. It was kind of assumed my blockages were due to adhesions but now the Dr thinks it could be Chrons due to the ulceration , he took biopsy and I have to get a follow up MRI. Feeling a bit down, I have had my pouch since I was 13 and it's been 22 years of no meds and lots of fun. The last... [ more ]
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J-Pouch ForumsHelp! Need advice now!
C-Diff/ Severe dehydration/ very bad cramping nausea vomiting in the hospital now...
Jamie_M_WJamie_M_W
Jamie_M_W Thanks for the info. I'm going to discuss this with my gi doctor when he comes back from vacation I also will be seeing a infectious disease doctor. I'm still on the vancomycin doesn't seem to be doing much I still have another few days of it though I'm taking floristor also and extra probiotics. I called down to the mayo and spoke with a nurse of the doctor I've seen down there and they told me they have donor stool. But of course I would needs consultations first. Its a 5 hour drive. My gi... [ more ]
deweyj Personally I think Dificid is just another med. I do NOT know the details of its comparisons to Vanco and Flagyl when it was trialed. But that aside I would indeed explore FMT, it has something around a 90% success rate in vanquishing cDiff. There is a company that has pre donated stools. Just heard about it at a CCFA symposium over the weekend. not sure of the details so not much help. for recurrent cDiff, FMT seems to be the best answer. [ more ]
Jamie_M_W Hi , I just found out it costs 1,000.00 here in my town that my donor would have to pay out of pocket. As insurance don't cover the donor. I'm on disability. There's no way I can pay for it. But, my gi doctor isn't back until the end of the month. I'm hoping my extra vancomycin and probiotics will help with this. I will also ask about the dificid. Thanks so much for the advice. Jamie [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown #2 few questions
P PHedges
Mysticobra Your very welcome. I do hope you get the appetite back. [ more ]
PHedges Thanks Scott and Richard, yes I forget Patience....... ohhh so difficult after being sick for three plus years, Thanks for reminding me that no two pouches are the same and I can not expect the same results. I am slowly working with soups and hope to get an appetite sometime. Yes, Scott I will ease off the pain meds since I know they have more side effect than benefits at times. Thanks for helping me and responding. I needed it. [ more ]
Mysticobra I cannot answer your question. But the appetite thing happened to me. I completely lost my appetite and thinking of food made me nauseous. Never... In my life have I ever felt that. Never. I don't have my pouch anymore... Never worked right so I had it removed but the whole time I had it my appetite never fully came back. And neither did my weight. Is it a side effect to getting the pouch? How many people lose their appetite after getting the pouch? It was so weird. I knew I looked terrible... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pyoderma
CshellCshell
Catinthehat Yes I have had Pyoderma Gangrenosum on my lower leg. It is related to UC in that it is an inflammatory auto-immune condition. Mine lasted about a year but it can vary a lot in intensity from person to person. I think that finding a good dermatologist is the best thing to do. I had the cortisone injections and I am on Imuran (azathioprine) to suppress my immune system. Mine eventually went away but has left some nasty scars. Search online if you have not done so. There are some facebook pages... [ more ]
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J-Pouch ForumsPouchitis
First time experiencing pouchitis
DW Dude, where's my colon?
Jan Dollar Good news on the C. diff results. Not so great on the scope findings. Sounds like you turned a corner though. Jan [ more ]
Dude, where's my colon? I ended up being scoped last week. The doctor said my pouch looked terrible. Everything was red and inflamed. The doctor told me to continue the Flagyl and steroid enemas, but she let me stop taking the Levaquin. The good news: the c.diff test was negative, and over the past few days things finally seem to be calming down. I'm down to 6-8 bathroom visits during the day and 1 at night. Hopefully I'll continue to improve after I'm done with the Flagyl, and this won't become an... [ more ]
Jan Dollar Seriously, if the change in antibiotics does not turn this around in a day or so, be sure to see your surgeon, or the ER. Antibiotic caused pouchitis is essentially the same as antibiotic caused colitis, AKA C. difficile infection. You could need vancomycin and can quickly dehydrate. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
E coli + fistula: Jan??
A akteacher
Jan Dollar Yep, like camping without the fun. Jan [ more ]
Scott F As your husband concluded, it's just darned inconvenient to live without running potable water, with or without health issues. [ more ]
akteacher Thank you both for responding. I think I'm going to stay put in SC until the issues in the village are cleared. I've had too many problems with the fistula & it's just a real concern to me that something will happen. (My luck is....if it's going to happen to anyone, it will happen to me!) My husband is in the village now & he's saying they are still without water & aren't really sure when it's going to be back on. He's decided to head to Anchorage until the week end. If &... [ more ]
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J-Pouch ForumsGeneral Discussion
Don't have gas
PouchomarxPouchomarx
Spooky This sounds a little like my post surgical course. I had ileus, so no movement initially, then I was passing very thick stool after about 8 days. A couple of days before I was finally discharged home, I developed gas and the discomfort from the gas was excruciating. However, my surgeon at the time thought that was an excellent sign that things were starting to progress. So, while uncomfortable, perhaps take it as a sign that things are starting to move along as they should. That said, I... [ more ]
KiwiPoucher The only way I can pass gas is to lie down flat on my stomach with my right knee slightly bent and wait! [ more ]
CeeeeCeeee Gas is my friend and when I don't have any I truly miss it! I call it my duct cleaner. I find that if I eat an apple a day (skin and all) it does keep the doctor away and the helpful gas doing its job! Usually I pass gas at the conclusion of a B.M. It is my signal that I'm empty and good to (not) go for quite awhile! [ more ]
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J-Pouch ForumsGeneral Discussion
To J pouch or not?....Is and is not a question
C Crazy1
Crazy1 Thanks Jan for the reply, and I will reply back. I guess 1 isn't going to be a problem, as long as I am mentally ready( If I decide ) for what it entails. Something about more possible complications( not failure ), no specifics were given. My fear would be an NG Tube, and your laid up not drinking anything for awhile. - Didn't get that deep into the conversation, I was so tired, I should have rescheduled, as I was putting all my thought on hernia( more on my reply later ). I literally had 3... [ more ]
Jan Dollar The hernia issue will sort itself out when they go in to complete your surgery (if you decide to move forward). Imaging is not perfect and unless there is a glaring defect, it is open to interpretation. I had multiple CTs that visualized a presumed adrenal tumor. I even had modest hormone elevations to support it. I had my adrenal gland removed and it turned out it did not contain a tumor. There was just a ganglioneuroma nearby. The point? They don't REALLY know until they get in and have... [ more ]
cherylscudera ❤️
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J-Pouch ForumsPouchitis
Is it possible to have a mild case of pouchitis...
KarenchaseKarenchase
Karenchase I use a recipe similar to the one on this page: http://dontmesswithmama.com/ho...s-electrolyte-drink/ You can juice your own fruits if you have the wherewithal, or I just use "fresh" orange juice (i.e. not from concentrate) and realemon. Also if you have the fancy organic honey and salt, go for it, but any old honey (or even sugar) and salt will do. Good luck! It tastes a bit weird at first, but I find it works so well, I can get past the taste and enjoy the refreshment. [ more ]
BethT Thank you! I don't think it is the probiotics. I have taken some in the past, but I recently started taking some by Doterra (an essential oils manufacturer). I have not been very consistent with them. However, I did also just begin taking another digestive enzyme by them last week -- maybe I should lay off of it for a few days and see if there is an impact there. I think I will try out your pedialyte recipe as well! Hoping all of this resolves on its own [ more ]
Karenchase Beth, what you describe is basically what has happened to me in each of the 2 Decembers that have passed since my takedown. Weirdly, I experienced this in almost exactly the same week of the year! In 2014 the dehydration got so bad that I went into hospital and stayed there for 5 days, getting weaker and weaker as I was on a clear fluid diet (which always kills me). This past December I managed to avoid hospitalization by recognizing what was happening and taking a couple days off work and... [ more ]
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J-Pouch ForumsGeneral Discussion
crohns in a j pouch
A anon
boy's mom Humira has been helping my son. He went on it 8 months after he got his pouch. He is also on rifaximin ( and supplements). [ more ]
Lucho I too developed Crohns and I took many meds to help control flare ups but nothing seemed to help. My doctor recommended Humira. I take it once a week and it sure has been helping me with no side effects. Give it a shot. Hope the best for you. [ more ]
drone3 I had my pouch since I was 13, last two years i have been feeling weak and having regular blockages and after the scope today they think I may have Chrons. I haven't taken meds in 22 years and also fear losing my pouch. Stay strong! Please keep us posted on your progress. -d [ more ]
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J-Pouch ForumsGeneral Discussion
Loperamide/Diet/Help!
L LizzyB
LizzyB Thank you! I really appreciate the replies. I will be experimenting again tonight Jan - I hope things improve for you soon Liz [ more ]
Paul H Hi Liz, As Jan said try the peppermint caps with food, for me I get the same burn but twice a day with a good amount of food it's good. Beano also works well for me if I'm eating windy foods. Like you I'm up 3 or 4 times per night but have experimented & the only things that work for me are eating a big meal at lunchtime & just a snack in the evening (but even that means 1 or 2 visits) or Codeine Phosphate, I took 30mg last night & slept through (heavenly). Unfortunately it's... [ more ]
Jan Dollar Yes, you should get the vaccine. It could help prevent future occurrences. http://www.cdc.gov/vaccines/vp...s/vacc-need-know.htm Jan [ more ]
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J-Pouch ForumsGeneral Discussion
New to J pouch
JesseP22JesseP22
ElmerFudd Jesse, please describe what you mean by not enjoying your food and not feeling well after eating. A number of post-takedown symptoms can persist for months but I'm not sure about the generic discomfort you write about. It took months, almost a year, for me to have somewhat "normal" BM frequency. [ more ]
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J-Pouch ForumsGeneral Discussion
1 week to go till takedown #2
PouchomarxPouchomarx
Pouchomarx When did he get the blockage? I had surgery Monday and started eating soft GI diet Wednesday afternoon. Late Wednesday started feeling unwell. Did X-ray and stated I had partial obstruction. It's Friday night and just ate dinner. Said if no issues I can go home tomorrow. Said it was right at the connection site but didn't look like scar tissue just swelling. Thing is I have had stool output every few hours but not a lot of gas. I know they want gas but it's been pretty non existent for me. [ more ]
Jeffsmom Pouch, Jeffrey had his 2nd take down January 28th. From the onset, it "felt" totally different. Other than the blockage, he is doing so much better. He goes back to the surgeon on Wed for a check up but he is doing great. Hopefully, things will be better for you as well. Both of you have had such a long journey with this stuff. Good luck to you! Good thoughts that everything will be just fine! [ more ]
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J-Pouch ForumsPouchitis
Possible pouchitis
M MandiG
MandiG Thanks Jan. I'm worried I will always feel this way. When Ill I must wear diapers for fear of having accidents. [ more ]
Jan Dollar Ah, makes sense, since pouchitis is uncommon with FAP. But, uncommon is not the same as unheard of. Plus, you can still experience the symptoms of pouchitis without pouchitis when you have SIBO (small intestine bacterial overgrowth). This is something that is not unique to IBD, so you could easily have it. The treatment is the same, antibiotics. Jan [ more ]
MandiG I am not currently on any antibiotics. Have asked a few times in the last few weeks but no one is willing to write a script when they don't know about the issue at hand. I do take fiber supplements with no effect. I do not have chromed disease as my disease is FAP. [ more ]
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J-Pouch ForumsGeneral Discussion
Psyllium Husk - Brand? Powder vs Capsules?
T tango9
Scott F My wife and I were bemused by how mediocre tasting the wafers are. We took to calling them "nasty biscuits." By extension, we started calling the other forms "nasty capsules" and "nasty powder," even though the capsules aren't nasty at all, just useless for some of us. This wasn't really a term of disgust for us, we were just teasing the weak attempts at palatability. [ more ]
Chad44 I think powder works best the capsules were a total waste of money..it's not enough to bind with the food and expand and absorb in my opinion. [ more ]
CTBarrister Powder and capsules are not the only choices. Metamucil also makes wafers. Two different flavors in fact. I have used them and the powder, and prefer sugar free powder mixed with water. It's lower in calories. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Anal Discharge after ileostomy
ItsanewworldItsanewworld
aka KNKLHEAD Hi. It's normal. You still have some intestines down there and you will be expelling mucous and maybe even a small bit of blood as a result of your surgery. As long as it's not too much, you're good. I think it's also a good sign that things are working down there! Be careful not to strain too much. It will get less and less but ma continue until your next surgery. [ more ]
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J-Pouch ForumsGeneral Discussion
Mucosa irritation
FM Former Member
Former Member Cheers Jan! [ more ]
Jan Dollar Not likely. The secretions in your pouch are way different than the secretions in your nasal sinuses. Rinsing your pouch with tap water actually removes irritants because it facilitates complete emptying. If you are just talking about rinsing your butt off with a shower spray after bowel movements, it is a different thing. That said, plain water is fine, no salt is needed. However, soap is not so great and THAT can be an irritant. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Butt Burn
M MandiG
Tanner I wet the TP with warm water before wiping. Great to use is Anhydrous Lanolin put on up inside and on rash. Buy from your pharmacist. Comes in a tube. [ more ]
MandiG Thank you all for your opinions and advice! I really do appreciate it. I apparently have had pouchitis for at least the last 6 months and the doctors did not know enough about my pouch to diagnose me correctly. Now I am waiting another two weeks just to see a doctor for it who still doesn't know squat about it and there is no changing that because where I live there are not very many pouchers. Oh well. This last week between the butt burn hitting me at the worst possible times and all the... [ more ]
Mysticobra Man... When I had it there was no relief... Period. It would subside until the next time I went and at times I was pulling my hair out sitting there. I don't have the problem anymore. But... No pun intended... It seems that the burn goes with the territory at one level or another. There are things to calm it but but it seemed while I had my pouch it was there all the time. No matter how clean I kept myself or no matter what I ate. It got so bad with me I used lidocaine cream. And that... [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Horrid Joint Pain in hip area
dgtracydgtracy
Jan Dollar There are a number of folks with ankylosing spondylitis and related disorders that see improvement by drastic elimination of starches. Jan [ more ]
drone3 This may be met with scepticism, but i can honestly say for my debilitating aggressive sacroilitis the only thing that makes it go away is to avoid all starch. I had some success with curcumin (life extension brand) and feet up the wall yoga pose but it was all temporary the only thing that made it go away was the no starch diet. You can learn more about it here http://www.kickas.org/londondiet.shtml [ more ]
dgtracy ironic to have seen this thread revived, i had a doc appt with my Rheumy the other day, i was told this was all Enteropathic Artheritis around last year sometime, been seeing the rheumy for a bit, shes talking about putting me on cimzia. last week i went to get out of bed and just fell, i tried to walk a bit more to see what happened and soon as i took another step, down i went. it took a good few hours for the pain to loosen and i could walk better and better, but i have been taking Tumeric... [ more ]
See all 30 replies...
J-Pouch ForumsGeneral Discussion
W pouch?
D Deadpool
Mysticobra I agree. It is a very personal decision. I knew deep down it was not gonna work. It was just getting worse. I applaud you for plugging along. I just couldn't do that for any longer and it was not a spur of the moment decision. Nobody... Wants an appliance. But as I move on with it I find its no big deal. And that even surprises me! The thoughts going through my head beforehand. Oh man..... But now that it's done. I am better off. Just a different way as is the pouch... Of doing it. Richard. [ more ]
BillV Continuing with a procedure when things don’t turn out the way they were *supposed* to is a very personal and individualized decision. I was able make adaptations to my lifestyle to accommodate bathroom use and BB pain. During those 30 years, I held a full-time job, enjoyed alpine skiing in the Rockies and Sierras, entered equestrian competitions with my horse, traveled internationally and was active in the romance scene. While others have found satisfaction and improved their quality of... [ more ]
Jan Dollar I am surprised you can find a surgeon that still does a w-pouch. Early reports showed improved function, but in the long term they can become problematic. They can become overstretched and difficult to empty, and are more likely to need revision surgery or intubation to empty. There have been a few members here who had w-pouches. Over time, their pouches became dysfunctional and they required surgery. I suppose those who did not have issues did not register here. Another issue is that they... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Obstruction and c diff
L Leah2noelle4
deweyj oh boy I'm sorry to hear of the rough road. NG tubes or the hose in the nose is brutal enough as it is. given the additional data that you just shared that she's passing stool it sounds like their suspicion of cDiff would be accurate. I found that the hose in the nose varied from dark bilious type extract to a diluted version of same. she's at an excellent hospital so hopefully they get her well situated and on the road to recovery soon. best wishes and hugs to you, mom and dad. [ more ]
Leah2noelle4 During the time of your elius, was the output from the NG tube really dark? We are waiting on the x rays to come back, but her output has been dark brown and thicker today. She hasn't eaten anything since Saturday. She is passing stool about 13 times a day as well. I just can't imagine what's left in there!! Any ideas? Leah [ more ]
Jan Dollar Boy, your mom has really had a lot to deal with over the past year. No doubt her resistance was low after this last set of surgeries. If this is a C. diff infection, it is likely a hospital acquired strain and they will get right on it with powerful antibiotics. Most likely it will be vancomycin, or maybe a combination. As for the obstruction, Scott is probably right that it is most likely an ileus. That just takes time. Luckily for her, she has a great daughter to be by her side. Liver... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
I thought marshmallows were my friends!
Sarah PhillipsSarah Phillips
Sarah Phillips Thanks for the replies! Thankfully a day of liquids (especially hot tea and coffee) did the trick. But it was scary enough that I will be much more careful in the future! I'm excited about the white grape juice trick...thanks! [ more ]
CeeeeCeeee I always keep a bottle of white grape juice in the refrigerator. One blockage/obstruction was enough for me! [ more ]
hattie White grape juice was my best friend when I had 2 blockages with my Jpouch. I am told that the white grape juice is more effective than the purple one for some reason. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Possible Crohn's vaccine?
J JJA
Jan Dollar Sure, a vaccine would be preferable to immune modulators or biologics, because they are targeted, except for Entyvio, a biologic which targets the gut. That said, we don't have it yet, so it it a moot point. Whether or not it seems too dangerous to be on immune modulators and biologics depends on the benefit vs. risk ratio. For me, my quality of life is vastly improved by them, so the benefit outweighs the risk. I've been on biologics for over a decade with only improved health. Jan [ more ]
Scott F Rusty, allergy shots have none of the risks of broad immune suppression, because they are specific to the particular substances causing the immune response. My point is that you'd want to induce tolerance to a specific substance if and when the immune response to that substance is causing harm. Immunosuppressants aren't specific at all. They carry risks and side effects, though they are often better than a disease out of control. [ more ]
rustyskyline "you'd want to reduce the immune response (induce "tolerance"), more like allergy shots than vaccines." So, you'd be better off with a type of immuno-suppressant? Like the biologics my GI keeps suggesting. It just seems so dangerous to purposely suppress the immune system. An intentionally acquired immune deficiency syndrome. [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Polyposis J-Pouch
T TammWell
TammWell Thank you for your replies. I have been a FAP patient since 1999 when my colon was removed. I started going to the Cleveland Clinic in 2007. They have saved my life. Continue to be monitored there. My duodenum was removed in 2007. Now they are seeing some high grade dysplasia in my stomach. So stomach removal has been discussed but not needed at this time. The surgeon has told me that he does not know what my quality of life would be. They have not removed the stomach on anyone who has no... [ more ]
Chuckus and I am somewhat of an FAP/GS guru............feel free to ask. My quality of life is excellent! [ more ]
BarryinVa ❤️
See all 4 replies...
J-Pouch ForumsPouchitis
Length of recovery on flagyl?
AH Aly Henderson
Aly Henderson I finished my round of flagyl and I am free of pouchitis for now.. It was horrible and also gave me a bad taste and nausea. Hopefully if it happens again, I can request a different antibiotic [ more ]
Pouchomarx cipro alone...flagyl gave me horrible nausea and bad metallic taste in mouth [ more ]
ks1905 Me too, Flagyl only works for me in combination with another antibiotic for me, the two best for me are Cipro and Augmentin. Flagyl never worked for me by itself. [ more ]
See all 8 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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