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J-Pouch ForumsHelp! Need advice now!
Bad gas pains
Rae26Rae26
LisaTX USA I suffer from SIBO, and now take peppermint oil capsules several times a day. They really work! [ more ]
Rae26 Thank u so much Scott:-) [ more ]
Scott F There's lots of advice in prior posts. Don't eat any solids. The most common risk is dehydration, if things stop up completely or you stop drinking. If your pee starts to get dark or stops completely, you need an IV. If you start to vomit or the pain becomes extreme it's time to visit the emergency department. Good luck, Rae! [ more ]
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J-Pouch ForumsHelp! Need advice now!
New j-poucher unsure of symptoms
J J9Pouch
J9Pouch Thanks for the replies!! I finally spoke to my doctor yesterday and it sounds like pouchitis is a highly subjective, learn-as-you-go kind of deal in terms of what triggers it. I definitely don't think I actively have it, and suspect that flare was indeed cycle-related. So no antibiotics for now, but we did agree to try cipro first, flagyl second if I do have a more prolonged episode that requires treatment. [ more ]
rachelraven Had to go on birth control to chill out my ovulation and period cycles. They do affect my pouch, with increased frequency and overall just discomfort and bloating. [ more ]
thumprhare Menstrual pouchitis like symptoms here. And vsl #3 ds is prescription so Insurance may pay for it! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Crohns after jpouch
C Crystal<3
Bears Chica 76 Your situation is similar to mine, dx with UC 20 years ago, surgery the following year and the last 15 +/- years have been relatively smooth, and then problems started popping up. Tests revealed Crohns, and my doc had put me on first 6-MP and then Humira, which helped somewhat in reducing inflammation and symptoms, but not completely. Now I am trying to improve things with my diet, so far, eliminating all grains has been helpful, and when I do eat bread, I notice some bleeding. It's stil not... [ more ]
LORI726 Hi, Your stories sound similar to mine!! Had j pouch formed 1992 for UC and developed all kinds of problems about 5 years ago and re-diagnosed with Crohns. Is it really Crohn's or an older pouch problem...who knows?!? Remicade was a lifesaver for me. I loved that drug. Unfortunately, I developed lupus like antibodies about a year ago and that was the end of remicade for me. Tried Humira and cimzia but have had fistula/abscess formation on them so I am planning for perm ileostomy. I despise... [ more ]
Crystal<3 Thank you very much [ more ]
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J-Pouch ForumsHelp! Need advice now!
Contemplating Ileostomy
D DennisJ
Scott F You did try treating it with Cipro for possible pouchitis, right? Also, thickeners like psyllium or Citrucel cal help reduce leakage by making the stool less liquid. These are pretty basic, so I know you may have already tried them, of course. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Two Weeks Post Takedown: Questions and Fears
P Polaris
Jmama Hello Polaris I really appreciated reading your story. I am 2 and half months post surgery and suffering with the same symptoms you are. My G.I. Dr. and my surgeon keep telling me I should be patient, that it isn't an exact science and it can take 6 months to a year to settle down. I am so fed up that I am considering having my ileostomy again. My colitis was so severe, that the last time I was hospitalized in Sept 2011 I begged them to take my colon, which they couldn't save anyway it was... [ more ]
Jmama ❤️
SolomonSeal Polaris, I have been in your shoes not long ago. I'm sorry, but you have a lot to realize about the position you are in now. Two weeks is not nearly enough time to make any kind of judgements about your j-pouch. You can start making these assessments on a scale of months. By getting the j-pouch you have taken the plunge, and now you have to try to swim. Right now, you just have to treat your symptoms as best you can and achieve the highest quality of life you can achieve right now. I don't... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Symptoms and waiting for the doctor...
J JessGoguen
Jan Dollar I hate to say this, but your signs and symptoms sound very much like one of my inflammatory arthritis flares. I get increasing joint pain and stiffness, with associated fatigue. I feel like the air I am walking through is not air, but molasses. I get out of breath walking short distances. Sometimes it is associated with increased gut symptoms, but it is not consistent. I don't get headaches though. I already take a biologic and pain meds for my arthritis. When these flares occur I take... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Excruciating anal burning!!
G Gr8Mamacita
Jan Dollar Maybe what seemed to be hemorrhoids is really just skin tags left by old, shriveled hemorrhoids. Those can itch and burn like crazy. Jan [ more ]
KRAH I use Balneol cream..it's a cleansing cream and it seems to help. You can get it at the drugstore or online.. [ more ]
Gr8Mamacita HI All, I couldn't take it anymore...I went to my surgeon, and after internal examination, she's put me on Lomatil (2tablets,4x day), since I stopped the Imodium as per my gastrerenterologist. She said that I don't have an abcess, fissure or stricture; my j pouch looks fine. She recommended taking the Cholestyramine powder 3x day (Questran) to help firm the stool. My gastric Dr recommended a CT scan, but she doesn't feel I need one. The only weird thing is that she and her assistant said I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
POST TAKE DOWN OPERATION
bederyparisbederyparis
Jan Dollar To add to what has been said, there really is no way to expedite adaptation. your best friend is patience at this point. Do not expect improvement on a daily basis, but more by weeks and months. Most people see significant improvement in function by the 12 week mark. Some take less time, some more, but not because of something they did or didn't do. Jan [ more ]
rachelraven Pretty normal for as early on as you are. Try to defer going at times when you can to allow the pouch to stretch. I never needed Imodium or Lomotil or any sort of fiber (Metamucil made things too thick for me), but you might benefit from some treatments to either slow the gut or thicken the stool. [ more ]
DoughBoyInPHL78 hello, it takes time for the pouch to adapt and stretch to its full capacity. It is different for us all. Food wise, adaptation wise. Could be trial and error with seeing what works and what doesn't. You may wish to keep a food diary and avoid roughage to begin with, things like nuts, salads for example and stick to bland diet type foods. potatoes, rice, try a piece of cheese or two, banana's, and peanut butter, baked fish, chicken are also good starters. Protein... Also could you ask for a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cipro for HBT results.. Inderminate/Inconclusive.
DoughBoyInPHL78DoughBoyInPHL78
DoughBoyInPHL78 scott, you make valid points. I appreciate it. I take it for everything that is worth. Good words of wisdom/advice. thanks, len p.s -- was speaking out of concern and didnt mean to come off as if i'm making things up. [ more ]
Scott F There are enough real problems in our lives that it's best, I think, to avoid making ones up that don't exist. Cipro is partially processed by the liver, but it doesn't damage the liver. Processing things is the liver's job. Of course it's best to avoid medications when you don't need them. And when you do need medication, the choice of which one should be influenced by the various side effects and risks that *might* occur. And if you can, try to replace the worry (which tends to be... [ more ]
DoughBoyInPHL78 i was also given xiafaxin 500 mg for a month at a time. that was the other gastroenterologist. i took a short course of it. it seems like alot of pouchers follow a diet to help with their SIBO issues/symptoms the same goes for Pouchitis cases on here. I have to be upfront and say, i never can commit to a strict diet or adhere to a strict diet. I basiclaly eat whatever i wish. That doesn't mean, though, that i should have SIBO. I'll take the meds the doc throws at me to treat it, its just... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Dehydration
D.D.D.D.
Leeja My daughter and I use Medique Medi-lyte electrolyte pills. Very convenient and they seem to work well. Amazon has them. [ more ]
Starry01 I was told to drink G2 or powerade zero because they have the electrolytes but no/very low calories, sugar, carbs, and fat. I like plain water so I now drink the propel plain water with electrolytes. It's new and kind of high where I live so I don't Get those as much as powerade zero. They said if you drink plain water to have a salty snack along with it. [ more ]
Scott F Great news! Be careful with the magnesium, as it tends to cause diarrhea for some. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Milk Of Magnesia. How Much & when??
DoughBoyInPHL78DoughBoyInPHL78
Jan Dollar Thanks for understanding, Len. Online conversations can be difficult, and you are so right that we have no idea what someone else's mindset is. Being a nurse, I try to be frank, yet gentle, but sometimes I fail completely. This is particularly true if I am in a hurry (but no excuses). So, all I can say is that I'll try to do better, and hopefully folks will give me the same benefit of the doubt I give them. That said, every positive move you make to improve your health is worth doing. When... [ more ]
DoughBoyInPHL78 jan, thank you. i have to admit i was feeling un-easy and a bit upset concerning not knowing how you meant the burger comment. Thank you for comming back in the thread and clarifying what you exactly meant. i get easily offended sometimes. and it does not help when we are emotional already and have some health fiasco issues/family stuff. (away from the board, no one knows underneath us our personalities, how we take in what someone meant or said in context, sometimes taking it out of context... [ more ]
Jan Dollar Sorry, didn't mean to offend. I don't think I was clear enough. When I said you may as well eat a burger, I was responding to your comment about eating before taking the MOM prep; indicating that if you were not given a special prep diet for your scope, there is no reason not to eat what you want. I was not trying to be flippant about your general diet for health. I do understand how difficult it is to change old habits. Both my husband and I have been dealing with it for decades. Even if... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Vitamin deficiencies
sharon O.sharon O.
DoughBoyInPHL78 hey jan, thanks for all of your words of wisdom again, and general input on things as they are with me. i have not increased activity at all and am not moving much, honestly. Especially that we've been in a heatwave the past week again (feels like 100 degrees etc). I need to look at how much im taking in portion wise on my carbs and try and control it. I have some control of how much i put on my plate. Rationale wise, it is up to me, and only *I* can make that change, but i have to be ready... [ more ]
Jan Dollar If you have recently increased your walking activities, your extemity pain is likely related to that. Don't stop, just take time for some stretching before and after. But, if this is chronic, talk to your primary about a rheumatology consult. The number one thing you can do for your diabetes control is reduce your carb intake. This will also be good for pouch function, since many people see improved pouch function with a low carb diet. Try to keep it simple and easy. Start with eating half... [ more ]
DoughBoyInPHL78 jan, i appreciate your words of wisdom as always. I will push for vitamin check, a more thorough over see of my care in the lab department could be crucial/essential at this point. my PCP is a health center/clinic and often if i dont mention something, it can easily get swept under the carpet and i end up "under seen". she is a nice doctor, bed side manner wise, but has not been in medical care practice THAT long. 12-13 years at the most she has been a physcian. My previous PCP prior to 9... [ more ]
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J-Pouch ForumsHelp! Need advice now!
pouchoscopy results/ diversion disease?!?!?
S sally85
Jan Dollar Yeah, bladder infections are pretty common, and definitely increase your misery. Hard to sort out the sensations when everything is on fire down there! Typically you'd get urinary urgency, frequency, burning, and possibly cloudy and/or bloody urine. But you don't need all the symptoms. your resistance is low after illness and surgery, and being in the hospital is the #1 place to get an infection like this. A little blood work and urinalysis should rule it out or in. Jan [ more ]
sally85 Thanks so much jan, that's made me feel better, I'm hoping it is all down to needing to be connected up, I'm seeing my consultant on the 24th of this month fingers and toes crossed that thy can give me some answers and help! The other thing is was reading could I have a bladder infection?? My symptoms are some burning when I urinate but very slight, no urgency to urinate or feeling like j need to rush back to the loo, but I have lower abdominal and lower back pain, and rectal pressure which... [ more ]
Jan Dollar Could be diversion pouchitis or cuffitis. Diversion colitis is technically in the colon (which you don't have). So, depending on how biopsy specimens were identified, the resulting diagnosis can vary. Even without biopsy pathology reports, the doctor's dictated report could indicate diversion colitis simply as a "blanket" diagnosis, which is inflammation that is caused by fecal diversion, not that caused from an inflammatory resonse to bacteria. The difference is that diversion pouchitis is... [ more ]
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J-Pouch ForumsHelp! Need advice now!
METAMUCIL
bederyparisbederyparis
Scott F Metamucil has served me well since my surgery, but some report unaceptable increase in gas or volume of stool. [ more ]
Ikh In my experience it works if there's no pouchitis. In that case it helps in emptying, "thickening", reliefing, and slowing down the transit. If you have pouchitis or bad digestion, probably it helps but results are less evident, and probably it increases your bathroom trips. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Diarrhea not clearing up
I Ikh
Ikh Ok today I didn't take the multivitamin and surprise watery already subsided (I still have diarrhea), BUT it's also the second day of Flagyl! I was sure that I couldn't clear out this thing... I should have waited to take the Metronidazole, but I didn't tolerate the watery thing anymore... Any case MAYBE I will cautionly try to take the multivitamin again (after bloodwork) in the next day, if again diarrhea, well... And I think that it could be the magnesium. [ more ]
Ikh Ok, I'm at the second Flagyl pill (3xday), already have a very light start of headhache (as usual) and still did not notice the metal taste but it's arriving. Hope the watery stuff subsides soon. I decided to take the multivitamin after lunch so if Flagyl works, I rule out a possible mulitivitamin intollerance. BTW I'm still looking for the best mantainance treatment when off (hopefully) antibiotics: I'm planning to follow the antigluten anticasein diet for some time, then when the pouch is... [ more ]
Ikh Scott the fact that I begun today Flagyl... If I keep the multivitamins I will be sure if Metronidazole has worked or not. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Decisions....decisions
Dani-LDani-L
BillV Personally, I would opt for the j pouch since it has I high success rate and can provide a near normal lifestyle. Granted there can be complications, but that can occur with any option for your condition. You may want to look into a k pouch or BCIR that are options to an ileostomy that avoid the need for an external bag. Best of luck with whatever you decide to do. [ more ]
Dani-L Thank you all so much for taking the time to read my post and reply. I know that everyone has a different experience and will each deal with things a little differently I am just stressed even thinking about such a big life change again. I have grown completely comfortable with my ileostomy over the past 3 years and am just afraid to change something that is working for me even though I know I will have to do something to remove the remaining tissue whether I go with Jpouch or the permanent... [ more ]
Scott F Dani, there have been lots of discussions here on this topic that you might be able to find by searching. This is a fantastic place to come to find out what can go wrong, but not such a good place to hear from the folks who've done well (the large majority). They have no use for a support forum. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Achy pouch/anus after eating
L lixxie
Scott F This probably was not pouchitis at all, I suspect, but rather this problem "maturing." Good luck! [ more ]
lixxie So my 'pouchitis' seems to have cleared up on it's own (does that even happen!?) and now I have woken up with a tender pea-sized lump beneath the skin surface down there. Considering I have an existing minor RV fistula (more nuance than problem) that started with cyst-y growth, I'm not optimistic about this. Sigh. Thanks for your responses. [ more ]
Starry01 I Agree. Probably pouchitis. That's where my j pouch hurts as well. I thought I had something wrong with my tailbone at first! Lol. [ more ]
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J-Pouch ForumsHelp! Need advice now!
jan or rachel, anyone else too..
DoughBoyInPHL78DoughBoyInPHL78
CTBarrister The force-feeding of castor oil was the favored method of torturing political dissidents by the 20th century Italian fascist leader, Benito Mussolini. Today, the Italian terms manganello and olio di ricino , even used separately, still carry strong political connotations (especially the latter). These words are still used to satirize patronizing politicians, or the authors of disliked legislation. They should be used with caution in common conversation with Italians. The terms Usare l'olio... [ more ]
Scott F Jan, I'd almost succeeded in forgetting about castor oil, and now you've rekindled the memory. . I have never put anything else in my mouth as vile as that stuff! [ more ]
Jan Dollar I think that the fact that you basically are just taking a "swallow" of MOM, there isn't much point in having a bunch of flavors. It is pretty much benign tasting (like Maalox); not like that vile castor oil I used to have to take for a barium enema x-ray. Concentrated should be fine. Just don't exceed a normal dose. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Intercorse painful on the backside of vagina wall.
H Halo52208
Halo52208 Thank you guys. My husband now understands that there is days if there is too much butt pain he has to wait. Found doggy style less painful. Sometimes it's psychologIcal and he finds massaging my entire body helps relax me. You guys are so great hear. Thank you [ more ]
skn69 Hi Halo, First off, I am so sorry...this is adding insult to injury...the one thing that we should be able to finally enjoy without stress or pain and it becomes both stressful and painful instead of pleasureable...not fair. I have a k pouch (same pouch just hooked onto the abdomen with a stoma exit and a catheter for intubation and removal of gas and matter)...but a pouch is a pouch. I had a full proctorcolectomy with the bottom end closed off...35+yrs ago. Whenever you have people inside... [ more ]
TE Marie I know how you feel. I explained it to my husband a long time ago that when in j-pouch pain the last thing I feel like doing is putting anything in my vagina. Jan is right about the different angles and it might be better if you were on-top or driving, for a while. Good Luck [ more ]
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J-Pouch ForumsHelp! Need advice now!
help, Stomach cramps and little stool
N newpouch
ashish1521 I have similar issues. While i have been taking j pouch since a week, this is the first time i have cramps in my stomach. Also last night i had a burning sensation early morning. Does it has any side effects? I have been taking hot fluids only whole day as suggested by you but no relief as of now. Thanks [ more ]
dtmack Partial blockage or blockage. Try drinking warm fluids (coffee, tea, soup). Stay away from solids until it passes. Warm baths and tummy massages can help. Walk a lot. If pain gets to high or you start to vomit, head to the ER, These suck. Feel better soon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Confused, would appreciate thoughts
R robertu
rachelraven I think you'll find a wider range of BMs for our population than "4 bowel movements a day." If you make that your expectation, especially early on, you will likely be disappointed. I started at about 10+ a day, at first, with nighttime awakenings, until I deferred going and slowly the pouch could hold more and more. A "fresh" pouch, as I've been told, holds about a pint at a time. What you eat influences the number of trips, too. There's a big learning curve. I'm nearly 25 years in, and... [ more ]
Scott F Most of us here chose a J-pouch over a permanent external ileostomy. A J-pouch adds complexity and a longer list of things that can go wrong, but it has substantial advantages (when all goes well) in terms of body image and independence (e.g. from ostomy supplies). The only time an external ostomy would have been more convenient for me was when I had to deal with an asian squat toilet, which will one day make an amusing essay. Some people go directly to an external ileostomy and never look... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Access/Fistula returning?
Uc-DanielleUc-Danielle
Uc-Danielle I called my surgeon and they wanted to first put me on an antibiotic but they said no bc afraid of a blow out so its eua #14 for me ithink with probably another mushroom drain I go in the 31 I think. I hate this. It's been 4 months but at least j caught it early [ more ]
cxa Agreed. I had an abscess that began returning after 8 months, unfortunately. GP prescribed Cefspan and Flagyl 10-day course and it hammered it back down into nothing. I guess at some point it may come back again. Going to see GI about whether there are any options other than just deploying antibiotics whenever it returns. [ more ]
rachelraven I'd say a likely return, unfortunately. Best to make an appt with your GI or surgeon to try to get on top of things quickly. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Seriously thinking reversal of j-pouch
H Halo52208
Scott F Halo, I'm on 500 mg Cipro and 250 mg Flagyl, both taken once a day. I started out at higher doses and gradually lowered them until symptoms reappeared - that was the sign that I'd lowered the dose too much. [ more ]
Isbella Originally Posted by Isbella: Hi i do not understand how your pouch look like a cauliflower inside! i am scared. i had a reversal July of 2014 so far i had bowel movement problems, bleeding because i try to push when i use the bathroom. i still have trips to the bathroom and uses canasa whenever my rectum bleeds and very sore. I dont know what to eat still because whatever i eat either causes diarrhea or constipation.i bam seeing my surgeon next month after a year..Can you please reply to me... [ more ]
Isbella Originally Posted by Merle Girl: I live in Council Bluffs, Iowa. I have a great gastro Doctor in Omaha, Dr. Brian Ward. I know it may be a little bit of a drive, but he is wonderful! I also have a j pouch (for about 24 years, I am 44). I have struggled with pouchitis and many other problems along the way. I have pouch scopes done once every 1-2 years. A year ago I was diagnosed with crohn's and after trying different meds, I now will be starting on a biologic (Humira) in the next few weeks. [ more ]
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J-Pouch ForumsHelp! Need advice now!
DIARRHEA/ANTIBIOTICS STOPPED WORKING
MIKEEYMIKEEY
MIKEEY Thanks so much Fosty, will definitely look into it,not sure if I took it before, must ask my doctor, I have been on so many medications. [ more ]
Fosty Antibiotics didn't work for me so now on Entocort. I'm 1 wk in so far and no side effects. It is a milder steroid. Hopefully it will work!! [ more ]
MIKEEY Thanks for your response Pouchomarx, yes my doctor has checked me for this. Thanks again [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchoscopy
MIAcolonMIAcolon
Jan Dollar I echo Rachel's thoughts. In addition, if you are concerned about the prep, call the office back and get clarification. Be sure to have the nurse ASK the doctor to review the prep specifically for you, explaining that you have NO colon. When the doctor schedules these things, often he does not specify that you are different, so the staff hands out the standard prep instructions. So, don't let them insist that "this is what WE do and YOU must do it." Whether or not you still have some rectal... [ more ]
rachelraven Hi there. So, yeah, scopes should be part of your aftercare. However, I had mine constructed at age 19 in 1991, and I didn't get scoped for YEARS. I never had any problems for the longest time, so I just didn't bother. I was scoped around maybe 2005 or so, after a bout of likely pouchitis, and all was good. Then not again til maybe 2010. The past 3 years, I've been scoped a number of times because of strictures and fistula issues (new issues, sad face). My surgeon's prep was always nothing... [ more ]
Jeffsmom Gina, what a story! You really have been through the ringer. Pouchoscopy is a necessary evil. My son just had one 2 weeks ago at Weill Cornell. There is no prep! You don't have a large bowel. So there is nothing to prep for. The only thing Jeff had to do was not eat 8 hours before. That was it. His GI did the scope. Before that, the surgeon had done them. But he is new to all this as well. The secretary or nurse just gave you the general instructions. I would call them and double check, but... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Metamucil gas bloated
U UjohnjC
Jan Dollar I had terrible gas with Metamucil (psyllium). Citrucel (methylcellulose) was fine. But, I don't take any fiber supplements anymore. I just use Imodium. Jan [ more ]
rachelraven I never needed it, but remember them saying use Citrucel if necessary as it was supposedly less bothersome. No personal experience, but agree, try Citrucel. [ more ]
CeeeeCeeee My colorectal surgeon suggested I take Citrucel instead of Metamucil. It is wonderful! No gas!~ I really tolerated Metamucil quite well but I like Citrucel even better. Best wishes! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pressure
N New_Life
thumprhare I had pressure from pelvic floor dysfunction then later from spasms of some sort -- pelvic floor PT helped. Following takedown -- Levsin helped. I guess you need to r/o badness first (pouchitis and the like). [ more ]
CeeeeCeeee I think the pressure to which you are referring is anal pressure. The only times I experience unusual amounts/duration of anal pressure is when I have pouchitis. Once the pouchitis is eliminated, the anal pressure is gone. So, my suggestion is to have things checked out by your physician. Best wishes! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch leakage??
CC Charlie cbnice@verizon.net
Pouchomarx i had on and off back pain for a few months, then started getting electrical zaps down my legs. One morning i woke up and couldnt get out of bed. drove my ass to ER and did CT scan and discovered i had a very small leak in tip of jpouch that was leaking into my spine and i had a spinal infection. immediate diversion that night and alot of antibiotics [ more ]
Jan Dollar Yes, that fever is significant and should be reported to your doctor. jan [ more ]
maattee66 I had take down with a temporary ileostomy July 9th. I'm experience some stomach pain and aching when I get that urgency in my bottom to let stuff out. Last night I had a fever for the first time. 101.6. Not sure if I should be concerned. I've been blogging since the very first surgery in March if you are interested. Www.lifetakesguts.com [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch and gastroparesis
H Hoping
Jeffsmom Originally Posted by Jeffsmom: Roseviolet, yes I am aware, however it was our pain management team and surgeon who suggested taking these two drugs together. My son was on a boatload of narcotics and we were trying to get him off of them. Taking this combo every now and then is safe to do. That said, I didn't know it could lead to pouchitis. I take a huge amount of Motrin for severe back and foot pain as well as sinus headaches. Thank God, I have not had any issues. many days I start my day... [ more ]
roseviolet Jeff'smom, Please be aware of the facts that Motrin and all similar NSAIDS can cause nasty pouchitis with or without bleeding. It can cause GI irritation and bleeding even in those with normal intestinal health. In addition, Tylenol is toxic to the liver. Taking both drugs together could be asking for additional problems. Maybe talk to your GI doctor about using these drugs. They are over-the-counter, but that doesn't mean they are safe. Rose [ more ]
Jeffsmom Have you tried 4 Motrin with 2 Tylenol ? The 4 Motrin is the prescription strength and can be taken with Tylenol. Tylenol works on brain receopters and Motrin works at the site of the pain. Jeffrey was taking it post op and helped a lot. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal bleeding with running
S SueR
Jake McCoy I have to revive this old thread and thank everybody for the good info. RJG-Ross, I plan to get cactus paddles and try that out. I found this thread and website via a Google search. This is my first post on this site. I got back into running again after not running for about 15 years. I'm 41. I got my J-pouch 6 years ago. I bleed from from my anus occasionally when I run or bike. I think it's because running and biking are the only activities in which I push myself into a second wind. It... [ more ]
RJG-Ross I haven't been seeing any blood in well over a month now and haven't been eating nopales in a while; at least two months. The past few weeks I've been using ground flax seeds sporadically. Yet I've been running over 35 minutes 3-4 days per week during a period of very heavy work without bleeding. So, I'm thinking that the ground flax seeds healed whatever it was that caused the bleeding while running. Ground flax is much easier to ingest (2 tablespoons) in a large glass of lime or lemon... [ more ]
ChristineinDenver All of this makes me so much calmer. I have been training for a long bike ride and did two 30 mile rides over the weekend. I felt great until bedtime ~ when the bleeding started. Sounds like a combo of dehydration and perhaps the irritation from the saddle could be causing this. I have been using the ground flax with great success, but will also add some nopales to the regimen. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need surgery! Ileostomy? J pouch? Laparoscopic method?
Oozie55Oozie55
TE Marie I don't think you should try to just have it all done in one surgery. I did it in 2 steps and sometimes wish I had waited more than 8 weeks for the take down surgery. I never made it back to work but wasn't able to work before the surgeries. I have other health problems and was a grandma when I finally had the surgeries. I don't know if they will be able to do laproscopic surgery because your prior doctor messed you up during surgery and their might be too many adhesions inside you. I might... [ more ]
Laney HE IS AWFUL , PLEASE DON'T LET HIM CUT YOU [ more ]
Laney Stay away from Dr. Klas. Please stay away from Dr. Klas. He ruined my life. In fact, I think about ending my life every day after he performed unnecessary surgery on me. I went to Cleveland Clinic and Dr. Remzi and Dr. Bo Shen were shocked at the way he butchered me. He created a bend in my colon that makes it impossible for me to eliminate. He was so cocky he didn't convert to an open surgery ( which I hear he is good at) and he let his surgical assistant do most of the surgery. And .NEVER... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Incontinence
danismomdanismom
Scott F There have been a few threads about this over the years, so you might want to search the archives and read a bit more. I have been *very* hesitant to use a sleep aid, even on a red-eye flight, because of exactly this risk. Perhaps a reduced dose would strike a successful balance for him? I don't have nighttime accidents (and I sleep through most nights) unless I have untreated pouchitis, but when I was put to sleep for an upper GI scope I had a small mess. Some of the things that have worked... [ more ]
Mysticobra I am over a year and a half past original surgery and most likely unusual so don't take it to heart. I still have incontinence every night. Nothing big just seems to ooze out... Couldn't find a better word. I also have it during the day but not to the extent I do at night most likely cause I am in a deep sleep when it happens. I read here that most don't have this problem so it seems it may be something that will fix itself over time. I would hope for you and them it does. They are very... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Remicade-is my body reacting to the drug?
N Nikki9
Scott F Nikki- I honestly don't know if this could all be due to a drug reaction, but it sure might be. I think you need at least a theory about what's causing this before you get your next dose, and I'm concerned that the lab test may not actually answer the question. What has me a bit worried is that several of these symptoms sound like heart trouble. Have you had an EKG or cardiac assessment, to make sure that's okay? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal fissure- pain insane
MN marc nolan
Jan Dollar Yes. You should be able to mix them and apply at the same time. Jan [ more ]
marc nolan Thank you guys for responding, I appreciate it. Will Nifedipine be able to absorb through the Lidocaine ? I work each day now and get through it but I am pretty useless come 8pm at night trying to help my wife with the kids as pain becomes bad and I do not want to take pain killers as they only constipate me. I guess my biggest fear is that these fissures will never go away, do they ? Thank you [ more ]
Jan Dollar I should think you could use both the lidocaine and nifedipine together (I think I read articles where it was tested as a compounded combined cream). Using some barrier cream on top of that would be OK, since it would not prevent them from being absorbed. Have you asked your doctor these questions? If you have given this your best shot without relief, Botox injections are another option to consider. Oh, and don't apologize for complaining about a "minor" problem. Anal pain is probably one of... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Second Diversion - Scared Sh*tless, No Pun Intended
S See_Em_Dee
rachelraven I, too, am dealing with a fistula, a perianal one. As Jan said, yes: once that tract is there, it becomes part of you and your GI tract, and your body has no urgency to heal it, as it doesn't register a problem, once it epithelializes and becomes part of your bowel. Sad truth. Also, if it's an "IBD" fistula, a fistulectomy can be worse: healing rates are terrible on those, related to inflammation. With a J pouch, there's another strike: cutting through sphincters that have already taken a... [ more ]
See_Em_Dee Thank you. I am diverting with the intent to reverse again. I want to know if anyone's done this more than once. [ more ]
Jan Dollar I am so sorry you are dealing with this. I would love to tell you that this fistula would likely "just heal" so you can move on, but that would be probably be giving you more of a fairy tale. Diversion may not heal this thing, but it could improve your quality of life enough so that you could time to figure out your next step and start enjoying life again. Right now it seems like you are circling the drain, and you need to get out of that loop. Good luck! Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
having the reversal
Rae26Rae26
See_Em_Dee Originally Posted by jpouchmike: I notice you're from the Bronx. I had my surgeries in NY too. which hospital are you going to? I am so sorry... as you can see, it's been over a year since I last signed in. Anyway, I've been having my surgeries at Mt. Sinai. Where did you have yours? Have you been doing well? [ more ]
See_Em_Dee If you folks would be so kind as to read my posts in "Having Lots of Trouble," I'd really appreciate it. I don't want to scare this person having their takedown (though, I'm sure they've had it by now), but I'm a little over 3 months post-op and struggling quite a bit. I do not wish I had my bag back at all, but I am feeling pretty discouraged about my outcome. Any and all advice would be great. One person replied to me with useful tips that I'm already trying, but I'd love to read others'... [ more ]
Jaypea I had my j-pouch surgery and take down in November of last year. For the first 2 weeks after the surgery I experienced some complications and wished that I had my ostomy back. My bowels stopped working and I was on TPN with a PICC line and an NG tube. Once my bowels woke up I was a very happy camper indeed. I have not looked back. I LOVE my j-pouch. I am back working full-time as an RN in paediatric critical care and living life to the fullest. My bottom was extremely sore and burning for... [ more ]
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J-Pouch ForumsHelp! Need advice now!
vaginal pain with j-pouch?
T thot
thot Originally Posted by thumprhare: I am with Jan, and think you totally need to see your doc. What stage was your cancer? A CT could certainly provide reassurance against badness. yes, of course! just wondering if anyone else might have any ideas. [ more ]
thumprhare I am with Jan, and think you totally need to see your doc. What stage was your cancer? A CT could certainly provide reassurance against badness. [ more ]
thot Originally Posted by Jan Dollar: What comes to mind is first adhesions preventing normal movement of your uterus. The other thing is a possible abscess and/or sinus forming from your disconnected pouch. It could even be a fistula. Often they are not visible on vaginal exam. Have you been having any increased vaginal discharge or infection, or air expelled vaginally? That would indicate a fistula. if this keeps up ask about a CT scan. Jan thanks for the reply! no more vaginal discharge or... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can't stop leaking from my ostomy bag
CM Cheryl Minn
Cheryl Minn Thanks Megan B and everyone else for your advice, I did find the right product and no more leaking! It was actually the very first product that my ostomy nurse ordered for me with deep convection, I am so happy, my skin is good and I got my life back! [ more ]
MeganB Hi, Cheryl: Do not despair!! I had a horrible time with my ileostomy and feel that if I managed, anyone can. Unfortunately, it seems like a trial and error game. You need to find out what works for you. Are you still in the hospital? I was in the hospital for 2 weeks after my initial colectomy and j pouch construction. I had a wonderful ostomy nurse but no one could get my bag to stop leaking! Eventually, I tried it myself. It was the longest seal I got. After I was released I had on going... [ more ]
AllyKat Did you remove your pouch or just divert it? Besides this problem are you feeling better? [ more ]
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J-Pouch ForumsHelp! Need advice now!
pelvic problem
mariaemariae
mariae I have had many bouts of pouchitis tried antibiotics and VSL which of no great help but been have really bad pain in back for quite a long time I have also renal stones and stomach polyps but pain is not from this ct scan has confirmed its due to pelvis stuck to small bowel to see my consultant in a few weeks to discuss having to defunction the pouch not as sure as what to do and yes it seems its from adhesions. [ more ]
thumprhare Did they say it was scarring? I have heard of that but not specifically what you have. Are they planning to go and remove the adhesions or wait it out? [ more ]
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J-Pouch ForumsHelp! Need advice now!
How long was recovery
AllyKatAllyKat
AllyKat My doctor didn't feel my body was up to a big surgery at this time. Omg I hope I don't have to do this again. [ more ]
Fosty Ally- why didn't they remove pouch at the same time? I'm your age as well and having permanent Illeo plus pouch removal together. I have the best surgeon and hospital in Canada and she only does it this way in case pouch causes problems when left in. I hope all will be well with you soon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
what's wrong with me? leaking, pains, exhausted...
B Bee26840
Scott F I'm sorry you're feeling so crappy, Bee. Four days is short enough that it could be all kinds of things. My first guess would be a garden-variety GI bug, and it may get better on its own before your appointment. Stay hydrated to avoid the ED, if possible. It would be unusual, I think, for stress and sleep disruption to do what you're describing, but they don't help, of course. If it persists longer than a week or so then other causes start to seem more likely to me (e.g. C. diff). Good luck! [ more ]
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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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