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J-Pouch ForumsHelp! Need advice now!
touring in Europe with Butt Burn/Itch
H hattie
CeeeeCeeee I'd take Eastern European toilets/paper any day compared to Asian "hole in the floor" toilets with a hose for washing the butt with cold water and no toilet paper whatsoever!! Just give me a toilet with a seat! I'll take care of the rest! [ more ]
TE Marie Maybe instead of taking TP with, it might work out better if you took wipes, like baby wipes with you. There are travel sizes that would fit into a pocket, purse etc. Dab with TP first and then use them. I like the kind that the labs supply when giving urine samples. Single use wipes that are also good for cleaning of cuts, scrapes etc. I usually take some extra wipes with me from the lab's bathroom. I'm going to look them up to see if available from Amazon.com or elsewhere as they are my... [ more ]
Connies Make sure you have lots of coins/local currency. Most/all of the toilets are pay toilets. I don't remember having any issues with their tp, but take some along, it couldn't hurt. My surgeon recommended Critic-Aid Clear AF antifungal ointment. It's called Clear Moisture Barrier With Antifungal. I ordered it from sweenstore.com. Also do not eat spicy food. Have a great time. I went to Prague, Budapest, Vienna, and Salzburg last fall. Beautiful cities! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gas
J Jodih
Scott F If you were farther along I'd think of SIBO, but first you might want to experiment with probiotics (perhaps VSL #3) and/or soluble fiber (e.g. Metamucil, Konsyl, Citrucel, Benefiber). These can also increase gas for some folks, in which case you might float away, but they are more likely to help, or at least do no harm. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J Pouch 8 weeks ago/diarrhea/travel
ConniesConnies
skn69 Yes, It absorbs pretty much everything...so take at a good distance from your meds. I would take it morning and night when things got bad (beware...it makes for black stools...really freaky when you don't expect it)...it absorbs the liquids in the bowel and allows things to thicken up. It is availible in most health food stores and is OTC so don't worry...you can also eat a slice of burnt toast (old grandmother's remedy) if you run out...doesn't work quite as well as the capsules but it will... [ more ]
Connies Hi skn69, Thank you for your input. I had never heard of activated charcoal. When do you take it, and how much do you take? I'll look for some in capsules tomorrow. I read that you can't take medications with it, as it absorbs them, is that right? Can you take it at night and have a diarrhea-free morning? Thanks Again, Connie [ more ]
skn69 Pack your immodium, lomotil, any stool thickeners or motility reducers that you like to use. Most French parapharmacies have a pretty good choice of OTC meds and you can go into most major pharmacies and ask for them (they do not understand the concept of OTC, even non prescripiton meds are kept behind the counter) You could eat simple meals (if you are going to restaurants) like fish and mashed or boiled potatoes...just ask them to hold the butter a bit. Rice is international and you can... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cuffitis
B bml
Scott F If you exhaust the medical options the next step is, unfortunately, surgery. Pouch advancement (hand-sewn) with mucosectomy will often solve the cuffitis problem. It most only be done by a highly experienced and skilled surgeon. I think I'd go to Cleveland Clinic if I needed that procedure. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Life of Loop Ostomy? and More Output out of Bottom
SundriesSundries
Graemek Hi guys, Has anybody any experience with passing surgical staples? I've been passing them for well over a year now, every few weeks. I get really sick, sore, urgency and really bad night sweats and then after about two days I pass 1 or 2 staples. By the the next day I'm feeling a ton better. Anybody any experience with this? [ more ]
Sundries Hi @amistem, I had problems in past when I had my jpouch with raw excoriated skin on my bottom. I had cuffitis and the skin on the outside was inflamed and irritated. The pain was 10/10. I used calmoseptine a lot as a topical. I was told that keeping it dry would help it heal, but it was almost impossible to keep dry when you are active and have pain. I took suppositories which didn't seem to fix but may have helped. Warm baths helped in the short term. I tried with bath salts in the bath... [ more ]
amistem Hi all, I was wondering if anyone had any advice or an experience with excessive anal discharge/bleeding after a temp ileostomy and j-pouch procedure? I know the doctors say it's "normal" to have some leakage... they say it's mucus or a little bit of blood. But this is more than a little bit of blood; it's quite a bit. I think the stool bypasses the loop little by little and then eventually it comes out in one big mess. The first stool is so hard that it tears the anus and that makes it... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I'm scared! Help!!!
S Sammy82
Scott F If the surgeons are convinced it's Crohn's Disease they probably won't offer a K Pouch or BCIR. [ more ]
BillV I had to have my j pouch of 30 years removed due to a recurrence of high grade dysplasia. My surgery involved pouch removal and creation of a BCIR. The surgery went well and I had a full recovery within 6 months. Although this is a somewhat difficult surgery, a surgeon with j pouch experience should provide you with good results. When faced with the decisions regarding my surgery, I definitely wanted to avoid having an ileostomy based on quality of life issues. I was especially concerned... [ more ]
Sammy82 Thanks everyone!!! I guess my main concern is that hopefully they can get the whole j pouch out without complications. But it's got to be better than the problems I'm having now, my fistulas are in my vaginal area and rectal area so I have like 3 leaking spots. Haven't been able to be intimate (had to break it off with my fiancé because he complained everyday how he wasn't having sex) (well it's freaking painful!!!!) I just want my quality of life to be better, and hopefully find someone... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Want to know what to prep for.
RichgRichg
Richg Dear CeeeCeeee; That helps. I guess like all the rest I will individually learn with the help of a nurse. The food thing is in the same category. I will be learning especially post surgery. Enjoy today. Thanks again. Rich [ more ]
CeeeeCeeee Oh, I just remembered.........I used an ostomy belt and a home made cloth pouch pinned to the inside of my undies to support the weight of my baggie as it filled up. Both of these really helped! [ more ]
CeeeeCeeee Regarding the weight question.....we all seem to differ on that one! Some of us lose weight and can't gain. Others (me) are challenged with weight gain which is difficult to lose! In my case, I finally could eat and drink whatever I wanted......and did! How often the baggie needs changing? Once again, it depends! My output of effluent was liquidy and, therefore, heavy! "Things" (the baggie) filled up quickly. I liked it liquidy because it was very easy to empty! I did so whenever it seemed... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Medical follow-up (in Montreal, Quebec)
B blooming_cy
GinLyn Oooooh, I feel your pain! First: if you can get coverage in Ontario covered, my surgical specialist in Kingston at KGH (closer than Toronto) was Dr. MacDonald and he is FABULOUS. No hesitation recommending him. Second: having moved from Kingston to an area closer to your home country (the Netherlands), and previously having moved from the US to Canada, my experience each time has been that the huisarts/family doctor/GP is the key to great care. Ask around for recommendations and work to get... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Possible Partial Obstruction. Miserable.
C Chevygirl88
Chevygirl88 That's very possible and a good point. I will look into that. Thank you! I also think inflammation is very likely. I have bleeding sometimes too. [ more ]
Spooky Glad to hear that you're on the mend now. I do wonder if this was more a case of constipation vs. actual partial obstruction. There is a difference; constipation is usually the result of very dry or thick stool. That being said, if you are constipated frequently or chronically, impacted stool can in and of itself lead to an obstruction. It sounds like you have having trouble passing stool because you output is too thick, and in that case stool softeners and laxatives can help. Magnesium... [ more ]
Chevygirl88 Liquid diet, grape juice, and stool softeners helped. Much better. I don't think I drink enough water and I'm gonna have to take stools softeners more often I think. Thank you guys! Very much appreciated! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bad Leaking At Night
Y YOUNG&LOVING
OldPoucher I've had my j-pouch for 21 years and up until about 6 months ago, I rarely had any leakage. I do tend to have pouchitis occasionally so I would say that is probably a contributor to your leakage issue. I would definitely talk to your doctor about getting a prescription of cipro - it works wonders for me. I have found that taking fiber pills about an hour before I go to bed is also very helpful. I have found Citrucel to be better than most of the others because it doesn't cause excess gas. (I... [ more ]
Lenora It has been 25 years since I had my surgery and the leaking improves over the years. But I would say the worst was in the first 4 or 5 years after. Alchohol, colored sodas and being tired and sleeping too deeply were my triggers. [ more ]
Scott F When that happens to me it's a signal of pouchitis that needs treatment. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Swelling
ConniesConnies
Connies I talked to Dr. this PM. He said I possibly had a small obstruction, and that's what I think, too. As far as the swelling goes, he said it could be related to blood pressure (it was 120/80 after I talked to him), heart, or the fact I had major surgery, and if it persists to call my internist Monday. I have a physical every Nov., and heart has always been ok, so I'm thinking it's from major surgery. I will start elevating my feet more. I have compression stockings I could wear, too. Thanks... [ more ]
Jan Dollar It is not uncommon for there to be some dependent swelling in the legs after big abdominal surgery. Takes time for the congestion in the surgical area to resolve. Also, if you are anemic, you have less ability to hold fluid in the bloodstream. The key is to keep moving when you are up (working the leg muscles moves blood through the veins). When sitting, elevate your legs to prevent more edema (swelling). On the abdominal pain, if it is sudden or severe, go to the ER. But, if it is just an... [ more ]
Connies The swelling is pretty minimal today. No Jan I didn't have any leg pain. My main concern now is abdominal soreness, almost like post laprascopic surgery. My abdomen was really bloated and sore yesterday. My back even hurt. Today it is just really sore, with no back pain. Should I be concerned and hope that this, too, will pass? I did send my Dr. a couple of messages on the portal. I hope the staff reads them before the weekend! Take Care All! Connie [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ileostomy Takedown Complications
T Tiff 06
Tiff 06 Thanks all for your advice. I actually did switch over to the Cleveland Clinic after my first set of failed J Pouch surgeries. I am a patient of Dr. Remzi's so I don't think I can get a much better doctor. I will definitely look into alternate pouch options - maybe that will work out well for me. I am currently just trying to tough it out for a few weeks to see if the combination of physical therapy and Botox will work for me before I explore other surgical options. My tolerance for being in... [ more ]
Toddi1973 Hi Tiff, I second the idea to see the specialists at Cleveland Clinic. Their colorectal surgery team down here in Florida saved me from a permanent ileostomy after my first j-pouch (done by a good surgeon but not specialist in the j-pouch department) was set two inches above the rectum, leaving me with 2 inches of Colon. Those two inches then developed high grade dysplasia and it was determined that I will need a permanent stoma. Fast forward a second and a third opinion and I ended up with... [ more ]
BillV I can relate somewhat to the decisions that you are facing since I had to have my j pouch removed due to high grade dysplasia near the sphincter. One thought is to get an evaluation of your condition at Cleveland Clinic since they specialize in dealing with pouch problems. A second thought is to research the k pouch and BCIR (similar procedures) that avoid the need for an outside bag. These procedures are not widely known and are useful for those with failed j pouches and problematic... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Butt burn be gone!
T TaniaNovak1234
Ljz Tania, i agree that Ilex paste is the best ever to prevent butt burn! I order direct from the manufacturer in US- I order a jar for home, and tubes to carry with me. Initially, I used it ever time I went to bathroom, cleaned myself with Vaseline and then a cosmetic pad, and reapply. Ise generously if I am leaving house, and it almost make a plug. Crazy- I know, but it does seal leakage. At home I use lighter coat just to protect skin, and once your healed you won't need every time, though if... [ more ]
Toddi1973 Hi Tania, I am 6 months out and I can tell you its gonna get better. But it's still a rough road. I am now at 4 good days, 3 bad days on average per week. Best advice I can give you is to stock up on "Ilex Paste". Amazon sells it. That is the only barrier cream that I have found to work for me. YMMV but I tried pretty much everything that is supposed to help with Butt Burn. But Ilex is different, it's like a latex seal for your skin. Good luck, Toddi. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rectum pain
MN marc nolan
thumprhare Do not strain. Remember you haven't used those parts in forever. You anus is hooked up and your brain, butt, and new plumbing have to figure out how to work together. I think talk to your surgeon if no issues look into pelvic floor PT because increased tone. I know my mom had an ileo for a year and when reattached had very frequent small passing for months...she had seventy five percent of her colon! Imagine us, no colon...and your anus not used for a long time. I say always make sure it... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Went to GI today
MewowMewow
Mewow Thanks Rachel. I have my ct scan tomorrow at 8:00am I am crossing my fingers for some good news. I will post the results. Sharon [ more ]
Mewow Thanks Bill, yes I agree maybe I should hold off on the dating scene for now. I have my ct scan tomorrow at 8:00am I am crossing my fingers for some good news. i will post the results. Sharon [ more ]
Mewow Originally Posted by Mewow: Originally Posted by BillV: Take some deep breaths, relax and try not to think the worst about events that may never happen. Above all, do not think of yourself as being “spoiled goods”. I had similar concerns about returning to the dating scene after being widowed, and made it a priority to present my positive points and delay bringing up my medical issues until later when the time appeared to be right (there are no rules for that, just a gut feeling – pun not... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Should I consider takedown of my ostomy for a J- pouch?
MeganEMeganE
Spooky Hi Megan, I was in a similar situation as you. I had my colon removed as an emergency. I was to ill to even consider a j-pouch at that point (the goal at the time was just "get the colon out so you don't die and we'll worry about the rest later" so there was no time for such decisions). My rectum was left intact, though it was still diseased and would have to come out eventually, so I knew I'd need more surgery regardless. But I had been so ill and had such a complicated recovery from my... [ more ]
CeeeeCeeee When it was time for my takedown (after a year with an ileostomy) I actually cried on the operating table. My surgeon told me I could change my mind and not go through with the takedown. I chose to go ahead even though I really loved my ileostomy. That was in 2002. I have never regretted my decision. I'm quite a bit older than you are but I understand the fear of trading the known for the unknown. It will be an adventure! I think you will always "wonder" if you have made the right choice if... [ more ]
Megan O I've had my pouch for 29 years. I have never had pouchitis. I can hold it fine and have never had an issue with incontinence. My pouch recovery did not take years. I was afraid too, my poor butt was just so happy to not have to poop anymore I wasn't sure about having my takedown either. Best decision ever, I have never regretted it. Decisions made out of fear aren't always the best ) Whatever you decide, best wishes! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Leakage-Women HELP PLEASE.
A ancondry
Jan Dollar I think he is assuming you cannot tell the difference from poop that has splashed to your vagina and what is coming from it. You could get a vaginal infection, but it could also be a fistula, especially if you have air coming from the vagina. Jan [ more ]
ancondry He says its Backwash??? no sure what that means [ more ]
rachelraven Definitely call tomorrow, then. It truly sounds like a potential fistula. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Standing Urgency..
U UCBloke
Mysticobra Yep... I had the same problem.. A constant urge to go and little coming out when I tried. Antispasmodic may help you. I tried it and it worked. The urges stopped almost immediately.... Well the same day. Worth a try. Good luck. Richard. [ more ]
garry2808 I get the same problem and what I have read on this site is that I may need an antispasm drug [ more ]
GinLyn Yes, I understood that. Truly, besides dietary changes and/or medicinal help to thicken up your stool and perhaps time (not sure how far out you are from surgery...), kegels are the best help. Not vaginal, of course! If you go up to the "Information" heading, the drop-down menu has a link for kegel exercises; click there and you will find detailed directions for practicing these effectively. They really can make a tremendous difference with anal control. Good luck, Gin [ more ]
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J-Pouch ForumsHelp! Need advice now!
Proctoscopy after total colectomy
B Brad9481
rachelraven My surgeon and GI basically make me NPO (nothing to eat or drink) at midnight. However, I, to be "safe" for good, clear photos take a half dose of MOM at night (15mls), and then before the test do one or two tap water enemas (I empty a Fleets and fill with warm water from the tap). That seems to be plenty, and I've always had no issues with doing things this way. [ more ]
Jan Dollar I agree, periodic scoping is routine, so don't worry about that. However, an enema the night before will do absolutely nothing as a prep. Like spitting in the ocean. Even a few hours before is worthless. My doc just has me do tap water enemas until clear before I leave the house. Not sure why your surgeon told you to never have an enema again. Seems rather extreme to me. Jan [ more ]
jeane It is routine to check a pouch (pouchoscopy) annually with biopsies if dysplasia were found in your colectomy pathology report or you had surgery due to this. Four stools a day does not sound like pouchitis to me, especially if you are not experiencing other symptoms (cramps often in waves, urgency, increased frequency, anal burning, night time leakage, sweats, fatigue). You usually know when you have pouchitis, but people can have some inflammation (very common in pouches) and be... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Butt cream
U UjohnjC
patfos Recticare lidocaine 5% I can only find it at Walgreen for about 30.00 Now it does burn but does numb Hope that helps [ more ]
katenet I love this cream and it comes in travel size packets for travel. I have tried everything and this numbs the area really nicely. http://www.amazon.com/Water-Je...words=water+burn+jel [ more ]
Jan Dollar You can try numbing hemorrhoid creams. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need answers please!
L La-Te-Da
stellababy I also was on this site and it scared me so bad I put off having a j-pouch for 2yrs DON'T put it off I have my moments of a burning butt sometimes because of loose stools but it has been so worth it in the end Sometimes when you read all the bad its scary but it will be ok promise. Originally Posted by La-Te-Da: I had an emergency coltectomy in January of this year. I have severe UC. THey left my rectum and sigmoid, which they are going to remove. I am scheduled to have the J-Pouch surgery... [ more ]
Jan Dollar Yes, uncommon, but it definitely happens. Mostly, the mesenteric reach issue is in men, who tend to have a deeper, more narrow pelvis. You stretch that mesentery too much, and ischemic complications can ensue. Ischemia= compromised blood supply, bad news for any living tissue, and can lead to a failed pouch. Jan [ more ]
Jeffsmom Jan, this is Jeffrey's problem. And he has a shorter than average small intestine. But the mesentery doesn't stretch real far either. If God forbid he needs a redo on his pouch, it won't be possible. So this one better work properly when he has his take down! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Watery diarrhea and a day in the ER
L lhh65
lhh65 Thank you for the replies. I tested negative for C.Diff. in ER, though only one sample is usually not reliable for that. GI doc yesterday not sure what's going on, and has ordered some stool tests for various things. Also, ER had started me on antibiotic Macrobid because they found infection in urine, though that's likely because of the severe diarrhea. Anyway, today has been a bit better, so maybe antibiotic is helping guts, too, and hopefully we are headed in the right direction.... [ more ]
Scott F If it persists, I'd suggest considering (and testing for) C diff. [ more ]
CeeeeCeeee I have been experiencing the same watery.....very watery......diarrhea you have. Saw my surgeon who ordered a pouchoscopy. I had it yesterday. He took several biopsies and so I'm waiting to see if it reveals anything. My symptoms are not those of pouchitis. He did see mild inflammation during the scope but that shouldn't be causing such drastic changes. A couple of weeks ago he did tell me to add Citrucel to my daily regimen. It seems to make a slight difference. My J-pouch is over 10 years... [ more ]
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J-Pouch ForumsHelp! Need advice now!
burning and itching
G gotguts
UjohnjC I am 10 week out I tried almost every cream found 1 that worked for me sensi care its a convatec product I was same way at 5-6 weeks burn and itching have gotten better [ more ]
golflady1119 Sitz baths help alot in the beginning. Also, I got a bidet sprayer attachment for the toilet (HomeDepot...$35...easily installed!). I found that early on the creams didn't work too well for me so I switched to using corn starch powder and it did the trick. I'm now at 15 weeks post-takedown and am able to just use a little A & D after each bathroom trip and I have very little burning or itching (only have it now if I eat something that causes looser stools). It will get better...7 weeks... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Does anyone take Belladonna/Opium
FrancesFrances
Bill A Hi Frances I take morphine sulphate oral liquid I have been taking for 1 year. How often do you take suppository? Does it help on spasms? [ more ]
Chrissey86 Hi Frances, I take the belladona opium suppositories. Aside from the fact that they are hard to come by, they work wonders for me! I don't know what I would do without them. I've been taking them for a year now because of terrible rectal spasms. Did you make an appointment with Dr. Bo Shen? He is amazing when it comes to pouches. I hope you start to feel better, and I hope these work for you! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stomach cramps
GS George Shaikh
George Shaikh Thanks for that info. I am seeing my GP tomorrow morning and maybe he can give me something else for pouchitis. I am already drinking a lot of water and take the psylium stuff every day. I will start taking some pouchitis meds again and be aggressive with the constipation because the cramps have taken over my life. Thanks again, George. [ more ]
Scott F You might be able to prevent the constipation side effect if you're aggressive about anticipating it. Substantially increasing your water consumption might help, or some recommend white grape juice. Stopping any bowel slowers (Imodium or Lomotil) is important. Adding psyllium might even help, though it will also bulk up the stool. Also, there are a number of other pouchitis meds that might be easier for you to tolerate. [ more ]
George Shaikh Thanks for reply. I did not include in my first post, to keep it short, that I get pouchitis off and on. Definitely have it now because of scope check and cat scan [although my G.I. says cat scan can't show it]. The problem with treating pouchitis with me is that both Flagyl and Cipro give me constipation. I have even tried half a cipro pill a day and it makes things worse. Of course I want less bowel movements but with the constipation, I get less out each time and that makes me go for a BM... [ more ]
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J-Pouch ForumsHelp! Need advice now!
3 weeks out post take down today
thumprharethumprhare
thumprhare Thanks for the input. As far as jobs....I am moving and looking for a new one as we speak and part of me says lay it all out there but I wonder if it's their business and legal or not, could prevent hiring. Thoughts? A colleague of mine said get yourself healed before searching but I have righteous student loans and three kids to take care of. On the food front, I have been bland but I have found that I really do have to drink water every 2 hours which keeps my consistency more 'consistent'. [ more ]
rachelraven I never ever used psyllium or Imodium or things like that (guess I'm lucky on that front), but I remember definitely taking it slow on the food front, once I was reconnected. I remember them saying if Metamucil didn't work, try Citrucel, but again, I didn't need it. And I cut off all pain meds before I left the hospital. I stuck with "thickening" foods, like potatoes, and bread, etc. and slowly added things to the mix. I had my takedown in mid-May, and was back to a full time semester that... [ more ]
Scott F I use the psyllium before breakfast and dinner. I found it helpful during early recovery to slowly try to increase my pouch capacity. This was described as "stretching" the pouch, though I don't know if that's literally what happens. Once you're well healed you will most likely have no urgency, and be able to put off using the toilet for quite a while, within reason. I generally use the toilet once or twice during the workday when I work at an office (beginning of day, end of day,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
questions to aka to screen to find the best doctor
P Prescott
Scott F For my nephew's J-pouch (he was 8) a pediatric surgeon and colorectal surgeon worked together in the OR. That may not be easy to arrange, but I think they were glad to learn from one another. Very few surgeons will have done large numbers of cases on children. If you can find a colorectal surgeon at a children's hospital you might hit the jackpot, but such a combination might not exist. [ more ]
Jeffsmom Prescott, definitely use a peds doctor. And ask what ever questions that YOU feel are important. My son had UC since he was 6 years old. This is your child and I believe ask away! I know surgeons can be prickly, at least ours seemed to be, but he was excellent And was very good to my son. That's all that mattered to me. But my husband asked him how many surgeries have you done, what is your failure/complication rate. He was very open with us and answered every question and did not seem to be... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Diet
ScottishRoseScottishRose
CeeeeCeeee I am one of those J-pouchers who don't stay away from culprit foods or drinks! I take precautions before eating/drinking problematic foods. Usually, all foods and drinks are pouch friendly for me but every now and then the opposite occurs. So, it is prudent for me to smear on (and a little in) a barrier cream like Calmoseptine before partaking of foods which will cause me pain. I do realize that once the problematic food/drink is out of me, the burning, etc. will be gone......like magic! It... [ more ]
Jeffsmom I would suggest staying away from ginger, tomatoes, anything citrus. My son also had problems with watermelon. Also pepper. its all trial and error. Good luck! [ more ]
rachelraven You'll not find 2 pouchers with the same triggers for food irritation. It's kind of like trial and error, and what is bothersome at first, may not be 6 months, 1 year, 6 years, 10 years etc. down the line. I could eat anything at all, with minimal or no issue, for 20 years. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pap smear abnormalities and pouches
U UKSue
Jan Dollar I agree. She probably got her wires crossed, assuming all colon cancer is the same. But, overall, any cancer diagnosis sort puts you at higher risk for another cancer, just like UC puts you at risk for other autoimmune diseases. I guess it just highlights your inate flaws. Nevertheless, it sounds like you got a first rate consultant in a quick time frame, and that is what matters! Looks like things are going in your favor so far. Jan [ more ]
thumprhare My guess the nurse may have been thinking Lynch syndrome. Your case doesn't sound like that though. Heal well and keep us updated. [ more ]
UKSue I thought I would update. I had my colposcopy and it was carried out by an extremely experienced gynae consultant. He immediately pointed out a tumour which he said will 99.9% be cancer as there isn't anything else it is likely to be. He feels it looks localised and I may get away with just a cone biopsy or hysterectomy if nothing has spread. He has said I was not at any greater risk from my previous cancer as it didn't involve the rectum and was colitis - associated. I am having an MRI on... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Did anyone have pouch removal after pouch failure? Please discuss with me, thanks...
CM Cheryl Minn
Cheryl Minn I wouldn't even consider this bc of the possibility of pouchitis. This is my problem, pouchitis, antibiotics and probiotics do not work with me. I am going for a sigminoscopy on Thursday to see if the problem is anything other than pouchitis but I doubt it. I am strongly considering removing the pouch and getting a permanent ostomy outside bag. The pain from the pouchitis is just unbearable! This whole thing has been a nightmare, I'm seeing a psychologist specializing in chronic pain yo help... [ more ]
BillV The BCIR, like the closely related kock pouch, is an internal pouch with a specially created valve that retains body waste until it can be conveniently emptied (typically 3-6 times a day) using a small plastic tube (catheter). It is created using a short section of intestine and does not require an external bag that can leak, cause skin irritation or present other quality of life issues. These two procedures are used as an alternative to an ileostomy and for those with problematic... [ more ]
Cheryl Minn What is a BCIR? Is that different from a pouch but not an ostomy bag? Thanks so much for your quick response. I just don't have the money or the health insurance to go to anyone at the Cleveland Clinic. I live in NY and went to Johns Hopkins in Md. for the rectum cuff removal and now a I have a lot of medical bill debt. I can't do it again [ more ]
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J-Pouch ForumsHelp! Need advice now!
Advice on having surgery
RichgRichg
CeeeeCeeee Partly because of my work schedule, I had my colectomy in the summer and kept my temporary ileostomy for a full year even though I could have had my takedown three months or so after my colectomy. I had the very best experience with my temporary ileostomy! Once I learned which ileostomy products worked best for me (trial and error) I could keep my "set-up" on for over a week before changing it. All of my UC symptoms were gone and I could eat/drink/do anything! I was very reluctant to give it... [ more ]
tentacle245 Should you have the surgeries and have a bag either temporary or permanent let me know i can give you some advice on best bags and companies depending on your build etc. Trust me changing the bag and ultimately finding the best products and time to change really is the hardest part in my experience and many others..more so than even the recovery. Take care. [ more ]
tentacle245 You're very welcome. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I wonder will it ever get better???
MelissaComptonMelissaCompton
Mysticobra I know we all have problems after this surgery but I think being a woman and going through this would be harder. I am not a woman by the way. One because of where our parts are located. I think or have thought of it many times after having a bad day and the mess it creates. I think am thankful that I don't have that problem... And we know what I am talking about without getting graphic... I can clean up fairly easy as compared to a woman. It just would make it that much more problematic. I... [ more ]
kta It took me a long time to heal. For at least 6 months, I lived on white flour sourdough bread, white meat chicken and peanut butter. Anything with fiber made me miserable. I finally was able to add Naked brand juices in small amounts, which is good because I felt like my body was falling apart because of the unbalanced diet. Slowly I added more variety. Now I can eat anything, but tend to avoid hot - as in spicy - foods. The only thing that worked for frequency was tincture of opium. Ten... [ more ]
ana Sometimes it takes longer time for your “new plumbing” to adjust. Be patient… I had my surgery 14 years ago and it took about 2 years before frequency subsided. At the time seemed worst than UC itself, but I did not have UC pain any more. I think for most people first 6 to 8 months nothing actually works. Flagile and Cipro did not do anything for me so I did not use much of anything in the beginning and I had to go 20-30 times a day for a long time. One thing I did I timed my food intake... [ more ]
See all 13 replies...
J-Pouch ForumsHelp! Need advice now!
Sister just diagnosed in distress
MB Mountain Baker
Mountain Baker It looks like things are a little better for my sister. She's eating some and moving some. She's been waiting for her insurance to approve a prescription for Remicade. I have been trying to convince her to try VSL#3DS since she is now diagnosed with UC. I've also been trying to get her to have someone (a surgeon and hospital) in case she doesn't get better. I went through so much I don't want the same to happen to her. Theresa [ more ]
kta This post made me remember when I was so sick and was barely able to get up. We had a kind, motherly male Rottweiler who refused to leave my side. I was the only one who could take him out to go potty. It was so hard to go out; i just wanted to curl up on the lawn and sleep, but I managed the bathroom trips. I still believe that dog prevented blood clots. Hope your sister gets relief soon. [ more ]
Mountain Baker She isn't able to do much but lie in bed. I'll suggest to my brother-in-law that she do some moving to keep from getting a clot. Thanks, Theresa [ more ]
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J-Pouch ForumsHelp! Need advice now!
OPERATION TOTAL COLECTOMY WITH JPOUCH
bederyparisbederyparis
rachelraven I had my two step surgery when I was 19. My colectomy and J pouch formation with loop ileostomy was created in January; the takedown in May. My surgeries were in 1991, so no such thing as laparascopic for me, then. But I'd say I was doing fairly well after that open surgery at 6 weeks post-op. I was off that semester in college to convalesce, but honestly, I probably could have handled something like computer work, etc. at 2 weeks... unlike some folks, I quit my pain pump in the hospital,... [ more ]
Scott F Recoveries vary a lot. Two weeks is still early days after any abdominal surgery, so many people will be using pain medication at that stage, and everyone should be taking plenty of walks during the day, and will need ready access to a bathroom. I'd advise against committing to a full work schedule (even at home) two weeks post-op, and I had the experience of trying to write a work email at that stage and realizing I couldn't complete a sentence properly on the dose of oxycontin I was... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Benefiber or Citrucel???
C Country
Scott F Benefiber didn't work for me, but Metamucil (and more recently Konsyl) have been great. [ more ]
liz11 everyone is different. my favorite combo that worked the best for me was benefiber, immodium, AND tincture of opium. What a cocktail. But it worked if I took dilengiently at specific times before eating and before sleep. meta. or citra never did squat. lomotil made me loopy and also didn't do squat. so message is.. everyone is different. Give something a fair go... and if it doesn't work try something else. good luck [ more ]
CTBarrister Metamucil rules, but for the specific issue you have, I would go with loperamide/imodium. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal spasm/extreme tightness
G Golfdrumst
GoldenGirl One thing that helped me was Proctofoam - a steroid foam that was inserted into the anus. There is another cortisone foam that is 10% steroid - can't remember the name. It is a prescription but helped with the spasms as it was an anti-inflammatory. This is a local treatment. I also would have to take Cipro at times to help decrease the inflammation which would then release the spasms. [ more ]
Mary O I don't think so, but you never know. [ more ]
jeane Thank you for the reply. Your situation sounds like it was painful and lengthy to get to where you are. I hope the solution you have found continues to work for you. I wonder if the allergies could have had anything to do with your anal stenosis as well. [ more ]
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J-Pouch ForumsHelp! Need advice now!
pouch removal planned this week - freaked out
E EP
GoldenGirl Stop the fear! I had my pouch removed in January. I am a new person! You will be so grateful that you chose to do this. It will be tough at first but so worth it. I was back at work 6 weeks after surgery and had a total abdominal hysterectomy with the pouch excision (uterus, tubes and ovaries all adhered to pouch). You will wonder why you didn't do this before. And don't fear the ileostomy - small learning curve and you will be a pro. It is so much better than a toilet!!!!! Hang in there!! [ more ]
EP Dear all, thank you so much for taking the time to share your thoughts and experience. Been a roller coaster few days!! My gastro consultant and gi surgeon have been amazing and discussed my situation with Gynae surgeon who would do any surgery. Their preferred and safest option is pouch out but they have agreed for me to have less major surgery with end ileo with a small risk of sepsis re-occurring from pouch fistula. Although small there could be hope of a redo pouch in the future - right... [ more ]
Jeffsmom EP, I agree with Sharon. I would have a GYN consult before I let anyone remove my overy. Im assuming it's your only one? I lost one of my ovaries because I had a 6 cm cyst over a tumor that was engulfing the overy. I still have my other one. But doing all this surgery at once sounds like a lot to do and a lot of possible complications. Have them peel back the cyst. It should not take very long, maybe an extra hour or so. And I'd have my GYN do it, not a colon/rectal surgeon do it. I'm very... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Anal pain
T TerriG
rachelraven Originally Posted by jeane: Rachel how often do you self dilate? Do you do this every evening? I think I also have severe inflammation going on at this time. I can barely pass anything and I feel like I have this huge tennis ball in the back end and I have tons of pain. The tailbone pain is awful too. I think the connection is so tight that is why I continually get the fissures from straining to empty pouch. In short, the entire anal canal is a mess and canasa does nothing for me. This seems... [ more ]
rachelraven Canasa is mesalamine in suppository form. I never looked awful in there, but GI put me on them thinking I may be prone to cuffitis/swelling. I'm also on Humira, but not sure where we will go with that eventually (hope was it would close the fistula; it didn't). [ more ]
TerriG Originally Posted by rachelraven: My surgeon has had to do some anal dilations for me, but he's given me the A-OK to dilate myself. I bought a dilator set online. I can't reach well with a gloved finger. His advice was to pass the one daily (fortunately I'm open enough to pass the largest one, all is open). So I basically nightly do so, then put in my Canasa suppository. So far, so good. The dilators are called Hegar dilators. This is the set I bought. (I know it says "uterine," but these... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need a new doctor pronto
RS Rebel Sue
Jeffsmom Sue, I think PA is a good idea. There is no way in hell you could get me over the Bat Bridge! I can't even get over the Delaware Memorial! If for some reason you can't find what you need or need a second opinion. New Brunswick is only an hour from Phila. Also the guy at Fox Chase I mentioned is excellent. He was our second choice from our son. Good luck! Glad you are feeling a little bit better. dianne [ more ]
Rebel Sue Thanks so much to both of you for your replies. I will be looking into the Penn doctors because that's a reasonable driving distance from me. I considered Johns Hopkins but it involves going over the Bay Bridge...while I'm sure I could do it while feeling well, not so sure about when I'm sick. Yikes. That is one scary bridge. Anyway, I went to the ER this morning because I was so tired of not having any relief or clear diagnosis of what was going on despite an MRI and a CT scan. The ER... [ more ]
Bears You mentioned located in Delaware, and Penn would be an option for you. Here are a few links to surgeons and GI docs at Penn that may be able to help. Hope you are doing better, and that you can get the medical help you need... http://www.pennmedicine.org/pr...profile/faten-aberra http://www.pennmedicine.org/pr...ofile/najjia-mahmoud http://www.pennmedicine.org/pr...rofile/joshua-bleier http://www.pennmedicine.org/pr...ofile/jeffrey-drebin... [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Left side stomach pain
S stpaulmom
Jan Dollar The fact that it is not constant is a good sign. Could be a partial obstruction working itself through, or something as simple as indigestion and gas. If it is not severe and you do not have other symptoms, such as fever or shortness of breath, you can wait and see how it goes. Even if it is a partial obstruction, you can wait and see if it resolves on its own or gets worse. I've had them take a week to resolve. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Should exploritary surgery be done?
JeffsmomJeffsmom
GinLyn Just one small experience: I agreed to exploratory surgery for "random" abdominal pain which no drugs or treatment helped; it was debilitating. All tests for pretty much everything came back negative or inconclusive. They went in and removed my gall bladder, which looked "odd"; they couldn't find anything else other than some scar tissue which needed trimming. After the surgery they cut open the gall bladder only to discover that the blasted thing was completely dead inside, slowly spreading... [ more ]
CeeeeCeeee I was on the operating table "ready" for my takedown and having a very emotional time thinking about giving up my temporary ileostomy which I had for a full year and which I had learned to live with successfully. The unknown was too much for me and I burst into tears. My surgeon knew how I felt and said, "You can still change your mind." So......if changing one's mind is an option while on the operating table, giving them notice of almost a full day should be just fine. Best wishes! [ more ]
Jan Dollar They probably have him scheduled for the next day for logistical reasons. Reserve the spot now, and you can always reschedule if needed. Nearly impossible to schedule on a day's notice without it being extremely urgent. Believe me, if you reschedule, they will fill the slot with someone on a wait list, so don't feel like you are "locked in." The folks in the Cleveland Clinic are used to patients having to travel for treatment, so they consolidate as much as they can. Most people want to go... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
Is this normal?
Laura MemLaura Mem
Laura Mem Originally Posted by Jan Dollar: Yeah, you can even have your primary doc examine you and refer you for imaging and/or to a surgeon if he feels something unusual. You need reassurance, not a dismissive attitude. But, if you feel well and everything is working right, it probably is just scar tissue. Jan Maybe scar tissue, since I have had eight major abdominal surgeries that could be a possibility! [ more ]
Jan Dollar Yeah, you can even have your primary doc examine you and refer you for imaging and/or to a surgeon if he feels something unusual. You need reassurance, not a dismissive attitude. But, if you feel well and everything is working right, it probably is just scar tissue. Jan [ more ]
MelissaCompton Hummm if you do not think it is normal I would go see another doctor. The one thing I learned through this rollercoaster is to always get another opinion and if you are not 100% sure it is right go for another. Best of Luck to you! [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Scleroderm
L LisaT
Jan Dollar I agree with Scott. Scleroderma is a rare disease that is very difficult to diagnose. Even if you have a positive test for the antibodies, you are not manifesting physical signs or symptoms. So, it is possible that sometime in the future you may develop scleroderma, but you also may never manifest the disease. You cannot diagnose it by one blood test. http://www.sclero.org/medical/...-to-z.html#diagnosis I also had chronic low back (sacroiliac) pain and foot pain (Achilles tendinitis) that... [ more ]
Scott F I think your doctor is giving you good advice. The only issue is that you *might* get sick, which is also true for everyone alive. At the same time, this *might* be nothing at all. Why jump on the scary/awful "might" instead of the positive one? [ more ]
See all 2 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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