Calmo
Visbiome

Skip to main content

Topics

Sorted by last update

J-Pouch ForumsPouchitis
Dr. Shen's diet advice to me...
K Krazy1
napleseyes I lift weights and do 500lb tire flipping exercise for 7 years with my J..havent had a staple shoot out yet but dont wanna jinx myself [ more ]
MarkGregory According to what I have read from the BTVC book, fruits and honey are single sugars, and absorbed very quickly without having time to feed the bad bugs. (In most people, but not all) But table sugar is a double sugar, starches are a complex sugar, requiring the bacteria to break them down, and potentially providing a wonderful food source for the bad bacteria, and causing SIBO. If you can tolerate fruits and honey fine, then it is important to eat them in between meals, so they are digested... [ more ]
Rebe0505 those of you on low,no sugar as per shen..i eliminate sugar outside of fruit...taking my clue from "the special carb diet"for colitus chrohns etc..elaine gottshel..bad bacteria is what she tries to have you avoid but she does allow fruit because it does not increase bad bacteria according to her..i also now eliminated all starchy carbs period..and manage ok but eat at least three fruit a day..hmmm there is a contridiction here..any thoughts on that anyone? [ more ]
See all 43 replies...
J-Pouch ForumsGeneral Discussion
MRI Results and DX from hip pain
P PDXDavid
BillV I can sympathize with you on what you are facing with your pouch. There are some good doctors who specialize in pouch and related problems and you are taking an appropriate step in seeking their opinion. I am sure you want to keep your pouch if it is medically possible to do so. If it turns out otherwise, there are two alternative procedures that would not require an external bag: the Koch pouch and the BCIR (Barnett Continent Intestinal Reservoir). There is lots of information about both... [ more ]
13 Years & Counting Oh My Gosh!! I just came across this...I've been having pain in my hip & lower back for a little over a year. I was told it was bursitis. It's painful, but I'm not bedridden & I work out almost every day even with the pain. (Spin, Kickbox, Pilates, Yoga)Shortly after that I had my first obstruction ever. (Have had well functioning J-Pouch since 1999.)Have had 2 others since, & I'm now being told the stricture I have cannot be balloon dilated due to the scar tissue that's right... [ more ]
Jan Dollar I would think you'd still be a candidate for biologics even if you failed Remicade for UC. Even though it is associated with UC, the sacroiliitis of enteropathic arthritis is a separate disease, sort of like liver disease that you can get associated with UC. My rheumy skipped the Remicade treatment, which I am glad. The last thing I wanted was to have to go in for infusions every month! Home injections are sooooo much easier. I still have to do monitoring blood work every 3 months. The hope... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Urinary Incontinence Years Post Surgery...anyone experiencing this?
LG LB Greenville
phonix2g My bladder was nicked during surgery my surgeon told me while recovering to prepare me. He actually had to sew it up nice and tight to avoid any major issues. I had an extremely difficult time peeing and actually had to sit on the toilet and bend as much forward as I could to empty it. I also figured it was very difficult due to all the pain meds I was on. When I would go also and empty fully it seemed like my bladder had a lot of scar tissue around it connecting to my pelvis and I could see... [ more ]
shadoe-d i had my original surgery for FAP twenty years ago. recently i was diagnosed with a kidney issue. stents to open up my ureter but now Ive got retention. I have never been able to void urine without stool. now it feels as if my pouch is sitting on my bladder. i go back to my Dr for my upper lower in Jan as well as my urologist in Jan for a urodynamic test and a renal function. in the mean time i feel like i have to urinate all the time. [ more ]
vanessavy Well yes I have had everything you have mentioned and more. I had have 2 hydros done that helped but doctors don't recommend doing them since it can do damage. Maybe ask about taking Elavil, it is an antidepressnat that is used to treat bladder issues in a low dose, about 10mg. I take Bentyl now for my gas/pouch and it has helped my bladder flares at times too since it is an antispadmodic. Stay away from canberries and anything too acidic that can do a number on the bladder. Also a low... [ more ]
See all 13 replies...
J-Pouch ForumsPouchitis
Entocort for Pouchitis?
M mom2panda
AllyKat Lucky me, I will pick up my prescription tomorrow and not looking forward to starting this. Had a nice 4 year remission on short course of remi but had reactions to that and besides once you stop you can't restart. [ more ]
K_InTheFlo I just started Endocort yesterday and last night my left forearm was itching a lot and this morning. Looked it up and itching is not a good sign. Will call the GI practice today. I'm bummed if i have to go off this. I'm trying NOT to go on Biologics. [ more ]
Allin Well that was short lived. Bad night dont know what happend Monday night i sleep and last night hellllll. See what tonight brings going to limit intake. [ more ]
See all 19 replies...
J-Pouch ForumsGeneral Discussion
bidet advice
S Salmak
RickT I have a low-end brand that uses the same design as the Toto washlet models. I received it as a wedding present (unwrapped and on the dance floor), so I don't know the cost. I'm guessing its cheap, but it works great. I think you'd be pretty happy with any model, it just depends on how much you want to spend. I've had the pleasure of trying one of the top of the line models, it multiple settings, hot water, and a blow dryer. The blow dryer was a bit overkill, but having warm water was great. [ more ]
kta I too do not know what I'd do without my bidet. I have a Toto. I've had it for almost 10 years. It needed to be sent to the company for repairs once because the wand would not come out to spray. We have hard water and it had buildup in quite a few places. It came back cleaned of all that, working and is still going strong. After takedown, the bb was miserable. I was hopping in the shower whenever I could which was a pain in the butt. I know I would still have issues with it if I didn't have... [ more ]
CeeeeCeeee I've had my TOTO Washlet (bidet) since I had my takedown in 2002. I miss it when I'm away from home but not badly enough to carry a portable bidet. I did buy one at the same time I bought the regular model. It soon became a bother because it seems heavy to me to be carrying around and a bother to fill with warm water before using it in a public bathroom and cleaning it/drying it after. It is sitting in my drawer as we speak. If I really wanted to use a portable device badly enough I'd get... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Oral anti-fungals
P Pluot
Rebe0505 so strange all our differences with various drugs..your issue with keflex..i have none on it right now but cannot take flagl myself get very sick to stomach.. point being when we listen to each other we have to remember there is a very wide descrepancy between people..what may work for one will not work for another and visa versa..that includes foods to eat as well [ more ]
phonix2g I have been prescribed Diflucan numerous times due to a fungal infection I picked up in the process of having my surgeries. I never had any side effects and believe it did its job because the infection went away and didn't come back. I was also precribed Keflex when I had moles removed at the dermotologist as a precautionary. I took the Keflex for about 3 days with terrible side effects such as stomach pains and cramps, a continuous urgency to empty my bowels, burping gas that had an awful... [ more ]
Rebe0505 it is ironic this topic came up just when i got it..i have ongoing problems first diagnosed as chronic pouchitis now dr. shen says bacteria overgrowth..either way only thing was working was rotating antibiotics..doing it for 5 years..lately i wrote dr. shen that my last one augmentin only lasted a week and my next one up keflex may not be working as well as it could or should..anyway he writes me back to take antifungi diflucan for 7 days...stop antibiotics..this kind of came out of left... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
SCD vs. GAPS vs. Paleo
M MarkGregory
Rebe0505 i think the scd diet is doable based on the three..elaine gottshell gives scientific reason fruit sugar ok..same with the dairy its limited to anything where the lactose is either removed for example the yoghurt is only her home made one because it ferments 24 hours..i have heard that jpouchers like this diet.. i have just started to get really serious with diet as i have bacterial issue according to dr. shen so my diet is pretty much like scd..except i do not make homemade yoghurt use greek... [ more ]
vanessavy I follow Paleo. Been on it far before I got my pouch since I am a crossfiter and people preach that stuff, as annoying as it is it has made a difference. I modify it a lot and cut out fruit since that is basically still a sugar in the body. They say low FODMAP at cleveland clinic since they don't really follow any certain name of a diet to look like wackos I am assuming. My problem with SCD is the amount of cheese and dairy in it. If I do eat cheese I use goat since the body can digest that... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
EUA # oh hell I've lost count now.
Uc-DanielleUc-Danielle
BillV I am glad to know that your surgeon is using a non-surgical treatment to correct the problem with your pouch. In my way of thinking, one should take advantage of other treatments before committing to removal of their J pouch. In my case, my pouch could not be saved due to dysplasia that would turn to cancer in a relatively short time. In mentioning an ileostomy, your surgeon is preparing you for the possibility that your J pouch may have to be removed, or the possibility of a temporary... [ more ]
n/a Interested too, Danielle - does he think a permanent ostomy is the solution to your fistula woes? Or is letting the fistula "rest" the goal? These fistulas are SUCH a drag.... Hey, 3 Ohioans! [ more ]
ActiveUC'er I am so sorry you've had such a rough road. When he says "ostomy" does he mean a temporary one or a permanent one. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Working as Cabin Crew w/ J-Pouch?
E Elliott
vanessavy I don't personally disclose my disease and surgeries to everyone, if I can do the job I can do the job and not everyone understands having a colon removed. Medical should be easy if it is like the US. Here the US coastguard issue the maritime license and the medical here is just a regular check up done by a GP. There is no PT test or anything. My husband is getting his certificates and license now for all of this to work in the Gulf. If your air certs are just a simple medical you could be... [ more ]
suebear I believe the crew shares the bathroom with the public. I've flown many long haul flights with a jpouch and I know I could work as a flight attendant with my jpouch. But I don't know if there are any special considerations the airlines might have with us for employment? I do know someone who flies US routes and is a flight attendant. I could put you two in touch if you PM me your email address. Sue [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
No antibiotics--First time in two years
John95John95
elsmom ❤️
jeane Thank you for all of this information!! I am trying the diet modification as of today as I had myself a great cry this morn with two days of back to back agonizing cramps and multiple trips to the bathroom. I am really at my wits end with my chronic anal issues and pouchitis and I want to get off as much medication as I can and if not, I am ready to remove the pouch. It has been 2.5 VERY long and tiring years of constant issues for me. This is my last ditch effort as I really don't want to... [ more ]
MarkGregory I have been on a no sugar diet for years, but still ate quite a bit of starches in the form of rice. Still i kept having problems with pouchitis, and SIBO. So i have recently went on the GAPS diet, and so far the results have been amazing for me. People with any digestive system problem owe it to themselves to check out about GAPS. There are many great youtube videos all about it, and why it works. Dr. Natasha Campbell-McBride is the founder of it. [ more ]
See all 14 replies...
J-Pouch ForumsGeneral Discussion
Help please need advice on surgery
F Fruitloop
Tana Hi Pamela, I have had my J-Pouch for over 22yrs and like anything else whether its an engine or a jpouch sometimes you need a good mechanic to service it. If you can avoid the stoma at all costs I would. I would suggest seeking out and do your research on the best surgeons in your country. I'm travelling 15oo miles back to Cleveland to have my engine maker Dr. Strong help me fix mine. I think after all you've been thru it might be worth having a second opinion!!!You're Qol is worth every... [ more ]
BillV Pamela, you may wish to get a second opinion before having your J pouch removed. In my case, removal of the pouch was necessary for medical reasons, but I had it for 30 years. An alternative to a permanent ileostomy is a K pouch, which I believe is available in the UK and avoids the need for an external ostomy bag. There is a lot of information about this procedure on the internet. I had a similar procedure, a BCIR, which is done at two places in the USA and one in Canada. My surgery went... [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
Pepto Bismo
V vince
Rebe0505 shoot i just started adding it to my keflex to male it work better..i was taking two about three or 4 times a day..now i read this about the poisoning yikes! i was thinking even of trying to rotate it with antibiotics..seems there is a damned if you do damned if you don`t with everything!!! maybe i will just do it to get through thanksgiving(going away) with my keflex(sigh!) [ more ]
Jan Dollar I really don't know, but think that it is rare enough that it is an individual tolerance sort of thing. What I mean is that perhaps there are a few that tend to absorb more than others, otherwise, you would find a lot of documentation in the literature. This is a drug that is used a lot as an OTC drug. Granted, most people do not take it chronically. But, if you do take it chronically, then it is just smart to be alert for any changes in your cognitive ability, personality (irritability,... [ more ]
clz81 Jan, is this something that be pulled for lab work each year during routine screening? I also do wonder if the tablets make a difference. [ more ]
See all 12 replies...
J-Pouch ForumsPouchitis
Immune to antibiotics
napleseyesnapleseyes
Rebe0505 jean how much pepto bismo a day would you take..? [ more ]
napleseyes I take Lomotil..but is pepto bismol better to take? yes I can ho;d the enimas in..its in remission right now but the problem is the Cort enima..I take 30ml twice a day but i may have gotten immune to 30ml..the pouch starts to throb in pain but if i take 35-40ml i feel fine..but my Dr wont up my dose of the Cort enima..wants me to have surgery instead..i wont do the ostomy. [ more ]
jeane Are you able to hold the enemas in with pouchitis? Does your regime keep the pouchitis under control? Have you tried pepto bismal? I get some relief with this to get breaks from Cipro. My pouchitis is pretty chronic also. I would be skeptical of creating another jpouch as I would bet you would still get pouchitis . Also small doses of 6 mp like 50 mg do help people with chronic pouchitis without the major concern of side effects but I understand your hesitation. I was reluctant to take it... [ more ]
See all 6 replies...
J-Pouch ForumsOstomy & Skin
itchy, smelly, and losing more weight
DH Donna H
liz11 hot liquids can definitely make fluids gush out of you. So tea... maybe cut back on that for awhile. Also plain water can make things gush. Try drinking only a true WHO electroylyte solution all day every day for a week or so and see if things change for you. Also try to reduce your sugar intake, that may help with the gas situation. [ more ]
JillM The gas gets better over time. THe liquid issue gets better too, but you might want to try Immodium. Take two at the same time each day for a few weeks. You will find that things thicken up and slow down. [ more ]
Donna H Hmmmm, let me look into that. I don't know why I have gas since I am still so careful in what I eat. And, btw, do liquids just flow out of you after you drink them? I had a lot of water yesterday before some blood work. I had to empty every half hour for a couple of hours and it was pure liquid. It sure cleans the pouch however. I love tea, either herbal or decaf, and that stuff runs through me too. Perhaps it's just because I am 3 1/2 weeks post op??? There's still lots of stuff to figure... [ more ]
See all 22 replies...
J-Pouch ForumsGeneral Discussion
Nervous about appt
Uc-DanielleUc-Danielle
liz11 hey danielle, if you have an official appt time with remzi, vicki usually doesn't interfere too much. In fact, she becomes quite the wallflower when remzi is in the room. So don't think about her. Just focus on what you need to ask remzi. good luck. I'm seeing him in one week. [ more ]
mgmt10 Just wanted to wish you good luck with your appt. Hope you can get a plan in place. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Seeing Dr. Remzi this month for the fistula
Uc-DanielleUc-Danielle
Uc-Danielle dawn58 seriously?!? I don't know what remzi will say tomorrow. I'm under pain management right now bc it is just a terrible pain in the ass (literally) I just don't know. [ more ]
dawn58 Been dealing with a fistula for almost seven years now. I have had over 30 surgeries to repair. Nothing has helped. I don't know what to do anymore. It's totally mind boggling. I have been to Remzi and Milsom. I am still under the care of both of them. I am at a total loss. [ more ]
liz11 Hey danielle. nice to hear from you. Glad you got the pain under control but so sorry you still have that fistula. Hope Remzi can come up with a plan for you. I'm actually driving to CC today to pain management for another nerve block and I'm seeing Remzi the week after you see him. [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Anucort/cortisone/steroids bad for fistulas?
DB Dan B
Uc-Danielle What surgery did you have for the fistula? I have been dealing with this thing since September of 2012 and it's been hell!!!!! I've had 1 mushroom drain 2 cutting seton and numerous euas. I am seeing my surgeon tomorrow first time since April. Hoping he will do an eua to see if it's any better. [ more ]
Jan Dollar There are oral mesalamine drugs that are generic. Sulfasalazine (if you tolerate it), Colazal, and even Asacol (but I am not sure there is any generic being made of that). My son uses generic Colazal (balsalazide). It does not contain sulfa, even though it sounds like it does. I think it would be worth a try, since Canasa is not in your budget. I have been on sulfasalazine for many years, and just use Canasa for the occasional flare. During open enrollment perhaps you can change plans that... [ more ]
Scott F Dan- I'm not sure why you tie Remicade to single-payer coverage (which doesn't seem politically feasible). I'd expect all (or at least most) of the plans that qualify for the Affordable Care Act to cover Remicade (and Canasa). If I'm correct you should be able to try these treatments effective January 1, assumiing you sign up for a plan. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Skin around loop lieostomy
P PHedges
ActiveUC'er Wow Hedges. That's not similar to my journey, that's twice as rough as my journey . I know that feeling of not being able to move and it is rough. I couldn't talk either. For some reason when I was in ICU, one of the worst things was having them put 20 million blankets on me when I was so incredibly hot (no fever, just hot)! I couldn't move them off of me. Rehab is no cake walk either. I hope one of the suggestions work for you. [ more ]
Army wife PHedges, Do you have an active ostomy support group in you area? I know there is one in my area. Call a local hospital and see if they have one. You could probably find some good local support there. Do you qualify for home health? They sent out a nurse to help me with the problem and helped mr get the right product. [ more ]
PHedges ActiveUCer, yes I go to the CC as much as I can, however, the ride there is quite expensive and I can't drive yet, my UC battle is similar to yours, I spent 4 months and 2 days hospitalized, 47 days in ICU, 6 days in a coma and lost my entire body movement from the neck down, yes I walk now, after 3 months of rehab and 3 hrs daily of physical therapy thus the reason why it isn't so easy to go visit the nurse as frequent as I wish, needless to say the cost. I have to "maximize" my resources... [ more ]
See all 14 replies...
J-Pouch ForumsK-Pouch Korner
Pregnant with k-pouch or BCIR
G Gitika
skn69 Wow! I am impressed! Lawyer, 3 pregnancies and an indwelling cath for the duration! Ok, hats off! So nice to hear this kind of news... Sharon [ more ]
lcolche Hi, yes; I am the one: I carried 3 pregnancies and had 3 healthy babies after the K pouch. However, I had to keep the catheter inserted and taped in place after the first few months of each pregnancy. Although that was uncomfortable (I worked as an attorney during all those pregnancies and had that catheter sticking out under my clothing and tried my best to mask it with my clothing but was very self-conscious about it), it wasn't a problem. My understanding from my K-pouch surgeon had been... [ more ]
JaniceM Hi....there is a KPer who had children during her pregnancy and needed to keep the constant cath inserted. Since I had my KP at 19, the surgeon said if I were to get pregnant, I'd have set up the constant cath as the uterus pushes the positioning of the pouch temporarily. It shouldn't be a problem after the baby is born. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Pain with bowel movements
megen18megen18
TE Marie Maybe it's extra gas caused by the VSL. Gas rises in the body just like every where else. I promote the passing of gas and maybe if you do so you won't have as much pain. The downward dog yoga pose, get on all fours then drop head and front arms down to floor leaving your butt up in the air, gravity rises. Some people lay on their stomachs. You can also bend over while sitting on the stool, this helps when already on it. I hope all you need is to find a way to pass gas and the pain will subside! [ more ]
Rebe0505 maybe stupid question but have you ruled out form of pouchitis..having it scoped? some people develop pouchitis after years of good pouch functioning.. [ more ]
PDXDavid Hi Megan, It's good that your pouch gave you 4 years of service before giving you issues. I think that gives you a head start in keeping in front of big problems, but maybe not without a bump in the road. Here's to hoping this bump in the road is small and such bumps are infrequent for you! The cause of pain can be varied. The pouch itself could be irritated for various reasons, pretty much all of which involve discomfort. Narrowing strictures at the entrance or exit of the pouch can develop... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
emergency scopes today, upper endo and pouchoscopy/up the ileum
L Len1978
TE Marie Sorry to hear you have cuffitis and Irritable Pouchitis Syndrome (IPS) I have them both, chronically, too. I started a thread on here, I think in the General section, about "IPS vs Pouchitis". In that thread I've posted 3 links to articles/studies about IPS, and other j-pouch problems, in different posts with in the thread. You might want to read the thread and look at the article links too. I'm under a treatment plan for IPS that includes an antibiotic but it's not the only treatment for... [ more ]
vanessavy I have a good GI here that specializes in bile duct so I go to him since that is my main issue now, the duodenum. I just grew my first stomach polyp! Talk about fun times.. not. I am moving on Nov 30th and would love to meet up! I never met anyone with FAP in person. I think it is estimated 0.001% of the population has it so people I do meet are online and usually far. I have been to Hopkins but never to see a GI. The GI I have here at Georgetown is Dr. Al Kawas in case DC is an option for... [ more ]
Len1978 hi vanessa, nice to meet you - i have used to read the board alot as a guest without registering. ive been around here for years reading. thanks for the information you shared with me. i see dr paul berenbaum gastroentologist. he is very thorough and you will wait in his office an hour or more sometimes when it is busy or he is backed up/running late. he found my fathers colorectal cancer years ago, 23 years ago atleast. i dont mind meeting up sometime with you once you have moved over to... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Why does NO ONE consider this?
P Pkitty
Jan Dollar The reason diversion can cause tempoary remission is because you are altering the environment in the colon. Remember, the autoimmune response is not just the immune system randomly attacking the colon, but a cascade of inflammatory reactions in response to a trigger. Often, this is bacteria, or the alteration of it (such as in the use of antibiotics). It does not mean diversion WILL work, but that it MAY work. It is completely appropriate to be diverted to figure out the next step. Who... [ more ]
Pkitty Yes Jan I thought for sure Crohns too and still likely have something towards Crohns on the IBD spectrum. But my GI, who is regarded as the top IBD GI doctor in the world, said he would still call it UC if there are only 1 or 2 granulomas. So, I don't know. As for your comment that doctors are giving the response with the best odds of working, I agree. But, they are saying that most patients who disconnect, the disease settles down. I just wonder why the disease settles down when they... [ more ]
mgmt10 I read through this whole thread and it sounds like a big fat "what if" to me. If you are willing to go thru a surgery and have an ileo, in my opinion you may as well go all the way and get yourself a j pouch and be done with the disease. On the other hand you don't know if you have CD so I would do everything you can to rule that out. I went thru the same thing with the doctors saying they thought it could be Crohn's. I had all the tests run that were available and in the end I indeed did... [ more ]
See all 21 replies...
J-Pouch ForumsMen's Health
The Ideal Diet?
Uncle PocketsUncle Pockets
vanessavy I do my best on a Paleo diet. No carbs like bread, no sugar and no dairy and little fruit since fruit is also sugar in the body (only some goat milk/cheese if crave it). My GI put me on a similar diet called low FODMAP. [ more ]
skn69 Hi Uncle pockets, Question: What is your output like now and do you want it to change or stay the same? That is the big question. Next, what do you like or not to eat and how do you react to things like raw or cooked veggies and fruits? I am kind of math oriented so I like things that add up... Carb meal + Carb meal= thicker output and weight gain Protien meal + Protien meal = thinner output and weight loss Green veggies (well chewed) should be fine but it they give you the runs, cut the... [ more ]
See all 2 replies...
J-Pouch ForumsK-Pouch Korner
? leaking valve
C camy
JaniceM interesting...I have had to bear down using my abdominal muscles for 34 yrs. My surgeon said no problem. He said it would be the same to the valve doing sit ups or exercise and not to worry. Having the cath inserted protects it anyway. Unchewed food or pills, etc will often pop out of stoma sometimes days or weeks later. To help gets whats trapped inbetween the valve and stoma as you pull out cath (or if you've had to take cath out and reinsert it), after the final interbation, I take tissue... [ more ]
skn69 Pretty much the only 'no-no' that Dr C told me was to never intubate without lube...other than that I irrigate regularly if the output is thick and I pull out the tube and clear the holes if they are stuffed with stuff...I am a really bad chewer so it happens often and that causes my valve to get damp afterwards... I know that you should not be to rough with it, don't yank or pull if it gets stuck inside and never force the tube in if it won't go... Sharon [ more ]
Dixie from Saskatchewan I asked my surgeon after my latest revision, when he was with me when the indwelling surgery tube was taken out & while I was putting my normal catheter in to intubate for the first time if it hurt the valve to bear down (grunt) to get the contents out of the pouch & he told me it was okay to do this & it wouldn't cause damage to the valve. I had always wondered about that in the past. I'd be interested in hearing what other Koch pouch users have been told about this, as Bodoni... [ more ]
See all 9 replies...
J-Pouch ForumsK-Pouch Korner
Kock Pouch around the corner
DH Donna H
JaniceM Oh Donna, I'm very sorry to hear Dr Worsey couldn't perform the KP. I do like the fact that he didn't attempt something he didn't feel he could do successfully. I am seeing Dr Kaiser at USC in Dec as a 2nd opinion after I see Dr Worsey. I'll let you know what I think about him and his exp. It looks good on paper. Although I beleive the T pouch is struggling, but he does KPs. There is a great deal of support for the ileostomy.....I wish you the best. Janice [ more ]
vanessavy Are they testing you for C.diff or small bowel bacteria overgrowth? Those have a potent smell for sure.But I understand completely. I wore a leg bag for a few weeks and swore I smelled like a moving dumpster. It was just in my nose all the time. I was turned down based on not having jpouch issues actually by Remzi's dept. But I will say if you want to see Remzi book it now. The wait is about 6 months to see him. [ more ]
Donna H I am not sure what the odds are about a successful Kock Pouch with the issues I have but I feel like the Cleveland Clinic would be the first place for me to check out. I am sure they have dealt with circumstances like mine- adhesions aren't that rare. It does scare me that the CC rejected both of you, Vanessa and Billy. It seems like that is a GO TO place for so many and then you hear about cases like you. I do know that there are many successful stories too. My current surgeon thinks the... [ more ]
See all 23 replies...
J-Pouch ForumsK-Pouch Korner
what is the difference k or j pouch
F foxwoods777
JaniceM A "tube" is actually a medina or marlen catheter. Like the urostomy ones but size 30. To empty the internal reservoir, the catheter is inserted into a stoma (it's flat on abdomen) while sitting on the toilet or standing over a sink or something similiar. The poo filters through from the pouch, through the catheter into the toilet, etc. It does not hurt. Since the stoma is active tissue, you may need to keep a pad over it for mucous wetness. [ more ]
Jan Dollar A j-pouch is an ileal pouch connected to the anus. You need to have your anus, sphincters, and several inches of your rectum left in order to have this procedure. The Kock pouch (k-pouch) is a continent reservoir ileostomy. The BCIR is also a continent ileostomy, but with a different valve system. For both of these, an external appliance is not used. They are emptied periodically using a tube. Jan [ more ]
skn69 Hi Foxwoods, First off, so sorry for what you are going through with your ileo...it sucks when it doesn't work properly... So here is my best response to your question: The original pouch was the k pouch which was a continent ileal reservoir tacked onto the abdominal wall with a hole for the valve and a stoma on the outside. You use a catheter or tube (reusable til it breaks)+lube to empty out the pouch using gravity + irrigating it with water when the contents become too thick. pluses? [ more ]
See all 3 replies...
J-Pouch ForumsK-Pouch Korner
STONES IN POUCH
D dpol
JaniceM Fred, I have had my pouch since 1980. If I can't get gas out, while the catheter is inserted and I'm sitting on the toilet, I move my body positions (bending down, side to side, etc) and I've ALWAYs have had bear down using my abdominal muscles to get gas out. And, of course, irrigating will help move gas too even is poo is thin. [ more ]
Fred25 For the past three months I have had multiple elongated, black stones in my pouch. My Doctor had them tested and they were made of calcium and magnesium. It is quite scary because lots of times I have to twist and turn and push and pull the catheter several times before I can get the stone out, without damaging the valve. The stone invariably sticks out of one of the inlets of my catheter a FR28. I can no longer get a FR30 into my pouch. And for the past 3 weeks I have had a problem getting... [ more ]
lesrich1 the assumption is; the stones didn't begin as large.The grew to that size and the surgeon nor I didn't want to risk them getting bigger. The pain did go away. I was taking medication for osteoporosis for sometime at the time the stones were discovered. I am convinced that the stones were an accumulation of undissolved medication in the pouch. [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Liquid magnesium supplements
D dpm64
TE Marie For my Fibromyalgia I take a product called Fibro Malic twice daily that comes in capsule form and contains, along with other ingredients Magnesium Hydroxide 600mg yielding 172mg elemental Magnesium daily, which is 150% of the daily value. I split this into 2 doses with food. It hasn't caused me any problems. It looks like this is less than half of the dose you are considering. I take it with food because the other main ingredient in the supplement is Malic Acid. Good Luck, I hope it works... [ more ]
Scott F One thing to consider is that *some* laxative effects operate strictly on the colon, so we could be "immune" to that. I don't know if Magnesium Citrate would work that way, but colchicine (another substance often dosed to a diarrhea endpoint) doesn't seem to loosen me at all. [ more ]
skn69 I've been using magnesium is both liquid form (they come in drop or ampules here) as well as in a mix with B6 or cal-mag-B6 to help with the 'nerves'...it is said to help the 'jumpy eye' a sort of tick by the outside of one of my eyes, sleep patterns, shakes and a whole lot of other nerve related problems...here they prescribe it every winter to a lot of patients for that exact reason...and yes, it does work quite well on those mild disorders... I know when I need more when the tick comes... [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
NYC Doctors and Nutrition Therapy
R Rocket
TE Marie I posted 3 links in total throughout the thread to various articles, studies and presentations of Dr. Shen's about IPS, some including other j-pouch problems. There is other Irritable Pouch Syndrome information available on-line as well. [ more ]
Rocket Sudie, Thanks for the tip. I am having the Hydrogen Breathizer Test next Wed. I will have to mention this to the doctor. Rocket [ more ]
sudie Rocket. Just a few days ago there was a post called FYI . Ips v pouchitus I found it gave me some info that I was not aware of and answered some of mine I think vanassy gave a link to dr Bo Shen interesting. Irritable pouch syndrome might help [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
Throbbing in anus area
S samlc25
grandmaof1 I just went through the same thing. And my GI doctor thinks I have a fissure. So I am waiting for some cream to use. The compound had to be made. A few weeks ago I wanted to die the pain was so bad. I am praying this is what it is so I can deal with it and not go through it again. I had a scope in the beginning of October and he said everything looks great. So I hope he is right. But I feel your pain. I haven't had it now only every now and then when I have the urge to go. Please keep us... [ more ]
Cristol I had this and went in for a scope---turns out I had an ulcer on my right side inside my anus. The only way they caught it was with the scope---the throbbing was so intense I made a trip to the ER. Might be worth a shot for a scope if it doesn't heal. Good luck! [ more ]
samlc25 Jan, It's not so much pain as it is just a severe body ache in the anus area. Yeah, I know a pain pill would make it go away but I don't want to develop dependency. I've been twice in the past two months to the dr for possible pouchitis and low iron and going to see a hematologist for an iron infusion sometime this month. Thanks [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Looking for GI or Colo-rectal in Sacramento area
B BlmBlp
BlmBlp Thank you for responding. I know how you feel about Dr. Fleshner. He's the only one I really trust, too. I'll stay in touch with you and if I find a good GI or colorectal surgeon, I'll let you know. Good luck with your diagnosis. Wishing you the best. Isn't Sacramento a great city? Take care. [ more ]
bearkoda I am new to sacramento and in the same situation as you. Dr. Fleshner and dr. V were my docs at Cedars and I still communicate with them. Fleshner does not know any surgeons here so I guess I am going back to LA once I can get time off my new job. I was considering ucsf IBD center...maybe that is an option? At this point I only trust Fleshner to touch my colon!!! I do have a go here at Sutter but considering uc davis as well. Dr. Principles for hi and dr. Troppman for colorectal surgeon. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Low dose aspirin
B BarryY
BarryY Thank you for your responses. I will talk to my gastroenterologist as well as the colo-rectal surgeon. Sincerely, Barry [ more ]
BillV My GI recommended aspirin as an alternative to Celebrex, which had been found to cause heart problems if used for an extended period of time. I have FAP, and aspirin was found to reduce polyp formation. There still is no consensus in the medical community regarding effective dose (range stated is a baby aspirin to 2 per day). I took half to one aspirin per day for a number of years and had no problems with my J pouch. Your doctor should be able to provide you with guidance for this issue. [ more ]
Jan Dollar It is one of those "it depends" sorts of things. It depends on how you tolerate aspirin and it depends on what your cardiovascular risks are. I would not recommend taking it on general principal, like many in the general population do. But, you can ask your doctor if this is something that is right for you. Obviously, if you are prone to GI bleeding or NSAID induced pouchitis flares, then the benefits of the aspirin have to outweigh those GI risks. On the flip side, not everyone who has a... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Gallbladder
J JessGoguen
vanessavy Gallbladder is real easy surgery. Downtime is maybe 3 days. Mine caused me to be out of breath and my belly button felt like it was being ripped out. Glad I got rid of it. My gallbladder looked "ok" On scans but once opened it was falling apart. [ more ]
mgmt10 I understand not wanting another surgery right now especially with a new born. I don't think there is any immediate harm in waiting but if you have gallstones then eventually it's going to have to come out. And like what happened to Sharon above, you don't want an emergency situation making a simple procedure much more difficult. I would discuss a time line with your dr. to see what he/she thinks. Good luck! [ more ]
skn69 Mine had been bugging me for years...I knew that I would need it out one day but wasn't thrilled with the idea...suffered a lot for a long time until it was too late...then it was done in an emergency situation and according to my surgeon was near to bursting...didn't realise how much pain I was in until I was out of it...then I wondered why I had suffered and waited all of these years... I had mine out through laporoscopy and it would have been a snap if it hadn't been so big and full of... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Having new problem
M MrVernon
Anushka MrVernon, please keep us posted on what happens when you introduce solid foods. I'm going through a very similar situation, and have already been to the ER once, almost twice with terrible cramping pain and vomiting. I've had an abdominal x-ray and CT scan, which showed no obvious obstruction. I'm now waiting for the results of an MRI. On a liquid diet, and afraid to try solids, since the last time I did (after 3 days of liquids) it almost sent me back to the ER. [ more ]
CeeeeCeeee Jan....when my small intestine kinked and caused a full on obstruction with pain which made childbirth labor seem like a breeze, my surgeon used his hands to "press" on my abdomen causing excruciating pain. He did this several times and I thought (at the time) he was feeling for something. Now, I wonder if he was trying to manipulate things so that the kink would "unkink". I guess it worked because after four days it unkinked and he didn't need to operate! What do you think? [ more ]
MrVernon Thank you both - I think it's passed, and likely was an obstruction. I've stuck to a liquid diet for a few days. I'll slowly introduce solid foods and see where it goes. [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
something for itching on outside of anus and more
R Rebe0505
Karma1967 I use ILEX skin protectant paste. What a lifesaver. [ more ]
kta The line about scooting like a dog made me laugh out loud. I know I itch when I haven't cleaned myself well. The toto bidet is my lifesaver. When traveling, I use a hand held toto product and Proshield Plus incontinence spray. I have to order both online. Between the two, I usually keep things pretty itch free. [ more ]
kk so glad you not only found something but shared it. hope nobody does but if you end up with what looks like holes (burnt from a ciggarret and you find something that wks. PLEASE let me know. I think for this condition witchazel would burn. I was given lidocaine after someone suggested/ dr. gave me prescription. WOW! I couldn't get that stuff off fast enough. suppose to sting a little then be soothing. not the case. [ more ]
See all 11 replies...
J-Pouch ForumsPouchitis
New j-poucher
S Sparkman
Army wife Hello, I had my take down at the end of August. I averaged 15 times per day in the beginning. Now I am averaging 7 or 8. I am not on a restricted diet, but I am becoming more aware of what foods seem to be problematic. Good luck with the doctor. I know the stress of traveling doesn't help matters. [ more ]
Sparkman No I don't have a temp...and I will keep track of what I'm eating...thanks for the response [ more ]
Lesandiego Do you have a temperature 99 or above? Keep a log of what you eat and number of trips to the bathroom per day. Foods that didn't used to bother you may now be a problem. [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Excision of j pouch
K kennyboy
kennyboy Hi pamela, where did you have your jpouch surgery I see you live in London ,we live in west Yorkshire ,but originally from middx. My husband has had his jpouch for aprox 15years and it has never worked properly ,it is disconnected at the moment and he has an end ileostomy ,but the pouch still causes him many problems so heis waiting to go in and have it removed in Leeds. Hope you get sorted too. [ more ]
country girl I had my Jpouch removed in March of this year. I was in the hospital maybe 5 days, no worse abdominal pain than any of the prior surgeries. My rear end was a little tender sitting, I was just careful on how I sat down. My doctor told me to take off 6 weeks for work and I was like, Yeah right! I was back to work after 2 weeks but my job doesn't require heavy lifting, I do a lot of sitting and thats all I was doing at home so I figured why not work? I feel fantastic now and don't look back, I... [ more ]
Fruitloop Hello my name is Pamela I'm from London I've had my J pouch for 15 months now, and after several complications my surgeon has decided to remove my pouch,close my bottom and give me a permanent stoma, I'm a little worried about the surgery I was in a lot of pain after my sub total colectomy and when they went to reverse it with the pouch, the first pouch died and I could not have a two stage procedure and it was done in one I was in intensive care for a while and the recovery was slow, can... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Abscess drainage
aka KNKLHEADaka KNKLHEAD
aka KNKLHEAD Thanks, Jan. I think it was a perianal abscess. My doctor looked for a fistula, but said he couldn't find evidence of one. Hope the abscess (and fistula) stay away. The doctor said that the work Dr. Shen did on the sinustomomy was on my right side, the abscess was on my left side. I feel like a new man and hope we can stabilize! I also have a follow-up pouchoscopy with Dr. Shen for next week that I may want to move back another week or two to let everything heal up. [ more ]
Jan Dollar Sounds like a perianal or perirectal abscess. It is impossible to tell if this was connected to your prior fistula or not without knowing how your fistula sinus was directed. Sometimes they have multiple "fingers" to them. Also, perianal and perirectal abscesses can be recurrent. Good questions to ask your surgeon and Dr. Shen. Maybe he could do a fistuogram to see where it goes. But, hopefully, incision and drainage is all you need for this one, and they do not connect. Jan [ more ]
See all 2 replies...

Join Us!

Founder, Creative Director & Web Master

William J. Johnson
bjohnson@j-pouch.org

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.

Forum moderator and advisor
Jan Dollar R.N.

 

 

 

 

General Disclaimer

 

This ileoanal web site is designed for educational purposes only and is not engaged in rendering medical advice or professional services. The information provided through this ileoanal web site should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you have or suspect you may have a health problem, you should consult your health care provider.


Materials presented on these pages are copyrighted by William Johnson and Linda B Hurd. Except as superseded in individual documents found here, these materials may not be sold or redistributed for profit in any way without express (not email) written permission of the authors. This includes, but is not limited to, translations into foreign languages, mass archival as on a CD-ROM and inclusion in commercially published compilations (books).

Confidentiality

Confidentiality of data relating to individual patients and visitors to the J-Pouch Group Web site, including their identity, is respected by this Web site. The J-Pouch Group Web site owners undertake to honor or exceed the legal requirements of medical/health information privacy that apply in the country and state where the Web site and mirror sites are located.

 

CCFA

The Crohn's & Colitis Foundation of America,
Philadelphia, Delaware Valley chapter, is located at
521 Bustleton Pike, Feasterville, PA, 19053.
Tel: 215-396-9100


National CCFA headquarters are at,
396 Park Avenue South, 17th floor
New York, New York 10016-8804
Tel: 212-685-3440    800-343-3637

 

Join Now

Already a member? Sign In

Online Now

Copyright © 2019 The J-Pouch Group. All rights reserved.

Membership Required

We're sorry. You must be signed in to continue. Sign In or Register
×
Are you sure you want to remove from your Block List?
×
Loading...
×
When you block a person, they can no longer invite you to a private message or post to your profile wall. Replies and comments they make will be collapsed/hidden by default. Finally, you'll never receive email notifications about content they create or likes they designate for your content.
Note: if you proceed, you will no longer be following .
×
Link copied to your clipboard.
×