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J-Pouch ForumsGeneral Discussion
METAMUCIL REVERSE EFFECT??
bederyparisbederyparis
lclassen Metamucil is my saving grace. I have been on it daily for over 15 years, and I refuse to go a day without it. I even take it into restaurants if I have to. It has kept me "regular" and i swear by it. What works for me is to mix just 1 tsp with a little ice, about 4 oz of very cold water, and 8 oz of orange juice. Then I drink that while I eat my breakfast. And, right now, I'm also taking VSL #3 DS, so I just add that right in... I jokingly call it my morning cocktail. My nurse did tell me... [ more ]
rachelraven It made things too thick for me after takedown, so I never used it. Never needed it. [ more ]
CeeeeCeeee My gastroenterologist told me that Metamucil is a regulator. It can help to decrease or increase B.M.s. I use it when I am feeling "constipated". I didn't start using it until about a year after takedown. I just reintroduced foods and liquids very slowly and methodically. [ more ]
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J-Pouch ForumsGeneral Discussion
Disconnected pouch still sick
AllyKatAllyKat
AllyKat Thank you Jill, we have spoken before on and off the years. You were the original poster child. I'm so glad things worked out for you. I'm seeing my GI at the end of the month. My surgeon thinks the pouch could still be inflamed. I'm not doing well. [ more ]
JillM Yes. I had the pouch disconnected (i wanted it removed and surgeon convinced me to keep it in). Not only did I continue to have pouch issues, I developed additional issues - lightheadedness, dizzy spells and some others. I continued to have pouchitis with the pouch disconnected. I went 18 months with the disconnect then had the pouch removed. 12 years later - post pouch removal - not one GI problem (except if I get a stomach bug I need IV at the hospital to rehydrate). I haven't even seen my... [ more ]
AllyKat What did they do for his pouchitis? Is he having the pouch removed? So sorry he has issues as well [ more ]
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J-Pouch ForumsGeneral Discussion
Travel Question - Meds
SpookySpooky
Spooky Thanks again for all the tips. I've decided just to take the essentials as going without a few of the supplements for 5 or 6 days shouldn't be a problem. Magnesium, turmeric, calcium and iron are divided in pill boxes. Align is in the original blister pack. I'm taking the imodium in the original container and I've got Tylenol (clearly stamped "TYLENOL" on each pill) in a ziplock bag. Prescription allergy meds are in the original bottle. Hopefully I shouldn't have an issue. It's funny. I used... [ more ]
CeeeeCeeee The only time I had a problem bringing vitamins/supplements into a country packed in those weekly distribution containers was when I arrived in Tokyo! I decided that from then on I'd carry the original containers as well as the weekly/daily containers. [ more ]
CTBarrister jaypea, You are correct about transport across the border, but I am told by a Canadian friend that it is "quasi-legal" if an American mails the seeds across the border to himself at a designated address or to a designated third party. What he can't do is transport them across the border himself. And that is what he apparently did- he mailed the seeds to someone who grew the seeds for him in Quebec. I assume he used no return address or bogus return address. If it gets to where it is going no... [ more ]
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J-Pouch ForumsGeneral Discussion
Diverted for pouchitis, going back to pouch?
AllyKatAllyKat
Pouchomarx i had diversion pouchitis a few times since going back to ostomy a year and a half ago due to a leak, getting a jpouch redo in 6 weeks. [ more ]
dgtracy I had alot of issues that required a diversion for awhile. when i went back to my pouch everything was great for a couple of months, but then i had a stricture form and just spiraled after that to different issues. [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic Pain
P phonix2g
Pouchomarx i am taking low dose oxycodone for intestinal spasm pain as needed. I cant take the antispasm meds due to horrible blurred vision. I see pain mgmt every 2 months. I had my surgery 2008 but many issues in past few years so back to ostomy over a year and a half ago. Scheduled for a redo in 6 weeks [ more ]
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J-Pouch ForumsGeneral Discussion
DMSO
HockadooHockadoo
rachelraven My only experience with it is that bone marrow transplants use it in the marrow being transplanted so the blood cells don't crystallize. This causes the patient to have that DMSO breath (always smelled like creamed corn to me; some say garlic). Never even heard of it for the use you're saying. Interesting. [ more ]
Scott F DMSO is dimethyl sulfoxide. It's a solvent quickly absorbed through skin (along with whatever other crap is on your skin). It would never be used, I think, for post-surgical adhesions in the abdomen, though it might be used by some on the other sort of fascia "adhesions" non-surgeons sometimes talk about. It certainly can work as a local pain killer, but there are plenty of issues (and drug interactions) with it. I'd be astonished if it did anything for strictures. [ more ]
dgtracy what is DMSO? [ more ]
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J-Pouch ForumsGeneral Discussion
I hope someone can help me. Im so confused
dgtracydgtracy
rachelraven I have heard of that squatty potty. I don't need it; what I meant was the angle of sitting in the toilet vs sitting in the bath, where the hot water hits right at the anus, that's what relaxes things so they pass easily (when I've had issues). Which reminds me: it's a Canasa night! [ more ]
CeeeeCeeee Years ago when I was experiencing problems emptying I would stand in my shower and with the shower arm I would aim the spray of warm/hot water up my anus. This relaxed things enough that everything emptied! Cleaning up the shower was easy with the shower head and cleanser. It felt like such a relief! [ more ]
Dog rachelraven: Have you heard of squatty potty? If you think it is something about the angle, my friend swears that this device will help. I've not tried it though http://www.squattypotty.com/ [ more ]
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J-Pouch ForumsGeneral Discussion
Antidepressant for man with jpouch?
D DiarrheaKing
DiarrheaKing Yes...it is an antidepressant so that is a benefit, but I was originally prescribed it because there is anecdotal evidence it can help with IPS...so my doctor said. One of the side effects of this med is constipation, so I'm guessing that's the reason why it's used. Thanks, [ more ]
dgtracy i dont want to threadjack or throw things off course but DiarrheaKing you said amyltriptaline is for your irritable pouch syndrome. i take it as well but when i was given it, it was because of sleep issues, im assuming IPS is where your going alot right? You could message me if you like to keep your thread on track. [ more ]
Jaypea When changing antidepressants you must do it carefully, slowly, and under the care of a physician who is familiar with the drugs. It takes a good 6-8 weeks before a new anti-depressant will start to work and it could take longer to get the dose right for you. Please be very careful when you do this. You might also like to consider counselling or therapy while you are in the midst of this change. [ more ]
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J-Pouch ForumsGeneral Discussion
Falling down
skn69skn69
Jan Dollar I haven't fallen since I started using my walking stick. It is a trekking pole with a cane grip and shock absorber (so my arm and shoulder joints don't hurt more). It is like this one. http://www.amazon.com/Chinook-...Hiking/dp/B00BNUGCAI PT didn't do much for me, but maybe it will help you. It seems that you are very active, so I doubt it is deconditioning. Jan [ more ]
skn69 Thanks for the input guys, My doc gave me a script (that is how it works here) for 30 sessions of PT for balance and to re-educate my walking/gait/hips...hopefully that will help. What doesn't help at all is the darn paving stones all over the place (wanted to use a nasty word but it would have been sensored)...the ground under and around them sinks or collapses and you get this wave of uneven stones that are just laying in wait to trip you up...hubby is using a cane and he is even more... [ more ]
JLH sharon so sorry to hear about your fall. i refer to them as 'free bone desity tests'. congrats, you apparently passed this one. as for PT, i can say that it has great merits for both joint stability and balance--so long as you diligently do your exercises and have a good PT. i've had both hips and one shoulder replaced and have significant spine problems and other ortho issues. if it were not for pt and my exercising close to 2 hours a day i'd never would have gone sailing and biking this... [ more ]
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J-Pouch ForumsGeneral Discussion
Wet wipes on the go? (no pun intended)
aka KNKLHEADaka KNKLHEAD
Mysticobra Originally Posted by Scott F: Mysticobra, I've noticed a similar effect. If I'm focused on other things I may not even be aware of my pouch for hours, but when I get home it's often really time to deal with it. Hey Scott...... Ya it is the weidest thing isn't it. Must be because we focus on work or driving and completely take our minds off it. Bad this is... Example... I start work at three pm.... I eat my dinner at five thirty pm and that puts it all in motion. It's like clockwork everyday. [ more ]
Jmama Buy whatever baby wipe is softest, and rinse well with water. Stuff a few in a ziploc baggie. Voila! [ more ]
Scott F Mysticobra, I've noticed a similar effect. If I'm focused on other things I may not even be aware of my pouch for hours, but when I get home it's often really time to deal with it. [ more ]
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J-Pouch ForumsGeneral Discussion
Adhesions
dennyp3dennyp3
Elisa W I think Scott describes the process well. My surgeon cut/detached my adhesion from my pelvis and said he "straightened out" the intestine. Luckily, he knew where it was from a CT scan, so he didn't have to open me up to find it, and he was able to do it laparoscopically. [ more ]
Scott F This thread has gotten a bit confusing, partly because we've called some very different things by the same names. Jan and thumprhare have helped shed some light on this. When surgeons talk about adhesions they're just about guaranteed to be talking about fibrous connections of scar-type tissue in the abdomen that attach things together that shouldn't be attached - two different parts of the bowel, for example, or part of the bowel to the abdominal wall. These are a common consequence of... [ more ]
sweetpeasmom Dennyp3 said: The surgeon spent 4 1/2 hours unraveling my adhesions. You can't cut them, it just creates more adhesions! Can someone explain what unraveling means? I thought adhesions were thick fibrous bands of scar tissue. How do you unravel them? Is this a common treatment? Is it only done during "open" surgery? Thanks! [ more ]
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J-Pouch ForumsGeneral Discussion
Osteoporosis and radiation therapy
MizchelleMizchelle
Jan Dollar Your biggest factor is likely your family history, which you cannot change. There is no reason not to resume your active lifestyle (whitin reason), as weightbearing exercise is the most important thing you can do, other than making sure your vitamin D levels are good and you get adequate calcium/magnesium. Prescription meds are a good idea too. Try not to worry about what has not happened yet. Jan [ more ]
Scott F That menopause probably isn't doing your bone density much good, either. Have you started on one of the bisphosphonate medications (like Fosamax)? They take a while to work. That's what I took years ago when I had steroid-induced bone density issues. [ more ]
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J-Pouch ForumsGeneral Discussion
Still asking the same question
J JHendrix
GraceB I also had a pimple like cyst on vagina and I tried to heal it myself. After it popped I noticed That three more popped out and they were vey painful and treated those myself. I find it hard to discuss these things When I went to gynecologist I mentioned it to her she said it was most likely ingrown hair. I am now reading posts and thinking is it something that I should tell my gastro about? [ more ]
CeeeeCeeee It sure sounds like it is more than just a Bartholin cyst. I think it is a good idea to let your colorectal surgeon explore the possibilities and suggested treatment. Best wishes. [ more ]
Scott F Patrizia, it may be useful for you to know that a hemorrhoid *is* a kind of varicose vein. They can get hard when the blood clots (the hemorrhoid is then called "thrombosed." I don't know if that's what you have, but maybe this information will help a bit. [ more ]
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J-Pouch ForumsGeneral Discussion
Paranoid now - abscess or fistula?
D DeathStalker
virginiac So Deathstalker... what was the outcome - ?? did it heal?? Ive just had another seton drain put in oh well know what to expect these days Cheers from down under [ more ]
DeathStalker Yes, Dan, you are correct. I was just surprised that they saw no tract because after two visits to the doctor to excise the abscess, it was still draining. I would have put money down that it was a fistula but when the surgeon went in on Thursday to do an exploratory procedure, he never found any tracts so he just removed the entire abscess. I hope he's right in that this is all there was. Would hate to have to go through all this again. [ more ]
Pouch4Wf I might be naive, but don't they need to identify the fistula tract before inserting a seton? Hopefully, they were able to visualize and explore the area enough to be confident that there was not a tract. Dan [ more ]
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J-Pouch ForumsGeneral Discussion
Thought i had a stricture but i did not.....
dgtracydgtracy
dgtracy This is so weird. I was scrolling through looking at posts and I must have posted thiswhile still having anesthesia messing with me as I don't remember doing this. I made a new post for issues that are still continuing. [ more ]
Scott F I've been saying for a while now that I think taking psyllium with a small amount of water is a bad idea. IMO it should be taken with plenty of water, and in my experience it works great that way. [ more ]
Jan Dollar As the saying goes, "the proof is in the pudding." Even if it seems improbable, if the doctor finds this stuff is not moving through, then that is the reality. Each of us responds to what we take in as individuals. The trick is in finding what works for you and that perfect balance of thick enough to prevent butt burn, but not so thick as to get clogged up. It is a trick because there is no "rule book" that works universally. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Trouble emptying the j-pouch
J jsant008
mgmt10 You may have a stricture that needs to dilated. I dealt with one after my takedown surgery. Ask your dr. [ more ]
DiarrheaKing Hi there, I too have a j-pouch and strugle with this. What helps me immeasurably now is to have a bidet. I used to use a hand held sprayer but this is much better. It actually gives me an enema when I use it and that helps me to empty completely. Mine is like this: http://www.amazon.com/gp/aw/d/B003TPGPUW?vs=1 They can be a little hit or miss...I have one of the exact same in my second bathroom that doesn't squirt as high of pressure and is not as effective...but still much better than... [ more ]
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J-Pouch ForumsGeneral Discussion
How many j pouchers are out there?
S Salmak
lablover My husband had his done 20 years ago at GW. [ more ]
lauren972 Do you have an update on active members now? I saw the post was from 2 years ago (14,200) so was wondering if anyone know she.. [ more ]
Indy_Dave Being that I work where there is a public restroom in a busy place - it sounds/smells like there are MILLIONS of J-pouchers visiting "my" bathroom every year... Sometimes I just want to ask who did your surgery and did you just pushed out a massive blockage just now! [ more ]
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J-Pouch ForumsGeneral Discussion
Celiac disease question ?
PouchomarxPouchomarx
Jan Dollar Celiac disease is gluten intolerance. What sets it apart from a gluten sensitivity is that there is damage to the intenstinal villi from the inflammatory response. A non-celiac sensitivity is much more common and does not damage the intestines. http://www.celiaccentral.org/n...ion-and-definitions/ Either way, intolerance or sensitivity can develop over time. Of course, you can self test by going gluten free to see if that improves your symptoms. You just can't do that shortly before testing... [ more ]
Pouchomarx I'm pretty sure it was a blood screen in 2008. Jan, you say gluten "intolerance" can develope over time, cant Celiac as well? If you have the scope and biopsy done and it does not show celiac, cant it show up later in life still? and who knows if i have symptoms? lol. with all my surgeries and on and off pain, I would not be able to tell if it was from something i ate or just my normal aches and pains..lol [ more ]
Jan Dollar Gluten intolerance can develop over time, so if you think you have developed new symptoms since you were last tested, it makes sense to have the screening bloodwork done. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
To: Jan and Barrister
L LisaT
Jeffsmom Lisa, my son was diagnosed with PSC in May. If you need any help, let me know. I've received a good education in the last 4 months. Let me know if I can help. dianne [ more ]
Jan Dollar Yes, often with pancreatic cancer, there are no obvious risk factors, just like with UC. Could be environmental exposure. Impossible to say. They still know very little about it. Hard to study a cancer that so quickly kills. Jan [ more ]
CTBarrister Jan, My grandmother who died of pancreatic cancer did not smoke, have pancreatitis or have any family history of cancer nor did she have autoimmune disorder/IBD. It was widely speculated within the family that her work experiences in a factory during World War II which manufactured munitions exposed her to carcinogens which caused the cancer. Both she and a brother who worked in a similar factory which exposed him to assorted carcinogens died of cancers, but their other 4 siblings, my great... [ more ]
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J-Pouch ForumsGeneral Discussion
VSL#3 Question ?
PouchomarxPouchomarx
Scott F The single strength VSL maxes out at 8 packets/day. I believe the DS (prescription strength) maxes at 4 packets/day. The dose of bacteria in VSL is much, much higher than most other probiotics. I hope you can get good coverage without a hassle. [ more ]
Jan Dollar The thing with probiotics is that results are strain specific, and it is the proprietary strains that make a difference. VSL#3 has a unique combination and is one of the few preparations that have been studied for pouchitis preventative and remission maintenance. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
How do I slow my system down ?
D.D.D.D.
Ikh Mmm I'm not sure that if your ileostomy output is fast, so it will your pouches'. When I had my loop ileostomy, it was going out very fast but it's just mechanical as when it arrives overthere, it simply exits. I think that when you'll have a pouch she will begin to contain automatically. [ more ]
Jan Dollar Did you have intolerable side effects with the Imodium? If not, it is one of the best slowing agents for the gut, and safe for long term use. It can be a godsend during those early months while the pouch adapts. You can add soluble fiber and adjust your diet to thicken the stool, but none of that actually slows the gut. That takes time and/or bowel slowing drugs. If Imodium works for you, consider yourself lucky because it does not work for all. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Increased bm frequency
I Ikh
rachelraven Straining *might* have caused an issue for me. A likely bout of pouchitis and straining is what my CRS said could have caused my anal gland issue to abscess which then 50% become a fistula. I don't know exactly how he thinks that works, but that was his first assumption. My GI thinks I have larger IBD issues. [ more ]
Ikh Scott, I think that the cause is mechanical / psycological: when I empty, I want to empty full, but the first "batch" is overwhelmed by the weight of what is above, so it goes out very well. When it remains something (that I definitely feel) I have to decide if keep it, or strain to expel it. And psycologically I always choose the latter as I like to be really empty. But this is the case, I already lose blood every single time I strain too much. [ more ]
Scott F Straining won't cause anal cancer, pouchitis, or fistulas, but it can lead to hemorrhoids, pouch prolapse, just a variety of miseries. If looser stool doesn't reduce your need to strain then it's due to other causes that may be trickier to work out. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
Just when I thought it was coming to an end
P phonix2g
Jeffsmom Mark, I'm so sorry you are going through all this pain and complications. Sounds similiar to what my son Jeffrey is going through. Have them check you for kidney stones. My husband just had one surgically removed. They don't show up on CT scans as far as I know, and IBD patients are much more prone to them. And they hurt like hell. I've heard women say, giving birth was less painful. Just a thought. please feel better soon. dianne [ more ]
skn69 I am so sorry Mark, No, no experience with that but I know what it feels like to have non-stop complications that seem to never end...until they finally do. One day. I am somewhat out of the frying pan...the fire remains but it is slow burning so I can manage it. I hope that you finally find and end to all of these complications and can get back to a "normal" life whatever that is for you. Good luck and get well soon... Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Advice for a possible new J-Poucher
FM Former Member
BillV Willie, if your anal sphincter is no longer present, your options to continuing with an ileostomy are the k pouch and the BCIR. These procedures are similar in that the surgeon creates an internal pouch (similar to a j pouch) that is emptied 3-5 times a day with a plastic catheter. The stoma is located below the belt line, is button hole size and does not need an external bag. There would be no problem being a “normal teen” including swimming, sports and a normal sex life. These procedures... [ more ]
Scott F Well, neither one is anatomically correct, but a Ken front would be awfully invasive surgery. [ more ]
Mysticobra Now. Jan... That's funny! [ more ]
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J-Pouch ForumsGeneral Discussion
Pancreatic Cancer and Colectomies
L LisaT
Jan Dollar If this was PSC, there surely would be bile duct involvement prior to pancreatic duct involvement. I have no doubt they would have looked for it in Lisa's case with the MRCP. Perhaps in your case, Lisa, the pancreatic duct dilation was caused by a blockage from a stone that had dislodged by the time the scan was done. If so, serial scans should show gradual improvement in your duct. Sounds like your doc is being very proactive. My dad died of pancreatic cancer a number of years ago. He had... [ more ]
CTBarrister Lisa, There have also been some members here who have had PSC and I recall a thread about the linkage between PSC, which is a bile duct disorder, and autoimmune disorder. There was a member by name of Shell Worrall from the UK who posted fairly regularly who at some point was diagnosed with PSC. More on PSC here: https://en.wikipedia.org/wiki/...lerosing_cholangitis Here is Shell's board profile here. Looks like she hasn't visited since January of this year: ... [ more ]
CTBarrister Lisa, Please post the link to that study, if you can. Back in June, I was diagnosed with thyroid cancer. My endocrinologist told me that my form of thyroid cancer is caused by a genetic mutation that developed during my lifetime, for unknown reasons. The thyroid is a gland that secretes hormones as well. I had total thyroidectomy and one lymph node removed July 14. So now I am without colon, thyroid and a lymph node. I am wondering what will be taken out next. There have been studies linking... [ more ]
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J-Pouch ForumsGeneral Discussion
Fiber
Deanna6Deanna6
Scott F Psyllium husk mixes much better when shaken than when stirred. Konsyl gives away plastic shaker cups for the purpose. That won't fix a gas/bloating reaction, of course. [ more ]
Jan Dollar I am fine with fiber in foods. But, I am 20 years post op, so plenty of time to adapt. Just remember that a diet high in insoluble fiber (like roughage of fruits, vegetables and whole grains) is not recommended early on as you adapt. Adjust to your own tolerance. There is no "rule," just what works for you. Jan [ more ]
Deanna6 I got the psyllium husk this weekend and can't tolerate it either . Very painful gas and bloating. and even though it didn't have a flavor I found it didn't mix well and had a hard time gagging it down. Looks like more $ to try another. Jan do you have a hard time with fiberous foods as well? Because I don't do well with whole grain stuff either. [ more ]
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J-Pouch ForumsGeneral Discussion
Bacterial Infection
G GraceB
Jan Dollar Don't worry about your cough causing a hernia. You are supposed to cough post op, and the incision is built to take it. Jan [ more ]
GraceB Jan Yes my mom had the same thing after taking her to allergist for a year and she continued to cough and choke . I was told by my neighbor that someone she knew had same thing and it was her blood pressure meds that was causing it. So when I took her to her heart Doctor I told him about my moms cough and he took her off that med and she was fine after that. [ more ]
GraceB Branchy Maybe you have a post nasal drip..Ask your Dr. about nasanex or one of the nasal spray medications. That would also make you cough and sometimes choke.I hope you get answers Grace [ more ]
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J-Pouch ForumsGeneral Discussion
J Pouch Tip leak
M maey2462
shawne h A CT showed a leak near the coccyx must have always been there since 1986 they suggest it healed itself to stop the leak into the pelvic cavity and stool flows into it and out of it kind of like the tide the surgeon said. [ more ]
Pouchomarx how was your tip of jpouch leak fixed??Originally Posted by dtmack: Originally Posted by maey2462: Has anyone ever had a J Pouch leak? If so how was the surgery to repair. Thank you in advance I have fought a tip leak for almost 2 years and am now successfully reconnected. My surgeons are also in Cleveland. If i can help, please let me know. I have gone through everything with this thing. Derek [ more ]
dtmack Originally Posted by maey2462: Has anyone ever had a J Pouch leak? If so how was the surgery to repair. Thank you in advance I have fought a tip leak for almost 2 years and am now successfully reconnected. My surgeons are also in Cleveland. If i can help, please let me know. I have gone through everything with this thing. Derek [ more ]
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J-Pouch ForumsGeneral Discussion
My Experiences - Am I normal?
SnipeySnipey
Jan Dollar Well, for one thing, your ileal pouch (and your rectum, when it existed) would lay next to the spine, behind your bladder, and not insubstantial abdominal wall. It is deep in the pelvic cavity, under the bones of the pelvic girdle. So, unless you have x-ray vision, you are seeing something other than your ileal pouch. I am not saying you do not have a s-pouch, just that you cannot know without looking at your records or asking your surgeon. The reason they do not do s-pouch procedures much... [ more ]
Snipey Originally Posted by Jan Dollar: Realistically, I think you have as good of fuction as anyone after a total proctocolectomy. You seem to be doing very well. Typically, 4-8 bowel movements per day are to be expected. To expect or strive for less than your 2-4 is not advisable, as that can lead to bacterial overgrowth from fecal stasis. It is impossible to tell what sort of ileal pouch you may have by looking at yourself externally. A pull-through procedure may mean anything from no pouch to... [ more ]
Jan Dollar Realistically, I think you have as good of fuction as anyone after a total proctocolectomy. You seem to be doing very well. Typically, 4-8 bowel movements per day are to be expected. To expect or strive for less than your 2-4 is not advisable, as that can lead to bacterial overgrowth from fecal stasis. It is impossible to tell what sort of ileal pouch you may have by looking at yourself externally. A pull-through procedure may mean anything from no pouch to an S, W, or J. S and W pouches... [ more ]
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J-Pouch ForumsGeneral Discussion
stricture question
thumprharethumprhare
jeane I have this done often (actually too often like every 3/6 months over last few years). I am always sedated as they cannot enter the anastomosis easily without sedation for me (opening is about 1 centimeter). I am actually considering having minor surgery where the surgeon either places several small slits in the anastomosis or cuts out the scar tissue around the sides and lower part of anastomosis and restaples the pouch. The second approach really scares me as I worry about possible... [ more ]
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J-Pouch ForumsGeneral Discussion
Loving my new pouch!
aka KNKLHEADaka KNKLHEAD
aka KNKLHEAD Update from the family outing this past weekend. Day 1, perfect and slept the ENTIRE NIGHT for the first time in a long time. I even had a beer for dinner and some beef/steak shishkabobs. (sp?) for dinner. Walked around outside for most of Sat and Sun and did well, but was exhausted at night and probably not enough water in the sun. I think I had the combination of missing some Imodium AND some fair food, like fried dough and huge ice cream that loosed up the works quite a bit yesterday. I... [ more ]
dtmack Awesome news!!! Hit my 5 month anniversary of take down #2 today and am also doing very well. Keeping fingers crossed for all of us [ more ]
Elisa W Great! Hope it helps! [ more ]
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J-Pouch ForumsGeneral Discussion
1 week out on 2nd of 3 surgeries
NS Nora S.
thumprhare No reason they can't fit you in before Friday. As some who knows waiting a week can eat a divet in the skin you have to get in sooner then later. You may need convexity. You may be getting a pressure ulcer....you may need a better barrier system. I was going through one appliance every 24 hours because of skin breakdown and leaking. Call them and push to be seen! [ more ]
Elisa W I put stoma powder on the broken skin, dusted it off, and sprayed a film of skin barrier over it. On my second stoma, my output never thickened, as I had a bowel obstruction and couldn't eat solids. But I used Coloplast barrier strips and convex wafers, and they worked surprisingly well, considering my output was completely liquid. They didn't leak, and I had some skin breakdown, but not too bad. Because I was also always dehydrated, my surgeon did the takedown after five weeks instead of... [ more ]
rachelraven I only had a 2 step open surgery in 1991. I quit all pain meds in the hospital, when I developed an ileus, so can't help you there... stupid? Maybe... but I think I have a weird pain tolerance, honestly. I was told to eat thickening foods, but honestly, if it's a "loop" ileostomy, or even an ileostomy, it's never going to be super thick. Loops are higher up the small bowel, too, so will be even more liquidy. Small bowel stool just isn't the same as colonic stool. I didn't do anything... [ more ]
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J-Pouch ForumsGeneral Discussion
Fully emptying.
Richard_UKRichard_UK
Marls it might be worth a trip to visit your surgeon. During my first two years of post op, my surgeon found that the opening between by jpouch and and small intestine was too small/narrow. He had his nurse give me self dilators and I had to work my way up to the one they wanted me to be at over a long course of time. It is defiently worth doing it because it helps the opening so you can have an easier time emptying. Also, if your getting itchy a small amount of desitin may help. It's really think... [ more ]
Luton Matt Fybogel is pretty cheap (still psyllium but called isphagula here in Blighty) I take half a sachet in the morning and maybe the other half if needed later on in the day. For me it creates that middle ground taking psyllium/isphagula [ more ]
Richard_UK Thanks for all the replies. No haven't rest taken immodium thus far. I've actually been really loose the last 2 days and finally fully emptying. Just need to find a middle ground now where I am emptying but it's not too loose. I'll have a look at the psyllium, I know a lot of the things reccomnded on here are pricey to get in the UK. Purchased beano and calmoseptine recently, and it want cheap lol. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Weight loss
JKCJKC
Joanm The topic of weight loss caught my eye as I too am struggling in this area. I have just passed the one year mark since my first surgery and I am still struggling for my body to adjust to this. For those of us in this group it is a disappointment to have gone through such a major surgery, 2 really and in my case I have the exact same symptoms as I did before my colon was removed!! I know my UC had reached the point where I had no other option, no medication had worked and I now had some... [ more ]
mgmt10 It's normal to lose some weight after takedown. The weight will come back. It took me about 6 months to start gaining it back. [ more ]
Nora S. I lost 65 pounds in less than 2 months before they removed my colon. I just, last week, had the pouch constructed and I've kept off 50 of the 65, and I'm losing more again, rapidly. I'm having issues with eating. Once I get that figured out I suppose I'll put weight on, but until then I'll just keep losing until my system settles down. I try to eat, when I can, foods that are healthy for me, fruits, veggies, no sugars, that kind of stuff. The weight will level out and you'll find one day you... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
IMMODIUM
MIKEEYMIKEEY
MIKEEY Thank you JKC [ more ]
JKC I take Imodium pills , usually 5 per day, and do have some muscle aches as a result. I quit for a few days to see if the aches would stop, and they did, but it wasn't worth the loose bowel movements that came back. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
J pouch clarification
2016minus20152016minus2015
Jan Dollar Yes, if you have too much stricturing in your colon, they can remove it. I am not sure how much colon is needed to do a colonic j-pouch, so that may still be an option. That, none of the options are guaranteed, as it all depends on your individual anatomy and if there are internal issues, like adhesions, that may interfere with other surgery. BCIR is not done in very many centers. The Kock pouch is more common, but even that is not done in many hospitals. If you go to the K-pouch Forum,... [ more ]
2016minus2015 Thanks for the quick clarification. So, if I was to get either a ileal j-pouch or BCIR, can't they just have the rest of my colon removed? I just don't want to have a ileostomy bag or a colostomy bag for the rest of my life. AJ [ more ]
Jan Dollar All j-pouches are created to replace the rectum, thus are considered a "neo-rectum." Most members here have an ileal j-pouch, made from the small intestine and have had a complete removal of the colon and rectum for ulcerative colitis or polyposis. In the case of rectal cancer with a low anterior resection, a colonic j-pouch may be created to replace the rectum. The difference between the two is that a colonic j-pouch will produce a function more similar to a normal colon and rectum, while... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
calmoseptine
ketchketch
Jaypea I get Calmoseptine at my local pharmacy (Shopper's Drug Mart) here in Vancouver. I have to ask the pharmacist for it because they don't usually have it on the shelf but they are able to get it no problem and I don't need a prescription. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Fecal Transplant article
aka KNKLHEADaka KNKLHEAD
Jan Dollar Oh, I am sure there is profit to be made, as there is a great expense in preparing the transplant. I would suspect that over time they will grow the perfect fecal microbiotica in the lab, removing the need for continuous donors. They then can market it in pill or capsule form, or even enema or suppository form. But, the jury is out on whether it will be useful for IBD without C. diff infections. This is because they are unsure of the role of bacteria in the inflammation cascade. The current... [ more ]
aka KNKLHEAD I am curious what other form of medication can get as high a success rate as FT against C. Diff? And since it's a treatment that pharmaceutical cannot make billions on, would that slow the rate of adoption rate versus other forms of treatment? I also wonder if this treatment would be effective against all forms of inflammation, including Chrones, Colitis, pouchitis, etc? (Oh, thanks, Sharon .. now the neighborhood dog owners will charge us for their stool donations!) [ more ]
skn69 Wow! It is finally mainstream and acceptable to talk about on CNN... I asked a friend of mine who is a Vet andhe says that he uses the technique regularly on dogs who are antibiotic resistant...no problems at all with doners...They are everywhere! He obtains great results. Seems that Vets have fewer prejudices and contraints than humans on many treatments. Sharon ps. Thanks for the article [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
JPOUCH ADDAPTING??
bederyparisbederyparis
lance619 i was struggling with the same questions/issues after takedown a year ago. recovery/adaptation times vary widely from person to person. my recovery took about 6-9 months, but my takedown almost failed because of my height, and the surgeon had to perform a pelvic resection to make things reach. this one of the reasons i think mine took "longer to adapt." other reasons: stress, diet, family issues, bad relationship with GI doctor. everyone is different, try to be patient and listen to your... [ more ]
CeeeeCeeee It seems to take anywhere from 6 months to a year to reach what will be typical j-pouch functioning for each of us. Patience is not easy but very, very necessary Best wishes! [ more ]
Jan Dollar I agree. You should not worry. Your concern is a very common one. Expect improvement by 8-12 weeks. Improvement, NOT perfection! Jan [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
3 days after Cipro, back to where I was
D DanielR
Scott F I'm on Cipro long-term, and I've had great result with few side effects. Nevertheless, it's well worth exploring whether it's necessary in each case. Most cases of pouchitis really are cleared up with a course of Cipro or Flagyl, and they just don't come right back. It's also worth considering whether some gentler options (like VSL) can reduce or eliminate the need for antibiotics. [ more ]
tamsstark I have the same fear for my son. His experiences sound very similar to yours (except he is now diagnosed with Crohns). He is 3 months post takedown, they started him on Flagyl for pouchitis but after almost 2 weeks it didn't have any effect at all. I asked his doc if he could try Cipro and within 12 hours of his 1st dose he had significant results. He was having 12-15 bm's thru the day, 3-4 at night with accidents...and is now down to 5-6 per day with 0-1 at night and no accidents. He had a... [ more ]
Scott F Daniel, it might well turn out to require antibiotics long-term, but there are some other things worth trying before coming to that conclusion. Have you tried VSL #3 DS in significant doses? It's expensive, but it can help prevent pouchitis from recurring, or at least delay recurrences. Also, some people get good results by significantly reducing their carbohydrate (sugars and starches) intake. If you can manage that it might provide a surprising amount of help. Good luck! [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Construction of the J Pouch
NS Nora S.
Jan Dollar For a few weeks post op, opiates are fine. Plus, there is the added bonus of bowel slowing. Pretty small doses can be quite effective for taking the edge off. Just don't expect to be pain free, just comfortable enough to function. Some people like tramodol, which is similar to an opiate, with less abuse potential. Walking and moving about will help mitigate the pain, paticularly the considerable gas pains you can get early on. Don't walk hunched over, but staighten up slowly before your fist... [ more ]
Nora S. Got knocked off the internet. Anyway, my family doctor will be able help me. Was the 2nd of the 3 surgeries this difficult on others and if so, what did you do to get the pain under control. My skin even hurts, I have to wear big pajama pants that have stretched out elastic waist bands, can't tolerate it touching my skin. And how long after the 2nd surgery did the output in the ostomy bag begin to thicken up? I've been trying to only eat, when I can tolerate eating, things that will bulk the... [ more ]
Nora S. I did not realize ibuprofen will do that. I will stop it. I thought it was a high dose anyway. I don't drink any alcohol but I don't like taking lots of Tylenol either so I cut back on that. I'm having a difficult time getting the pain under control, the pain meds they sent me home with, I can't even tell if they're working. i see my regular family doctor tomorrow and she'll get me to where I can function [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
What do probiotics do for you?
S samlc25
samlc25 Thanks Jan! After taking a probiotic for 4 days now, I don't think they are for me. I'm having more bm's and having difficulty emptying. [ more ]
Jan Dollar I think what Scott was referring to was that the terminology of digestive health is not used in the medical field (as it is vague), and is mostly used by those selling supplements. This is OK because supplements cannot be marketed to treat a disease. Unfortunately, there are numerous probiotic products out there, some of better quality than others. Plus, few have been studied in those without a colon, which makes the workings of our gut very different. For the most part, any that were... [ more ]
samlc25 Is that your opinion or a documented fact? [ more ]
See all 8 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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