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J-Pouch ForumsGeneral Discussion
stress
F F-TOY-120
Mema 1 Stress does the same thing to me to. When I get stressed my stomach starts to growl and I get major shooting gas pains. TE Marie, you're absolutely right about taking a deep breath, but it's so hard to remember when you're doubled over in pain. When you take the breath it releases some of the stress for sure. I'm going to start to meditate and see if I can't get rid of some of my stress. Actually, when you start to meditate that's what you're supposed to do, take deep breaths in the... [ more ]
TE Marie I know it is hard to reduce stress as we run in to it at every turn. I have been taking deep breaths, where your stomach moves as you are filling up your lungs up completely, and it's helping. I can only speak for myself but it releases my body from a tensed up feeling to a calmer one. Practicing deep breathing during the day's helped me relax but also realize just how tightly wound I am. That's what helps me - but I'm one tensed up stress ball of nerves [ more ]
F-TOY-120 Thanks for the feedback, i believe stress is on of my issue with my pouch, stress is can make people very sick [ more ]
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J-Pouch ForumsOstomy & Skin
How many people wear one?
MysticobraMysticobra
Mysticobra Jan. I will definitely bring g it up. I have been keeping a diary of what I eat for a week. Pretty well the same thing with different meat involved each week. I will ask. I will most likely have to see a dietian to get myself straightened out on that subject. Thank you. Seeing how I can tell pretty well in a day how things affect me it should not be difficult to figure out. I had some grape juice this morning. Like you suggested. Around 11 and at 8 30pm I had formed really dark stool. Have... [ more ]
Jan Dollar Variety is the spice of life...and health! Yes, something to look into. After a year or more of a limited diet, your reserves can definitely become depleted. I am not saying that a nutritional deficiency would likely be a primary cause of your symptoms, but it could make them worse. Many nutrients are necessary for normal nerve function. Physiology is very complex. Jan [ more ]
Mysticobra I definitely will have all that checked. I am taking notes for my next appointment. I never thought as my diet that limited but I guess it is. [ more ]
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J-Pouch ForumsGeneral Discussion
leakage, nothing but liquid
F F-TOY-120
Scott F Most people with pouchitis can clear it up with 10-14 days of Cipro or Flagyl. Symptoms tend to improve within a day or two for many. There are more difficult cases of pouchitis that need longer or continuous treatment. Those folks are the exception, but we're often found here, for reasons you might expect. [ more ]
F-TOY-120 If it is pouchits how long does it last [ more ]
F-TOY-120 Thank you [ more ]
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J-Pouch ForumsGeneral Discussion
Continue lomotil or not?
slightly_creativeslightly_creative
Lesandiego When I was about 6 months post takedown, and after two bouts of pouchitis, one hernia operation I started taking only 1 probiotic a day. My surgeon wants his patients as drug free as possible and so do I. Bentyl and lomotil did nothing for me anyway, since my problems were pouchitis related. I also take 900 mg of neurotin a day (for non j-pouch related reasons) and Unisom to sleep. I sure miss my Advil, but it caused me to bleed. I have been doing 98% great since January. My two bouts of... [ more ]
Jan Dollar It is fine to continue lomotil or Imodium as long as you need it. They do not harm your body. You probably don't need much bowel slowing (if any) while on antibiotics, so taper off as needed. Many of us wound up getting sort of constipated this way. I always stop my Imodium while on antibiotics as the stool becomes more thick. I have beepn on Imodium for 19 years without issue. But, I take far less now. I don't judge my pouch success on how many pills I take, but on how I feel. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch Surgery- one step but Unique- two crazy questions.
C Crazy1
dawn58 Because of a surgeons mistake, I had an ileostomy for 7 and 1/2 years instead of 7 months. I had takedown a little over 2 months ago and have to say I am doing great. I have control and go about 4-6 times a day. As for changing the diagnosis to Crohns, a quote from a few doctors I know, "nothing like bringing on a Crohns diagnosis like a working jpouch." The reason for this is because stool now just sits in your pouch, unlike before when it would all come out. That being said, I would still... [ more ]
Scott F That's a tough road, Crazy1. You've bundled up a bunch of questions here. 1) J-pouch option? 2) One-step? 3) Crohn's risk? 4) Depression. You might be a fine candidate for a J-pouch. A consultation with a skilled surgeon would be the next step. As Pluot wrote, attention to your sphincter strength would be part of a good assessment. I don't know how close to Cleveland you are, but the Cleveland Clinic would be a brilliant choice if you can swing it. It wouldn't hurt to start doing kegel... [ more ]
Pluot The big concern after having an ostomy for 10 years is that your sphincters may have lost too much strength to have a good outcome with a reconnection. No one can tell you over the internet if that has happened -- you'll need to visit a surgeon and have an anal manometry test done. As far as a one step, it's a risk that you and your surgeon have to be comfortable with. People with UC tend to have slower healing and therefore an increased risk of anastomotic leak. I would be very, very wary... [ more ]
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J-Pouch ForumsGeneral Discussion
IPS?
Mema 1Mema 1
Mema 1 Thanks everyone for being so helpful with your advice. So much appreciated!! Now I just have to figure out what to do about the narrowing and the cramps that I'm getting from it. [ more ]
CTBarrister Donnatal is milder than Bentyl and Levsin but it's designed to treat the exact symptoms you are complaining of. I used it to treat spasmodic bowel/pouch and found it to be effective. My issues were triggered by eating, the act of which would trigger excessive peristalsis. Your issues seem more related to anxiety and stress and therefore an anti-depressant might work better, but Donnatal is worth a shot. Good luck. [ more ]
Mema 1 I've tried the Bentyl and the Lesin, Scott, and they didn't do a thing for me. Haven't tried the Donnatol, but would think that since it's the weakest of the drugs, doubt if it would do anything for me. As I said before, I'm not even sure that it's IPS that I'm treating. I just know that whenever I have any kind of stress whether it be good or bad stress my stomach starts to groan and growl so everyone in the room can hear and the gas pains start...if that's IPS, then that's what I've got. [ more ]
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J-Pouch ForumsGeneral Discussion
help jpouch surgery post 2 days
H Hawker
KOB Hawker, I cannot tell you if what you are experiencing is normal, but according to my surgeon and the associated interns etc it isn't. I had my reversal on 15/10 and went home 17/10. Some pain for a few days around where the stoma incision was sewn up, but apart from that relatively pain free. Now 2 weeks and two days after the surgery there is no pain at all and hasn't been for the last 10-12 days or so. I use metamucil 3 times a day and the stools are relatively formed. Metamucil is your... [ more ]
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J-Pouch ForumsGeneral Discussion
A massive dilemma
ManchesterManchester
Manchester Please don't get me wrong. My wife to be is extremely supportive of me having the surgery and postponing the wedding. It is me that is unsure as I know it would devastate her but she would rather me get better than have a party. Also, the NHS really is that bad. I emailed my gastro to explain that I was in a bad way and I needed surgery and I insist I speak with my surgeon ASAP. That was 1 month ago and last week I received a letter to say an urgent appointment has been made to see my... [ more ]
skn69 Why do you think that you will not be in good condition for the wedding??? Or are you more worried about the wedding night? If I were you (and I have been there or pretty close to it) I would see when the next possible surgery date is, when was the soonest that I could take my poor pouch out and start packing my bags...did you mention cancer? Did you mention the dangers of cancer to her? Why in the world would you wait and live with the horrors of the unknown, the pain and discomfort when... [ more ]
ATXGuy I can't answer anything else on this, but I will say that any potential spouse/partner who would be more upset over a cancelled party than the possibility that you would suffer is maybe a poor choice. The ceremony & reception are nice, but marriage is about the promises made--and hopefully kept--between partners. [ more ]
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J-Pouch ForumsGeneral Discussion
sugar free vs. with sugar metamucil
D dawn58
CeeeeCeeee I love Metamucil and use the sugarless variety when needed. Typically, I no longer use it regularly. I am over 10 years post takedown. However, when I feel I need more comfortable b.m.s, I either use Metamucil or eat oatmeal. They both seem to have the same effect on me. How easy is that treatment!!!!! [ more ]
dawn58 So far I have only tried the orange smooth metamucil. I take a tablespoon diluted in a few ounces of water before or during each meal. I will let you know after I try the Kirkland brand. I think the result may be different after takedown than it is with the loop. [ more ]
KeepMovinOn Thanks for the tip on the sale at Costco! I use the same kind you do and have not tried the others yet, except for the smooth vs. the original coarse. I did not do as well with the smooth. Can I ask how you take the Metamucil? Do you take some before every meal and how much? I still have my loop ileo and have been trying to experiment before takedown, but have not had a lot of advice from the doctors in this area. I will be interested to hear if the non-brand name works as well for you! May... [ more ]
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J-Pouch ForumsGeneral Discussion
CT scan showing soft-tissue nodules
B blufnger03
CeeeeCeeee Your physician sounds like my dermatologist. Everytime I see him to have something checked he tells me what it could be and ALWAYS says, "It could be cancer." At first I panicked. Then, I realized he had to cover his you know what! Of course "it could be" just about anything. I no longer let his statements regarding cancer bother me. You have done all the right things and the odds are probably on your side....it probably isn't cancer. But......even if it is......it sounds as though you have... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Question about Cdiff test and vancomyacin
O oonja
vanessavy I test positive when I had it on Flagyl. Vanco is the only thing that worked on me to get rid of it. [ more ]
Rebe0505 hmmm dr. shen never told me to stop my antibiotic when i suspected c-diff..i just took test asap right away..i was neither on flagel or vano at the time maybe thats why,, ive had three bouts of it in 7 years just tested when i thought i might have it..in fact have tested various times if something goes wacky..dr shen says test ..i`m still here so i guess it works even if not off the antibiotic at time..but again it was not flagel or vano which are used for c-diff...i too take ss boulardii as... [ more ]
TE Marie I was always told to be off of antibiotics for 14 days in order to take a c.diff test, other wise the test will read as a false negative. I'm pretty sure the treatment is more aggressive for c.diff. Sorry you are feeling so bad, c.diff is nasty, I speak experience. I take s.boulardii, to prevent against c.diff, along with my VSL#3DS and order it online. It's cheap compared to VSL#3! [ more ]
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J-Pouch ForumsGeneral Discussion
What to do?
MysticobraMysticobra
Lambiepie I agree. I just started the fiber two days ago. I think I was just so surprised when I saw what came out of me - it's been a long time since I saw it look like that! Having said that, I'm used to loose. It's not any harder for me to hold in and more formed usually means more gas and more straining. I'm just experimenting. [ more ]
Mysticobra Thing is I don't mind loose stool. I know everyone tries to find a middle ground on it but why? I would rather have it loose cause anything thicker seems to be difficult for me. I have trouble passing it. I think I have some of the cookies here. Just for the heck of it I may try one. Thanks. Richard. [ more ]
Lambiepie Metamucil wafers give me fully formed bms. You just have to be careful to find the right balance between too formed and too loose. The plus is that they are delicious. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
RV fistula and burping type air coming out of vagina
C clouseau
AllyS237 I have had a similar experience - it didn't start happening until about 3 years post J-pouch. I notice that it only occurs occasionally when I have to empty the pouch. I mentioned it to my GYN because I was worried about a RV fistula. She took a look and said everything looks good. So maybe it just happens to some people without having a fistula and occurs from things shifting in the pelvis? I'm not sure but thought I would share my story! [ more ]
GinLyn Yup, had this all the time with my R/V fistula, sometimes quite embarrassingly.... Gin [ more ]
Pluot I have the same experience as JHendrix. My GYN tells me that a lot of her patients who have had children report the same thing, as pregnancy can shift the contents of the pelvis and changes the shape of the vagina. As long as there's no fecal leakage through the vagina (which would be frank leakage or indicated by pain, bacterial vaginosis, etc) it's most likely nothing. [ more ]
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J-Pouch ForumsGeneral Discussion
Any Nurses - Blood Test Result Questions
J JessGoguen
Jan Dollar Gallstones can be a cause of pancreatitis, as stones can block the common duct. But if you had a stone in a duct, you'd be way sicker than you are, and your labs would be much higher. More likely inflamed ducts from chronic gallbladder "sludge." The MRI should sort this out. Glad you are finally on the right path to finding the source of your problems. Chronic pancreatitis is more insidious, so more tricky to nail down. Jan [ more ]
JessGoguen Thanks Jan, Confirmed by doc that it's definetly some inflammation in the pancreas. GI is scheduling an MRI. I have been having upper abdominal issued for the last 10 months. Everything point to gallbladder and my upper abdo pain has always been deemed gastritis. Hopefully we figure it out because eating sucks and sleeping isn't any better. [ more ]
Jan Dollar Could be a mild case of pancreatitis. That would explain why Prilosec did nothing for you. These numbers are not that elevated, and that may be why your doctor did not have pancreatitis on his mind at first. However, the fact that he did test for pancreatic enzymes means he had an inkling... Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Question about a scope
J JHendrix
JHendrix Thanks for these responses. It is clear that since I have no (well other than the ongoing wondering if things are normal) issues and did not have dyplasia,it is reassuring that a scope would not be done until one year post op. It just seemed like people were getting scoped sooner and more frequently. I am grateful I don't require more. thanks. [ more ]
CTBarrister I have it done annually due to chronic pouchitis in the pouch and dysplasia in the colon when it was removed. One or the other being present in your history should dictate a regular annual or biannual schedule. However, if no pouchitis is present and you did not have dysplasia at the time of colectomy, it does not need to be done once every one or 2 years. [ more ]
Dog I'm supposed to get one every 2 years, but my medical plan has a $5000 deductible so I can't afford to have it done. Curious that a pouch scope is not on the same level as a colonscopy, which is covered 100% with no copay (I think) as mandated by law. [ more ]
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J-Pouch ForumsGeneral Discussion
Where to stay when going to the Cleveland Clinic
marriedguymarriedguy
vstRN Doubletree Tudor Arms Hotel. It's very close to the clinic and from what I remember, I think they give a Cleveland Clinic rate. [ more ]
Lambiepie The InterContinental Hotel and Conference Center is where I booked a room for two nights (but cancelled, but that's neither here nor there): 216-707-4100 or 877-707-8999. They have a concierge service for options regarding getting around: 216-707-4194. They're all very accommodating. [ more ]
Dort If you go to the Cleveland Clinic site they have information on lodging. Unless of course you are looking for recommendations. Good luck with your appointment. http://my.clevelandclinic.org/...spx?filterId=Lodging [ more ]
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J-Pouch ForumsHelp! Need advice now!
Gallbladder, stricture, obstruction?
AshleyAnnAshleyAnn
AshleyAnn Thank you for replying! I hope it's something that can fixed like a gallstone instead of it being a stricture. Not that either one are good to have! I'm sorry to hear you went through that. I'll keep y'all posted!!! [ more ]
skn69 Hi AshleyAnn, Yes, I had the nausea, vomitting green bile, back pain (like someone was stabbing me in the middle of my back), horrible headaches, burping etc...it turned out to be one very big gallstone...that was blocking the passage of the bile duct. It took years to finally give in and have it out but the awful feeling went away within days of having it removed. I still get occasional nausea when I am running on empty...Around noon if I haven't had anything to eat...or if I eat fried... [ more ]
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J-Pouch ForumsGeneral Discussion
Stomach Bug Advice!!!
RL Rev Lenny
CTBarrister Speaking of which, I am sick right now (common cold I think as I got the flu shot) and made chicken soup in the crockpot, and salted it up pretty good. I cooked it for 18 hours - chicken breasts, onions, carrots, celery, parsnips, turnips and zucchini. At the end of the 18 hour cooking process I was left with a very rich and intensely flavorful broth. The beauty of cooking chicken soup in a crockpot or slow cooker is that the soup is not "boiled down", and therefore broth is not wasted. [ more ]
CTBarrister I totally agree, if it is a stomach bug the last thing you want to use is loperamide as all it will do is prolong the agony instead of allowing your body to rid itself of the toxins through the natural processes of diarrhea and vomiting. This is how your body naturally expels things it does not want inside, so why counteract those processes? As I mentioned in another thread I recently got sickened from eating steak tartare and felt intense nausea for a period of time, dry heaves and then... [ more ]
Jan Dollar Yep, especially if this is bacterial rather than viral, bowel slowers prolong the illness and intensify the gut damage. But, if you are pretty sure this is the common norovirus, then bowel slowers are OK, since there isn't the toxin release you get with C. diff. Salty broths are better than plain water, if you can tolerate them, or non-sugary hydration drinks, like Pedialyte. But, realistically, if you are so weak you are nearly passing out, you need IV fluids. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Please have mercy on me & give me whatever advice you have!
M MaryMomof3
Ljz Mary, I think it would be great to do a sphincter test so you will know what's ahead, and hopefully be reassured. My take down was in March. I had leakage the whole time with loop ileostomy, though it was lots of mucous, bile and stool. I, too, was worried that I would leak after takedown, but my surgeon assured me that it would not. Digital exam showed him that my muscle was tight enough. Sure enough, I am continent, even when my output is all liquid! That said, it was a process, not... [ more ]
MicheladelfinaTX I had the discharge with my ostomies, too, but it wasn't as bad after takedown. The first few months will likely be rough and frustrating, but be patient with your body as it learns how to handle food again. In the early days, having half a banana and some peanut butter before bed helped me from getting up a lot, and I slept with a leak pad under me in case of accidents (just like the kind they have in the hospital). As the months go by and you learn to train your muscles more, it will... [ more ]
MaryMomof3 Thank you all so much for your responses. You are all so brave & strong. I am going to take your advice & tell my surgeon how nervous I am re leakage & ask him about my sphincter strength .....I will keep you posted. Thank you for the encouragement. [ more ]
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J-Pouch ForumsPouchitis
Pouchitis and Treatment and Pouchoscopy Questions
B blufnger03
CJB Alana, I have NO prep whatsoever for all my j-pouch scopes. No matter what time of the day it is. I poop before I go in, although she has never even asked me to do that. She suctions out poop if she has to while she's in there looking, but it is never anything substantial. Every doctor seems to have their own preferred prep requirements. I actually like it that my surgeon has none. You'll do fine! And it does sound like pouchitis to me also. Hope you feel better soon. Cipro has worked well... [ more ]
blufnger03 The doctor isn't planning on doing an enema on site... My procedure isn't until 2:30pm in the afternoon. Also, they aren't planning on doing sedation... should they be? [ more ]
TE Marie They usually tell me nothing to eat or drink but clear liquids after 7 or 8pm and they have me do 2 enemas. Sounds like your way will be a good one. Go in lay down, go to sleep, wake up and all is done [ more ]
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J-Pouch ForumsPouchitis
Doing great but confused!
puffadderbitepuffadderbite
Jan Dollar Puff uses hydrocortisone enema daily, so also using the suppository might be overkill in regard to topical steroids. Jan [ more ]
TE Marie I take temazapam too and it keeps me from getting up during the night. I understand what you are saying as I take it sparingly too. I say it all depends on if you need to be somewhere at a certain time the next day. If you do, as in work, then I agree with Jan's idea. I also think the burning could be from cuffitis and you might need a suppository nightly instead of a sleeping pill for a while. Anucort is pretty cheap and if it works it will keep the burning away. If you had a bad case of... [ more ]
puffadderbite I just still cant believe it..ive tried so many drugs..I take just a small ammount of this Tamazapam..if i dont take it..during the day..i get burning..diahreaha..itching..misery. If I take it ..I sleep good..and during the day I have no rectal pain or nothing..it must be relaxing the muscles in the rectum (like you said) [ more ]
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J-Pouch ForumsPouchitis
CMV virus
O OKSTFAN
katenet I developed CMV Colitis in 2003 and had an emergency total colectomy as it was in my bloodstream. I was treated with TPN and IV Gancyclovir. At that time CMV disease was not common in patients with IBD and was mostly seen in those who had transplants or had HIV/AIDS. I get tested for it now in my pouch and am glad they are investigating this more carefully. [ more ]
Jan Dollar CMV infection is mostly associated with being immune compromised. The case noted in the article in this link is typical. http://onlinelibrary.wiley.com...9887be41901a83b2dbb0 What I find as being rather bizaare is the fact you were treated with 6MP, another immune supressant, when antiviral meds are the only treatment specific to CMV infection I have ever heard of. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
How long does immodium stay in the blood?
I iHateColitis
Shainy interesting topic I currently have a loop ileostomy (in between stages 2 and 3) so have quite a lot of output. quite often I won't take any immodium, I do empty the bag fairly often, but I eat and drink absolutely everything, including coffees etc. I am very active, do a lot of running and boxing so I think I would feel it if I was dehydrated but I seem to be fine. however sometimes the output gets too liquid so I usually take one immodium a day and that thickens things up a lot. to the... [ more ]
Jan Dollar Yes, if you have developed dependence, and stop suddenly your gut symptoms may return (not a given, but may, especially if you really still need the drug), plus you can get other withdrawal symptoms typical of opiate withdrawal, like anxiety, aggitation and sweating. But, I would expect this only after high dose, long term use. Hence the reason for tapering. Better than just toughing it out, in my opinion. When I was taking more than one a day, I would tKe it when it was convenient for me,... [ more ]
iHateColitis Jan, Thanks. So by dependence vs. tolerance, you mean that if I abruptly stop, it will be difficult initially, but it will adjust back? Also, how do you usually spread yours out? [ more ]
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J-Pouch ForumsK-Pouch Korner
Back to Mayo Clinic for another insert....
J Jasmine 2
Jasmine 2 Yes, I have been so lucky with my Kock Pouch. I have been very blessed indeed. Since my valve doesn't leak, I'm really thinking I will probably try another dilation if needed. This catheter I have in now will definitely scar with a good opening because of the stiffer catheter. So it's a wait and see. I am still so for the Kock Pouch! I wish they would come up with a valve that didn't have issues. They need to take a good look at the valve I had made by Dr. Beahrs, that was quite the valve. [ more ]
Jan Dollar Yes, very fortunate. You definitely beat the odds! Fingers crossed this does not turn into a major valve revision. But, even if it does, you still had a super great run with your current valve. You should be proud! Jan [ more ]
Jasmine 2 The catheter that was inserted in Interventional Radiology: is a 28 Fr BARD Urethral Catheter, Ref #056128. It's Red Latex Radiopaque, it has 2 holes, smaller than my 30 Fr Marlen Catheter. It is a stiffer catheter with a tapered end. I thought I would mention it on here, in case anyone is having trouble with insertion and wants to have one of these in their supplies, just in case. I have a stricture right before the valve. So I will see what the Surgeon wants to try next after the... [ more ]
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J-Pouch ForumsGeneral Discussion
Fecal Incontinence worsening in the winter?
S struggling
struggling I haven't tried fiber wafers per se, though I have tried other thickening methods like psyllium husk powder. Lately I noticed that even when things are thicker I still have major incontinence issues at night. [ more ]
marriedguy There are many things you are likely able to help control things with, but have you tried fiber wafers? Wondering if maybe there use may thicken things up enough that fecal incontenence may not be as much of an issue. May be worth a try (if you haven't already tried this route) as a first defense as it doesn't require any sort of drug or lifestyle change. [ more ]
rachelraven I've had more problems, though minor, with pouch issues around the holidays and colder weather because I eat differently, and believe the increase in holiday festivities and especially increased sugars are the culprit. Much better when I tone it down. [ more ]
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J-Pouch ForumsGeneral Discussion
Sickness leading to severe dehydration
marriedguymarriedguy
Jan Dollar It sure sounds like some sort of seasonal allergy thing, unless you habitually eat the same tainted seasonal food this time of year. You'd think your local docs could pin this down, but yeah, if you can, try to see Dr. Dhen, since he's seen more troubled pouches than anyone. Reminds me of my brother who used to get laryngitis every Halloween. Yep, seasonal allergies that morphed into bacterial infections. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Moon Juice
L LisaT
Jan Dollar Everything I have read indicates that there really is no such thing as a toxins cleanse. Your body naturally detoxifies constantly and you don't need a special product to do it. Everyone wants some magic/miracle food, but there just is no such thing. That said, these product seem safe and OK to drink, but I am not sure why they'd be better than whole, fresh food. I looked at the website. These are NOT colon cleanse products (like the much maligned colonic irrigations), so that makes me... [ more ]
Scott F All of these things seem like potential trouble without a colon, but I'll admit I'm not a fan even for the coloned. [ more ]
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J-Pouch ForumsGeneral Discussion
Peeing too much?
skn69skn69
Jan Dollar First, get the diagnosis before you get too worked up about it. But, basically, it is about having portion control, and vegetables comprising half of your plate (protein and carbs each taking a quarter). http://www.diabetes.org/food-a...-a-healthy-diet.html Once you cross over to diabetes from prediabetes, it is always your diagnosis, even if you don't need medication. I lost weight and maintain my normal HbA1c by diet and exercise for the past 4 years, but I am still diabetic. Jan [ more ]
skn69 What was their advice, diet-wise, in the begining Jan? I am doing my six small snacks a day thing (or as close to it as possible), cut out about 85% of the sugar, breads etc and am not touching white flour (the occasional multi grain) and divide my intake between apples, veggies, nuts, light proteins and fruits. Tons of water though... Can you 'get back' from this once you are at the edge? I am 10lbs 'overweight' and walk about 1hr/day plus all the other activities. Not sure what else I can... [ more ]
Jan Dollar Both my husband and I have type 2 diabetes. His is more advanced than mine, but neither of us require insulin (yet). I am diet controlled and he takes multiple oral meds. A lot has changed in the past few decades. They are much more aggressive in diagnosing and treating now. There is no such thing as borderline any more (just prediabetes and diabetes). It is an autoimmune disease, not just a lifestyle disease. You can have thyroid dysfunction with it, but they are separate problems. It is... [ more ]
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J-Pouch ForumsGeneral Discussion
My latest UC theory-Call it part X
Old Mike,Glenns DadOld Mike,Glenns Dad
Goody2shoes This might help - http://www.livestrong.com/arti...in-resistant-starch/ or google foods high in resistant starch [ more ]
Ljz What are Resistant Starches? In foods or separate food? [ more ]
_Dan_ I'm replying to this old post because its the only one on the forum I can find that mentions Resistant Starch. Although you suggest that the information may save a colon, it may have just saved a pouch. I have been taking resistant starch for the past 3 weeks and the results are pretty remarkable. I've not had calprotectin results back yet but it is obvious the benefits this one small dietary change has made. Coupled with psyllium powder my output has never been as good. Digestion is clearly... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Living with fistula after takedown
D dawn58
GinLyn Hey, Dawn; I'm sorry to hear you're dealing with this! I'm currently fistula free but lived with an R/V fistula for 4 years. My doctor advised no tampons for exactly the reason C-jay outlined; holding fecal material in the vagina for any length of time is not good. For most of the 4 years I simply needed a liner, and many days that wasn't even dirtied. Toward the end I needed pads, but that was after complications had arisen. Sex is fine, but you might want to follow some precautions. [ more ]
dawn58 hi c-jay, I sent you a pm. [ more ]
CJB Dawn, I've lived with an RV fistula for almost 8 years now. But my pouch is almost 19 years old. I do wear a panty liner at all times and would actually discourage you from using tampons. If stool is leaking from your vagina, I wouldn't think it would be a good idea to have a tampon absorbing the stool and staying in there for hours at a time. I don't take antibiotics and have never got any type of infection. I am careful though to keep myself clean. My vagina does get irritated... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Calprotectin test
BB Burning Brian
rachelraven C diff causes a "colitis" in the colon, which is inflammation, so it's be the same in the small bowel, too. [ more ]
Burning Brian Thank you both. That helps ease my mind some. My GI Doctor had mentioned the possibility of C diff. I have been exposed to it in the past couple of years many times while taking care of my mother in the hospital,,,hmmmmm. Others throw out the word cancer too easily. Thanks for being here, all of you. [ more ]
Pluot C. difficile infection causes elevated calprotectin levels as well. C. diff has to be ruled out before assuming the inflammation is due to IBD. Furthermore, all the symptoms you described could be due to C. diff. I had it twice with my pouch and everyone thought it was "regular" pouchitis until the stool test came back. Once I had the right antibiotics, I was back to normal! Good luck. [ more ]
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J-Pouch ForumsGeneral Discussion
Needing To Hear from other Old Timers
M MissTiff
CTBarrister I also got my J Pouch done at Mount Sinai Medical Center in NYC in 1992, same day as KangaRoe and by the same 2 surgeons. If I recall correctly my step 2 was done the same day as her step 1. My issues in these 22 years have been a little different - chronic pouchitis for 20 years treatable with rotating antibiotics. I have remained fairly consistent in my responsiveness to antibiotic treatment with the exception of a 2 year period 2011-2012 when my diet was poorly controlled. I had similar... [ more ]
KangaRoe I got my pouch in 1992 also. I was having trouble like yours in 2008. I had narrowing/strictures of both the inflow and outflow areas of the pouch. I needed a test called a "retrograde j-pouch study" to find out what was going on. It is a test where they put liquid up your rectum into the pouch and a little beyond and take x-rays to check the functioning of the entire pouch. I myself had to go to Mount Sinai in NYC (a very big medical facility) where they are experts in people with Crohn's,... [ more ]
Fosty It's a simple procedure. Just small tubes that you can insert with a syringe of water. You need to lubricate the tube first then insert. It empties the pouch quite well. I was having narrowing issues and unable to empty sometimes. My surgeon who is new to me as my old one moved on was ready to reverse the pouch! She consulted with my old doc who suggested irrigation first. Thank goodness! [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Numbness at incision site
lholdemlholdem
skn69 CT, Please don't test your theory! Sharon [ more ]
CTBarrister What is completely dead to the touch for me is the area where the stoma was. This area was allowed to heal by the granulation method, rather than stitched, as my surgeon believed that sutures needlessly exposed me to infections. What I have there now is a big oval shaped scar, which has no sensation at all. There are no nerves or anything there. Just a big mass of scar tissue. I suspect that if I was stabbed through that area, I would not feel anything. [ more ]
Spooky This is not at all unusual. Don't forget, your skin, muscle tissue, and nerves were all cut during surgery. I still have a small patch of numbness/reduced sensation at the old stoma site. It was much more pronounced in the immediate aftermath of surgery; it gradually improved but I still have reduced sensation on and right beside the scar (i.e. the area between the stoma site and my central incision line, and on the stoma scar itself. I would estimate the affected area is less than 1 square... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Cleveland Clinic cant get glue ??? lol
PouchomarxPouchomarx
Pouchomarx GOOD LUCK, I THINK MINE HAS RUN OUT, WE WILL SEE..ALTHOUGH I HAVE NOT HAD LUCK SINCE DAY 1. [ more ]
dtmack Poucho, Full open again. My pouch had expanded a bit, making the removal of the tip much easier. He fully stapled and stitched the tip together, took down my complex fistula , and put me back together. I told him prior to surgery if he did not feel 90% certain the repair/revision would work, remove it. If a new pouch could be put in, do it. If not, permanent ostomy. I am almost 3 weeks out and just waiting to see what happens. Very nervous. Can't let myself get to hopeful because i do not... [ more ]
Pouchomarx dtmack, what kind of revision repair did you have? Shen tried the new endo stitch but failed cuz not flexible enough to get where it needed to go. ended up having surgery and surgeon stitched off the tip of jpouch a few inches below the hole. 6 weeks later went in to shen for my sinus procedure and stated my hole was still there, even after surgery. My intestinal tissue is just weak and it didnt hold. I hate this ostomy bag more than anything but i refuse to have surgery to get the redo. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Pouch changes
rachelravenrachelraven
rachelraven Yes, we know there could be, and I've had dilations for that. On treatment now, things are WAAAAAY better. I am open, the dilator passes through. The abatement of symptoms happened after I started the high dose of Medrol (48mgs). There WAS narrowing there, yes, but he thinks it may likely be related to inflammation, especially since I developed a perianal fistula and an inflammation marker, like with perianal Crohn's type disease. We are looking at both sides. We haven't "ruled in or ruled... [ more ]
Grieving Old pouch Rachel I have to respectfully disagree with Jan’s last post. Based on my experience, you should not rule out a structural problem. I experienced minimal problems with my first pouch for nine years, but then started experiencing issues similar to yours, and others, discussed in this thread. As mentioned earlier in the thread, it is common for the intestine to narrow and develop adhesions and strictures over time. This is what happened to me. It was not obvious on the imaging, but my surgeon... [ more ]
Jan Dollar This definitely is sounding like it was an inflammatory flare and not structural, like a stricture. Glad things are simmering down for you. Hope the Humira kicks in. I wound up having to take it weekly when I was on it. Jan [ more ]
See all 83 replies...
J-Pouch ForumsGeneral Discussion
How Am I Doing?
S struggling
Lambiepie I was on Cipro for several months and when that stopped working, Flagyl was added. After that, it was mix and match antibiotics. My symptoms would return as soon as I tried to go off an antibiotic. [ more ]
struggling Thanks for the response Lambiepie, I appreciate it. I'm wondering when you mention that you were put on Cipro was that just for a few weeks or something you were on long term? Because I have taken Cipro (along with another anti biotic which I can't recall) for about 12 days which did help, but after I stopped things come back to the way they were before. I will try the other suggestions that you wrote and will call my doctor and see what he recommends. [ more ]
Lambiepie Hi Struggling, you are about at the same point that I was post takedown when I was put on Cipro and finally experienced what a "normal" pouch felt like. I struggled for five or six months with everything you described. There is an adjustment period, but there comes a point when you just need some help. As far as consistency is concerned, I find that Pepto Bismol helps to form things just enough (too formed and there's straining.) Your bleeding suggests cuffitis, which can cause urgency as... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Just had my consult today with the surgeon, and he scared the heck out of me.
P PSH
KOB As JJA posts, you get a lot more 'issues' posts on forums like this so it may seem there is a disproportionate number of problems. You also get people like you (and me) who are new to the game seeking advice and reassurance. I read (somewhere) that 40% of J-Pouch surgeries go off without issue, 40% have some issue, 15% have major issues and only 5% revert to a permanent ileostomy for whatever reason. If that's the case you are looking at 80% with no or minor issues. Those odds aren't bad... [ more ]
Dog Just thought I'd pop in and state that I have had zero issues with my pouch. Zero. I eat anything I want, anytime I want, no leaks, no pain, no cramps. [ more ]
Jan Dollar What a great turn around! Even if a surgeon is technically the best next to God, if you do not feel that necessary rapport, or you feel like a hot potato being passed around, you are not going to come away feeling confident about your surgery. It is a special talent to be able to advise you of potential complications and pitfalls without making you feel they are likely to happen. Some people think the bedside manner is obsolete, but I feel that it is an important attribute in any physician. [ more ]
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J-Pouch ForumsGeneral Discussion
Senior Pouchers
Kathy AKathy A
KOB Here in OZ Lomotil is available both as a prescription med and over the counter. Because of the way our heath system works it is cheaper, but less convenient, to get it via a prescription (on the PBS register). Regardless, both my GI Doctor and surgeon say lomotil is fine, but do not use on a continuous basis. Not because of any health aspects, but because (they say) it ceases to work after a couple of uses. they say its purpose is to hit the gut and do what it needs to do. The surgeon said... [ more ]
Rev Lenny My S Pouch has been an awkward addition to say the least! Its now been operational for 10 years and as I age it is becoming a nightmare! My final visit to the throne to empty the pouch can take up to 5 hours! I am now seriously looking into pouch irrigation as it is now taking its toll on my back, I am due to have an MRI to see what is causing the problem. A few months ago we moved into a bungalow where the toilet is much smaller than the previous one and is causing me severe back pain and... [ more ]
Scott F Lomotil is labeled as contraindicated with liver disease. Imodium is labeled as "caution advised" with liver disease. [ more ]
See all 22 replies...
J-Pouch ForumsGeneral Discussion
lomotil
G GraceB
GraceB Thanks CT I will call my doctor tomorow [ more ]
CTBarrister Grace- I am not sure if your issues relate to a spasmodic pouch, especially 4 years out from takedown. It sounds more like issues related to the strictures and meds which may be thickening your stools beyond what is appropriate, if in fact the stricture is not preventing absorption of the meds, as Scott suggested. It also could be SIBO/pouchitis. However if the spasmodic pouch symptoms I described fit your situation, it definitely should be discussed with your Doctor. I would also ask your... [ more ]
GraceB I forgot to mention ct suggested anti spasmodic I have to ask my doctor about that [ more ]
See all 11 replies...
J-Pouch ForumsGeneral Discussion
Gotta ask...
ATXGuyATXGuy
Lambiepie Ditto what everyone else said. Plus, if I skip food for too long, I get a whopper of a migraine so it's so not worth it. [ more ]
mgmt10 It doesn't matter what time I eat dinner. It's more WHAT I ate for dinner that would make a difference. I could eat at 5pm or 9pm and I would still get up my usual once at night to go. [ more ]
skn69 I tend to eat at around 8 pm with hubby most nights and after 9pm when I work late. It is a disaster for my sleep cycle and pouch because it gets very active about 3hrs after eating...if I go to bed at a decent hour then I get woken up in the middle of my sleep cycle...more than once. Kills me. So I try to only have a puréed veggie and a yoghurt or dixie cup or a piece of fruit when I get in late...or nothing at all other than a hot drink. The emptier the pouch the better I sleep...But I... [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
VSL#3
WBrooksWBrooks
TE Marie Thanks Rebecca, My Internist has many IBD patients and she recommends Align after taking antibiotics. She initially prescribed VSL#3 DS for me when I asked. I don't know if she recommends Align to non IBD patients or not. [ more ]
Rebe0505 f.y.i.dr. shen knows of both vsl#3 but still recommends align..i think he thinks that the probiotic in that bifido is the main one that needs to multiply. [ more ]
TE Marie Well said Rebecca. I've never considered the other medications I take before! I'm on the same routine as you are plus I take canasa most of the time, for chronic cuffitis, and occasionally anucort - depending on the inflammation. [ more ]
See all 31 replies...
J-Pouch ForumsPouchitis
anyone have any understanding why besides antibiotics other things tried stop workin
R Rebe0505
Rebe0505 thank the lord that bacteria does not have perfect memory and can be used again after period of time.....but i am sure others like myself can attest they do not work quite as well as time goes by.. however,presently its the only real game in town..fingers crossed something else comes along or as i heard new antibiotics are in the pipeline..anyone know if thats so? [ more ]
Rebe0505 yep as always jan says it best!!!!that was a very well written answer jan.. thank you ! [ more ]
TE Marie Thanks Jan, Your definition of chronic pouchitis makes it crystal clear and answers all my prior, current and probably future questions. I should probably cut it out and frame it [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
flagyl
D dawn58
Spooky I agree with CTBarrister. When I was taking flagyl, I did much better on the lower dose - 250mg 2x per day rather than the 400mg 3x per day I was initially prescribed. I also did better when I took flagyl alone and not combined with cipro - the two-punch combination of cipro and flagyl completely zonked me out. Cipro also makes me terribly constipated; that being said, most people do tolerate cipro better than flagyl. I'm not in the norm in that respect. As for what you can do right now, I... [ more ]
CTBarrister Dawn, Unfortunately a lot of people have the same side effects with flagyl. Are you taking it with food? You might want to try the 250 mg tabs. That is what I have. Do you have 250 or 500? It comes in both. I personally can tolerate it well, but of the antibiotics prescribed for pouch issues, it is the most poorly tolerated antibiotic of them all. Xifaxin, cipro and augmentin are other possible antibiotics you could use. On the other hand, it works fairly well. I find it works well in combo... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
Milk?
allswellallswell
dew Some people who have problems with processed milk can tolerate raw milk well. [ more ]
Scott F Sharon- I meant the diarrhea effect the other way around. Diarrhea increases lactose intolerance. And yes, lactose intolerance can show up as diarrhea, or gassiness, or ... [ more ]
rachelraven Had the breath test as a kid with my UC dx and was found to be lactose intolerant. I'm sort of "selectively" affected by lactose as an adult with a "pretty good" pouch, though. Large bowl of ice cream, large glass of milk = gas and bloating/discomfort. Cheese of almost any kind (unless really soft and large large amounts), small amounts of milk in a recipe, yogurt = pretty ok. [ more ]
See all 9 replies...

Join Us!

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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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