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J-Pouch ForumsHelp! Need advice now!
Can't pee!
EricEric
Jan Dollar I agree, this sounds like a urinary tract infection or trauma or both. Don't try to see your doc, see your doc, or at least get a phone consult going. Jan [ more ]
Spooky Eric, were you catheterized post-op? I realize the anatomy is different, but I had a heck of a time peeing initially after the catheter came out. Catheters can cause some local trauma depending how they are positioned and/or inserted/removed. You can also pick up a pretty nasty bladder infection from the cath, especially if it was in for more than 48 hours; if this is an infection, maybe you need a longer course of cipro or even a different antibiotic to clear this up. Hope you can get this... [ more ]
Eric Ops! sorry guys! I posted everything on FB, guess I forgot to post it here. Three weeks ago, I had another surgery to remove the adhesions constricting my bowel causing blockages and nausea, and he had to fix two serosal tears. I've had so many surgeries, I'm actually forgetting to tell people, I just hope it's that last for a little while at least. The surgery itself was fine, only a short one, just 3.5 hours, the recovery has been the difficult part. With each additional surgery, it takes... [ more ]
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J-Pouch ForumsGeneral Discussion
Day 3
C CathyA
Lesandiego OMG! You have an amazing little trooper if she can walk with all of those apparatuses! I am certain she will have a very speedy recovery! [ more ]
CathyA Shes got a tube going down to her stomach that ones up the nose, a catheter for urine, and iv, and an epidural in her back, it's so hard to manipulate all these wires with all they have to do, and the pulling of them really scares her. [ more ]
Lesandiego Glad to her she is progressing well. What do you mean "tubes?" [ more ]
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J-Pouch ForumsGeneral Discussion
Finding a cause of iron deficiency. Could this help you?
D _Dan_
mgmt10 Thanks Jan. [ more ]
Jan Dollar SED rate and CRP levels are nonspecific, and you can have significant inflammation without these being elevated. Plus, being nonspecific, they do not help you target treatment. They are more useful for monitoring treatment. I would suggest discussing or showing the article to your hematologist to develop an action plan. Jan [ more ]
Scott F I'd suggest a collaborative approach with the doctor. It's hard to get where you want to get to if you "insist" on a test that the doctor has no idea how to interpret (or that no one has a very good idea how to interpret). You might be better off with a referral to somone who at least reads that literature than a test that will lead nowhere regardless of what it shows. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Unknown pain
BL Bunny love
TE Marie Do they know what is causing the blood in her stools? It doesn't sound like she has cuffitis but could she have any fistulas? If not visible during scopes they might need to do an MRI to find out what is going on. Hopefully someone else that has had similar symptoms will post. Also is there any other kinds of probiotic she can take, like Align? [ more ]
Scott F Gas can certainly act that way, with the pain disappearing as quickly as it arrived. Is the gas showing up in her bowel movements? It would be fairly obvious. If it is gas, then small intestinal bacterial overgrowth (SIBO) is a possibility. Another possibility is that some antibiotics can cause bellyaches - what is she on? [ more ]
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J-Pouch ForumsOstomy & Skin
Showering
EricEric
Cataja I take the bag off and just shower with the wafer on...been doing this forever...no problems at all. [ more ]
AyrishGrl I typically put a dry bag on after I get out of the shower. It feels cleaner that way. If I am just being lazy around the house that day I will blow dry it so it doesn't stay soaking. [ more ]
Lynne2 If it's going to be just a pretty quick shower, I don't use anything, then wrap an absorbent washcloth around my bag when I get out and blow-dry on cool setting, if needed. If I'm taking a longer shower (I admit to indulging in long hot showers sometimes!), I like to fold up the bag and wrap plastic wrap around my waist to keep it drier. That is probably not necessary, but it makes me feel more comfortable because the appliance is less wet after the shower and easier to get ready to dress... [ more ]
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J-Pouch ForumsGeneral Discussion
im sure this has been posted but...
pouchingtonpouchington
Cataja My friends sister in law had this done...from what I hear she is doing quit well. [ more ]
ActiveUC'er Lalalala, I'm not listening, lalalalala. I thought other work on FT for UC had come up with less than favorable results? The UC returning after a period of time and requiring additional FTs, even when the FT worked. [ more ]
mom2panda I don't know. This study was aimed at UC patients. 80-90% is awesome! "In an earlier study, the McMaster researchers found that seven of eight UC patients responded to fecal transplants and six patients remained well one year following treatment. “We’re seeing success rates of 80 to 90 per cent. This kind of clinical trial is absolutely essential for a new treatment to become a standard of care,” says Dr. Surette, who holds a Tier 1 Canada Research Chair in Interdisciplinary Microbiome... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis/Gas/Trouble emptying pouch
M MarkBB
MarkBB Thanks for the replies guys. That test sounds like a good plan, Marie. Will ask my surgeon about it. Thanks! [ more ]
TE Marie In the mean time you might want to try to go on a more liquid/soft diet that includes white grape or apple juice and hot tea. You can see if that gets things to moving sooner. I recently went had a small bowel study. The had me drink a barium mixture and then timed how long it took to get to my pouch. They took a x-ray of before I drank it and then every 20-30 minutes. It made my small intestines look white, like cement, as it coated them on the way through. They compared it to the last test... [ more ]
Jan Dollar Just because you had a scope that ruled out stricture in the pouch area, it does not mean you cannot have strictures and/or motility issues in the 15-20 feet of small bowel between your stomach and pouch. So I'd be looking "upstream" for answers. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch surgery done
C CathyA
Murray I was back to full time work with in 11 months. so chin up. [ more ]
CathyA Wow you had a tough start, glad it all is going well now, [ more ]
Murray Way to go. I had Issues with my first surgery that slowed things a bit (slipped knot needed 12 pints of blood and a 2nd surgery 7 hours later)but sitting up on first day is great. I spent 3 days in a induced coma to give me a rest but on day 4 hours out of the coma some hard ass nurse had me up walking. so I had some fun she wanted me to walk 100 feet I pushed it to 400 ft. took all I had but she had to keep up. Enjoy the days to come most will be good some will be hard but all will be worth it. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Help please! stool is "impacted"
dgtracydgtracy
dgtracy I did get admitted on Friday morning at like 4am. They tried me on an enema with phosphorus in it and some other stuff. Something from fleetwood. Also tried me on 1 Dulcolax suppository that didn't help, then tried another suppository that had opium and something 31st in, was meant to relax bowels but nothing came of that. Fast foward to Saturday about 12 clock my surgeon showed up and they did a flex scope to go in and remove the impaction. Surgeon said it was probably seaweed from my sushi... [ more ]
skn69 Favorite cures? Mineral oil, warm water enemas, prune juice (not in enema format), large quantities of hot tea and warm lemonaide... Push fluids....lots of them, it tends to help but head for the ER if there is vomiting, sudden pain or fever. Sharon [ more ]
Lesandiego Have you been admitted? I hope you find answers soon. Keep us posted. [ more ]
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J-Pouch ForumsGeneral Discussion
Omeprazole/Prilosec
Dave TexDave Tex
Scott F I'm obliged to stay on the Zantac, for reasons unrelated to my intestines, but Zantac is easy to withdraw from. You won't get any extra reflux from the withdrawal, just whatever reflux your body is prone to without meds. [ more ]
tulsamom Thanks Scott. And then you went off the Zantac? [ more ]
Scott F I recently had reason to withdraw from a PPI again, and Zantac twice daily did a great job preventing the rebound acid. [ more ]
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J-Pouch ForumsGeneral Discussion
preventative measures re: pouch health
I iHateColitis
Scott F I'm not convinced that pouches (or colons) have a service life measured in numbers of bowel movements. Certainly the ileum isn't perfectly designed for the storage of stool or absorption of water, though it does get more colon-like in J-pouchers. Most folks with J-pouches do just fine; some of the problems are structural, when a pouch isn't built optimally, and some may be due to stool sitting around in the "wrong" place. We'll probably find out in the future that an out-of-balance... [ more ]
Mhg26 Good for you that you're doing well! I love seeing posts like yours. Helps give people hope and confidence that they can still do what they want and not always stress about the pouch. I'm pretty happy at the moment with my pouch. Even with some annoying scar tissue, blockages from time to time, or the lack of a good nights sleep, I think I've been pretty lucky with the lifestyle that I've gotten back after almost not making it with severe UC. I have an amazing girlfriend, a supportive... [ more ]
msh98991 I too am one of those J-Pouchers who's just enjoying the ride and enjoying life & trying not to worry about it. Like you, I have had a very easy time since my take-down. I eat whatever I want-for the most part-some foods like really spicy stuff I know I will pay the price for in the form of butt-burn but I still eat it. I have had little to no issues but like you I also worry that may be I should be more careful and proactive in an effort to protect what a blessing I have. I take 1... [ more ]
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J-Pouch ForumsGeneral Discussion
How to prepare for scope
M mickn
Scott F If I arrange pouchoscopy for early in the AM I don't need to take much time off work - maybe an hour or two. I just drive myself, since I choose not to have sedation. The enema the night before probably doesn't help at all, since the pouch fills back up, but the one shortly before the procedure probably helps. [ more ]
msh98991 Prep definitely differs from doc to doc. I have actually had scopes done where no prep was required. I just had a scope done last month and again, no oprep was required. I actually requested a prep because I worried that results wouldn't be reliable if I wasn't "cleaned out" completely and I'd have to have scope done again. Not that scopes are a big deal but it's a day off from work & I have to arranged a ride. After I requested a prep, doc said to just do 1 enema before bed & 1 in... [ more ]
vanessavy Some doctors tell me to do liquids. I never do. I take half a bottle of mag citrate at night and clear out before bed. I never fast. [ more ]
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J-Pouch ForumsGeneral Discussion
Leaking
SK Susan Knilans
Susan Knilans Scott, thanks for your reply. The two things you mentioned---antibiotics and UC medication---had been on my mind all along. I don't think my husband was treated seriously enough for his ulcerated pouch many months back, and I believe he still has the problems he originally saw his doctor about. We'll bring up both those things at his meeting with his new doctor. [ more ]
Scott F In my body this would mean I had pouchitis still/again. I'm on antibiotics all the time, and that's working out okay. Not everyone's pouchitis stays away. If he has cuffitis (UC in the remaining rectal cuff) that would need to be treated, usually with enemas or suppositories of UC meds. Did you try to get insurance to cover the prescription strength VSL (VSL #3 DS)? I had pretty good success with that, and all insurance has an appeal process, but you'll need your doctor's help to appeal ... [ more ]
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J-Pouch ForumsGeneral Discussion
The sounds... oh the sounds...
K KeepFighting(Manny)
msh98991 I actually don't mind the sounds-find them kind of funny! I have always (w/ and w/out my colon) had super LOUD stomach growls when I'm hungry so may be I'm just used to odd noises coming from my gut. I actually am more embarrassed by my empty stomach noises than my pouch noises. May be I'm more comfortable about it because it's been almost 4 years since take-down & I LOVE my pouch-don't care what noises it makes as long as it continues to work so well-plus anyone who's opinion matters to... [ more ]
vanessavy My guts are loud. My bcir sounds like it farts but internlly. I use bentyl if I am with clients and immodium. [ more ]
Lesandiego Happened to me today in a conference meeting.. I feel it coming (like a barometric pressure drop); so I just start tapping my pen to try to drown it out. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Severe Pain - Inflammation?
peteraudio7peteraudio7
peteraudio7 I went to the ER yesterday evening and was put back on cipro and flagyl for the time being. I also am getting a stool sample checked for C. Diff just in case. I have an appointment with my surgeon on the 18th and hopefully we can schedule at least a scope. I agree with both of you that I need some diagnosing. Would it be worthwhile if I'm scoped to also get a CAT scan? I appreciate your perspectives! I'm new to this forum and I really like the people here. [ more ]
Jan Dollar Anal fissures occur inside the anal canal, but generally before where the pouch would connect with the anus. The anal canal is where all the sensory nerves are located, hence all the pain you feel. Anal fissures can be easily missed by the examining doctor. The main thing is to be more certain of what you are treating. Just becuse symptoms improve with antibiotics it does not mean it is pouchitis. When symptoms quickly return after a course of antibiotics, you schould be scoped to determine... [ more ]
Scott F Peter- It's obviously better to not need meds. OTOH, pay careful attention to the following choice (which you might or might not face): 1) "med-free way to exist with this pouch" 2) use of medications that enable *thriving* with this pouch I chose #2, and don't think it's a close call. I scuba dive, practice and teach martial arts, and go to the gym a few times per week. I don't fear long flights or drives or subway trips, and I don't have to leave meetings for a bio-break. For me, at least,... [ more ]
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J-Pouch ForumsGeneral Discussion
something for sleep
K kk
Mhg26 I also have trouble sleeping with the JPouch. It's tough because each day truly is different from the previous one. I'm finishing up my 7th semester of undergrad after missing a year from UC and surgeries, but to help sleep I'll usually take melatonin(1-3mg) every other night or so. Sometimes I'll take a 5mg Valium if I really can't sleep, and it helps although I don't like waking up feeling groggy. Most normal people just don't understand how frustrating and exhausting it is to be woken up... [ more ]
jeane I'm on the ativan train also now and have been taking .05 mg after I wake for the 3 pm bathroom trip. I am using his now instead of xanax and the period of time I get sleep with this med seems to be deeper. Wish I could just sleep through the night once! [ more ]
AllyKat I take Ativan .05 mg and get a great night sleep and don't wake up groggy [ more ]
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J-Pouch ForumsHelp! Need advice now!
Flagyl advice required for pouchitis
V van
Jan Dollar 800mg is a reasonable daily dose. I usually take it for 10 days and extend it only if needed. The longer you are on it, the more likely you are to have side effects. If you start having tingling in your extremities, then definitely reduce the dose, or stop it altogether. Jan [ more ]
van Today is day 5 of flagyl. It's the 2nd day of the 800mg dose. Do u think I should keep with that and maybe reduce after day 7. I don't know what the normal regime is. So far other than feeling fatigue and the metallic taste haven't had other symptoms. I usually get a lot of nausea on a higher dose to the point that I feel like vomiting [ more ]
Jan Dollar You could try 200 three or four times a day. The smaller dose should cause less side effects. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Collection near the Sacrum after J Pouch
I ITO
lixxie I had a presacral abscess/collection after my step one. I didn't seem to have a fever, though I had night sweats. Maybe the constant paracetamol I was on kept the fever down!? Don't know. I felt shocking though. Extremely lethargic, couldn't sit up for lack of energy. I thought it was just a normal part of recovery (it was my first colectomy, lol). It was eventually diagnosed and a drain put in a few weeks after step one. There was some talk it was caused by a blood clot or a leak at the... [ more ]
Jan Dollar Presacral collection and abscess are pretty much the same thing. With the abscess, there is more of an indication that there is infection present. This has nothing to do with your stoma antics. More likely, it is due to your internal bleeding. After it clots, it liqufies and settles where gravity takes it. The presacral space is a common site. This is the virtual space between your low back (sacrum) and your rectum (or j-pouch in your case). Blood collections that become seromas or abscesses... [ more ]
vanessavy Collection usually means fluid. I would think you have an abscess. I have 2 right now and had one cleaned out. [ more ]
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J-Pouch ForumsHelp! Need advice now!
rectal spasms
C Chrissey86
TE Marie You can have IPS, irritable pouch syndrome which is like IBS. You can do an Internet search on it or look under Pouchitis discussion topic. I started a discussion there about IPS vs Pouchitis a while back and have links to 3 places that discuss it throughout the comments. It could be pouchitis again like you said. It sounds painful at 5 per hour [ more ]
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J-Pouch ForumsGeneral Discussion
Dont Get It
C CaryO
TE Marie Depending on how long it lasts it could be you just need to use something like Calmoseptine Ointment, Desitin, or something else for a red irritated rear end. You could have eaten something that irritates you. How long have you had your j-pouch? If it doesn't seem right then you should see your GI. I had problems and assumed they were part of the healing process and waited until my first annual check up to have things looked into. I should have gone in to see the doctor months before I did. [ more ]
jeane Any kind of recurring pain is not normal. You could have an anal fissure which is really a cut from possible straining or some inflammation in your cuff, assuming you still have one. It is worth getting checked out as they can prescribe rectal creams and or meds that should help you if you have either of these. [ more ]
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J-Pouch ForumsGeneral Discussion
Need Recipe Suggestion for CCFA Holiday Party
CTBarristerCTBarrister
CTBarrister Hi KangaRoe, I sent you a PM with the info. [ more ]
KangaRoe Hi CTbarrister, I didn't realize there was a CCFA support group in our area. Can you post a link to the website or give me the name of the head of the support group. Thanks, KangaRoe [ more ]
skn69 yup, we use it too for the holidays...there are as many different reciepes as there are families...if you are anywhere near a Lebanese grocery store, take a look to see if they sell apricot paste...it comes in thin sheets that are wraped in celophane and folded into a package...the other favorite reciepes are with almond paste, whole dates (pitted or not), pitted prunes, ground almonds, slivered almonds and apricot paste. 1. Fancy fruits: 12 pitted dates 12 pitted prunes 12 dried apricots 1... [ more ]
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J-Pouch ForumsHelp! Need advice now!
blockage, stool backup, oral fleet enema?
blueybluey
Goody2shoes I had oral fleet once - its a bit like picolax - but you had to drink a lot more and I couldn't cope with the volume (I threw it up!!) I personally think it would be dangerous in a possible blockage situation [ more ]
Scott F It's hard to tell from your description, but if he sent you home I'm guessing you're not in dire straits. Are you passing any stool? Able to hold fluids down? I don't know about the oral Fleet - whether it's a good idea or not. Fleet does make oral laxatives, but I don't know what product you were given. Did you get any effect from the antibiotics? They can thicken the stool, even to the point of constipation in some cases. Certainly talking to someone who can spell "J-pouch" would be more... [ more ]
Jan Dollar First of all, could you explain what an oral Fleet enema is? I never heard of such a thing and the very definition of an enema is a rectal intillation. If you are not completely blocked, mild laxatives like Miralax are OK, but not harsh prugatives. Otherwise, you can focus on pushing warm, clear fluids, like tea and broth. The other question I have is when was the last time you had a rectal exam and or pouch scope with your GI doc or surgeon. I would suspect an anal stricture or a pouch... [ more ]
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J-Pouch ForumsGeneral Discussion
protein supplementation
S scallop
TE Marie I don't eat tons of meat. The only meat I eat is baked chicken and turkey plus some sliced sandwich meats. I like beef & pork but my system doesn't. I'd given up beef before I had my colon out so it's not a big loss. I still have ground beef in some sauces but use ground turkey as well. I love cheese so eat a lot of sandwiches. Cheese has protein and is fattening too. The chocolate flavoring, in PlantFusion, is not too strong. If you really want an ice cream shake taste you need to add... [ more ]
Scott F If you eat tons of meat then you might get more calories (and weight) by adding fats rather than additional protein. You might be able to choose less lean options (dark meat chicken with the skin on, higher fat ground beef, etc. You might already be doing this, of course. Fats are the densest source of calories. [ more ]
iHateColitis My free sample still hasn't come in. The chocolate mix doesn't upset your stomach from the chocolate? [ more ]
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J-Pouch ForumsPouchitis
5 days in the hospital
S Seriously?!
Lesandiego I have only had pouchitis once. One of my symptoms was a low grade fever of 99-100F. Felt better immediately after taking first day of Flagyl. [ more ]
Jan Dollar I thought perhaps no flu shot because it seemed they were quick to jump to that conclusion. Yes, not foolproof, that is why everyone she is in contact with should be vaccinated. Plus, if you have the vaccine, typically the flu is mild if you get it. There are new strains every year, but it starts in Asia and they adjust the vaccine accordingly. That is why you need a vaccine every year. Jan [ more ]
Seriously?! She had a flu shot in September. Why did you think she didn't have one? There is a new strain this year and the Dr thought perhaps she had it. The Flu shot doesn't mean you won't get flu...our Dr said they have seen a lot of high fevers this year so far. She never gets fevers..only when she has pouchitis! [ more ]
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J-Pouch ForumsGeneral Discussion
Argh, more abscess issues - resect the pouch questions
aka KNKLHEADaka KNKLHEAD
Jan Dollar Two sides to every argument, for sure. And only you know what your limits are for what you are willing to put up with. Unfortunately, perianal/rectal abscesses can tend to be recurrent. If you had a crystal ball, you'd know how many recurrences you'd have before this was done. But, it is just one of those unpredictable things. Dr. Shen will be able to give you more guidance about what the risk ratios are in your case. These things can be painful and distracting, so I can understand wanting... [ more ]
aka KNKLHEAD Appreciate the input, Bill! I need to do some research on pouch alternatives! [ more ]
BillV My personal preference would be to make a good effort to save your J pouch, especially if you were pleased with its function prior to your current situation. Dr. Shen and others at Cleveland Clinic are a good choice for necessary medical support. If it is determined that your pouch cannot be saved, you have the options of an end ileostomy and a K pouch or BCIR. When faced with this choice, I selected to go for a BCIR since I adamantly did not want the bag. I wish you the best of luck. [ more ]
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J-Pouch ForumsPouchitis
Help!
F FrustratedButFighting
Jan Dollar But wait! Yes, your period can cause major havoc with your pouch, just like it could with your colon. Since your symptoms are mild, I would wait until a few days after your period and reassess. Take extra Imodium during this time. It could be that you had some minor pouchitis and your period sort of sent you over the edge. But, don't read too much into that CT result, because ALL pouches always have level of minor inflammation. It comes from the ileum being used as a reservoir and exposed to... [ more ]
Scott F What you describe sounds like pouchitis to me, more likely than a virus caught from your family. You could try waiting to see if it clears up on its own (probably a virus), or discuss the pouchitis possibility with your doctor. The antibiotics for pouchitis tend to work remarkably quickly (generally within a day or two), though they don't all work for all of us. [ more ]
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J-Pouch ForumsGeneral Discussion
Two questions. flex scope / possible hernia
J Jenmystique
Jan Dollar No sedation for me either. Just minor cramps from the air they pump in. I also do the Fleets and refill the bottle with tap water, and rinse until clear. Having your primary check your stoma site for a possible hernia s fine. I agree, going to the ER is overkill unless you are in unbearable pain. Jan [ more ]
CeeeeCeeee I buy the child's enema and appreciate the smaller nozzle. I don't use any sedation for the scope. I enjoy watching the procedure on the T.V. screen above me. The only discomfort seems to come from the filling of my pouch with air in order to get a better luck. It's not painful.....just a bit uncomfortable. It lasts only a few minutes.....followed by the passing of all that air! Best wishes! [ more ]
Scott F Folks vary in how much sedation they prefer. I find the pouchoscopy procedure painless and quick, and skip the sedation. If you have a fissure or a stricture it can be a very different story. A Fleet enema is fine, or some people replace the fluid with tap water to reduce the irritation. [ more ]
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J-Pouch ForumsGeneral Discussion
Hemmeroid remedies????
skn69skn69
CeeeeCeeee Metamucil or oatmeal works wonders for me. Almost instant relief. My gastro doc calls Metamucil a stool regulator. If you have diarrhea, it thickens things. If you're constipated, it loosens things. Wonderful stuff, for me anyway! [ more ]
TE Marie Has he tried Preparation H suppositories? They shrink plus they soothe. If he can't get the suppository inserted there is Prep H tooth paste like tubes so it can be applied on the outside. Also plain old Witch Hazel with a cotton ball applied on the outside is an astringent that doesn't burn but is actually soothing. Also he should be taking Metamucil &/or stool softeners. This is a must to get his stool softened up so that it doesn't continually upset the inflamed hemorrhoids. Sitz... [ more ]
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J-Pouch ForumsGeneral Discussion
Adhesions
K KiwiPoucher
Anushka Just want to say I'm so sorry you are having to go through this. Living with that kind of pain I know must be so hard. I do hope you find the answers you seem and that over time you experience relief. [ more ]
KiwiPoucher Yes you are right, adhesions do not show up on imaging. I had the adhesions removed laprascopically and the surgeon took a photo of it in-situ just prior to him removing it. Whist they are awful things, it was amazing to see it. It was just so structurally perfect, pink, smooth and absolutely cylindrical with not a blemish or bump on it. Because I have seen just how large and solid they are (3.5 inches long and over half an inch in diameter, I personally cannot believe massage will make any... [ more ]
beckysmom My goodness, I am so sorry to hear about this happening to you! I have heard about "massage therapy" for adhesions but I don't know if you could even try that this early on. May I ask you what kind of imaging did the dr do to see your adhesions prior to surgery? We have always been told they don't show up on a scan. I hope someone with experience in this will answer your post. Take care. [ more ]
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J-Pouch ForumsGeneral Discussion
Simponi users
Kline84Kline84
jeane I have just addressed this issue with my GI for my chronic cuffitis. I am currently being tested to rule our a possible fistula and if none found, I am going to request a trial of this or 6 mp. I am curious Kline if you tried 6 mp already? I would be very interested in an update as to how you find Simponi is working for you. Best of luck for some relief. [ more ]
Jan Dollar No, if it works, then you stay on it for maintenance. I have been on some sort of anti-TNF biologic for about 13 years. That said, my rheumatologist did tell me that once in stable remission, I could try lengthening the time between injections. But so far, I have not been successful with that. Jan [ more ]
Kline84 Thank you for the reply Jan! That is great to hear it works for you. I am excited to see if this is finally the answer to my problems and I can go back to feeling somewhat normal. Once things get better do the doctors normally stop the biologics and hope it stays in remission or is it a long term thing? [ more ]
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J-Pouch ForumsK-Pouch Korner
Severe abd pain every day
jeanniejeannie
jeannie Thanks Sharon I think the urinary leg bag is the same one. Seems like when I worked med/surg as a nurse I remembered the one I came home from Scripps hospital with was the same urinary bag used in every hospital. I will look in Edgepark medical supply's. I just read an article on ballon dilation for stricture (usually in Crohns disease)Only 1 of 20 dilations did not need repeating. Some within a year. I guess 4.5 years was lucky. What will I do when I am an old lady and can not walk thru... [ more ]
jeannie Thank you Vanessa I just got a package of tubes from Edgepark I will look on the site. I have to drain my stools so it does not pile up at the stricture and hurt like hell when it trys to get thru. I am now putting my legs up on the bathtub with my belly in the air to relieve the pain so it is bearable. Takes about 20 minutes each time. Yesterday I had 2 occurrences. Inserting tube and plugging it will not help. Oh the stuff we put up Talk soon Jeanne [ more ]
skn69 Jeannie, I use urinary leg bags...not sure that there is a difference betweent them and the ones that they give me in the hospital...same difference...I connect and tape the connection (since it poped open and splattered my girlfriends brand new convertible!)...In a pinch you can use the tip cover that comes on the end of your 60cc syringes as a plug...works perfectly and is the right size...just tape it in!...hope that this is over soon and that you can go back to your usual, normal life. ... [ more ]
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J-Pouch ForumsHelp! Need advice now!
BAD butt burn and leakage
L ljk
TE Marie ljk, Sorry I wasn't too clear. I took 3 capsules 3 different times a day with meals or light meals and like Scott says you need to find out what works for you. Metamucil is nothing like Imodium as it is fiber that acts to make your stool less watery and it does not slow your system down like Imodium or Lomitol does. It doesn't cause hard stools just mushy, I hope this makes sense. If you eat an entire wafer I believe that is one serving or the equivalent of 5 capsules. So as Scott says you... [ more ]
Scott F The idea is for the psyllium (Metamucil) to mix with food, so just before or after a meal should do the trick (I take it before). One capsule is a very small dose, so it might well be insufficient. You could try more, up to a full dose (5 capsules) and see what works best for you. The effect is physical, not pharmaceutical, so you'll know how a dose worked pretty soon after taking it - certainly the same day. I get better results with the powder than the capsules, since the capsules didn't... [ more ]
ljk Anyone else tried doing the pelvic floor therapy? I just started but I am already seeing results from it!! [ more ]
See all 19 replies...
J-Pouch ForumsGeneral Discussion
Rough day?
A aliiien
vanessavy GAS was my nightmare in the beginning of my surgery due to c.diff and sibo, and new plumbing. Bentyl, that magic blue pill got me through the first 6 months a lot easier. calms the bowels a bit. [ more ]
TE Marie Super Digestive Enzymes by brands Solray or LifeExtensions, can be purchased in a Health Food Store or on line are better and cheaper than Gas X and cover more foods. They cover more foods and help cut down on gas but don't get rid of it all. They really helped me in the early months and my pouch and GI system was getting use to the new plumbing! Also try doing a version of the yoga downward dog to un-lodge gas as gas rises. Get on your knees and hands then lower your head, arms and hands... [ more ]
aliiien Appreciate the reassurances, guys. I've felt a little better this evening which is good; after a crazy year of being dx/hospitalized/surgeries, it's hard to remember not to worry! [ more ]
See all 8 replies...
J-Pouch ForumsK-Pouch Korner
Salads
vanessavyvanessavy
vanessavy You would think! I am really overweight. I have put on 20 pounds since I had surgery. My doctor said I am SUPER absorbent lol yay. not. Oatmeal doesn't thicken me up too much. Fiber like that does the opposite to me. Makes me go! If I eat popcorn, forget it, I poop forever. [ more ]
skn69 Yum...hope that it went through you ok...have you tried eating oatmeal? It really slows me down...I know that it isn't on the paleo diet but being that your guts have a mind of their own and that things seem to be taking a high speed train through your body...you may need to consider 'thickening foods' to help your body hang onto stuff a bit longer or you are going to become severely malnourished. Sharon [ more ]
vanessavy I ate a whole baked apple in a sugar free dumpling. That was a first. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Stomach virus
T Teddybearlady
Chris M my lips drying and cracking are my tell tale sign that I am getting dehydrated. I also used Cambell's condensed chicken noodle soup for the sodium when I'm feeling bad. [ more ]
skn69 I have had the flu on numerous occasions and am a chronic stomach flu catcher...I haven't been hospitalised for it since my pre pouch days...I push fluids, especially chicken soup, tomato soup if I can keep it down, homemade lemonaide, tea with honey and lemon and just about any other fluids that I can take...canned broth is full of sodium, tomato soup has potassium (good for those leg cramps) and I keep taking my liquid vitamins at all costs... I wouldn't go to just any hospital unless I... [ more ]
suebear I've had the stomach flu once or twice since surgery 13 years ago. I was able to manage it at home with lomotil, pepto bismol, and vitalyte. I don't think one has to go to the doctor, but do be aware of your condition and seek help if needed. Sue [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
A long story of colitis or chrons??
M MrsBrightside
clouseau I was told 20plus years ago I probably had UC but there was a small chance I had crohns after by biopsy and they put in a J pouch. I am told now by Dr Shen at CC that it looks like I have crohns since i have a couple strictures and at least 1 RV fistula. I may need to go back to a bag as i have chronic pouchitis and am on anti biotics long term. So it sounds like we are in similar situations. [ more ]
Scott F The categories "UC" and "Crohn's" do a reasonable job of describing two different sets of things, but they aren't perfect categories. While a change to a Crohn's diagnosis might sometimes reflect a diagnostic error early on, it may be more common that the disease is acting like what's called "Indeterminate Inflammatory Bowel Disease." If someone tells you it's "impossible" to have both at once it just means that they have defined the categories that way. The category (diagnosis) is only... [ more ]
MrsBrightside The way I understand it is that it is impossible to have ulcerative colitis and chron's, at the same time or not. This would mean for all of us who were diagnosed with uc and then chron's many years later, that the original diagnosis was wrong. It may be that we had chron's all along or that it was chron's colitis. The consultants I have seen here tell me it is possible I was misdiagnosed in 1989 but I believe (and hope) I am being misdiagnosed now. I have sent for my health records from... [ more ]
See all 8 replies...
J-Pouch ForumsHelp! Need advice now!
What's "bad enough"?
R Rhema
clouseau Rhema, I've had my pouch about 20 years, going to the bathroom every 1.5 hrs on the average but got used it it. I was diagnosed with lymphoma 2 yrs ago and the systems then got much worse, in the bathroom about 30 times a day, severe pouchitis. I am on cipro an tintazole now and am back to every 2 hrs which for me is good, I've adapted. I go to Dr Shen at CC every several months for ballon dilitations for my strictures. My rectal vaginal fistula is now leaking to vagina a bit for the first... [ more ]
skn69 Rhema, My definition of when it is enough? I will know it when it happens. I have a very high pain tollerance and have a reasonably good constitution but there are times when the pain and surgeries start to add up...no one can tell me when it is time, I have to be both physically and mentally prepared to accept the next step, whatever that step may be. I wish you peace of mind and an easy decision. Sharon [ more ]
TE Marie I wonder about the same thing, my take down was 3 years ago on 12/29. I figure my adhesion pain will potentially get worse if I have more surgery as I will still be using most of my small intestines, as I am now, because I'll have another operation to cause more adhesions. I have IPS, have you considered or has your GI considered if you have IPS vs or along with pouchitis? I started a thread a while ago about this and have 3 links in several posts in there regarding IPS. I had IBS along with... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Diarrhea surgery part 1
P PHedges
PHedges Thank You Anushka, I have changed my diet since I received the responses back also I increased the Imodium and added Lomotil. I'm doing a little better, less diarrhea. Your post helps me on "variety" of options to add. Thanks for the suggestions I really appreciate them. [ more ]
Anushka For thickening, you could try Cream of Rice porridge for breakfast. I make it with Coconut milk and cinnamon and add in mashed bananas, which also help thicken output and sweeten the rice porridge. And both the Coconut Milk and banana add calories and nutrients. Could also stir in smooth peanut butter. White sushi rice with meals is a big help. For extra nutrients, protein and calories, put a couple fried eggs over a bowl of white rice and flavor with a bit of soy sauce and sesame oil. [ more ]
PHedges Thank You all, Pluot-Liz,TE Marie, Scott, Donna, I apprecite all the suggestions, I'm going to move from Imodium to Lomotil, it may work better, I just called the surgeon and easily gave me a prescription. I will also include the foods you - Liz recommended. Donna I'm not much of the apple sauce person but will eat baked chicken and fish. Thanks again! So glad all of you are here with your advise and input! [ more ]
See all 9 replies...
J-Pouch ForumsGeneral Discussion
Anal/Rectal pain??
M mads101
TE Marie Does the pain go away after a while after your BM or are you always in moderate pain? I can't sit for very long without using my blow up rubber ring. I allows for my tailbone to have no pressure. The tailbone area is around the j-pouch is internally as it sits down in the pelvis. It sounds like you are in pain in whatever position you are in Have you had any changes in the number of or consistency of your BM's? If you are going more and they are more watery it could be a sign of Pouchitis,... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
UC to Chron's after J-Pouch Surgery - is that possible?
P Pkitty
Scott F The instruction to stop Xifaxan if you don't get a response in 24 hours is almost certainly for its use in traveler's diarrhea. I don't believe it applies to you. I'd give it a few days to a week, and talk to your doctor before stopping it (assuming your only problem is that is doesn't seem to be working). [ more ]
ljk I too Have the diadnosis of chrohns/colitis they are not sure. I had my stoma for 8yrs after deciding tigo through with the jpouch. I was trying to concieve using help with an infertility specialist. After I used My last embryo and It failed too, my heart was crushed. Truly I think if the pegnancy did occur I would have never thought about the jpouch surgery.It sure has kicked me in the butt, this surgery! The healing has been really tough. I recently had a pouchoscopy and she said... [ more ]
Former Member Karbear, So sorry to hear that! That is one of my worst fears right now. I too have had a couple things with my UC that are untraditional. An RV fistula and stricturing in the sigmoid colon. But the gastro and surgeon are pretty confident that it is UC. It did start as Ulcerative proctitis and then seemed to spread up the left side of the colon, and I only had a pancolitis flare once. Now when I did have the RV fistula, it was a very bad flare, and I was doing a gym program and the trainer... [ more ]
See all 19 replies...
J-Pouch ForumsHelp! Need advice now!
gallbladder problem
ksrksr
skn69 I am not sure that a woman over 40 in my family still has her galbladder...we all got them removed sooner or later...that is just our heredity... Mine bugged me from the age of 14 on...used to make my mom massage the spot just under my right scapula to the right of my spine with a decorative glass egg...the only thing that seemed to be the right shape and size to get to the pain. I had episodes where I was so sick, nauseaous, and in so much pain that I thought that I was having a heart... [ more ]
See 1 reply...

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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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