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J-Pouch ForumsGeneral Discussion
Prostate biopsy
MN Mark N
JeffDC When I had a physical several years ago, the doc was causing so much pain when he tried to check my prostate that he stopped the procedure and told me to go to my GI. [ more ]
ElmerFudd Mark, this question has come up in the past and there shouldn't be any problem doing a biopsy that way. But I would check with your surgeon if you have concerns. Steve [ more ]
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J-Pouch ForumsGeneral Discussion
hospital stay for obstructions
clz81clz81
beckysmom How are you feeling? [ more ]
Mhg26 I agree with the last few comments. Just be careful what you do eat. Soup is always a good choice to start for small dinners, and I find things like oatmeal or cereal with milk to be innocuous enough for breakfast or brunch. Bananas are good for your potassium levels and quick energy. A lot of times I'll drink ensure nutrition shakes since it's very light and has all the necessary vitamins, minerals, sugars, fats, etc. Once you're feeling confident enough to take on some veggies, I would try... [ more ]
13 Years & Counting I agree in terms of taking it slow with food early on...I didn't mean to imply otherwise. I just think that you can't be afraid to introduce "real" food slowly. [ more ]
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J-Pouch ForumsGeneral Discussion
Day 6, we are home
C CathyA
CathyA Actually her surgery was one step mike, so she already has the pouch. Glad to hear your life is so good with it, thats awesome! Thanks Sharon for your advice, I'll certainly make sure to heed it. Thank you everyone for your well wishes, I will post often, hoping to help others! Cathy. God is Good [ more ]
skn69 Such wonderful news! Don't forget to take things slowly...I know that she wants to do everything, eat everything, go everywhere...but a bit of caution is needed...don't let her tilt the balance from not doing much to doing too much...she needs to heal just like us old folks do (fine, she will probably heal faster and heal quickly but temperance and patience is til the key)...wonderful to have her back in the house, isn't it? Sharon [ more ]
Mike H Good to hear. Slow and easy, you will not believe how fast she will start feeling better. I was back to work in 8 weeks after my J Pouch was created. I am now 3 months after my reversal and life is great. I dont even think about it anymore and I am on no meds at all. The J poch is awesome and works well. As young as she is she will heal quick. Just remember that until that reversal surgery she will have jst as many bad days as good days and alot of it will be the mental part of dealing with... [ more ]
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J-Pouch ForumsGeneral Discussion
12 years of misery with a pouch
B BustedBadgerButt
Mike H The Cleveland Clinic has Dr. Shen who is considered a genious world wide when it comes to finding out what is wrong with bad pouches. I had my J pouch surgeries there this year and mine so far is awesome knock on wood. Not one day of accidents, night time leakage or butt burn, I highly recomend the Cleveland Clinic. [ more ]
Lesandiego I live in San Diego and used Dr. Mathew Isho. Maybe he can give you a phone consultation. I don't know if he is "great" since I have nothing to compare him to. For the most part my pouch is tolerable and any issues I may have are mostly self-induced because I refuse to restrict my diet. I am able to do all activities and foods in moderation..... so YES I have the quality of life that makes me happy. [ more ]
jeannie Who did your Jpouch. I had mine done at El Camino Hospital in 91 but it failed 15 years later and I had to gp to Scriplps La Jolla for a Kock pouch by Dr Launer. He passed away and now Dr Worsey is taking his patients. I never had any luck with Stanford MD's Completely uncaring *******s. Sorry but you do not have to go so far as the Cleveland Clinic when you can get help in San Diego, CA. Jeanne Scott, Rn Jpouch to a kock pouch [ more ]
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J-Pouch ForumsGeneral Discussion
Please Check your Private Message Notification Status
Jan DollarJan Dollar
Rebe0505 hi sorry donot understand your instructions as it does not work for me..does this mean old system not working as before?use to just click send personal message to person and it did [ more ]
ljk Hi Jan how are you? OK this is the 3rd time trying to write to you!! dont know why but as soon as I amalmost finished it just disapears on me, urrr very frustrating. I wanted to inform you that I am doing quite well now, although I had about 2weeks ago an abstruction, omg so much pain I called the clinic and said they would rather see me but I told them that I was in way to much pain to drive to Cleveland. In akron they did a catscan and inserted a NG tube which I think is the most barbaric... [ more ]
kblgal Thanks! I didn't even know we could receive private messages. >_< [ more ]
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J-Pouch ForumsGeneral Discussion
Day 4
C CathyA
mgmt10 Sounds like she's doing well. This will all be behind her soon. [ more ]
CathyA Thanks so much, I'm very proud of her. She's had uc since she was 8, so it's been a long 10 years. We are Thanking God for every step forward she makes. Hope your doing well. Cathy. God is good [ more ]
skn69 Wonderful news! Now it should all be smooth sailing...She just needs time, activity and nutrition to build up her strength...she is quite the trooper. Good luck and hopes for a fast and uneventful recovery. Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
Any Options Left Crohn's???
Chris MChris M
Chris M yes, it is wonderful news for sure… and maybe she will be time will tell….. [ more ]
TE Marie That is fantastic news! So maybe she's going to be your new GI [ more ]
Chris M yes I was lucky that she tested for sure. So far I am feeling better. I am starting to get my energy back, and haven't had a fever, chills, or shivers since the middle of last week. Looks like things are starting to come around... [ more ]
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J-Pouch ForumsGeneral Discussion
Imodium/Citrucel: How much & when
J JsWife
JsWife For all we have been through this year... this site and all of you are what we are so thankful for. Thanks again and we wish you a Merry Christmas and Happy (uneventful) New Year! [ more ]
TE Marie It is best to change one thing at a time to see how your body/pouch reacts but I was put on both right away, my surgeon wrote out a schedule so that's all I know. [ more ]
Minn Mark Everyone is different. When I had my takedown, no one (not surgerons nor GI docs) instructed me to take fiber (Citrucel, Metamucil) etc. I took Immodium (still do). I also control the fluid intake- avoid adding sugar/sweet/salts to your fluids as this will only make you go more. Just my experience, but I would cut out the fiber for several days, and use only pure water- no sodas, Gatorade, coffee, etc and see how you do. Patience is the virtue- its takes a lONG time for things to settle... [ more ]
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J-Pouch ForumsGeneral Discussion
Anti-depressants? Do they help IBD
M MrsBrightside
TE Marie I hope you get some help MrsBrightside. Your name makes me [ more ]
MrsBrightside Yes the medication may be called something else but they would be available. I think my GP would also be more likely to prescribe but I think my consultant could have a say in this if he agreed with me. Am still waiting to see the gastro consultant, its not the quickest process in the uk. I am going to my GP next week however, and will ask to see a different to see their response to the anti-depressant question. And you're right, they would be very depressed if they suffered what we did, I... [ more ]
TE Marie I forget you aren't in the U.S. I don't know how the doctors prescribe in Glasgow - I don't even think the names of the medications are the same there. I guess you ask your doctor who you should see if she isn't the right one to prescribe you medication for your depression and stress. I wonder how depressed these doctor's would be if it were them with the IBDs, j-pouches, chronic pain etc. They would be stressed and depressed to. I couldn't be a doctor. Talk about stress. Whatever job I ever... [ 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 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 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 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 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 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 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 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 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 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 ]
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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 ]
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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 ]
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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 ]
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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 ]
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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 ]
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J-Pouch ForumsGeneral Discussion
Oral B12 dose
P Pluot
Pluot Whoops, I think I did some free association on the anemia question. Scott is right, ignore me My GI doesn't think my levels are low enough to bother self injecting... Maybe next time if my levels haven't improved enough I will push to self inject though, I used to do my own mtx shots so it would be easy for me to do. Guess it's just wait and see for now. I am happy to report that since adding 50,000 IU Vitamin D twice a month my levels are finally >50 for the first time ever. We'll see... [ more ]
vanessavy IRON is absorbed in the duodenum. My Ferritin levels are usually at a 4, very anemic so I get infusions. I have used the b12 patch before, b12patch.com Also injecting B12 isn't the best. You just piss it out. [ more ]
liz11 why don't you self inject? My GI has me self injecting B12 weekly since my jpouch was removed. [ more ]
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J-Pouch ForumsGeneral Discussion
Leakage
M Mark01
KeepFighting(Manny) The reason I chose citrucil was because it causes less gas then other fiber supplements. It thickens the output and I can normally sleep between 6-8 hours with my regime but of course if the pouch calls, we gotta listen and cooperate right? Have you thought about trying metamucil wafers? I tried these and they work as well.. A lil pricey (thats mainly why I stick to citrucil). [ more ]
KeepFighting(Manny) The alarm always works, last meal of the day try to eat something thick last like peanut butter, don't eat at least 4 hours before bed, Immodium before bed and try not to take too much fluids at least an hour before bed and as a last result you can always result to female pads or adult diapers to eliminate the mess anyway... I thought I had a problem too with muscle sphincter damage and begged and pleaded with the Dr to check... So they did and I was 100% fine... It is a great sign that you... [ more ]
Mark01 I've mentioned to my doctor about the muscles but he seems to be think it's something else. I just woke up after a 7 hour sleep without leakage for the first time in months! I had 4 Imodium before bed (even though I've tried that before) [ more ]
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J-Pouch ForumsGeneral Discussion
apple cider vinegar???
PouchomarxPouchomarx
dgloria5 Suebear,good to see your still coming on. Where's Kathy and connie and the old timers? I hardly come on myself as I don't have any pouch issues so am not much help to the ones that do. [ more ]
vanessavy Turmeric extract is for inflammation. Also Good for many other things. I use it for polyps. I use apple cv for heart burn. Knocks it out. [ more ]
skn69 Some people say that it is good for the mineralisation of the skeleton...don't know if it is true but I am sure that we can google it! (I use lemon juice for the same thing...its the acidity that does the trick) Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
pain from adhesions, treatment options?
BH Bama Hiker
KiwiPoucher Hi There, Your symptoms do sound similar to mine. I have just posted about my adhesions from which you will see there are risks involved with having them removed. I only undertook removal because my bowel ended up being blocked every time I ate any solid food and my intestine was permanently distended and painful. My advice would be only have surgery as a last resort. Good luck. [ more ]
Jan Dollar Even if it is due to adhesions, if your symptoms are relieved by taking Librax, mo betta! In addition to relaxing the gut so it is not trying to force something big through something small, anxiety can definitely increase the whole scenario. So, staying calm is a therapeutic thing too, not just for keeping you from bugging your doctor too much (just kidding)! Jan [ more ]
Bama Hiker Thanks for your concern and feedback. I saw my GI Thursday, and he thinks that I am having spasms and cramping in my stomach and small intestines. I had noticed my belly feeling tight all the time. He didn't rule out scar tissue, but wants me to try Librax for a month. This works by relaxing the muscles in the stomach and intestines and helps to reduce anxiety. I wondered if this was a little in my head. I guess it is easy to do that when you think the next pain you have is going to lead to... [ more ]
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J-Pouch ForumsGeneral Discussion
Bypass Flow Into Pouch/Re-Route
13 Years &amp; Counting13 Years & Counting
13 Years & Counting Thanks for your replies. Scott: I don't know the exact number of times the surgeon has done this but I know it's a good amount based on the discussion today. beckysmom: Thanks for letting me know your daughter had this done. I saw your post to my other post in the advice section & commented before seeing this. Your help is very much appreciated! [ more ]
beckysmom My daughter had this done. She had a stricture at the inlet to her pouch that had been dilated many many times and also a very large ulcer that bled ALOT and she required transfusions. So after trying to keep from having a major surgery she finally had no choice and her surgeon moved her inlet from one side of the pouch to the other. [ more ]
Scott F I've not had this done, but I'd strongly recommend asking the surgeon exactly how many times he's done that procedure. I'd be surprised if you liked the answer. [ more ]
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J-Pouch ForumsGeneral Discussion
What to tell her?
Mental KaseMental Kase
TE Marie All's well that ends well (I couldn't resist.) I didn't know all the facts and now am so happy you've found such a caring lady! [ more ]
Mental Kase Some nice conversation took place and she seemed pleased to be entertained by the odd anatomy of it all. Like Sharon said, a bit of prep helped. Lots of water and some irrigation. Full cooperation of the Pouch (which is rare for me) made for a good experience, not too much mess and it was pretty dilute so I was happy for that. We did discuss how I felt when I realized that I'd lost an entire erogenous zone. At time of surgery, way back when, I hadn't thought much about it since I had no clue... [ more ]
TE Marie Congratulations I'd just say no as suggested above as you have enough problems with your pouch and she could actually do some real damage. You don't need to tell her that, it's none of her business plus you don't want her to feel like you don't trust her etc. Who knows, she might actually be relieved and was just open to the idea [ more ]
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J-Pouch ForumsGeneral Discussion
where will my ostomy supplies come from?
TheRealBrettTravisTheRealBrettTravis
TheRealBrettTravis Thanks for the all the good info, everyone. I really appreciate it. [ more ]
CTBikeBoy You can also order free samples from the manufacturers (i.e. Convatec, Hollister, Coloplast). Go to their websites to find more information. I was able get through the 1st 1.5 months on nothing but free samples. Good Luck!!! Brian [ more ]
TE Marie Make sure you try different kinds and even brands if necessary if the first one doesn't seem to fit you right. It is going to feel weird and it won't hurt to try a different kind. There are some with belts that seem weird at first and I ended up liking that kind the best. The reason I suggest this is whatever kind you pick out you will probably be stuck with after you leave the hospital. [ more ]
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