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J-Pouch ForumsHelp! Need advice now!
Blood after surgery
BebeksporBebekspor
Jan Dollar My cuff inflammation resolved in the first few months, but returned again later as a chronic condition. Jan [ more ]
Bebekspor Would rectal cuff inflammation go away on its own? The surgeon said unless there's a lot of blood or clots, not to worry. I didn't have any today. Katie [ more ]
Jan Dollar It could be your rectal cuff is still inflamed. But, since there was enough bleeding for there to be a clot, definitely touch base with your surgeon. Sometimes there is a little "bleeder" in there that can get worse if not attended to. It can happen from all the BMs and straining with the diarrhea. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
C diff
P Pluot
Jan Dollar Sounds appropriate to me. You should be back in shape soon. Jan [ more ]
nbm I was treated with flagyl for c diff (had j pouch as well at time) and it cleared it up and I never got it again. I think vanco is even stronger than flagyl so hopefully it will knock it right out. Not sure how I got it either--I had giardia at the same time (I know I got that while travelling in China)--flagyl worked on both of them. Good luck and I hope it is just a one time thing. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
pregnancy with k pouch
Rosie128Rosie128
Rosie128 Thank you Jodi! I am happy for you too! I bet you can't wait to meet your little one! I love being pregnant too, although once the morning sickness passes. While I have it, I am queasy 24/7. But once that part is over I love the feeling of carrying life! Good Luck and hope all goes smoothly with the rest of your pregnancy! [ more ]
jodiloveslife I have a j-pouch so I don't have any answers for you but did want to say CONGRATS!!! I hope that everything goes awesome for you. We are expecting a girl in June. This is my first. I have felt fabulous this whole pregnancy too--feel better being pregnant! Hope you feel the same way!! Best of luck!!! [ more ]
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J-Pouch ForumsPouchitis
Pouchitis: Any reassurances?
ninifunknessninifunkness
Jan Dollar Gee, Cipro is sort of notorious for causing C. difficile infections, so I sort of cringe when I hear of folks being put on repeated cycles of it, especially with worsening symptoms and bleeding. Please ask about C. diff testing. Hopefully, this is just cuffitis and you are just on the wrong medication. Good luck with the new GI! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
weird feeling in upper abdomen
B bec1970
bec1970 Thanks, Jan!! That doesn't sound too alarming. I will definitely mention it to the doctor but will try to worry less over it, and see if it is associated with anything in particular. [ more ]
Jan Dollar The area you describe is the epigastric region (the stomach). So, what you are feeling is stomach movement. Sure, it is natural for the stomach to move, but if it is hyperactive, perhaps you are developing gastritis, ulcer, hiatal hernia, etc. But, since you have no pain, it is what they call "subclinical." That means that if they did an upper endoscopy, they might find some gastric irritation, even though you are not experiencing pain or heartburn. Of course, it could be adhesions that are... [ more ]
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J-Pouch ForumsGeneral Discussion
Just had a scope have cuffitis..but doc wants to take more rectum!?
dgtracydgtracy
bec1970 Just want to say sorry you are having these issues. And I would like to join the anti-flagyl brigade. [ more ]
dgtracy I hate flagyl too. I will try the hydrocortisone supps before that other surgery..just scared of not being able to hold it as well if they take more rectum [ more ]
grandmaof1 I have always seem to have throbbing right inside my rectum. And they confirmed inflammation. I guess I will ask for suppositories. I feel at a lost of what to do. Cipro was working until I came off and now that I am back on they just are not working. And I hate Flagyl. [ more ]
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J-Pouch ForumsOstomy & Skin
trouble with leakage
S Solomin
PoucherInTO Hi Solomin Sorry to hear about your leaks. OK you are using the convex system - are you able to push down on the convex part of the wafer and then secure the flange properly? I know sometimes the convexity likes to pop up if it isn't pushed in quite a bit, and then secured really well with the rest of the wafer. Also, are you maybe covering part of the loop stoma with your flange, and then stool leaks underneath? I know when I had a loop I had to be extra careful in how I cut the wafer... [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery to remove a twist in the intestines
Boston170Boston170
CeeeeCeeee My blockage story is similar to clz81's While in the hospital on morphine I also had an NG tube inserted and until the twisted small intestine untwisted, I was on IVs only. Nothing by mouth....which was fine with me. I was grateful for the morphine, believe me! What finally caused my small intestine to untwist? Here is my guess....I've never really asked the question of my surgeon but every time my surgeon visited me.....at least twice or three times a day, he would start by placing his... [ more ]
clz81 I'm not sure at what point exactly surgery is required to "unkink" a bowel. I waited mine out for several days in the hospital with an NG tube, IV fluids, and daily x-rays. Also 2 CAT scans and and MRI. As there was no immediate threat to me, the GI team and surgical team checked on my twice a day and we kept waiting til things cleared up. They don't really know what causes them to unkink, but they say that the NG tube to give the bowels a rest and the hydration from the IV is very helpful. [ more ]
Boston170 Thanks for sharing your story CeeeeCeeee. Was there a reason that helped the intestines unkink? What did they have you on at the hospital? I'm hoping that the same happens to me. I'm on a liquid diet now, water and Ensure. Boston170 [ more ]
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J-Pouch ForumsGeneral Discussion
Searching for a GI in So Cal
M Mattjp
CeeeeCeeee The GI doc I mentioned is in Newport Beach. His name is Donald Abrahm, M.D.; 1525 Superior Ave., Ste 104, Newport Beach (949) 631-2670. He is very popular and you might have to wait awhile to get an appointment. He is very knowledgeable about J-pouches. I just had him do an upper endoscopy and my colorectal surgeon performed a lower endoscopy on me right after Dr. Abrahm finished his procedure. Best wishes! [ more ]
Mattjp I'm in Temecula, so it's about the same distance if they were in San Diego, or LA. Can you send me the info on the doctor? Thanks. [ more ]
CeeeeCeeee Is Orange County (Newport Beach) too far for you? I have a fantastic GI doc! [ more ]
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J-Pouch ForumsGeneral Discussion
Out of Kaiser need new drs. In Fremont, CA
DT Diane T.
Jan Dollar My Fremont Kaiser GI is Jean-Luc Spzakowski. He seems pretty knowledgeable about my j-pouch. He's been with Kaiser a long time. First in SF and now Fremont/Hayward for a number of years. He might know someone local in the private sector. http://mydoctor.kaiserpermanen...er/jeanlucszpakowski But, yeah, probably a good idea to find out who is in your network first. Then you can give the list to the Fremont GI Department folks and he could may e recommend from there. I did something like that... [ more ]
Diane T. Hi Jan, Yes, I did call Dr. liu's office and talked with a nurse practitioner. He said that Kaiser drs. Do not keep in touch with out-of-network drs and being so far away, the drs there would only know of doctors in the Walnut Creek area. He mentioned to call Fremont Kaiser to see if they know of any private drs. That is when I thought of asking this jpouch list. He also mentioned calling my insurance company and ask what GI drs and surgeons are on their list. Yes, "roto-rooter" is dilating,... [ more ]
Jan Dollar Have you asked Dr. Liu for referrals to other providers locally? Even though the Kaiser docs are within the Kaiser "cocoon," they usually know their peers in the community. It is not too uncommon for folks to lose their Kaiser coverage and need a referral. If you have already been out of coverage for a while, you probably can't email your doctors anymore, but you certainly can place a call. By the way, Dr. Dennen was my surgeon too, but he has long since moved to head the bariatric surgery... [ more ]
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J-Pouch ForumsGeneral Discussion
Ironman
TP Tommy pb
hfc I hope to get to Austin this weekend. I think I may be camping out at Dulles Airport in Suburban NOVA trying to get to Austin for a marathon. I try to do 2 or three gels an hour, hydrate at every opportunity, and am happy if I am in the middle of the crowd. I am nearing 55, work 12 hour days, and find it difficult to get the training in. Hope you do well at Chattanooga. If you are doing triathlons, you are doing more than the other 99% of the population! [ more ]
Tommy pb Thanks hfc! Dude you rock! Good luck on your upcoming events! What do you like to use for nutrition during your long runs? And are you spiking your water with anything? I am always trying to learn as much as possible and try different ideas. Especially from fellow jpouchers! If there are any other athletes out there that read this I would love to hear from you! Hfc if you ever make it to San Diego for an event look me up brother! Cheers Tommy! [ more ]
hfc Good luck to you. I am going to try for Beach to Battleship IM in NC in early November. I am running Austin TX marathon week on Sunday, Roanoke VA marathon in April. In June wife and I are running 56 mile ultra in Durban South Africa. (Comrades) [ more ]
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J-Pouch ForumsGeneral Discussion
Being discharged at noon from ileostomy
aka KNKLHEADaka KNKLHEAD
Jan Dollar Good for you! Best thing about the treadmill is that if it feels like it is too strenuous, you just turn it down or get off. Not like going on a long hike that you have to walk back from, even if you are wiped out. The thing with driving is that they don't like you doing a lot of flexing of the hips and abdomen right after abdominal surgery. Of course, if you drive an automatic, that is less of an issue. Plus, if you are taking pain meds, they don't want that liability. I will tell you that... [ more ]
aka KNKLHEAD Ha, ha. Thanks, Jan! The doctor said no driving for two weeks .. etc. (I need to drive on the 19th for business.) I can't blame my wife, I've been in some tough shape on and off for the last few years, and she's afraid of me over-doing it. I am very tired of being a sick person! With your approval I put the Olympics on my Acer S7 Ultrabook and walked a good pace for 20 minutes. Pretty easy. I will continue to do it daily and I may up the pace. [ more ]
Jan Dollar Sounds like things are working as planned. You could have picked up a respiratory virus in the hospital (best place in the world to catch something!), so I would not worry about stopping the antibiotic; at least not yet. Now, why would your wife kill you for taking a walk on the treadmill? Should be perfectly fine since you did not have your legs operated on. Walking is the perfect post op exercise. It is what you'd be doing if you were still in the hospital. Best thing in the world for your... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy thoughts
L Lexi
JJA I suspect docs will tell you there is no reason why you can't carry a healthy fetus to term-that's wht my GI & high risk OBGYN told me as someone with an 11-year j pouch surgery with subsequent complications person, anyway (of course you will want to have these convos with your own docs about your own specifics). Of course, no one could "guarantee" I woudln't have complications, (reduced continence, pouchitis, be uncomfortable, develop hemmeroids, etc.) My husband I were both very... [ more ]
jodiloveslife Hello--I would consult with your GI doctor and see what they have to say regarding your situation. I totally understand where you are coming from though being worried. I was worried too at first. I consulted my GI doctor and then we talked to a fertility specialist. I am 38 and did have a blocked tube. We decided to go for it with the okay from all doctors. Our first IVF try and we are expecting a girl in June. I have felt so fabulous this whole pregnancy. I feel better being pregnant!! I... [ more ]
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J-Pouch ForumsGeneral Discussion
Fiber
MurrayMurray
JJA I use both immodium and metamucil, and I use the pills and do NOT take any of the extra water. My issue is incontinence due to the loose stools and a damaged sphincter, so I aim for as thick as possible stool to manage my continence. Insoluable fiber pretty much passes straight throught the digestive system in folks like us, without breaking down much-thus you can often see the corn kernals, apple skins, etc. on their way out, and at least for me these types of fiber tend to lead to more... [ more ]
Scott F I recommend that you use the "Find" function to search for the word "insoluble." You'll get a bunch of perspectives. Soluble fiber, like psyllium or wheat dextrin, helps us keep our stool a bit thicker, and (for some) easier to control. Insoluble fiber (e.g. fruits and veggies) is okay for most of us, at least in moderation, but not as directly beneficial for us as for folks with colons. [ more ]
boy's mom On the subject of fiber, could someone explain soluble vs. insoluble fiber for j pouch. thank you. [ more ]
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J-Pouch ForumsGeneral Discussion
Feeling Gross All The Time After Permanent Ileostomy Surgery
Tiffy-pooTiffy-poo
Jan Dollar Oh my gosh! Sorry about the MS diagnosis, and those mental health issues are no help either. Hopefully, knowing what you are dealing with will help get a handle on it all. Again, so sorry about it. Fingers crossed that the MS is very slow to progress. Jan [ more ]
Lesandiego I am so sorry to hear of your new diagnosis, but glad you finally have your answers. MS sucks and they once thought I had MS after my strange neurological event (infarction that attacked my myelin in my occipital lobe). Took me years to get a diagnosis and recover. I take 1200mg of neurontin a day and it helps with the residual nerve damage. [ more ]
Tiffy-poo I just wanted to let you all know the answer to my dilemma when I wrote this post. I have Multiple Sclerosis. The only reason I went in for an MRI of my brain and spine was because I felt like my memory was was getting really bad and my mom had dementia, so I demanded that be looked into. One link to nerve damage is the antibiotic Cipro, which I was on for several years for pouchitis. Thankfully my symptoms aren't extremely painful or anything and I'm still mobile. The other problem was... [ more ]
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J-Pouch ForumsGeneral Discussion
Digesta-Cure
K kentuckyboy
Jan Dollar I suppose it might work. However, what I find rather unbelievable is a product that "cures" numerous autoimmune diseases with all natural immune modulators, without any side effects or drugs. If something is powerful enough to have a pharmeceutucal effect, how is it not a drug? And, anything that has a pharmeceutical effect can have side effects. Remember, many of our traditional drugs are plant based. It contains stabilized mannans of the aloe plant, which are known to have healing... [ more ]
kentuckyboy I am considering it because I have cuffitis and I am desperate to try anything that might work. My Doc tells me that my pouch is fine but I still suffer from frequency and pain in the cuff and he has prescribed most everything else. [ more ]
suebear Why are you considering it? Sue [ more ]
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J-Pouch ForumsOstomy & Skin
Coloplast 2 Piece Flex
P PoucherInTO
PoucherInTO Hi Again Everyone! I just wanted to give a quick update on the Coloplast 2 piece flex that I've been trying, I usually use the Coloplast 2 piece click. OK, the profile of the flex is definitely a lot closer to my body. And I can't even feel I'm wearing it - unless the bag is filled up and getting a bit heavy, know what I mean?! But then again, I couldn't really tell I was wearing the click system either as my skin really loves the Coloplast SenSura flange. It was easy peasy to apply, and the... [ more ]
chiromancer If you just want to change the bag, that is leave the skin barrier/waffer and replace the bag the system works OK and is lower profile than the system you are using. It is just that I hardly ever need to do that. However the opposite is not true you can't change the barrier and reuse the bag or remove the bag to look at the stoma and then reuse the same bag. Yes the barrier strips look like half moons and will probably work really well when you have recovered [ more ]
PoucherInTO Hi Chiromancer Thanks for your reply, it is the adhesive based coupling system and I was wondering how effective the adhesive would be if I wanted to change the bag along the way. The company is sending me a bunch of the barrier strips - they look like half moons, right? I've heard great things about them for swimming, sports, etc and can't wait to try them out as once I'm recovered I want to get back to the gym 4/5 days a week and I'm a person who sweats a lot with cardio so the extra... [ more ]
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J-Pouch ForumsGeneral Discussion
Confused by results
N Nroley
ActiveUC'er @Jan - can you point to anything to summarize what you described (that IBD is a whole spectrum of diseases). I haven't heard that before and would like to read up on it. [ more ]
Jan Dollar The Prometheus test, or any of the IBD serology tests, are not conclusive. They are only for tipping the scales in one direction or another. They are beginning to understand that IBD is a whole spectrum of diseases, not just UC or Crohn's. So, you cannot just be "pigeon-holed" into one category or another. Basically, it does not really matter too much what it is called. What matters is that they treat based on your presentation and if it works, then that is good enough. Jan [ more ]
Nroley It's supposed to say inflammation, not infamy action. Sorry, auto correct. [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
anul sex
F faithful
Rosie128 I had incontinence with a j pouch, it was from damage to the spincter muscles that occurred during surgery. If a careful surgeon's hands could cause damage, I would hate to think of the damage that would be caused to the muscles through intercourse. I would absolutely not risk it. I have never felt as undesirable and unlovable as I did while I was fecally incontinent. Nothing, I mean Nothing is worth that risk! [ more ]
dawn58 My doctor told me NO WAY. [ more ]
skn69 There are different opinions on the subject and a lot of them depend on how much cuff was used when your pouch was created. The longer the cuff the more distance that you have before your pouch is reached. I have never been a fan of anal sex (and to be perfectly honest, things have been close up down there for the last 34yrs so it is a no brainer for me) but can understand that it is an integral part of other people's sex lives. My opinion is based on the fact that we have suffered so... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cephalexin 500 mg
H hopetofeelnormalagain
Jan Dollar Well, it is not just cephalexin that can lead to a C. diff infection. It is pretty much any antibiotic except Flagyl or Vancomycin. The question I would really be asking is why on earth would your doctor prescribe antibiotics for the flu!?! Antibiotics are totally inappropriate for a viral infection. Unless you had a secondary bacterial infection, I just do not get it. I was put on IV antibiotics when I was hospitalized in December for a presumed virus, but they could not figure out what was... [ more ]
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J-Pouch ForumsPouchitis
Is there a connection between low vitamin D levels and pouchitis?
S Subzeromambo
AllyKat Oh great, lymphoma runs in my family. My vit D level is high. I'm going to run this by my Functional Medicine Dr as she use to be a cancer doctor. [ more ]
clouseau I had low Vit D and studies show there is a link between autoimmune diseases and low VitD. I have a study that shows Vit D significantly increases your risk of lymphoma and I have lymphoma. UC- crohns put you at a much higher risk for lymphoma, another auto immune disease, they are all somewhat connected. [ more ]
JJA I had/have chronic refractory pouchitis (medically managed pretty well right now), and was found to have low Vit D. I also take once weekly Vit D, 50,000 I think. Seems to be a relationship between gut inflammation and low Vit D, but I am not sure it is causal or just a correlation-does low Vit D cause inflammation, or is it harder for us to absorb/process Vit D with high inflammation? [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics vs. digestive enzymes
HockadooHockadoo
Scott F For the first 6-7 years I didn't bother with either one and did just fine. Once pouchitis showed up I had a good reason to look at probiotics. VSL #3 is the best-studied, and that's what I currently use. I recently added S. Boulardi, which is a yeast (rather than bacterial) probiotic. In theory it should reduce my risk of C. Diff from the antibiotics that I now take. The gas sounds like the bigger deal for you, at least right now. Most of us can't safely fart off the toilet, so gas builds... [ more ]
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J-Pouch ForumsHelp! Need advice now!
hair loss whilst tapering prednisolone
winter wishwinter wish
draegs My hair started to thin and fall out while on prednisone...even while tapering off of it. Eventually it did return to it's original state though. [ more ]
winter wish Thanks Jan. Its been falling out over the last 4 months and still hasn't stopped hoping it will soon Linda [ more ]
Jan Dollar I am certain it is not just the prednisone taper, but also the amount of time you were so sick that you needed the prednisone! I have not had any issues with hair loss with short term use or low dose. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Rookie j-poucher needs help!!
S Supersonic
PolypsAplenty Oh my gosh - another local boy! It's really early on in your process, it's going to take at least a few months to get used to it. For me, Metamucil (twice a day after first and last meal - 1 tbsp in 4 oz water) made a world of difference. I would slowly make changes to your diet and medicine so you know what's actually making a difference. For sleep, it's rough in the beginning - I was waking up almost every hour. Over time, your body will get more used to it. 1 tab Imodium before bed is... [ more ]
hawk3kt When I was 1 month post-op there was no way that I could have been working, I was still in the bathroom 15-20 times a day and sorting out the pouchitis problems. In fact many times I was wishing I still had my end ostomy and bag. Now, with the benefit of 2+ year post op - I offer this advice... Learn how what you eat effects your pouch. Avoid sugar, simple carbs, carbonation, and beer. Focus on foods that slow down your intestines (starches / greasey foods) - Focus on good health and... [ more ]
clz81 supersonic, i totally feel your pain. i did not have cancer, but was on my way there with high grade dysplasia. my UC was well controlled for 15 years so it was a huge shock after my biannual scope when i was told my colon needed to come out. i went from being very healthy and normal and planning my second child to needing these very unexpected surgeries that i had never heard about before. a month is not a lot of time to adjust. you will hopefully get comfortable with your new equipment... [ more ]
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J-Pouch ForumsPouchitis
need a new antibiotic
M MITCH
MarkGregory Interesting reading about the bourbon. I am curious to know what affect it has, or why it works for you. Thanks. [ more ]
hawk3kt I have suffered through multiple bouts of pouchitis throughout my 2+ years with the internal pouch. I have tried many antibiotics, with results similar to yours. I have found that the most effective treatment for pouchitis in my case has been about 1.5 ounces of bourbon daily, and a low sugar diet. I know this seems odd, but it absolutely works for me, and it absolutely takes away the vast majority of "butt burn." Using this method I have gone from massive doses of antiboitic, to 3-6 Xifaxin... [ more ]
boy's mom Trying doxycycline 100 x2 a day right now. [ more ]
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J-Pouch ForumsGeneral Discussion
Info about cleveland clinic
L L.DL
ActiveUC'er They are probably most concerned with the "current" status of things in your body. I'm guessing anything that was tested prior to 2009 they would want to have re-tested anyway. [ more ]
Scott F It is common (though fortunately not universal) to discard medical images older than 5 years, and other old records are also often discarded, particularly for inactive patients. As we transition from paper to electronic records there seems to be more willingness to keep records longer. [ more ]
L.DL Thank you for help, I am really looking into it. As for my records the only issue I have is my scan reports. They could not give me copy's prior to the ones of 2009. They said they didnt keep anything before that. Is that possible? [ more ]
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J-Pouch ForumsGeneral Discussion
A More Complicated Choice
T Tornado6
Scott F The effect of rookie residents can be more subtle than just the care they provide to you. For example, in July at a teaching hospital the nurses are distracted as they try to make sure the new residents don't screw up too much. [ more ]
ActiveUC'er Tornado - I had a similar reaction with one of my surgeons. She's only three years older than me and I'm still finishing up my Ph. D.! It's like, what am I doing with myself. Inevitably my mom or someone answers "being sick" - thanks. I have had fellows/residents on my case before at Cleveland Clinic. When I was a more complicated case (I was hospitalized for two months...nothing to do with a jpouch screw-up), I was passed from one surgeon to another when my first surgeon went on a... [ more ]
Pluot I would just ask him or his nurse straight up. I had my takedown in July and I asked the nurse. She said it didn't really matter that the new residents would be in the hospital, because I would only be seen by my surgeon and his chief resident, and that was how it shook out. I suppose it depends on the size of the hospital, how many CR procedures they do, etc, but I got the feeling when I was there that they considered my procedure more "advanced" and the only inexperienced staff who ever... [ more ]
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J-Pouch ForumsGeneral Discussion
GI doctor in Toronto
GaylaGayla
Murray I had my colectomy and pouch done at Mount Sini also Dr. Erin Kennedy was my surgeon. [ more ]
Gayla Thank you so much for taking the time to reply and for such a quick response. I passed the info along and they new the hospital well. Thank you again! Gayla [ more ]
PoucherInTO Hi Gayla The best IBD hospital in Toronto is Mount Sinai Hospital, on University Avenue. If your friend is in a peripheral hospital have her physicians put in a referral for a second opinion. The Colorectal surgeons are Zane Cohen, Robin McLeod (she has been my surgeon for 19 years and is excellent) and Helen MacRae. There are a whackload of GI specialists there, mine is Steinhart. Good luck and what a great friend you are to be looking out for your friend's mother! [ more ]
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J-Pouch ForumsGeneral Discussion
Weight Issues after Surgery #1
B boyleb18
LizTish22 I'm in the same boat! Gained 50 lbs in two months after my first surgery (two step) with steroid therapy due to adrenal insufficiency. I thought because I poop so frequently the weight would just fall off. I totally agree about the body being in starvation mode! I was so sick before my surgery I probably ate once a day... [ more ]
Jan Dollar Yep, to lose one pound, you need a deficit of 3500 calories. Eating healthy does not do it. Eating small does. On my medical weight loss program (it was not a commercial program, but through Kaiser), we were allowed six small meals a day, 160 calories each. You think you are going to starve, but you don't. The key is not to have more than 2-3 hours between meals or you get hungry (except when you are sleeping, of course). Hardest thing I ever did. Harder than this surgery if you can believe... [ more ]
ActiveUC'er I'm in a similar boat (need to lose weight before my next surgeries). I know it's going to suck. If you aren't already, count your calories and measure your food. Seriously count them for at least a month. There are lots of free trackers out there (Livestrong, MyFitnessPal, etc.). You can still get too many calories with healthy food. Counting calories makes a huge difference for me. You might realize that your cheat day is wiping out 75% of your calorie deficit for the week. Also consider... [ more ]
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J-Pouch ForumsGeneral Discussion
vsl3
Lizzie KnottLizzie Knott
Scott F IMO VSL kept me off antibiotics for a couple of years. I think it still helps, though I now also need antibiotics. [ more ]
CathyA Hi Lizzie, I've been trying to get my insurance co to cover the Vsl ds, no luck, my drs office told me to go to this website (Nord.org) It's an organization for rare disorders, they help people with problems, one of which is helping with Rx, I'm in the process right now, waiting on paper work. Give it a shot. The phone number is 203-744-0100 ext 266. Cathy. All the Glory is Gods [ more ]
jodiloveslife I love and swear by VSL#3DS. It may not work for some, but it has certainly helped me.It is worth trying if you can. I do not get pouchitis when I take it regularly. I did get a little bloated and gassy the first week or so on it, but that went away. It is a bit expensive and if you have insurance, most RX plans will help with the cost--you do have to have an RX of VSL#3DS though. Best of luck and hope it works for you if you start up on it! [ more ]
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J-Pouch ForumsGeneral Discussion
Confusion
M Matt34
mgmt10 I have heard this from my surgeon too that people who are taller (have long torsos) or overweight can make the surgery more challenging to do. Something to do with the reach of the pouch to the anus for anastomosis. I am very happy with my j pouch. It literally gave me my life back. Sounds like the surgeon you have is confident. Did you ask how many j pouches he has done or if any of them were on overweight patients? [ more ]
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J-Pouch ForumsPouchitis
Low carb breakfast???
ktakta
AP I eat nuts for breakfast. i also take psyllium fiber several times a day with lots of water. I have gone from chronic pouchitis, to almost two years with no antibiotics. Any time I feel it coming on I go heavy on the fiber and it knocks it out. [ more ]
kta Thanks. It looks like, just like most things, some research is the way to start. I've been in the thinking stage for a while because of chronic pouchitis or overgrowth. I'm tired of cipro. It has worked well for me for almost ten years, but I worry about the possible long term consequences. Knowing me, I'll think for a while longer and then slowly incorporate changes. [ more ]
liz11 you can also buy lactose free yogurt. Green Valley is the brand. they have other lactose free things like kefir and sour cream too I do a lot of smoothies with lactose free kefir and fresh fruit. and if you are still hungry after that. eat a big tablespoon of peanut butter! also of course lots of eggs. have to mix it up though. poached one day. scrambled with cheese the next. omelet with smoked salmon the next, omelet with spinach and feta the next.. get my gist here. [ more ]
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J-Pouch ForumsGeneral Discussion
internal anal pain
dennyp3dennyp3
Jan Dollar Yes, an anal fissure is like a paper cut and your BM is the lemon juice! Fiber supplements can help too, because they tend to absorb that caustic fluid. As to being treated like a drug seeker by the ER, I can imagine how angry that would make you. Something to avoid, for sure. This is why I think being sent by your doctor helps prevent that stuff. Your own doctor could have changed your prescription and that might have avoided the pharmacy snafu. She might have even said to double up on your... [ more ]
dennyp3 Thanks Jan, First I want to say that I've trying your suggestions and they seem to help. 2nd, I'd like to make it 100% certain that I was in no way seeking pain meds. I know you believe that, but I'm not sure the ER does for whatever reason. Next I'd like to ask, am I correct with my assumption that a fissure feels like something is ripped or torn internally and that after a BM it hurts like a son of a gun? That's what I have going on, so much so that I'm not eating much because I don't want... [ more ]
Jan Dollar What a mess! I certainly can understand your deserved frustration. I guess that is part of the fallout of our improved, integrated narcotic watch system. Unfortunately, there are lots of drug seekers out there and it just makes it miserable for those of us who are just trying to function. You'd think that your doctor who you have a pain contract with should be able to override that nonsense. But, that is a separate issue. I would suggest that you do not assume what your GP or GI would do,... [ more ]
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J-Pouch ForumsGeneral Discussion
Possible Prolapse
peteraudio7peteraudio7
Jan Dollar Prolapse is not very common, and would more likely be protruding all the way around. What is more likely (and quite common) is a perianal abscess. When it is just beginning it is just tender to touch. As it progresses, it becomes extremely painful, and there is little doubt. Start taking warm sitz baths (as often as you have time for) and call your doctor as soon as you can. It should be treated as soon as possible to avoid it causing a fistula. If it is a perirectal abscess, it is deeper in... [ more ]
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J-Pouch ForumsGeneral Discussion
Had my 4th Needle/Knife sinus procedure yesterday...
PouchomarxPouchomarx
aka KNKLHEAD Poucho, watching you closely and hope for the absolute best! Keep us updated! [ more ]
Pouchomarx I heard back from Shen. He wants to try one more needle/knife therapy in 1-3 months. He stated the original bear clamp he used on my tip leak fell off so he tried something different this time.. i was hoping he was going to say we were done. Good news is I have no inflammation still even being off the Entocort for almost 2 months now. [ more ]
Pouchomarx I WILL SEND IT AGAIN TONIGHT, THANKS [ more ]
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J-Pouch ForumsGeneral Discussion
Rectum Inflammation/severe pain
G grandmaof1
Indy_Dave sounds like the food your eating might contribute to some of the burning. The foods that cause me burning are: Fried Foods - Fried eggs the worst Greasy Foods Cinnamon Hard to digest veggies like carrots/corns/beans Some spicy stuff but not all... Sugar in ice cream/shakes ect are a killer... [ more ]
grandmaof1 I am passing stool. Sometimes all liquid and sometimes I have to strain a little. But every times I go it burns up inside. I do hold it as long as I can and I don't ever have accidents. Thank Goodness but the burning inside is so painful. [ more ]
pouchington are you passing stool ok or straining? [ more ]
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J-Pouch ForumsPouchitis
Anemia and Absorption Problems
DebthetravelerDebthetraveler
Scott F Lots of us seem to have some nutritional deficiencies. I suspect that absorption may be part of it, but perhaps a bigger factor could be that we tend to eat a bit strangely. We adjust our diets to manage our stool consistency, our bacterial balance, our transit time, our hydration, and goodness knows what else. What's left can be a bit strange. Supplements seem to work a bit better when taken with food. It can take a while to resolve some of these. My vitamin D deficiency has been resolving... [ more ]
ARP83 I self medicated with peptides for absorption problems I ran GHRP6 200mcg 3x's a day left thigh right thigh then abdomen. It causes hunger which is good, itll for you to eat I now run impamorelin at 100-200mcg 3x's a day. can find them on www.pepbridge.com . Aslong as you arent exceeding 1000mcgs youll be fine. It causes your body to secrete its own growth hormone. I will catch flack as everyone wants a medical study done to back it up....however since on it i dont take anything at all other... [ more ]
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J-Pouch ForumsHelp! Need advice now!
J Pouch and Gastric Sleeve = I don't know what's wrong
TheaThea
Jan Dollar Yes, arthritis is the most common extra-intestinal manifestation of IBD. http://www.ccfa.org/resources/arthritis.html It can be quite insidious too. Mine started 30 years ago with bouts of tendonitis in my elbows and wrists, then came plantar fasciitis and Achilles tendonitis, followed by knee pain when I was around 40. A few years later came the low back/upper buttock pain. Then I was sent to the rheumatologist and was diagnosed with enteropathic arthritis, a form of spondylitis. I am now... [ more ]
Thea Thanks so much for the info, my Dr won't give me antibiotics without seeing me mostly due to the fact that I have a long list of meds that no longer agree with my insides. I have never experienced pouchitis which is prob another reason. I did get some MiraLax this afternoon it has helped some. I'm trying to just deal because I do not want any part of the ER...I'm going for my yearly physical next week I am going to ask for a full blood panel including for pre menapause. Is joint pain common... [ more ]
Jan Dollar Being 40 and night sweats sounds a lot like me until I turned 50 and my periods stopped. Yep, I had 10 years of perimenopause with night sweats and hot flashes with the smallest amounts of alcohol. I wasn't in full on menopause during that time because my hormone levels were reportedly OK, at least during the moment my blood was drawn to check them. Many of your symptoms could be partially or completely due to perimenopause, but the fact that you've lost both your colon and most of your... [ more ]
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J-Pouch ForumsGeneral Discussion
Seton----help!
CristolCristol
n/a It does hurt once in a great while, if I pull or tug accidentally, or too hard - once again, it's the outside hole (the "v" side) that causes the few issues that I have had. I strongly recommend a bidet - you can find a wide range of them, from a simple do-it-yourselfer (like mine: http://www.amazon.com/Luxe-MB1...=bidet+toilet+seat), or a bells and whistles: such as a toto - and everything in between. You will only have to gently pat dry after using the bidet, so you should have few... [ more ]
Cristol I am so thankful for your response....it makes it a little less scary. My opening will be beside my anal area.....there is a cut to the side that they had to do for the abscess. Does it hurt to wipe? Thank you so much!!! [ more ]
n/a I'm not sure exactly where your outside fistula hole is, however, I have a rectal-vaginal fistula, so the seton runs along the perineum. I have found that if I overdo certain exercises, such as squats, lunges, etc., I will have some bleeding. It's not easy to know where the bleeding is actually coming from, but it's my suspicion that the pulling/rubbing of the seton on the exterior fistula opening causes the bleeding. After the seton is placed, you may want to take a little time to let... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Feeling so lost, please help!
EricEric
liz11 The products josh mentioned are good. But taste DISGUSTING. I have tried ceralyte.. it is a true WHO solution. But I couldn't tolerate the taste. I now use Jianis Brothers packages of oral rehydration salts and mix them with crystal lite. This is very cheap too. That is ALL I drink (well other than the occasional wine or beer!) Also yes.. peptamen. I was on that with that ileo #3 that I wrote about earlier. Peptamen Prebio is the one Dr. Shen put me on. Extremely expensive, but he knew the... [ more ]
skn69 Hey sweetheart, Just been surfing and happened on your post...I am so sorry that this whole situation is not getting better but worse...I do know how bad it is and how bad it gets sweetheart and you need a close loved one to help you walk your way through this all. I started having those chest pains a couple years back...just like you I had started to clean my house when...Boom, chest pain, couldn't breath and then panic...turned out that in my case it was my galbladder that had gone... [ more ]
Goody2shoes You do have very positive thoughts underneath it all !! Try to be positive and stay positive. I wouldn't worry about 'only' having 13 feet of small bowel - that is 4 metres, and that is actually double the length of mine !! [ more ]
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J-Pouch ForumsGeneral Discussion
Do other UC symptoms carry over after j pouch?
JR Jen R
ActiveUC'er I went to a rheumatologist at Cleveland Clinic. She saw the vaginal ulcers I had (and my previous bloodwork). I went over my arthritis issues, mouth ulcers, and pydoderma gangrenosum. Her determination was that I extra-intestinal manisfestations of IBD. Even though vaginal ulcers are rare for UC. Given my recent psycho surgical complications recently, my surgeon's want me rechecked for Bechets. Although that's not the most likely candidate. I'm going to need to have a rheumatologists input... [ more ]
Pluot ActiveUCer, did they ever look into a Behcet's diagnosis for you? I think I remember you mentioning it once a while back [ more ]
ActiveUC'er I have no colon (no jpouch yet...long story) and since having my colon removed I've developed horrible arthritis. Before being dx'ed with UC, I had horrible apothous ulcer outbreaks. I have one right now with about 30 sores. I can't eat/drink. It sucks. I've used a magic mouthwash in the past. It's lidocaine, diphenhydramin, and pepcid that you mix around in your mouth. I get it from my dr. It helps keep down inflammation and the lidocain is a nice pain killer. I just had something... [ more ]
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J-Pouch ForumsGeneral Discussion
imodium vs lomitol
R Rebe0505
Rebe0505 jan well i never have to concern myself with constipation..haha never has happened ever since colitus and now jpouch..thanks for explanation between two.. [ more ]
Jan Dollar The main ingredient in both lomotil and Imodium (loperamide) act in pretty much the same way. They are opioid derivatives that work in the opiate receptor for effect on the intestines. This is the side effect of all opiates that is usually a bad thing: constipation. They lack the pain relieving and euphoric effect in therapeutic doses. Even in high doses, there is no opiate withdrawal syndrome with loperamide, but there may be with lomotil, especially after high dose, long term use. That... [ more ]
jeffp Oh yeah, and I've never had a side effect from either! [ more ]
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J-Pouch ForumsGeneral Discussion
medical marijuana? What kind?
linalina
dgtracy I wish medical marinara was here in sc. I have to go through other avenues to get mine and even then it's only for nighttime because I don't feel the pouch as much and I don't focus on it as much so I drift off before I know it and I think I sleep a little longer. Still get up often though [ more ]
Jilly Hi there! I'm a BIG proponent of medical marijuana! I have so much info and so much to say about this that I'd rather chat than type. If you email or PM me with a phone number, I'll gladly give you a call! And I'm on Cymbalta too... Jilly [ more ]
See all 2 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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