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J-Pouch ForumsHelp! Need advice now!
Post-Surgical Nausea?
H Hayley14
Rachel88 Maybe try eating smaller meals? It took my body a long time to remember how to process food. I think those days without food when you are post-opt NPO can really mess with your system. Just take it slow and chew, chew, chew! [ more ]
liz11 possibly you may be getting dehydrated. Be sure to drink some electrolyte beverages.. but not sugary filled ones like gatoraide. Also, are you on any different drugs? [ more ]
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J-Pouch ForumsHelp! Need advice now!
Proctitis and j pouch?!?
S sally85
sally85 Thanks so much Marie, I'm thinking when I have the j pouch to definently have the lining stripped away as I think it's my only option to avoid uc in the rectum but I just worry that I won't have muscle control :/ but it may be a risk I have to take as if do get the uc in the rectum I wouldn't be able to have steroids at Allan's I reacted so so badly to them when I had uc prior to the ileostomy and its literally left me scarred for life [ more ]
TE Marie Ask if you can take Canasa, mesalamine, suppositories while pregnant, to treat the UC going on inside or something similar. This should help with the bleeding. When you do get around to the j-pouch creation and they leave the 1-2 cm of rectal tissue at the cuff I would request they do a mucusometry, probably spelled wrong. That they scrape off the mucus lining before attaching the j-pouch to it. This lowers your chances of having further UC problems stemming from that 1-2 cm. I had UC in my... [ more ]
sally85 Gosh! I hope your feeling better now, I know what you mean about the pain I was in hospital a few weeks ago with it, Im not on any medication at the moment I probably should be for the bleeding I'm getting but who knows whats going on at the moment :/ I have been on masalasine though but that was a year and a half ago so I'm not sure why my levels are so high [ more ]
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J-Pouch ForumsHelp! Need advice now!
Urgent!
B Bergie77
Jan Dollar Not everyone has checked their notifications settings to be sure that they get an email when a PM has been sent. If that has not been done, the member would not know that they have a PM until they return to the site. Remember, a few months ago everyone's settings were reset to no notifications. So, we all have to go to our profiles to check it (that's why I have that "sticky" thread about it). Jan [ more ]
TE Marie Did you sent them private messages? [ more ]
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J-Pouch ForumsGeneral Discussion
Bathroom Friendly Vacations
CTBarristerCTBarrister
hfc The toilets in China and India are truly an experience! Take your baby wipes! [ more ]
Jan Dollar Lew, sounds like a fabulous time! We loved Venice so much our first trip to Italy, we went back last year and spent a week there, in an apartment! Heaven!! Yes, those foreign toilets can make you feel like an idiot. Our first trip to Europe was on a river cruise. When we were wandering around in Dusseldorf I was so pleased to find a public toilet, and there wasn't even an attendant collecting money! It was modern with everything automated by motion sensors. No problem....until I went to... [ more ]
skn69 Wow! Lew, Your trip sounds fantastic and I am thrilled that your pouch behaved the whole time...European bathrooms require a PHD in door locking, light turning on and bowl flushing...I've lived here for 30yrs and honestly am still surprised at the ingenuity of some of the bathrooms here...yes, I still get locked in on occasion but now, I test the locks a couple of times with the door open before locking them behind me...having a multi-tool on your keychain w/flashlight helps too. So where is... [ more ]
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J-Pouch ForumsGeneral Discussion
Swollen cuff
P Pluot
mgmt10 Being that your takedown was recently, could the swelling be a normal part of the healing process? [ more ]
Pluot Bump! Sorry guys, any thoughts on this? I'm concerned that inserting the proctofoam is actually irritating the cuff more, but then I don't know how it will ever heal if I can't deliver meds to it... [ more ]
Pluot Thanks for the response jeane. Have you ever used Proctofoam for your cuffitis? If so, how long does it usually take to kick in? [ more ]
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J-Pouch ForumsGeneral Discussion
dark skin around old stoma sight?
K KeepFighting(Manny)
AyrishGrl I have had my stoma for 8 years (YIKES!) and I use a convex wafer and the skin where the wafer sits is a different color than the rest of my belly skin. There is a definite shape left by my wafer. I would say its normal. [ more ]
Spooky Yes, I had a discolouration of the skin around the ostomy site. I'm not sure if it's exactly what you describe; mine was sort of an after-impression of the barrier. You could actually see the square outline of the flange on the skin for quite some time. The skin there was darker and somewhat shinier than the skin on the rest of my body. Even my surgeon commented on this. But I had my ostomy for almost 2.5 years, though, probably why I had marks left. The discolouration eventually faded... [ more ]
Disneynut I had that dark circle for a long time. It's now all white. I can't remember how long it took, but one day it was all gone. [ more ]
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J-Pouch ForumsGeneral Discussion
Mayo Clinic
L LisaT
clouwho2 LisaT - I'm new here, hi! I just had takedown surgery (9/10/13) at Mayo in Phoenix. I don't know what their status is, but I flew from Utah to have the surgery here and I couldn't be happier with my choice. I had an incredible - extremely cautious, careful, and conservative - but incredible surgeon. He has been really good to me. I had no problems except dehydration post ileostomy (that's my body dealing with no colon, not the surgeon's fault). I feel amazing 1 week post op takedown and have... [ more ]
TE Marie I don't think you can go on just one person's opinion you need to go and check out the facility for yourself. But in the end it's all up to you. This is assuming you are wanting j-pouch surgeries. Please find out how many surgeries the surgeon has performed over how many years. If s/he will perform a laproscopic or open surgery and if you have UC how much of the rectum will be left at the rectal cuff, if any, and if there will be a mucosomy performed. Will they do a double stapled procedure... [ more ]
vanessavy I think it all depends on you, your case and the doctor. I went to MD anserson since they are the best for cancer treatment but I HATED the nurse in charge of the jpouch dept and could not imagine being with that place through it all. I go to CC because I think they are the best for my issues and I get nerve blocks done there, the top pain specialist in the world is at CC. I am sure every hospital has capable doctors and surgeons. For FAP related crap though the place I go to is Hopkins... [ more ]
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J-Pouch ForumsGeneral Discussion
Figs
CTBarristerCTBarrister
skn69 CTB, It all comes out in the end, no matter what you do! Sharon [ more ]
CTBarrister Dried figs, dried apricots, dates and prunes are all cousins in the natural laxative family. I think figs and prunes have the greatest laxative effect on me. As has been mentioned in this thread already, dried figs are a great source of fiber, copper, manganese, magnesium, potassium, calcium, and vitamin K, if you do not manage to crap all of it out. [ more ]
CeeeeCeeee I get the same reaction from very expensive Turkish dried apricots. I need to learn to eat just a couple at a time. (That'll be the day!) Sometimes I just decide to "pay the price"! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Am I the only one?
M mads101
Jan Dollar This is common both with us j-pouchers, and in the general population. If you do a search here, you'll find that it is a common question. So, don't feel that it is a silly concern. Basically, when you are on or around your period, there are prostaglandins produced that cause stimulation/cramping of the muscles in the uterus, and it also affects the gut. This is why they prescribe ibuprofen for menstrual cramps. It inhibits prostaglandins. If you tolerate it, you can try some during those few... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Need Recommended GI Docs at Kaiser in SF!
M MixelBlick
MixelBlick Thanks for the quick responses. I have scheduled an appointment with Dr. Pritikan for tomorrow and am looking forward to resolving this troublesome possible stricture. Thanks again!! [ more ]
chiromancer I only saw him once at Kaiser in SF but I went to Jonathan Pritikan on the recommendation of my surgeon. Seemed to be competent. In the North Bay I have been to Jeffery Fox and Jennifer Hewett both are quite good. If concerned about sedation/pain issues Hewett has always been very aware of my comfort. I had numerous colonosopies with Fox, always sedated. I personally dont/didn’t (pouch removed now) have a problem with unsedated flex sig or pouch scoping. [ more ]
Jan Dollar Dr. Lu at Kaiser SF was my son's GI when he was first diagnosed with pancolitis about 8 years ago. At that time he was in Fremont and has now transferred. He seemed OK, not a big talker, but would explain things when asked. My son had an upper endoscopy and colonoscopy at the same time and does not remember either, so I guess Dr. Lu believes in pretty heavy sedation. Since you suspect a stricture, I would think you need something. I don't have any sedation with my scopes, but I don't have a... [ more ]
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J-Pouch ForumsK-Pouch Korner
Living with a valve slip
A AlexanderC
Edee Hi Alexander, I'm having exactly the same problems as you! Same hospital and same surgeon. How are you today and are you going ahead with surgery? Rachel [ more ]
AlexanderC I meant 'path' not 'oath' (although there is often swearing involved!) If anyone else has experiences of keeping the catheter in for weeks and the outcome, I would welcome your insight Alexander [ more ]
AlexanderC Thanks Sharon. I have had a scope and scan and it is just slightly slipped which means problems intubating and occasional seepage. Since getting out of hospital last week it has actually got easier - I have found if I lie back, relax and breathe slowly I can intubate without using the bougie to find the oath. One thing you said is very interesting - about keeping a catheter in for 30 days. I was considering that but was not sure if it would work? Sounds like it might be worth a try. One... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Constipated!
R rashad
rashad Just an update for future readers: I passed the stool about 16 hours after my last meal finally, to my relief. I continued to have cramps for 5 days afterwards, though each day was better than the last. Note that I ate very small amounts of food each meal, so as not to overload my bowels. I am now 100% fit again, many thanks to above members [ more ]
rashad Thanks J-pouchers, I definitely feel mentally relaxed now. Will monitor it closely and let you know if all's well. For future readers, I don't recommend eating whole papayas or similar fruit, but instead just a small portion! [ more ]
Jan Dollar Agreed. Also, lay off solid foods for a day or two and increase fluids. Warm liquids are good and also fruit juices. Don't panic. This is pretty common. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
GI Doc Burn Out Due To Constant Distress
Mental KaseMental Kase
Mental Kase Agree, Depending on precisely where I tag myself with that pen it can be uneventful or a nasty bite that turns into a purple welt. As for the Narcotics, they all have a unique personality. As you say, I found Norco sort of energizing and beneficial, almost a life tonic, just no downside for me there. Lol, and that's the problem, it's just all good. Very hard to prevent dose creep (yet, you've managed it, very good). **Below is my humble opinion only** Morphine is the sleeper dozer pill with... [ more ]
Jan Dollar I think the weakness, fatigue, mental effects of opiates are mostly when you first begin them. That effect should dissipate as you acclimate to it. For me, I am actually more mentally alert after a dose of my Norco. Not sure why, unless reducing pain allows me to focus onother things better. Just a theory... When I was on Humira, I needed to take it weekly because I definitely felt an increase in symptoms after only a week. I guess I had developed antibodies. So I was happy to switch to... [ more ]
Mental Kase Jan, Currently injecting Humira every other week (40mg/0.8ml), and low dose Azathioprine (50mg/d) was recently added. I was just recently approved for SSD. What a relief as I'm just about worthless for any productive activity. Currently still cash pay for all but when my new Insurance kicks in I will be asking questions. I seem to tolerate the Humira though I usually feel nausea the day of, and after the injection. I can't assess the Azathioprine at all though it did not work when it was my... [ more ]
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J-Pouch ForumsPouchitis
How long does pouchitis last?
V van
clz81 I have chronic pouchitis so I'm not the one to ask. My symptoms come back within a couple days if I'm not taking something. I've been taking Pepto Bismol now for several months, which has been working very well in place of the antibiotics. [ more ]
Jan Dollar For me, symptoms improve within hours of the first dose, but this varies. You should see some positive results within a couple of days. If three days go by with no improvement, you need to call your doc and see about a different antibiotic. Jan [ more ]
Lesandiego CLZ81, Did any of your symptoms return after you finished your 10-day dosage of Flagyl? Did your pouchitis return? If yes, how long of an interim between bouts of pouchitis? [ more ]
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J-Pouch ForumsGeneral Discussion
Stiffness and soreness
C CaryO
TE Marie A few years before my surgeries, when my UC was flaring, I was very low on D and my Internist had me take some mega doses. Prescription strength like 100,000 or 150,000 units several times a week apart. Subsequently when I consulted a nutritionist she said that just getting into the "normal" range of 40 is not the optimal range. I alternate between taking 10,000 and 5,000 a day and am trying to get up to the 80 reading range. I'm in the mid 60 range now. I've also been tested for metals as... [ more ]
skn69 Here they do the 1xs or 2xs/yr vit D doses...Hubby has to do his 4xs/yr since the heart attack but mine is an annual thing...do they do it that way over there? Same with some other suppliments incluiding calcium mix for osteoperosis...they find it easier on the patient and the wallet (very cheap and nothing to remember...just 1xs after the annual visit). Took my 1st one in April...didn't notice any difference in my pain level...my only relief is exercise on a daily basis. Sitting while... [ more ]
Jan Dollar I had high hopes that vitamin D supplementation would help my joint pain. My doc began monitoring it a couple of years ago, and taking 4000 IU/day has brought me into normal range. But, alas, my joint pain persists My husband was also similarly deficient and still has his colon. He has UC though and deficiency is associated with UC. He didn't have the same joint pain. Hope supplements work for you Vanessa! Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Had JPouch surgery - please advice
P PHedges
PHedges Thank you. I'm not dehydrated yet just with so much nausea, yes I've got a prescription not sure it works as good as I'd like to but it has to do for now. [ more ]
beucfree If nausea is the reason you want to go to ER, then be informed that they would most probably do nothing but give you nausea medication through IV. But if you are dehydrated, then I would say head to ED and get some IV fluid. If you haven’t already, call your surgeon and get prescription for nausea medication. Nausea is very common after first surgery. I had it for weeks if not months. I was hospitalized 2 weeks after my surgery because I couldn’t keep up with fluid intake due to nausea, and... [ more ]
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J-Pouch ForumsGeneral Discussion
Something new for my diet
MT Mary Tara
Mary Tara Thank you for your replies, it's always very helpful indeed. Much appreciated. [ more ]
Jan Dollar I guess I was sort of a dummy, because I pretty much would eat whatever was appealing to me within a few weeks of my surgery. Never had any problems with anything, other than some diarrhea (and adding to my waistline!). But, it is fine to experiment with foods, especially foods you really want. Just go easy on the portions. Jan [ more ]
suebear I eat all nuts,seeds, and copious amounts of popcorn with no problems. If you think it might bother you, try eating a small amount and see how you do. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
HGH for J-Pouch
A ARP83
skn69 Sounds interesting...keep us posted on any incoming info please. Sharon [ more ]
boy's mom Curious if anyone has had anymore experience with growth hormone since these last posts? Thanks. [ more ]
dew I started just before my j-pouch. Had a brain tumor next to my pituitary and the radiation treatments put an end to any pit function. In fact I think the radiation may have contributed to my sudden onset of colitis. [ more ]
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J-Pouch ForumsPouchitis
Salofalk suppositories
MH mad hatter
Fazz These are not used for pouchitis, they work good for soreness around the back passage or cuffitis. [ more ]
Fergie Hi there. For me, I have found that the Salofalk does nothing to help the pouchitis. I was on a two month course of antibiotics, which helped tremendously. But once off them, and only using the Salofalk, the pouchitis returned. [ more ]
Jan Dollar This is just another brand of mesalamine suppositories, so should work the same as Canasa. I think there are a number of members here who have used them. I think that brand is only available in Canada, and the UK. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Question re: Pentasa (aka Rowasa) enema
SpookySpooky
Laney I just want to thank you, Jan, for being so kind in answering our questions. You seem a voice of calm and reason. Thank you for that! [ more ]
Spooky Absolutely, I'm definitely not using it. I'm not even sure it's worthwhile talking to the pharmacist, since I'm sure sure she'll just tell me to call my doctor back for advice - and to that I say, see above. What's unfortunate is now I have 3 unused boxes of the stuff. I guess I'll hang on to it for now. [ more ]
Jan Dollar I would talk to the pharmacist, as they are equipped to answer medication side effects (probably better than the prescribing physician or his nurse). But, you already know what the best plan is, since the difference between using it and not is so dramatic. Jan [ more ]
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J-Pouch ForumsPouchitis
Flagyl.... I finally feel "Normal"
LesandiegoLesandiego
JulieB71 Amazing...you took the words right out of my mouth. I started taking Flagyl Monday for the first time. I have been taking 5-6 Imodium a day since takedown and that was 2 1/2 years ago. I have been able to completely stop taking them and everything has improved for me just as you have described. My usual normal has been about 8 times a day, but a little over a week ago that amount greatly increased and it became complete liquid. Figuring it must be the dreaded thing I have read so much... [ more ]
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J-Pouch ForumsGeneral Discussion
Cleveland Clinic Guest House closed
A ActiveUC'er
Mike H Hi Vanessavy I am at the clinic now but going home tomorrow. Just had my J pouch takedown surgery and things are working well. My wife is staying at the Comfort Inn 10 minutes away in Independens for $55 per night (clinic rate) the only down side is no shuttle to clinic. We were paying $105 a night at the Courtyard but this place is just across the street from the Courtyard so we switched. It is older bt very clean and staff is great. [ more ]
vanessavy A dump that was way overpriced!! Good riddance. Comfort in is 80 a night, free parking and shuttle to CC or healthline takes you there in 10min. [ more ]
liz11 good point uc'er. We stayed there once, but even if it wasn't a dump, we could've never afforded to stay there again. It is unfortunate CC hasn't arranged a decent hotel with decent rates on campus. [ more ]
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J-Pouch ForumsGeneral Discussion
continuing loss of iron
BM boy's mom
phonix2g Go see a hematologist they will test you for everything under the sun. They took 10 bikes of blood the first time I went. If you are iron deficient they will most likely want to try out oral iron supplements and if those aren't doing the job the will most likely hook you up with an iron drip to speed things up. The iron supplements won't work overnight they take some time to show results. Be aware also you will almost be guaranteed side effects such and stomach pains and cramping. I noticed... [ more ]
Scott F Iron absorption issues generally only come into play if bleeding of some sort creates an deficit. This is more complicated for women, because iron loss through menstruation definitely counts. If a male has low iron then the bleeding question is usually more important than the absorption question. [ more ]
mgmt10 I have iron issues and we came to the conclusion that it is an absorbtion issue. For me, oral iron does nothing. I go for periodic iron infusions and I see a hematologist for this. I go every three months for blood work and I get the infusions as needed. [ more ]
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J-Pouch ForumsGeneral Discussion
Feeling Light Headed Every Day
K Kobe
skn69 There could also be a lowgrade, generalised infection brewing in some people (I had gram positive staff)...I carried a nasty one for about a yr before it was diagnosised..I could barely make it up the stairs in my building to get to my front door...cried for a year from the fatigue...they got a handle on the infection and after that I was fine... Sharon [ more ]
phonix2g I was extremely anemic for a good 3 months after my takedown and what you are experiencing was everyday for me living with that anemia so that could definitely be the cause. We all lose a lot of blood from the surgeries that it causes anemia in some of us. I was always anemic from my previous flare ups and most like was still when I went into surgery. This could be your problem and it will fix itself as time goes by. They had me on iron pills (ferrous sulfate) for months which helped give me... [ more ]
vanessavy I went to a million doctors this year I swear! And I googled that this is so common with fatigue and chronic pain. Get your Vitamin D checked,not B like everyone talks about. I was in and out of the ER, felt like I was going to pass out. Loss function of my legs, etc. Vitamin D deficient big time. [ more ]
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J-Pouch ForumsGeneral Discussion
Looking for some supplies.
Clever1Clever1
Mike H My health insurance covers everything y9u mentioned for my supplies and they even let me order 90 day supply atonce rather than the 30 day supply. I had my takedown yesterday so I have quite a bit left over of the bags and wafers you mentioned, along with adhesive remover, powder and hollihesive. [ more ]
Clever1 Thanks, I do not yet have a Facebook page for the belts. I guess I should. I found Dennis and Nadia's web site. I emailed them, lets see what happens. Thanks again Alan Z [ more ]
TE Marie I love your belts - clever idea! Do they charge you to have a facebook page about them? I sent my left over Convatec to the Osto group over 2 years ago. Have you ever called and asked them and the other company for samples? They sent me a lot of them. There is another group on FBook that asks for and distributes supplies. Dennis and Nadia's page, I forget what it's called. Denis has a lot of U-tubes about all phases of j-pouch surgeries through pouchitis and Nadia has similar ones including... [ more ]
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J-Pouch ForumsGeneral Discussion
5 week post takedown update! no more regrets!!!!!
K KeepFighting(Manny)
Mental Kase Yes, what Jan said. Manny, it's a Marathon. I hope the ride is smooth as silk for you too but if and when issues arise -just try to stay calm and get on top of it quickly and keep up that good attitude. MK [ more ]
Scott F I've mostly stopped feeling uncomfortable with the idea of having noisy gas in a bathroom. It's a bathroom, for goodness' sake! I will confess that I behave differently when it's not anonymous (e.g. my boss walked in with me). [ more ]
Disneynut Scott, I agree. You begin to know when it's going to be loud so I usually try to wait until someone flushes, or I flush so people can't hear. Also, if there are hand dryers, it's great. I wait until someone uses one and then go. [ more ]
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J-Pouch ForumsGeneral Discussion
Any word from Shell?
nysnys
Shell Worrall Thanks guys! What a great reception! I know, I've been really lax about coming online lately. I'll try to log on a little more often. Jill, my problem is I have to cut the white tape off my wafers (Convatec moldables) because I developed an allergy to it so they don't last as long as they used to. I've tried picture framing them with different products including those half moon shaped things from Coloplast (I can't remember the name either) along with various other products, but they all... [ more ]
CeeeeCeeee I missed you, Shell! Glad to hear from you! [ more ]
liz11 also shell look at sure seals. I find them better than the coloplast brava strips, because like jill said.. those brava strips are a downright painful mess to get off. Sure seals work great for me. I also know several others who swear by them who live in FL and swim a lot. I was just in FL a few months ago.. and I did change a day or so sooner than usual, but other than that.. no problems. Enjoy your vaca. [ more ]
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J-Pouch ForumsGeneral Discussion
Will wellbutrin be able to be absorbed without colon its hard tablet.
FrancesFrances
Mental Kase Hello- The absorption of most nutrients and drugs takes place in the area of the terminal ileum (If I remember my A&P training). The Colon is primarily responsible for resorption of water and bile salts. J-Pouchers often have stools that are rich in bile salts due to that lack of Colon. It also changes the smell and consistency of the stool. As for breakdown of pills -First they get blasted with Gastric acid and churned in the Stomach, then they get a slow journey in the upper small... [ more ]
Frances Thanks so much i was feeling little better but now i feel i could cry all day. I think it has alot to do with gaining 40 pounds. I work out 4 to 5 times a week and burn about 500 calories and eat well and nothing not a pound. I know i need to get out more but with the opium i have to be very careful driving when i can and can not. I go to therapy tomorrow and sad but i cant wait. Its through the college so they are allmost done with school and its a teaching college. Its very inexpensive so... [ more ]
saharagold I am on Wellbutrin and when I came home from the hospital after my first step surgery, I wondered what would happen to the buproprion XLs I was taking at home. Well, after the first time I took it, I just saw a fragment of the outer thin shell (it was my only white med) in my pouch. I worked with my psychiatrist and he switched me to the buproprion SR, saying that even though it was still extended release, it was absorbed more quickly than the XL. The reason it is absorbed faster is the way... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Adrenal insufficiency
T Teddybearlady
L.DL Hi, my name is Lucy it's not long I have joined the group I also have same issue which came after being in hospital for six months straight with the staff messing up on my does with steroids. Came out completely wiped out. Just breathing was an effort. Fortunately fell in the hands of an endicronolagist whom right away after looking at my medical history freaked out and could not understand that a patient is put on steroids on and off and no one looks to make sure that the adrenal glands are... [ more ]
katenet I have anitbodies to my adrenal gland (as well as thyroid and ovaries)I think she calls is secondary adrenal insufficiency. My endocrinologist monitors this very closely. This process of antibodies began AFTER my j-pouch I take a variety of meds and have been taking CREON that seems to help quite a bit. [ more ]
lovedby2 You are right on, my GI said I need to see an endocrinologist now, just as I saw one back in Oct 2012. I have mentioned before not having insurance, but my husband just excepted a good position with his job and we are waiting out the 3 month probation period and, fingers crossed, I will get insurance again! Thanks Jan for your input [ more ]
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J-Pouch ForumsGeneral Discussion
Starting VSL
P Pluot
dgtracy I started off at a one packet per day, i did have increased BMS a bit but idk about gas...i know things were very loose for the first day or two but quickly stabilized. [ more ]
phonix2g I felt the same when I first started taking it. It is a very strong probiotic and you are sending in the calvalry to take over. Your system needs to adjust to the good bacteria flow that is traveling throughout. Bloating and cramping and even increased bowel movements are completely normal starting out. Yes, I would increase you dosage slowly because some people actually get sick and throw up from higher doses too quick too soon. If you eat yogurt I've found the powder actually compliments... [ more ]
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J-Pouch ForumsK-Pouch Korner
Leak in pouch
SA Sydney AZ
skn69 Great news! Always go to the experts...and don't wait around...it is your health that matters. Sharon [ more ]
Sydney AZ Thanks! I just spoke with Clevleand Clinic and both Dr. Shen (GI) and Dr. Dietz (Colorectal Surgeon/K-pouch specialist) said to start Humira again. He will take me off of it if I need surgery. I hope this info helps someone else in the future. I have been trying to get an answer to this question for over a week!!! Thanks for the support [ more ]
Sydney AZ Thanks Sharon Can you tell me who Jan is? I didn't see her on this thread. Thanks! [ more ]
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J-Pouch ForumsK-Pouch Korner
Partial obstruction?
B Bodoni
skn69 Bodoni, With age (and maybe the age of my pouch?) I have started having partial obstructions (first began in 2007 post op with ileus and then full blown obstructions)...maybe I have a kink up somewhere in the small intestine (always in the same spot) or a partial stricture but generally it clears itself up in a couple of days...linked to fiber my input?...I go on a hot liquid diet (tea, soup, broth...) for a day or two and do some gentle yoga exercise to try to 'stretch it out'... I tend to... [ more ]
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J-Pouch ForumsGeneral Discussion
What is going on with me?
G grandmaof1
Jan Dollar Yes, call your GI. He may suggest increasing the dose of Cipro. If your symptoms stay the same or get worse, then more of a chance it is C. diff. He might have you start Flagyl instead. Anyway, there are multiple ways to approach this, and best to touch base with your GI, even if it is just to tell him what is going on and what you planned to do. If you do decide to stop the Cipro, I'd give it a few days before starting the Pepto Bismol, just so you can tell what effect each change has. Jan [ more ]
Scott F If it is C diff just stopping the Cipro won't fix it. Best to discuss some steps to take with your doc, if at all possible, rather than just making it up. And Jan's idea about getting tested for C diff in advance, if you can work it out, is superb - the sooner the better. [ more ]
grandmaof1 Oh good idea Jan. You are so awesome with all your information you have. Maybe I should just stop the Cipro and see what happens. And if I do stop I could start taking pepto bismol. Thanks so much. It is greatly appreciated. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Its Like Night and Day
P phonix2g
phonix2g I did notice leakage after I was dilated in the office with just his index finger. He told me that it would be normal to have some leakage especially because of the spasms I've been having in my other sphincter muscle that is totally out of my control. [ more ]
Jan Dollar Well, you CAN have some temporary incontinence after dilation because of trauma to the sphincters. It all depends on how long the dilation takes and how much the sphincters are stretched. But, it is temporary. Jan [ more ]
Scott F Valo, the sphincter (which is *supposed* to hold in poop) doesn't get dilated, so it keeps working just fine. The stricture is internal. [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
muscle/tissue damage from long term metamucil?
J jeane
TE Marie I use the clear capsules not the hard pill type ones. Like the prescription Imodium, Loperamide 2MG capsules, work better than the OTC Imodium. They get into my system quicker. If it causes a problem then you are right, don't use them. I'm suggesting an alternative to drinking it. I found myself not taking it as often as I should and these were the answer for me. Side note, I love the prescription Loperamide because it allows me to tell how much I need to take because it gets into my system... [ more ]
Scott F For some folks the capsules don't mix well with the poop (depending on things like transit time and consistency). Pay attention to whether you see little pockets of former capsules - that's why I abandoned them. Also: I believe you can get unflavored psyllium husk (maybe Konsyl rather than Metamucil). You could then make it palatable in whatever way works best for you, though it might take a little fussing. [ more ]
jeane Thanks TE Marie, Maybe I will try the capsule route as I feel they put FAR too much sugar in the Metamucil and it really leaves a lousy after taste that stays with you. [ more ]
See all 10 replies...
J-Pouch ForumsGeneral Discussion
Been a while, nice to see you!
Mental KaseMental Kase
Mental Kase Jan, Wonderful that you can still get by with Norco since that is a tough one to stick with on the Opiate ladder. There is also that distinction between the physical 'dependence' and 'addiction' which is a somewhat different issue. I don't subscribe to the idea that if someone happens to feel a bit of euphoria with their pain meds that they should label themselves an 'addict' for it. Euphoria is a documented medical feature of opiates so no need for people to beat themselves up about it. [ more ]
Jan Dollar Best of luck to you. Yes, unfortunately, this is a common tale. With opiates, things are good when they are good, but eventually you need more for the same effect, even if your pain levels remain stable. So, long term, they are more of a curse than a blessing (sort of like prednisone, which can be a wonder drug--short term). I live in fear of similar challenges since I have chronic pain with my arthritis. I really grumbled when my rheumatologist wanted me to step up my Norco because I was... [ more ]
Mental Kase Thanks Scott, Yes, I will need to be open to all alternative options. MK [ more ]
See all 4 replies...
J-Pouch ForumsK-Pouch Korner
More leakage.
EricEric
Edee Hi dpol, Whats a a clamp and then a plug at the end of the catheter? I've got a base plate and having to leave catheter in but it's making my stoma sore as it's not got enough room to cut the right size hole around. Thanks, Rachel [ more ]
dpol Eric, if you decide to leave the tube in, I used a clamp and then a plug at the end of the catheter that I taped in for confidence, so I did not have to attach a bag. I did this for 3 months while I waited to have a procedure. It made having a tube in all the time a little easier to live with. [ more ]
Jasmine 2 Eric, I would put the catheter in and keep it in for 21 days to scar it into place if that's even possible with your problem. It's worth a try... [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Very Watery Stools - Pouchitis or NOT?
J Jpouch8888
Edee Hi Jpouch8888, Did your problems resolved in the end? What caused them? Was it pouchitis or stomach bug? I'm having same problems with k-pouch right now :-( How are things with you now? Thanks, Rachel [ more ]
Jpouch8888 Just overnight I went from extreme watery BMs to very thick stool. The thick (almost constipating) BMs are typical for me after being on Cipro for a few days. My body is confusing the heck outta me. Haha If BMs stay too thick do you think I should take some stool softenrs? Milk of magnesia until I'm off the Cipro to ensure I'm emptying completely? [ more ]
Jpouch8888 It is now day 4 and I still have VERY watery bowel movements. It is also day 3 of Cipro. It is like a huge gush of liquid coming out with each bowel movement. No pain or irritation. Appetite is less than normal. Very slight nasea now. I called the on call doctor and they said come to the ER if it doesn't improve, I get fever, etc. Do not think she had any idea. hmm...this is driving me crazy! If I had cramps, I would think it is pouchitis, but this is just lots of super watery bowel movements. [ more ]
See all 5 replies...
J-Pouch ForumsK-Pouch Korner
K-pouch - partial obstructions?
B Bodoni
skn69 Bodoni, I hope that this is not an obstruction, partial or otherwise...they suck. Just to test the theory, I might try going on a hot fluids diet for 24hrs...hot tea, broth, soup etc...use a heating pad on you abdomen and lower back and try a touch of yoga stretching and see if any of that gives you some relief...not sure if you are sedentary at work or not but I would up my walking too for a bit...maybe a small walk around the office or block every hour...and chart your intake/output... [ more ]
vanessavy I can feel mine in my left ribcage. Never puked and can eat with them. Clears up after a few days for me. I never had spasms though. [ more ]
See all 2 replies...
J-Pouch ForumsPouchitis
VSL3 capsules vs packets?
pouchmonkeypouchmonkey
TE Marie Thanks Scott [ more ]
Scott F It is far from an exact science - I ended up at four because it's the highest dose recommended in the product labeling, and even with that I need to stay on Cipro to manage the pouchitis (fortunately quite effectively). I'll confess that I bumped it from two to four when my insurance company behaved inappropriately about it and stopped filling it by mail. I pay the same copay for a month's supply regardless of the dose, so increasing the dose didn't cost me anything. [ more ]
TE Marie Scott F, how did you arrive at the dose of 4 doses of DS a day? I'm wondering if I should up mine from 1 DS to 2 DS daily. I've been taking antibiotics about 10 - 14 days every 2 months or so. Thanks [ more ]
See all 4 replies...

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