CeeeeCeeeeDuring one jury selection session I was seated in the jury box and because of my position in the box and the layout of the courtroom, my view of the judge was blocked by a huge T.V. monitor. My thoughts of having to listen to his voice but not being able to see him during the length of the trial gave me fuel to convince "them" I was not a good candidate for their jury. It worked. [ more ]
TE MarieI've been selected for jury duty many times and my employers use to get me out of it saying it was the busy time of year, I was a CPA, but that quit working. I wanted to serve. I was told not to worry as no one would want to have me on a jury as they think of CPA's as seeing everything as black or white with no gray areas. They were wrong. I served on a rape case where we found the man guilty. I served on a civil case and found for the defendant. Then I was selected for another rape case -... [ more ]
Kathy AI am so glad to hear that so many are not having issues with having a few drinks. I realize that everyone is different but at least it sounds encouraging. I like a drink of rum but have not had any for over a year; first due to medication that I was taking and then because of high output ostomy with perpetual dehydration and electrolyte and magnesium depletion. Had take-down surgery 5 weeks ago. I am doing very well but hesitant to try any alcohol right now. I plan to wait for at least... [ more ]
phonix2gI was a little nervous a few months ago about drinking. I waited for over a year to try any kind of alcohol. I can tell you I can drink as much if not more than I did before and have absolutely no issues with it. I try and stay away from beer because it makes me feel bloated and I feel it causes a lot of gas the next day. Just take it slow and experiment with different drinks. Just because you had surgery doesn't mean you have to give up the things in life you used to enjoy. If your body can... [ more ]
MurrayI have found my tolerance has gone up after my colectomy I am able to drink more before becoming impaired. but beer does loosen me a bit. [ more ]
dcpropilotCan someone provide a link to purchase convatec orabase (U.K or elsewhere)? I live in the U.S. Thanks! [ more ]
hichikMy friend orders it directly from the UK. I buy mine there when I'm there or my mother brings it for me.... [ more ]
AnushkaWell, seems covatec sells this product in the uk but not in the US, at least according to the product search functions on their respective country websites. So will have to get on the phone with them but worth the effort. I'll also investigate whether the Colgate version is the same/similar product in consumer/OTC format. [ more ]
AnushkaI had a partial obstruction that didn't show up on imaging. I found it somewhat irritating that my doctor suggested food poisoning or a virus. It was nothing of the sort. They key for me in recovering was to maintain a liquid diet for a good week or so, starting with true liquids then full liquids (yogurt, puréed foods). I made the mistake after being discharged from the hospital of eating regular foods 2 days later at home. I was writhing in pain again that night and throwing up, debating... [ more ]
Jan DollarOften, if there is a partial obstruction, there will be nothing visible on imaging. It certainly is possible that there was a "perfect storm" of food poisoning with some accompanying partial obstruction; making this worse than either thing on its own. Glad you are feeling better and this did not escalate into a surgical emergency. Jan [ more ]
TJBAll good news, no obstruction and quite honestly no real answers. Did a CT scan that came up negative for obstructions and my bloodwork was all good. Pretty much the doc told me what my kids doc seems to always tell us when they can't find anything. It could be something viral (and / or some latent food poisoning). Told me to continue the antibiotics and they gave me some zofran for nausea and said to follow up with my GI doc so they can run further tests when I get home. I am glad I went in... [ more ]
LesandiegoPrayers and best wishes to a successful (and quick) recovery! [ more ]
Jan DollarYay! This should definitely fix your problems related to the loop ileo. Let's hope the downstream issues get the needed rest to heal! Jan [ more ]
AllyKatHa, I just ate this week a 3 lb bag of M and M's from Costco, good for my depression and I gained 2 lbs. I have had a great week with my pouch. It must like sugar! I ditched the augmentum cause of the nasty yeast infection and went back on xifacan. Getting a MRI on Sunday and a endo/pouch scope on Thurs. I actually like the Paleo diet and will definitely go back to something after the tests the week. Interesting that this Foodmaps allows sugar and Paleo/SCD does not. [ more ]
Rebe0505alleycat i`m trying to get myself to just eat more meals of the scd. diet foods.. difficult getting into that sometimes to gain a few more pds back..i figure it was the going to bathroom so much in last few months that did my weight issues no good.. i too am on antibiotics..experimenting(with shens approval of my plan) to see if i can between diet and alternating one week on antibiotics one week off feel as good as i do this past few days..(hating thought i will be through a week shortly and... [ more ]
AllyKatLiz, interesting about this diet. Thanks do u use this with good results? [ more ]
MysticobraWooden mallet. Hahaha. I have the problem too. Valium work well. [ more ]
boy's momMy son is often up one to times a night with formed leaks. He does not have any other symptoms of pouchitis. He does not feel badly, he has no inflammation and his stools are not liquid. Those three things were the signs that he had pouchitis. (He is also on rifaximin since March to control the pouchitis.) A month ago he had a week of no leaks and the only thing different was he was exercising a little more than he is currently. I don't know if that somehow played a role or not. This goes... [ more ]
Jan DollarYes, any chronic inflammation can cause an elevated neutraphyl count. And, yes, perianal disease is another indication this might be Crohn's. You have to remember that pouchitis can be caused by several different things, but mostly boils down to IBD response (pouchitis seldom occurs in those without IBD). So, just like colitis, any particular treatment may or may not be effective. You've already noticed improvement with the prednisone, but you can't stay on it long term. That is the reason... [ more ]
kereenThanks Jan, If there is a chance it's chronic pouchitis will the prednisone and humira help or hurt it? Would chronic pouchitis make my neutrophil count high as well? I've been being treated for chronic fissures, he didn't say but I'm wondering if that's also making him lean toward the crohn's dx? [ more ]
Jan DollarWhile granulomas are diagnostic for Crohn's, they are not found very often. In those cases, the diagnosis is based on which way the scales are tipped, with UC on one side and Crohn's on the other. There is newer thinking that IBD is a spectrum of diseases, not just UC and CD. Realistically, it does not really matter (once you have a j-pouch), as you pretty much go through the same treatment protocols. It mostly is important if you are considering initial j-pouch surgery. If it were me, I... [ more ]
AllyKatOh yuk Scott! Sometimes I hate being a girl! [ more ]
Scott FAllyKat, time to make an appointment with your gyn, I think. [ more ]
AllyKatYes pretty much all antibiotics cause this for me and I think it's even in my butt this time as well. Augmentum is a nasty one. Difucan is doing nothing. I switched back to xifacan and will get some monostat ASAP. Monostat always works but that is when I have finished the course. I never had this on a continual antibiotic basis before? Oh gosh! what am I going to do if I need to be on continual antibiotics? Rebe, you will know if u have a yeast infection! trust me. [ more ]
Jan DollarRachel, I agree with you. When you are close to the subject it is important to use the right descriptive language and it makes all the difference in the world. But I think that the term addict and addiction were used for decades to describe both dependence and abuse. It has only been in the last decade or so that I noticed a trend to really separate the two. I wonder if it was not even understood to be two distinct issues a generation ago. I applaud a doctor that takes the time to try to... [ more ]
rachelravenAgain, I work with an addiction specialist... High doses of opiates creates physical *dependence.*. It is incorrect to label physical dependence as *addiction." Addiction, as he describes it, is inappropriate use of the med. Stealing to get it, chewing on your Fentanyl patch to seek that high, starting to take your prescribed med in inappropriate ways (earlier than due, more than prescribed). That does not mean, that at big doses, you don't need monitoring to wean off. Your doctor labeling... [ more ]
phonix2gAn addiction to pain meds most of the time is not the patients fault it is brought on due to a medical necessity. It's inevitable that you will become addicted to the medication if you are taking it for a long period of time. My surgeon explained this to me after my surgery that I was going to need this medication for a while and he was going to taper me down slowly to avoid any type of withdrawal. He put it in the terms that I was a "medical addict". He gave me a piece of mind by saying to... [ more ]
Jan DollarThe type of pump is an intrathecal pump. http://www.mayfieldclinic.com/...UMP.htm#.U76n1WK9KSM Usually, the gut only shuts down with abdominal surgery, but some people have that response to any general aneshtetic. Jan [ more ]
GumnutThankyou all soooo very much for your replies. WE have had several phone conversations with doctors since visiting our own local doctor early this morning. Your messages are greatly appreciated believe me - yes Laura, we have tried acupuncture but even the acupuncturist said he can do no more, Alli, we haven't heard of that drug but will most certainly ask his Pain Management Specialist. Dog, yes he tried Tramadol but it had it's own side effects and no Jan, a pump hasn't been mentioned but... [ more ]
Jan DollarSounds like a pretty miserable existence. I would inquire about a spinal pain pump. This delivers tiny amounts of narcotic to the spine, with little to no systemic effects. The pump is implanted under the skin and is refilled by injection periodically. He would still have to go through detox while coming off of the systemic opiates, but a pain management specialist can oversee it all. Jan [ more ]
DogI was hyper sensitive to any movement in my pouch after my takedown. Once my brain got used to the new sensations and movements, well, I hardly even notice anymore. Although gas pains still get my attention. DAMN YOU BROCCOLI! [ more ]
slightly_creativeThank you for your feedback Pluot. It's appreciated. Every so often I can feel movement in my pouch (wondering if it's common to have this amount of movement ), or what I'm assuming is my pouch as if I need to empty, I was told to hold it for a little bit in attempts to stretch the pouch. But anyways, I'm home now, glad as ever but a little uneasy to sleep & wake up to another mess lol I stopped at the medical supply store and grabbed a bed liner and some underwear. We shall see how it... [ more ]
PluotIt's normal. My surgeon chose to keep a tube in my pouch (up my butt) for five days after surgery so I wouldn't have accidents or have to empty into the toilet, and a TON of blood and nastiness came out of it. It had slowed down a lot by the time I had the tube removed and left the hospital, but I passed a little mucus, sometimes with a little blood, at least once a day until takedown. [ more ]
liz11in addition to numerous lengthy hot sitz baths each day.. spray the area with warm water via a shower sprayer. yup you read it right. My CC surgeon had me doing that. just another thing to help it keep open and draining. [ more ]
rachelraven50% or more end up with a fistula like I have. PM me if you have questions... I've had a seton drain in for over a year. This has helped a lot, because the "full, burst" cycle doesn't happen, and the drain allows constant drainage. Is it comfortable? Not always, but it's tolerable MOST of the time. [ more ]
Jan DollarHot sitz baths are what is needed. Once you understand that abscesses must heal from the inside out, taking weeks won't seem so crazy. You do NOT want this to heal over prematurely. That just leads to the abscess reforming, causing more pain, and bursting. This is a repeating cycle. This is why it often needs to be lanced, so there is a larger drainage opening. Antibiotics are not very helpful, as the body walls off the infection from the bloodstream. This protects you from sepsis, but also... [ more ]
MysticobraI got a laugh out of that myself. Permission denied! Haha. [ more ]
Scott FThank you for putting it this way, Jaypea. I got a good laugh. Nothing funny about the event itself, of course. [ more ]
rachelravenI have no issue with any berry, at all. Strawberries are my best fruit. Because I did a FODMAP elimination, I know some fruits that make me more uncomfortable. Apples, pears, those bother me, make me puffy. A lot of regular people will get the skitters eating a whole pile of cherries! Or any fruit, in excess, for that matter. Jan, spinach is one of my best veggies! As is broccoli! Which everyone says is a gas producer; I'm very little bothered by it when cooked. Zucchini is great, too. And I... [ more ]
PluotHi guys... thank you for all the notes... so I've been taking it very easy, and am still not sure if it's really pain or not, but I'm at the point where I feel like wondering if I have a hernia or not is having an unacceptable effect on my quality of life. So here is my question: what kind of doctor should I go to? I've moved away from the city where I had my surgery, and I was "released" from my surgeon's care right after takedown anyway. Should I go see a GI? Or make an appointment with a... [ more ]
liz11liz... could be nerve damage. go to a dermy. they may be able to help. you would know it if it was real pain.. trust me! [ more ]
wsh6745Good job Liz. I'm only 12 weeks from takedown so surgeon says no weights yet. I get weird feelings around my old stoma sight too. A couple of times it almost felt like there was a bag sitting there when I knew, of course, there wasn't. I have wondered several times if that was a normal part if healing but I never of thought of posting the question so thank you, this was very helpful. Keep up the good work! [ more ]
Jan DollarUsually it is seen on CT or MRI, but there are a number of members here who had pelvic abscesses that defied detection by any imaging techniques. If one is there, but can't be detected, it will cause chronic problems until exploratory surgery reveals it. Jan [ more ]
cassiecassMorning Dawn I agree with you on being at the mercy of doctors.I have gotten more answwers and guidnace from this forum than from any MD I see .I wonder some times what are they taught , what they read what they truly know. Stay well Cassiecass [ more ]
dawn58As a patient I feel like I am at the mercy of the doctors. I think anywhere from 3-6 months. [ more ]
cassiecassThank you for your response.What as a patient do you feel is long enough to heal on it's own. Cassiecass [ more ]
PluotI agree, don't wait. I had untreated pouchitis for a month before finding out it was C. diff, and was back to normal within a few days of starting vancomycin. It's an easy test with a HUGE upside. [ more ]
TE MarieYou can get tested for c-diff by your regular doctor. All you need is a stool test. It needs to be at least 14 days after taking any antibiotics or it with give you a false negative. I wouldn't wait until August as it's an easy test. I've had c-diff several times since takedown. My GI discovered it the first time he a pouchoscope a year after takedwn, as he also collected a stool sample. I had cuffitis and c-diff at the same time. I'd been suffering for months thinking the first year was... [ more ]
BebeksporHmmmm could it still be c diff if I have been having the problems since takedown really? I'll keep it in mind. I get scoped (yay) at the beginning of August so I can ask. Katie [ more ]
Former MemberYeah, I appear to be doing very well. As for pain, only the sore skin around my Stoma, otherwise none. I was feeling totally exhausted when standing up, getting out of bed or attempting to do the simplest of duties/chores etc, however that seems to have passed now. [ more ]
Shainysounds like you are doing well strange. do you get any pain/aches around your butt? i was getting that for quite a few weeks but its calmed down now [ more ]
Former MemberUpdate! update ! Had my J pouch created at St Marks, London UK; currently recoverying and doing well. Experiencing some soreness to the skin around my loop ileostomy, but thats improved over last couple of days. My worries in regard to ED was unnecessary and all is working well. In fact, without sharing too much information, I was aware of nocturnal movement, so to speak, within a few days after surgery. [ more ]
AyrishGrlThanks for the info guys! Jan - I definitely got a much better course of the IV antibiotics this time. 4 full bags vs barely 1.5. The nurse that did my IV worked a miracle and using an ultrasound found a good vein and then strapped my arm to a soft board which kept me from moving the arm and causing the IV to infiltrate. This equaled an IV that lasted the full 3 days (a previously unheard of occurrence for me)! I have another 6 days on Bactrim and I am going to talk to my GP about how to... [ more ]
Jan DollarPlaquenil is classified as a DMARD (disease modifying anti rheumatic drug), although it was first used an an anti-malarial. It has immune modulating properties, but it is not immune suppressing like steroids or biologics. It is used to reduce pain and swelling, but also helps slow or stall the progress of rheumatic disease (disease modifying). It is in the same category as sulfasalazine. I've done some searching, but have not seen anything indicating immune suppression in pathways preventing... [ more ]
Scott FI can't find anything about Plaquenil causing (or making one more prone to) infections of any sort; perhaps someone else will find a connection. Remember that MRSA is only special because antibiotics are ineffective against it; it otherwise behaves exactly like other *untreated* staph infections. No matter what medicine you are taking you can't get MRSA unless you are exposed to it somewhere in your environment. Are there places you go that may be exposing you to MRSA (e.g. a contaminated... [ more ]
IkhI am always hungry and consider this positive. I limit my carbohydrate income (I actually consider that harmful and useless) and eat lots of bananas, apples, fats for my energies (high quality butter and extra-virgin olive oil) and meats/fish of every type. [ more ]
BreezieI don't think it is common for j-pouchers to have absorption/malabsorption issues, since that is primarily done in the small intestine, outside of reabsorbing water in the large intestine. Are you having specific absorption issues? [ more ]
Former MemberAlthough I'm currently recovering from J pouch creation surgery. Just prior to my colon removal I was admitted into hospital due to a severe flare up of UC. Within 3 yrs of leaving hospital and making a full recovery, I never had any issues gaining weight Feeling hungry all the time can actually be a sign of dehydration. [ more ]
IkhYou could be lucky enough to not to have to seek a bathroom soon after the surgery, it happened to me and many people. [ more ]
ThompsonI appreciate the messages guys, thank you. I'm wondering how some of you were feeling after 2/4 weeks was you ok to go out? How long would you be able to go without needing the bathroom at around 2/4 weeks post op ? Thanks [ more ]
KastuhlmI had mine done in a 3 step procedure. My first surgery done October 30, 2013, next January 28 and my take down April 25th this year. So I have had my working j-pouch for just about 2 1/2 months. I have not had any complications from the surgery, thankfully. My surgeon said I could return to school in August and right now I have no restrictions with exercise or working. I think it varies by every person and how they are doing. I use the bathroom about 8 times a day without any medications. I... [ more ]
JHendrixI am about 3 months out and experienced stinging at about the same time as you. I thought it was odd as it hadn't been an issue prior. The surgeon told me it was normal and the stitches take a long time. However, I did not have any drainage so I can't comment on that. I would likely ask the surgeon. [ more ]
ELHI had violent reaction to Keflex. This was before my j-pouch. I never been allergic to anything before. When I asked about it, the doctor just said "old age". [ more ]
BebeksporI would also say a couple weeks for getting my appetite back. I was amazed at how I would get full after eating half a mini bagel or a few bites of mashed potatoes! Even now, I still can't eat like I used to, I get full much quicker. Katie [ more ]
KastuhlmCongrats on getting your jpouch!!! I have had mine for just over 2 months. It took me at least two weeks to get my full appetite back, but everyday it got better. I ate pretty blah meals at first, plain chicken, potatoes, crackers... As time went on I would only try one food at a time. I find that I can eat mostly everything but it's different for everyone. Be careful at first because you are just getting out of surgery too [ more ]
pouchingtonit was just done today so i havent heard anything yet. it most definitely was not a thick barium. jeepers the fun never ends... [ more ]
Jan DollarWhat instrument they used to put the barium in with matters less than how thick it was. If you expelled a liquid, not a thick paste, then it was not correct. The films seemed OK, taking them before during and after evacuation. They did not have to use the same terminology with you for them to be taking films at the appropriate moments. The oral contrast might have shown defects outside of the pouch. Also, just because you were able to pass the contrast with ease, it does not mean that pelvic... [ more ]
pouchingtonalso read they should put the barium paste in with a caulk gun because of the thickness and they used a syringe... http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3228983/ [ more ]
MurrayIntestinal hands down. Barfing after my Achilles surgery didn't cause me any pain or pulled staples. [ more ]
jeffpSorry for the late reply everyone. I thought I would get notified if there was a new post, but I guess I didn't turn that on. I just started walking on my heel with a boot last week, which was exactly 2 weeks out. I had quit taking pain meds a few days before that, but took some more after I started hobbling because it hurt and I don't like to be in pain! (I can't really take much ibuprofen.) My surgery involved cutting the bone as well (1st metatarsal I think), and the bone was screwed. Ha... [ more ]
ksrI had my toe surgery on 6/24. The first few days was hard but the pain was nothing compared to the j-pouch surgery or having a massive obstruction. The past two days, I have only needed to take tylenol for pain. [ more ]
PoucherInTOA big water bottle or something similar with a lid - I kept hitting my cup with my hand and spilling it all over my bedside table. If you are bringing in a container from home, find out how much liquid it holds so that you can keep track of how much you drink. Ear plugs, a sleep mask for your eyes and your own pillow or pillow case if you can [ more ]
AllyKatToto dual flush, comfort height, love my toilet! [ more ]
Jan DollarFor me, the unexpected bonus was how quiet it was. Our old toilets were noisy to flush and loud while refilling. They do not have a standard flush or fill valves. The flush valve is twice the diameter that standard toilets have. It does not have a power "turbo" boost or anything like that. Just a gravity flush. Jan [ more ]
CTBarristerThat sounds pretty good Jan. I have to think about replacing my two toilets. They usually require two flushes to send everything down, and it is irritating. They are 12 years old and work, but I don't really know what the shelf life is on these things. They were installed by the builder, who essentially used the cheapest materials he could find from what I have learned through the years. I have had to slowly replace all the cheap original materials with better materials though the years. [ more ]
Jan DollarDoesn't sound great, but if your surgeon is experienced, you just have trust that he chose the lesser of evils. Fingers crossed that this turns out well for you. Time will tell. Jan [ more ]
CeeeeCeeeeThis always happened to me prior to my J-pouch surgeries.....especially when I approached one particular intersection with an especially long light. Since having my surgeries.....over 10 years ago, I no longer have a problem in my car. [ more ]
techwrenchFor a couple of years after the pouch surgery,I drove trucks for a living and never had a problem. I currently have bad pouchitis,and when a gas bubble gets in the pouch,it causes very painful spasms when seated.Reclining the seat slightly helps a little.The only way to remedy the problem is to find a restroom.Sitting in stopped traffic for an unplanned event is my worst fear ! [ more ]
MysticobraMine does too but I think it's the anticipation or un felt stress of leaving the house and toilet. Another thing that upsets mine is mowing the lawn on a riding mower. All the bouncing around makes mine hurt to no end...well for the rest of the day anyways. I drive a lift truck at work and that aggravate it too. No shocks on those things so I have to be careful now. It does get painful after bouncing around. [ more ]
phonix2gIf you are not eating right you will be exhausted. If you are going to the bathroom that much and not putting the right amount of fluid or nutrition back in your body then you will be exhausted. If you aren't getting the right amount of sleep then you will be exhausted. If you've lost a lot of weight then you will be exhausted. If you are experiencing opiate withdrawals then you will be exhausted. Yes you can start to experience opiate withdrawals while you are still taking them I know from... [ more ]
skn69Scott, With or without the pouch, the disease etc you are going to get older (I hope!) and have to deal with a whole new set of health issues like, well...everything! It is natural to resist change but it is coming whether you like it or not so the best rule for me is to expect that there is no normal and be pleasantly surprised if you have a good day (food diaries actually do help but you have to add in the times that you eat the foods, what you ate, drank or did while eating them (like how... [ more ]
MysticobraI know being older it takes longer to heal but another thing about being older is being set in your ways and being stubborn in changing your ways. So sometimes us older folks have to learn the hard way. [ more ]
SavannahHi Sharon. Thanks for taking the time to respond. I am glad you are in the US surrounded by old family and friends with love, support, and hugs galore. I DO have lots of support from family(despite distance) and a large community of solid, reliable, sensitive, caring and loving friends. These relationships are a godsend and I always worry that they will tire of my health problems but they don't seem to. I try my best, especially when feeling well, to give back generously in all the ways I... [ more ]
skn69Hi Savannah, I am sittin g here on the North American continent surrounded by friends and family (this is the annual pilgrimage home)and funny enough, a lot of my pain has dissipated...being distracted, feeling loved and needed, having those people who know you so well and can make you laugh...they all go a long way to comfort us and make some of that awful pain stop screaming so loudly in our bodies. Hubby is at 'home' in France and I am at 'home' where I belong...in the arms of those who... [ more ]
SavannahOh yeah.......I forgot another good way of coping with everything. As a young widow and empty nester, I believe more and more in the comfort of my furry friends. I belong to the church of cats and dogs and it is so helpful!! Just thought I'd say ...... [ more ]
KB82Thanks, Wendy. I spoke with my stoma nurse and she said she'll take a look at the placement for me when I come in the day of the surgery. Hopefully she lowers it because it would definitely be hindering movement where it is now. I know it's only supposed to be for 8 weeks or so but you never know. Many stories of people having to go longer for a myriad of reasons! [ more ]
wsh6745When they marked my original spot for the temp stoma is was really high too. I didn't like that because I wanted to make sure it didn't stick out of my jeans, shorts or high-wasted bikini. I actually brought clothes with to try on and test with the stoma nurse. We ended up lowering the stoma position quite a bit. It made it just a little more uncomfortable with making room for the bag because it would kind go hang down the beginning of my pant leg but it was only for 10 weeks so manageable. [ more ]
KB82Aka knklhead, thanks for the info, that helps. I was curious if the hospital flange is much bigger than normal. I have a small torso, and the placement of the stoma they marked causes the flange to actually dig into my ribs when I bend over. This is why I'm trying to find out how they calculate their measurement. Thanks. [ more ]
Scott FSome additional ideas: any particular antibiotic can stop working for you. I used Cipro very successfully for a few years, but it ran out of gas (no pun intended) not too long ago (nighttime leakage, etc.). At that time I was able to get things back on track with doxycycline. A probiotic like VSL #3 DS may also help (at least it helps me). Some folks see benefit with a low carbohydrate diet. Some people (like me) do better with Lomotil than loperamide. Good luck! [ more ]
Jan DollarI would think that it would be an early symptom. Nocturnal leakage post op is pretty common. The sphincters normally relax some during sleep to allow for expelling gas. There can be temporary nerve trauma/damage that is subtle, and this is why it is only appparent during sleep. Weak sphincters could even be present before surgery, but not tested with chronic liquid stool. This is why some people are helped by bulking agents. Mark, since you are intolerant of psyllium, you may want to try... [ more ]
jeaneJan, Would permanent nerve damage show up early after the operation? I am more inclined to think the leakage is from pouchitis. In my case I had no issues like this until my last biopsy that showed true damage to my tissue versus superficial inflammation like I have had pretty much since the takedown three years ago. I keep wondering if I should be more concerned about this than I am as other than the leakage issue my pouch is behaving the best it has in three years the last few months. I... [ more ]
L.DLI know that they do take out of town people, the question is the price! As for it being a business I totally agree with you. [ more ]
techwrenchHave you checked to see if C.C. accepts patients with out insurance ? When I used to go to Mayo,they would only take insured patients. My theory on why the ileostomy are pushed,is it's a business.The facility/provider can't perform the j pouch surgery, so they push ileostomy'to keep the business in house.At least that's how I viewed it. [ more ]
L.DLThank you very much for your suggestions. I have been wanting so badly to go that route,because of so much that is happened here, with not much results and well to be honest besides the fact that our medical system here sucks! Sorry with all do respect, I changed from one hospital to another and they really don't seem to no more then the other. To be honest they don't really specialize in j pouches or at least with complicated cases! But are to dam proud to refer you to someone who is. With... [ more ]
ArcherThanks, I'll give an update on my weight and how everything's going in 7 weeks. Archer [ more ]
Jan DollarDislike is reason enough not to drink Ensure. You want to enhance your appetite, not kill it! Good luck in school! Try not to obsess too much about your weight and size, but focus on learning and having fun. Jan [ more ]
SweethoneyI feel this. I already had a tipped uterus. also when its around that time of the month I have such bad cramps its breathtakingly horrible. [ more ]
Jan DollarAdhesions would not be visible from the scope. They would be outside the pouch. I'd see the GYN and get a pelvic exam to see if your uterus is attached to your pouch, or in the wrong position. My uterus is retroverted, but does not prevent my pouch from filling, so I'd think something else would be going on. Jan [ more ]
wsh6745I haven't talked to gyn yet. He didn't think it was tipped just that because of my anatomy and the size of the uterus that there just isn't room for the pouch to expand. Does this seem logical? I started thinking more about it and women have had full pregnancies without issues so how can "room" be the issue? If there's room for a baby, there should be room for my pouch to expand, shouldn't there? He didn't notice any adhesions with the scope. How would we know if there were any? I will see... [ more ]
Jan DollarI had to go back an review what I had said in my other posts. I did not say that the Remicade wasn't working, but that it may not be working for you. It all depends on what sort of arthritis you have. Ideally, the biologic you are on should take care of both your IBD and your arthritis. Of course, if your arthritis is not the inflammatory type (such as osteo), then biologics would not be the treatment. But, from what you describe, you definitely have something going on. Maybe it is from... [ more ]
Rebe0505you are not kidding about the stinging..one night i thought i would try using it try to empty out it was a disaster..soon as i put it in it was stinging like crazy and before i was done i had to evacuate..messy situation.. [ more ]
techwrenchI have used enemas for years to help wash out my j pouch. What works for me is to remove the little check valve flapper from the top, and dump the saline solution out.The saline water kinda stings. Refill with warm tap water. I reuse the bottle over and over, making sure it's clean each time. When the plastic cracks, and the bottle starts leaking, it's time for a new bottle. I even keep a bottle wrapped in a non transparent bag at work for treating sudden irritation, when it happens. That... [ more ]
wsh6745Oh my gosh Sharon. This is all awful news. You have already been through enough. I hope your hubby heals quickly and you are able to get some rest too. I hope you have a great appointment and safe trip. Take care, Wendy [ more ]
wsh6745Good luck with your procedures. I hope all goes well and you no longer have any problems. Take care and post updates when you can, Wendy [ more ]
LambiepieGood luck, GinLyn. I can tell you that the hospital where I had all three surgeries is considered the "Mecca" for these procedures and aftercare in NYC. The hospital itself was ugly, the views were depressing and the nursing care was, shall I say, "no nonsense." Yet I knew it was the right place for me to be and they'd be able to tackle anything that came up during my stay. [ more ]
TE MarieBest wishes for you surgery! It sounds refreshing that the hospital doesn't pour their profits all into redecorating the facilities! It bothers me when I walk into a new fancy facility or newly decorated office. I'm thinking, "this is why our medical costs are rising uncontrollably!" [ more ]
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.
Forum moderator and advisor Jan Dollar R.N.
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