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J-Pouch ForumsGeneral Discussion
New to this process
BreannBreann
TE Marie Hi Breann, It might help for you to go to an Ostomy support group. Your hospital might have one. Hopefully you had an ostomy nurse an she/he can direct you to where and when a group meets. It's a lot to deal with in a few months. You don't have to rush into decisions and can stay at your current stage as long as you want to unless there is some kind of rectal problem. Welcome to the site! [ more ]
Cody44 Hey Breann, You sound a lot like I was. I was 17 when I had my first surgery due to UC. I had my colon removed and j-pouch installed but had the illeostomy for 9 months. I will not lie to you, I hated it, like people say it's trial and error on food, but I never found anything that was great for me. Then I had my next surgery and started using my J-Pouch, and, at first, I didn't like it either, but after a few weeks of my body getting use to it, it got better, and better, and better, and... [ more ]
Becky Boo Breann, First of all, good for you for reaching out -- you'll find lots & lots of help here, and will learn quite a bit about what to expect post-takedown. I'd caution you about one thing: many who post here, post because they are having issues and need help. Try not to let that scare you. Many of us j-pouchers are out there living healthy, happy lives with our j-pouches. You do have a long road ahead of you, keep reaching out for support as you need it. Also, if you haven't found it... [ more ]
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J-Pouch ForumsGeneral Discussion
when do you have night incontinence?
fqfq
lovedby2 I'm 4 months post op from my takedown surgery. Only time I had full on blow outs was when I was admitted back into the hospital for severe stomach distended. I think because of the IV, medicationst, and sleep meds they gave me... Plus when you're hooked up to an IV, the process of getting up, unplugging it, and walking, not running, to the bathroom takes too long. At home, for the first month after being released, I wore a thin, night maxi pad as well... Also placing it further back in the... [ more ]
bemeyer Unfortunately, I suffer from overnight incontinence as well. I had gone 5 years since my having j-pouch without suffering from this problem. My scope indicated a little pouchitus, for which I've been taking both Cipro as well as Flaygl but haven't shown much improvement. [ more ]
JeffDC They occur for me maybe once a month or two, and usually very late-maybe 5:00 AM. It will happen when I have a really bad night and sleep exhaustedly through the "you better get to the bathroom now-signals. [ more ]
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J-Pouch ForumsGeneral Discussion
just a little thing i wanted to share
CF Charlie Fuller
JeffDC There is no wide range of emotions that we go through, or is there? hehe I prefer any beach to any hospital room. [ more ]
Charlie Fuller mgiamartino - that may be the best compliment yet! glad you enjoyed it. [ more ]
mgiamartino thank you. such a journey we've all had--patients and caregivers. your words made me smile, start to choke up a bit and, best of all, made me want to write again. [ more ]
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J-Pouch ForumsGeneral Discussion
pelvic floor therapy
L liz11
Very-Unique Liz11, I am going to a physiotherapist for pelvic floor therapy next week. I have had spasms with my pouch right from day 1, which was in 1998. I will post again after my first consultation. [ more ]
hurting Liz11 I had pelvic floor therapy 5 times since my orginal surgery 6 years ago. It is like going to the gyne every time. Feel free to PM me and I will go into more detail. Elaine- hurting [ more ]
liz11 seriously... has no one on this site had this done? My doc led me to believe it can be acommon problem after lots of surgeries. Would really like some input from someone who has gone through this. Also, jan, thx for the link. Can you explain how this would affect wound healing? Thanks so much. [ more ]
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J-Pouch ForumsGeneral Discussion
Hair Loss
A Av8erchic
debdaily12 I too lost hair after each of my 3 surgeries. Really freaked me out after the first one when I came back with fists full of hair while washing it! I thought for sure I would be bald by the last one, but I wasn't. It's been 6 months since the last one and my hair is growing back in nicely. I know it helps to know your not alone!! [ more ]
cassiecass It will grow back in time..Mine did. Discuss with a hair dresser what not to use cassiecass [ more ]
Av8erchic Thank you all for the responses! That makes me feel better about the situation to know I'm just not losing my hair for no reason at the ripe old age of 29...I will try some of the things that were suggested and see if they help. I'm not vain by any means, but I hate thinking people can see the little areas on my head that are thin on hair! [ more ]
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J-Pouch ForumsGeneral Discussion
Tired all the time - watery stools
R Rosco79
Jan Dollar The problem with starting two different treatments at the same time is that if there is improvement, you can't be sure which treatment was successful. Vitamin D is cheap and easy to provide, and it is fairly reasonable that treating it might improve fatigue and pain levels. VSL#3 is very expensive, and could even cause new symptoms (excessive gas in particular). So, unless you have a good idea it would help, it makes sense to me to wait. If there really is a bacterial issue that was... [ more ]
Kia Yeah, Rosco, that doesn't sound right at all. I am new to this, but from what I am learning, it makes no sense to me that he wouldn't have you take the VSL#3/wait to see what D does. Jan and others here are more the experts, so perhaps they will chime in soon. [ more ]
Rosco79 Hi Kia, No I thought the same and asked him and he said that he wants to see how I am after my course of vitamin D as he feels that this will do the trick on its own. I'm not so confident. I may just start taking it anyway as he said he will ask my doctor to prescribe VSL3 and vitamin D in the same letter. [ more ]
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J-Pouch ForumsGeneral Discussion
Recovering from J pouch surgery while caring for kids
L Laciep
lovedby2 Yes mine was laparoscopic. All three. It is much easier, faster healing, I hear. But it is the same for both as far as knocking the wind and strength out of you. I would get very winded easily, for example, just getting out of bed and walking down the hallway to the kitchen. It gets better after each surgery, even if it seems like it never will. Try to keep your faith and patience. Heidi [ more ]
Twinstar I had mine laparoscopically- the biggest incision was right through my c-section incision. But the recovery was much, much harder than from delivering babies. Not even comparable! Speaking of babies, I found that a nursing pillow was a great way to hold them on my lap and protect my abdomen and ileostomy. Mine is a big twin pillow with a strap on it so it stays put. My husband also works from a home office so towards the end of my recovery if I did have time alone with the girls he was able... [ more ]
Laciep Heidi, I am also having mine done in 3 steps. Did you by chance have yours done laparoscopically? Does anyone know how much easier, if at all, recovery is versus an open surgery? I hear recovery is a bit better, is that true? Thanks again for all the advice everyone. This is really helpful. [ more ]
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J-Pouch ForumsGeneral Discussion
Back to Cleveland
Uc-DanielleUc-Danielle
Uc-Danielle Thank you! I hope I get some answers and some relief. And hopefully I will see dr remzi [ more ]
Jan Dollar You may have a perfect pouch, but those setons can be a real bugger from what I have been told. Since you have experience with these things, I think you can trust your instincts on what is normal and what is not. Good luck! Jan [ more ]
Uc-Danielle No I wasn't told to. My pouch is perfect quote from dr. Shen but why am I in pain and blood? I just hope I get answers. And Vickie is caring not accusing [ more ]
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J-Pouch ForumsGeneral Discussion
Humira
ManchesterManchester
JJR Mine has always been delivered in an insulated container with ice packs around it, so assuming yours was delivered the same way, I would think an extra 5 hours should be fine. Deliveries get delayed, so I'm sure they account for that at least a little when packaging it. Calling nurse advice at Humira as Jan mentioned is probably the safest thing to do though. [ more ]
Manchester The temp here at the moment is 4C and in the house it will have been about 19C so not too hot and by god there certainly isn't any sun around here. [ more ]
Jan Dollar How warm did they get? I would think it should be OK if they weren't exposed to heat or sunlight. You may want to call the nurse advice at Humira to make sure. I've seen reports that say it is OK at room temperature up to 24hours. Hopefully, this is a learning experience? My health plan doesn't even allow mail order for biologics. I have to pick mine up monthly at the pharmacy. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Incisional hernia repair
T tampav
tampav Kathy, I had the dry heaves on fri night and sat. Hadn't really been able to eat anything . I did have a bm this morning at around 7 am, and that was a relief. I stopped pain meds now because I think they were causing most of the nausea, and the pain is bearable. Drinking pedialyte and water. Had a bowl of cereal. Think I'm turning the corner (fingers crossed) Thank you very much [ more ]
kathy smith I wonder if you could be experiencing ileus. If you haven't had a bowel movement since Thursday (or Wednesday), it may be time to give the doc a call. Yes, it's a matter of time before things start working again, but I think you've passed that goal post. I know you're taking zofran, but are you throwing up? If so, you really should get to the ER. I hope this resolves very soon! kathy [ more ]
tampav Thanks Scott will try that. [ more ]
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J-Pouch ForumsGeneral Discussion
Weight Loss HELP needed
R russell3
JillM Travel can be a real killer for weight management and activity. Have you tried the travel weights or yoga products? Do you have a smart phone or ipad you can download a short yoga routine to? 20 minutes can make a big difference in getting going. Gentle yoga might help stretch things and relieve some aches too. I like Rodney Yee for beginner yoga that is easy to do but effective - its not the celebrity hot yoga that would kill a person just starting! Also, you don't say how old your son is,... [ more ]
Scott F The "magic" for me was adding physical activity outside the house (away from the kitchen!). It also helped the a couple of times a week I had to eat a light, early dinner so I wouldn't have a full stomach when I started. My daughter lured me into martial arts. It's not for everyone, but I lost 40 pounds that I'd been stuck with for over ten years. I was getting some sort of exercise six days a week (most weeks), and trying to eat mindfully (e.g. fruit for a snack). When my activity level... [ more ]
skn69 Russell, First off, so sorry that it is has gotten out of control...it is very hard to put the worms back into the can once you have opened it...harder still when you are battling so much stuff...But it has got to be done whether you like it or not...it is not your health but that of your child that is in play here...and his image of his mom...he needs a role model and you are it. I agree with all of the others here, no regime is going to work if you stay sitting on your sofa. You need to... [ more ]
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J-Pouch ForumsGeneral Discussion
How to increase awareness?
K Kia
cassiecass KIA Write to the Joint Commission .Hospitals are reviewed on everything.Write your story.THEY LISTEN.without their approval Hospitals do not get their certifcations to run their business.The Joint Commission approval means they are given a GOLD STAR. Also in NYS you can write the Dept of Hospitals , The hospital you were in can be revisited and their policy on discharge information can and may have to be changed.They can be fined. Remember we in trust our lives to them.We should be told it... [ more ]
skn69 Spooky, that reminds me of the k pouch pamphlet that had someone water skiing, diving into a pool and ski diving or some such (why does one need to show ski diving to a person about to have their colon yanked out?) Sharon [ more ]
Spooky My surgeon gave me a fairly comprehensive booklet about the j-pouch, which, although brief, did provide details about the common complications, diet, etc. Of course, even when details are specifically spelled out, it's hard to really relate to the whole experience from a booklet, so he also put me in touch with another j-pouch patient who was willing to call me and talk about her typical days. That was quite helpful and did ease my mind, because it actually gave a HUMAN experience. So yes,... [ more ]
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J-Pouch ForumsGeneral Discussion
Low potassium earlier, now low phosphorus
ConnieConnie
Scott F When potassium is very low or very high it can cause quite dangerous heart rhythm problems. Of all the electrolytes, potassium is the one most likely to be treated as a very urgent matter, with no time to lose. [ more ]
CTBarrister I had to have this immediately after my colectomy when my potassium shot down to alarmingly low levels. In those days (1992) Mount Sinai of NYC did not administer potassium by IV because of the risk of inducing cardiac arrest (in fact, potassium chloride is the critical ingredient in lethal injections in states which administer it as a death penalty punishment). As I recall liquid potassium is blood red and has a taste that gives vile a new meaning. I am puzzled as to the reason for the... [ more ]
Connie CT scan next week to check the healing progress. If or when it's far enough along, they will remove the infected plate. Then hopefully the pain meds will end sometime after that. It has been an unbelievably long haul--three years. The orthopedic surgeons claim it's "worth it" to save the toe, but no one has any idea of the extent of the psychological toll--on all of us, really. I did get through to the executive level at Blue Shield of CA. They did another peer review, the results of which... [ more ]
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J-Pouch ForumsGeneral Discussion
Apprehensive about making the pouch...
P Pluot
kathy smith If you're not ready for the next surgery and you're happy with life as it is now, you can put off the next step for quite a while. Some people have waited years. And even if you do schedule the next surgery, you can cancel it right up until the time they put you under. (I'm sure they don't like that but you're the customer.) Often just knowing that you have that control will allow your brain to get behind the surgery. It seems to me that most of the permanent ileo people here REALLY like... [ more ]
liz11 oh my liz. I felt exactly as you are describing. I had to wait a minimun of 6months between step 1 and 2 because of how sick I was. But during that timeframe I felt so much healthier. I was active, gained weight, was eating anything I wanted, etc.. I spoke to my surgeon about just sticking with an end ileo. .. and he truly laughed in my face. Yes he laughed right at me. He said why would a young, attractive, fit female want to live her life with a bag attached to her. He made me feel... [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch-Friendly Food Ideas
bootstrapbootstrap
liz11 oatmeal (the real stuff not packages) fresh mashed potatoes - not instant baked potates with cheese mac n'cheese with other stuff in it - like squash all sorts of creamy,pureed soups - roast or cook vegetables and potatoes, put them in broth on the stove, hand blenderize them, add greek yogurt or milk to thicken smoothies made with greek yogurt and fruit - even just bananas and pb if you are afraid of blended blueberries, etc. sweet potatoes roast chicken and over cooked veggies bananas... [ more ]
Space-baby I seem to be the only one who can eat chocolate with no problem, and I do mean gobbling down a 100 gram bar of 70% dark choc right after lunch. I'm set for the afternoon of work and it does not increase my bm's. Yoghurt has been my best friend. And Quarck. Fatty foods and butter are not great for me. Oh, except for fries. French fries have been really good. In fact, my pouch seems to really like it when I eat at McDonalds, but I don't do that very often at all. Oats are very good and my... [ more ]
LC I've had my pouch for a while so I can eat almost everything. For those of you who get sick eating tomatoes, have you tried peeling them? Tomatoes, peppers, and eggplant bother me (pouch pain) but not when they are peeled. I eat salads all the time and while they loosen me up, it's usually a one time thing. I also drink coffee but I try to keep it to one cup a day or so but that is more because I get some stomach discomfort than pouch problems. In fact, my perfect breakfast is yogurt, a... [ more ]
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J-Pouch ForumsGeneral Discussion
Can't put on weight - HELP!
R Rosco79
liz11 try getting rid of milk. Also reduce your sugar intake. For example, most peanut butters are full of sugar. Try a natural peanut butter with no sugary additives. [ more ]
Rosco79 thanks, I'll try upping my protein. I feel very bloated and then not hungry for hours after I drink milk or have peanut butter so I can't really go for the shake [ more ]
liz11 think protein. Make sure that you are eating lots of protein and every one of your meals..meaning 5 or six meals a day. [ more ]
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J-Pouch ForumsGeneral Discussion
How long between pouchitis bouts is a recurrance?
H HLL
HLL Thank you for all of your comments, everyone. I saw the surgeon today. I had forgotten how thorough he is! He thankfully used a pediatric something or other when he checked my pouch. He could see granules and no signs of Crohns but said it can be hard to tell. He fired a letter off to my GP saying no Biaxin, stick with Flagyl and then Cipro. Right now he has me doing two weeks of Flagyl only. If I'm not feeling better in two weeks he will call in Cipro for another two weeks. If I'm not... [ more ]
notsotough The diagnosis of chronic pouchits is not only based on symptoms although obviously important but also the histology form any biopsies. Hence it is important in the face of continuing problems to be seen scoped and biopsied. This not only affects treatment but also funding of the same? Hope that is helpful [ more ]
HLL It's a miracle! My surgeon's secretary fit me in tomorrow afternoon. That's unheard of. I cancelled my GP appointment but I will still print out the info for next time. Thanks, Jan! [ more ]
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J-Pouch ForumsGeneral Discussion
Please help me figure out how serious this is
LionsPrideLionsPride
TE Marie I'm sorry you are having so much going on at the same time. The stress has to be awful. Jan and everyone has given you great advice about your health. I'd like to add to please do your best to obtain the new job or promotion. Since you can not predict your medical problems and they might easily be solved I say go for it. You can always turn down a job but if you don't fully commit yourself to obtaining it in the first place you'll feel bad if you don't get it. I'm concerned about your blood... [ more ]
Lorsall Do you notice yourself getting really full after a relatively small amount of food? I ask because the slow transit, bloating, and pain are all hallmark symptoms of gastroparesis. You can ask about a gastric emptying scintigraphy, which is an easy, albeit boring test. [ more ]
Spooky Lionspride, sorry you are going though this. I see you mentioned bleeding. I wish I had some words of wisdom, but I just had an MRI enterography today because I've had some episodes of bleeding going back to October, in some cases quite a bit of blood. I will certainly report back any findings, as they might shed some light on what is happening with others here as well. [ more ]
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J-Pouch ForumsGeneral Discussion
Happy Anniversary to me!
RM Randi M
TE Marie Congratulations! Have a great vacation and remember not to drink the water, it might cause diarrhea [ more ]
Scott F My travel advice would be to avoid bicycle trips in Thailand until you've mastered asian squat toilets. I can personally vouch for this advice, though it's unlikely to be of much use to you. [ more ]
mgiamartino thanks for sharing--and happy anniversary to you. enjoy your trip, you deserve it [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Scope
K KiwiPoucher
Jan Dollar Oh my! Well, can't blame the staff then! Perhaps you can ask your surgeon to "enlighten" this fellow about the difference between an ileal pouch and a colon! Or, you may ask him if he requires this prep for an ileostomy scoping, since it is essentially the same organ. Even when my docs were still prescribing the purging prep, they would tell me to take half a bottle or whatever cleaned me out. Good luck! Jan [ more ]
jpouch2008 In my case, I was with my GI in his office as I have just gone from surgeon's care back to my old GI who works at a diff hospital. He told me to book a scope with reception and I asked him about prep,etc. He insisted it will be full prep as it used to be. I explained that I hadnt had that in the 5 years of having scopes with surgeon. He would not even listen. [ more ]
Jan Dollar Often, it isn't even the doc issuing the instructions. He schedules a flexible sigmoidscopy and does not think to issue special prep instructions. Then the office assistant sends out the standard instructions. It can take some leg work to get a message back to the GI for clarification. That's why I LOVE email access to my docs....no middle man, lost in translation, yada yada... Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Jan & others...autoimmune & face fillers, lasers
H hattie
skn69 Wow!! Subzero...you sound like you have done your research well on this and that the results are great! I am a ball of scars all over my body...legs (2 gracillis muscle grafts = 16 horrible scars), abdomen with 9 horrid scars + all of the laporoscopy scars that look like just as many bellybuttons all over the palce (they sunk!), face and body from cyst removal everywhere (I grow cysts that infect and need to be removed but they leave the darn things open to drain afterwards...you get the... [ more ]
Subzeromambo Sharon, I am extremely happy with the results. When I got to the er in Minnesota, they had to cut off the blackened skin and treat the frostbite. Four months later I was ready for cosmetic treatment. I had two treatments about four weeks apart for the frostbite by a plastic surgeon. He did inject collagen and steroids under different parts of the scar tissue. The laser did not hurt at all. Right now I am the only one who can still see damage. I started seeing improvement in two weeks after... [ more ]
AllyKat I saw my dermatologist recently about fillers and she suggested jeverderm as well. She said no problems with auto immune disease. Have fun and look great at your sons wedding. Wish I did them 2 years ago for my daughters. Might treat myself this year for my OMG 60! [ more ]
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J-Pouch ForumsGeneral Discussion
3 Months After Takedown
D daveski
D. Nocerino You're an inspiration! I got the take down and j pouch 2 months ago. Still having difficulty adjusting and still going frequently, but I wanna hit the weight room again and start training to play hockey! Keep going strong!!! [ more ]
KCookie Thank you so much for posting! Congrats on your success. I'm so glad to hear positive results, especially when my husband is deciding between jpouch and perm ileo. Thanks again. [ more ]
TE Marie For those considering the operation this is the way things go the majority of the time! Congratulations Dave! [ more ]
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J-Pouch ForumsGeneral Discussion
Xanthan Gum
JD Jeff D
TE Marie I took the "clear capsules" with the actual metamucil or generic powder inside of them. They were not a hard pill. Nothing came out looking weird at all. I passed some strange stuff out of my loop ileostomy so didn't take chances with hard pills or supplements of any type while getting the surgeries and after. [ more ]
Scott F The Benefiber brand has been off the shelves for almost a year now. It should come back at some point, and store-brand competitors are available. If Metamucil isn't effective enough, Konsyl reportedly has more soluble fiber per dose (it's more like Metamucil than Benefiber). I had poor results with the Metamucil capsules, since they didn't mix sufficiently, and came out looking like exploded capsules. The Metamucil powder works for me. [ more ]
TE Marie I think Liz's idea is great as we are not suppose to drink the fiber with as much water as coloned people. We are using it to bind our food and slow the digestion process down. I used the capsules instead of stirring it in liquid and found 3 before 3 times eating a day worked for me. 5 capsules = 1 serving of metamucil. I gradually cut it out as I didn't need it as my pouch matured. [ more ]
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J-Pouch ForumsGeneral Discussion
c diff
D drcvb
TE Marie Cipro is a good antibiotic that I use to take a lot. It is what I was taking right before I contracted c-diff years before my surgeries. I don't know all the names of antibiotics that can lead to c-diff are. I forget what I was taking during and after my surgeries, for my abscess etc. but it wasn't Cipro. I wasn't on any antibiotics this time I contracted it. My immune system is probably weak and invited it in. In any event I got it again in my pouch and having it and cuffitis at the same... [ more ]
Pouchomarx interesting regarding the cdiff. I was told and have been on Cipro a few times in the past and it was prescribed by either Shen or his colleague Lashner at CCF. I had cdiff right after takedown [ more ]
TE Marie I'm taking VSL#3DS probiotics and recently started taking "s.boulardii" the s stands for "saccharomyces". The s.boulardii is a probiotic strain not included in VSL#3DS. This is a specific probiotic that is good in fighting c-diff. Jan directed me to information on this. I ordered it from amazon for $14. 90 (non dairy) 5 Billion doses and the suggested 1 capsule twice a day. There were several different brands. After opening it is to be refrigerated to extend it's shelf life. I hope it's... [ more ]
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J-Pouch ForumsGeneral Discussion
Research question
JS Joe S.
CTBarrister -The role that diet plays in UC and specifically the growing debate over whether reducing consumption of carbs, sugars and processed foods can ameliorate symptoms. This debate may be a hotter button topic in the context of pouchitis (Dr. Bo Shen is a leading expert who advocates reduction of carbs and sugars in pouchitis patients), but it has some interest with UC as well. One of my best friends just learned his 6 year old niece has UC and he and his sister have been getting into fights over... [ more ]
Spooky - Genetic link to UC/IBD - UC vs. Crohns and/or indeterminant colitis: flipsides of the same coin? - what percentage of patients eventually have their diagnosis changed? How often after the initial dx is the 'new' diagnosis confirmed? Also, did the dx actually change, or was the patient initially misdiagnosed? Or, is there really not much difference in UC vs. Crohns other than how the disease originally manifests? - Is UC really more prominent in northern hemisphere, western nations, or is... [ more ]
Rick822 Why fecal microbiota transplantation be not being offered as a treatment and possible cure for uc. Thereis an excellent.article at i have uc/fmt [ more ]
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J-Pouch ForumsGeneral Discussion
Spasmodic Pouch?
JD Jeff D
CTBarrister Jeff- Just so you know bentyl and levsin are the "front line" drugs prescribed for spasmodic pouch. They worked, but the side effects were too strong for me. They may not be for you. As Jeanne noted donnatal is also prescribed for irritable bowel syndrome and it is something of a multipurpose drug. I found that it worked just as well for spasmodic pouch issues as bentyl and levsin with less of a side effect. You may want to try bentyl first because it may not tag you with loopiness like it... [ more ]
TE Marie I had IBS with UC and was diagnosed with IPS with my j-pouch, along with chronic cuffitis. Have you got IPS now too jeane? [ more ]
jeane Jeff..just an add on to CTBarrister's comments regarding the possibility of your having a spastic pouch. Donnatal is often given for irritable bowel. I was also prescribed it during my UC days as I had irritable bowel coupled with my UC. [ more ]
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J-Pouch ForumsGeneral Discussion
I&D and needle/knife and injection
L liz11
skn69 No knowledge or advice Liz, Just hugs Sharon [ more ]
n/a Liz I am so sorry to hear about all this you're going through. Can't offer any advice, although I wish I could - will instead send the most positive vibes possible. [ more ]
jeane Liz, I wish I could offer you some advice. I feel for you with all you are going through as I know you just want all of this to end and get on with your life. I am sending thoughts and prayers to you. You deserve to find the path to better health and I will pray it happens soon for you after you get through your next procedure. Hugs to you as you have been such a HUGE help for others like myself on this board. [ more ]
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J-Pouch ForumsGeneral Discussion
tincture of opium
S Stone
liz11 Jeff mine was covered by insurance. It is a controlled substance so you need the paper prescription to get it filled. I never found a pharmacy that stocked it, but they ordered it and i always got it in a few days. And exactly donna, i would put my few drops in a syringe (i never mixed it with water), hold my breath, squirt it in my mouth, MAKE A FACE, SCREAm YUCK, And voila! [ more ]
Donna H I took Tincture of Opium for 16 years and I never built a tolerance for it and it was my savior when I needed to NOT use a bathroom when I was out and about. I took between 8 - 12 drops twice a day. It does taste nasty but a small price to pay for what it does. I would just put the drops in a small amount of water, take a sip, make a face, and voila. It is so expensive and I was lucky enough that my insurance paid for it. I would prepare a small bottle with my 8 or 9 drops with a bit of... [ more ]
Stone You are so right Liz. It works quite well. I took it down a notch. I could feel the difference . Im glad you mentioned that. Life can be so miserable and with a drop of disgust life gets beautiful. You can finally start enjoying the things around you. Thank you [ more ]
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J-Pouch ForumsGeneral Discussion
Pouch Scope went well; have questions
K Kia
TE Marie It would be nice if you could start taking it now. I called my insurance company directly and asked if it was covered. I'd suggest you call your soon to be former insurance company and see if the DS is covered. Then a call to your doctor's nurse, asking for it to be called in with the DS might be all you need to do. If CVS is anything like Walgreens, the pharmacy you go to may have never had it prescribed for someone there before. I have to give mine a few days to get it in, they don't have... [ more ]
Scott F The DS requires a prescription, and thus most insurance plans cover it (or can be wrestled into submission). In my experience it's always been at the highest deductible tier. I've given up on getting it by mail order with my current insurance. I can get them to agree, but the time investment just isn't worth it. So I just get it at the pharmacy now. Some docs will write for the maximum dose (4 DS packets/day) even if you might take less. If your deductible is on a per month basis this can... [ more ]
Kia Thanks, Marie. I called CVS and learned she called in VSL#3 and that my insurance *may* cover the DS with a letter submission of medical necessity from my GI. The other fun wrinkle is my husband's employer is switching to a new insurance company effective March 1. Therefore, by the time we jump through the hoops with our current insurance, we'll probably already be moved to the new carrier. We don't have the new carrier info or insurance cards yet, so who knows if they will cover it. Sheesh. [ more ]
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J-Pouch ForumsGeneral Discussion
When will I be "safe"?
MN Mark N
Jan Dollar I guess I am sort of the buzz kill here, but I think once you have the diagnosis, you never are truly "free." Sure, the docs will tell you that once you pass a certain number of years without any signs of cancer, you can relax, but you still will need to continue to monitor indefinitely, as we all do. You can consider yourself cured, but still be vigilant. Jan [ more ]
jeane I think you should celebrate also. My mom had CC diagnosed 17 years ago with 2 lymph nodes involved and a highly aggressive type of cancer. She is alive and well today after having the tumor and part of her colon removed (no UC as that is on dad's side) and will be celebrating her 70th birthday this week. God bless and here is to continued good health. [ more ]
kathy smith I'm assuming you're now, and will continue to be, one of those above the sod. Wouldn't it be wonderful to have a crystal ball and know once-and-for-all if that cancer was truly gone forever? Since you don't have that, I think you'll just have to believe that it's so. Now go out and have a bit of fun and celebrate 7 years of cancer freedom! And congratulations! kathy [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Living with a bag....
CatajaCataja
Scott F I've composed several posts on this thread and then discarded them, thinking I hadn't captured the issue quite correctly. It seems like each of us is fighting for something that feels as close to "normal" as we can achieve. The idea of what is closer to (or further from) normal is really very personal - for some it might have more to do with pain, for others appearance might dominate (these are just examples). The fact that this is often a fight may lead to the jarring language, but as... [ more ]
DavieG I am just back from hospital (see other post ) having had a really rough 18 months or so. I can say without hesitation that had the surgeon not found and removed the polyps that appear to have been the cause of my misery I would have immediately been discussing a permamnent end ileo. Something had to change to give me a life back and no I would not rather have died. So Cataja I hear you and agree that sensitivity is a necessity here. We must all also understand everyone is different and have... [ more ]
fq Clever1 - you look handsome from your photo...I am sure you will have no problem landing a date. Confidence and charm will win a girl [ more ]
See all 27 replies...
J-Pouch ForumsGeneral Discussion
New doctor is not recommending liquid vitamins. What do you think?
K Kia
Kia Thank you, Sharon. You continue to give me hope. After I got the results, I had a momentary feeling of "maybe it's just in my head or I'm being lazy." I snapped myself out of it, though. I am not going to buy into that anymore. [ more ]
skn69 Kia, Sometimes it is a combination of a lot of factors...general systemic exhaustion post disease/sugery/convalecence, diet, sleep deprivation and PTSD...it does not have to be just 1 problem and often requires a multipronged solution (diet, exercise, sleep (lots of sleeeeeep), suppliments (not all vitamins have to be at critically low levels to have a negative effect on you), dehydration, meds...). We have all learned here that there is rarely ever a single magic bullit solution...keep... [ more ]
Kia Disappointed. My blood results this morning are all normal, except Vitamin D deficiency. Well, I know that is good but I am disappointed bc it doesn't explain why I am always so sleepy and worn out. My psychologist suggested it may just be due to regular disrupted sleep to go to the bathroom and wear and tear of being in regular pain from the incontinence. I can say that I have had some relief with the addition of the immodium, GasX and probiotics. I actually slept through the nite for 2... [ more ]
See all 24 replies...
J-Pouch ForumsGeneral Discussion
black outs when standing up
lovedby2lovedby2
lovedby2 Thank you all for the responses. I definitely have to take it slow, I'm having these more and more. Dr has me getting blood work done this week. He says he thinks I might be anemic. I also thought about my salt levels coukd be low, I'm going to mention it to him. Part of my daily regimen includes soaking in the bath to relieve some pain and pressure. O don't stand up anymore, that's for sure! I drain the bath low enough, do if I do pass out I won't drown, scary. I then climb out to a stool I... [ more ]
skn69 There is some sort of trick if I remember well...something like singing the words to a simple song (happy birthday for exaple...min 23 secs.) when changing positions...you have to move slowly and concentrate on first lowering your feet to the floor, then raising your body and then finally working to the standing position...the most dangerous changes in position are standing up after sitting on the toilet (we tend to think that because it hasn't been that long we can just pop up) and getting... [ more ]
kathy smith When I was severely dehydrated that would happen to me. Yep, you need to figure out what this is before you really knock yourself out. kathy [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
One Year Later...
LB Lisa B
Lisa B I had lymphoma 12 years ago and have always thought the two were related. I was treated with chemo and radiation to the neck and chest. That would be an interesting study! I tell people I could hang a shingle outside my house and be a doctor now!! [ more ]
clouseau That is fabulous news! Good for you! Isn't it interesting that sometimes it takes a major trauma, or multiple trauma's to see life differently and appreciate what you do have. I believe in the last 2 years since getting a lymphoma diagnosis and having serious pouch problems, (I think they are related), the lymphoma has exacerbated the GI problems, I appreciate things more. I used to run at such a wild pace, am a business consultant, and I have really slowed down, work a lot less, and seem to... [ more ]
skn69 Fabulous news! Love to hear the 'good side' of the story...keep enjoying that beautiful life of yours. Sharon [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Diet - What we eat really does make a difference
S Solomin
TE Marie Cindy, I think it's great you got to have the surgeries done in one step! Just be careful when adding new foods to your diet and only take a few bites until you see if it agrees with you. Watch out for fresh veggies and fruits, except bananas. They bother some of us but are fine with others. I hope all is going well! [ more ]
Cindy Michigan I had my J pouch surgery Jan 21st. It was supposed to be the first of two, but due to unforseen things inside, my surgeon went right to the J pouch. I am slowly introducing new things to my diet. Are there things I should avoid? I am not eating anything spicy or nuts seeds or popcorn. I don't seek the advice of dieticians, unless I could find one with a J pouch. [ more ]
Jan Dollar Agreed, but still, it makes sense to understand the science of nutrition. There are so many dubious claims out there, it is difficult to sort it all out. But, when a Registered Dietician (not just a nutritionist) speaks, I tend to listen, especially one with many years experience. They are the ones who have to have specific education and training to obtain their licenses. Still, you have to really listen, because they never will tell you that one thing or another will kill or cure you, just... [ more ]
See all 12 replies...
J-Pouch ForumsGeneral Discussion
Dysplasia in the Pouch
A Alysia
Alysia I am sorry that you had to go through 4 surgeries but at least we do have great surgeons and are lucky to live close to NYC. My surgery for the jpouch was done in one step. I started the 6mp January of 2010. There has not been much difference in my scopes in regards to the inflamation but the 6mp has significantlly reduced my nightime incontinence. And yes it did take about 4-6 months since I noticed a difference. [ more ]
CTBarrister Yes, Dr. Gorfine either assisted or led on all 4 of my bowel surgeries. He is an excellent surgeon. Dr. Bauer is great too. Don't know how long you have been on the 6MP but my understanding is it takes some time before the results become palpable. [ more ]
Alysia Ok, I really hate my laptop because I just spent a long time typing a message and I must of deleted most of it So in a nutshell CTBarrister, I think we have the same surgeons, Dr. Bauer and Dr. Gorfine who by the way are awesome. Anyway my gastro says my last option to try is Cimzia and I am scared to go on that especially since I feel okay. I also discussed Cimzia with Dr. Gorfine and he feels if I am doing okay with the 6mp he thinks i should just stay with that since that medication has... [ more ]
See all 18 replies...
J-Pouch ForumsGeneral Discussion
LEAKS :(
G GraceL
GraceL Thanks went to see my stoma nurse she gave me different bag that pushes the skin down to make the stoma set out from the skin. It also has security ring in the outside to hold it in place. Seems to be working but confidence shook a bit and now have turned into one this people that constantly check the bag. She gave me a barrier to put on skin also which seems to be helping the irritations.i never had an issue with my stoma until now. Also do any of you find that no matter what you sa your... [ more ]
UCWarrior2010 Hi Grace, I am sorry that you are having a hard time with the new stoma. The leaks can really put one down but hang in there. Once you find the right supplies you will not have to deal with leaks. Try to see a good stoma nurse ASAP. I was having some issues with my stoma too and my nurse suggested I start using an adhesive paste along with other stuff and it seems to have fixed the problem. I also use Hollister products and so far they seem to do the job fine. [ more ]
D. Nocerino Yeah I had a big problem with leaks too when I got a loop from an end stoma. My stoma nurse came the next day and gave me different appliance with a riser that was better for loop ileostomies. I even had to customize how I put the adhesive on the flange each change. Best thing you can do is get your stoma nurse asap! There's also a spray and powder that will help heal your skin. I used holister stoma supplies and they're the best! [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
bowel transplant
Holly MHolly M
Spooky They do colon transplants, but almost always as part of a multi-organ transplant; that is to say, it's very doubtful you'd see one by itself. The truth of the matter is, you can live without a colon, even with all the drawbacks. You can't live without a small bowel, or a heart, or at least 1 kidney, etc. The bottom line is, a colon transplant is not medically necessary, therefore it's not a high priority to develop such a surgery. Even if colon transplants were available, there are dozens of... [ more ]
Jan Dollar This is a fairly frequent question. Doubtful that colon transplant will occur, although there are some intestinal transplants that include the colon. That said, the reason it is unlikely is that to be a candidate for intestinal transplant, it has to be life preserving. This means that you cannot tolerate TPN anymore, and your intestines are so dysfunctional that you will die otherwise. The fact is that we can live pretty well without a colon, so it is not likely to be a priority. I suppose... [ more ]
CTBarrister Whose small bowel got used for the transplant? In other words, who was the donor? [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
gas and groin pain
fqfq
Becca67 Thank you [ more ]
TE Marie Welcome to the group Becca67! [ more ]
Becca67 I am new to the forum as well but had to respond to this. YES! I would get total pain/spasm in my groin/whole pelvic floor when my pouch was full. It would send everything into spasm so bad until I would go to the bathroom. Gas made it so much worse. It would radiate into my left butt cheek and down my leg too. After about 2 months now...had my takedown surgery 11/29 they have finally started to subside. My surgeon also prescribed some Levsin which seemed to help quite a bit. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
anyone in middle east??? plus 3 years + j pocuhers?
A L IA L I
CTBarrister Poster Hichick is from Israel, has a J pouch and has done fairly well with it although I believe he is treating pouchitis with antibiotics. Not sure of what his exact medical regimen is at this time. I have had a J Pouch 20 years and although I have to take quite a few meds to control chronic "simmering" pouchitis, I am doing well. Flagyl is in my reigmen, along with cipro which I rotate with xifaxin and augmentin. I also take entocort (Budesonide) and pentasa and I get scoped annually per... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
1 Year Anniversary
Holly MHolly M
kathy smith Congratulations Holly! kathy [ more ]
grandmaof1 My one year from my first surgery was January 27th. I so agree 2012 was something else. My take down was March 16th so I have one more anniversary coming up. How are you doing? I still have diarrhea and it seems now every time I have to pee I have to poo to. I guess at least I am not blocked and never have been. I have good days and bad days. I am still on a lot of medicine. I love Levsin/sl. But what I hate the most is how tired I am all the time. I am on vitamins. But at least I am alive... [ more ]
TE Marie Congratulations! Happy pouch birthday, don't you feel like you should get a purple heart or some kind of award for making it through the first year? I sure did. Our reward is that hopefully the worst is behind us [ more ]
See all 4 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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