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J-Pouch ForumsHelp! Need advice now!
Stool/Blood when urinating
J Jpoucher4life
TE Marie A year to clear a bladder infection, on no! I'm being treated for one now and usually I feel better after a day or two on antibiotics, not this time. I hurt on the outside too. Is that normal too? I'm using an antibiotic cream externally, bactrim. [ more ]
Jan Dollar It could stop and start like that, epecially if there were clots that took a while to break down. Antibiotics might help with a fistula, but if it is there already, antibiotics would probably just stop it from getting worse. It would take months or longer to get it to close that way. But, sometimes just keeping it small and not draining is enough. I still would not assume this is a fistula, at least not yet. Sometimes bad bladder infections are just that, and just need more intense therapy... [ more ]
Jpoucher4life Thanks! Would old blood last for a few days stop and then come back? I did go to my general doctor and I for sure had a bladder infection. Would getting on antibiotics stop a fistula? [ more ]
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J-Pouch ForumsGeneral Discussion
How has your career been affected by your illness?
K Kia
Indy_Dave I get to take a few extra poop breaks during the day and nobody can complain - I also get to have soda at my station due to dehydration.... [ more ]
JillM I worked in Human Resources and was fortunate to be able to pick companies that I felt would be supportive. I had some fabulous bosses who were 100% behind me. So I always had a good job and had a good schedule. However, if not for UC, I would have pursued a Directorship and would have been making a lot more money. I was always very open about my situation, shared probably more than some people were comfortable with, and just accepted that this is how I was and everyone else would have to... [ more ]
Murray My career wasent affected by UC as I never had a flair up ofter the first one at age 17, but once they took the colon it was game over,thanks for 30 years service, and good bye,and don't let the door hit your ass on the way out. [ more ]
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J-Pouch ForumsPouchitis
Considering permanent ileostomy
R Rhema
Sean NY I am also weighing my options. My j-pouch surgeries were in 2004. Since then I do not feel like my gut has slowed down very much. I now have pouchitis (noted on my last scope a month ago). First I completed a course of Cipro. I am now on Metronidazole and will see how it goes. At night I wake several times and have leakage. During the day I have lots or urgency and irritation after using the restroom. I am getting tired of feeling worn out and even though Lomotil is helpful I feel it has a... [ more ]
Rhema Thank you to all who have so far responded. I'm in the process of researching and weighing all options so your suggestions and sharing of your experiences are most valuable to me. Rhema [ more ]
Scott F Rhema- I'm guessing you have the basics covered, but just in case: are you using something strong enough (for you) to slow things down (like Lomotil or even DTO)? Are you using Metamucil (or something like it)? Would you consider a fecal transplant, which apparently can work extremely well? When the antibiotics work they seem to kick in fairly quickly, so if you're spending many months waiting for an ineffective treatment to work I'm not surprised you're ready to throw in the towel. [ more ]
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J-Pouch ForumsGeneral Discussion
time release
magic30magic30
mgmt10 Zyrtec works great for me. [ more ]
magic30 Thanks. I forgot about the other medicine for allergies. Get nervous anytime I have to take pill honestly. Appreciate the replys. [ more ]
Mattenheimer I prefer not to take time release. I've taken a different, time-release, capsule in the past... I could see the undissolved little pieces inside floating in the toilet when I went a little while later... [ more ]
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J-Pouch ForumsGeneral Discussion
VSL#3 not FDA approved, therefore denied by insurance
K Kia
TE Marie The directions say take 1/4 th to 4 packets a day so maybe you should start out with a smaller daily dose and see how that works. VSL#3DS is medical food and covered by United Health Care, if that helps. [ more ]
Jpouch8888 VSL#3 is usually not covered. VSL#3 DS (Double Strength) is typically covered. You may need to speak with supervisors as the agent on the phone may see VSL #3 and say it is denied. I spent a year appealing VSL#3, and then saw on this board to get a script for VSL#3 DS. Bam! it was covered. [ more ]
TinCan VSL#3 has shown promising results for people seeking to maintain remission from pouchitis. If that is your challenge, then it is certainly worth pursuing. I currently have a prescription for VSL#3 DS that is covered by my insurance. [ more ]
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J-Pouch ForumsGeneral Discussion
Please guys help me out!
J JGeorge
TE Marie Happy Easter and God Bless you too. [ more ]
JGeorge I'm on Imodium, Sopa - K (Potassium), Omega 3-6-9 & Centrum. thank you all for your tips. I 've a feeling that it might be related to the operation or that the mucus that was swimming in my abdomen cavity has irritated my nervs. Happy Easter for everybody. I do trust that Jesus will help me through this one as well. God blesses [ more ]
ElmerFudd You did not mention all the meds you are taking - both prescription and over the counter. What do you take? Some meds are known to increase restless muscless (found a study, for example, that taking benadryl makes you 3x more likely to have restless leg). [ more ]
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J-Pouch ForumsGeneral Discussion
Protein supplements
JK Johnny K
TE Marie I'm using protein shake powder to make my fruit/veggie smoothies and probably not for the same purpose as most of you guys. If anyone is having a problem with whey you might want to try what I'm using as it is hypoallergenic, made from 100% plant ingredients and supplies 43% of the daily required protein, among other good nutrients. It's called PlantFusion. My Nutritionist started me on them. You can order it from Amazon or go to their website and enter your zip code and it tells where it is... [ more ]
Duct tape, Zip ties, and J-pouches John, I am 27 yrs old, and was 220lbs. before my first flare. Two weeks after my first surgery I was 140lbs. I am in the same boat as you, just quality muscle, I like to mountain bike, kayak, and hike. I have been very critical of my form and how my body feels. I am currently at 179-181lbs. I feel great and at 6 months post-op I don't feel it holds me back with lifting. I run, jump, bear hug lift 150lbs punching bags w/o issue. Something I do stress though is proper stretching and warm-up. I... [ more ]
Johnny K Thanks Jan, that’s what I was hoping to hear. I had heard that whey was better for us and I even spent a little more money at bought some powder that the guy at GNC said was one of the easiest to digest. I’m not sure what the gym uses, I guess I better ask. And yes, I meant gm not mg! Sorry . I don’t plan on going high with the protein, probably 30gm per shake and no more than two shakes a day. I don’t want to do anything to upset my pouch. My biggest issue is blockages and I don’t want to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
new left sided groin / hip pain
E EP
EP Thanks for responses. Swelling got much worse and huge lump going down thigh, hot to touch and unwell. GP insisting DVT so had ultrasound which showed it wasn't so then have to wait for another scan. Started on antibiotics. Pelvic floor exercises ain't gonna fix this one! [ more ]
NJK see your doc and then the doc can refer you to a pelvic floor specialist. However since this is new and you have had your pouch for so long I doubt it is pelvic floor disorder. but like I said see your doc. [ more ]
Gizmo see a pelvic floor physical therapist! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Am I sick or should I be concerned ???
PouchomarxPouchomarx
Pouchomarx been taking temp periodically all day and night and it has been constant 98.0 f [ more ]
Pouchomarx Thanks Jan, I called off work Tuesday cuz I woke up feeling like death. but been at work since. like a said its the headache and body aches with maybe low grade fever which I will find out today when I get that thermometer. I have felt warm in past when sick but thermometer never indicated that. [ more ]
Jan Dollar My primary concern for you is the fact you are on Entocort and have chronic disease (even if it is under control presently). This puts you in the position of reduced immune response (although Entocort is much better than systemic steroids). This can mean that you are contagious longer than other people with this virus, and you may be more susceptible to complications. If your symptoms keep up longer than 10-14 days, or become much worse, you probably should see your primary doctor, and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ishorectal abcess
G Ginabello
Ginabello Thanks Jan my doctor had a X-ray done for blockage and blood work to check for infection both were fine.. I am having a scope on the 2nd and he wants another ct scan..I just have so many more aches and pains very bad back pains and under left and right breast bone that radiates through my back.. I also feel like i hit a wall from feeling good and then the energy is sucked out of me..it becomes more intense before my period can there be a connection? One more strange thing is the inner... [ more ]
Jan Dollar Sure, any of that stuff is possible. However, not likely if the perianal abscess is draining. The reason is that fistulization occurs when there is pressure from the abscess and it is seeking an exit. Since it is draining, there is no pressure. What is most likely is that the pain you are experiencing is from contracted scar tissue within the muscle. Working on an eliptical really gets those large muscle groups working. Hopefully, with time, that pain will ease up as the scar tissue is... [ more ]
Ginabello Thanks Jan I am seeing my doctor today for the light headed feeling know I am lacking in something? Is there a way they can tell if its coming back I'm still dealing with this perianal abcess that was done at the same time.. My doctor says its not infected or no abcess is forming again but it drains a lot.. Can the 2 connect as in a fistula is that possible? Only good thing besides the draining and feeling like I can hit a brick wall at once pain is minamal at best I'm alright with it? It's... [ more ]
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J-Pouch ForumsK-Pouch Korner
Battle of the leaky valve continues!
EricEric
vanessavy I was using these. I get them on Amazon for a decent price and one usually lasts me a day. But someone said they were being more "green" and went with reusable nursing pads. I tried a few brands and found one that is decent so hopefully these will work. I am so tired of my trash basket piling up. [ more ]
skn69 Just a little P.S. to everyone else's good info...if you cannot afford the nursing pads (I think that they are expensive) then use those feminine panty liners (the biggest format that you can find) cut in half and then the Y slit down to the middle of it...then place the half around your tube...they are also very absorbant and somewhat cheap... I couldn't get the breast pads at a reasonable cost here so I used those. Sharon [ more ]
lesrich1 Eric, try this; buy some good quality nursing pads.I use Lansinoh regularly and have used Medela. I don't know what products you have. Cut a slit from the outer edge to the center and the make a small cross cut for the place for catheter to sit. I recommend the nursing pads because they are more effective than gauze in keeping leakage from getting on your clothes. If you aren't using it, you will probably have to use paper tape to keep it on. [ more ]
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J-Pouch ForumsHelp! Need advice now!
ileostomy
J JLew
Hobbes650 Perhaps the surgery has to remove the blocked portion and reconnect the j-pouch, so the surgeon may want the pouch to heal for a bit. Or some other reason that would cause the j-pouch some needed rest. Every time I had problems I needed a temp ileostomy. Since you've had an ilesotomy before, my guess is that it was a temp loop ileostomy and I would think you'd be getting that again. Only real question I'd want to know is how long before the takedown. You won't have to worry about diet at... [ more ]
Pouchomarx That's odd.. why would you have surgery unless the blockage will not clear itself? when I had a partial blockage, the did NG tube, bowel rest, and pain meds. in hospital for a few days. no surgery though.. i'm confused?? [ more ]
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J-Pouch ForumsGeneral Discussion
My Bones Hurt
C chal
chal Thanks Jan. will keep this in mind. Went to PC dr. She ordered blood test to check many things. Wants to rule some things out first. [ more ]
Jan Dollar chal, just one more thing to think about: The more recent studies are showing that response to drugs like Humira is better when begun earlier in the disease process, before irreversible damage occurs. They still do not know if it will prevent progression as time goes on, but you have a better chance of the drug working if you start earlier rather than later. Tylenol will do absolutely nothing to interfere with the inflammation (and too much of it can damage your liver, so be careful). If you... [ more ]
TE Marie Akk, During my sleep study I was diagnosed with restless legs syndrome (RLS). It sounds like you might have it too. I have sleep apnea too. Anyway, I take medication before bed and sometimes in the late afternoons for it. I also have to take it before acupuncture and tests like MRI's. As hard as I try, I can not hold still long enough. [ more ]
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J-Pouch ForumsGeneral Discussion
Cleveland Clinic Scheduling--Feeling Lost
C CharlotteF
vanessavy Schedule a scope and appointment same day with Shen. His office is good about doing it that way to begin with. If you don't ask for a scope and see him he might have you come back. Make sure you don't go alone. Reason I couldn't get scoped the first time and I couldn't afford the 17 dollar an hour caretaker they provide for the day. They are usually good about trying to get you into seeing people you need the same week. I stayed a week the first time and had to change my flight. I should... [ more ]
n/a If you have any thoughts of trying to save the pouch, I would see Dr. Shen first, and discuss options. I believe Dr. Shen only scopes in the morning; office appts. are in the afternoon. If he asks you to "come back next week" for a scope, explain that you have to get back to work, or are travelling, etc., and he'll make every effort to get you in the next morning that he scopes. If you are leaning more towards surgery: pouch removal (or redo, etc.), you could delay the surgeon's appt. until... [ more ]
liz11 Scheduling at CC can be a complete nightmare. But you've passed the first hurdle as you have appointments with two highly respected docs. Congrats! I would keep the appts you have BUT I would schedule to stay another one or two days so that you can get testing done. Don't know what day of the week you have appointments, but I would definitely stay long enough to make sure you are there on a day that Dr. Shen does scoping procedures. I know he does them Wed and Fri mornings but I don't know... [ more ]
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J-Pouch ForumsPouchitis
Pain medication for pouchitis?
K Kia
Kia Thanks for the replies. This is the first time I've had treatment for a long standing flare so hopefully it won't get to the point ever again of needing pain management. Now that I know what pouchitis is, hopefully I can catch it quickly. Even better....hopefully it will never come back!!!! [ more ]
Pouchomarx I am prescribed oxycodone for my pouch spasms since I cant take antispasm meds, they make me so blurry I cant see. [ more ]
Mattenheimer Oh, you might want to talk to your GI doc about an opium tincture. I use that many nights... It is such a small dose, it does nothing for pain, no tiredness or euphoric effect, but it does slow down my frequency through the night and that helps me a LOT [ more ]
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J-Pouch ForumsGeneral Discussion
What is in the space where colon used to be?
nysnys
TE Marie LOL guys! Thanks, I'm feeling pretty good today Sharon [ more ]
Rocket TE Marie, Well then I am definately the baboon. I'm full of hot air. Now it explains why my teenage daughter will sometimes refer to me as "Monkey Butt" when we are playing around. Thanks for participating in my humor. Rocket [ more ]
mad hatter From a guy’s stand point it means our livers can fill out the space witch equates to better beer consumption / absorption.....Happy Days [ more ]
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J-Pouch ForumsGeneral Discussion
Post Takedown Pain
L LisaB827
Duct tape, Zip ties, and J-pouches As rough as it feels, especially the frequency, it is completely normal. I questioned my decision for surgery 1 week post-op. As you start to heal, scar tissue forms and can develope its own nerve endings and blood supply. The only thing I can suggest is try stay limber. It will cut down on adhesions and reduce further injuries due to tears (as long as you ease into the streches) I used a swiss ball and it was a GREAT help. Also you are at three weeks post-op, give it time. Try going on... [ more ]
Mattenheimer A good rule of thumb... Every hour under anesthesia in surgery, takes a week to start to feel "normal"... Full recovery can take much longer than that.... [ more ]
LisaB827 I'm going to the bathroom 8-10 times a day. I've tried gas-x, a stool softener and a laxative (just to make sure I wasn't getting backed up again). Other than that I haven't taken anything, and I haven't taken these in the past few days. My bowels are also really noisy as everything is moving through me. Thanks! [ more ]
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J-Pouch ForumsK-Pouch Korner
Still leaking
EricEric
vanessavy Thanks Josh! For the reply and PM. I did have an abcess, I have 2 actually that were so tiny CC wasn't concerned with but this one just got huge real fast. Was a total pain since it wasn't real liquid, just real thick stuff with a lot of blood. The surgeon just had to dig it all out with a Qtip. And now I have to be super clean there and pack it so I don't get an infection since I have cdiff taking another antibiotic can be a big problem. If I have signs of infection then they said no... [ more ]
skn69 Vanessa, I've been thinking about you all night (not like that!!!) and wondering about your diet...I know that you are very athletic and eat healthy...how much fruit/veggies do you eat? How is your fiber load? Do you eat/drink milk products? Whole grain breads? I am wondering how much of what you feel or are suffering can/could be controlled through diet...No, I am not kidding....(diet does not fix a broken valve or clear up C-diff but it may help with the gas etc)...it is spring here and I... [ more ]
skn69 I just tried to google the schema of the surgery to see how they do it...very interesting procedure...I am still not sure of the details because there is only one picture of it and it looks like the small bowel in 'woven' into the pouch and comes out to wrap itself around the valve...wow! I am blown away at the concept...I had never seen the pics before...mine is totally different...it just looks like my valve is wearing a turtle neck sweater...so technically, your living collar actually has... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Will I be able to?
BreannBreann
rockandroller Agree completely with JillM. I can't think he means your uterus will be compromised in such a way that you won't be able to have kids, but that he's speaking to the sometimes dramatically decreased ability to actually GET pregnant that comes with this surgery as a result of scar tissue that makes it difficult, which can block fallopian tubes, reposition/move ovaries away from the tubes, etc. This is why so many pouchers have resulted to IVF to get pregnant, but the vast majority that I'm... [ more ]
JillM Unless the dr is seeing something unusual in your case, I wouldn't think your chances are "slim" There are many of us here with j-pouches who have had children. Some have needed fertility treatments, some haven't. I have three friends with pouches who do not visit this site who had children without fertility treatments. I had four surgeries - two for j-pouch, one to disconnect and one to remove. I did need IVF but I have two kids ages 7 and 4 1/2. If I were you I would ask the dr for more... [ more ]
skn69 Hi Breann, I was a year older than you when I had mine done...-and that was just about my first question to the surgeon once he finally agreed to the surgery...will I be able to have kids? It was 33+ yrs ago and they really couldn't give me a strait answer back then but now, with so much experience...they can say, Probably..yes....but...(this is the biggie)...any abdominal surgery can gum things up inside of you (scar tissue, inflamation, organs being pushed around a bit)...so, although so... [ more ]
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J-Pouch ForumsGeneral Discussion
A bit worried
L Lu31
Lu31 Thanks Jan. I appreicate your input and can see where you're coming from, and your husband is good example. But although i have a tendency to worry lots and focus on it, my pain is real. To me, my GI is addressing the symptoms (the nausea that sometiems is there) instead of the actual issue. Thanks for the link. I am sortuv hoping that an infection shows and antibiotics will solve the issue. Cause otherwise, I've just been left with no guidance or suggestions of what to do and how to get... [ more ]
Jan Dollar The thing about anxiety and physical symptoms is that you don't have to be having anxious thoughts or feeling panicky for them to be related. For example, my husband will wake up in the middle of the night with an anxiety attack, with feelings of dread, cold sweats, etc. He gets mad because he "knows" he has nothing to feel anxious about. Then he would have anxiety about worrying when the next anxiety attack would occur. But, that is how anxiety disorder works. At first it is tied to some... [ more ]
Lu31 Thanks TE. Although I don't feel very good about the appointment as I'm no further ahead...still get pain after eating but nothing to help it. And what if this doesn't go away? My husband and I are going away for a few days end of April and will really suck if I'm still feeling yucky and can't really enjoy any meals. [ more ]
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J-Pouch ForumsGeneral Discussion
small milestone
Holly MHolly M
runner4449 Congrats! All milestones should be celebrated! [ more ]
skn69 I love those milestones, big or small they are all worth a Yeehaa! and a Yahooo! Mine was when my hubby and I took the car on cross country car trip and only had to stop every 4-6hrs for a break (granted, I only ate protiens for lunch and dinner)...but it was wonderful not to have to stop every hour on the hour... Keep the good news coming... Sharon [ more ]
Scott F I had a similar experience on a bicycle trip in the countryside outside Bangkok. There was supposed to be a bathroom at the place we stopped for lunch, but it turned out to be a squat toilet that I was completely unprepared for (and I was convinced I'd spray something unfortunate on my shoes). So I ended up holding out from about 8 AM until 6 PM, which I had believed impossible. I kind of like discovering that I can do something I'd considered impossible. [ more ]
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J-Pouch ForumsGeneral Discussion
One year since takedown
Epic ScotsmanEpic Scotsman
runner4449 Excellent! I'm almost 6 months out from takedown, and agree with you. Overall doing very, very well. May you have continued success as the success stories far outweigh the unsuccessful ones. More people need to hear the successful journeys so they can have hope that theirs, too, can and probably will be successful in the long run! [ more ]
magic30 You are one of the fortunate ones. As I am too. Many have a hard road... Thanks for a positve share. ALways encourageing [ more ]
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J-Pouch ForumsHelp! Need advice now!
PCA or Epidural
J JJR
kathy smith JJR - glad you're home and on the mend. It does take awhile to bounce back. But you'll get there. kathy [ more ]
JessGoguen Are you having a 2 or 3 step process? I don't think you'll need it for takedown if it's a two step lapro. I was on pain pills by the next day. It also helps the guts wake up if you can move around. I had a two inch incision where my stomach was due to scar tissue but had minimal pain. I am nearly 4 mos out and feeling awesome. It's nice to not be miserable w UC symptoms. [ more ]
JJR I thought I would followup on my decision. I decided to go with the PCA for Step 1. I was told that the epidural may not cover all of my incisions. I will likely do the epidural for my takedown surgery though. My surgery was successful, with a few minor hiccups. I was told the surgery would last about 4.5-5.5 hours, but because of my build it turned into an 8.5 hour surgery. I had some vocal cord damage from the intubation. It is slowing healing, but I may still need to have an ENT repair... [ more ]
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J-Pouch ForumsGeneral Discussion
Immodium (Loperamide)
G Goody2shoes
Duct tape, Zip ties, and J-pouches Are you having any cravings? I did with my temp ileo. I craved baked potatoes, and tropical fruit (ie dole canned tropical fruit in 100% juice) These coupled with gatorade/ water all but cured my fatigue and watery output. Your body will tell you what it needs, in my case it was potassium and vitamin c, oh and lots of carbs. [ more ]
Goody2shoes Hello liz11 in answer to your question "Just wondering what are they doing to help you?", very little unfortunately...! And thank you for your input Jodie - I must get a prescription for the lomotil and give it a try Jodie: I have just rang the chemist to see if Lomotil is available over the counter - and been told it isn't - and nor is it available on prescription, as there is a manufacturing problem (they reckon it hasn't been available for a few months...??) Who makes yours? [ more ]
Jodie_31_UK I use to take Loperamide but it stopped being effective. My consultant informed me that your can become immune to that drug making it ineffective. I have been taking Lomotil ever since and think it works better. I take 8 a day, 4 in the morning and 4 in the evening. They are definitely not the same! They can be used to treat/manage similar things. Jodie [ more ]
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J-Pouch ForumsGeneral Discussion
Expectations about adjusting to takedown?
knitwittyknitwitty
knitwitty Thanks everyone for all of your responses; they've been very helpful. [ more ]
mgmt10 Yes, JillM brings up a good point. It won't necessarily mean you will need a whole year to adjust. I was back to my regular, crazy life a month after takedown. It's just a new normal. [ more ]
JillM When people say it takes a year, generally they are referencing a return to your "normal" state - full energy, full diet, full activity, etc...Many people see this happen before a year. However, when people have issues, drs often remind them that it CAN take up to a year for the body to adjust. It doesn't mean it will for every person. [ more ]
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J-Pouch ForumsGeneral Discussion
pouchitis and pain meds
Akk3769Akk3769
Akk3769 It is very very hard to get pain meds from doctors. They think that everyone is going to abuse them or sell them. They don't realize that people like us actually need them sometimes. [ more ]
TE Marie You can still get Tramadol with a prescription so just ask your doctor for another prescription. If the Tramadol doesn't work well you can ask for something like Vicodin or Norco. You need to watch out how much tylenol and alcohol you are taking. Too much can cause liver damage. Please stay away from NSAIDs. [ more ]
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J-Pouch ForumsGeneral Discussion
HSA -v- FSA
D Dog
TE Marie We were forced on a HSA by my husband's former employer after he retired. He was non-union and the other management retirees all got together, sued and lost. The first $4,500 we have to pay. Since we know we always end up doing it we fully fund our HSA account every year and that makes it a negative tax adjustment on the first page of out tax return, the funding not spending amount. We can also pay for things our insurance doesn't cover like Chiropractor's and Acupuncture. After you reach 55... [ more ]
Dog Yes, I contacted the FSA manager (HealthHub or Payflex. . .not sure which is their official name). I was told that they are bound by IRS rules and the IRS says that the money must be SPENT by 3/15. Documentation must be received by 3/31. *shrug* If this is the only complication I have from getting a J-pouch, I'll take it with a smile. If you have an FSA, be careful! [ more ]
AyrishGrl Our FSA plan is based on our health insurance renewal schedule. I got lucky this year in that our plan renewed on 12-1-12 and so was before the new law that cuts you off at $2500 so i get the full $5000 for one more year. Of course that only takes me about 4 months to go through with our crappy insurance. I am not sure what I am going to do next year with it down to $2500. The HSA is tied to a high deductible plan which is not cut out for those with all sorts of health issues. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Same song different verse?
G Gigi68
Kia It really wouldn't have been a choice for me at the time I had the colectomy and J pouch in 1990. No medications available at the time were working and I was down to 89 pounds. I still feel fortunate, though, bc the J pouch surgery was an option for me. Since I was so young, I was glad I wouldn't have a permanent ostomy. I have had complications but I would still do it over again. I waited 5 years before I was willing to go through with the surgery. I was so young and afraid. I would have... [ more ]
skn69 Gigi, For a lot of us it was a 'non-choice' and for others it was not even a discussion...They woke up with 1 less colon and 1 new apparatus...others were given meds, drugs, options and choices... I was halfway in the middle...I tried every med out there, lived off of immodium, gravol, opiates etc from 9-18 and finally after all sorts of alternative treatments (no, chiropractors cannot cure us, nor can 30 days fasts, 3xs daily enimas with various juices in them, epsom salt lavage etc), I did... [ more ]
ValB Gigi, the surgery saved my life...I posted this under Success stories pls for SandyK: "I consider myself a success...my surgery (31 years ago) was experimental and no one was totally sure what would happen. With the exceptions of catching stomach bugs (they really suck) and only one case of pouchitis, am doing well. I still have bad nights and sometimes days where for seemingly no reason things decide to act up, but the good ones more than make up for it. When I consider where i was at 15,... [ more ]
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J-Pouch ForumsGeneral Discussion
injections or gracilis
L liz11
Jan Dollar I have my fingers crossed and sending you all the positive karma I have that the easy (sort of) route works and you can avoid the gracialis procedure. But, in the end, the way you are going, were you running marathons anyway? So, if it comes to that, I suppose it is the lesser of two evils. Neither is appetizing, but you need an end in sight, even if it is imperfect. Again, all the best luck to you! Jan [ more ]
Scott F I'd be surprised if simply losing the gracialis prevented you from running, though you may have to work hard at rehab for a while. [ more ]
skn69 TE, Lizz, Can we maybe join hands, chant in a circle and do a happy dance? Yes Lizz, The knees are a pain and I do believe that some of my hip problems are from that too but it may just be that the hips are something else entirely...but to put my 2.7cents in (calculate inflation please)...if it is the Only way to get that wound to heal then do not hesitate...you need to think healing before you can think running... Sharon [ more ]
See all 6 replies...
J-Pouch ForumsPouchitis
bloody stool and pouchitis
armywifearmywife
clz81 It definitely can be a symptom of pouchitis, but it could be cuffitis or delicate tissue as Clicky said or something else. I don't think the doc will really be able to give you much info without a scope. If the blood is minimal and you can hang on three more weeks, then while you're all numb down there, maybe your GI can come in and scope you at the same time :-) 3 weeks...so soon!!! Hope you are feeling ok otherwise...glad it's going to quickly for you! [ more ]
armywife Still pregnant for another 3 weeks!! Can't beleieve how fast it went!! I guess to be on safe side ill call the gastro and let him know. Thanks clicky! [ more ]
Clicky Hi Army wife, I know you are pregnant right? During the second half of my pregnancy, bleeding became a major issue. The did a scope at 26 weeks and found that the tissue was really delicate and bled easily. They lasered a particularly bad bit and said in normal circumstances it would have been OK but pregnancy increased pressure reducing venous return thereby increasing bleeding. I had at some points huge amounts of blood and at other times small amounts. Since my son was born in January I... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Frequent urges and cramps
J Joanie77
TE Marie Any sudden change in your habits like you are experiencing for more than a few days should be brought to your doctor's attention. It sounds like maybe it could be gas but unless you started eating completely differently than before it shouldn't be causing that much cramping. Besides pouchitis or cuffitis it could be IPS or a c-diff infection. There are many possibilities. Take care [ more ]
Kia Yes, many of us have had this. Could be pouchitis and can be easily treated with antibiotics. There are lots of posts on here about it. You likely should have a scope done to check for inflammation that can lead to these symptoms. Note, there can be other diagnoses like cuffitis but from what you are describing it sounds like it could be pouchitis. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
21 Year Old J-Poucher, Advice Needed
I Iainmacrfc
Kia Glad you have found some relief. I have not had spasm issues, but I just read a post by CTBarrister in the last day or so about treatment for this. If he doesn't reply soon, you might want to do a search on his recent posts. I hope you continue to improve! [ more ]
Iainmacrfc Many thanks to all that responded once again, some heart felt replies from those who've experienced similar problems to me! Thank you all Had my pouchoscpy on Friday and I'm relieved to say I only had mild inflammation and no prolapse. He put me on a short dose of flajyl and loperamide. I've now developed a new problem which is spasms in my backpasage after releasing my pouch. Any ideas how to soothe this, the only method I've found so far has been sitting in shallow water for 15 minutes? [ more ]
Kia So glad you found this forum. It is an incredible blessing! My history pretty much mirrors yours, including the approximate age time line, except that I am a good bit older than you now. I believe I've been walking around with undiagnosed pouchitis for 13 years. I found this forum and the right doc through this forum. Within less than two weeks I was diagnosed with pouchitis and put on Flagyl. My symptoms nearly disappeared after 16 hours on the drug. Last week I had some issues tolerating... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
New to the group
S sktobes
Dog Hard to tell as your system adjusts. You are only 2 weeks out, and you'll go through watery to pasty stools off and on, I think. Sleep, if you can get it, is great for healing. As I recall, I was up 2 or 3 times a night in the beginning. Now I usually only get up once at night. . .and only b/c I eat right before bed. The best advice I can give is: 1) Listen to your body. 2) Take it slow. Hopefully in a few months, you'll be out and about, putting your life back together! [ more ]
sktobes Thanks for the advice guys. Do you find sleep plays a big role in the output as well? I haven't slept as well for the last 2 nights and have noticed increased output and a bit less formed. [ more ]
Scott F The best exercise for about the first six weeks seems to be walking. Take as many walks as feel comfortable! You really can't walk too much as long as you pay attention to your body, and stop when your body wants to stop. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Passing water
ktakta
kathy smith I have Pedialyte pops in the freezer. I'll bet they've been there for over a decade.... I agree with you kta - it's vile. And when you're not feeling well, having to drink (or lick) something disgusting just doesn't work. I'm glad you're feeling better. kathy [ more ]
kta Thank you for all the replies. I am hopefully starting to feel better. I did go onto the Vitalyte website, but decided that since it was Sat. that it would be faster to get the Pedialyte. That stuff is disgusting! I got the unflavored because I tend to dislike phony flavorings, but next time I'll get the Vitalyte. I think I'll order some tomorrow because if this lasts 10 days like it did for Val, I will need it.I'm thickening up a bit and the cramps seem to have gone away. Kathy, that is... [ more ]
liz11 if you are getting that dehydrated.. go get some Pedialyte. any grocery store or drug store will have it. It is the closest thing to the electrolyte balance that needs replacing. Also do not hesitate to go to the ER. Those of us without colons can get dehydrated very quickly and oftentimes.. no matter how much water or electrolyte drink you chug.. cannot catch you up. IV hydration is sometimes required. [ more ]
See all 7 replies...
J-Pouch ForumsWomen's Health & Pregnancy
Ovarian cyst ....
M magcher
beckysmom Sorry to hear about your pain Macgher. If I may ask, is your pain 24/7? My daughter has been in pain 24/7 since 5 weeks post op for a strictureplasty. In between the surgeries she has had, May pouch revision and Jan strictureplasty, the GYN was following her for a cyst on her ovary that showed up during a CT scan for pouch issues. She was suppose to get another pelvic ultrasound 2 months ago (gets them every 3-6 months to check on this cyst) but with the surgeries she hasn't been able to go. [ more ]
CeeeeCeeee My ovarian cysts were unusual, I guess. I had no pain, no symptoms at all. They just kept growing as measured by ultrasound every 6 months for about 3 years. Finally, my ObGyn said my ovaries and all of the other reproductive parts had to come out. Because of my J-pouch she sent me to a colleague who was an ObGyn surgeon who specialized in patients with cancer. He was sure I would be a breeze for a laparoscopic procedure. I had warned him my colorectal surgeon said that wouldn't work because... [ more ]
JillM Ovarian cysts hurt a lot. Even without a pouch. My cousin has horrible pain with them and has a normal GI system. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Astragalus and cancer? Viral infections?
skn69skn69
skn69 Thanks John, Much clearer now.... Sharon [ more ]
Bodoni Astragalus Root (Huang qi) has been used as a popular herbal tonic in China for many centuries. Some of the known active components include polysaccharides, flavonoids, saponins, choline, betaine, folic acid, amino acids, vitamins, and 14 minerals - including selenium, zinc and iron. As an adaptogen, it helps the body regain balance and is the most popular herb in Chinese medicine for its tonifying, diuretic, cardiotonic, vasodilating and other useful qualities. Astragalus has been known to... [ more ]
skn69 I must be confused because I thought that it was the extract of a plant in the vetch family... Sharon [ more ]
See all 4 replies...
J-Pouch ForumsOstomy & Skin
Is there a list somewhere of manufacturers to contact to try different adhesives?
B Badplumbing
JillM Definitely get samples from Cymed. Where you expressed concern over visibility, these products would be great for you if they work. Very low profile, very flexible, can't even tell you are wearing them yourself. They do not make a convex product which is why I don't use them, but I'm going to try them again as my stoma has changed a bit these days. [ more ]
kathy smith Try this . The companies that you can contact directly are Coloplast, Hollister, Convatec. Edgepark also has supplies and I think people have said they're very helpful kathy [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
back in the cc hotel!
L liz11
Uc-Danielle Thanks me too! I'm still fighting pain. And fighting getting pain meds but I guess that's what happens. It's frustrating. Bc I know what the doctors said and when I call in I get questioned by the nurse pract. So frustrating! [ more ]
ActiveUC'er I disappeared from the board for awhile. I have to say Danielle, I really hoped that things would be better for you . And Liz...just wow. I hope things get better for you two. [ more ]
Uc-Danielle Kta- thank you! I greatly appreciate that. I'm slowly recovering. But like my last post my arms hurt from 2 infiltrations [ more ]
See all 31 replies...
J-Pouch ForumsGeneral Discussion
Pain urgency
Kline84Kline84
mgmt10 That's just crazy that he told you to wait til July for a scope. Obviously you have something going on there. Definatley call and insist they take a look-see. [ more ]
jeane Your symptoms are very similar to mine. I have chrinic cuffitis and pouchitis in my distal pouch due to an anastomotic structure. My pouch functions fine for the most part but my cuff and anal canal give me pain 24/7. May not be the case for you but a scope should reveal cause. Your emptying issues could be due to inflammation in the cuff and ATZ as I aski experience those symptoms. Unfortunately for me no meds are really working So I'm looking into pouch advancement after scope next month. [ more ]
See all 2 replies...
J-Pouch ForumsOstomy & Skin
You know you have an ostomy when...
bootstrapbootstrap
manders6 ...you look for shirts that are long and loose when shopping. ...you unconsciously put a hand over your bag to check if it's time to empty. (I found myself doing this even after I had my take-down for awhile! I've got my 4th temp ileostomy right now...) ...you buy the extra large, economy size bottle of loperamide (Imodium) and carry it everywhere with you. ...you have stopped wearing belts with pants. [ more ]
Jenmystique You want to create a barrier of some kind to keep the seatbelt off your stoma cause it is just "uncomfortable". A rude person who barely knows you (but loves to gossip) walks up to you at work and asks "do you have a BAG?" with a sneer, like it is any of their business and you hold up your purse and say "Yes! I got it on sale at Penney's. Isn't it cute?". [ more ]
hart155 you know you have an ostomy when... you'd rather empty your bag in a gas station restroom en route, where the smell will go un-noticed, than wait to get to your destination. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
Variety of issues
D duke_0518
magic30 Hi. Hey if you have fissures or hemorhoids...its real painful. Now I had both. And I didn't read the other replies so forgive any duplicates. But heres what I do that works... Ive done this since right after I had fissures at takedown and it was very painful at first. VERY MUCH. But it has lessoned and unless I eat something that bothers me I have virtually no pain now at a year and some months post take down. I have medical gloves, A and D ointment and Lidocaine prescribed. I only use the... [ more ]
ValB duke_0518, even though my pouch is old, i still remember those early days. you don't mention if you are on any kind of acid reflux medicine like nexium, or protonix. I wish we had had these back when. Talk to your doctor about something that will help reduce the acids...also, like subzeromambo noted, try to watch what you eat and when. Just a thought, but someone noted on another post yesterday about matzo crackers (?). Wonder if one of these a couple of hours before bedtime might help??? i... [ more ]
Subzeromambo I am so sorry you are going through the grinding broken glass sensation, sleep deprivation and the sphincter burning. I had the broken glass sensation and sphincter burning too. It was terrible. It started about a month after takedown. My doctor did not find a fissure. He diagnosed me with a type of nerve spasm. He prescribed a very low dose of valium whenever the pain started and half a dose of oxycodone (2.5 mg.)The valium relaxed the nerve spasm and the oxycodone helped with the burning... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
when i get old
magic30magic30
magic30 thanks for all the thoughtful replies and intimate stories. Appreciate this site so much [ more ]
CTBarrister In the early days of Alzheimer's Disease, my Grandfather knew something was wrong with him. He would take questions as very personal challenges, and when the answer would not readily come to him, he would start swearing a stream of profanities and say to me, "my [bleeping] head is full of marbles!" But you could keep Grandpa in good spirits by talking about the "good old days". He served in the US Navy during the 1920s, on the USS Oklahoma which was sunk in the Pearl Harbor Attack in 1941. [ more ]
skn69 In my French step-family the 'Mammie' (great grandma) was hospitalised at 93 for various ailements, I was in the same hospital for sepsis and a cystectomy...so I would pop up to visit her daily...the conversations were enlightening...she talked about the past (1920's-today), friends and family and told me that they all thought that she had altzhiemer's...but that she didn't, it just made life eaiser for her to allow them to think so...So while she was giving me elaborate receipes and telling... [ more ]
See all 25 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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