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J-Pouch ForumsGeneral Discussion
polyps in rectal cuff
S Sandyj
Sandyj Thank you all for your responses. I am awaiting the biopsy results to see if there was any dysplasia or malignancy of the polyps. I am assuming it will not result in any surgeries right away no matter the result. I have a very severe case of FAP and have been told I will undoubtedly end up with an ileostomy eventually. At this point we are trying to prolong it as long as possible. I have lots of polyps in my stomach and small intestine as well and have had adenomas removed from my ampulla... [ more ]
BillV I went 25 years with a j pouch and had no polyps in the rectal cuff, although a number were removed from the pouch itself and duodenum. At the time, I was on an annual scoping schedule. Then my GI biopsied a suspicious spot in the rectal cuff that turned out to be malignant. A CR surgeon removed it and fortunately took sufficient margin to eliminate risk of spreading. However, I believe my sphincter was compromised by that surgery. Five years later high grade dysplasia was found by the... [ more ]
Scott F Sandy, it is possible to perform "pouch advancement" surgery to eliminate the rectal cuff. I honestly don't know if it's appropriate for you. The surgery is delicate and hand-sewn, best done by a very experienced surgeon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post operative nausea
D Davidee
Davidee I'm not on any pain meds or anything else it might just be my system is a bit slow to get moving again...Thx for the tip on the anti nausea meds [ more ]
CTBarrister If you are past the postoperative ileus and pouch is emptying properly the nausea is not due to any transit issue. If you had some kind of partial blockage you would know it from pain. If it's just nausea and no pain or discomfort, something else is causing it. What meds are you taking? I would suggest trying Pepto Bismol which will calm the burping and gas and probably relieve the nausea. [ more ]
Davidee I did have a post operative ileous yes so I thought maybe the nausea was left over from that...it seems to be mainly at night now with a lot of burping and gurgling [ more ]
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J-Pouch ForumsGeneral Discussion
getting redo, questions regarding pouchitis
PouchomarxPouchomarx
SolomonSeal New pouch here... was told pouchitis won't happen and if it will it will be easily controlled... here I am with ~15 BM's a day due to "mild" pouchitis. I already said that I think getting a redo is crazy. I wish I had never heard of jpouch, but I know everyone is different. [ more ]
AllyKat I too am diverted recently because of pouchitis gone bad. 15 years. My pouch is still in, how I would love to reconnect but not possible. [ more ]
Scott F There are plenty of antibiotics to try, individually or in combination. Bad side effects from one (or several) of them really don't predict anything about how well a different one willl be tolerated. At a certain point we may just get exhausted, of course, but success is more likely for the persistent person. I think *anyone* struggling to find a pouchitis treatment should probably try Xifaxan, at least if they have health insurance (it's expensive). Other options include Tindamax,... [ more ]
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J-Pouch ForumsK-Pouch Korner
Diet changed my world!
vanessavyvanessavy
winter wish I have a jpouch, but don't have pouchitis just SIBO. I shall give it a go, fingers crossed. [ more ]
vanessavy This is the kpouch section. I don't have a jpouch. [ more ]
JLH richard forgot to mention that the most critical food is refined sugar and then shell fish. both cause bleeding and incontinence. they cause inflammation, but not all j pouchers with pouchitis respond the same. you may have previously mentioned, so sorry if i don't recall, but have you tried going off sugar? i can eat certain fruits and veggies. shell fish is a strange one, but same reaction. as for vanessavy's diet i think it is important to clarify whether she has a j pouch or a variation... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Trying to conceive... Any tips?
Alicia EAlicia E
reneehow1 I would suggest talking to an ob. We tried for about 5 months, then went to an ob, they did some blood work and also checked for scar tissue, turned out I had one blocked tube, but was ovulating from the other, her suggestion was to try clomid first to release more eggs, then if that didn't work to go from there. I filled the clomid prescription , but found out that month that I was pregnant already. It took 9 months and that was with only one tube. Still it was very reassuring to talk to... [ more ]
clz81 After 6 months of no success, you should definitely be checked for scar tissue. Unfortunately, that is much more like a cause of not getting pregnant for us J-pouchers. At least you know then so you aren't focusing on an issue that isn't really an issue. Still, don't be discouraged, it took us 6 months with our first baby to conceive and that was pre-pouch. [ more ]
AmieMarie We did not use an adoption agency after researching and talking to people it seems agency's are just middle man that drive the costs up. Also we were advised by our Attorney not to do any online profile websites because that opens you up to scammers. First we had our home study done with a social worker who talked us into getting on the state list. Then we hired a local attorney that specializes in adoption that put us on his list and helped us create a profile booklet about us to give to... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Using ememas
S Sandyj
Mysticobra I found it more comfortable laying on the left side. I'm right handed. Standing was more difficult for me. It would be difficult to do it sitting on the toilet. No room to administer it. You can do it on your bed. Just put a towel down beforehand. You'll know why. That's a good idea Jan. Never thought to replace the liquid. Warm water would do just as well. Richard. [ more ]
Jan Dollar Basically you are just rinsing. It does not matter what side you lay on. Sometimes I just bend over and administer it while standing up. Plain tap water is best (the concentrated saline can dehydrate you). I dump the Fleets and replace it with warm tap water. Then I administer, repeating until it returns clear. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
j pouch in one surgery..anyone??
W worriedmom
NanJ Hi, WorriedMom, I am also a worried mom. My son was diagnosed with UC at age 13. At first sulfasalazine worked. Then about 1 1/2 yrs later he started to flare. Nothing worked- steroids, remicade, suppositories, antibiotics, diets etc, and 2 hospitalizations. He got TPN in a PICC line, then a laproscopic colectomy and ileostomy last November (age 15). At that point he still had his stapled rectal pouch. Nine days after his colectomy he needed emergency surgery for a complete small bowel... [ more ]
Jmama Hi Worriedmom, I had a CT scan a few weeks after i got out of the hospital. I Hope your son feels better. I have an appt with my surgeon today and I am going to talk to him about a reversal. I am supposed to back to work in Oct. but there is no way. My sick benefits run out in Oct, so I don't know what I am going to do. I have two girls to support. Life sucks sometimes. LEt me know how your son is doing. It's a rough things for a child to have to go through, and I am sorry he is experiencing... [ more ]
thumprhare Cherries are the devil! (For me, too) I haven't found a cereal yet that I tolerate. Seriously....cut just those out for a week and see if it helps. Sadly, I loved them....but not on the menu (for now!) [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stricture and/or blickage?
DarrenDarren
Darren Thanks Jan My CT showed no bloackage which I expected as I was feeling better the night before. The scan did however show inflamation toward the lower bowel. Thinking you are right. Darren [ more ]
Jan Dollar I did forget to mention that just because you've gone 14 years without incident, it does not mean it should be a shock or surprise to develop obstructive symptoms at any time. We form adhesion tissue within a few weeks of surgery and they remain indefinitely. All it takes is for a kink in the gut to occur and you are obstructed. Most of the time, things right themselves and you are back to your normal routine. Anyone who has had abdominal surgery faces this risk. Jan [ more ]
Jan Dollar Sounds like cuffitis, pouchitis or both to me. I am sort of surprised you are having a CT first without other symptoms that might indicate something more serious (like a high fever or sacral pain). Did you try a course of antibiotics first? Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Questran.
MysticobraMysticobra
Scott F Richard- Sucrose *is* the natural sweetener. Sucrose is just table sugar. The artificially sweetened one is called "Questran Light." [ more ]
Mysticobra It has sucrose. Next time I will ask for the naturally sweetened. I didn't know and I have two boxes so I have to use it. It is expensive as my insurance covers 3 months at a time. And yes... So far I am pleased it works. I may be able to avoid surgery along with a diet plan. I am going to see a nutritionist next week. I need help getting all the calories I need. Richard. [ more ]
Scott F Like psyllium, Questran is a solid material (in tis case a resin) that bind with all kinds of things (including water and medications) and takes it all for a ride. You're describing a normal mechanical effect. I'm glad you're seeing good results. Be careful to space any medications well away from Questran doses. Are you using the artificially sweetened or the naturally sweetened? [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-Pouch severe reaction to Amoxicillin, will I recover?
RockoRocko
Rocko Hi, thought I should post a follow-up The symptoms eventually got under control with help from the steroids. I managed to taper to 30mg/day prednisone (plus the budesonide), while also taking VSL #3, and it made the diarrhea mostly go away. I then tapered down to 25mg pred/day and after 2 days the symptoms have unfortunately started to come back. The symptoms also came back when I tapered from 40mg to 30mg of pred, and then things got better again. I am hoping that I can stay at 25mg pred... [ more ]
Rocko Thanks for the info and the laugh, Scott. I've started taking immodium, taken three so far today. It might be helping a bit. [ more ]
Scott F For many (most?) stool tests a liquid sample is best for ensuring that you'll find what you're looking for. I don't know if this applies to C. diff tests, but it's true of other infectious agents ("ova and parasites"). Many years ago when I was probably first developing IBD I was sent into the city (New York) from the suburbs to get a "proper" version of such a test, then performed by the health department. The first step was to drink a strong laxative, followed by sitting around in a shabby... [ more ]
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J-Pouch ForumsGeneral Discussion
Rectal bleeding with j pouch
A ams
ams Thanks so much for sharing it does make me feel better. It really scared me. [ more ]
Elisa W It sounds like it could be cuffitis. Your doctor will be able to tell--good that you have an appointment. [ more ]
Ikh I advice not to worry: the first time I had bleeding I was quite scared but not too worried, then it worsened and one night I began to have MASSIVE bleeding (it was 9 months after takedown) and I went with my feet to ER, then hospitalized for some days. Intravenous antibiotics (flagyl and ciproxin) eliminated the bleeding and I am good since then (I still bleed sometimes, but only if I strain, moreover I have a light chronic pouchitis - crp levels are somewhat always a bit higher than normal... [ more ]
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J-Pouch ForumsGeneral Discussion
Decision Made
K KonaBlue561
Elisa W I agree that you will feel so much better, even if you have the bag. You'll get used to it quickly, and it's so much better than being sick! I was so sick before I had surgery, and while I'm really happy with my j-pouch, I was fine with the bag too. I feel so much better. Best wishes! [ more ]
JKC You will be so happy with your decision. I did not fight it as long as you did because mine got out of control and it was emergency surgery, but it is so great to not feel sick. The bag is not great, but much better than feeling sick. I know you will do fine, good luck! [ more ]
KonaBlue561 My surgery is scheduled for October 14th. He explained the risk that I might not be able to have a pouch due to my previous surgery. He's not sure what condition my insides are until he gets in there. He went over all the usual risks with surgery in the pelvic area...impotence, ejaculation issues, bleeding, infection and a few more on the list. I'm prepared to accept a bag as a permanent option if it comes to that. I can't keep living how I am at this point. [ more ]
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J-Pouch ForumsGeneral Discussion
liquid vitamins.how do you know if helping or working?
PouchomarxPouchomarx
Scott F My rationale for a multi-vitamin is that it takes an enormous amount of vitamin D to keep my blood levels up. I don't know why my absorption would be impaired, but it seems to be, and I'm *guessing* that other nutrients might be similarly malabsorbed. For about a week prior to surgery, though, you probably should stop the supplements, unless your surgeon tells you otherwise. Fish oil in particular can affect blood clotting, but you really need things working close to factory specs during... [ more ]
skn69 The only 'real' way to know if it is working is to have had bloodwork done before you start and then again a couple months later...if not there can be certain signs of improvement such as less exhaustion, hair no longer falling out, better sleep patterns (you fall and stay asleep for example if you couldn't beforehand), better skin colour or 'clearer eyes', less brittle nails...they are all mild and very, very subjective but my personal rule is if I am feeling generally, all round better... [ more ]
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J-Pouch ForumsGeneral Discussion
Fistulotomy
JKCJKC
Megan O Great news, jkc!! [ more ]
JKC I had the fistulotomy yesterday and everything went perfect. The surgeon was happy with everything and I was discharged earlier today. I am pretty sore, but have not experienced any issues with control. This was a superficial fistula that did not require cutting much muscle. [ more ]
rachelraven Three colorectal surgeons have refused to do one of these for me. They say our type of surgery weakens our sphincters, and that it offers a high risk of incontinence afterwards because of that. Let us know how you do after. Also, what type of fistula do you have? Mine is a common simple intrasphincteric one "at 7 o'clock." Does not involve my pouch. I have had a seton off and on for over 2 years. [ more ]
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J-Pouch ForumsOstomy & Skin
big leakage problems
DH Donna H
Donna H For some reason i am going on my 3rd day today. I've done nothing different and no leaks. I wonder if diet has anything to do with it. [ more ]
AllyKat My stoma is also an inch away from my belly button. That is not my problem, I have dips when I sit at the 3 and 9 o'clock position. My leakage is under the flange, only once going onto the paper. I too have no idea how to stop it and the only way I know is when I change, thus doing havoc to my skin. I thried the rings the last time, everything seemed good, waited 4 days and when I took it off, stool under the flange on the rings! [ more ]
Donna H Lambiepie, I had my surgery just about two years ago out of the area so it is not easy to get an ostomy nurse. I have talked to many in the past and was in the hospital for an ostomy revision in May actually. My stoma had retracted on the bottom so it was flush with my belly. It took awhile to heal and it was better at first but now problems again. I am going through so many supplies - it's crazy. [ more ]
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J-Pouch ForumsGeneral Discussion
Another Question, I'm sorry!
NS Nora S.
skn69 I always had bladder sensitivity post op...with my 1st pouch surgery they did a contrast study at 30 days post op because I was dribbling too and they were afraid that something was going on...it resolved itself (it was often the irritation from the catheter being in place for so long). Now after over 15 other pouch/abdominal surgeries I don't panic...it is usually resolved within a few weeks...if not, I start with an ovule (the OTC stuff for mild irritations/yeast...) I then move to... [ more ]
Jan Dollar AZO might help. All opium products are prescription only. If you want to try MJ, I recommend vaping. Quick action like smoke, but without the smoke. Edibles are more long lasting, but hard to tell what the best dose is, because it takes so long to take effect. But, be sure to keep your surgeon in the loop. When I had serious tailbone pain with sitting, it turned out to be a presacral abscess. After a month of this pain, I spiked a temp of 105, landing me in the hospital for two weeks. Your... [ more ]
Nora S. No infection, just the aching constantly. I've noticed it's painful to sit, I have to be very careful to just sit down. When I do urinate I don't feel as if I'm ever done, I can sit there with little dribbles and then the pouch will start and I have the foggy liquid coming out. I can hold both the urine and the pouch, but the more I hold the urine, the more it hurts to go. No pain with holding the pouch. Can I get over the counter anti-spasmodics for the bladder, like AZO or should I avoid... [ more ]
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J-Pouch ForumsGeneral Discussion
METAMUCIL REVERSE EFFECT??
bederyparisbederyparis
lclassen Metamucil is my saving grace. I have been on it daily for over 15 years, and I refuse to go a day without it. I even take it into restaurants if I have to. It has kept me "regular" and i swear by it. What works for me is to mix just 1 tsp with a little ice, about 4 oz of very cold water, and 8 oz of orange juice. Then I drink that while I eat my breakfast. And, right now, I'm also taking VSL #3 DS, so I just add that right in... I jokingly call it my morning cocktail. My nurse did tell me... [ more ]
rachelraven It made things too thick for me after takedown, so I never used it. Never needed it. [ more ]
CeeeeCeeee My gastroenterologist told me that Metamucil is a regulator. It can help to decrease or increase B.M.s. I use it when I am feeling "constipated". I didn't start using it until about a year after takedown. I just reintroduced foods and liquids very slowly and methodically. [ more ]
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J-Pouch ForumsGeneral Discussion
Disconnected pouch still sick
AllyKatAllyKat
AllyKat Thank you Jill, we have spoken before on and off the years. You were the original poster child. I'm so glad things worked out for you. I'm seeing my GI at the end of the month. My surgeon thinks the pouch could still be inflamed. I'm not doing well. [ more ]
JillM Yes. I had the pouch disconnected (i wanted it removed and surgeon convinced me to keep it in). Not only did I continue to have pouch issues, I developed additional issues - lightheadedness, dizzy spells and some others. I continued to have pouchitis with the pouch disconnected. I went 18 months with the disconnect then had the pouch removed. 12 years later - post pouch removal - not one GI problem (except if I get a stomach bug I need IV at the hospital to rehydrate). I haven't even seen my... [ more ]
AllyKat What did they do for his pouchitis? Is he having the pouch removed? So sorry he has issues as well [ more ]
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J-Pouch ForumsGeneral Discussion
Travel Question - Meds
SpookySpooky
Spooky Thanks again for all the tips. I've decided just to take the essentials as going without a few of the supplements for 5 or 6 days shouldn't be a problem. Magnesium, turmeric, calcium and iron are divided in pill boxes. Align is in the original blister pack. I'm taking the imodium in the original container and I've got Tylenol (clearly stamped "TYLENOL" on each pill) in a ziplock bag. Prescription allergy meds are in the original bottle. Hopefully I shouldn't have an issue. It's funny. I used... [ more ]
CeeeeCeeee The only time I had a problem bringing vitamins/supplements into a country packed in those weekly distribution containers was when I arrived in Tokyo! I decided that from then on I'd carry the original containers as well as the weekly/daily containers. [ more ]
CTBarrister jaypea, You are correct about transport across the border, but I am told by a Canadian friend that it is "quasi-legal" if an American mails the seeds across the border to himself at a designated address or to a designated third party. What he can't do is transport them across the border himself. And that is what he apparently did- he mailed the seeds to someone who grew the seeds for him in Quebec. I assume he used no return address or bogus return address. If it gets to where it is going no... [ more ]
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J-Pouch ForumsGeneral Discussion
Diverted for pouchitis, going back to pouch?
AllyKatAllyKat
Pouchomarx i had diversion pouchitis a few times since going back to ostomy a year and a half ago due to a leak, getting a jpouch redo in 6 weeks. [ more ]
dgtracy I had alot of issues that required a diversion for awhile. when i went back to my pouch everything was great for a couple of months, but then i had a stricture form and just spiraled after that to different issues. [ more ]
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J-Pouch ForumsGeneral Discussion
Chronic Pain
P phonix2g
Pouchomarx i am taking low dose oxycodone for intestinal spasm pain as needed. I cant take the antispasm meds due to horrible blurred vision. I see pain mgmt every 2 months. I had my surgery 2008 but many issues in past few years so back to ostomy over a year and a half ago. Scheduled for a redo in 6 weeks [ more ]
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J-Pouch ForumsGeneral Discussion
DMSO
HockadooHockadoo
rachelraven My only experience with it is that bone marrow transplants use it in the marrow being transplanted so the blood cells don't crystallize. This causes the patient to have that DMSO breath (always smelled like creamed corn to me; some say garlic). Never even heard of it for the use you're saying. Interesting. [ more ]
Scott F DMSO is dimethyl sulfoxide. It's a solvent quickly absorbed through skin (along with whatever other crap is on your skin). It would never be used, I think, for post-surgical adhesions in the abdomen, though it might be used by some on the other sort of fascia "adhesions" non-surgeons sometimes talk about. It certainly can work as a local pain killer, but there are plenty of issues (and drug interactions) with it. I'd be astonished if it did anything for strictures. [ more ]
dgtracy what is DMSO? [ more ]
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J-Pouch ForumsGeneral Discussion
I hope someone can help me. Im so confused
dgtracydgtracy
rachelraven I have heard of that squatty potty. I don't need it; what I meant was the angle of sitting in the toilet vs sitting in the bath, where the hot water hits right at the anus, that's what relaxes things so they pass easily (when I've had issues). Which reminds me: it's a Canasa night! [ more ]
CeeeeCeeee Years ago when I was experiencing problems emptying I would stand in my shower and with the shower arm I would aim the spray of warm/hot water up my anus. This relaxed things enough that everything emptied! Cleaning up the shower was easy with the shower head and cleanser. It felt like such a relief! [ more ]
Dog rachelraven: Have you heard of squatty potty? If you think it is something about the angle, my friend swears that this device will help. I've not tried it though http://www.squattypotty.com/ [ more ]
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J-Pouch ForumsHelp! Need advice now!
A New Level of Tired
linalina
lina Hi all! Thank you so much for your replies. I wanted to update and share what I found out. I did two things: 1. I added supplements: a sublingual b-12 supplement, a turmeric supplement, and an astaxanathin supplement (all organic/gluten free) to my daily supplements and vitamins. Ok, sorta helped. I'll keep that up. 2. Then I finally did the thing I didn't want to do before because I'm silly. I cut out all gluten. I've burped my whole life, all the time. I stopped burping in one day. My... [ more ]
skn69 I laughingly say that it is a lifestyle choice that I did not choose! I get so tired that on my way home from work (in the subway or tram) I just want to lay on the floor and cry. I used to take naps in my boss's car when I was a student working in a souvenir shop in Paris (led to all sorts of strange situations...it was parked in the street in front of our shop and tourists would constantly knock on the window to see if I was alive or call the beat cops to check on me...they knew me by then... [ more ]
CeeeeCeeee When I am dehydrated I have the same symptoms you are describing. Actually, at those times I need more than just water. So, I begin drinking Pedialyte. I'm not crazy about Gatorade. When I had an ileostomy I used to head to the ER for an IV to hydrate me. Haven't needed to do that since takedown 12 years ago. Hydration made a real difference for me! Best wishes! [ more ]
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J-Pouch ForumsGeneral Discussion
Antidepressant for man with jpouch?
D DiarrheaKing
DiarrheaKing Yes...it is an antidepressant so that is a benefit, but I was originally prescribed it because there is anecdotal evidence it can help with IPS...so my doctor said. One of the side effects of this med is constipation, so I'm guessing that's the reason why it's used. Thanks, [ more ]
dgtracy i dont want to threadjack or throw things off course but DiarrheaKing you said amyltriptaline is for your irritable pouch syndrome. i take it as well but when i was given it, it was because of sleep issues, im assuming IPS is where your going alot right? You could message me if you like to keep your thread on track. [ more ]
Jaypea When changing antidepressants you must do it carefully, slowly, and under the care of a physician who is familiar with the drugs. It takes a good 6-8 weeks before a new anti-depressant will start to work and it could take longer to get the dose right for you. Please be very careful when you do this. You might also like to consider counselling or therapy while you are in the midst of this change. [ more ]
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J-Pouch ForumsGeneral Discussion
Falling down
skn69skn69
Jan Dollar I haven't fallen since I started using my walking stick. It is a trekking pole with a cane grip and shock absorber (so my arm and shoulder joints don't hurt more). It is like this one. http://www.amazon.com/Chinook-...Hiking/dp/B00BNUGCAI PT didn't do much for me, but maybe it will help you. It seems that you are very active, so I doubt it is deconditioning. Jan [ more ]
skn69 Thanks for the input guys, My doc gave me a script (that is how it works here) for 30 sessions of PT for balance and to re-educate my walking/gait/hips...hopefully that will help. What doesn't help at all is the darn paving stones all over the place (wanted to use a nasty word but it would have been sensored)...the ground under and around them sinks or collapses and you get this wave of uneven stones that are just laying in wait to trip you up...hubby is using a cane and he is even more... [ more ]
JLH sharon so sorry to hear about your fall. i refer to them as 'free bone desity tests'. congrats, you apparently passed this one. as for PT, i can say that it has great merits for both joint stability and balance--so long as you diligently do your exercises and have a good PT. i've had both hips and one shoulder replaced and have significant spine problems and other ortho issues. if it were not for pt and my exercising close to 2 hours a day i'd never would have gone sailing and biking this... [ more ]
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J-Pouch ForumsGeneral Discussion
Wet wipes on the go? (no pun intended)
aka KNKLHEADaka KNKLHEAD
Mysticobra Originally Posted by Scott F: Mysticobra, I've noticed a similar effect. If I'm focused on other things I may not even be aware of my pouch for hours, but when I get home it's often really time to deal with it. Hey Scott...... Ya it is the weidest thing isn't it. Must be because we focus on work or driving and completely take our minds off it. Bad this is... Example... I start work at three pm.... I eat my dinner at five thirty pm and that puts it all in motion. It's like clockwork everyday. [ more ]
Jmama Buy whatever baby wipe is softest, and rinse well with water. Stuff a few in a ziploc baggie. Voila! [ more ]
Scott F Mysticobra, I've noticed a similar effect. If I'm focused on other things I may not even be aware of my pouch for hours, but when I get home it's often really time to deal with it. [ more ]
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J-Pouch ForumsGeneral Discussion
Adhesions
dennyp3dennyp3
Elisa W I think Scott describes the process well. My surgeon cut/detached my adhesion from my pelvis and said he "straightened out" the intestine. Luckily, he knew where it was from a CT scan, so he didn't have to open me up to find it, and he was able to do it laparoscopically. [ more ]
Scott F This thread has gotten a bit confusing, partly because we've called some very different things by the same names. Jan and thumprhare have helped shed some light on this. When surgeons talk about adhesions they're just about guaranteed to be talking about fibrous connections of scar-type tissue in the abdomen that attach things together that shouldn't be attached - two different parts of the bowel, for example, or part of the bowel to the abdominal wall. These are a common consequence of... [ more ]
sweetpeasmom Dennyp3 said: The surgeon spent 4 1/2 hours unraveling my adhesions. You can't cut them, it just creates more adhesions! Can someone explain what unraveling means? I thought adhesions were thick fibrous bands of scar tissue. How do you unravel them? Is this a common treatment? Is it only done during "open" surgery? Thanks! [ more ]
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J-Pouch ForumsGeneral Discussion
Osteoporosis and radiation therapy
MizchelleMizchelle
Jan Dollar Your biggest factor is likely your family history, which you cannot change. There is no reason not to resume your active lifestyle (whitin reason), as weightbearing exercise is the most important thing you can do, other than making sure your vitamin D levels are good and you get adequate calcium/magnesium. Prescription meds are a good idea too. Try not to worry about what has not happened yet. Jan [ more ]
Scott F That menopause probably isn't doing your bone density much good, either. Have you started on one of the bisphosphonate medications (like Fosamax)? They take a while to work. That's what I took years ago when I had steroid-induced bone density issues. [ more ]
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J-Pouch ForumsGeneral Discussion
Still asking the same question
J JHendrix
GraceB I also had a pimple like cyst on vagina and I tried to heal it myself. After it popped I noticed That three more popped out and they were vey painful and treated those myself. I find it hard to discuss these things When I went to gynecologist I mentioned it to her she said it was most likely ingrown hair. I am now reading posts and thinking is it something that I should tell my gastro about? [ more ]
CeeeeCeeee It sure sounds like it is more than just a Bartholin cyst. I think it is a good idea to let your colorectal surgeon explore the possibilities and suggested treatment. Best wishes. [ more ]
Scott F Patrizia, it may be useful for you to know that a hemorrhoid *is* a kind of varicose vein. They can get hard when the blood clots (the hemorrhoid is then called "thrombosed." I don't know if that's what you have, but maybe this information will help a bit. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Procedure for fistula/ abscess yesterday need advice :)
C Char-muir
Scott F PMs on this site are called "Dialogs." The easiest way to start one is to click on the person's name, and select "Start Dialog" on the right side of the screen that pops up. The easiest way to see if you have any new messages (and to check them) is the "Dialogs" button on the top, right of any of these Forum screens (you have to scroll to the top). You can set notifications to email you when you have a new message, but the button turns pink in any case. [ more ]
Char-muir Thanks for all your replies, its good to know tht I'm Not tht only one with these issues and also tht there seems to be quite a lot of options available. I'm from the UK and have had my surgeon since I was 14 (nearly ten years) I probably wouldn't trust anyone else as he has performed all my surgeries so far. He contacted me a few days after the procedure I had to clear infection from behind the fistula and he said tht the incision he has made should heal but I will still be left with the... [ more ]
Uc-Danielle Hi! I have been going thru for 3 years now so you can private im if you want to discuss things further [ more ]
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J-Pouch ForumsGeneral Discussion
Paranoid now - abscess or fistula?
D DeathStalker
virginiac So Deathstalker... what was the outcome - ?? did it heal?? Ive just had another seton drain put in oh well know what to expect these days Cheers from down under [ more ]
DeathStalker Yes, Dan, you are correct. I was just surprised that they saw no tract because after two visits to the doctor to excise the abscess, it was still draining. I would have put money down that it was a fistula but when the surgeon went in on Thursday to do an exploratory procedure, he never found any tracts so he just removed the entire abscess. I hope he's right in that this is all there was. Would hate to have to go through all this again. [ more ]
Pouch4Wf I might be naive, but don't they need to identify the fistula tract before inserting a seton? Hopefully, they were able to visualize and explore the area enough to be confident that there was not a tract. Dan [ more ]
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J-Pouch ForumsGeneral Discussion
Thought i had a stricture but i did not.....
dgtracydgtracy
dgtracy This is so weird. I was scrolling through looking at posts and I must have posted thiswhile still having anesthesia messing with me as I don't remember doing this. I made a new post for issues that are still continuing. [ more ]
Scott F I've been saying for a while now that I think taking psyllium with a small amount of water is a bad idea. IMO it should be taken with plenty of water, and in my experience it works great that way. [ more ]
Jan Dollar As the saying goes, "the proof is in the pudding." Even if it seems improbable, if the doctor finds this stuff is not moving through, then that is the reality. Each of us responds to what we take in as individuals. The trick is in finding what works for you and that perfect balance of thick enough to prevent butt burn, but not so thick as to get clogged up. It is a trick because there is no "rule book" that works universally. Jan [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Trouble emptying the j-pouch
J jsant008
mgmt10 You may have a stricture that needs to dilated. I dealt with one after my takedown surgery. Ask your dr. [ more ]
DiarrheaKing Hi there, I too have a j-pouch and strugle with this. What helps me immeasurably now is to have a bidet. I used to use a hand held sprayer but this is much better. It actually gives me an enema when I use it and that helps me to empty completely. Mine is like this: http://www.amazon.com/gp/aw/d/B003TPGPUW?vs=1 They can be a little hit or miss...I have one of the exact same in my second bathroom that doesn't squirt as high of pressure and is not as effective...but still much better than... [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
Butt on fire
N New_Life
CeeeeCeeee What are you eating? At your stage of recovery I was gently introducing my connected J-pouch to simple bland foods. After 6 weeks I began introducing one new food at a time. This regimen was not easy because I had chosen to keep my temporary ileostomy for an entire year and during that time I could eat and drink everything. However, my regimen paid off. Within 9 months to a year I could once again eat/drink everything. Best wishes! [ more ]
SandyS I'm gonna put in my vote for calmoseptine. Wash dry cake it on! Wake up with zero butt burn. It will ruin any underwear tho. FYI [ more ]
Mysticobra Lidocream. I just got some and have not used it yet. Will keep you updated. I will only use it when it is extremely irritated. Richard. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
How many j pouchers are out there?
S Salmak
lablover My husband had his done 20 years ago at GW. [ more ]
lauren972 Do you have an update on active members now? I saw the post was from 2 years ago (14,200) so was wondering if anyone know she.. [ more ]
Indy_Dave Being that I work where there is a public restroom in a busy place - it sounds/smells like there are MILLIONS of J-pouchers visiting "my" bathroom every year... Sometimes I just want to ask who did your surgery and did you just pushed out a massive blockage just now! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Adoption and medical history
S SarahG
AmieMarie I have scar tissue in my fallopian tubes as well. My heath history did not effect our adoption one bit. So no need to worry. It's so great not having to worry about my Daughter having UC like me and my Mother! [ more ]
Sonja6 Yes, thank you very much for posting this! I am a widow 4 years and have had no desire to casually date!! But want very much to have a child and have a family regardless! I refuse to settle just to have a child. That isnt love!! But I have a huge fear that my medical problems will come into question. Especially since I would be a single parent trying to adopt. Thankfully I do work for a great company that does have a adoption program. I know that will be my plus. I have been with them for 7... [ more ]
JMarie Thank you for posting this question. My husband and I are also thinking of adopting. It is encouraging to hear of others who have adopted successfully. I am pretty scared to have a natural birth and don't think I want to continue my genetics. We will be beginning our application process in the coming months. Now, just to keep the pouchitis happy. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J pouch interstim Medtronic bowel therapy
C Cozy52
SandyS Ps I'm not real sure I'm following this thread so wanted to post again cause I unclicked link. Now I think I am. 😁 good luck I'm not super tech savvy [ more ]
SandyS Hey I can answer this one! Lol I had UC had my Jpouch in 2000. I had several fistulas and every complication known to man. I've had 20 plus surgeries but after YEARS of incontinence my dr suggested interstim. I had my first device implanted nov/dec 2012. It was life changing! I've read horror stories on another site about pain at implant site and nerve damage but I only had 1 time that was wonky about a year after implant and pain was so bad couldn't walk. I turned it off. Saw my dr. Waited... [ more ]
Cozy52 My interstim is bowel incontinence. It is pretty new around here and can't find anyone who has had both and I am going through the trial Part now and in 7 days I may have the permanent one and just wanted total with someone who has had both and wondered how it has worked for them. I have researched everywhere I can think of and reached out to this but no results yet. I would really appreciate it for any suggestions or help I can get. Also, I am interested in anyone who has bowel incontinence... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bad gas pains
Rae26Rae26
LisaTX USA I suffer from SIBO, and now take peppermint oil capsules several times a day. They really work! [ more ]
Rae26 Thank u so much Scott:-) [ more ]
Scott F There's lots of advice in prior posts. Don't eat any solids. The most common risk is dehydration, if things stop up completely or you stop drinking. If your pee starts to get dark or stops completely, you need an IV. If you start to vomit or the pain becomes extreme it's time to visit the emergency department. Good luck, Rae! [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Pregnancy and recurring pouchitis
Krista_MarieKrista_Marie
Vandal-Cane Glad you are doing better. To answer your question about probiotics... I have a 4 year old , 3 year old, and 3 month old. I started taking VSL#3 probiotics since the baby was 1 month old. It cleared up the pouchitis after child birth and got my system back on track. It is ok to use when nursing too and I think it helped the baby get good flora in her system. It is expensive. I got it on amazon. I only used it for about 2 months. It is only for people with uc or crohns. Good luck! [ more ]
Krista_Marie Update: I was admitted to the hospital Monday but great news came out of it. I do not have pouchitis. It's Irritable Pouch Syndrome, which for those of you who don't know is pretty much like it sounds. Its like IBS but in the J-pouch. This condition is treatable with a low dose of antidepressants which actually work in the small intestine to slow down the nerve impulses that trigger pain. I am so relieved. Hopefully this will be the end of hospitals every month and I can go back to enjoying... [ more ]
clz81 Hi Krista...just wondering how your scope went and what the verdict was. Hope all is well now! [ more ]
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J-Pouch ForumsGeneral Discussion
Celiac disease question ?
PouchomarxPouchomarx
Jan Dollar Celiac disease is gluten intolerance. What sets it apart from a gluten sensitivity is that there is damage to the intenstinal villi from the inflammatory response. A non-celiac sensitivity is much more common and does not damage the intestines. http://www.celiaccentral.org/n...ion-and-definitions/ Either way, intolerance or sensitivity can develop over time. Of course, you can self test by going gluten free to see if that improves your symptoms. You just can't do that shortly before testing... [ more ]
Pouchomarx I'm pretty sure it was a blood screen in 2008. Jan, you say gluten "intolerance" can develope over time, cant Celiac as well? If you have the scope and biopsy done and it does not show celiac, cant it show up later in life still? and who knows if i have symptoms? lol. with all my surgeries and on and off pain, I would not be able to tell if it was from something i ate or just my normal aches and pains..lol [ more ]
Jan Dollar Gluten intolerance can develop over time, so if you think you have developed new symptoms since you were last tested, it makes sense to have the screening bloodwork done. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
To: Jan and Barrister
L LisaT
Jeffsmom Lisa, my son was diagnosed with PSC in May. If you need any help, let me know. I've received a good education in the last 4 months. Let me know if I can help. dianne [ more ]
Jan Dollar Yes, often with pancreatic cancer, there are no obvious risk factors, just like with UC. Could be environmental exposure. Impossible to say. They still know very little about it. Hard to study a cancer that so quickly kills. Jan [ more ]
CTBarrister Jan, My grandmother who died of pancreatic cancer did not smoke, have pancreatitis or have any family history of cancer nor did she have autoimmune disorder/IBD. It was widely speculated within the family that her work experiences in a factory during World War II which manufactured munitions exposed her to carcinogens which caused the cancer. Both she and a brother who worked in a similar factory which exposed him to assorted carcinogens died of cancers, but their other 4 siblings, my great... [ more ]
See all 5 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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