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J-Pouch ForumsK-Pouch Korner
Persistent Sinus Tract Wound
FM Former Member
JaniceM Oh, it was called a fistulagram. Even though they did not suspect a fistula, the surgeon wanted to be sure what was going on. It was a tiny needle the tech inserted very very gently, just enough to get the tip in. I still have my spincter muscles so squeezed them to keep it in (plus he taped it cuz he knew the opening was so small and not deep) through the 5 minute test. [ more ]
Former Member Thanks Janice ! I see my doctor today & will def'ly ask for an X-ray and go from there. Even though I'd never wish these problems on anyone, it is reassuring to know I'm not alone. I may be picking your brain a tad more after I see him :-) Thanks again, Ali [ more ]
JaniceM Ask away, sure! The 2nd time, they put a balloon type them to keep a tiny bit opened while it healed. It never closed up completely even though you could barely put the tip of a q tip in it. This last time, the colorectal surgeon cleared it out and no balloon. But, it took time to heal as I was older with more health issues. But, once it did, I was so happy. No more pain or discharge. If the surgeon completely redos it, it can take several weeks to fully heal. But each week so much better. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pouchitis AND irritable pouch syndrome
C CaLiMa
Jan Dollar Yes, same Rx as IBS. The antidepressants are not for depression, as typically, subclinical doses are used. The idea is that they alter your "gut awareness" so that you do not sense every twinge that goes on. My understanding is that the tricyclic antidepressants (like Elavil) are used for IPS/IBS, not SSRIs. Could be wrong though. Also,antispasmodics are used to reduced the cramping pain. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
animal foods?
G Guest
CeeeeCeeee Early on, after takedown, one of my J-pouch's favorite meals was a McDonald's cheeseburger and an order of French fries. I think I even had a small diet Coke! Go figure! [ more ]
KiwiPoucher Just shows how there doesn't seem to be a normal. Eggs give me immediate liquid stinky output that shoots through. I have been re-examined by my surgeon who says there is no stricture or abnormality there. Does anyone else out there still have the problems Chasingtime has? Wondering whether I should mention it to my Gastro Doc next visit. As I said, I assumed this was my new post pouch way of going to the loo. [ more ]
Disneynut The protein that kills me is eggs. I have the same symptoms as you, straining, etc. I can have things with eggs in them, but not alone. I was absolutely fine with eggs before surgery so it's strange. I love them, but it's not worth it. [ more ]
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J-Pouch ForumsGeneral Discussion
Best Surgeons in Philadelphia Region
S surfsup88
Megals My surgeon was Mark Pello out of Cooper University Hospital. He is a great surgeon and I'd definitely recommend him to my family if they needed his services. [ more ]
mgmt10 My surgeon was Dr. Scott Goldstein out of Jefferson University Hospital in Philly. He made me a great j pouch and all has been fine since my surgeries. I would highly recommend him. And the care I received at Jefferson was top notch....I was very impressed with them. [ more ]
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J-Pouch ForumsGeneral Discussion
2 vs. 3 surgeries for J-Pouch
U UCWarrior2010
Scott F Your plan makes sense to me. Choosing the right surgeon is very, very important. [ more ]
UCWarrior2010 It seems like there are good reasons to get a 2 or 3 step surgery. A 1 step procedure is just not an option in my case. I guess I will choose the surgeon that I feel most comfortable with taking into account his experience with the jpouch and whether I can afford him. Once again, thank you for your inputs. I truly appreciate it. [ more ]
KiwiPoucher I had the one step procedure, but becuase I developed sepsis (which can be the case in any surgery) I then have to have 2 further sugeries, a temp-ileo and takedown. If I had to make the decision today, I would definately still go for the one step, because I can see that although it is a huge operation your new plumbing starts adapting from day one. If I hadn't had complications I would be 3 months further on now with my recovery. I am also getting obstructions around the ileostomy site... [ more ]
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J-Pouch ForumsGeneral Discussion
too many small poops a day
fqfq
gleam I take immodium right before bed and usually only go once before work and right after lunch. Although, I probably go 10 times between 6pm-1am. Too much immodium backs me up. I like it loose and poopable. [ more ]
JeffDC You might have a stricture. Multiple small poops is the sign I have when my stricture shows up. [ more ]
Sonja6 oh my goodness!!! I laughed so hard to this post I totaly know what your talking about! Drinking lots of water actualy does help alot. But still i dont have long periods of time were i have "big" poops. Maybe like a whole day. But thats huge But eating anything processed gives me th ekiller small poops [ more ]
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J-Pouch ForumsK-Pouch Korner
No energy!
EricEric
JaniceM Eric, the percocet alone can effect your emotions. I'd switch to tylenol with codiene if you are still having some pain. And, it helps slow down the poo flow. It seems to not make me as emotional as it's not as strong. feel better. [ more ]
skn69 Eric, I could create a group thereapy session for hubbies of K pouchers! Mine has lived through me, repeated pouch surgery and menopause all at once! Talk about a Nobel prize for Zenitude in a supporting role for post-op surgical nutcases! There are nights I am sure that he wished he had either put a lock on the knife drawer or on the pharmacy cupboard!...Post op is psyco-melo-drama in our house...I am the strong one going into the surgeries, he is the wreck...coming out I am decided and... [ more ]
Eric PS - my emotions are STILL all over the place, guys aren't suppose to cry, but when I was watching the tragedy in Connecticut unfold, seeing all those poor poor families destroyed by the actions of one psycho, I fell apart, I had to shut the TV off, I just couldn't watch any more. Normally, I'd just be sad, but I would have never fell apart like I did, what the heck? What's the connection between a K pouch surgery and my wild emotions? My family doctor attributes it too years of pain,... [ more ]
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J-Pouch ForumsGeneral Discussion
Lest We Forget......
K KiwiPoucher
mad hatter You are not alone in feeling sorry for your self as it has a place in the healing process. I gave up so much of my freedom and career because of UC. Three years after getting my J-pouch Im still trying to find a happy medium. But one thing I know for sure is that my worst days that I now face are nothing like I faced before, so with that as my shield I move forward. It may never get any better but it certainly could not be any worse. [ more ]
KiwiPoucher Thanks for your heartening words Sharon. I think you are so right. It is almost moving from the fighting just to survive phase into the acceptance phase. Also like when you go on a holiday after a hard years work and your body just gives in and you get a bug or a cold without fail. I have got back to my baby diet, think a lot of it is the amount of fibre I eat and making sure it is totally chewed. Thanks again. Caroline [ more ]
skn69 Hi Kiwi, I am so happy to hear that you had such great improvements post op...And know that the sudden end to those improvements and the onset of complications can send you into PTSD...you and your body are finally catching up with each other...your brain is processing everything that has happened to you and you are starting to spiral downward...it is very normal...now that the worst is over you have time to stop and think and it is a very difficult process...you might wish to read some of... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
fistula or no fistula that is the question
N NJK
lixxie Hi NJK, I had a similar story earlier this year, only my symptoms were not 'monthly'. Had fistula-like symptoms, but EUA found nothing. Surgeon dismissed it as he couldn't see anything. Told me to come back if I have any more problems. Ultimately, the symptoms have settled down to be light-to-non-existent, and because my pouch is pretty well functioning, I'm going to leave it be as a very minor inconvenience. From what I've read (and I could be wrong) there does not seem to be much in the... [ more ]
n/a NJK, so sorry to hear you're experiencing these symptoms. SF is right - passing gas and possibly stool from the vagina is NOT normal. Interesting that yours occurs only after your period. I don't know what that would mean. Fistulas are sneaky and often cannot be seen on scope. They will better show up on an MRI. Even Dr. Shen had to work hard to find the opening inside me (but find it he did). I'm glad to hear you will be seeing him. He will do everything in his power to help you. Long story... [ more ]
Sierran Farmer NJK, in my own experience, fistulas sometimes open up a tiny bit and can mostly remain closed until something causes the need for another escape route for stool. If you have any particular pressure between your pouch and your rectum, such as from bearing down or from some measure of constipation (relative) that differs from normal consistency, it might cause a fistula that's present but not normally needed to open a bit more such that you have the symptoms you describe. At your period, you... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abscess?
rachelravenrachelraven
rachelraven Thanks. I'm still worried. I'm worried, what if the anal area turned "cancerous?" I know that it's probably not, and that I'm likely overreacting, but with the anal cuff left, I guess there's always that chance. The one doc told me not to think that way, that he really feels it's an early-on abscess. But I hope we can sort of sort it out. It's not really doing anything right now... not getting smaller, not getting bigger. I've tried hot baths with epsom salts, but they do nothing. From the... [ more ]
Ginabello I had a abcess in the same area and had surgery 3 months ago and packed.. I get a hardening but it's inside now.. It stresses me out but when I go see my surgeon he says its not infected.. It gets soft and for a short time and then grows again.. Does anyone have any advice for me? [ more ]
Jan Dollar Hot sitz baths can help an abscess mature, so it is "ripe" for incision and drainage. Antibiotics help keep it contained. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
bloating, gas pains, no poo and no farts! help!
stephalynndstephalynnd
Changingground Good to hear, Steph. Ileus is a tricky thing. I've had three, the latest lasting 22 days (N.G.tube for 18 of 'em) and learned the importance of decompressing your gut. Glad to hear that things have worked out. [ more ]
stephalynnd thanks for the advice. my bowels were indeed asleep for 9 days. they woke up yesterday and i let out lots of gas and had to go to the can about 9 times. nothing yet today but it's in there. i am very pleased that i have no urgency. (crossing fingers it stays that way) when i finally go to the toilet lots and lots comes out like it was a full pouch. [ more ]
liz11 steph if you so soon after takedown, not pooping, and vomiting... you need to get to the ER immediately. call you doctor while you are en route to the hospital. But you go to the ER. [ more ]
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J-Pouch ForumsGeneral Discussion
update with dr shen and B/O
R Rebe0505
Kelsie I am not sure how common it is. Yes, she used one in the morning and one at night for the most part. I asked about it being a possible cause of her headaches/nausea/vomiting and never got a response. We just decided to stop them and see, and it all went away, so one can only assume it was the cause. She is scheduled for surgery on Tuesday, so she won't be able to use them anymore anyway. She may be a rare example. She also got the "prednisone" side effects from using cortifoam which isn't... [ more ]
Rebe0505 wow kelsie not good the side effects you mention..do not know if that is common or unusual..i am not on them a week yet and i never even thought about such bad side effects..hoping that is not a factor..will keep updating...sorry it did not work for your daughter.. rebe p.s did she use two suppositories one in morning ,one at night?did you ask doctor about symptoms and if that was common? [ more ]
Kelsie My daughter used them for anal pain. They helped. However, a week or so after starting them she developed really bad headaches and nausea/vomiting every day. She went through that for over a month before we suspected the B&O. She stopped using them and after a week or so her headaches and nausea/vomiting were pretty much gone. So, yes they did help her with the pain but we are pretty certain she had bad side effects and stopped them. [ more ]
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J-Pouch ForumsGeneral Discussion
pouchitis could be bacteria overgrowth actually
R Rebe0505
Rebe0505 remember too he suggested eliminating as much simple sugar from diet as well..which as i said i have done except for raw fruits..and maybe something with a gram here or there..i also take the two most widely studies probiotics..not sure how that factors in rebe [ more ]
Rebe0505 do not know why he recommended b/o instead of lactolose...but that is what i am trying..to my amazement so far working only about 4 or 5 days now ..but promising because in past if i were off my antibiotics one day i was toast..will keep updating..this could be a breakthrough of sorts right? also not sure why b/o suppose to work but i will have to listen to my taping of our meeting..by the way it was my husbands idea to tape meeting after my exam..and it was right on mainly because i am... [ more ]
gleam This would explain why gas feels like it goes backup into our bodies because it does! [ more ]
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J-Pouch ForumsGeneral Discussion
Sudden absolute exhaustion
skn69skn69
TE Marie The insurance companies too. [ more ]
Jan Dollar Yeah, I don't understand why it is big business... Somebody's making money on this. Isn't you, isn't me, isn't even most doctors. Shareholders? Makes my head spin. It seems that the big clinic type outfits are most cost effective, like Cleveland Clinic, Mayo, Kaiser... Jan [ more ]
TE Marie I know what the costs of running medical practices are as I use to have doctors and their practices as tax and accounting clients. Before I owned my own CPA firm I audited hospitals for a big 4 firm. I've computed and worked with medicare and other insurance company reimbursements, read hospital board of director minutes, seen what the salaries are for everyone as well as recruitment costs. There are small medical practices that can't make it work with one or several doctors, because of all... [ more ]
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J-Pouch ForumsGeneral Discussion
Upcoming surgery: Advice
FM Former Member
Former Member Thanks Sharon, Jeff and Liz. These are all great ideas I've had my fair share of operations (all unrelated to UC) so I don't have much anxiety about the actual operation. Although who knows how I will feel when I'm actually there waiting for the procedure to take place. If I begin to feel anxious I'll be sure to ask for something. Thanks for the advice, I probably wouldn't have thought of that on my own. An eye mask and music will certainly come in handy. That is a wonderful idea. [ more ]
liz11 and bring music/headphones and an eye mask. As jeff metioned you will be awakened at all hours and the combo of music and eye mask can be quite relaxing. [ more ]
Jeff P. My best advice. Ask the anestesiologist to give you something to help you relax before going into the surgical room. I didn't want to think about it or be aware for my first surgery (big surgery and having an organ removed) and don't remember a thing. I was happy to have the bag removed for the take down, didn't ask for meds and was fully aware in the surgical room and was fine with it. Also, bring books, magazines or iPad to read. You will be awakened at all hours and there is only so much... [ more ]
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J-Pouch ForumsGeneral Discussion
I have discovered that I can't drink much alcohol, thank you J-Pouch?
MN Mark N
Former Member ❤️
Spooky I'm like CeeeCeee. I've never been much of a drinker, but I do notice that since my colon was removed, I get a tipsy much faster! I feel it after even 1 glass of wine. Oddly, I'm much better with beer. I don't notice much of a change with my pouch, but like I said, I rarely have more than 2 drinks, so it may not be enough to notice. [ more ]
CeeeeCeeee I've always been able to tolerate alcohol and life with a j-pouch hasn't changed that for me. However, it now takes far less of it to give me a buzz! Alcohol does not bother my J-pouch. I enjoy gin martinis and an occasional glass or two of wine. [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown Tomorrow!!
bootstrapbootstrap
CTBarrister I had two ER visits after takedown and both were caused by my own stupidity. At the 30 day anniversary after takedown I was feeling good. I was on a "high sodium diet", this due to the Pouch's slow ability to adjust to electrolyte regulatory function previously performed by the excised colon. So I decided to celebrate and have a "sodium party". I ordered a small anchovy pizza from the best pizzeria in Bridgeport, CT at that time, bought a 6 pack of V8 juice and a bag of Lays BBQ potato... [ more ]
bootstrap Haven't had butt burn yet, but have been taking preventative measures with a water bottle, baby wipes, and protective barrier ointment here in the hospital. And I have a nice bidet waiting for me at home. :-) So I'm not too worried about it. I also heard that if it's particularly bothersome, I can hop in the shower and use a scoop of Noxema cleanser to cool things down and get a good wash, so I have a blue tub of that in my bathroom as well just in case. Can I ask what specifically sent you... [ more ]
CTBarrister As you start to feel better be patient with incorporating new foods and doing so in small quantities. As your body heals and feels better there is an enormous temptation to "push the envelope" and get aggressive with culinary adventures. For the 1st month you need to take it slow and not push the envelope, otherwise you will take some trips to the ER like I did. What you cannot eat now, you will be able to eat many months from now with no problem and keep that in mind. Butt burn could be an... [ more ]
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J-Pouch ForumsGeneral Discussion
many will benefit from this...
G Guest
Guest agreed jan, was just coming back with a similar warning. [ more ]
Jan Dollar Very good resource, Tom, with lots of detailed hints, most of which have been recommended here. Nice to have it all in one place, too. Just one word of caution, though. Bowel training is intended for those with some colon or rectum still, not for someone with a total proctocolectomy (note it is for cancer patients, not UC). The ileal reservoir is not as distendable as a rectum or the colon, and does not have the same muscles, so you really cannot "train" it to hold large amounts, or contract... [ more ]
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J-Pouch ForumsGeneral Discussion
bp 80/60 pulse 68 headache dizzy etc.
G Guest
Jan Dollar There is very little nutrition in rice. Just carbs. You might do better with chicken soup with noodles or rice, so that it has balance, not so carb heavy. If you did a slow taper on the dilaudid, you should be fine. If you were having withdrawal, your pulse would be rapid with an elevated BP. Jan [ more ]
Jan Dollar Even canned chicken soup isquite nutritious? And most of us don'tneed to worry about the high sodium levels. So don't worry if you don't have time to make home made soup! Jan [ more ]
Guest jan, delaudid very slow wean. mountain, thanks. i tried white rice many times and i got badly bound up every time. will cooking it to mush help with that? [ more ]
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J-Pouch ForumsK-Pouch Korner
How old were you when diagnosed/surgery?
J Jasmine 2
John A UC symptoms, bleeding at 10 yo, diagnosed at 12, ileostomy at 20, KP at 33...3 revisions, 2 valve repairs, multiple adhesion lyses, surgery free for past 16 years... [ more ]
JaniceM UC symptoms begin at 7yr. (always had stomach aches, cramps etc. even before). Bleeding at 12yr. UC official diagnosed a week later. Ileostomy at 21. Kock pouch at 22. Etc. Chronic inflammation continued but all crohns tests neg. (but i have autoimmune issues) Chronic gastritis and GI feels it's UC related. [ more ]
Donna H Sharon, you are truly amazing!!! [ more ]
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J-Pouch ForumsGeneral Discussion
giving up at 10 weeks
G Guest
Mountain Man Hi Tom, Here's my 2 cent's worth...All of the seeking and searching will drive you crazy and make your symptoms worse. I will agree with Jan 100% that you need to end the vicious cycle. I got beat up once for saying this but I will say it again...Please give your body permission to heal. Your own body is wiser than any person alive. Listen to it! Please try to think positively and find something to be grateful for. Try to get a handle on your anxiety because it will always hold you hostage. [ more ]
Holly M I have always said our rear ends get the brunt of this j-pouch life!! Hang in there! [ more ]
bootstrap FaithnWill wrote: Sorry I didn't see this question sooner... but here is my answer: Because it is only legal in certain states, I don't know of a website that sells it. I have a medical card and get it from a collective (dispensary) one town over. If you live in an area where it is not legal, it may be difficult to get a hold of. If this is the case, email me and maybe we can brainstorm. (Email is on my profile.) [ more ]
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J-Pouch ForumsGeneral Discussion
6 1/2 years later and they found a leak....
JR Jen R
Jen R Thank you all for your comments, It's good to know I'm not alone in this. Yes, it is very hard to find anything about leaks. I am more encouraged than before and hopeful to get this resolved. I appreciate the support!! [ more ]
KimR I had the surgery in 2 steps but after the second step I had a lot if lower back pain. At first they told me it was my body trying to learn a new way to function and it would go away. When it didn't and got worse, they did a ct scan and found evidence of a leak (air bubbles and a pocket similar to what you described). I was admitted to the hospital and got a PIC. Couldn't have anything PO for about 4 weeks and was fed and hydrated through the PIC. It sucked! They hoped the leak would heal... [ more ]
Kelsie Jen, we saw Dr. Remzi. I sent you a PM too. [ more ]
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J-Pouch ForumsK-Pouch Korner
Leaking again!
EricEric
JaniceM I'm sorry Eric. Remember Tiffany had same issues with KP from Dr Cohen. She had it revised and it still leaked so she had it converted back to perm ostomy. I know that is not what you want to hear or have, but your health is the most important. You have a great relationship and otherwise happy life right? Why go through all this over and over. I understand, beleive me. But, unless you can get to the CC in the states, I'm not convinced Dr Cohen should attempt it again as you have gone through... [ more ]
Martin73 Hi Eric, I understand that you are frustrated and I wish you that Dr. Cohen will find a solution for your problem. I had many problems with my kock-pouch - it worked perfectly only a few weeks. Now I am living again with an ileostomy and I am happy. Best Regards Martin [ more ]
skn69 Eric, What did Dr C say? Please let us know. Sharon [ more ]
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J-Pouch ForumsHelp! Need advice now!
Soreness, no pain
nysnys
Jan Dollar If you have no other symptoms, I would not worry about it unless it persists a month or more or becomes severely painful. Could be anything from a pulled muscle, a torn adhesion, or even a virus attacking a nerve. If it was fibromyalgia, you'd have painful spots in numerous places. I think you'll have to see whether this resolves with time, persists, gets worse, or new symptoms develop. In the meantime, you can use a heating pad and over the counter pain meds, if you think you need them. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Dehydration anyone?
georgiegirlgeorgiegirl
Mark N I am always dehydrated so I drink juice, fake juice, diet soda, non fat milk and drink all the time. It has not hurt my health 7 years since takedown and all has always been well at check ups. What if you ate some salty stuff like spicy potato chips? During football practice in Arizona as a kid they made us eat salt tablets to coach the body to hold more H20? I like celry stalks, non fattening and I sprinkle salt on the celry , tastes better and helps me drin more. I live in hot south... [ more ]
Former Member Bless you. [ more ]
Sonja6 Im also dehydrated all the time. Sometimes I get up in the middle of the night and drink everything i can get my hands on. This is so wierd but i havent been able to drink milk in soooo long. But I crave it sooo bad. I would wake up with the fridge open, drinking milk strait from the jug! Needless to say the next day was a bad one, every time! [ more ]
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J-Pouch ForumsGeneral Discussion
Colds and J-Pouch
U 1970UC
Former Member ❤️
Connie Yep, any illness creates pouch havoc (said the woman who does the laundry.) Last January a bad virus even triggered pouchitis. [ more ]
Spooky Yes, this is pretty much the norm for me too. Almost any time I get a virus such as a cold, my pouch gets a little more irritable; i.e increased frequency, sometimes more watery stools and butt burn, etc. It usually settles down as I recover from the cold. Just proof of how easy it is to upset the apple cart. [ more ]
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J-Pouch ForumsGeneral Discussion
Gallstones
K katey
Jan Dollar You can have obstructive symptoms form gallbladder issues, but they are upper GI, not anywhere near your pouch. Tailbone pain would be related to pouch issues, arthritis, and/or spinal issues. My severe tailbone pain was related to a presacral abscess. It had been tender ever since the delivery of my nearly 10 pound son, but nothing like the red hot poker feeling of the presacral abscess. Jan [ more ]
skn69 Hi Katey, Nausea yes, tailbone pain? I don't know...I had chronic galbladder problems (one very large stone blocking the outlet)...my symptoms were pain in my back under my right scapula (should blade), pain in the front under my right ribcage near my liver, occasional shortness of breath or a feeling of not being able to breath deeply on the right side, indigestion or burping and a very bad reaction to eating fatty foods, feeling like I was going to have a heart attack when I was having a... [ more ]
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J-Pouch ForumsGeneral Discussion
IV Vanco
ConnieConnie
Jan Dollar It may, but at least C. diff shouldn't run amok. My thinking was that it would probably wipe out the VSL along with everything else, so why just throw it away? If you feel like you should be proactive, how about S. boulardii (probiotic yeast used for C. diff control). It is often given with Flagyl or Vancomycin. Plus, it is cheap! Jan [ more ]
Connie No, we're dealing with orthopods and ID docs, so I dont think GI is in their job description. After sounds good. Maybe it won't have any noticeable GI effect, anyway? [ more ]
Jan Dollar I would wait until after the vanco is completed. It may well just trash whatever you give. I'd go with something cheap in the meantime, if you feel you need to, like maybe Culturelle or whatever...Did his docs have any recommendations in that regard? Glad Tom is getting home at least! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
10 weeks out!
G Guest
Manchester Regarding time spent in the bathroom. Typically I am in there for around 1/2 minutes. Most of time is spent cleaning up. [ more ]
Ang35 I don't suffer from Ibs or any other issue so food isn't that big of an issue for me. I did find that when I didn't eat regularly the gas built up pretty good. I would suggest meeting with a nutritionist because corn pop cereal can't be good for you. I met twice with a nutritionist because I was worried about getting the proper nutrition. I used to eat salads everyday and got most of my veggies that way and now that I'm not able to sit down to a big bowl of salad I get worried about... [ more ]
Guest i think i have severe ibs/ips. i eat corn pop cereal and thats it. anything i add kills me and anything white flour related like bread just kills me in the gas dept. what is with the gas people? its the single worse thing about this. i never had gas issues with colitis and i couldnt fart then. what gives? dear god this is ridiculous... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Alternatives to Tetracycline
M marquis
clz81 Yes, try the Augmentin. Works pretty wonderfully for most us with chronic pouchitis. For me, no side effects and works better than any other antibiotic. [ more ]
Jan Dollar Have you tried Xifaxin? It is not absorbed systemically, so works topically. It can be used in combination with other antibiotics too. Jan [ more ]
marquis The Ceflex worked for a little big but seems to have lost its momentum. I'm tempted to try augmentin now but would also like to see what other people are trying out wrt Antibiotics. [ more ]
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J-Pouch ForumsPouchitis
what would you do?
G Guest
Jan Dollar Yeah, until he actually looks at it with his beady eyes, it is all conjecture (OK, I don't know if his eyes are beady or not, trying to make a funny here ). Yes, a perianal abscess should be painful to touch. Maybe the lump is from the hemorrhoid and there is a deeper, perirectal abscess. Can't say for sure. But, this is definitely in or around your anus, where there are a million nerve endings (or at least it must seem so)... Good luck, and I am glad it is just until next week! A much... [ more ]
Guest surprisingly he called me upset with the schedule and moved me to this tuesday. it is a small hard lump that was hidden by my hemorrhoid. just talked to his nurse and told me it likely not an abscess or fistula because of how long the pain has been substantial (4.5 months) and the fact that it doesnt hurt to the touch. im going to try to make it to tuesday without paying too much attention too it and freaking myself out. thanks guys so much... [ more ]
Guest surprisingly he called me upset with the schedule and moved me to this tuesday. it is a small hard lump that was hidden by my hemorrhoid. just talked to his nurse and told me it likely not an abscess or fistula because of how long the pain has been substantial (4.5 months) and the fact that it doesnt hurt to the touch. im going to try to make it to tuesday without paying too much attention too it and freaking myself out. thanks guys so much... [ more ]
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J-Pouch ForumsGeneral Discussion
Pain
ManchesterManchester
Jan Dollar Maybe you have something like a hiatal hernia. It is pretty common, and it is associated with GERD, which is also common. Jan [ more ]
Sonja6 I dont get exactly that. But I do have a hard time swallowing sometimes.Followed by massive chest pains.I usually have to lye down flat on my back, to make it go away. It usually comes out of nowhere. I am a super stressed out person. So maybe [ more ]
Manchester It happens out of the blue. I can just be sitting doing nothing and it comes on really strong. Stress? [ more ]
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J-Pouch ForumsGeneral Discussion
can a non thrombosed hemorrhoid cause unbearable pain?
G Guest
Jan Dollar It can be treated, but can also become chronic. Jan [ more ]
Guest was hoping it might be a simple boil but with my luck no way. its def right at the opening and mostly painful with sitting and gas not so much touching or wiping the area. def a different formation from the hem. called into doc just in case but still getting scoped tuesday. if its what you think can it be treated or is it a chronic situation? [ more ]
Guest was hoping it might be a simple boil but with my luck no way. its def right at the opening and mostly painful with sitting and gas not so much touching or wiping the area. def a different formation from the hem. called into doc just in case but still getting scoped tuesday. if its what you think can it be treated or is it a chronic situation? [ more ]
See all 5 replies...
J-Pouch ForumsOstomy & Skin
antibiotics/extra frequent pouching
SF Sierran Farmer
Jan Dollar Yeah, Macrobid is an antibiotic, in that it kills bacteria internally, but it is only active in the urinary tract, so is often classified as a urinary antiseptic. I guess it is an old term, and I am dating myself...LOL Jan [ more ]
Sierran Farmer Thanks for the link, Jan, and for info on Macrobid. My gut flora seems to be returning, so the Macrobid must be working as you described, although in the link, it's not listed as an antiseptic but as an antibiotic. The UTI still may be present, so I'm upping fluid and getting a cranberry supplement. It's been so hard to stay hydrated: I sluice waste through my ileo, and only recently started on sodium bicarb after seeing a nephrologist. That's helped with diarrhea. I take heavy doses of the... [ more ]
Jan Dollar Macrobid, a urinary antiseptic, is supposed to act only in the urinary tract, because the kidneys concentrate it there. It is not supposed to alter colon bacteria, I guess becauseit is absorbed before it gets there. Still, it can cause C. diff infections in some people. But, with no colon, maybe your risk of gut flora effect may be higher. I couldn't find much in the way of info about probiotics with Macrobid, but I would think it should be fine to take with it, just space it out from the... [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
Budesonide Capsules and Gas...anyone?
F FaithnWill
FaithnWill By the way...all you readers...I, too, went to Cleveland Clinic 4 weeks ago to see Dr. Bo Shen. He has enabled me to progress to the next level. [ more ]
FaithnWill Considering how many surgeries I had and all of the complications...I am doing better. I thought for sure I wasn't going to make it after takedown or have any quality of life. Well, my quality has improved. I am still working towards a better result, but I have improved. There is hope and light at the end of the tunnel. Thank you. [ more ]
Guest happy to hear youre feeling better... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
4 Month Status Update
U 1970UC
1970UC hey Blake, yes, we had it on the same day, aug 21. glad to hear you are doing well! continued good health for you and let's compare notes again in a couple of months. thanks marianne and raven for your responses. it's always helpful to see how other people have fared or are currently doing. happy holidays to all. mark [ more ]
Blake D. Hey 1970, I remember you because we had our takedowns about the same time, mine was August 21st. You pretty much described my day. I'm very happy so far. I have the same problems as you with leakage and that is probably my biggest annoyance, but considering where I was with UC, I'll gladly take it. My wife talked me into wearing pads to bed, which has really helped with the leakage problem and saves the underwear. I don't leak a lot, maybe a little spot here and there once out of every 3 or... [ more ]
raven68red 10 years post take down. What I have found is that it has everything to do with what I eat, how much I eat, and what time of day it is. I also don't go for several hours after waking, but my stomach is empty. I'm not much of a breakfast person so I usually grab a slimfast shake on the way out the door. Then if I have lunch, I can expect to go to the bathroom within a few hours. Since I eat so little at the start of the day, I eat in the evening and therefore the increase of bathroom trips... [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Abcess
G Ginabello
Ginabello Did you get abscess after abscess mine is still the one I had operated on 3 months ago.It seems to get worse if I sit for long periods.. I'm going to see my Dr. Today hopefully he will have some answers.. [ more ]
Manchester Hi I have had 8 abcesses and had them drained. I have an underlying fistula and have had a few setons placed also. After commencing Hunira, I have found things have improved 10 fold. [ more ]
Ginabello Thanks for responding.. I worry because it is so close to my sphincter muscle.. How have they managed your situation is it with antibiotics? [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Anal Burning
M Moira
Solomin Hi Moira, Which hospital are you associated with? I lived in Toronto for almost 10 years and know all the doctors there. One thing that might help immensely is nefedine based solution cream. One of the causes that aggravates butt burn is spasms of the sphincter. Nefedepine based creams stops these spasms, thereby providing a chance for the area to heal. If you use it in conjunction with a barrier, it should be of great assistance. Feel free to private message me if you like. Solomin [ more ]
Moira Hi Everyone, Thanks so much for all of your ideas and feedback. I've been trying various solutions and have little success thus far. Just saw my surgeon today and am waiting for an appointment for a scope to see what is going on. The pain has only been increasing and now also feels like possible cuffitis. Reminds me of the days when my UC was very bad. I feel raw and tender inside and am passing lots of blood. Hoping some solutions and answers will come soon. Thanks again, Moira [ more ]
SallyJPouch FRH, thanks for the well thought out and precise description....so tirelessly written. Totally helpful! Sally [ more ]
See all 24 replies...
J-Pouch ForumsHelp! Need advice now!
The dreaded butt burn
J JessGoguen
Scott F I found Calmoseptine too intense, and successfully used Zinc Oxide and then Ferguson Formula (from Jamark) in the months after surgery. I liked the Ferguson Formula best. I also found Tucks witch hazel pads helpful occasionally. For me, at least, the need slowly diminished and went away completely after a few years. [ more ]
kathy smith I'll keep everything crossed for you too. Including my eyes. kathy [ more ]
JessGoguen Purchased.... fingers crossed! [ more ]
See all 4 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

After a life long battle with Ulcerative colitis, Bill finally had his colon removed and was given an ostomy in 1993. A failed attempt for a j-pouch and then many surgeries to get back his health gave Bill the motivation to create a web site dedicated to giving support to patients who have had or are considering j-pouch surgery.

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