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J-Pouch ForumsHelp! Need advice now!
leaking at night
R Rebe0505
Jan Dollar Oh that's good! I agree that traveling across half the continent is too much for regular maintenance, and you need someone local for urgent situations. You can always follow up with Dr. Shen as needed or your new doc can consult with him. Good luck holding things together until April! Jan [ more ]
Rebe0505 jan my appt is indeed for a scope because i have not done it in awhile and because i am trying to set up relationship with this dr. melmed in la ..he has seen me once but i did not do a scope with him..dr. shen has been my doctor but it was tough going from cal. to cleveland once a year so i got sloppy with going yearly.. dr. shen recommended him when i asked for a closer dr. to santa barbara.figured i was always uneasy not hang a dr. near me in case of emergency etc..so although i was due... [ more ]
Jan Dollar Pouch scope timing should depend on your original diagnosis, whether you still have a cuff, and whether or not you have ongoing issues. For me, I hit the jackpot with pancolitis, a retained rectal cuff, and chronic pouchitis. So, sure, I am hopeful that I'll continue with negative biopsies. But, I also know that long term inflammation can lead to dysplasia and/or neoplasia, so I am always preoccupied until my results are in. Same thing with my mammograms and PAP tests. Bottom line, yeah, you... [ more ]
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J-Pouch ForumsHelp! Need advice now!
stoma itching & burning
GinLynGinLyn
Ashley22 Burning and itching for me usually meant I wasn't getting a good seal and stool was leaking under the wafer. One thing that made a huge difference for me was using the convex wafers. I also used one of those sticky rings (can't remember the actually name of them) to help it stick to my skin. Barrier cream and stoma powder help protect the skin from getting raw just don't use to much or the wafer won't stick. As far as the itching I would sometimes put ice packs over it and it actually helped... [ more ]
Mysticobra I am doing a lot better than I ever expected. I can change in 15 minutes. Not afraid to... And at the beginning I couldn't. Never ever thought I would get here so soon. I am in a good place. And I do think over more time it will get even better! Richard. [ more ]
Lambiepie GinLyn, thank goodness for convex wafers! They solved my similar early on problem, too. I'm so glad for you.... Richard, it does get better. I'm a year out and definitely much better than during the first few months. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Abscesses and fistulas after j-pouch
Ashley22Ashley22
Jan Dollar First things first. Get the CT so you can find out if there are other abscess pockets and where they are. It may or may not be Crohn's. Perianal disease is common with Crohn's, but they also can be a complication of the j-pouch surgery. If the the fistula arises from the ileoanal anastomosis (suture line), then you really cannot jump to the conclusion of Crohn's (at least not yet). It is worth attempting to figure out since Crohn's complicates things. But, in the long run, your treatment... [ more ]
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J-Pouch ForumsHelp! Need advice now!
STOOLS ACIDY ANUS ON FIRE
bederyparisbederyparis
Angie Wilson I am not sure on this one - I have times when this goes on (in fact - this happened for about 2 days earlier in the week) - but then if I watch what I eat, lots of clear broths, etc. etc. - it goes away and I am ok. Have had this last up to about a week max and other than ointments, I just stay home and ride it out. Over the years with the pouch - this has probably happened to me on less that 2 percent of days? 1 percent? Not sure. When it happens, it hurts terribly and yes - feels like... [ more ]
lelak Nitroglycerin is a vasodilator which relaxes the sphincter muscle and allows the fissure to close and thus to heal, is my understanding. Diltiazem does the same, and without the side effect of headaches that nitro has. [ more ]
JHendrix I think Jan's idea about a fissure is a good one. I found a fissure to be very painful and different from butt burn. My doctor prescribed a nitroglycerin ointment which I found odd but it helped. [ more ]
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J-Pouch ForumsHelp! Need advice now!
How to pass gas quietly?
alecz222alecz222
Angie Wilson Wish there was a solution to this one - if there is one, I have never found it in 30 years with pouch. Loud, explosive gas is just part of it for me. (true that when had stoma - this was not a problem). I try to plan around this type of thing by not eating much when I'm out with people - men don't seem to care - many women do. I also have to clean my toilet every day due to the lovely spray of shit all over it. Wish I had an answer - I have not found one to this one and if someone has, I'd... [ more ]
Mysticobra Re: How to pass gas quietly? [ more ]
Scott F A large fraction of us are unable to safely pass gas away from a toilet without risking a mess. I'm jealous of your skill. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Extreme Rhinitis and skin allergies
Christopher100Christopher100
deweyj aw bummer. sorry to hear that Jan. that is an interesting observation that it is almost universal that chronic pouchitis is cropping up in long term pouches. I started experiencing chronic pouchitis around 19 years, curiously I now find myself at almost 30 years and still kicking. I will have to remember to ask my doc the same question. when I go for my scope in a few weeks. [ more ]
Jan Dollar I just had my pouch scope today and it turns out I have rather severe cuffitis and pouchitis, despite taking all my IBD meds AND rotaing three different antibiotics for the past year. I am amazed my gut function is as good as it is. My GI is going to discuss my meds with my rheumatologist to see what we can change up to improve things. He was saying it is almost universal that chronic pouchitis is cropping up in long term pouches. Mine was 20 years old last August. Jan [ more ]
Christopher100 ❤️
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J-Pouch ForumsHelp! Need advice now!
Remicade - life's been good. Now - ugh. Deteriorating. Fast.
D _Dan_
Jan Dollar Well gee, that really sucks, Dan! My advice? You probably won't like it, but you probably are best off moving on to the next drug recommended. While I have not been bothered with side effects, I have dealt with dwindling effectiveness. I am on my fourth biologic. However, I never have to jump through approval hoops to change meds. I just have a discussion with my rheumy and the new drug is approved. The only "hoop" I have is to fail the current one. They all cost about the same, so it... [ more ]
_Dan_ Crohn's DX 27 years ago... [ more ]
deweyj Interesting that Humira yielded unacceptable side effects but Remicade worked well for a while. Entyvio is thought to be largely gut released, so in theory should yield potentially less side effects. that said, I have seen reported the usual occasional side effects from patients who are colon carriers. I will observe with interest your success with Entyvio. Hopefully it works well for you. Curious did they ever biopsy Crohns tissue? where did they find it? Technically I now also carry a... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Bleeding and no other symptoms beside being exhausted.
C canlafre
dcpropilot Hi Canlafre, I just had an appointment with Dr. Holubar at Dartmouth after Dr. Murray retired (Dr. Murray was the one who did my jpouch surgery in 2009). I highly recommend Dr. Holubar. Very good experience so far with him as my new doctor. [ more ]
GinLyn DON'T FEEL GUILTY! We are own best advocates. Think of it this way: you are helping them do their jobs properly and care for you adequately. I echo Jan: I did have this type of bleeding once and it was a burst vessel which required cauterization (which didn't hurt, fyi). But do ask for an anemia check and do push to get to the bottom of this. Mine got so bad it required a week's hospital stay and a blood transfusion -- you don't want that! Best, Gin [ more ]
Angie Wilson Be sure you are checking for anemia (I'm sure you are) - my sister went thru this with her pouch a few years back - finally they found a problem elsewhere - she had to get IV blood infusions and the entire thing scared her to death....but the good news it- after finally going to C. Clinic - she got it fixed and is doing great. It is awful to have to start over with a new doctor - hate it when that happens...there was a period of time when I wrote it all down - typed it- and just handed my... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Severe butt burn with bleeding please help
Mema 1Mema 1
Mema 1 Thanks for the reply! Yes the blood is bright red and I peeked, the skin is quite broken I think because I've been leaking somewhat it must be burning the skin. I took numerous soaks yesterday and it seems a bit better today. I'll be careful as far as food goes for the next few days...thanks again. [ more ]
deweyj you likely already have, but if not, stop eating solids. when things get whacked going to clear liquids is my default option. is the blood bright red? based on your comment that you are straining I am going to guess that you have hemmerhoids maybe and that's the blood? in which case is it really butt burn or hemmerhoidal discomfort? if you bleed enough that you begin to get dizzy, light headed, have trouble breathing, get thee to a hospital and fast. I would also candidly call your docs on... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cleveland Clinic
J Joanm
Pouchomarx Hello, yes I dealt with my sinus for over a few years.Went back to an ileostomy for over two years. Dr Shen and my surgeon tried to fix it a few times and all failed. It was coming from rear of pouch back into my small bowel. I also ended up with a tip of jpouch leak that gave me a spinal infection. Dr Remzi redid my entire pouch in October. It went very well even though it was a long complex surgery, 8 hours. I was in hospital for 9 days due to some minor complications but I was back to... [ more ]
n/a Joan, are they doing a scope, or an "exam under anesthesia"? I just wanted you to be aware that if it is an EUA, it's pretty much a 5-6 hr. + affair. They can't tell you the time it will be until the day before the procedure due to complicated scheduling issues. If they gave you a number to call the day before to find out the time, call very early, and/or let the surgeon's assistant know now that you would like to get in very early to have it done. They can't guarantee anything, but it's... [ more ]
Joanm Thank you, Jan for your quick reply. I really didn't know exactly what a sinus was when the nurse said that is what they found, but I asked if it was literally like a sinus cavity in your head, a space, but it should not be there and she said yes. She said they can form at the time of surgery or anytime after. The nurse I spoke to was extremely thorough and patient with my questions and went on to explain kind of the worse case scenario if in fact I would need reconstruction or a total... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Severe bowel pain/diarrhea, in Vanuatu taken to clinic in ambulance
J JoVic
Jan Dollar Jovic, funny how it works like that sometimes. You get incredibly sick out of the blue, and try as they might, they can't find the culprit. A few years back I wound up in the hospital in septic shock. They thought maybe the flu virus, but PCR testing ruled that out. Blood cultures were negative. They bombarded me with multiple IV antibiotics and antivirals and I was fine in a few days. Go figure... Thank goodness for modern medicine to support my body until this thing resolved. Did you... [ more ]
TE Marie I'm glad you are doing so much better! My GI told me that the dosage of antibiotics he prescribed for pouchitis was less than prescribed for other infections in our bodies. I was given triple the dose of Augmenten for a UTI than he'd prescribed for pouchitis. I have been on Flagyl, Augmenten and Xifaxan for pouchitis in the past. (I can't take Cipro and had to stop Flagyl. Too bad as those seem to be preferred for pouchitis.) [ more ]
Angie Wilson Glad to hear things are on the mend. So sorry you went through this and I hope you can report to us soon that you are totally well...as well as we can be with our pouch - which during many years is really, really well! Glad your pouch looks good. Hang in there! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch 1 1/2 yeras Butt Burn
BA Bill A
Former Member Applying ilex as a preventivd measure, to treat mild butt burn or an itching burning sensation is a bit of knack, knowing just the right amount to apply without it becoming a sticky and uncomfortable mess. Applying in such circumstances, cleanse as normal, either with toilet paper or non scented, natural n pure baby wet wipes, probably best use wet wipes until familiar with the process; plus the residue from the wet wipe, when on the skin, kind of helps the applied ilex paste spread more... [ more ]
Bill A I have tried again and it does seem to work best. Do not want to get too excited since I have been so disappointed before. You have explained much of what confused me. I would ask the following. What if any medication cream is aqpproiate to heal the sores. I assume it is not required. The most important is the cleaning. You do it once a day and when. I bought baby oil is it best. Where do you buy the ilex. What is quanity. Do you rub baby oil til it seems like no sticky suff or are you very... [ more ]
Former Member I suggest you try the ilex paste again, I'm surprised it caused pain when applied. but If you know for certain it did, then stay away from it. From my own experience I endured nearly a week of excruciating pain and discomfort due to the output of my loop ileostomy leaking onto the skin around my Stoma; it was the worse experience of my life, I even questioned as to whether I made the wrong decision to opt for a J pouch. The skin around my Stoma was red raw, broken, blistering and oozing; it... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Colon Removal
J Jenn
Jenn I know what you mean about taking your pain meds. A lot of people think that if you take them your gonna get addicted. My MIL didn't want to take them because of that reason. I explained to her that if your in pain your not gonna get better because you don't want to do anything. If you get your pain out of the way, it's easier to focus on getting better. My husband explained that to her as well since he has seen me go through all this. Thank you for responding with such care!! [ more ]
Angie Wilson I am so thankful you are there for her. This is priceless, it is so hard on both patient and caregiver, and in the end - it's perhaps one of the most important things we do in life. Your MIL is fortunate to have you and I hope the ups and downs of the next bit of time go by fast. I also try to remember that sometimes it is worse to watch than it is to experience it - but I was always one to take pain meds and sort of get through first weeks after in a dilaudid (sp) haze - I am so thankful... [ more ]
Jenn Thank you so much Angie Wilson. After I spent the night in the hospital with her (we all know how boring that can be), she told me that she wouldn't have gotten through the night without me. Thanks to all of you!! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cipro Migraine
LambiepieLambiepie
TE Marie Barry White would definitely work better than xanex! Please let us know what you find out. It's not like you want them to find something wrong but you want to find out answers. [ more ]
Lambiepie Thanks, TEMarie, I'm hoping for no Crohn's, too, but I would like to know the cause of the slow drop in iron. I have my prescription filled for two Valium. I'll do what you did - one an hour before and one right before. I'm hoping they have headphones. I had an MRI about ten years ago and my tech sounded like Barry White. His voice was like honey! [ more ]
TE Marie I'm hoping for no crohn's. The MRI might help to diagnose what's going on besides that as well. I had headphones for an MRI on my head and it was fine. I took a Xanex an hour ahead of time and one right before it. I brought my own. Just a suggestion. Good Luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cruising to Caribbean
Y ytcrockpot
ytcrockpot Thanks Cruising is such a great way to travel and see different ports. Your pouch is never to old to travel, mine is 34 going on 35 years this June. I would love to do a Europen one, but don't want to travel overseas myself. As soon as I find a roommate, I'm going! [ more ]
Angie Wilson Fantastic!!! So glad you had a great time - I took one 14 day European cruise years ago with no problems at all. I have sort of avoided them as my pouch has aged, but maybe I need to try one again -hearing all of you speak so positively is so encouraging to me. Just so happy for you. [ more ]
deweyj Wonderful! now I am less anxious about contemplating a cruise. glad you enjoyed it without issue. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Blood - Brand New Pouch
M MannyG
Angie Wilson I agree with the two above - had some blood for sure post take down - monitor it and stay hydrated. If you are really worried, call surgeon and just have him/her check it out. It seemed like I had to go in once a week or something post op anyway - but that was a long time ago. I know you want to avoid going to dr. - but don't wait if you continue to worry more than a couple more days...it will just drive you nuts and taking action will give you answers - and likely - peace of mind that it is... [ more ]
Emmyschmemmy I saw blood following my takedown for about three or four weeks straight. I was concerned enough about it to go see my surgeon who did a flex sig and said it was all normal! He saw a slight inflammation at the connection sight (the "cuff"), which was to be expected since everything was so new. I'll echo Sharon -- monitor your symptoms and if you feel worried about something, give your surgeon a call! [ more ]
skn69 Blood is a kind of funny thing, a small quantity can colour the bowl...and be very, very impressive...not saying that you are not bleeding (and you are right to post and ask) but just that you need to monitor it closely...how much is a lot? Does it drip on its own or is it just mixed in with the stool? (I know, gross quesitons but important)....yes, you may bleed post take down but it should taper off slowly and not normally get worse. Add to that the pizza that may be somewhat acidic and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Fissure?
T TomU
Jan Dollar Scoping is great for revealing inflammation, growths, strictures, stiff walls, overstretched pouch and those sorts of things. However, it cannot show what your pouch does when you are trying to empty it. Anesthesia would only relax things even more, so it is a passive exam, not a dynamic one. Defecography is done in "real time," where you are given an enema of thickened contrast. Then flouroscopic imaging shows what your gut does while you try to empty the pouch. It can be embarrassing, but... [ more ]
TomU Hi Jan, thanks for you response. I've already had a scope of the pouch done under general anaesthetic, would this be able to reveal any structural defects or are other tests required to assess the structure? Nothing like this was reported to me afterwards by my surgeon. [ more ]
Jan Dollar If it was a fissure, I would think you would have extreme pain with every bowel movement. Plus, Botox should have helped in some way. What you describe could also be a structural defect (like an internal prolapse or twisting of the pouch) or muscular dysfunction (such as pelvic floor dysfunction). MRI may or may not sort this out. Defagraphy may be the next step, which shows the actual emptying process. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hemorrhoid trouble!
linalina
Emmyschmemmy When I get hemorrhoids, I find the only thing that truly helps make them go away is to time my bathroom trips. If I set a timer for 3 minutes and finish my business in that time, the hemorrhoids subside much quicker than when I don't time my bathroom trips. It's so easy to sit there and play on my phone or read a book until I feel like my pouch is empty, but this is a big no-no! [ more ]
Angie Wilson Had one outside once - it did go away - got help from doc - did not cause any continence problems beyond the usual issues we all deal with. It hurt a lot and more than that, it scared me...but it turned out fine. I hope you call your doc and get some help and as Jan says "this too will pass" [ more ]
Jan Dollar You can use hemorrhoid cream to help with the pain. Call your doc. A hemorrhoid should not affect your continence, as it is not in the sphincter. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Any of you on Humira for Pouchitis?
ValerieKValerieK
Jenniferann I was on Humira for psoriatic arthritis. While I was on it my pouchitis completely disappeared. Unfortunately my arthritis did not respond as well so the doctors took me off of it. [ more ]
deweyj fwiw, about ten years ago, the frequency of pouchitis increased to every 3 months for me vs about every 18 months, so my new doc (had just relocated to SF) amended my dx to crohns and wanted me to start Remicade. I punted because ten years ago I didn't have as much familiarity with biologics (nor did the world) as we do now. that year arguably was a bad call, I have since developed strictures - one mid pouch and another above the pouch which arguably might have not happened had I just... [ more ]
JMarie Diagnosed with pouchitis in 2006 and have made my way through the usual tx of Flagyl, Cipro, Endocort, Hydrocort...now on Augmentin (love it until it starts to make me feel nauseous). Last year I started Remicaid and then after 9 months of feeling great had a reaction (severe abdominal pain during infusion and blood test showed antibodies.) Am now ready to try Humira however, my insurance is denying the Humira for the dx of pouchitis. They did this for the Remicaid but once my provider... [ more ]
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J-Pouch ForumsHelp! Need advice now!
High Grade Dysplasia J pouch.
VR Very Rare
Angie Wilson So glad you are at CC - they are the best. I am hoping for a positive outcome -as in a least invasive, easiest to deal with outcome for you...and if that cannot happen, I am hoping for the alternative options now available for you. So sorry you are going through all this - your attitude is so positive and that is a lot of the battle, as you know. Take care and know people out here care. [ more ]
Very Rare Angie and Jan. Thank you for your responses. The Drs. at CC are great. I had an earlier reading of HGD and was sent to CC where they have monitored me very closely(6 month pouch and endoscopy). Now that HGD has reared its ugly head again 2 1/2 years later they are very concerned. I have not asked about the alternative procedures(K pouch and BCIR) but will now enquire. I have regained my freedom over the last 5 years and if it comes to permanent ileo I'll have to deal with it. Thanks again... [ more ]
Angie Wilson I'm sure there HGD is different with UC and FAP - just wanting to give you hope and wanting you not to jump at whatever the first doctor tells you. I truly hope the solution is easy rather than difficult and that if you do have to get an ileostomy, you can get one of the newer, improved models with no outside bag. But - I hope you get lucky and don't have to do any of that! [ more ]
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J-Pouch ForumsHelp! Need advice now!
ABDOMINALS
bederyparisbederyparis
skn69 Could be...then again it could have nothing to do with it whatsoever. Generally when you start exercising, especially if you are concentrating on a specific region, you stimulate it. You could be suffering just some temporary side-effects of an over stimulation of the zone. It is somewhat rare to really hurt yourself 5.5 months post op just be doing abs (but not unheard of). Watch it, monitor it and see if things improve. Keep off the exercise for a few days...if things do not improve again... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Partial obstruction for multiple days
U UCfree2012
JIMMY B Hello I've had my pouch for 15 years and as the season come and go it's always different I seam to forget to drink water in the winter because I don't seam thirsty just like the summer I have to drink twice as much I also find stretching my body everyday helps to so LOTS OF FLUIDS ever day [ more ]
tulsamom Glad you are feeling better. I've had two in the last two weeks and I don' think food had anything to do with it. I think it's the adhesions and a kink. I've been doing yoga for 3 weeks. Lots of twists and compressions. Any thoughts on that anyone? [ more ]
therealstinger I have found out that Roughage always gets me locked up, So I never eat raw veggies, NO Cheese , very little bread. And most of all never woof down that food. What I found out is if I eat high fiber > beans it will start the blockage , a few days later im locked up and have to look back at what I eat days before. Sure enough it all started with a particular food days before. So here goes that half to full bottle of Citric magnesium , heat pad, coffee and pain for a few hours. I have had... [ more ]
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J-Pouch ForumsHelp! Need advice now!
crazy itching as related to antibiotics
R Rebe0505
Jan Dollar Good point Scott. Also, drug rashes are usually on the trunk. But, I learned long ago to never say never (or always). I get dry skin eczema in the winter and it can drive me nuts. I have noticed more rashes when I'm on antibiotics. Been off for a week and it is clearing. Jan [ more ]
Scott F Since the itching seems to come and go, it's also worth considering other (non medication-related) causes. Dry skin would be at the top of my list, at least with the winter weather we're having here. [ more ]
Rebe0505 thanks jan..i think i will try lowering dosage ..its high 500 mil three times a day ..maybe i can get by with two times a day 500 mil..and i need to see if i constantly get itchy ever night on it i guess..will repot my findings in case anyone else has this problem..benedryl might work if i take with it.. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Swelling with remicade
C Crystal<3
Crystal<3 Before infusions they give 2 Tylenol and Benadryl..My first infusion I was sick and had a major headache but after the second infusion had major swelling and sick for 2 days as well as the third..Thanks for your reply�� [ more ]
deweyj its not a common allergic reaction but it certainly sounds like somethings amiss. curious did they premedicate you before each of your infusions? so infusion 2 and infusion 3 have caused this major swelling? you might also try calling the infusion center staff as well and get them on board to this reaction. and Jan is absolutely right, the most severe reaction would be anaphylactic shock and you don't want to experience that. [ more ]
Jan Dollar Sounds like a reaction. You need to notify your doctor. Take some Benadryl in the meantime (generic is fine). Go to the ER if it does not improve or you feel any throat swelling or dizziness. If you are OK to have another infusion, they will need to premedicate to prevent another allergic reaction. You need to take it seriously, as each exposure can cause a more severe reaction. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Post takedown, leakage, burning pressure pain, problems emptying
S sally85
deweyj ah yes for clarity you had a 2 step vs a 3 step. candidly from what ive heard the loop ileo is often a brutal period as for whatever reason, maybe Jan or others can explain the nature of the loop ileo makes for more challenges. I agree with Jan though, if indeed there is a belief that you have a leak, I am at wits end understanding how the surgeon or any medical professional overseeing your care isn't attending to it immediately? I think you need to call your surgeon, your GI, your PCP,... [ more ]
Jan Dollar If it makes you feel any better, skipping the diverting ileostomy did not cause the leak. They happen regardless. But, it does reduce the contamination coming from above. If your surgeon did not order your MRI as urgent, you should call back to get this done ASAP. Usually I am not one for making too many demands, however, it sounds like you have an abscess brewing and it will likely get worse before it gets better. Be sure to take your temperature twice a day, before taking anything with... [ more ]
Duane Wells ❤️
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J-Pouch ForumsHelp! Need advice now!
Painful after bm
N neosapphires
Jan Dollar Sounds like a fissure, which is a tear in the anal canal. The treatment is warm sitz baths and management of stool consistency. Either too firm or too loose stool can lead to straining and fissures. If it does not improve in a few days, you need to see your doctor to get a prescription cream to treat it (nifedipine or nitroglycerine). Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Spasms
BA Bill A
Bill A I have been taking vsl3ds for a few months and I know it has an initial gas contributor. I have never been able to avoid the gas issue. The problem is not its avoidance but the butt burn that results. Number and quality of BMs is improving but still it and gas issue make butt burn very difficult. Still need and awnser [ more ]
Jan Dollar Opiates really are not very good for spasms, even if they seem to work. The doctors have to jump through hoops to prescribe them, especially if you are taking oxycodone, which has a very high abuse potential. But even with hydrocodone, they are clamping down. I know, because I have been on it for many years at very small doses. If the anticholinergic antispasmodics like Bentyl and Levsin have too many side effects, how about trying the muscle relaxers, such as Valium. It is not without its... [ more ]
Jeffsmom Ks1905, it is the FDA regulations. They probably looked over his script writing and perhaps received a warning. I lost a script for something, I forget and the doctor went nuts. But cutting you straight off is dangerous. I'm sure you had some amount of withdrawl. [ more ]
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J-Pouch ForumsHelp! Need advice now!
J-pouch
R Rena's10
deweyj hello and welcome! first please note that this forum tends to self populate with people who encounter challenges, not all jpouchers have these challenges. consequently, you have happened upon a potentially wonderful resource if indeed your daughter encounters surprises along her jpouch journey. I would be sure that the surgeon has a good relationship with the GI, hopefully an IBD expert that is following your daughter. I would also ask the surgeon how many jpouches she/he has done for... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Being discharged from Hospital... but dont feel I am strong enough
ShylockShylock
Breezie While I agree that getting out quickly is better for avoiding hospital-borne infections, I understand your dilemma. When I was in my early 20s, before I developed UC, I had an emergency removal of my gallbladder. I didn't have family and friends in the town where I was and I was being pushed out of the hospital the next day, before I felt I was ready. The magic words that changed things was when I said, "I don't think I will be able to take care of myself." And bingo, I was granted another... [ more ]
deweyj shylock I hear you. the general belief especially if you are on immunosuppressive meds is that a quicker exit is better especially with the sad trend of horrid infections finding hospitals as very hospitable breeding grounds. that said, I also find that for GI patients who have endured as you have, ie obstruction, vomiting, intolerance of input, that one would be wise to be sure that the patient is able to ingest with some level of normalcy. maybe not a steak per se, but at least scrambled... [ more ]
Scott F Generally the only reasons to be in a hospital are when 1) something needs to be done there, or 2) something needs to be observed there. I tend to try to get out of the hospital as soon as humanly possible, so if it's reasonably safe for me to leave, I'm out of there without delay. So if you really want to stay, speak to what the hospital staff will do/observe that cannot reasonably be done at home. And make sure everyone washes their hands! [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
I read about too many complications with Jpouch
Becky18Becky18
Former Member I've only recently had my takedown and a j pouch is the best decisions I've ever made. No complications as of yet; 3 to 4 BM's per day, sometimes 5, maybe 6, no night time BM's or leakage. Can go for couple of hours between BM's and never any urgency. I eat all kind n types of foods, although not spicy hot Asian/Indian food by choice. What I eat makes little difference to output, although porridge/oatmeal has an effect on output and increase BM frequency. By choice I don't consume alcohol. A... [ more ]
lholdem It's certainly not ideal to have an entire organ removed, but then again it's not ideal living constantly with a diseased organ either I don't know why exactly you're considering surgery - Mine wasn't emergency, but I had enough dysplasia that my cancer risk was way too high. I'm going on three years now since surgery, and they been my healthiest three years in a very long time. I would definitely try the J-pouch and you can always revert to an ileostomy if it doesn't work out. [ more ]
kta When my large intestine came out, I realized just how much UC was controlling my life. I love my pouch. It is not perfect, but as others have said, I would do it again in a second. For me, the ileo was horrible. I hated every moment of it. I was always sure it smelled, my skin is sensitive and I had inflammation and skin breakdown under the wafer, and looking at it disgusted me. That said, every choice is individual. Good health in your choice [ more ]
See all 14 replies...
J-Pouch ForumsHelp! Need advice now!
Post Proctocolectomy 4 weeks and exhausted!
Rosie RoseRosie Rose
Rosie Rose Thanks guys! That makes me feel better. I think that's a good idea Jan! I'm gonna do that and I'll update soon! Thank you everyone! [ more ]
Jan Dollar Dewey is right. The Imodium probably gave you energy indirectly by slowing your gut and improving water absorption. Slower transit time also means more nutrients absorbed. That is the good news. The not so good news is that Imodium has a cumulative effect. It will build up over several days, so you need to pay attention to your output and adjust your dose accordingly. So, rather than take it for several days, then stop it completely, it is best to start off with a low dose and gradually... [ more ]
CeeeeCeeee Listen to Jan and your body! It took me almost a full year to regain stamina. I took naps as needed and did my best to eat a balanced diet with much protein. Don't be hard on yourself. You've been through a lot! [ more ]
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J-Pouch ForumsHelp! Need advice now!
NG tube
M maddie18
Jefferson Yeah depends on the nurse putting it in, my last ER trip the nurse did it so fast and careless it cut me through my nose down to my throat. I HATE NG tubes but it's a necessary evil. [ more ]
CeeeeCeeee I had a twisted bowel (small intestine) about 2 months after takedown. Ouch!!!!! Admitted to hospital. Nurse put in NG tube and was a pro at doing so! I was on a morphine drip with a pain pump. Every day my surgeon visited about twice. Each time he told me he had reserved operating room but wanted to try untwisting my bowel by manipulating it. Ouch!!!!!! However, after three days, relief!!!!! His deep massages worked! I remain very grateful to him! [ more ]
Angie Wilson yes, been there. had ng tube several times. by a fluke, during a hysterectomy, they botched it and perforated my bowel. So, they had to do emergency surgery and they really went after tons of adhesions and tried to sort of get my small bowel arranged better. Had one time after that with an ng tube. No blockages since. I hope you are getting better. It's so hard and frightening when you are in the hospital and you fear the worst. 29 years of j pouch and I'm still here. Hang in there. [ more ]
See all 9 replies...
J-Pouch ForumsHelp! Need advice now!
Sudden cramps & bloating
ShylockShylock
Jefferson Yeah I think dying would be a lot less painful and a whole lot easier. I had a strangulated adhesion 10 years ago and my surgeon said he used Seprafilm during the surgery. I had a scan last week and it showed no signs of adhesions so I'm guessing it helps. My surgery was an emergency but I'm glad I had it now and if my surgeon tells me I have adhesions in the future I'll have the surgery again in a heartbeat to avoid the agony of a total blockage. [ more ]
Megan O Very sorry you are having to deal with this. I can relate, some of the worst pain ever. I've had surgery to "tidy. Up" (love this phrase!) adhesions three times now. The surgery isn't fun but far preferable to the pain and agony being obstructed. I have my pouch since 1986 and have no other issues with it, so far. I had never heard of the adhesion barriers before, interesting. My thoughts are with you, glad you are getting some relief [ more ]
deweyj ouch! NG tube will eventually help, its undeniably uncomfortable but in some respects the more uncomfortable it is, the good news is the less uncomfortable your abdomen will be. don't know much about adhesion surgery but at least youre in the hospital and can be attended to. take it easy, it should be better soon. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Remicade for fistula
C Crystal<3
rachelraven Link to what a LIFT procedure is. Currently things are kinda calmish with me, so I'm just holding. http://www.ncbi.nlm.nih.gov/m/pubmed/24201738/ [ more ]
rachelraven I'm not in NY, sorry. My new surgeon trained at Mayo; he's currently at WVU Medicine. [ more ]
deweyj fwiw, I know someone from local support group who with her jpouch ran the gamut of meds, Remicade, Humira, Simponi, to no avail and was battling fistulas, she started on Stelara late spring and last I heard (in the fall) was doing quite well. so maybe that's some hope. her docs had been encouraging her to consider perm ileo to resolve the fistulas. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Noisy BMs!
ShylockShylock
Angie Wilson Rachel -Good for you!!! You have a great attitude- maybe I will get there one day! I just feel like my privacy is being invaded - but I wish I was like you! I know my father, who is now 80 and got his pouch at 50 does not care a bit about it. He lets it blow wherever he is and doesn't give a shit My sister and I do care. One of my best vacations was with family years ago - we went to this little cabin up in islands off Seattle - it had an outhouse. I LOVED it. It was quite a distance from... [ more ]
Angie Wilson Shylock - I'm like you - I just would rather not have explosive gas and poop that blows all over the toilet in public RRs. Others seem to have no problem with it - I think it's very personal and I think a bit harder for women than men - but I could be wrong. You should feel zero guilt for using disabled RR. None. When I was working in schools for years, I would go walking around the school to try to find an RR with no one in it....sometimes successfully, sometimes not. I would not eat much... [ more ]
Shylock Thank you for your responses! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jpouch takedown diversion colitis bleeding
E elooney
Angie Wilson All these stories make me think as I age I need to move to Cleveland. I so hope ELooney that you are getting help and/or feeling better!! [ more ]
Pouchomarx several months ago I did have ALOT of bright red blood in the toilet, it looked like when I had UC. I got a scope with Shen the following day and it was really bad diversion colitis, as Shen thought. He sedated me and scoped and sprayed glucose in there and actually put a tampon in my butt. Told me to remove it in 24 hours, which I did and it was all gone. several months later I ended up getting my pouch redone by Remzi due to the sinus and tip of j pouch leak that I dealt with for 2 years. [ more ]
Jan Dollar I haven't had it, but do go to the ER if you are feeling weak or dizzy. Hopefully it is just bad pouchitis, but you could have an ulcer that eroded into a small vein. It could need to be cauterized. Jan [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Doctor Needed
ChrIssy25ChrIssy25
mary beth Hi Chrissy, I was searching for a doctor in my area and this post came up. My 18 year old daughter has a jpouch (UC - takedown March 2015). We live in Fenton. She had her surgery at U of M. I love her surgeon Dr. George Mychaliska but he's a pediatric surgeon as she was 17 at the time. We have seen a few GI's there but so far haven't been too impressed. I'm sure there are very good ones there, it's one of the best. The one she has now is very young and inexperienced so thinking about... [ more ]
Scott F If you can find an internist in your new community (perhaps recommended by a friend, family member, or colleague), he/she might be able to help you find someone at the university. The easiest time to ask is during an initial "getting to know you" appointment. [ more ]
ChrIssy25 Originally Posted by cbjonice: If you are able, might want to try the University of Michigan. I heard they have some quality IBD specialists. Sorry and hope you get relief Thank you. Appreciate you taking the time to answer. Do you know if a person just calls the University of Michigan or must you be referred? Once again, thank you for taking the time to read and respond. [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Burning Barbie butt
LambiepieLambiepie
Lambiepie You are wonderful with your replies and I am so grateful for them. The plot thickens! I woke up to messy pj bottoms and immediate relief, so I suspect an abscess was right on the money. I will see surgeon but I feel so much better as my pj bottoms are cleaning up in the washing machine. Thank you all! [ more ]
Jan Dollar I agree with Scott. Sounds like an abscess. Taking Percocet is fine. But if this pain really escalates, go to the ER to have lanced. Jan [ more ]
Scott F The hard, swollen area sounds like a possible abscess, which also fits with the worsening pain. I'm glad you're seeing your surgeon tomorrow. If my guess is correct then it is helpful that the location is obvious. Relieving the pressure of an abscess by draining it with a needle (or a small incision) can bring immediate relief. Please let us know how it goes. [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Crohn's after J -Pouch surgery-Symptoms
Sabina1107Sabina1107
deweyj I have not been there myself, but from what ive read from many others is that the GI known as the jpouch guru is Dr Bo Shen. I believe the surgeon who he often works with is Dr Remzi. good luck. [ more ]
Sabina1107 Is there anyone who colud help me to contact the best doctor for J-pouch surgeries at Cleveland Clinic ? Thx [ more ]
Sabina1107 allykat,we already contacted acibadem clinic,since they know what's happenning since July 2015.But thanks for your help. :-) CTbarrister,u are right.It is scary without insurance,but we are working on that.I hope we get some help (financial) before we get there.It depends on our doctors.If they sign that they can not help us anymore,our country would cover maybe 10-20 %.But if they don't sign it,we have to pay everything. [ more ]
See all 21 replies...
J-Pouch ForumsHelp! Need advice now!
cramping in abdomin
ksrksr
JenJen I have been having similar problems since my total colectomy 5 years ago. I was hospitalized for a handful of blockages and then had surgery for the last major one (ICU) which included component separation surgery to repair a large incisional hernia. The blockages have never gotten as severe since the last surgery 2 years ago, but I still get the symptoms you describe. I get the same feedback from the medical community that this is really "par for the course" given our altered anatomy and... [ more ]
ksr 4 of the operations were done in 1 year and 8 months! That about did me in! [ more ]
Mysticobra Ouch.... 7 surgeries.... I've had four in two and never want it again. Hope you get it figured out without surgery. Richard. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Takedown surgery scheduled for January 28
HaidalynHaidalyn
Haidalyn Thanks so much you guys. I am so grateful for this forum. It was a godsend in those dark days post surgery and I am sure will continue to be. [ more ]
deweyj this is why you went through the first two surgeries! you'll be ok. given the complications the first two rounds, the takedown might very well seem a walk in the park by comparison. and if anything arises youre here so you can tap into the vast body of experience available. good luck! [ more ]
Scott F There will be a recovery and adjustment process, but in general your output will be thicker (especially if you take soluble fiber), your diversionary Pouchitis will be cured, your absorption should improve, and in all likelihood you'll (over time) get to 4-6 BMs per day. You really do need to find some help for a few weeks at least, though. Good luck! [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Subtotal colectomy
J Jenn
Jenn Thank you, thank you, thank you both for clearing that up. I've been so worried. I know of course that the doctors know what they're doing, I just didn't understand. [ more ]
Scott F The rectum is the end part of the colon. It's 10-15 cm long, so if it doesn't need to be removed it can perform the function of storing up stool, which is what a J-pouch is constructed to do using the end of the small intestine. [ more ]
Jan Dollar If she is having a subtotal colectomy, some of the colon will be left behind. So, there must be a miscommunication somewhere along the way. total colectomy= entire colon removed subtotal colectomy= most or part of the colon is resected total proctocolectomy= entire colon and rectum removed If the rectum is left in place, no j-pouch is needed because the purpose of the j-pouch is to replace the rectum. A redundant colon is where the colon is longer than usual, and can cause excess loops and... [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
lots of surgeries
M maddie18
skn69 OK...in French we say a 'B Flat'...your surgeon commited a B Flat meaning that he hit the wrong key and it made a really bad noise (a clunker or a big mistake)...Before throwing him out with the bathwater (to mix a few metaphores here) ask him why.... Sometimes (granted not that often) the rediculous things that some surgeons come up with can be related to real fears for your health and life...so before you give up completely on him please ask for clarification. Too skinny? That may just be... [ more ]
lablover I'd get another surgeon. What a horrid thing to say. [ more ]
Angie Wilson Sharon - thanks for giving great advice and support to Maddie18. Maddie18- yes - had to have strictures dilated both without and with anesthesia - it eventually worked! Hang in there! [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Possible pouchitis?
C Chayes
Jan Dollar As long as you have some other adult to help you with the kiddo if things spin out of control... Fingers crossed that this settles soon. I know what it is like to have things go seriously wrong in a short period of time. You may want to have MIL stay with you while your husband is out of town. Jan [ more ]
Chayes Unfortunately his trip has been scheduled for months and he can't postpone at this point. My mother in law is really good to help out. I'm going to an urgent care in a few united hopefully they will give me some antibiotics. I am not confident in the ER at this hospital or the hospitalist they have so I don't want to go that route just yet. I haven't been able to eat anything since Thursday [ more ]
Jan Dollar This sounds like a fast moving GI infection, because it came on so suddenly and severely. If viral, it has to run its course. If bacterial, antibiotics will help. Either way, it is essential to maintain your hydration. If you are not careful, you could land in the hospital. I'd get to urgent care and get on antibiotics right away. They can refer you to an ER GI if necessary. You may need IV fluids. Rotavirus usually only last a few days, but you don't know what this is. Any chance your... [ more ]
See all 3 replies...

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William J. Johnson
bjohnson@j-pouch.org

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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