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J-Pouch ForumsHelp! Need advice now!
Pain in my jpouch!
Z Zee87
Jan Dollar My guess is adhesion related pain, since your pouch scope looked good (although that was before this new symptom). You could have a stricture forming, but difficult to know with these symptoms (too soon to tell). Since you have FAP, unlikely that it is pouchitis brewing, but it does happen. Could be something as simple as a virus you picked up. Just keep track of things and call your doctor if this pain persists or becomes severe. Jan [ more ]
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J-Pouch ForumsHelp! Need advice now!
Recent Takedown and butt issues
F FXT
BrenMc Thanks FXT, I'll def try it. Fingers crossed. [ more ]
FXT Thanks for the responses guys. Kta I havent looked at the food list and will look at it asap. Even though right now my symptoms are good, you never know whats going to happen after antibiotics run their course. ValB my doctor didnt give me a script for any reflux meds. I tried Pepto (after reading in a few threads that it worked) before the metamucil trick but I havent used it since. The only things I take currently are yogurt with probitic and half a Vicodin (although this was replaced... [ more ]
FXT Havent updated in a bit. So the doctor suggested I go in for a contrast CT and they located an abscess near the right side butt wall and put me on two strong antibiotics. I should be having another CT in a few days and then possibly a drain inserted depending on my symptoms. (fingers crossed that its not a fistula) I just finished the antibiotics today and everything has been going alright. Metamucil was a godsend and fortunately I havent had butt burn since I started taking it. I have... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can't sleep, had some bad news from doctor today
R rsz
rsz Had surgery on March 26th. Very tough surgery, a lot more pain then any of my previous surgeries. Currently just laying around the house, seems if I find just the right position to lay in and not move I can get almost comfortable. Lots of swelling and constant drainage from butt wound, saw the doctor on Monday and will have to hold off on stitch removal until swelling and drainage goes down. Surprisingly to me they didn't put me on antibiotics saying that they most likely wouldn't help and... [ more ]
itsnotsherry Try wearing boxer shorts, and not sitting upright but kind of lounging. My butt wasn't much of a problem. 7 months later still tender but not painful. My doctor said it takes about a year for new skin to thicken up. Best of luck! [ more ]
Chuckus Where in Florida are you rsz? [ more ]
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J-Pouch ForumsHelp! Need advice now!
leaking poo anyone?
C crazy
Mike Chiolero I went old school when I had night issues. Tincture of opium. Basically it's a nasty tasting fluid that will lock-up your guts, but not give you any euphoric effects of opiates. You might need to press the issue if you want to try it, becuase there can be some dangerous effects if you OD! I go to the VA so my Dr's rotate all the time, this was suggested by my 3rd GI doc and it worked great. He was scratching his head, and told me to, "try this." I'm glad I did. It's a pain in the butt to... [ more ]
Jan Dollar Was your surgery for fissure a sphincterotomy? If so, one of the possible complications of that surgery is permanent damage to the sphincter, leading to incontinence. If that is the case, then thickening the stool is one of the few options. http://en.wikipedia.org/wiki/L...ernal_sphincterotomy Jan [ more ]
crazy sorry it has taken forever to get back on here I still leak every day exspecially during exercise. I take 6-8 immodium a day and started taking tru biotics at night. I also take fiber choice a few times a day. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Atonic pouch now? What else can happen to me?
rachelravenrachelraven
Donna H Oh Rachel, Just read about your dilemma and I am so sorry you are going through all of this. Hopefully you will get some answers and relief after today's procedure. [ more ]
tammykathleen Have you tried taking some gas-Ex to help? Or Pepto Bismol? Both help me with gas. I hope your procedure goes well!! [ more ]
TE Marie I've read of many getting dilated under anesthesia. Jeane is one I specifically remember. You might want to PM her. I hope this clears everything up for you. Good Luck! [ more ]
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J-Pouch ForumsHelp! Need advice now!
At my wits end with this
K kk
crazy She has not had a recurrence and is doing great hope you are better as well [ more ]
TE Marie kk, I wish you could go to an Urgent Care office and get help today. I don't know if they have them where you live. They are walk in clinics but not ER's. I think it would be good to see and Internist and/or Dermatologist as it appears whatever you have is spreading. Please google vasculitis as you might have something like it. My dad's had it too and ended up in the hospital. My insurance company won't pay for the shot until we are 60.Both of my parents had bad cases in their 60's and still... [ more ]
kk THANKS SO MUCH! Hope she is doing good now. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Has anyone had a anal fissure?
J Jodie_31_UK
crazy I had one last year and it was awfully painful i had surgery and took at least 6 months to heal as im constantly going to the bathroom atleast 10 times a day. Good luck i never want to have surgery on bottom again. [ more ]
kellyanne Yes , I had a fissure running from my rectum to my vagina in 1996. Had surgical repair with skin "pulled" over it to "shut it down" was supposed to be hospitalized over night but after the operation it ended up being much more difficult than they expected and was in the hospital for 4 days. They took skin from around my rectum and was extremely painful. But as all of us j pouch patients know, none of these procedures are ever without pain! We know pain! I never had one again ( thank God!)... [ more ]
kta I had something that the doc said he would call a fissure because he had never seen anything like it. It hurt like hell! It healed on its own after I began taking Questran to bind the acids in my stool. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Perianal abscess
DN D. Nocerino
D. Nocerino I'm finding the sitz baths help a lot with the pain especially after a bowel movement. [ more ]
Jan Dollar Even if it is not open, sitz baths help the infection to localize and form an abscess pocket, if needed, or improve the circulation to help the infection heal. Jan [ more ]
liz11 Jan that makes sense. Because once its really an abscess a sitz bath wouldn't even do anything, because it would be closed off. So now if the thing is open, the sitz baths are good because it will help keep it open and draining. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Finally - Surgery scheduled for next Thursday
S Solomin
liz11 solomin. I am kind of shocked that they are doing this laproscopically with all of your previous surgeries. I wouldn't question things if they wanted to open you up to do this. It allows them to do a much more thorough job sometimes if they can see everything. When I went from jpouch to disconnected jpouch with diverting ileo.. Dr. Remzi opened me up. He did not do this surgery laproscopically on me. It was a pretty easy surgery in the big scheme of things. Gut wise, I was fine in about two... [ more ]
Solomin Hi Everyone, Thanks for the info and good wishes. With luck, this will be temporary and leave up to reconstruction jpouch surgery in the neat future. I certainly don't want to have a bag the rest of my life. I am scheduled to drive 8 hours from Montreal to Philadelphia on May 2 (2 weeks after surgery) which is why I was asking about recovery period. Doesn't look too hopeful now. Wishing everyone good health ! Cheers, Solomin [ more ]
vstRN I recently had to go back to a temp diverting ileostomy. Yes, surgery was short - I think around 45 mins? I was in the hospital for 2 days and then driving again as soon as I switched from percocet to tylenol (I think around 5 days). BUT I really could have used longer to recover. I have 2 small kids and not too much help so I usually have to jump back into things pretty quickly. Just wanted to give you worst case scenario in case you don't have too much time. Good luck to you. I hope you... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Humira for 12 Year Old (or maybe SCD first)
Lynne2Lynne2
Lynne2 Thank you for sharing the diet and support tips. Pecanbread has been very helpful and a great source of info during these early weeks. I also draw ideas from GAPS and Paleo. Too soon to tell if it's SCD or prednisone that's working, but he's looking and feeling better already. The real test will be to see what happens when he gets off the prednisone. His doctor is predicting that he will flare again soon, and i hope to prove him wrong! Either way, I firmly believe that this style of eating... [ more ]
Lynne2 I'm so very sorry to hear about your daughter, CedarsFam. It must be absolutely horrible to watch her go through all of that. She is lucky to have such a devoted parent who is doing everything possible to promote her health. I hope things turn around for her soon. Sending best wishes and positive thoughts your way. [ more ]
CedarsFam Hi, I also have a 12 yr old child who has used both Remicade and Humira. She developed a septic hip joint after just 3 rounds of Remicade. The Humira worked well for a full year...injections every two weeks. Used prilocane/ lidocaine 2.5% prior to injections but it just numbed the pain from the needle going in....not the Humira itself. Taking it from fridge an hour prior helped some as well as injecting it slowly. She advanced to weekly doses, then after a 15 day stay in hospital on IV... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Feeling constipated, but having frequency
LaneyLoveLaneyLove
Jan Dollar Another consideration is an anal stricture, which is a common complication, even years post op. More rare is a structural defect of the pouch, where it collapses upon itself when you try to evacuate. It is like a form of prolapse (intussusception). Try the easy fix first by hydrating yourself and see if that solves your problems. If not, time to call your GI or surgeon. Jan [ more ]
Scott F I'd advise everyone without a colon to drink plenty of water, period. Managing your bathroom trips this way is a dangerous game, not particularly effective, and is unlikely to end well. There are much better ways to manage life with a J-pouch, IMO. [ more ]
LaneyLove thanks so much Chris-I admit I am probably dehydrated. I avoid drinking too much to avoid extra trips to the bathroom. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sharp kidney pains
S skimzuma
Jan Dollar Good call! If this is related to Celebrex use, the next symptom could be GI hemorrhage. Celebrex is touted as being safe for the gut, but it has the same cautions as other NSAIDs. It just is less likely to be the cause. Jan [ more ]
skimzuma Since this post I have stopped taking celebrex (200mg 2x day for the prevention of duodenal polyps) and haven't noticed any resurgence of these pains. Unfortunately I think if I want to prevent these pains I might have to discontinue use :/ [ more ]
AllyKat It sounds more like gallbladder. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Severe pain at former stoma site
C Clynn173
Jan Dollar Adhesions can cause problems decades later, and the ostomy site is the most common area for this to occur. I'm not getting this "not until July" business. Did you tell the receptionist that you are a returning patient and having new, sharp pain related to your surgical site? Seems like they are treating you like a new patient. Jan [ more ]
Clynn173 Thanks so much Jan! I am going to go ahead and wait to my GP on Tuesday. He's on vacation this week and booked up Mon. He's been my Dr for years and I really trust him. Thankfully my insurance does not require referrals to specialists, but the surgeons office couldn't work me in before July. I can definitely manage, just hurting. Started liquid diet today, seems to be ok so far. So glad I splurged on a vitamix earlier this year. Going with some pretty plain bannana/yogurt smoothies right... [ more ]
Jan Dollar This sounds like an adhesion causing a partial obstruction. Not an emergency, so it is fine to wait until next week to see your GP. If you are staying home, might be a good idea to call your GP's office back and see if they can squeeze you in on an urgent basis. You probably need a referral to your surgeon anyway, so may as well get the ball rolling. If the pain becomes constant, then skip the urgent care and go to the ER. Unless the urgent care is part of your regular physician system, I... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Pancreatitis anyone
B Bethie
ValB Bethie, has your daughter had her ultrasound? am curious what they found. Is she feeling any better? Just wanted to check in. [ more ]
brittb10 I'm a 21 year old j-poucher as well and have been having extreme upper abdominal pain. It usually occurs in the mornings and then goes away and comes back the next morning. It lasts anywhere from 30 minutes to an hour or longer at times. My GI put me on omeprazole but I'm still having this pain. [ more ]
Chuckus Yes, I concur. It could be a slight bowel obstruction.....it could be heartburn, it could be, it could be...... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Had j pouch 1 week....holy itching!
C CedarsFam
LaneyLove I too am very sorry to hear that your daughter is going through this, and as a mom it must be so difficult to watch her suffer. I continue to have problems with itching, burning etc...I have also tried AD ointment, Desitin, and recently bought Tuck's Medicated Spray (hemhorroid spray) it does burn when initially sprayed, but has provided a lot of relief. Also, when I was pregnant, during my exam my OBGYN noticed how red and sore my bottom was, and suggested I try Crisco...It was strange... [ more ]
grandmaof1 I use dubicaine and 40% zinc oxide. I get it in the baby department. The cheapest place for me so far is at Target. They have there brand of zinc oxide. The dubicaine I ordered it through drugstore.com. I have also got it a cvs in there brand. But it cost more. I put the dubicaine on my rubber glove finger first and then add zinc. I also love my heating pad cause I got sick of being in the tub. Also highly recommend a Bidget. I got just a cheap one with cold water and I love it. I would... [ more ]
Donna H It will get better but I remember how terrible those first weeks were. She is doing very well if she is only having 6 poops a day. I have used so many ointments for pain and itching and I do very well with Calmoseptine for healing, itching and cooling. It must be so difficult to see your child in this situation. I wish you both the best during these difficult days and yes, she probably will take a step backwards but feel assured she will take two forward. [ more ]
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J-Pouch ForumsHelp! Need advice now!
j-pouch vs ileostomy
S SaraJane
mgmt10 My in-law's neighbor had j pouch surgery a few years ago the same time when I had my surgery. She was 80 yrs old and did (and is still doing) terrific. That's a tough descison and a successful outcome will have a lot do with how healthy you are going in. It's a tough recovery. Do you feel you are up to such a complex surgery? [ more ]
Jan Dollar Yes, it is true that it does depend largely on your own individual tolerances. The same holds true for tolerance of an ileostomy. But, the fact is that you have lived with the ostomy, so that is a known factor. It seems that you are also living with bathroom issues too, since you need the proctectomy now. The other factor is your overall health and fitness. Are you a "young" 80-something, very active, fit, and motivated, or more of an "old" 80-something, with a history of difficult surgical... [ more ]
SaraJane thanks for the responses. I have again emailed my doctor to ask specifially how many j-pouch surgeries on an average she preforms each year, and if she has reconnected patients in their 80s, and their outcomes. She is not helpful in being more specfic on most issues, responding to my last note by saying "it depends on how well one tolerates going to the bathroom numerous times per day." It makes me unesy. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Perm Ileostomy and rectal removal
L Lolazippity
Lolazippity They actually didn't even put a drain in me....it is hard to sit but, you are right the worst was over and this was nothing.....went for a little walk today in the park..... [ more ]
skn69 Hi Lola, It has been a while for me...over 30yrs but I had the whole thing removed and my butt sewn up in 79...if memory serves me, it was akward and uncomfortable...mostly...the first week was painful until they pulled out the sutures and drain (I think that the drain was The most uncomfortable part of it) and then it was just achy and difficult to sit for a while (those silly innertubes helped and so did cold compresses)...I think that I was lucky because I was out and about in a short... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Should I get j-pouch surgery??
M Marybeth6207
rachelraven I also didn't have much choice. The med choices of today weren't available back in 1991, and I'd been suffering with UC from 1982-1991. I never was a "sick" UC sufferer, though. Yes, I was a slave to the bathroom, but overall, I never had pain and never felt bad, really. I did everything I wanted as a kid, and no one I didn't tell about my UC was any the wiser that I had a chronic illness. But TPN and high dose steroids in the hospital failed to put me in remission, so surgery was my only... [ more ]
Mahshelley I had UC for 10 years before I finally got the surgery. I had some complications but now I'm fine and its the best decision I've ever made. Yes, you will go to the bathroom a lot, but now it won't (hopefully) be as painful. Good luck! [ more ]
DAVE.L Hi Marybeth I am in the uk I had a pouch done after having Uc for about 15 years. For about 15 years after the opp things have gone very well taking the correct tablets doing what I am told etc, i have been fully active doing many sports at competition level so it has been a success, but we are all different! Here is another possability. I am now 54 and was diagnosed with coeliacs ie wheat and gluten intolerents two years ago, this was not good and due to my already low inability to absorb... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Can I get a Cipro prescription online?
linalina
liz11 Two options Go to your pcp, usually lots cheaper than a GI doc. Or even call your pcp and have them write you a script. Or go to a free clinic. You may have to wait awhile. But you will be able to see a doc and then get a prescription. [ more ]
lina Hi all! Unfortunately, the pharmacist can't renew that here in the u.s. ... And my GI doctor insists that they can't renew it since they haven't seen me in over a year. They were renewing it for me every once in a while, but they finally stopped, and the cost of a GI visit is nearly impossible for me right now. [ more ]
Spooky Getting a prescription over the phone is a good option, if your doctor is willing to do this. I've had my surgeon call in scripts for me before. I'm sure your GI would be willing to do this, especially if your symptoms are similar to what they were before. If that doesn't pan out, can you call the pharmacy where you got your last prescription filled? I'm not sure how it works in your jurisdiction, but in Ontario, pharmacists are permitted to renew certain prescriptions for you, without the... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Rectal/vaginal leakage
L L.DL
L.DL Hey Njk your absolutely right and mine has been none as rectal vaginal fistulas high up . They now need to pin point it exactly where because of the different options that are available. The way the dr. Explained to me is that they will need some type of muscle that may have to be from the six pack abs lol!! Mine have been decorated with thick scares and stomas so we really didn't get into detail. The only thing was that it required lots of work and was quite complicated.... So for no we... [ more ]
L.DL What sucks is these antibiotics make me feel even more nauseated with lack of appetite it's like theres no enD catch 22 as they say.. [ more ]
L.DL Hey jeane ,sorry for not replying any sooner, I have no clue if you read my story but when it rains it pours. To get back to the problem I finally pushed my way thought this new secretary,she thought the mucus was coming via ileostomy,and couldn't understand that we can still loose adequate amounts of leakage analy. So I to am suffering from diversion pouchitiis he put me on the usual cipro flagyle antibiotics plus salofalk enemas the problem is holing them ini put it analy and it comes out... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Wanting to know more on J pouch Removal surgery
S Sharlee
chiromancer Had my take down in mid Oct 2010 and my J pouch removed in mid Dec 2012. My removal surgery was done laparoscopically, lots of adhesions, 4 or 5 hour surgery, 5 days in hospital. I did not have anus removed. Doing well, pretty much no restrictions on what I do or eat very happy with the decision. Would not recommend disconnect and leaving J pouch in place works for some but didnt work for me and many others who have tried it [ more ]
liz11 Had mine removed just over one year ago. Had it disconnected first as my surgeon said I was too sick to do the full removal surgery. Had significant issues just with it disconnected - pain, going to toilet 15-20xtimes, malaise, joint issues. So about 18months later, had it all removed. Big, huge surgery. You want the best surgeon you can find on it. You want a surgeon who has done this surgery many times before. And you also want it done in a facility where there are experts in affiliated... [ more ]
JillM So, I had my pouch done in two steps in 1998 after a 6 month course with UC. Had chronic pouchitis almost from day one. Tried all kinds of things - traditional medicine and holistic - nothing worked. ONly taking 1000mg or more of Cipro helped and that didn't help that much. I still went 12 times a day, had to modify my diet, couldn't eat after 6pm, and was tired all the time. So I decided to have the pouch out. Surgeon convinced me to just disconnect, which I did but it didn't help and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Stool/Blood when urinating
J Jpoucher4life
TE Marie A year to clear a bladder infection, on no! I'm being treated for one now and usually I feel better after a day or two on antibiotics, not this time. I hurt on the outside too. Is that normal too? I'm using an antibiotic cream externally, bactrim. [ more ]
Jan Dollar It could stop and start like that, epecially if there were clots that took a while to break down. Antibiotics might help with a fistula, but if it is there already, antibiotics would probably just stop it from getting worse. It would take months or longer to get it to close that way. But, sometimes just keeping it small and not draining is enough. I still would not assume this is a fistula, at least not yet. Sometimes bad bladder infections are just that, and just need more intense therapy... [ more ]
Jpoucher4life Thanks! Would old blood last for a few days stop and then come back? I did go to my general doctor and I for sure had a bladder infection. Would getting on antibiotics stop a fistula? [ more ]
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J-Pouch ForumsHelp! Need advice now!
new left sided groin / hip pain
E EP
EP Thanks for responses. Swelling got much worse and huge lump going down thigh, hot to touch and unwell. GP insisting DVT so had ultrasound which showed it wasn't so then have to wait for another scan. Started on antibiotics. Pelvic floor exercises ain't gonna fix this one! [ more ]
NJK see your doc and then the doc can refer you to a pelvic floor specialist. However since this is new and you have had your pouch for so long I doubt it is pelvic floor disorder. but like I said see your doc. [ more ]
Gizmo see a pelvic floor physical therapist! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Am I sick or should I be concerned ???
PouchomarxPouchomarx
Pouchomarx been taking temp periodically all day and night and it has been constant 98.0 f [ more ]
Pouchomarx Thanks Jan, I called off work Tuesday cuz I woke up feeling like death. but been at work since. like a said its the headache and body aches with maybe low grade fever which I will find out today when I get that thermometer. I have felt warm in past when sick but thermometer never indicated that. [ more ]
Jan Dollar My primary concern for you is the fact you are on Entocort and have chronic disease (even if it is under control presently). This puts you in the position of reduced immune response (although Entocort is much better than systemic steroids). This can mean that you are contagious longer than other people with this virus, and you may be more susceptible to complications. If your symptoms keep up longer than 10-14 days, or become much worse, you probably should see your primary doctor, and... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Ishorectal abcess
G Ginabello
Ginabello Thanks Jan my doctor had a X-ray done for blockage and blood work to check for infection both were fine.. I am having a scope on the 2nd and he wants another ct scan..I just have so many more aches and pains very bad back pains and under left and right breast bone that radiates through my back.. I also feel like i hit a wall from feeling good and then the energy is sucked out of me..it becomes more intense before my period can there be a connection? One more strange thing is the inner... [ more ]
Jan Dollar Sure, any of that stuff is possible. However, not likely if the perianal abscess is draining. The reason is that fistulization occurs when there is pressure from the abscess and it is seeking an exit. Since it is draining, there is no pressure. What is most likely is that the pain you are experiencing is from contracted scar tissue within the muscle. Working on an eliptical really gets those large muscle groups working. Hopefully, with time, that pain will ease up as the scar tissue is... [ more ]
Ginabello Thanks Jan I am seeing my doctor today for the light headed feeling know I am lacking in something? Is there a way they can tell if its coming back I'm still dealing with this perianal abcess that was done at the same time.. My doctor says its not infected or no abcess is forming again but it drains a lot.. Can the 2 connect as in a fistula is that possible? Only good thing besides the draining and feeling like I can hit a brick wall at once pain is minamal at best I'm alright with it? It's... [ more ]
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J-Pouch ForumsHelp! Need advice now!
ileostomy
J JLew
Hobbes650 Perhaps the surgery has to remove the blocked portion and reconnect the j-pouch, so the surgeon may want the pouch to heal for a bit. Or some other reason that would cause the j-pouch some needed rest. Every time I had problems I needed a temp ileostomy. Since you've had an ilesotomy before, my guess is that it was a temp loop ileostomy and I would think you'd be getting that again. Only real question I'd want to know is how long before the takedown. You won't have to worry about diet at... [ more ]
Pouchomarx That's odd.. why would you have surgery unless the blockage will not clear itself? when I had a partial blockage, the did NG tube, bowel rest, and pain meds. in hospital for a few days. no surgery though.. i'm confused?? [ more ]
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J-Pouch ForumsHelp! Need advice now!
PCA or Epidural
J JJR
kathy smith JJR - glad you're home and on the mend. It does take awhile to bounce back. But you'll get there. kathy [ more ]
JessGoguen Are you having a 2 or 3 step process? I don't think you'll need it for takedown if it's a two step lapro. I was on pain pills by the next day. It also helps the guts wake up if you can move around. I had a two inch incision where my stomach was due to scar tissue but had minimal pain. I am nearly 4 mos out and feeling awesome. It's nice to not be miserable w UC symptoms. [ more ]
JJR I thought I would followup on my decision. I decided to go with the PCA for Step 1. I was told that the epidural may not cover all of my incisions. I will likely do the epidural for my takedown surgery though. My surgery was successful, with a few minor hiccups. I was told the surgery would last about 4.5-5.5 hours, but because of my build it turned into an 8.5 hour surgery. I had some vocal cord damage from the intubation. It is slowing healing, but I may still need to have an ENT repair... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Same song different verse?
G Gigi68
Kia It really wouldn't have been a choice for me at the time I had the colectomy and J pouch in 1990. No medications available at the time were working and I was down to 89 pounds. I still feel fortunate, though, bc the J pouch surgery was an option for me. Since I was so young, I was glad I wouldn't have a permanent ostomy. I have had complications but I would still do it over again. I waited 5 years before I was willing to go through with the surgery. I was so young and afraid. I would have... [ more ]
skn69 Gigi, For a lot of us it was a 'non-choice' and for others it was not even a discussion...They woke up with 1 less colon and 1 new apparatus...others were given meds, drugs, options and choices... I was halfway in the middle...I tried every med out there, lived off of immodium, gravol, opiates etc from 9-18 and finally after all sorts of alternative treatments (no, chiropractors cannot cure us, nor can 30 days fasts, 3xs daily enimas with various juices in them, epsom salt lavage etc), I did... [ more ]
ValB Gigi, the surgery saved my life...I posted this under Success stories pls for SandyK: "I consider myself a success...my surgery (31 years ago) was experimental and no one was totally sure what would happen. With the exceptions of catching stomach bugs (they really suck) and only one case of pouchitis, am doing well. I still have bad nights and sometimes days where for seemingly no reason things decide to act up, but the good ones more than make up for it. When I consider where i was at 15,... [ more ]
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J-Pouch ForumsHelp! Need advice now!
21 Year Old J-Poucher, Advice Needed
I Iainmacrfc
Kia Glad you have found some relief. I have not had spasm issues, but I just read a post by CTBarrister in the last day or so about treatment for this. If he doesn't reply soon, you might want to do a search on his recent posts. I hope you continue to improve! [ more ]
Iainmacrfc Many thanks to all that responded once again, some heart felt replies from those who've experienced similar problems to me! Thank you all Had my pouchoscpy on Friday and I'm relieved to say I only had mild inflammation and no prolapse. He put me on a short dose of flajyl and loperamide. I've now developed a new problem which is spasms in my backpasage after releasing my pouch. Any ideas how to soothe this, the only method I've found so far has been sitting in shallow water for 15 minutes? [ more ]
Kia So glad you found this forum. It is an incredible blessing! My history pretty much mirrors yours, including the approximate age time line, except that I am a good bit older than you now. I believe I've been walking around with undiagnosed pouchitis for 13 years. I found this forum and the right doc through this forum. Within less than two weeks I was diagnosed with pouchitis and put on Flagyl. My symptoms nearly disappeared after 16 hours on the drug. Last week I had some issues tolerating... [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
Advice????
B beckysmom
beckysmom Thank you Jan, Sharon and Scott. There has been a lot of opinions on how to proceed. We are hoping that if this area needs to be dilated, that it can be done at that time and also a more definitive diagnosis can be made. [ more ]
Jan Dollar Surgeons cut and GIs ave a medical focus, so it is not too uncommon for there to be conflicting opinions on how best to proceed. For me, I like to use non-invasive methods for diagnosis before resorting to surgical exploration. So, the GI's approach appeals to me. Sure, it could come up as a dead end, but I'd go for that before more surgery. I also agree that biologics without a reasonable indication of an appropriate diagnosis doesn't make sense, especially since they could take up to 3... [ more ]
beckysmom Thank you Sharon. You have always been a source of inspiration for me. Procedure scheduled for April 2. [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Surgery after J-pouch
G Gibs
kathy smith Wow! You ARE sort of unique. Don't worry about it. And if it happens, medical staff are used to it. I think that many times women who are delivering their wee ones experience this because they're bearing down so mightily. As Jan said, the anesthesia must slow things down. And they they start giving you pain medication after surgery which slows things further. But usually before elective surgery under general anesthesia (or General Anastasia as my friend calls it) you'll be reducing or... [ more ]
Jan Dollar Don't worry bout it. I've had a number of procedures, and was fine. Must have something to do with the anesthesia given, slowing the gut. Even when I had a cardiac cath procedure without general anesthesia, and had to stay on bedrest for 8 hours afterwards, I was fine. Must have been the awesome sedation given during the procedure. I did take extra Imodiun the morning of my procedures without a general anesthetic. Jan [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
1 year post takedown
G Gibs
lovedby2 My rectum was removed as well as all of my colon. I have a functioning Jpouch. I have a lot of pain still in there, at times I can't sit directly on my butt, more on one cheek is better. I was told by my surgeon that yes it can actively spread if you still have partial colon and rectum left after Jpouch. [ more ]
Gibs I guess overall I'm fortunate with my outcome. It's a little concerning about the disease spreading to the left behind remnants of colon/rectum, how common is this happening? Is it something that eventually happens to everyone? And if surgery is needed to remove what was left behind the first time, what kind of lifestyle are you left with? Is the j-pouch still functional without a rectal stump or do you have to go back to an ostemy bag? I don't think I could handle the bag again. [ more ]
lovedby2 Is it all of your rectum? I know from my 1st surgery to my 2 surgery my rectum became diseased and they had to remove it, attaching everything to a small stump. Then my takedown on the 3rd surgery.... Painful 2nd and 3rd surgeries, as far as recovery. I was also told by my Dr that if any mucosa was left behind it can carry the disease and cause bleeding. I was told at my last colonoscopy that a strip of mucosa was left. [ more ]
See all 7 replies...
J-Pouch ForumsHelp! Need advice now!
J-pouch removal due to multiple health issues
Maggie MaeMaggie Mae
Cataja I gave up my j-pouch in '09 and went to an end ileo...I have asthema and chronic bronchitis...never had any docs tell me they were related... [ more ]
Jan Dollar It very well could be making you sick. You certainly would not be the first one with a failed pouch or a pouch that causes too many other problems. It is rare, but not unheard of. Unfortunately, it is difficult to know for sure. In the long run, I think your gut instincts are probably true. Jan [ more ]
Maggie Mae Thanks for all the info. I also believe my pouch is making me sick. I cannot prove or explain it. Just a gut feeling. [ more ]
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J-Pouch ForumsHelp! Need advice now!
So frustrated... STILL in pain
M magsroo
TE Marie I'm sorry that it sounded like you should have every test there was, or as Jan said "an over kill". That's not what I meant. I meant the tests indicated from the tests given regardless of the specialties. A CT scan or pains might indicate a gyno and a GI test. Patient history could also include neurological, psychological or other problems. I've had the run around of going from one specialist who says the problem I have isn't in their area it's in another specialty. I've gone to the other... [ more ]
Jan Dollar Margie, I am so sorry that you are getting this treatment from the very people who are supposed to be caring and helpful. You'd think that people working in the medical service field would have some natural empathy and compassion. But, my experience is that for whatever reason, sometimes people gravitate to exactly the wrong job for them. They not only lack compassion, but they actually seem to dislike people. Why on earth are they working in a people oriented job? I can understand being... [ more ]
magsroo Oh where to start... I guess when I get up the point that I feel I need pain meds, it is a real need. I do NOT like to ask for them. Drs have made me feel like I'm asking for something illegal and unnecessary so I have to be in bad shape to even ask. It's sad that its like that. But it doesn't help that these people in these medical offices are so apathetic. The nurse treated me like I was annoying her and said I'd just have to wait it out. Who talks to someone like that??? How would she... [ more ]
See all 21 replies...
J-Pouch ForumsHelp! Need advice now!
IVF next week - but now the doctor say: wait!!!
L LoveLife
LoveLife Thank you. Now here's my interesting update. I spoke with the surgeon today, he knows my history just as well as the medicines. He said: 'I wouldn't be that worried. I am not God, though I sometimes would like to be, but based on my 25 years of experience I would say: go for it!' So my partner and I decided to wait another month to let my body restitute, and then go for it. [ more ]
Scott F "GI system" means "gastrointestinal system." It's basically your stomach and intestines. Sorry for the confusion. [ more ]
JillM Also, I had an obstruction during my first pregnancy (I have a perm ileo after failed j-pouch) and nothing, I mean nothing, is scarier than them saying "you might need surgery" when you are 20 weeks pregnant. So you may want to be sure that the obstructions aren't going to be chronic, or see if there is some explanation for them. [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Anal urgency and pain
F Fazz
Gizmo Sounds like it could be muscular. Your doctor can write you a prescription for physical therapy and you can go to a pelvic floor physical therapist. They will examine you and work on the issue. It could change your life. You can find a pelvic floor physical therapist near you by searching on the APTA (american physical therapy association) website under FIND A PT. [ more ]
Jan Dollar IPS usually has the same symptoms as pouchitis, but without inflammation. The symptoms are not acutely associated with bowel movements. Fissures have pain localized in the anus/sphincters that is associated with bowel movements. You can have more than one thing going on. Jan [ more ]
TE Marie Do you think it could possibly be IPS. Irritable Pouch Syndrome? I was diagnosed with this along with my cuffitis. I'll look for the paper written by the doctors at the Cleveland Clinic featuring Dr. Bo Shen about it and post the link. Here's the link discussing Pouchitis, Cuffitis and IPS: http://www.lerner.ccf.org/path...hen2002AmJGastro.pdf [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Dr Hurst Uof C medical center?????
B beckysmom
wolfpac tim They are a great hospital. I also had mine done with doctor Sac at Rush. I always hear great things abou U of C [ more ]
beckysmom Thank you both. We are besides ourselves. She just had a pouch revision in May 2012 and then an emergency strictureplasty done in Jan and now this at the same site. This is her old loop ostomy site. Dr. Rubin, her GI there, does not think it is crohns. This would be the third major surgery in less than 10 months. [ more ]
tertenpin I have heard of him as well. He is one of the best; I know someone who had their j-pouch done with him, and they had great things to say about him. I went with Dr. Saclarides at Rush, though, and he is awesome! He is at Loyola now (which is in Chicago, but just outside of the city). Great personality and knows his stuff! [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Nothing but trouble since connection surgery...losing weight rapidly..read on
P Pixiegirl3650
Jan Dollar What concerns me is that this may not be pouch related per se, meaning just because these symptoms began after your pouch surgery, it does not mean the issue is with your pouch. I would not be surprised if it is adhesions, and not your pouch, that are causing the symptoms. Adhesions would not show up on the CT unless they were causing enough of an obstruction to dilate the intestines. The problem is that surgical release is pretty much your only answer. I presume you have tried Pepto Bismol? [ more ]
Pixiegirl3650 My surgeon hasnt been helpful at all. I have every otc gas relief stuff. I thought relieves means takes away...but w me it just moves it around. I was in the er yesterday. I do have slight pouchitis and am on flagyl. My blood pressure was low. They did a ct scan and the contrast made my insides so horrid and it kept flying out over and over. I even try cutting myself off from eating and drinking by 7ish. Nothings working. Granted the pain doesnt last all day but only when i eat. I just dont... [ more ]
vstRN Sorry you are going through this. Just another thought, has your GI ruled out a bacteria overgrowth. I had such painful cramping and gas that I couldn't release not too long after my takedown. 2 weeks on Xifaxin made a huge difference for that (although I have so many other different problems I'm dealing with. Good luck, I know it is hard [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Trouble after surgery #2 of 3
U UCfree2012
Jan Dollar Yes, or it could be reactivating, laying dormant until your resistance is low. But, don't feel stupid, most doctors "knew" that you could not get C. diff in the small bowel, so removal of the colon would cure it. But, alas, they were wrong and numerous cases of small bowel C. diff were later documented. Jan [ more ]
TE Marie Jan, I fell really stupid, I thought c-diff was only in the colon and/or j-pouch. Hello the j-pouch is made out of the small intestine. So could part of my continuing all the time pain be a simmering c-diff in my small intestines that gets worse every once in a while? [ more ]
TE Marie I'm glad you are doing better and are at home. Maybe now you can get some rest! I hope they test your output a few weeks after your course of antibiotics. I've had too much experience with c-diff and Jan mentioned it. You have to wait that long after taking antibiotics to test. I'm glad you are home and on the mend [ more ]
See all 12 replies...
J-Pouch ForumsHelp! Need advice now!
Recent Takedown
C Chris_JPouch
TE Marie Are you taking metamucil like fiber and imodium? I was on a lot of it under the direction of my surgeon following my surgery. I took Metamucil in the gelatin filled caps as I hate swallowing it. Some folks like the wafer/cookie like form. The secret is not to drink all of the water it says at the time with it. This allows it to soak up more water in your j-pouch and thicken your stool. This does not mean you are to hold back on drinking all the water needed to keep your self hydrated daily. [ more ]
Murray Sounds like you might have a small blockage.I was like that and an xray confirmed it once it was gone all was good. Murray [ more ]
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J-Pouch ForumsHelp! Need advice now!
Cleveland clinic
P Pen
liz11 are you sure they don't take your insurance? I have some kind of blue cross insurance and they definitely take my insurance. I suggest you call your insurance company directly ANd or CC and find out for sure. [ more ]
TE Marie A few suggestions: Ask whoever is referring you to refer you to a Blue Cross physician. Also call Blue Cross and ask them if they cover it if you are referred to CC. [ more ]
See all 2 replies...
J-Pouch ForumsHelp! Need advice now!
I am so over having a JPouch!
Not your average gal!Not your average gal!
Jan Dollar Sorry, Paul, I did not mean to offend or belittle you. Poor choice of words I guess. I just meant that some docs are strictly business, and do not have much in the way personality or bedside manner. This can be quite off-putting for some, particularly when they had to wait a long time for an appointment. Jan [ more ]
pauln jan dollar,i can assure you my comments do not mean i wanted dr shen to hold my hand in your words,i have legitimate concerns and no amount of attempting to belittle me personally will work,all i was doing was commenting on my personal experience because i did not say he can walk on water does not mean i believe he is a bad doctor,point is maybe we did not click personality wise. pmj [ more ]
TE Marie pauln, I was diagnosed, along with cuffitis, with IPS by my Mayo GI last summer. I still have daily pain when cuffitis free and am taking an antispasmodic and Norco, hydrocodone & tylenol. They also say I have adhesion pain as have ruled out strictures etc. One antispasmodic I tried made me throw-up so I'm back to what I took when I had UC, dicyclomine. I had IBS too. I don't know if it works or not as I'm still in daily pain. Has the medication Dr. Shen prescribed for you helped? What... [ more ]
See all 39 replies...
J-Pouch ForumsHelp! Need advice now!
Crohn's and pouch advancement?
J jeane
TE Marie It took months to work for me. Not a quick thing as my local GI and surgeon were expecting. I kept trying Anucort then Canasa then Anucort etc. I had been off and on them for almost 4 months before my GI sent me to Mayo. The Mayo GI Specialist said to use Canasa until it worked and gave me a 6 month prescription. I think it was jeanne that told me it took her 3 or 4 months of steady use to go into remission with Canasa but both of us have it recurring. He told me after it was better I needed... [ more ]
RLC TE Marie - I am one of those that is allergic to asacol. My surgeon prescribed canasa and I told him about the allergy but he said the body wouldn't react the same. I have taken it on and off and don't seem to have a problem with it but again, it isn't a cure. I did use it the other day to try and stop the bleeding and it seemed to work. Always trial and error with all these meds. Happy weekend - Roberta [ more ]
TE Marie I am so sorry the suppositories are not helping you at all. Are you having side effects like we get from prednisone? I didn't notice any side effects when I was on the Anucort but was so miserable and had c-diff too so don't know if I would have noticed or not. I've found out on here that some people were allergic to Asacol, or mesalamine, before the surgeries. I took it for years. Obviously it didn't keep me from having the surgeries. Mesalamine is the ingredient in Canasa so I didn't have... [ more ]
See all 29 replies...
J-Pouch ForumsHelp! Need advice now!
getting a mucosectomy
M Maximaus
TE Marie Maximaus - I don't remember if we heard how your surgery went? How are you doing? [ more ]
Pouchomarx does a mucosectomy require a temp ileo? if not why not just load up on pain meds for the pain? [ more ]
TE Marie Good luck on your surgery. It's been a painful 10 years for you and it would be wonderful if you were pain free. I've been wondering if I am eventually going to need the same surgery for my chronic cuffitis. Please let us know how you are doing. Take Care [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
Gas pains? Muscle strain? Worse?
K KCookie
kathy smith Yep, it's often quite a bit worse for the non-patient. But it's wonderful that he has you as his advocate. kathy [ more ]
KCookie Thanks for the response. He is feeling a bit better, but is having to pop his hernia a bit more than usual. I just constantly worry about him. It's terrible watching the one you love be in any discomfort or pain. He's the 'strong' one in our marriage, not me, so it's difficult to put on my game face, which makes me feel really selfish since he's the one with the disease. I just want to cry out of fear, anger, and frustration all the time! Thanks for listening. [ more ]
kathy smith It could be muscle strain. But just to be on the safe side, you should give his doctor a call. kathy [ more ]
See all 3 replies...
J-Pouch ForumsHelp! Need advice now!
Does anyone else experience this? Advice please!
M mads101
lovedby2 I experience a sharp pain once in awhile on ny right side just below my rib cage. It hurts a lot! Not sure what it is? I was associating it with my abdomen scar, locate on ny right side next to my belly button, but I don't think its related. My scars don't hurt. Heidi [ more ]
Jan Dollar Hopefully, it will not persist and you won't have to address it. Here is a link about mittleschmerz. http://en.wikipedia.org/wiki/Mittelschmerz Jan [ more ]
mads101 Jan, Thanks so much! I will definitely keep that in mind. It seems to come and go, but it is not at all like period cramps or anything. I am so glad to have found this site, it really has helped. Thanks Again(: [ more ]
See all 4 replies...

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William J. Johnson
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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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