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J-Pouch ForumsGeneral Discussion
Starting VSL
P Pluot
dgtracy I started off at a one packet per day, i did have increased BMS a bit but idk about gas...i know things were very loose for the first day or two but quickly stabilized. [ more ]
phonix2g I felt the same when I first started taking it. It is a very strong probiotic and you are sending in the calvalry to take over. Your system needs to adjust to the good bacteria flow that is traveling throughout. Bloating and cramping and even increased bowel movements are completely normal starting out. Yes, I would increase you dosage slowly because some people actually get sick and throw up from higher doses too quick too soon. If you eat yogurt I've found the powder actually compliments... [ more ]
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J-Pouch ForumsGeneral Discussion
What is going on with me?
G grandmaof1
Jan Dollar Yes, call your GI. He may suggest increasing the dose of Cipro. If your symptoms stay the same or get worse, then more of a chance it is C. diff. He might have you start Flagyl instead. Anyway, there are multiple ways to approach this, and best to touch base with your GI, even if it is just to tell him what is going on and what you planned to do. If you do decide to stop the Cipro, I'd give it a few days before starting the Pepto Bismol, just so you can tell what effect each change has. Jan [ more ]
Scott F If it is C diff just stopping the Cipro won't fix it. Best to discuss some steps to take with your doc, if at all possible, rather than just making it up. And Jan's idea about getting tested for C diff in advance, if you can work it out, is superb - the sooner the better. [ more ]
grandmaof1 Oh good idea Jan. You are so awesome with all your information you have. Maybe I should just stop the Cipro and see what happens. And if I do stop I could start taking pepto bismol. Thanks so much. It is greatly appreciated. [ more ]
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J-Pouch ForumsGeneral Discussion
Its Like Night and Day
P phonix2g
phonix2g I did notice leakage after I was dilated in the office with just his index finger. He told me that it would be normal to have some leakage especially because of the spasms I've been having in my other sphincter muscle that is totally out of my control. [ more ]
Jan Dollar Well, you CAN have some temporary incontinence after dilation because of trauma to the sphincters. It all depends on how long the dilation takes and how much the sphincters are stretched. But, it is temporary. Jan [ more ]
Scott F Valo, the sphincter (which is *supposed* to hold in poop) doesn't get dilated, so it keeps working just fine. The stricture is internal. [ more ]
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J-Pouch ForumsGeneral Discussion
muscle/tissue damage from long term metamucil?
J jeane
TE Marie I use the clear capsules not the hard pill type ones. Like the prescription Imodium, Loperamide 2MG capsules, work better than the OTC Imodium. They get into my system quicker. If it causes a problem then you are right, don't use them. I'm suggesting an alternative to drinking it. I found myself not taking it as often as I should and these were the answer for me. Side note, I love the prescription Loperamide because it allows me to tell how much I need to take because it gets into my system... [ more ]
Scott F For some folks the capsules don't mix well with the poop (depending on things like transit time and consistency). Pay attention to whether you see little pockets of former capsules - that's why I abandoned them. Also: I believe you can get unflavored psyllium husk (maybe Konsyl rather than Metamucil). You could then make it palatable in whatever way works best for you, though it might take a little fussing. [ more ]
jeane Thanks TE Marie, Maybe I will try the capsule route as I feel they put FAR too much sugar in the Metamucil and it really leaves a lousy after taste that stays with you. [ more ]
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J-Pouch ForumsGeneral Discussion
Been a while, nice to see you!
Mental KaseMental Kase
Mental Kase Jan, Wonderful that you can still get by with Norco since that is a tough one to stick with on the Opiate ladder. There is also that distinction between the physical 'dependence' and 'addiction' which is a somewhat different issue. I don't subscribe to the idea that if someone happens to feel a bit of euphoria with their pain meds that they should label themselves an 'addict' for it. Euphoria is a documented medical feature of opiates so no need for people to beat themselves up about it. [ more ]
Jan Dollar Best of luck to you. Yes, unfortunately, this is a common tale. With opiates, things are good when they are good, but eventually you need more for the same effect, even if your pain levels remain stable. So, long term, they are more of a curse than a blessing (sort of like prednisone, which can be a wonder drug--short term). I live in fear of similar challenges since I have chronic pain with my arthritis. I really grumbled when my rheumatologist wanted me to step up my Norco because I was... [ more ]
Mental Kase Thanks Scott, Yes, I will need to be open to all alternative options. MK [ more ]
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J-Pouch ForumsGeneral Discussion
Very Watery Stools - Pouchitis or NOT?
J Jpouch8888
Edee Hi Jpouch8888, Did your problems resolved in the end? What caused them? Was it pouchitis or stomach bug? I'm having same problems with k-pouch right now :-( How are things with you now? Thanks, Rachel [ more ]
Jpouch8888 Just overnight I went from extreme watery BMs to very thick stool. The thick (almost constipating) BMs are typical for me after being on Cipro for a few days. My body is confusing the heck outta me. Haha If BMs stay too thick do you think I should take some stool softenrs? Milk of magnesia until I'm off the Cipro to ensure I'm emptying completely? [ more ]
Jpouch8888 It is now day 4 and I still have VERY watery bowel movements. It is also day 3 of Cipro. It is like a huge gush of liquid coming out with each bowel movement. No pain or irritation. Appetite is less than normal. Very slight nasea now. I called the on call doctor and they said come to the ER if it doesn't improve, I get fever, etc. Do not think she had any idea. hmm...this is driving me crazy! If I had cramps, I would think it is pouchitis, but this is just lots of super watery bowel movements. [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis with blood?
LesandiegoLesandiego
Jan Dollar If the bleeding started since the Advil, you should presume it as the culprit, if not at least contributing, even short term use. Jan [ more ]
Lesandiego Doctor said I have pouchitis. He said advil will cause bleeding, but he did not seem too concerned about it, or admonish me or anything like that. [ more ]
Scott F Well, Flagyl isnn't the usual way of evaluating possible hemorrhoids, but if the bleeding stops promptly after starting Flagyl the hemorrhoids are a much less likely explanation. Hemorrhoids don't have to bleed every time. They're just basically swollen, exposed, fragile veins. When we bear down to poop (which varies by person and by consistency), we increase the swelling a bit, and sometimes they bleed - the amount can vary a lot. [ more ]
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J-Pouch ForumsGeneral Discussion
Incontinence
B BarryY
BarryY Thank you all for your responses. I have a lot to think about and work with. Barry [ more ]
Debra My leakage is mainly caused by sphincter spasming due to strictures (yes I have had surgery) and fissures, which just aggravates the spasms more. [ more ]
phonix2g Haven't really had an issue with leakage since about a month after my takedown. I just went to see my surgeon and he ended up dilating me there with his finger but said I had a stricture that needed to be dilated with a tool that would stretch it out more. The surgeon asked if I was having any leakage and the reason is because he noticed when he dilated me with his finger that my sphincter was moving a mile a minute. I told him yes I was having leakage and it was clear and he said it was... [ more ]
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J-Pouch ForumsGeneral Discussion
Hyoscyamine
P phonix2g
Jan Dollar Maybe your dose is just too high. Some people are really sensitive to these alkaloids. Jan [ more ]
ActiveUC'er I took hyoscyamine when I had my colon still (no surgeries). It never caused a problem. It's a drug that's supposed to stop digestive spasms (which in turn decreases digestive pain). It's not a build-up drug like other medications, so you can stop and start taking it as you please. You can probably experiment. Sorry I don't know how to explain the messes. [ more ]
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J-Pouch ForumsGeneral Discussion
Rectal bleeding with ileostomy and future j pouch?!?
S sally85
liz11 I was given hydrocort suppositories and they worked the first few months and then nada. So I just let it be, as I only had 6months to wait for the rectum removal and jpouch creation part. the Canasa might work for you. So be optimistic. I will cross fingers for you. As I know its best to try to get preggers before you have more surgeries. good luck. [ more ]
sally85 Thank you so so much for your help guys I really appreciate it, I've got an appointment with my GI next week lets hope he says I don't need any meds, steriods gave me steriod induced psychosis prior to my surgery with really bad effects so I need to avoid them at all costs, my only downside was I was hoping to hold out with the ileostomy for another 2 years to try and have another baby but if I think realistically I don't think having this remaining bit of the colon in me the way it is is... [ more ]
Pluot Hi sally, I had three steps with a pretty severe flare in the rectum and sigmoid colon that was left in after my step 1 surgery. I ran low grade fevers on and off for the entire time I still had the rectum and sigmoid, passed bloody mucus multiple times per day, etc etc. My GI had me try Canasa (mesalamine suppositories) which did nothing but increase urgency, but my surgeon didn't want me to use topical steroids as he felt it would adversely affect the tissue moreso than active... [ more ]
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J-Pouch ForumsGeneral Discussion
CC waiting times
T tiesto81
ActiveUC'er I know this is old, but I just want to say that I have had Dr. Remzi and Dr. Ashburn as my surgeons. Both are great. Dr. Remzi removed my colon and will be creating my jpouch someday. Dr. Ashburn saved my life three months ago via a series of emergency surgeries. [ more ]
Uc-Danielle Remzi is my surgeon if you can wait if wait! But a long with liz11 I am a problem child. Dr ashburn, was in all of my surgeries and she is great! She is a favorite of Remzi and then again I've been told I am VIP of Remzi idk it that is good or bad! [ more ]
liz11 There are many fabulous, knowledgeable, experienced colorectal surgeons at CC. Remzi mainly deals with the problem cases. So if you are not a problem case, yes you will have a very very long wait to see him. And then even longer to get surgery scheduled. I might suggest you see another CC surgeon - stocchi, dietz, ashburn (new but supposedly good), or one of the others. I am a Remzi patient - as I am a problem child! But I have been cared for by stocchi and dietz post surgery in the hospital... [ more ]
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J-Pouch ForumsGeneral Discussion
surgeon experience, pouch advancement surgery and outcome
D dukee11
jeane I agree with Scott on this one. When I was having many issues (I still am at times) with my stricture at the anastomosis and was being recommended for pouch advancement surgery, my GI who trained at CC, did not hesitate for one moment to send me that way for my consult due to their experience with pouch redos. Good Luck. [ more ]
Scott F I would only choose a surgeon who performs pouch advancement regularly. That probably pushes you to Cleveland Clinic. [ more ]
Jenny Mac I had my colon removed at Hopkins-- in 1993 due to Ulcerative colitis. I ended up not having the J-pouch until last year (2012.) Other than insurance and employment issues, I don't know what I was thinking. Dr. Efron was amazing. I can't imagine being in more capable hands anywhere in the world and I was a bit of a weird case. A few issues between stage 2 and 3, but life is now wonderful without a colon or an ostomy. I feel like he gave me my body back, intact and whole. [ more ]
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J-Pouch ForumsGeneral Discussion
Passing undigested food
DebraDebra
CTBarrister lixxie, if you see a whole pea it could also be a sign that you need to chew a little better!!! What I usually see in the toilet is chewed lettuce. You can only chew lettuce so much. But the recommended 28 chews should result in a whole pea being reduced to something less than a whole pea. Everyone should remember we are humans, not wolves, so food should not be wolfed down whole. This is especially true for those with J Pouches. [ more ]
lixxie Funniest sight is flushing the toilet, then looking down to see a freshly cleaned, whole pea just bobbing up and down in the clear water! Those suckers don't flush easily. [ more ]
Jilly I see almost EVERYTHING in my poop. If I eat a lot of sweets or chocolate, then my poop literally smells like sugar or chocolate. It definitely grosses me out when I see little pieces of orange in the toilet after eating an orange the night before. Chewed-up apple comes through looking like I could hose it off and run it through again! Tomatoes and red bell pepper, too...! I could recycle or reuse those as well! Truly, it would be easier and simpler to identify what I Can't can't see instead... [ more ]
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J-Pouch ForumsGeneral Discussion
peptides
A ARP83
vanessavy I Find this interesting! Are you blogging!? [ more ]
Jan Dollar OK, I can see where you are coming from. And sure, lots of promising treatments are dismissed out of hand because of rampant illicit off lable use. Do you expect to need this indefinitely, or do you expect your gut to adapt over time and not need this treatment? I see you are not very far out from take down, and most of us see improvement over the years. It is helpful to know what your issues were and the fact that other treatments failed to help. Still, this is still more "edgy" than most... [ more ]
ARP83 I was having poor malabsorption, was still anemic and having massive BMs. I was looking for something else as all the options werent working as well. My job is govt related and i didnt want to piss away 12 years. It has been working amazingly my weight is back up to a healthy range and bloodwork shows eveything is back to above average. I can break down what the two do together and what actual GH does inside the body. Scott yes there isnt a lot of studies done as again as i stated before... [ more ]
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J-Pouch ForumsGeneral Discussion
Frequent trips to the bathroom
J JsWife
dgtracy a great way to get rid of gas if he is willing to try it (i know i was scared at first) is to lay on his side, left or right whatever is comfortable..sometimes i will even use my hand to part my cheeks a little, its a relief (and unfortunately can only be done at home, might look a little funny if someone walked in my office and some me on the floor doing that...) another great way is when i am on the throne if i leaned back, even arch my back a bit idk if its the position things are in but... [ more ]
JsWife Excellent information! It is so comforting to hear advice and encouragement from all of you who know and understand what he's going through. Regarding dairy, he was avoiding it prior to his surgery but has been eating/drinking it recently... he'll go back to Almond Milk to see if that helps. He does seem to have quite a bit of gas and has only passed it while being on the toilet. As for a follow up with his surgeon, he went out of state for surgery so we've been in contact by phone with his... [ more ]
mgmt10 The one thing many surgeons fail to tell us with this procedure is to have tons of patience. I do remember my surgeon telling me that the first few weeks would be "crazy". (His exact words) It does all calm down but I when you are in the thick of it, it seems to never end! Tell him not to worry...this is all part of the healing process. The body needs to adjust to its new plumbing and it doesn't happen over night for most people. Since he sounds like he's prone to getting backed up, Imodium... [ more ]
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J-Pouch ForumsGeneral Discussion
Going back to the ileostomy - is it the right decision??
H hotaru
kmj I had my j pouch removed two weeks ago after having it for almost 7 years. I had problems with it right away and they continued the entire time I had the pouch. Chronic pouchitis, took cipro and others for 6 and a half years. Tried humira and cimzia. Off and on prednisone, basically on it the last year straight. I work 4 hours a day and that was about it, I rarely left the house after work and slept terribly everynight. It just got to the point I knew I could no longer take the steriods and... [ more ]
RLC I had my takedown 4/30/2012 and had some serious complications...picc line, going and and off meds, going 10 or more times a day, pouchitis, cuffitis,bone pain, muscle pain, axx pain, when into menopause (soon turning 50 in a few days) after 2nd surgery, skin cancer (squamous cell). It certainly has been a long road to recovery. I was not able to go back to work as of yet! It is now 9/2013 and I am finally seeing some changes for the better. I ended up going to an acupuncturists and did that... [ more ]
jeane Hotaru, Only you know how much you can stand. I have had my jpouch going on 2.5 years and have struggled with many of the issues you are dealing with chronically and from my experience,it does not get better. I have some level of pain every day and am very worn down by it. Some people will tell you it can take up to a year to adjust and I just kept waiting for things to improve. In my case they have declined. My quality of life is nothing compared to what it used to be and I am hoping to... [ more ]
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J-Pouch ForumsGeneral Discussion
Bathing after surgery
toobusy2cleantoobusy2clean
Lesandiego My mother and I cut holes (head and arms) in a garbage bag and it felt soooo good to wash my hair and the feel of the hot water. I am also lucky that I have a shower stall with built-in seats and an extendable shower head. After my wounds started to heal a lot more (no more raging infection), I would just wrap saran wrap around my abdomen. When my wounds were completely healed, I always took a shower with my colostomy bag removed and washed my stoma and surrounding skin. [ more ]
skn69 Inless there is an open wound there is no reason not to wash in the tube or shower as long as she doesn't soak in the tub...Like Marianne said, just don't point the shower head at the suture line...use a mild soap and don't scrub. She will really enjoy the clean feeling... Sharon [ more ]
mgmt10 I would think she should be fine to take a shower. I know I took one immediately when I got home from the hospital after my surgery. I just made sure not to get my incisions directly in the water stream. Usually they tell you before you leave if it's ok or not. I don't know much about the barbie bum but that probably shouldn't get too wet yet. If in doubt, call them and ask. [ more ]
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J-Pouch ForumsGeneral Discussion
Updated: another interesting article on the microbiome
ElmerFuddElmerFudd
Scott F The microbiome is looking like a very promising area of research for IBD (and digestive diseases generally). I suspect they will struggle a bit as they move from shotgun approaches (e.g. FMT) at one extreme and tinkering at the edges (e.g. probiotics) at the other extreme, to more thoughtful attention to many of the thousands of bacterial species in a healthy gut. The cure isn't around the corner, I think. [ more ]
TinCan I was referring to the linked article announcing the Microbiome Drug Discovery in ulcerative colitis. Should have made the link more obvious. [ more ]
Scott F We don't really know yet whether fecal transplant could cure antibiotic-dependent pouchitis. This will be hard to study, partly because the donor material will be different every time, and the cause of antibiotic-dependent pouchitis is poorly understood. Nevertheless, it's not a crazy thing to try, particularly if the antibiotics are causing real harm. [ more ]
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J-Pouch ForumsGeneral Discussion
In need of some direction
S Subrew
mgmt10 I had a two step procedure done laparoscopically. Best decision I ever made in regards to treating my UC. All the meds failed so I really didn't have much of a choice left anyway. The only drug I didn't try was Humira. At that point I couldn't be bothered with the crappy drugs anymore. And my GI told me if Remicade didn't help (and it didn't) that Humira wouldn't likely work either. My only regret is not having the surgery a lot sooner. The surgeries are tough (and I did have some... [ more ]
Lesandiego I did not have the luxury of "choice". My colon burst on my 5th flare of supposedly Chronic Proctitis. I suspect I had UC all along. I had an osotomy for 8 months and then had the J-pouch built in 2-steps. [ more ]
rachelraven I had a 2 step surgery, 22 years ago. No regrets, though sometimes I wish I'd had the option of some of the medical therapy of today. My doctor did a run of 1 steps in the 90s, but refuses to do them anymore. He said there were just more people with issues after 1 steps, and he had one person do extremely poorly, and they died, related to post-op complications that brought on an ICU stay and developed into multisystem issues and then cardiac complications. He said it was awful, and too... [ more ]
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J-Pouch ForumsGeneral Discussion
Hair loss
S Salmak
Lesandiego My hair came out in chunks 4 months after my initial surgery. It started to grow back 3 months after falling out and it is now super thick and curly (totally different than before). So, since it fell out at the 4-month mark, I blame the loss on Lexapro (anti depressant). No more problems since I quit taking that medication. [ more ]
Pluot It's a side effect of general anesthesia, even healthy people without prior med use will experience temporary hair loss after undergoing general. It seems to be associated with the length of surgery, I had significant loss after Steps 1 and 2 but no issues after Step 3. A derm I visited after Step 1 told me that 6-12 months after the last use of general anesthesia your hair should return to normal as long as you have adequate levels of Vit D, B12, iron, and folate. [ more ]
Scott F There have been many posts here about hair loss following the surgery. Almost all seem to have been temporary. [ more ]
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J-Pouch ForumsGeneral Discussion
Travel Insurance - Obstruction
A AD28
Lesandiego Use the online translator "babblefish". I used to use this to translate English to Spanish when trying to communicate with my tenants who did not speak English. I would not use it in a Legal document, but it worked very well in trying to inform the tenant of important matters. Here is the site: http://babblefish.com/language...anguage-translators/ [ more ]
Lesandiego Correct me if I am wrong, but I thought October 1st is when most state exchanges post information and you can sign up for a policy, but it will not become effective until January. [ more ]
CTBarrister You will need to get someone to translate it for you. 95% of the clients I have in insurance coverage disputes never read the policy in issue. There will be a provision that will apply to pre-existing conditions, and there will likely be a provision that will say which forum's law applies. If Japanese law is applied you will need to know something about general principals of Japanese law in regards to interpreting insurance policies. Such as whether they are interpreted according to their... [ more ]
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J-Pouch ForumsGeneral Discussion
Pain on top of foot?
nysnys
Judy1 I have the same foot pain and it came on suddenly too. It is attributed to Osteoarthritis. I get the pain when it is inflamed, very tender when I walk but not painful to touch. [ more ]
n/a This may be a reach, but is your second toe longer than your big toe? Morton's toe - can cause problems that start out of no where (I speak from experience - I think my issues began with a simple stomping of the feet to get dirt off the shoe). Osteoarthritis is another definite explanation. You might want to see a podiatrist - they'll x-ray to rule out a stress fracture. If osteoarthritis or Morton's toe, a steroid injection (done well, by a very competent podiatrist) can solve your issues,... [ more ]
Spooky I guess it would depend on the severity of the fracture. Some are just hairline and you'd just have to keep off the foot/minimal weight-bearing, so you might be prescribed crutches for a few weeks, or perhaps an air boot. With my mom, since she walked around on the fracture for days and days, by the time the pain and swelling got bad enough that she went to urgent care, the x-ray showed that the fracture had actually displaced, so she was put in a walking cast. According to the physician, it... [ more ]
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J-Pouch ForumsGeneral Discussion
1 YEAR SINCE TAKEDOWN!
G gleam
Akk3769 Congrats! I am one month away from my 1 year mark too. It definitely takes a year for everything to adjust. I also have to go multiple times during the night but I am also a night time eater so I have to get that under control. Best of luck with everything! [ more ]
gleam Hi Manny, I have never leaked at night. I don't know if it helps but, I take 2 immodium right before bed. [ more ]
KeepFighting(Manny) Hi gleam, Just wondering... At the 1yr mark do you have any trouble with night time incontinence? If not when did it stop? (If you ever had it) [ more ]
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J-Pouch ForumsGeneral Discussion
Sitting on scar tissue
Q questioning
questioning My surgeon has now confirmed that I have a perianal fistula. It is the first time he has seen one with a j pouch. I am scheduled for a fistulotomy (lay open procedure) on Wednesday, the 11th. Could anyone share some details of your experience with this? How long for healing? What diet did you follow after the procedure? How did you manage the open incision with bathroom visits? I am worried about incontinence - has it affected your control at all? I work in live television and can't just run... [ more ]
Jan Dollar I would not assume this is a sign of a fistula. I think this can be normal drainage. It can take weeks to months for an abscess to heal, and it can drain from time to time. That actually is a good thing for it to drain as needed. Jab [ more ]
questioning There was blood in the drainage overnight. I am worried that is a sign of a fistula. I finished the antibiotics on Tuesday. What do you think? Is this normal for abscess drainage this far out (2 weeks) or fistula. I'm scheduled to see the surgeon on Thursday. [ more ]
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J-Pouch ForumsGeneral Discussion
Los Angeles Doctor recommendation
D DZAtl
suebear Dr. Beart is in practice with Dr. Ana Garza and Dr. Vuksakin. I saw Dr. Garza for a scope last month; hadn't had one in 5 years. I really liked her and would recommend her. I'd recommend Dr. Vuksakin too. You can also see Dr. Beart; he's still practicing, just not doing surgery. Sue [ more ]
DZAtl Thanks a ton, I saw a dr at Cedars Sinai and i'd like to try someone else. He listened well but I'm not sure how closely he will be monitoring me. I'll try to get an appointment with Dr. Hwang, and also see if Dr. Beart has any recommendations. It's easier to get to Glendale than West Hollywood from where I work and live. Thanks, all! Daniel [ more ]
speech path I'm seeing Dr. Caroline Hwang at USC. She was recommended to me by my NY city doctor when I moved to CA. I really like her a lot. She's caring and very thorough. [ more ]
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J-Pouch ForumsGeneral Discussion
pepcid question
B beckysmom
beckysmom Thanks Scott. The pepcid is helping with the intestinal post surgery pain, it just has the other nasty side effect. She will have to try another, Dr says try zantac. [ more ]
Scott F If she's having a bad reaction to an OTC medication she should stop using it (IMO) and find a substitute that works better for her. It doesn't matter if she's the only person on the planet to have that reaction. [ more ]
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J-Pouch ForumsGeneral Discussion
fissure/s
P pookie
pookie Thank you so much, Jan! Two yrs ago when GI diagnosed the fissure/s on scope, I was told it was something I would have to accept. So I did (in order to cope). My husband died the same time; it has taken two yrs for me to start "thinking" again. We were both sick trying to care for each other. I was healthy up until UC at age 61. No, I have not tried any of those medicines u suggested. But I will. I am so thankful I posted this today. [ more ]
Jan Dollar Have you had any specific treatment for the fissures, like nitroglycerine cream, nifedipine cream or similar treatments? There is also Botox injections or even a sphincterotomy. If your GI has determined the fissures are not going to heal, he should give you a referral for other treatment. You should not accept this sort of pain as a lifestyle! You are doing what you can on your own, and it is not enough. The only other self help suggestion I have is sitz baths for the fissures and an... [ more ]
Scott F There are many, many different antidepressants around. They aren't likely to all have the same side effects. [ more ]
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J-Pouch ForumsGeneral Discussion
Is this normal ? 15 months since takedown & going to see the consultant
T TimM
Scott F As a general rule, if you don't know what's planned for your follow-up, then nothing is planned for your follow-up. [ more ]
TimM Thanks for reading i didnt think it was normal after doing a bit of reading here.. I have been taking 6 loperamide a day and for the most part they help to maintain a more solid BM , proved by stopping taking them and it turns to water ! I thought it was a bit weird to be left blowing in the wind for 14 months , i thought i would have had a follow up waaaaaay before now ... Cheers Tim [ more ]
Jan Dollar If you were reporting these issues in the first few months post op, I'd say give it some time. But, being more than a year out, you definitely need to address your symptoms. I am not sure how the NHS works, but in the U.S. the surgeon will follow up at least once after your discharge for a routine post op check, then again about six months later to be sure you are progressing well. At that point you discuss maintenance follow up with either the surgeon or he could release you to the... [ more ]
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J-Pouch ForumsGeneral Discussion
Obstructional pain
D dibelljw
CeeeeCeeee Thanks, Jeff! <g> [ more ]
JeffDC CC, it depends on whether or not a train was coming! [ more ]
JeffDC Try walking. I was in the hospital a few weeks ago with what turned out to a partial obstruction. From Wednesday evening to mid-day on Thursday, I had minimal output and did not get out of the bed much. Then I quit feeling sorry for myself and went for a few laps around the unit. About 10 minutes, later, the floodgates opened. I credit the walk I took for jiggling my abdomen. At the hospital, I got a CT scan and several xrays at the ER, followed by xrays two AND three days later. Some good... [ more ]
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J-Pouch ForumsGeneral Discussion
Electrolytes
Luton MattLuton Matt
Jan Dollar That's a pretty small dose of magnesium, I think. Maybe it is the combination. I think it is best to get your electrolytes in solution, not concentrated. But, I don't have issues with dehydration. Jan [ more ]
Luton Matt Thanks Jan, hope you are well! It was from a sports supplements website, containing 6mg of magnesium per pill. [ more ]
Jan Dollar Depending on how much is in there, magnesium salts are considered a laxative. So, yes, that makes sense. Is this prescribed, or an over-the-counter preparation? Jan [ more ]
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J-Pouch ForumsGeneral Discussion
increasing spasms and some blood. worried
I Ikh
Jan Dollar Typically bloody stools with increased frequency are due to cuffitis, an inflammation of the retained rectal cuff. It could be hemorrhoids too, especially if you've been bothered by them before. Another possiblity is anal fissure. Anal pain during a bowel movement could be due to any of the above, but with a fissure it is exteme. Have you informed your surgeon of the bleeding? If not, you should. This oes not mean you ave Crohn's. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
mini powdered doughnuts broke my month long "going good"
lovedby2lovedby2
skn69 My general rule of thumb is, 'if I really like it, then it really does not like my pouch!'...fudge, ice cream, gooey cheeses, peaches, pineapple, mango...and of course doughnuts and brownies...hmmmm maybe mother nature is trying to tell me something. Sharon [ more ]
Debra What is it about those tasty donuts . . . but they wreak havoc with my pouch too! [ more ]
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J-Pouch ForumsGeneral Discussion
J-pouches and testosterone
B Blairisking
phonix2g Surgeries usually result in a lot of blood loss so you could still be experiencing anemia. I had it bad for 3 months after my takedown. I hated the mornings. The feeling of lethargy and absolute weakness throughout my body was a terrible feeling. I would have to drag myself to the kitchen in the morning because I felt so tired and week. Have you had blood work done lately? They kept me on iron pills (ferrous sulfate) for months until I went back and my red blood count was in normal range. [ more ]
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J-Pouch ForumsGeneral Discussion
Partial ? Angry Rib Cage
vanessavyvanessavy
vanessavy Ugh this thing sucks. I might have to take pain pills since my breathing feels off due to the pain. Not a good time to watch steak paradise on travel channel! [ more ]
Jan Dollar Adhesion related issues make sense, as they can cause intermittent obstuctive symtoms, or just plain pulling/pinching type pain. I get the intermittent rib pain thing, but mine is inflammatory arthritis related. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Damned if you do and damned if ya don't
P phonix2g
phonix2g Yeah you are all right I'm sure it will pass with time I'm about 5 1/2 months post takedown so I'm still going through some of the psychological changes of it all. I have noticed I'm not as worried as I was in the beginning its starting to get a lot easier to accept certain feelings. This site also did help me a lot with preventative actions and diet tips. Its definitely a double edged sword though. I still think about the one post someone wrote labeled "borrowing trouble". Its soo true. [ more ]
skn69 I honestly do not do it conciously any more...as long as nothing is Wrong or there is no pain I just roll with it...it takes a while until you have seen it all (blue stool due to licorice, red from beets...the colours kind of freaked me out at first along with the one day water, one day mud and one day something different...)eventually you learn to control the output through the input and only freak with the unexpected changes like flu or other nasty viruses... Take heart, it takes a while. ... [ more ]
TE Marie I've worried about that before and think it has to do with what we eat. Some things have longer transit times than others. Some days we just go more than others. Going away for a few days changes mine as I tend to eat differently than at home. Eating a rapid transit food, like the romaine lettuce in my chicken roll-up yesterday speeds things up and some foods slows things down, like bagels. As long as we aren't feeling uncomfortable or obstructed it's all ok! If worried you are not going... [ more ]
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J-Pouch ForumsGeneral Discussion
1/3 of colorectal surgical patient discharges
C cassiecass
TE Marie The article is interesting and is about resections and not complete colon removal surgeries. I'm for anything that will help keep hospital stays down, especially if I ever need any more C/R surgeries. Thanks for the information. [ more ]
beckysmom Thank you for posting this. My daughter can not take the narcotic pain meds and tylenol just didn't cut it. [ more ]
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J-Pouch ForumsGeneral Discussion
kudos to all j pouchers that push forward!
K KeepFighting(Manny)
TE Marie Manny, I remember those early days and feel your pain. Here's my suggestions: No carbonated beverages, per my surgeon and he was sooo right I used metamucil and imodium per his schedule and he and I revised it the further out from take down I was. (I used generic metamucil capsules vs the mix in the water kind. We are to use less water than the instructions say so it will absorb more in our systems.) Fiber and Imodium 3 times a day with food. Imodium a 4th time at bed time. I took 3 capsules... [ more ]
KeepFighting(Manny) Liz, I am guilty of some of the things you mentioned skipping meals, chewing gum, consuming dairy and carbonated beverages and talking while eating/ sleeping with my mouth open... I think my biggest issue is the skipping of meals... Im going to make a serious attempt beginning today to eat on a regular schedule, walk more and get out of the house... I think me confining myself to my house is just giving me more time to notice these things and probably making me think its worse then what it... [ more ]
Pluot I think skipping meals hurts more than it helps, your bowel produces gas when it's empty and gas is hard to retain. I eat something that slows down my gut in the morning (like a bagel with cream cheese or oatmeal with banana) and then I'm usually gas and BM free until the afternoon. Are you eating things that make gas like eggs, dairy? Chewing with your mouth open, talking while eating, sleeping with your mouth open, drinking from a straw, chewing gum, drinking carbonated beverages? I don't... [ more ]
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J-Pouch ForumsGeneral Discussion
inflammation markers
BM boy's mom
Scott F I'm pretty sure there's no evidence to suggest that it's a good idea to use powerful medication to improve one of these lab tests, if symptoms are under control. You *might* choose among effective antibiotics based on these tests, all other things being equal, but even that would be guessing. The tests are more like a view through frosted glass than an actual report of what's going on. [ more ]
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J-Pouch ForumsGeneral Discussion
Travel after takedown surgery discharge?
P Peaches
ceew You do have a long drive. I rode home after my final surgery, trip was 2 1/2 hours. I only had to stop once for a bathroom break. No Imodium or Lomotil either. [ more ]
TE Marie I used pillows in the beginning but got an old school red rubber blow up donut from a small pharmacy and still like it the best. You can fill it with the amount of air you like best and it doesn't feel as flimsy as plastic ones nor does it slip and slide like they do. I think it cost somewhere between $10-15. It wasn't in a chain store, just a pharmacy included with a urgent care clinic. I still have it in the car. (I could use some more padding in my rear.) I also bought cushions for the... [ more ]
Peaches TE Marie - you mentioned your blow up donut cushion and that's a really good idea. Especially since he has less than 5 weeks until takedown and prolonged sitting is still uncomfortable ... even worse if said seat isn't padded enough! I looked up cushions like that and good grief - there are too many options. Do you think an air one is better than a foam one? They also have them in oval shapes vs. round. Do you think it matters? [ more ]
See all 12 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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