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J-Pouch ForumsGeneral Discussion
Help - Advice - Surgery Monday
temotytemoty
rachelraven I could not have lap surgery *because* of adhesions, when I had a cyst removed some years back. [ more ]
Scott F It's important to be realistic about surgery for adhesions. It's your best bet at getting relief, and I'd do it in your shoes, but it often causes new adhesions that replace the old ones. Hopefully if they recur they will be fewer or at least much less of a nuisance! [ more ]
temoty thank you both!! I welcome all opinions here! I feel good about it. Dr. Nagle has been nice to me the whole time and her team of surgeons have been very helpful. I feel good about the situation. [ more ]
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J-Pouch ForumsGeneral Discussion
is pepto an nsaid?
pouchingtonpouchington
Chuckus Apparently your Surgeon either doesn't know or doesn't care about the impact NSAID's could have on your pouch. Not everyone has a negative side effect from taking them, but, I'd suspect over time at some point all of us would have negative side effects from taking them. Just my $0.02 (As with anything, we are all affected differently by different things!) [ more ]
Jan Dollar Your dose seems fine, but just know that there is little information out there for long term use. The one and only real concern is possible bismuth poisoning. This is very rare and only documented in those taking high doses and at higher risk (elderly or very young). Still, if you develop any neurological symptoms, you should take a second look at your Pepto Bismol. The good news is that it is reversible by just stopping the treatment. Bottom line is to take the lowest dose and frequency... [ more ]
pouchington thanks again jan. my dose would be half a caplet 4 to 6 times a day. can the antibiotic effects wear off like prescription antibiotics can? [ more ]
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J-Pouch ForumsGeneral Discussion
Pouchitis but not helping? Help!
Stephaniesays91Stephaniesays91
Stephaniesays91 I'm pretty sure they never I've never heard them mention c diff! They just took biopsies as far as I know! I'm quite lucky in the fact I have no pain and I don't really have any other problems but it's really annoying that I have all the leaks and I'm not even aware of it happening! [ more ]
TE Marie Before they started you on Cipro did they test you for c.diff. This would have required a stool test too. My GI took a sample while doing my pouch scope. I'm asking this as Cipro gave me c.diff before so I can never take it again. It is difficult to test for c.diff once you are on antibiotics. I don't know if there is another test for it while on antibiotics or not. I had c.diff while having cuffitis and IPS. (The symptoms are all similar as well as they are with pouchitis.) Flagyl treats... [ more ]
Scott F It's best not to change more than one thing at a time. How can you know if it's the Imodium or the Cipro? [ more ]
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J-Pouch ForumsGeneral Discussion
having a J-Pouch to replace Ileostomy
F Francine
Pluot You should have an anal manometry test first and foremost to test the strength of the sphincters -- after nine years there is a strong possibility that adequate sphincter strength is not there anymore and a j-pouch would be a poor experience for you. I would not proceed without one... in fact, in your shoes I wouldn't even consider whether I want the pouch or not until getting a positive result on the test. [ more ]
Scott F A J-pouch isn't a foolish choice, but it also isn't "free." Most people with J-pouches are happy with them, but they can be more challenging to manage than an ostomy, and the road back from the surgery can be difficult. The advantages of a J-pouch are aesthetic (nothing poop-related to see), psychological (normal body image), and functional (no bag to deal with during various activities, or preventing some of those activities). Some folks find an ostomy to be a barrier to sexual intimacy,... [ more ]
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J-Pouch ForumsGeneral Discussion
Letter about proctocolectomy
ManchesterManchester
Jan Dollar I would imagine that the stoma nurse appointment is so you can discuss all your concerns, what the actual risk ratio is, and what treatments are available if you do have problems. I don't believe it would be to just give bad news. Often, knowing what is possible, probable, and certain helps greatly in reducing anxiety. It is too easy to lump the rare complications in with the common ones, and that can just make you lose sleep needlessly. Jan [ more ]
wooly-bobs Which hospital is Mr Carlson's clinic held? I had my reversal done last week at MRI under Mr Kushwaha and Prof Hill. [ more ]
Manchester Thanks everyone. Jan, we are trying to keep positive but I am still stressing about a few things. I have been referred to the stoma nurse to discuss sexual dysfunction but the appointment is in 3 months. I just don't know what this means. Is it a possibility of that is it and no action? Viagra? Thanks [ more ]
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J-Pouch ForumsGeneral Discussion
sacrum and leg pain...?
lovedby2lovedby2
rachelraven I think you need an MRI to rule in/out arthritis. A CT isn't sensitive enough. [ more ]
n/a I had horrible lower back/butt-cheek/leg pain as well - for years, mostly prior to the colectomy. I had to use a crutch to get around - when I could get out of bed, that is. I understand your pain, it absolutely brought tears to my eyes. I saw a rheumatologist, the first one told me it was ankylosing spondylitis; the second wondered why the first told me that, as he saw it as sacroiliitis. Whatever it was, I took waaaay too much ibuprofen and I believe it did a number on my intestines/pouch,... [ more ]
lovedby2 My Dr has always stayed away from those for just that reason...the side effects! He said the same, your fighting for your life just to end up with a another life threatening aliment. [ more ]
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J-Pouch ForumsGeneral Discussion
Shea Medical-Digestive Solutions in AZ very helpful info for us
C clouseau
Jan Dollar OK, I guess this is going nowhere. Sorry clouseau, if you have not gotten the answers you needed, but I need to close this thread. Let us know how things go if you choose to treat at Shea Medical. Jan [ more ]
Scott F Unfortunately their minions appear to have found us. It will be very hard to have a rational discussion on this topic without the Stepford Wives piping up. There are no huge secrets in medicine. If a treatment is marketed to appeal to the desperate, and priced like a miracle cure, then it's a sham until proven otherwise. This is an old business. [ more ]
Sandy1234 You are the one guiding it off topic in the first place! [ more ]
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J-Pouch ForumsGeneral Discussion
Pending Ostomy Reversal
Kathy AKathy A
Kathy A Hello Army Wife: Thank you for your response. I hope I have a story like yours to tell in future. You are exactly where I hope to be in a few months. I had the dye (leak) test yesterday and everything looked good, according to the Radiologist. I was concerned at first because they took so many pictures but she said it was because she wanted to make sure that she didn't miss anything regardless of how small. I was glad that she was so thorough. They inserted over half liter of fluid... [ more ]
Army wife Hello Kathy, I had my take down surgery August 2013. I was nervous because I had become fond of my ostomy because it allowed the freedom that is hard to enjoy with UC. The recovery isn't a breeze but much easier thn the first surgery. You will quickly learn your pouch and what you can handle. It will take some time. I am down to about 5 trips to the toilet a day with excellent control. I even sleep thru the night. I try not to eat past 7 pm. You will figure put what is best for you. I rarely... [ more ]
Kathy A Thank you both for your info and suggestions. It is very helpful. I am looking forward to getting this done and I am prepared for discomfort and inconveniences in the beginning. I just hope that I am one of the lucky ones and it doesn't take to long to get to a happier place. I have been exercising ye ole sphincter right straight along. Hopefully my efforts will not be in vain. As for the butt burn, although I am not looking forward to it, I figure it can be managed and treated easier than... [ more ]
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J-Pouch ForumsGeneral Discussion
Doing abs and stomas
skn69skn69
Jan Dollar Yes, mesh is stronger than tissue, but that can mean that what the mesh is attached to is under increased strain. So, best not to add to that strain. Remember that now that you are working, you are out running around more, so you are getting extra exercise that way. Stretches should be OK, as long as they are slow and do not cause pain. You should never stretch beyond the pain. Jan [ more ]
skn69 I'm trying...most of my workout consists of stair climbing (real stairs, not stairmaster or other machines)... have worked up to 1000steps or more a workout (around 40-50xs 20 stairs) plus arms and the swissball but on Sunday I got a pain in the lower abs...around the stoma...more just under the surface than deep inside. Reminicient of my hernia pain and that stopped me cold. Less so over the last 2 days...been taking it easy...but still there. Terrified that I have done something to myself... [ more ]
Jan Dollar You can do core exercises and cardio without doing exercises that strain the abs. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
How long does it usually take your dr. to respond?
lholdemlholdem
lholdem I put in another call yesterday and had my phone on me all day except for 15 minutes to do some laundry... and of course my dr. called me during that window. Ah well Murphy's law, eh? Apparently my dr. did have the flu the last couple days but he apologized that I didn't at least hear from his PA. He told me when he's available today so he can get paged when I call back. Since this is uncharacteristic for my dr., I assume it's a failure of the hospital system. Still frustrating though... [ more ]
GinLyn If your OB is concerned, have him/her call; might get results, info, and treatment faster that way. Gin [ more ]
ccanepa456 My doctor or nurse practitioner usually get back to me within a day or even that same day sometimes! It could also do with the fact that I am I'm pediatrics though, I sometimes believe! [ more ]
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J-Pouch ForumsGeneral Discussion
Is this normal?
BebeksporBebekspor
Bebekspor Most of my urgency is related to gas too, it's really hard to hold it. Everything gets worse as the day goes on. I do feel as though every week is a little better, but if still have these frustrations. My surgeon hasn't mentioned testing for pouchitis or cuffitis. I'm supposed to have my 6 month scope in July, but he wants to do it sooner if I don't improve soon. Some days are pretty good, some days aren't. I can't seem to tie it to anything I eat. Katie [ more ]
GinLyn I had all exactly the same symptoms for about 6 months after takedown. They slowly diminished, so don't lose hope; it really does just take some people longer. Having said this, it wouldn't hurt to be checked out for pouchitis (etc.) as others have suggested. About time for a post-op scope anyway, I would think. Gin [ more ]
Amstobar Hi, I'm also at three months post take down, and sometimes have the feelings you describe. I go 4-8 times a day, and sometimes a little more if I forget my Citrucel or eat something my body disagrees with. The more bulking foods I eat, the better I do, since the looser the stool, the more the urgency. If I take it too far though, I can get too firm and aggravate hemherroids I've developed. I still have some pain, but this is mostly related to hemherroids. I do have urgency sometimes, but... [ more ]
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J-Pouch ForumsGeneral Discussion
Amytriptilene?
AJ Auntie JoJo
Auntie JoJo I had been on prozac, effexor and welbutrin in the past and all of them gave me terrible diarrhea. This was before my pouch but I don't want to take that chance. [ more ]
Pouchomarx this never worked for me... [ more ]
TE Marie AuntieJoJo, How can you tell the other antidepressants tear up your pouch? I'm not on a Tricyclic one but am meeting with a Psych to analyze my medications next week. We will be discussing if I should change what I am on and if I should keep taking what I am or change to something else. I need the medication for depression and anxiety but I also have IPS. Thank you for bringing this up [ more ]
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J-Pouch ForumsGeneral Discussion
Vitmain D deficiency with IBD associated with increased cancer risk
Jan DollarJan Dollar
Former Member ❤️
Pluot Thanks Jan [ more ]
Jan Dollar Here is the link to the full text: http://www.cghjournal.org/arti...(13)01644-3/fulltext Basically, once your vitamin D level is within normal limits, the cancer risk is normal. There was no indication of any further benefit beyond that. I've read other articles that indicated benefits of maintaining levels closer to the middle or upper limits of the normal range, but they weren't cancer related. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Stoma wound packed not stabled? Pain!
S shnwilkins
shnwilkins Well I just found out that my surgeon reopened my vertical incision about an inch and a half because he thought it was infected. So now I have two open wounds, with the stoma wound being about twice as small as the other. But my jpouch seems to be functioning very well already so thats a plus. [ more ]
techwrench Mine was also cleanly sutured closed,and healed well.The pain in the stoma area, was similar to the muscle pain when you do too many sit ups,and it hurts the next day. [ more ]
rachelraven Mine was closed and healed just fine. [ more ]
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J-Pouch ForumsGeneral Discussion
loop ileostomy & VSL3
Paul HPaul H
TE Marie Your Imodium taken in the morning may not be working until the afternoon so if I were you I'd still take them in the morning. I still take Loperamide (Imodium) 4 times a day. Sorry if I wasn't clear in my prior post. 1) There is a possibility your Imodium could be floating through your stoma to your bag and 2) IMO the prescription form gets in my system or dissolves sooner. I've found there is a lag time in how it works and I need to have a steady schedule of how I take it. I'm glad you have... [ more ]
Paul H Thanks very much. I'll give the probiotics a miss until after takedown, I thought as much. The Lopermide seems to help later in the day, first thing in the morning it must be floating out. Not tried marshmallows but Jelly Out of interest my surgeon in Barcelona is an American lady with tons of experience with Pouches, she makes me feel very positive unlike the uncommunicative Spanish ones. Paul [ more ]
TE Marie Welcome to the site! I had dehydration and overflowing bags with my loop ileo too. I feel for you. If I were you I'd cut out alcohol as it is very dehydrating. Also I don't think I've heard of anyone taking probiotics while having an ostomy. Some that take them after getting their j-pouches say that probiotics give them gas or runny BMs (I forget which or both sorry.) My doctor said to take a maximum of 8 Imodium per day. I don't think taking anymore helps. Have you tried marshmallows? I... [ more ]
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J-Pouch ForumsGeneral Discussion
Blood In Stool
S SimpleX
Little Ski I had some of the same problems you have when i had a polyp in my pouch that started to bleed my doc went in and snipped it during a scope and clipped it then carterized it end off story . I also get occasional blood in the toilet when i get pouchitis which turns out happens when i take NSAIDS like ibuprofen or naproxen . [ more ]
SimpleX Thank you Jan. The Doc ordered a round of Cipro on the phone after hearing the symptoms and told me to check in my mid-week, sooner if problems arise. [ more ]
Jan Dollar No, I don't think it is Crohn's. There's a saying that states, "if you hear hoofbeats, you should think horses, not zebras." This means that cuffitis and pouchitis are by far the most likely cause of bleeding with a j-pouch (horses) not Crohn's (zebras). Ulcers are fairly common with pouchitis. I also wanted to point out that not everybody with pouchitis has the same symptoms, or even have symptoms. You can have mild pouchitis with severe symptoms or severe pouchitis with no symptoms. So,... [ more ]
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J-Pouch ForumsGeneral Discussion
scope today for takedown
U UjohnjC
UjohnjC thanks pouch makes me feel bit better i believe i am ready for takedown [ more ]
Pouch4Wf The stricture is probAbly not a big deal. Most people stricture with a diverting ileostomy. When they go in to do the takedown they will dilate the stricture and you should be good. The defect is also probably normal. The standard staple line can cause indentions that can appear to be little defects. Doesn't sound like anything more serious. Totally just my non-medically trained opinion. Dan [ more ]
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J-Pouch ForumsGeneral Discussion
minimize chances of c-diff
pouchingtonpouchington
Rebe0505 vannasamy interesting i know you are on pale diet as i am on scd..do you find consistency in 14 days antibiotic and one month off..or is this new regiment..and have you been 100 per cent following pale? i ask because i was off antibiotics 4 months..three being really pretty good..since than some ups and downs and wondering if it just might be necessary to take antibiotic on and off as required by how i am doing..i am off antibiotics day two after 7 days on because i was away on important... [ more ]
TE Marie I take it twice a day and the strength is 5 billion. The instructions said to take 1-2 per day or as directed by health professional so I take 2. I didn't run this by any of my doctors, just started taking it. I probably should have asked but my GI and surgeon at that time weren't pro probiotics etc. I have my Internist prescribing my VSL#3DS and the s.boulardii is OTC. My Internist advocates taking probiotics, like Align, after antibiotics to her IBD patients. [ more ]
Rebe0505 marie how many of the ssboulardi do you take..one or two times a day.. [ more ]
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J-Pouch ForumsGeneral Discussion
scope
U UjohnjC
techwrench I didn't know they scoped before the take down.I just assumed everyone had the contrast x ray,like I did. Interesting.To calm your nerves,just tell yourself,you made it through the big surgery,the tough part,the take down will be much easier.I thought it was a walk in the park,compared to the first operation. Best wishes. [ more ]
CeeeeCeeee Good luck on the scope and think positive thoughts! Most of us fly right through the scope and onto takedown! [ more ]
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J-Pouch ForumsGeneral Discussion
old timer with new problem
S sarahkay
sarahkay Thanks a million Jan. Amazing that the relevant thread was just yesterday (I'd scanned the forums but missed that one). Yeah, I am thinking it is my age (55) and my older pouch both being factors. Now I have to work out ways to get this pouch happy. And thanks to all the others that make this such a top notch site. I'd be so lost without all of you. Sarah [ more ]
Jan Dollar You might find some insight in this thread: http://j-pouch.org/eve/forums/...1071921/m/3087013076 Jan [ more ]
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J-Pouch ForumsGeneral Discussion
liquid stool, nasea and vomiting.
O Onwisconsin
Ikh How are you now Onwinsconsin? [ more ]
clz81 i was leaning toward obstruction too, but with the diarrhea frequency you just listed at every half hour, that sounds more like a virus or food poisoning. the only time i ever had frequency like that was when i had a stomach bug. [ more ]
Onwisconsin Update: there was no pain, liquid stool was coming out very fast, like one every half hour, then it.slowed down. I've been dizzy most of the day, experienced some cramping in the arms and legs. I was really worried I would have to go in to the hospital for an IV, costs me 250 copay to visit the ER, no urgent care open on weekends which is also a 150 dollar copay, money I just don't have. I drank a gallon of Gatorade and a half gallon of water today to stay hydrated. I had bisque soups just... [ more ]
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J-Pouch ForumsGeneral Discussion
Taking acid reducers
R raven68red
CeeeeCeeee I just started taking the "O" medication for reflux. Last month I thought I was having a heart attack.....elephant sitting on my chest symptom. My cardiologist checked me and said it is reflux. Actually, I thought reflux involved bringing up digestive fluid, etc. after eating. Not my symptoms. Just terrible pressure in the middle of my chest. Well, since taking the "O" med, I still have the reflux symptom described above but not to the extent I did a few weeks ago. I still need to take Tums,... [ more ]
cassiecass Evening Have you seen a gastro md? Best person to ask.,Have you ever been endoscoped? Have they checked your vit b12 levels. I have reflux issues when my Thyroid levels go haywire. Cassiecass [ more ]
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J-Pouch ForumsGeneral Discussion
Paleo Diet and Cholesterol
suebearsuebear
Jan Dollar Not too surprising Sue. I suppose this falls into the category of "no free lunch!" But seriously, if I had to choose between good function on antibiotics and good function on a statin (to treat the high cholesterol), I'd take the statin over the antibiotics. I guess you have to pick your poison... Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Loop vs End Ileostomy
P Pouch4Wf
Pluot Kathy got the main reason, it's higher up in the intestine and therefore your output is digested less and less liquid is absorbed from it. Therefore you have more output, it is more liquidy/corrosive to the skin, and it is much harder to stay hydrated and keep from losing weight. The distal end of the loop ileostomy sometimes puts out mucus, and this can cause leaks because people who are used to the end ileo often place their wafer OVER the distal opening, so the mucus comes out under the... [ more ]
Jan Dollar Loop ileostomies tend to lay flatter or in an uneven way and are more likely to recess, so getting a good seal can often be much more difficult. It is sort of a structural defect caused by. The intestine "tugging" from two directions. Jan [ more ]
Kathy A Hi Pouch4wf: I am not sure that I really know the answer to your question but I can offer some thoughts. I had an end ileostomy which, as you say, was rather non-problematic. Following surgery this past February to create my J-pouch in preparation for a reversal, I now have a loop ileostomy which is very problematic. My surgeon warned me that it could have a very high output (which it certainly does) because it is closer to the stomach and food waste has less travelling distance. As a result... [ more ]
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J-Pouch ForumsGeneral Discussion
Butt burn only when lying down?
C clouwho2
CeeeeCeeee When I get butt burn, severe or mild, I know it will be gone when the food which caused it finishes leaving my body. I never know which food/drink that is but just knowing the end of my "misery" is in sight is enough for me to withstand it. I do use a barrier cream during those episodes if I need to be out and about. otherwise, I just "grin" and bare it! (Kidding about the "grin" part!) Good luck to finding what works for you! [ more ]
Mema 1 I get the same thing too. It usually wakes me up. Does anyone know what it is and why it burns so much as it's coming down? [ more ]
lovedby2 I think I understand what you are saying. It's not butt burn on the outer skin it's the feeling of burning on the inside of anal canal. And as I Kay there it feels like the Stool goes into the canal and sits there burning and every time I try to use the restroom it doesn't all come out and it hurts!! I experience this often and can't bare it, just like last night. I'm in so much pain,hot baths etc...don't help. [ more ]
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J-Pouch ForumsGeneral Discussion
Employer saying my hair is "too extreme"
CatajaCataja
TE Marie I'm sure whatever color it is you are still beautiful. Sorry you had to do it. If they still don't like it I'm afraid they are out of luck as your hair can only take so much torture before falling out! Good thing I don't know their name as I'd be boycotting the establishment. Not that I go there but you know what I mean, I might know people who know people...... I'm glad this has not affected your income. [ more ]
Cataja I used a toner on it and now it is just a light red with butterscotch highlights...if the highlights were any darker, they'd be lowlights lol. I'm done...they can take it or leave it. There is no way it can be on my job performance...I am still in first place at the store and in the district, I lost my first place ranking in the region when I was hospitalized for 5 days. [ more ]
GinLyn Sooo. I was standing in line here (the Netherlands) at the grocery store behind a woman in her 60's and thinking to myself how the fashion has gone more purple this year when the irony hit me and I burst out laughing. Garnered a few looks... Let me explain: the fashion here for women over about 50/55 is to get their hair cut short or in a buzz-mohawk and dye it some random shade of red or orange. And I'm talking from highway worker orange to fushia to fire engine red and everything in... [ more ]
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J-Pouch ForumsGeneral Discussion
severe joint pain
L loralie78
Jan Dollar I have IBD related arthritis and was able to tolerate ibuprofen at high doses for years, but eventually the party was over. I had to stop it due to liver inflammation and pouchitis. Both ailments turned around, but now I only take NSAIDs for two week intervals when I am having a severe flare. For maintenance I take Azulfidine and Simponi for the inflammation. For the residual pain i take Norco and Robaxin (muscle relaxer). Hopefully, once your rectum is removed, your arthritis symptoms will... [ more ]
skn69 Depending on what your underlying condition is/was some people can take NSAIDs (anti-inflamatories) and others can't)...I take 1200mg/day and have been for quite a while but when I have adverse reactions (burning, heartburn, mild bleeding...) I take a course omopral to protect my digestive tract... Check with your doctor first before starting. Sharon [ more ]
loralie78 Okay, thanks so much for your response. I will continue on with the Tylenol. I do not have the pouch yet just the ileostomy for now. [ more ]
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J-Pouch ForumsGeneral Discussion
Thiamine (B1) and Riboflavin (B2) deficiencies
RJG-RossRJG-Ross
Jan Dollar Thiamine deficiency is common with malnutrition, so it makes sense that if you have chronic digestive problems, it will be a result. Trouble is, it is a real cause of neurologic damage, and peripheral neuropathy specifically. Supplementation turns it around quickly, but peripheral neuropathy can take months to repair. Hope you get things back on track soon. Jan [ more ]
mgmt10 I'm not sure if I am deficient in those but I am always iron deficient. I'll have to inquire about the other vitamins. My dr. is always so focused on my iron issues he never told me if I had other things going on too. [ more ]
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J-Pouch ForumsGeneral Discussion
Results of failed manometry test
S sally85
sally85 thanks mgmt10, i bought the machine and used it and only got 35 then i read that 100-150 is good and 200 is excellent lol rachel i hope i'll be laughing by the end of it im so worried because the first surgeon has already told me the muscles are so weak hes surprised that someone of my age has such a problem :/ [ more ]
rachelraven Had it done at 19. Never got a "number," but laughed through the test, as I watched each "squeeze" create peaks on the paper! lol. I had good sphincters, that's all I remember. Them telling me I was better than normal. [ more ]
mgmt10 I never even had this done. But I do remember reading someone had a number given to them because it was on the low end. [ more ]
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J-Pouch ForumsGeneral Discussion
Constipation. Which Fiber Supplement?
D DeathStalker
Spooky Agree; this sounds more like a stricture, especially if you are feeling tightness. However, it is possible, from time to time, that our stools might be more formed. If this is the case AND you have some level of stricture going on, then you might have some difficulty passing stool. You should get in touch with your GI or surgeon to have a stricture confirmed or ruled out. This is usually done through a digital exam. In the meantime, you will want softer, looser stools which will be easier to... [ more ]
DeathStalker Maybe it is a stricture. If so, then what though? Hope this isn't the case... [ more ]
suebear Are you sure this isn't a stricture at the outlet? We don't usually get constipated. Constipation is hard, dry stool. Sue [ more ]
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J-Pouch ForumsGeneral Discussion
hotdogs an issue for ileo?
PouchomarxPouchomarx
Pluot Never had a problem... I wouldn't eat more than one or two though, and always with a bun. I am a slow eater though and a champion chewer [ more ]
Pouchomarx DAMNIT...lol.. well i'm not going to dismantle my hotdog at the ballpark and start peeling the skin off... I will look like a psycho... [ more ]
rachelraven No obstruction with them here. They did come out pretty much undigested, though, teeth marks and all. [ more ]
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J-Pouch ForumsGeneral Discussion
Stricture at takedown site
P Pouch4Wf
Jan Dollar The stoma site is often too distant from the anus or mouth to be accessable via endoscopy, so it probably is not an option for you. But, worth asking about, for sure. Jan [ more ]
SteveRM Hello I think I am having this same problem except I am getting complete blockages. Can they diliate the stricture at the takedown site. I would much rather have that done than surgery again. [ more ]
Jan Dollar Narrowing at the stoma site is common, but stricture to the point of causing severe symptoms is not. Also, symptomatic adhesions are most common at the stoma site, but this is different than a stricture. A stricture is within the bowel wall itself, and adhesions are outside of it. They can result in the same obstructive symptoms though. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Loop illeostomy
T Thompson
Scott F Oral rehydration solutions always contain some sugar. Sugar turned out to be the key ingredient in keeping cholera victims alive. It's not Coca-Cola, and you might have to experiment with the recipe for your circumstances, but starting with a WHO solution is pretty reasonable, and it's easy to find a recipe. [ more ]
Jaypea I agree with everyone else. Sugar just pulls more water into the bowel contributing to very watery output. Drinks without sugar like G2 are great. There are lots of recipes on line for electrolyte replacement drinks that are sugar free. G2 can get a bit expensive. Now go get yourself a glass of something and drink, drink, drink. [ more ]
Thompson Thanks a lot for the reply. You guys are such help and will take the advice on board Thompson [ more ]
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J-Pouch ForumsGeneral Discussion
Emptying Pouch Question
MysticobraMysticobra
Mysticobra Ya....I guess control is the most important thing at this point. I do have that although I do leak sometimes and at times have to rush to the throne to go. One other important thing is you have enough reading material. After all we do spend more time than normal in there.....hahaha. Thanks for the replies. Richard. [ more ]
CeeeeCeeee First thing in the morning I find it takes more than "one session on the throne" to really empty my J-pouch. So, I just let things flow out of me naturally. Then, I get up and walk around a bit, making coffee, etc., and then sit back down on the toilet and the second and final session to take place. For me, this only happens in the a.m. The rest of the day is no problem for me. Depending upon what I eat and how much I eat, just one "go" at it works for me.....and not that often, either. I... [ more ]
Mysticobra Yes....I do that maybe 50% of the time. When I do not have to go back I feel great. Richard. [ more ]
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J-Pouch ForumsGeneral Discussion
Team Challenge 1/2 Marathon!
L LizTish22
Jilly I'm a Team Challenge alumnus as well! It is a wonderful organization and a cause that is so near and dear to our butt, I mean heart! The coaches and mentors will give you all the advice, support, and direction that you'll need. You gonna be an endurance athlete in no time! My one piece of advice: I think we need to drink way more than the average endurance runner/walker, and we need to drink electrolytes (all the sports ades) along with drinking water. Use Nunn or stuff like that! I stopped... [ more ]
betsaronie I did Team Challenge Vegas in 2011, just 5 months after my takedown. I wasn't really ready at that point physically and suffered some joint damage to my already messed up hips. But mentally, it was soooo what I needed. To be surrounded by people who just "get it." I loved all the people I met and CCFA is a wonderful and being transparent about how much of each donation goes directly to research funds. I kept wet wipes in a baggie in the zippered pocket of my running pants for all my bathroom... [ more ]
Pouch4Wf Team Challenge ROCKS!!! I'll be in Vegas at the end of the year for my 5th team challenge event. An absolutely awesome thing to be part of. Good luck with your training, you'll do fantastic! Dan [ more ]
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J-Pouch ForumsGeneral Discussion
Fatigue and discomfort
TrailerParkHeroTrailerParkHero
TE Marie Hopefully you will be over this soon! [ more ]
Scott F Giardia is pretty easy to treat and recover from. The diagnosis is often missed, so I'm glad yours was caught. [ more ]
TrailerParkHero Incredible. After multiple visits with different physicians and minimal testing, I got what I wanted. A stool sample. I think every other Dr. visit I went to previously, there were so many other scary possibilities mentioned. So when I would ask about parasites, it was kind of shrugged off. Nearly a month has passed and I received a call this afternoon I had test positive for giardia. Man, as weird as it sounds, that was what I was hoping for. The meds had to be ordered as they weren't in... [ more ]
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J-Pouch ForumsGeneral Discussion
Networking-Internship
S SimpleX
betsaronie What part of Ohio are you in? I have friends that work for Fidelity in Covington, KY so if you're near Cincinnati I could ask them if they know of anything. Are you looking for an internship still or an entry level job? Also, I've learned how to gloss over the gaps in my employment due to illness. They usually ask since I had 5 years with no job. "I had some health issues that needed to be addressed, but they are completely resolved now and are no longer an issue." I've been hired 3 times... [ more ]
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J-Pouch ForumsGeneral Discussion
Arthritis
sherlocksherlock
debbieod ❤️
KangaRoe Hi Sherlock, I had my colon removed over 20 years ago but had been diagnosed with Crohn's a few years ago. I have been having inflammation in my joints and low back pain for years. I recently have been having hip problems also so I went to an orthopedic specialist. I am having pain in my hip and sacrum so the doctor sent me to physical therapy and I now do specific exercises for it. Here is a link explaining it. Something like this might be going on with you too. It might be worth it to go... [ more ]
sherlock Thank you, At least I know I am not alone. I will see about the arthritis medications. [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
Nausea
H heyitsles
heyitsles Just a quick update, I had 2 scopes done on thursday. No inflammation found in the pouch or in my stomach etc. The doctor took some biopsies and is going to give a prescription for Zofran for nausea. So far he is stumped... [ more ]
heyitsles Thanks Scott, I probably haven't tried the pump inhibitors long enough but I will continue to use them until I see my doctor. I also did get some B12 patches last week. You put one on every 5 days, so I have used one so far. I also went for a blood test a couple days ago to check my iron and B12 so I look forward to the results. I have been googling a lot to try to figure out what is going on. Thanks for all help. [ more ]
Scott F If it is gastritis, that takes a while to clear up. Are you sure you used the acid inhibitor long enough? The fact that you've had something like this before could be an important clue, too. I hope you have no need for emergency surgery this time! [ more ]
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J-Pouch ForumsGeneral Discussion
crohn's now with the pouch
T TonyG
TonyG Thank you all! I'm looking into the Cleveland clinic, I'm worried that I'm missing out at another chance! :-) [ more ]
TonyG Thank you Goldie, I'm sorry you are going through so much. I feel the same with exhausting all my efforts before going to the bag permanently. I don't think I can even come to terms with that idea. Best of luck to you. Thanks again for sharing your experiences with remicade. [ more ]
goldie Tony...I've had my jpouch for 22 years and was diagnosed With Crohns in 2008...I was on humira which helped my Crohns but not the pouchitis...I then went on remicade which worked great...helped not only the Crohns but my pouchitis...unfortunately I had an allergic reaction and now on cimzia...had a scope yesterday and I now have Crohns in the pouch as well as the stricture at the anastomoses...I'm at a crossroads...I will be trying methotrexate with the cimzia and then maybe tysabri ...then... [ more ]
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J-Pouch ForumsGeneral Discussion
Warning: Important possible side effect - Jpouch surgery
S Solomin
Jan Dollar Those white anti-emboli stockings used to be common in the U.S., but seem to be largely replaced by the pneumatic leg wraps, which actively use alternating pressure to keep the blood moving. The stockings are static and can cause problems if they slip (and they often do), acting like a tourniquet. Jan [ more ]
skn69 So sorry for the bad post op surprise...haven't you been through enough already???? Enough! Go home, be healthy and happy forever more! Here in France they make you wear 'contention stockings' on you...have to put these awful, white stockings on (takes 2 people to get them on your legs, they are that tight)...but they seriously cut down on blood clots and other post op leg issues...not sure at all if compartment syndrome can be helped or prevented by these but they are official protocol here... [ more ]
Jan Dollar Pneumatic leg wraps can help, but compartment syndrome is not completely preventable. Many factors contribute, and swift diagnosis and treatment are the main focus. Complications do not necessarily point to negligence. Sometimes stuff just happens. Hope there are no lasting effects for you. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
HELP!!
Mema 1Mema 1
Jan Dollar You're welcome. I'm sure you'd be just fine. Lots of very helpful and knowledgeable people here. Jan [ more ]
Mema 1 Thank you so much, Jan. You're so unbelievably knowledgeable in all areas. Thank you so much for all the posts and all the advice and most of all your concern with everyone (including me) on this site. Whatever would we do without you?? [ more ]
Jan Dollar There is much controversy/contradiction regarding small bowel involvement post colectomy for UC. Some consider it always to be Crohn's that was previously undiagnosed. If it is only in the pouch, Crohn's is less suspect. But, if the inflammation (including ulcers) are well beyond the pouch, Crohn's becomes more likely, barring other causes, such as NSAIDs, bacterial infection, celiac disease, etc. The sad truth is that they can't tell just by looking at it. Even biopsies and serologies are... [ more ]
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J-Pouch ForumsGeneral Discussion
cleveland 2nd round
ST shoot thru
mgmt10 I remember your posts from last summer. I hope she rebounds quickly this time. These surgeries are really tough but very much worth it in the end. Wishing her a very speedy recovery. Let us know how she's making out. [ more ]
shoot thru Thank you. She is a little better today.. [ more ]
liz11 hang in there jim and your wife. If you are at CC. ... its the best place she can be. My mum had lupus and I'm currently in the suspicion of lupus phase. I know it is a very difficult disease. So blessings to you and her and prayers that she can recover from this surgery quickly. [ more ]
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William J. Johnson
bjohnson@j-pouch.org

Bill Johnson founded the J-Pouch Group in 1997.

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

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