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J-Pouch ForumsHelp! Need advice now!
constipation?too much roughage? not enough water? help
R Rebe0505
nicole450 Hey Rebecca, I hope you're feeling better. Just wanted to mention that if you are still on SCD, that constipation is often a sign of your gut biome is changing. Many people swing from diarrhea to constipation and back to diarrhea early on in the diet (meaning first 6 months or so). This might be contributing to your problem? Maybe along with dehydration. Mirlax is legal and pretty gentle on the gut if you are still having issues. Good luck and feel better! [ more ]
Rebe0505 thanks jan..i am thinking you are right..some obstruction or blockage ..and i certainly could not put my finger on having eaten anything out of ordinary..the shaking i am describing was more my state of mind thing i guess..and i am also thinking there might have been eliminate of dehydration(like you who keeps track!) and i certainly have some history with dehydration too..like two weeks ago i passed out at home because i took a vicodin and was dehydrated.. i actually thought to do what you... [ more ]
Jan Dollar Sounds very much like what I experience with a partial obstruction. Well, except for the shaking and extreme urges. Yes, I get urgency and frequency, but not to that extreme. The episodes usually last 1-3 days. There is no common denominator food. Maybe I did not drink enough fluids. I know I tend towards dehydration. (After nearly two decades, who keeps track anymore?) Basically, I think it is just a temporary kink from the adhesions in there. I always seem to get a crampy feeling in the... [ more ]
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J-Pouch ForumsGeneral Discussion
Breast feeding poll
rachelravenrachelraven
skn69 Both hubby's family and my sister-in-law's family could not breast feed or formula feed their 'male' babies. (yes, only the boys...Very strange). Hubby had 10-15 wet nurses the first 3 months of his life (wet nurses are women other than his own mother who have had babies and offer to breast feed yours if for some reason you cannot). He would tollerate the milk for a day or 2 then get sick and they had to change wet nurses. They gave up at 3 months and fed him bread dipped in sweet tea or... [ more ]
Jan Dollar Shouldn't be. Mother's milk is in no way the same as formula, nobody is allergic to their own mother's milk (but could be intolerant of something mom ate!). So, it is not a different delivery method, but a completely different milk. All infants must have milk. The GI tract is not ready for anything else. Jan [ more ]
skn69 Maybe it is the milk that is the problem and not the delivery method???? Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
GRAPHIC Dr. Remzi-Pouch Revision Presentation
TE MarieTE Marie
TE Marie Since there are currently several threads about pouch advancement surgeries I'm bumping this up. [ more ]
dtmack This video is astonishing. Even more, it hits everything i am facing at this moment. Knowing they feel pretty confident has given me a sense of hope. Thank you for posting this. Derek [ more ]
CeeeeCeeee Dr. Fleshner's name first came to me when the C/R surgeon I had chosen wanted to do my surgery in one step. I was 61 at the time and had been on prednisone for about three years. When I shared my surgeon's plans with my GI doc, he very strongly said, "Even Dr. Fleshner would not do your surgery in one step because of your age and history of extended prednisone use." Well, I repeated this word for word to my surgeon and although he didn't agree, he did do my surgery in 2 steps. I felt so good... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Migraines/Jpouch
R RLC
TE Marie I keep coming back here too. Most recently I went to the ER thinking I had a heart attack has brought me all around back to visiting hydration, migraines, chiropractors, neurologists and the whole merry-go-round. I've been going to a wonderful atlas chiropractor for years that "cured" my former headaches and I still go to her to keep everything in alignment monthly. I went through menopause before my j-pouch surgeries and had no migraines. I've been on extra magnesium for fibromyalgia long... [ more ]
AllyKat I started seeing a chiroprator in Jan of this year after reading an article about how after three months adjustments can help your migraines as well as meds? My dr also gives me laser treatments in my neck. So far in 5 months. Only had to take my migraine med twice. I still get headaches but with a little tynelol I'm good to go. The FDA just approve Celfy, a devise u wear on your head with magnets to Recent migraines. [ more ]
Lambiepie Aaaand I realize I've posted about this before. I actually STARTED A THREAD about this. I guess the chronic physical and emotional pain during years of this journey have done a number to my memory! [ more ]
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J-Pouch ForumsGeneral Discussion
Surgery to drain abscess
B bratcat
scorp99 I'm also dealing with couple of fistulas (or at least one that leads to 2 separate tracts). I have a seton going through both, the problem is that in one case, its not helping much. That area hardly drains and still swells up. The only thing that seems to relieve the swelling is antibiotics (ie. Flagyl). I wish there was something topical I could apply there that would help. [ more ]
rachelraven Then you must have at least 2 perianal abscesses/fistulas if 2 are by your anus. Those would be similar to my 1, and a seton would work there. I've heard that it is a bad bad idea to do surgery on Crohn's fistulas. That sometimes, setons are left in for years... However, meds like Humira and Remicade can actually close some Crohn's fistulas, so that's worth asking about, if you're not already on a biologic. I try to think of my seton as my "exotic piercing," lol. It sucks, but I do try also... [ more ]
bratcat Rachelraven, I'm not sure where the need is. I have three abscess that are external that swell on and off. But my GI said I had many small ones (and the one big one) in the pelvic area. I don't know if the one he wants drained is external, or internal, or where it is. I have one that I think is on the bartholin? gland and two on either side between my butt cheeks near my anus. [ more ]
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J-Pouch ForumsGeneral Discussion
1st step done couple of questions
allswellallswell
allswell the anal feelings woke me up a few times last night but I wiggled around and quite a bit of mucus came out. less than the other day though. At least it doesn't hurt when I cough any more. Going to take more short walks during the day.I am still winded, especially in the morning. I think the fact that i didn't do alot of cardio exercise before the operation is taking its tole. [ more ]
Shainy As for my output it varies, in the morning it is more liquidy but it firms up during the day. I am not taking Imodium, and now I am eating more fibre it is not as thick as when I was mainly having carbs but I prefer to eat healthy and have a bit more output. After the first surgery I was jogging two weeks after, but this time I am taking it easy a lot more. I want to make sure the pouch fully heals before I go back to working out. I may start jogging next week if I feel less discomfort. I... [ more ]
Shainy Alliswell, the feeling is low down for me as well. I think it's where the pouch is stapled to the sphincter muscles. It feels like I am straining even though I'm not. I find if I sit on the toilet, move back and forwards a bit, then the mucus comes out, I do my best not to push too hard. Sometimes it seems like even a bit of stool is coming out but that is normal too. Diet wise I stuck to carbs for the first two weeks, but now I am eating salads and being more adventurous. [ more ]
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J-Pouch ForumsGeneral Discussion
Around what times do you empty your pouch?
BebeksporBebekspor
Jpouch8888 Interesting question. An "Average" day (Work Day) is the following 1) 6:30am (Immediately after waking up) 2) 6:50am (Right before shower - to ensure I am empty for the day) 3) 2:00pm 4) 6:30pm 5) 8:30pm (sometimes) 6) 10:30pm (always make sure I have an urge to empty before falling asleep) 7) Middle of night (50% of the time) [ more ]
Rocket Ugh, I go at least 10 times a day within a 24 hour period. That includes once or twice during the night. I wake up at about 7 and I go. I have breakfast and I go again. Before lunch I go a 3rd time. Sometime after lunch I go again and before I leave work I go again. So that is 5 times. Then when I get home I have to go again. Have dinner and I go again. That is 7 times. Typically, I go again about 2 more times before I go to bed. That is 9 times. Then once or twice during the night. So that... [ more ]
Bebekspor I dislike the feeling of having to go. For a long time, it felt like I was actually having a bowel movement. Well, it still does, only not as strong. Not pleasant when you are sitting at the dinner table feeling like you are pooping! Lol. If I went every time I felt that, I'd be in the bathroom 25 times a day. It's not a constant feeling for me, it starts, lasts about 10 seconds then subsides. It comes back at intervals, like contractions. I can usually hold it from 30-40 minutes once I get... [ more ]
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J-Pouch ForumsHelp! Need advice now!
chronic pouchitis
E ElizaB
Scott F Augmentin is a combination of two antibiotics: amoxicillin and clavulanate. "Basic" Augmentin tablets are available in three different strength combinations: 1) 250 mg amox/125 mg clav 2) 500 mg amox/125 mg clav 3) 875 mg amox/125 mg clav There are a couple of liquid formulations, too, as well as extra strength and extended release tablets. My GI put me on the basic tablets with 500 mg amoxicillin. I started at twice daily, got decent results after a few days, and after 10 days have backed... [ more ]
clz81 Yes, I used to cycle Cipro, Augmentin, and Pepto at one point, but had been on Cipro first for awhile, then Augmentin solely while pregnant, then the Pepto for a year with no antibiotics. If I had been able to cycle them the duration of the 3 years, perhaps they would have lasted longer. As for Augmentin, I think it's technically a 1000mg tablet (750mg of Amoxicillin and 250mg clavulanate). I took that twice a day except when I was pregnant and only took half a pill once a day. Both dosages... [ more ]
ElizaB Thanks everyone. Not sure how to respond on this forum but if I ask to switch to Augementum, what would be the proper dosage and frequency? I really wish I could find a local GI(hartford area)who is up to speed on these pouch issues. Any suggestions? ( Thank you, Jeanne,for your recommendation. I'll keep it in mind.) [ more ]
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J-Pouch ForumsGeneral Discussion
Dx stricture??
SavannahSavannah
Savannah Grace, You must be mistaken. I am from Minneapolis and I am going down for a consult at Mayo in Rochester. [ more ]
GraceB Hi Savanna I go to Mt Sinai. Could you tell me the name of the doctor you are talking about from Cornel. I have heard good things about Cornel. I hope you get good news about the stricture you have. I will be looking for your posts. [ more ]
Jan Dollar Savannah, interesting to hear the additional information that this was felt to be at the top of the pouch, NOT an anal stricture. Pouch inlet stricture is only second to the anal stricture, so this is mor common than you think. Absolutely, it is treatable by balloon dilation, but it may take more than one treatment. Fingers crossed that your GI series is useful. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
pure veggies?
R Rebe0505
rachelraven I make veggie soup like this sometimes (blended), but mostly 'cause I just like it that way. I had it like that everywhere in Ireland, and fell in love with it like that. I just pick the veggies that bother me least, and go from there. (I leave out the dill.) http://kosherfood.about.com/od...ipes/r/veg_blend.htm [ more ]
rachelraven It varies what raw things bother me. I love salads and can eat lettuce and spinach raw... I can eat a bit of raw carrot, but I'd never go crazy these days. I used to eat raw cabbage, but usually err on editing that out, unless it's just a little bit strewn amongst the salad. Things like that. Cucumbers do not bother me at all, nor does squash. My editing choices are more related to potential outlet obstructions, as over the past two years, I've had an off and on issue with narrowing there. I... [ more ]
Jan Dollar I am on the other end of the spectrum. I like my cooked veggies done "al dente" unless they are in a soup or stew. I also eat many raw vegetables and have a big salad every day. I have no problem absorbing nutrients (as my ongoing battle with my weight shows). I have no deficiencies other than vitamin D, but that is not an absorption issue. My pouch function is fine with this varied diet, but this is something that occurred gradually over the years. But back to your question. Yes, pureeing... [ more ]
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J-Pouch ForumsGeneral Discussion
Anyone ever heard of the "Maker's Diet"
R Rocket
Rocket Olive, OK thank you. I am in the process of having the ELISA/ACT Test done on June 16th. The doctor I am seeing is an MD but is also a Holistic Doctor and believes doing things naturally, but will prescribe Meds when necessary. I have to try another approach. I get Pouchitis at least 4 times a year and the medical doctors tell me diet has nothing to do with it. The frequency of getting Pouchitis is too often and it lasts too long each time I get it. I am tired and exhausted and it takes a... [ more ]
Olive Oil I had a LOT of success with the Paleo diet in the sense that it seriously cut back my diarrhea and thickened my stools up so I felt like a "normal" person. I would still be doing it except that I have chronic small bowel obstructions and I'm limited as to what I can eat or I'll get an obstruction. My GI doc is the one who coauthored the book with Rubin, "Restoring Your Digestive Health." I always believe in starting with diet before attempting the heavy drugs. If you can help yourself... [ more ]
Rocket OK thanks Jan Rocket [ more ]
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J-Pouch ForumsGeneral Discussion
so I just had mucosectomy done and can't pass gas yet. why?
dgtracydgtracy
dgtracy I think the potassium ended up being the trick. Things improved and I was sent home. Currently home and doing good minus all this soreness [ more ]
Blowe Definitely check with your doctor. If the mucosectomy led to a surgically related leak in that area, your anus may be stricturing . As a result, nothing can pass. This happened to me and the next step is more surgery. I hope I am completely off base here [ more ]
Jan Dollar Potassium is important for muscle function. Low serum levels can occur post op as fluids that shift into tissues during surgery return to the blood stream. They can't give you potassium in advance, or you can wind up with heart arrhythmias. Diarrhea also leads to potassium loss. Anyway, low potassium=reduced bowel activity (paralyzed smooth muscle). The trapped gas is the sign that things are not moving from mouth to anus. You can pass a lot of liquid stool, yet still not be functioning... [ more ]
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J-Pouch ForumsGeneral Discussion
fatigue
J jpouchmike
rachelraven Hubby has Hashimoto's with his psoriatic arthritis. Normal levels on thyroid labs, other than the Hashimoto's indicator. Has seen endocrinology, but they won't treat him yet. [ more ]
cassiecass Evening when were you diagnosis with thyroid disease? What was tsh? I am Hypo myself. Learn about thyroid disease www.thyroid.org www.aace.com Always know they can change the TSh fast but recovery from the occurance can take a long time.Learn your Tsh and how you feel.Trust me if it changes you will know. If you gain or lose weight you need to retest.Discuss with your Md at what weight changes you need to retest. Have you check your ferritin levels? Talk to your Md and discuss possible... [ more ]
Spooky I'm sure this has been done, but have you had your hemoglobin, iron and/or ferritin levels checked recently? You might be in the low normal range; for some people, low normal may result in symptoms. For instance, I'm very sensitive, in that when my hemoglobin drops below 110 (11), I tend to feel quite fatigued with a generalized "heavy" feeling. I'm okay as long as they stay above the 11 mark. I was feeling very poorly around Christmas, and that that time my hemoglobin was 104 (10.4). I'm... [ more ]
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J-Pouch ForumsGeneral Discussion
Problems
MysticobraMysticobra
Mysticobra Thank goodness!! I love apple sauce and eat it everyday. Again...Thank You Jan. You are very informative and helpful. I will keep you updated in the next few days if things subside. Richard. [ more ]
Jan Dollar Apples contain pectin, which thickens stool, similar to other forms of soluble fiber (like metamucil). It should not constipate though, because of the natural sugars and insoluble fiber. It is possible that along with too much lomotil, it could be adding to your troubles, but I doubt it, because it mostly adds bulk and does not slow the gut. The main thing is that it does not promote diarrhea. Jan [ more ]
Mysticobra Hello Jan. I appreciate all the information. I am not taking the lomital as of now and it has been a little more than 24 hours and the frequency of bm s has slowed already. As for the chocolate. ..I will take that advice too. If I do start having diarrhea problems I will take a lomital. As needed. Thank you very much for your advice. If I would have called the surgeon I am certain she would have kept me on the lomital. Richard. PS...I eat a lot of apple sauce....would that be a problem? Just... [ more ]
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J-Pouch ForumsK-Pouch Korner
hospital stay and time off work ?
PouchomarxPouchomarx
skn69 Can you do any work remotely? Maybe some work via computer? You cannot go back sooner and won't want to either...Trust me...6 weeks is about the earliest that you can imagine and even then at part-time only... Sharon ps...rushing it is not a good idea [ more ]
Pouchomarx i cant miss 2 months of work..what am i going to do? I'm a manager at a car dealership in parts dept. only 3 people in my department counting me and they are fairly new. not to mention the short term disability pays nothing and i only have 2 weeks of vacation time available through this year. And how does child support work? they take out of my monthly bonus check but if not working i get no bonus. I am covered 100% though till end of this year so at least the surgery will be free.. [ more ]
vanessavy This is major surgery. I mean MAJOR. It was the toughest thing I ever went through. You need at least 6-8 weeks off of work. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hemorrhoids
W wsh6745
skn69 I bought my hubby a doughnut to sit on in his car...I also suggested using an icepack for a few minutes at the end of the day...it helps but use crushed ice instead of cubes...less sharp edges. While in Fla on vacation he had a particularly bad flare and they told me to buy him aloe vera gel with a local anesthetic. It is used for sunburn but worked quite well on his burning backside. I keep a tube at hand in the bathroom at all times for him. It doesn't cure it but it's rather helpful. Sharon [ more ]
Scott F One useful thing to do is ensure that you minimize the need to strain on the toilet. You might want to experiment with things that affect stool consistency and gassiness. Some people with hemorrhoids benefit from soluble fiber, but that's probably more useful when the hemorrhoids are caused or worsened by constipation (which affects very few J-pouchers). [ more ]
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J-Pouch ForumsGeneral Discussion
New med on the market? Vedolizubam????
skn69skn69
skn69 Thanks for the news, I will pass it on to her. Sharon [ more ]
Karenchase I was in clinical trials with vedolizumab, I guess about 2 years ago now. I'm glad to see it's on the market now, I guess it means it worked for some significant number of people. I was one of those with very stubborn acute UC symptoms from the point of my diagnosis until the diseased organ had to come out. My GI at the time was very proactive with medical interventions, and got me into the trial as a last gasp effort to manage my disease medically. It didn't work for me, I think I was too... [ more ]
Jan Dollar Well, don't underestimate the placebo effect. All the more reason to believe your treatment will be effective. Studies did show that this new drug is more effective than placebo. Still, for IBD, there is no cure, just management, which I guess is good enough. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Any travel tips for Europe please??
N Nork
skn69 Congratulations Nork, What a wonderful adventure! I live in France and have traveled all over Europe including a bit in the Eastern block...Spain was my favoirite county for perfectly clean toilets with little water spigots to clean off your hinny if needed...all tiled and great paper, I can't remember having problems in Greece or Italy at all. Sophia was a totally different story, I ended up spending much too much time in an airport there with No real toilets but open stalls and military... [ more ]
Daisy18 I went to France and Spain post pouch and had absolutely no issues as far as finding bathrooms or anything I needed. Any restaurant or bar has a bathroom you can use. So do most of the places you will be going to sight-see. Like someone said, carry change just in case there is a charge, and try not to worry about it! (I know, easier said than done :-)) [ more ]
rachelraven I travelled to Ireland on my honeymoon, and had no issues, however I was on zero meds or supplements or vitamins or ANYTHING at that time. My pouch was a champion in the 1990's! Heck, I didn't even have a GI doc, or see my CRS between 1992-2010. [ more ]
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J-Pouch ForumsHelp! Need advice now!
In lots of pain - Help
G grandmaof1
lovedby2 You're welcome! I'm always looking for advice so when I can give some and offer my help to someone, that makes me happy. [ more ]
grandmaof1 Thanks so much for the information!!! I never thought of a bath or hot tea...... [ more ]
lovedby2 Almost 2 years out this October and had a few partial blockages. I ride them out as well, painful as it is, but I too have high deductibles and our of pockets. But to add to the regimen, try hot tea! With in I'd say a few hours I've had relief by drinking this, as hot as you can stand or even plain hot water. Soak in hot tub temperature baths on your left side, really helps to get the stool moving and not embarrassed to say but I've had such horrible pain from the blockage and was soaking,... [ more ]
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J-Pouch ForumsK-Pouch Korner
Gurgling
amosamos
vanessavy Cut out sugar and bread. I can't eat yogurt, just turns into a mess of gas and gurgles. Diet plays a huge role. [ more ]
skn69 Hi Amos, I don't know (or remember) if you have a k pouch or a BCIR....but here goes. Gurgles and noise is often caused by gas and liquids more so than other stuff...So, firstly...I wouldn't personally care (I am a teacher and honestly it has never been a problem...students fart & burp in class, other teachers have less than perfect etiquette and make noises and in social situations like dinners, coctails and weddings I figure the gurgles are so much better than total incontinence that... [ more ]
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J-Pouch ForumsGeneral Discussion
Finding it hard to gain weight need advice with the loop
T Thompson
Thompson Thank you very much for both your responses it has really reassured me that the weight will hopefully comeback. Thanks [ more ]
mgmt10 I ate like a 300 pound truck driver with my loop ileo and I lost weight! I was starving all the time. I could not keep weight on. But that quickly changed after takedown. Now a days I have to watch what I eat and work out regularly or I will gain all too easily. Don't worry, you will put the weight back on naturally but probably not until after your takedown surgery. [ more ]
Pluot I couldn't gain weight at all with the loop ileo -- in fact I lost about 15 lb. About three months after my reversal it was like a lightswitch went off, I think I gained almost 10 lb in a month. It's really hard to gain weight with the loop ileo, you just aren't absorbing a lot of the calories from the food you eat. It will almost certainly turn around after reversal (but not necessarily immediately after). [ more ]
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J-Pouch ForumsGeneral Discussion
Urinary Rention after J Pouch Surgery
S Shainy
wsh6745 I'm a 45 year old female and have been having the same problem. I had to be catheterized a couple of times after my first surgery. I don't require catheters now but I need to sit on the toilet and shift positions numerous times before completely emptying my bladder (it may take 10-15 min). I am 8 weeks post takedown and still having trouble. Many times I also get severe pain when urinating. My surgeon doesn't know what is causing this. I just had a pouch endoscopy under local anesthesia but... [ more ]
CeeeeCeeee ccanepa456.....I posted my response in another part of this website....advice....... Am wondering who your surgeon was since I, too, live in CA. Best wishes. [ more ]
Amstobar I am male and 42. I had similar problems. I even had an event where I sputtered to a top while peeing. (Like a straw hitting air at the end of the cup). That was disturbing! I'd say I was back to normal with peeing after a month or two. [ more ]
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J-Pouch ForumsGeneral Discussion
Rectal Cuffitis
P Pkitty
Former Member ❤️
techwrench I just tried to make an appointment with Mayo in Arizona,and they are booked out to late July early August.I have an appointment with my small town GI the end of June,and he was talking about doing the Remicaid then. I am frustrated with how long it takes anywhere to get an appointment.Don't know what to do now!Is Cleveland Clinic the same way ? [ more ]
techwrench Yikes ! I thought it was just a fancy term for inflammation.Thank you ! I have been too complacent,and caught up in the day to day life. Not liking the idea of Remicade.Time to go see a specialist. [ more ]
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J-Pouch ForumsGeneral Discussion
Bump near tailbone
J Jpoucher4life
Jan Dollar Not to my knowledge, just bum luck... They can be a real pain in the ass, so to speak, and have a tendency to recur. Jan [ more ]
Jpoucher4life Thanks Jan, I don't know for sure, you can't see the bump from the surface it's defenitly underneath the skin. Are piolidanal cysts related to Crohn's disease at all? [ more ]
Jan Dollar Look up pilonidal cyst. See if that matches your symptoms. http://en.wikipedia.org/wiki/Pilonidal_cyst Jan [ more ]
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J-Pouch ForumsGeneral Discussion
J Pouch and Sensitive Prostate?
E Elliott
Jan Dollar Your prostate should not have been moved. It could be irritated if you have significant disease. If there is swelling nearby or if your pouch presses on your prostate when it is full, that can be a sexual stimulant. That said, there are a great many nerves in the anal canal. Many associated with sexual stimulation. So, I would look at what is going on there for your answer. Perhaps irritation of nerves in the anal canal are also irritating /stimulating the prostate. I could be wrong, but... [ more ]
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J-Pouch ForumsGeneral Discussion
Fissure :(
ccanepa456ccanepa456
rachelraven A sore "bump" began my perianal abscess to fistula journey... Just as an aside. [ more ]
Pluot A fissure is NOT the end of the world and it definitely CAN heal. I had one form after my takedown and as far as I can tell it's completely gone now. The straining is probably what is causing your problems -- that, combined with the bleeding, makes me think your problem might be cuffitis, not pouchitis. Unfortunately your pouch is very new and I think you really need your surgeon's help to address these issues. Of course in the meantime make sure you are staying hydrated and eating lots of... [ more ]
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J-Pouch ForumsK-Pouch Korner
Booked surgery for k-pouch
A ashbre
skn69 Ashbre, Congratulations and welcome to a very select club... You are experiencing growing pains and that is normal. Try to keep your diet to a gas-free one that gives you full nutrition without those nasty gas bubbles. I stuck to chicken, fish, and lean meats plus pureed veggies but you might not want the mushed carrots for a while, they are hard to get rid of... Drink your prune or grape juice after meals to keep things loose and flowing and add some hot green tea to your diet for extra... [ more ]
BillV Ashbre, I am happy to learn that your surgery went well and that you are now “bagless”. You will appreciate your new pouch more as time passes by. You are only one month post-op, and it typically takes several months for your pouch to mature and for your internal plumbing to adjust. There are several over-the-counter anti-gas products (like Beano) and prescription medications that your doctor can prescribe for gas. Add new foods one at a time and keep a diary of your results. I found that... [ more ]
ashbre Hello Rosie, Sharon and Bill, I have had my surgery and it went well. 6 1/2 hours though and very painful but, the nurses and Doctors were just amazing. Dr. Cohen and his staff were unbelievable. I did have to be re-admitted with an infection and high platelets but, I am still kicking!! It is so odd without my outside pouch. I always expect something to come flying out of my stomach but, I would not change it for the world. Sharon, I was talking to one of the nurses at Sinia about you and... [ more ]
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J-Pouch ForumsGeneral Discussion
another problem
SH shawne h
shawne h Am taking Entocort that allows me to take a smaller amt. of pred. have tried methotexate as well as humira no luck. dr. says the pred is a small does so long as it works when it does not we will have to revisit. It maybe we will have to revisit soon may try remicade although the colo rectal surg says he doubted it would work. [ more ]
Jan Dollar Bleeding can occur with pouchitis, but it is not typical. If you had pouchitis, you should have frequent, loose stools and urgency (like UC). I am surprised your doc lets you stay on long term prednisone like that, even if it does work. Usually, if Imuran, methotrexate and or biologics are not effective, they urge pouch removal. Even topical steroids or Entocort are safer than prednisone. I would also worry about dysplasia and/or cancer, since it usually is associated with chronic... [ more ]
Lesandiego I bled with pouchitis. Also had intermittent bleeding that would disappear as quickly as it came with no other real symptoms (just kind of a mid abdomen cramping pain). [ more ]
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J-Pouch ForumsGeneral Discussion
Skin Tag - and maybe a few answers?
SpookySpooky
n/a I have them too - had them removed when I had my colectomy 21 years ago and had no issues with the removal. Note that I did not request the removal, it was a bonus snip. However, they are back. Kind of wondered whether it's because of the seton in there, rubbing around. They do not present any problems, so I wouldn't consider having them removed, although I know that some people with "C's" have really huge ones and do try to get them removed. Glad you are doing well! [ more ]
skn69 I know that this is a slightly skewed answer but skin tags are also associated with viruses when on the skin (not on mucosa like anuses and stomas)...I get them around the bra, near the armpits and on the neck or behind the ears...I saw a specialist for something else one day who gave me the name of a homeopathic product (the Lab is call Lehrring or something like that) that I take as drops every morning and night for 30 days...they all fell off (and my stoma didn't!!!!)...my memory is a bit... [ more ]
GinLyn Regardless of the skin tag -- and what it may or may not be from -- I'm glad you're feeling better! I hope it stays that way. Gin [ more ]
See all 9 replies...
J-Pouch ForumsWomen's Health & Pregnancy
OBGYN-advice
S shk2j
rachelraven I became pregnant naturally once. I'd say try first (they generally need you to give nature a chance, first, before jumping to IVF stuff). I never needed IVF, but never conceived but one child. Had I had more, I would have needed it, as I'd had a large ovarian cyst removed the year after her birth, and he was a fertility specialist who, based on my innards, was surprised I'd even had ONE child naturally. I requested a C section to spare the sphincters. Many non-j pouchers have very increased... [ more ]
See 1 reply...
J-Pouch ForumsHelp! Need advice now!
TIP OF JPOUCH LEAK REPAIR
PouchomarxPouchomarx
Mysticobra I don't have the problem but I feel for you having two open surgeries. I had three within a month one lapro and the two opens just about did me in because they were in the same week. I NEVER want to be opened up again. Ouch! Never. [ more ]
dtmack Hi there, My pouch perforated at the tip last September and it has been a battle ever since. The first attempt to fix it was an emergency and it failed miserably, leaving me with a fistula as well as the leaking pouch. The second and final attempt to fix was completed April 4th in Cleveland. We are waiting to see if it has held. If it hasn't, my options are a pouch redo or permanent ileostomy. Both surgeries were full open. Hope this helps. Derek [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
need help with tennis ball in belly...
I Indy_Dave
Scott F Although adhesions don't come and go, their effects do. Many adhesion-associated problems come from the intestine moving while part of it gets trapped by an adhesion, and thus can't move along with the adjacent bowel. This can cause pulling, kinks, twists, etc. When the adjacent bowel moves back within range of the trapped part, the tension relaxes. It may help to visualize a load in the clothes dryer when part of a garment (e.g. a string) doesn't tumble with the rest of the garment. The... [ more ]
Jan Dollar Adhesions=internal scars Treatment- surgical release. Jan [ more ]
Indy_Dave made an apt today...think it might be the adhesions since the tennis ball comes and goes depending on what/how much I eat....what are adhesions and how do you fix it? thanks [ more ]
See all 4 replies...
J-Pouch ForumsGeneral Discussion
Sleepy bowels
DaDDie2DaDDie2
Inflamed&Untamed First, could it be narcotics? If you're on pain meds that could cause the issue. Like Jan said, you are too far out from any surgery to have a surgery related ileus. I have chronic intestinal pseudo obstruction or small bowel dysmotility. This means my body acts like I have a physical blockage (pain, distension, nausea, sometimes vomiting) when there is no physical blockage present. If you have any questions feel free to contact me. [ more ]
RLC I recently had a twelve day stay in hospital because of obstruction/blockage. Every time I introduced a puree or solids they went down and then within a couple of days everything came up. I had CT scan w/barium and then a few other tests while in hospital. Blockage was seen and then later in the stay the intestine was just dilated. I never passed any gas but had some passing of feces towards the end of my stay (not the usual emptying out of my j pouch). I did a lot of walking in hospital and... [ more ]
Jan Dollar There is no one easy solution. Since you are quite remote from any surgery, this is not your standard paralytic ileus. I suppose they have checked your hydration and electrolyte levels to rule them out as contributing factors? How about opiates or derivatives like lomotil or Imodium? They can be a problem and some are more sensitive to them than others. You can try Googling intestinal pseudo obstruction, as this sounds like what you have. One time is not a problem, but if this is a recurring... [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
How many bowel movements per day are "normal"
D DB8MOM
Inflamed&Untamed I am going to be in the minority here but my typical is 0-3 a day. I however have chronic intestinal pseudo obstruction and gastroparesis on top of my Crohn's disease which is the reason for the infrequent trips to the bathroom. I've been known to not use it for over 2 weeks. :/ However your average j-poucher visits the bathroom around 4-8 times per day. 20 is way too much! Talk to your doctor! To the person who recommended chia seeds...just be careful. Remember that everyone is different. I... [ more ]
Indy_Dave tend to go more when I am at work due to standing all day and using my breaks to empty...once I eat something the bathroom trips start and most days ends up 8-10 with one during the night.... [ more ]
pauln DB8MOM,SOUNDS TO ME LIKE IT COULD POSSIBLY BE IRRITABLE POUCH SYNDROME,I WAS DIAGNOSED WITH IT BY DR SHEN AT THE CLEVELAND CLINIC,I HAVE TRIED EVERYTHING EVEN TINCTURE OF OPIUM,AND ARE AT ABOUT 22 B/M'S DAILY.I AM IN CONTEMPLATING PERMANENT OSTOMY.HOPE YOU FEEL BETTER AND THAT YOUR PROBLEM WILL BE SOLVED. [ more ]
See all 16 replies...
J-Pouch ForumsHelp! Need advice now!
Nupercainal then calmoseptine?
T tulsamom
wsh6745 Are you using regular toilet paper? I only use Cottonelle wipes now and very gently. Toilet paper is much too abrasive and contributes to the irritation. [ more ]
tulsamom I bet that would soak just the right spot. I'll have to make myself get over the whole sitting on the toilet to soak, though. Kind of yucky to me, but when you are in enough pain, you can accomplish great things [ more ]
rachelraven A bidet is pricier, but look into a Sitz. Very cheap, can get it at any pharmacy. I fill it with really really warm water and some Epsom salts for my fistula... Plop my butt right in it, and soak. Very soothing. [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
impending 1st step, not feeling so bad.
allswellallswell
allswell I'm Home! I think I am doing exceptionally well. My Surgeon said my surgery was one of the easiest she had done, no complications, anatomy was very cooperative. My rectum was extremely diseased, that's where it all started for me 10 years ago. I went of the pain meds in the Hospital, onto just tylenol so I was shocked. My back is actually bugging me the most. Its been one week so far, my big thing is whenever I do anything, like help my daughter with her hair, I get pretty tired and my heart... [ more ]
allswell Thanks all, but boy am I nervous. It is really hitting me today. Surgery is tomorrow. I know I need this but it sucks that I have been pretty good this last month, nothing solid, but not too much urgency, 8 or so times a day, including the 2-3 at night, still some blood her and there. I really think its due to the fact that I am on a steroid mouth rinse for a rare oral manifestation of my UC. When I would even just do steroid eye drops for my UC related uveitis in eyes, my bowels would... [ more ]
CeeeeCeeee What you are about to experience is truly a journey! The "new you" will emerge from your trip. I always refer to my status as the "new normal"! In many ways, my J-pouch is better than the original issue ever was! It's been over ten years and I have absolutely no regrets! Best wishes! [ more ]
See all 17 replies...
J-Pouch ForumsGeneral Discussion
Pouch issues triggered by exercise or allergies?
P Pluot
Pluot Thanks all. I have usually found that exercise calmed my gut in the past too, but I guess all of this is making me a bit neurotic (to say the least). I got a little worse today in terms of urgency and my consistency is still abnormal, BUT my period also just started unexpectedly. So I'm thinking all bets are off and I can't say anything for sure about what's going on with my pouch until that's over and done with. [ more ]
mgmt10 I've had this happen on occasion and I can say with a good deal of certainly that it was something I ate. Think about what you ate prior to that happening. Just a couple of weeks ago I was at a baptism party and the restaurant had the food buffet style. I didn't stop going to the bathroom for two days after that. I didn't feel sick, it just upset my j pouch something fierce. Something in that food selection did not agree with me. [ more ]
Lambiepie That's interesting because exercise always calms my gut and my headaches. However, I have a friend with Crohn's who swears that it's the change in weather that causes her flares - hot to cold, dry to rainy' etc. She said she anticipates it and prepares by staying as quiet and still as she can, kind of like "weathering the storm." [ more ]
See all 6 replies...
J-Pouch ForumsHelp! Need advice now!
Lower Back pain associated with J Pouch?
M MotherofTeenwithJP
Jan Dollar Sounds like a plan! Hopefully, just a touch of pouchitis and maybe being a typical teen and not using proper body mechanics! Jan [ more ]
MotherofTeenwithJP thanks for all the feedback! We have an appt. with his surgeon at the CC for his annual pouchoscopy and an appt. with his primary care physician. Can never be too careful after what we have been through! [ more ]
Scott F It's also worth remembering that heavy lifting can be associated with back pain. The pouch may (and often will) have nothing to do with it. [ more ]
See all 8 replies...
J-Pouch ForumsGeneral Discussion
We are all so different!
SavannahSavannah
Savannah I'm quite sure chocolate chip cookies are a vegetable. I saw some growing in the garden. Love'em fresh and nutritious. [ more ]
CeeeeCeeee Yep! My "food of choice" is anything carb! I know I don't eat enough protein. When I do, I feel so much better. For me, oatmeal remains a major comfort food. I would personally feel very deprived if I couldn't eat it. I'd better knock on wood! [ more ]
Jan Dollar LOL! Why do we crave and love the stuff that causes problems? I DO know why. It is because our brains are wired to want more when we ingest sweet, salty, and/or fatty foods. I suppose it isa survival thing to be sure our appetites are stimulated when food is plentiful. Never know when the next famine will occur! Of course, those genes predate supermarkets... Jan [ more ]
See all 10 replies...
J-Pouch ForumsHelp! Need advice now!
High heart rate
LL Lovin Life
Jan Dollar That sounds about typical for dehydration. Not dangerous. A resting rate over 100 is considered abnormal, but is not dangerous. Usually it is due to dehydration, anemia, fever or anxiety. I developed heart rates over 230 (too fast to register on my home BP cuff) a few years back. I was OK, but had to have a cardiac cath procedure to fix it. It was completely unrelated to my j-pouch. Jan [ more ]
res I typically have a high heart rate in the 100-110 range. If it gets higher than that and I start getting dizzy and have a nagging headache, I head to the ER for 2-3 bags of fluid. [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
had pouch advancement surgery this past wed the 21st + musectomy
dgtracydgtracy
Jan Dollar Mucosectomy simply means removing the mucosal layer, not sectioning the entire bowel wall. So, in this case, a 3cm cuff was reduced to 2cm and the mucosa was "stripped." Sounds simple, but far from it. Mucosectomy requires a lot of technical skill to avoid damaging the nerves at the dentate line (transition zone between the rectum and the anal canal). It is not like peeling a banana, but involves injecting fluid under the mucosa and carefully dissecting it away. If done completely, the... [ more ]
boy's mom I thought a muscetomy meant handsewing and no rectal cuff was left with a muscetomy? Jan - could you elaborate about men more often having a longer cuff? My son has a long cuff and no one has given an adequate explanation of why that happened. Good Luck DGTRACY. I hope you have a smooth recovery and great outcome. [ more ]
Scott F It's worth asking the surgeon what led to the choice to retain 2 cm of rectal cuff. The hand-sewn procedure is extremely delicate, and I wouldn't want anyone to attempt it on me unless they had lots of experience with it. In any case, the mucosectomy removes the inner (mucosal) layer from what's left, which should prevent the inflammation that caused the problems. I hope you have a great outcome! [ more ]
See all 5 replies...
J-Pouch ForumsHelp! Need advice now!
Cleveland clinic offered me a job!
Uc-DanielleUc-Danielle
Savannah What a compliment to you, Danielle. Congratulations and no more worries about the physical. We all worry too much!! [ more ]
Uc-Danielle Wow you all have helped me feel a lot better!!! Thank you for the congratulations!! It's a cardiac monitor position. So no lifting no standing for long times nothin like I'm doig with the current job I have (Carryout/person in charge) at a grocery store. The job requires hardly any lifting considering it's a job that you sit as monitor on a computer the ekgs arrthymias of patients. I am just very nervous considering what I've had done, and the fistula problem I'm dealing with. Seeing what... [ more ]
techwrench The examining physician will probably ask if you have any restrictions like lifting,or number of hours per week you can work ect.The primary reason employers do post offer exams, is to protect themselves from a fraudulent work comp. claim down the road.Say for example, someone claims they hurt their back on the job,or was exposed to something that caused them to glow in the dark. [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
not enough water
SH shawne h
Savannah I drink lots of plain hot water. I have a good jolt of coffee in the morning and then no more caffeine. I just try to keep drinking all day. Sometimes it helps me to drink a full glass of water before I get out of bed. I know what you mean about wanting to keep things moving. I don't worry about frequency of trips to the bathroom very much but I do worry when it's hard to empty or I even have the feeling of being blocked up. That is so uncomfortable and my belly swells like I swallowed a ... [ more ]
Shainy drink some coffee [ more ]
Pixie I have this problem with my pouch too. If things get too thick I find it very difficult/uncomfortable to empty my pouch. I drink a lot of water throughout the day now, I find that if I drink small amounts at a time then I don't have to pee as often as if I drink an entire glass of water at once. I have a water bottle with me at all times and just drink drink drink. When my pouch was new I would sometimes drink a bit of warm prune juice to empty things out. Green tea works for me as well. On... [ more ]
See all 6 replies...
J-Pouch ForumsGeneral Discussion
Bougie Dilation for Stricture
J jpouchmike
BillV I was one of the first at Mayo Clinic to have an IIAP (ilium sewn directly to the anal canal with no pouch). When the storage area did not develop as expected, my surgeon had me insert a Foley catheter a couple of times a day and inflate the balloon at the end. The intent was to expand the ilium. This was done at home by myself after my surgeon instructed me by phone. While this helped somewhat, I ultimately had another surgery to create a pouch. Your situation is different than mine, but... [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
New med question
M Megals
DairyAirRN Got the white paper from ASCRS meeting last weekend. Going to have to study up on it a bit more. Was hoping some of you guys could offer some first hand info. [ more ]
Megals It's a serum-derived bovine immunoglobulin/protein isolate (SBI), and is made up of beef proteins. It's supposed to help better absorb nutrients and thicken the stool. But pretty much the only info I could find about it was on the drug's website. I work in a hospital pharmacy and no one there has even heard of it. Was hoping someone here had some experience with it. [ more ]
Lesandiego Here is what I found.... prescription medical food product for the management of diarrhea-predominant irritable bowel syndrome http://www.enteragam.com/ [ more ]
See all 4 replies...
J-Pouch ForumsHelp! Need advice now!
Prep for scopes and scans
L LisaT
clz81 For my MRI and CT scan, they tried to get me to drink 4 of those containers of contrast. I was like "are you crazy?". I cannot stomach those especially on an empty stomach so both times I only got about 1.5 of them down. I saw my scans and pictures were great. The MRI was cool, because I could see that my entire pouch was full of the stuff...definitely don't need the 4! [ more ]
techwrench Oh, how true! Two months ago,I had my 4th flex sig. of the pouch with no sedation.Those folks are so used to routine,that they just don't know how to think outside the box.I ignored the "orders",and just drank clear liquids starting the afternoon before the scope. After I checked in, they all acted like it was unheard of to not have sedation for a 7 or 8 minute flex sig. I once had a bad experience during an ERCP,where they pushed a lot of fluids before the procedure,and the first sensation... [ more ]
Jan Dollar Rather than going in circles with the tech, I ask them to tell the radiologist (MD- not the person performing the scan) that I have no colon, so less contrast is needed. Their concern is to be sure the entire GI tract is outlined, not that you suffer. They just have their instructions, and I suspect they frequently get the complaint that the patient cannot do it. Same with the scope prep. Once the doc is asked, I have new instructions. However, I've been to this rodeo enough that my GI just... [ more ]
See all 4 replies...

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Bill Johnson founded the J-Pouch Group in 1997.

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

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