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J-Pouch ForumsGeneral Discussion
Pouch advancement recovery
Jan Dollar Allycat and dtmack had pouch advancement surgery. Here is a link to a prior thread. You can access their profiles there and send them a private message if you want to discuss it with them. http://j-pouch.org/eve/forums/...337097126#8337097126 Jan [ more ]
kathy smith Have you PM'd jeanne? I think she might know something about pouch advancement. kathy [ more ]
Dog Never even heard of a pouch advancement surgery, sorry. Hopefully it won't be painful! [ more ]
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J-Pouch ForumsGeneral Discussion
Salt as an autoimmune trigger?
kathy smith I also read that Steve. But it's one of those things that I probably won't be reducing or eliminating. I mean, really? Potato chips? French fries? Nope, still a staple. kathy [ more ]
Jan Dollar Interesting, Steve. Of course, there are a myriad of reasons why you should restrict your salt intake (except in the early post op months when you are likely to be salt depleted), so no surprise there is another reason to toss on the stack. Funny though, we were not big salt consumers when I was growing up. Mostly freshly cooked meals, no salting at the table, and seldom went to fast food joints or got goodies like potato chips. Yet, here I am. Now, my son is another story- lover of snack... [ more ]
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J-Pouch ForumsGeneral Discussion
Take down was a week ago
lovedby2 I try to stay put as well. When I do have to change positions, I try to go very slow. Like I said earlier, I get after my husband, he's bigger than me, so his movements really shake the bed. At first he didn't understand and would get upset, thinking I was just nagging.. but he now knows, I mean it! Heidi [ more ]
CeeeeCeeee Changing positions moves the effluent from one part of our pouch to another. When it puts some pressure on the sphinctors, it signals having to go to the toilet. This sort of keeps me sleeping in one position for as long as possible. If I do turn over I do need to visit the bathroom in order to be comfortable. Oh, well! [ more ]
Av8erchic I purchased a heating pad after my surgery. It's been really helpful on days that my tummy hurts. They're fairly inexpensive and it might help relieve some of the pain associated with being bloated! [ more ]
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J-Pouch ForumsGeneral Discussion
I shouldnt have trusted that fart last night....
Murray 3 weeks post takedown and Im farting like I use to. but I will admit I had one sneeker this week, wasent big, but yuck. [ more ]
lovedby2 You are right, I never push, it just happens! Lol. I can remember my first, it happened in the hospital. I had complications, so I was there almost 20 days. But when it finally did happen, a male Chinese nurse was at the computer LOL he turned and looked at me with a bug smoke.. was that you, he said... Yes!! We both cheered hahaha [ more ]
Jenmystique uh oh. I've been lucky but it wasn't me trusting them. It just happened. And it's only been 3 weeks. I have a long away to go to have many accidents. [ more ]
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J-Pouch ForumsGeneral Discussion
Medical Expenses Tax Deduction
Lorsall Yep, we have qualified for the past four years and it is looking good for our 2013 taxes as well. I have already had one surgery ths year, and it appears the implanted device is malfunctioning, so we are probably looking at another surgery soon. My pouch has been misbehaving, so I am seeing a C/R surgeon next week to see if he can help, and if not it is off to Cleveland in April. We have insurance, but still pay a lot out of pocket, and I have not been able to work due to my health, so our... [ more ]
Stone I hope to God I can get back anything I spent on my medical bills. I definitely went broke after my surgery. I don't no when i'll ever get back or at least half back to where I was. There was another post someone put up about eating fruit. Fruit is the best thing ever if you can afford it. Out here cantelope is like two for six bucks thats three bucks a piece outrageous. If our president would look at us and realize it's not our fault we got sick and repay us back what we paid I think it... [ more ]
Subzeromambo We have met it for the last three years. [ more ]
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J-Pouch ForumsGeneral Discussion
vitamins?
CTBarrister You are still growing and you need to have strong and healthy bones. Vitamin D and calcium strengthen the bones. I also take vitamin D and calcium, this due to slightly low vitamin D levels and an osteopenia finding in my bones. [ more ]
Jan Dollar They only put you on high doses of vitamin D if your levels are low. It may not even have to do with your surgery, as people with IBD tend to have low D levels as compared to the normal population. They used to think that vitamin D only prevented rickets, but they now know it has properties like a hormone. It still is not fully understood and they are still researching it. You may need long term supplementation. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036961/ Jan [ more ]
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J-Pouch ForumsGeneral Discussion
One thing to another insurance denial!
mgmt10 Don't let this slide. Fight it! That's ridiculous. [ more ]
Jan Dollar And they wonder why everyone hates insurance companies!! OK, I suppose that nobody wonders... I guess they are presuming that you actually checked into a luxury hotel, and was not admitted to the hospital by a physician? But, seriously, I think this is probably just an error in regard to your actual diagnosis, and how it was coded... Jan [ more ]
JillM Ditto - fight this one. Recoding might help. You definitely need to get covered for this since it is a result of the condition they are covering. [ more ]
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J-Pouch ForumsGeneral Discussion
Takedown this week! what should i know?
Av8erchic I would keep in mind, too, that you might not have all of the issues that you see on the message board here. I was so worried before takedown about everything that I'd have to deal with afterward, based upon what I was reading. I've not had many issues-but the ones I have had, it was so nice to be able to come here and ask if it was something common or if I needed to call the doctor. I'm 9 weeks post-takedown and have no complaints about having a pouch-other than that I am upset that I can't... [ more ]
D. Nocerino USE WIPES!!! Its been exactly 3 months after my take down and I still need them I cannot do toilet paper. Stick with the set diet and after a month start to play around with the diet a bit. If you have butt burn or itching at any time, berrier cream helps but sist baths with baking powder is heavenly and solves that problem instantly. The best of luck and have fun!!! [ more ]
LisaB827 Thanks Holly! What foods are the safest to try first? Pasta, bananas, and rice are the first things I would think. My surgery is tomorrow...I'm excited to be done with the ostomy but nervous about adjusting to the pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
frustration with people assuming I am well
Jan Dollar My husband and I have been together since we were both 15. I was diagnosed with UC, pancolitis, shortly before my 16th birthday and spent a month of my summer vacation in the hospital. It wasn't until nearly 40 years later that he said, "I finally understand what you have been dealing with all these years." What brought on this epiphany? HE was diagnosed with UC! And his case is pretty mild, confined to the sigmoid colon. Anybody who does not live this will ever truly appreciate how it... [ more ]
lovedby2 To add. Spooky you posted a very good point as well. Every time I'm at the hospital/Dr office I hear, you're only 31, you're young and that benefits you. Or, you're too pretty to be going through all this! What in the world!! [ more ]
lovedby2 I'm throwing myself a pitty party today. I'm tired and nauseated. The last 3 nights of getting up 7+ times. I take full advantage of the better days because when the going gets tough it runs me ragged and then it takes a few days to recover. And no, no one understand, even my husband, who tries to be compassionate about all this for me. Every time family comes over, ... You are getting over all this aren't you, you have color in your face! Or... So glad all this is behind you now!... And the... [ more ]
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J-Pouch ForumsGeneral Discussion
Just had my appt. hope this new stuff works :(
magsroo I have fissures that cause me pain with every bowel movement. It actually spasms in that area and the pain can be unbearable. They originally gave me Nitroglycerin ointment to help heal the area but it burned like a mother and made things worse. So, here goes the next try of meds... [ more ]
TE Marie Darn, I hope it all works out well for you. I've never heard of that medication before. What is wrong? [ more ]
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J-Pouch ForumsGeneral Discussion
Perocet
Manchester I'm on 240 30mg codeine per month purely as titration to constipation. And 400ml oramorph for pain per month. [ more ]
Pouchomarx i have been on a low dose of Oxycodone 5mg to use as needed. I get qty=100 for 3 months. some days i dont take any, some days a few throughout the day. I have some painful spasms and all of the anti-spasm meds give me horrible blurred vision. cant see anything. [ more ]
TinCan I don't take pain meds on a regular basis, but I know what you are talking about relative to percocet. I have found that oxycodone and codeine are the only drugs I have used thusfar that really work for me in terms of pouch happiness. I was never in that much pain during or after surgery 1.5 years ago and had most of my supply of percocet left over. Whenever I am feeling bad pouch-wise, or am traveling and am not certain where my next bathroom stop will be, I will take a percocet (or... [ more ]
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J-Pouch ForumsGeneral Discussion
spondilitis and J pouch
KiwiPoucher I am resolved to the fact that there will probably never be a cure for me. Not being negative or depressed, but just realistic. If all options fail and I end up bedridden again in unbearable pain I have made sure there is a way out. After everything I have been through and the years of suffering, I have legally made sure that my wishes with regard to treatment given to me in the future, or more appropriately NOT given to me in the event that I can no longer do things for myself and in... [ more ]
Lu31 Hi, I had UC when i was 15 and in my early 20s started having joint issues. Like others have mentioned as well, most of my tests showed "everything was fine" but based on my UC history and symptoms, it was diagnosed as sacroilitiis. My rheumy says there is a link between bowel issues and joint issues (only a bone scan actually showed inflammation). And actually, at every appointment with my rheumy, one of the first questions he asks is "how are my bowels doing?" For me, I take celebrex daily... [ more ]
Jan Dollar Might be a good strategy. Here in the US, often biologics may be initially denied coverage, but then approved if NSAIDs ahve been tried and failed or contraindicated due to side effects. Other than methotrexate and sulfasalazine, there really isn't anything else. Plus, sulfasalazine is mostly just for the peripheral arthritis. I've been on it for what seems like forever. My rheumy suggested I try tapering off of it, since I was stable. I was taking 3 grams a day. I reduced to 1 gram a day... [ more ]
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J-Pouch ForumsGeneral Discussion
Sore sore arms from infiltrating IVs
Pluot I infiltrated my own IV once right after surgery because my left hand felt "asleep" so in my post-recovery haze I kept squeezing it trying to "wake it up," until the IV totally infiltrated. I think the nurse was pretty peeved at me. Anyway, I don't think it was particularly severe but it did hurt and I found massaging it helped a lot. [ more ]
Spooky I was in the hospital for 5 weeks at one point with an IV the entire time. My veins were sore and enlarged for a few weeks after I was finally discharged. However, the pain wasn't severe. I agree that if you are having severe pain you should definitely get it checked out just to be on the safe side. I have a "go to" vein in my left arm, too. The last time I had a blood draw, the technician remarked that he could see "scar tissue" on the vein and said that I must have had a lot of IVs/blood... [ more ]
Uc-Danielle Ihh65- I hope that doesn't happen since one vein is my main "go to" when there is problems sticking me [ more ]
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J-Pouch ForumsGeneral Discussion
Does anyone here have FAP?
David1969 Thank you Zee. I am sorry that you have been through so much. Like you I have many polyps in my stomach and duodenum. I did not even know about problems involving the thyroid until I went to the Cleveland Clinic in 2010. 12 years after I was diagnosed with FAP. You are obviously a very strong person and a source of inspiration for everyone! And if you need to vent or just talk, feel free to message me. Please vist our new FAP support group site and share your story. [ more ]
Zee87 Hi David, I don't know of you're still reading these threads but I just wanted to say I was diagnosed with FAP in 2010 (I was 23 at the time). If you need to vent or have any questions please feel free to send me a message! Agreed, this condition can be frustrating. Since my FAP diagnosis I had colon cancer and thyroid cancer, and have polyps in my stomach and duodenum. It's not easy but it might make things eaier to know you're not the only one! [ more ]
BeckyM Hi David I found out in 2005 that I also had this horrible disease. I dont know as much as chuckus but I am here if you need help ro have any questions or just want to talk, I have a polyp on my major too and I am not certain of whats going to happen but I ope it is going to be a easy removal. Maybe you can help me understand what removing the major ampulla is going to be like for me, Anyways its good to have you here and feel free to ask anything, chuckus is the FAP wiz so he knows probably... [ more ]
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J-Pouch ForumsGeneral Discussion
Avascular necrosis??
LisaT I fell out of bed one day and couldn't walk. I went to my internist who did xrays, then to the ortho and the diagnosis was made. Honestly, the hip replacement was a "walk in the park". I had surgery on Monday morning and walked to pt on Tuesday morning, and went home on Wed am and walked up the stairs to my bathroom. I know that no surgery is easy, but compared to the other surgeries I've had, it was no problem. Good luck! [ more ]
Uc-Danielle What were symptoms so I know what to look for? [ more ]
LisaT I have AVN in both hips and subsequently, have had total replacements on both. [ more ]
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J-Pouch ForumsGeneral Discussion
Tell me about inflammation in retained rectum
Pluot Spooky I think it's the opposite, I'm so glad to hear that you're doing well now post-takedown despite having such persistent trouble with the rectum between surgeries. Sounds like the inflammation in the rectum is quite common and doesn't mean I'll necessarily suffer cuffitis later, which is definitely a load off my mind. Strangely I think I might finally be responding a little to the Canasa. I passed bloody mucus from the rectum 5 times throughout the day on Saturday (by far the worst day... [ more ]
Spooky Hate to be the bearer of bad news, but I essentially had a continuous flare in my rectal stump from the time of my emergency subtotal colectomy, until the stump was finally removed 2 years later. I had bleeding, mucous, pain, spasms--you name it, it probably happened. I had some varying and temporary success with Entocort and later Cortifoam (the Cortifoam worked well to settle things down sometimes for up to 3-4 days at a time, but I had to keep using it several times a week, and at almost... [ more ]
lovedby2 I'm 4 months post op takedown. I too had the 3 step and had my rectum removed in step 2 due to UC forming in it after step 1. Like someone mentioned above, it literally is a pain in the bum! My butt hurt for a good month and a half. Nothing helped prior. Diagnosed with unresponsive severe ulcerative colitis august 2011 Step 1 April 2012 Step 2 August 2012 Step 3 October 2012 Several complications in between [ more ]
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J-Pouch ForumsGeneral Discussion
Anal Alteration
KiwiPoucher I definately don't have a stricture. I like you am certain that my anastomosis has always been at a backwards angle. A flap of skin has grown down one side where the ilieum has been pulled through and sewn back on itself, front to back which is now deflecting it even more. Will post an update when I have seen my surgeon, which hopefully will be within the next few weeks. Caroline [ more ]
jeane If this a stricture st your anastomosis ? I have similar issues, especially with back output and I believe my anastomosis on in an angle sbd I also have a stricture with scar tissue that they have tried to dilate a few times. When it reslly acts up it is like passing stool through a plugged up opening which causes the symptoms you are describing. Not pretty I know. My surgeon had suggested pouch advancement i am curious what your surgeon is suggesting. If it is pouch advancement there is a... [ more ]
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J-Pouch ForumsGeneral Discussion
Cleveland?
Uc-Danielle CCf is Cleveland clinic foundation I'm 99.9% positive lol been there enough I should know [ more ]
Schopenhauer Poucho....You mentioned that Lakewood is a 20 min drive to the "CCF main campus". What is that? All I can guess is some sort of Crohns Colitis Foundation hub located at a school. Is it the Clinic?....maybe the place I'd have to see a doctor or get my surgery? Sorry to be dumb but lol....that's why I'm here I guess. [ more ]
Schopenhauer Thanks Liz. Do you know: Is Cleveland Heights big? Are there good and bad places to be in it? Should I look for a place near Coventry Village or is it easily accessible from all over Cleveland Heights? Is Coventry Village as cool as I'm making it out to be or is it basically just another outside mall? How far away are they from the Clinic? Would you rather be in University Heights which is closer, or Cleveland Heights which is greener? [ more ]
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J-Pouch ForumsGeneral Discussion
Antibiotics and inflamation pain
skn69 Hi, How are you doing? Something in the arthromycine family, I was on agumentin for 2 7day runs and I only had ligament pain but now I cannot hold a chopstick (went for Chinese yesterday)...the hands hurt too much...just wondering if it is me or the antibiotics. How is your daughter doing now? Sharon [ more ]
beckysmom Hi Sharon, Sorry to hear about your bronchitis. Haven't been on site for a while. When my daughter was on cipro her joints ached. She could hardly hold a pencil. Are you taking cipro or something in that family of antibiotics? [ more ]
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J-Pouch ForumsGeneral Discussion
Does anyone else have an uncontrollable Thyroid?
TE Marie Thanks cassiecass! (please see my PM) The T3 and T4 are are the two things I was thinking of. They are only testing one and are not able to regulate it in me so they need to analyze both, correct? While I didn't understand everything in the article, I have a better understanding of what my GI specialist was saying. He oversimplified his explanation, to say the least. I wish I'd gone to see my endocrinologist a year ago. I know what I'm taking is the same as synthroid, I just don't remember... [ more ]
cassiecass TE MARIE WWW.THYROID.ORG There is an article this week on migranes and hypothyroidism. I hope my retention of fluid is related to the thyroid and not my heart. T4 is the thyroid hormone,to which we are taking.Whether you take synthroid or levothyroxine it is known as T4. If you have facebook log to and join for the latest info from the American Thyroid Association weblink.You do not have to be a nurse or Md to read. I also have neuropathy in my feet.Hate it at night. This week my pouch has... [ more ]
TE Marie Cassiecass, I lost a lot of weight the first year after take down, even with a messed up thyroid. I was so sick I had to make myself eat. Now I've gained some back. My hair is falling out again, another big wad in the shower drain this morning. I feel hopeless at times as I can't seem to get any of my medical problems stabilized. I'm not overeating but am also not moving much. Exercising is tough with my neuropathic feet. I don't know what T4 is, I better study up. Thanks for the link. I... [ more ]
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J-Pouch ForumsGeneral Discussion
Cuffitis versus Pouchitis?
liz11 you can positively have both at the same time. or even one at a time and then another later. [ more ]
Kia I'm definitely no expert in here but, from posts I've read, I think you probably can have both. It took my reading a lot of posts to understand the difference as I think the symptoms can be similar. I'd suggest searching on cuffitis and pouchitis in this forum to get a full understanding. In very brief summary, my understanding is cuffitis is caused by remaining tissue with UC where the pouch is connected. Pouchitis is an inflammation within the pouch caused by bacteria in the pouch. [ more ]
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J-Pouch ForumsGeneral Discussion
Probiotics & Antibiotics
TE Marie Thanks Mary, I'm taking the s. boudarli or whatever, and thought it was a probiotic and was a bit confused as it's a yeast. I'm taking it with my VSL all the time as it's good for c-diff prevention. I'm glad your insurance covers the lower dose of VSL #3 as it makes sense that a younger person doesn't need the DS dosage. [ more ]
Rowans mom I am a bit late to this post, but while taking antibiotics you should take Florastor, (s. boudarii) it is a probiotic but a good yeast where as VSL is good bacteria. That is why it is not in VSL. The yeast doesn't get destroyed whilst on antibiotic. I give florastor and make the switch back to VSL after my antibiotics are gone. Then I hit it hard with the VSL we do 400+ billion a day which is 1 regular sachet of VSL for two weeks and then titrate to 200+ billion. Hope this helps. The VSL... [ more ]
TE Marie The only probiotic some insurance companies cover is VSL#3DS. I checked with my insurance company before I started taking it. It has to be the DS with 900 billion vs VSL#3 that has 450 billion. It doesn't have the probiotic in it that Jan is referring to so I bought it from Amazon.com for $14, 90 - 5 billion capsules. SO I am taking 2 a day. Thanks everyone for confirming the dosage. [ more ]
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J-Pouch ForumsGeneral Discussion
Acquiantance just had colectomy due to cancer risk
Kia You guys are the best. Luckily, I've avoided the hospital for many years, but I had forgotten the little things that are truly appreciated! She's my husband's coworker's wife, so I only met her once. It was at a company party where we huddled in a corner and she asked me what to expect. Since we don't know her well, I'm just sending up 2 different scented lotions, 2 magazines, balloon and card. It's not a lot, but hopefully she is able to enjoy them. Thanks! [ more ]
CTBarrister I recently bought my cousin one of those "pet pillows" which is a pillow that has the head and feet of a bear, but it also has a strap that folds up into a velcro patch on the belly side, so that it looks like a stuffed animal rather than a pillow when you strap it or velcro it up. In other words, it can be used as a pillow or as a stuffed animal. The one I bought has the NY Giants logo on it and I bought it at clearance sale of Giants merchandise at Bob's Stores. Here it is - I got it for... [ more ]
liz11 eye patch thing so she can sleep at night or some kind of hand creme or a little stuffed animal. all could be got from the gift shop at any hospital. [ more ]
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J-Pouch ForumsGeneral Discussion
Never seen remzi so mad.
Uc-Danielle Thank you so much. And we learned that the hard way. So did my nurses they act so different when He's around and they jump at his call. I mean I would too. But it was just very frustrating yesterday and he was so mad and upset Bc I was in pain. Than you for all these tips!!! [ more ]
liz11 omg danielle that sucks. who are your nurses? I had absolutely great ones. If you are still going to be there for awhile ask about a PICC line. Tell your mum to remind all the nurses that remzi is your doctor. That's what my hubby does. They jump when you say that and then they really kiss up to your sore little bottom!!! hugs. [ more ]
Uc-Danielle Thank you. It was rough my right arm hurts so bad and she about list it when he got upset and he just texted my mom Asking if I was ok. And that he will see me and wanted me to have space Bc it was a lot of traumatic events. [ more ]
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J-Pouch ForumsGeneral Discussion
Nurses some good some not so good
Uc-Danielle Funny you said that we just talked to one. But we need to add the nurse from today on there. It's like she's questioning my pain and not caring [ more ]
liz11 danielle.. tell your mum to speak with a "nurse manager" immediately. You should not be suffering like this. Your mum can do this in a calm, polite way,.. and you will see results. Trust me. My hubby has had to do it before. And it works. [ more ]
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J-Pouch ForumsGeneral Discussion
Hello!
Cody44 Thanks everybody. And yes, I dehydrate at the drop of a hat. I'm 6'1'' and 135-140 pounds and no matter what I do I can't gain and I can't stay hydrated. But I'm VERY active, so I'm not complaining. [ more ]
Rosco79 Hi, I am similar to you in terms of surgery and UC diagnosis. I currently take loperamide (same as imodium), 2 x 2mg capsules three times a day before meals. I am sure this helps me a lot. I don't drink enough and since upping my water I do feel better than I did. I did have a stomach virus last year that gave me sickness and diarrhea and ended up in hospital as I was severely dehydrated, that happened super fast and was quite scary. I am currently underweight and in attempts to put on... [ more ]
Uc-Danielle quote: 1. Do most of you take daily meds to cut down your bathroom trips? 2. Do most of you suffer from dehydration frequently? 3. Do you work out much or any if so do you have any issues? 1. I use Imodium but have quit since I'm back in the hospital and having issues with pain and fistula 2. No but I drink a lot of water and keep g2 Gatorade handy 3. I haven't worked out Bc I have lost a lot of weight from my surgeries and wanna gain some weight and my takedown was recent so I don't want to... [ more ]
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J-Pouch ForumsGeneral Discussion
Soooo tired. What do you think?
Kia Good grief, had no idea I could sleep so much. Usually I feel miserable if I don't get up early (even with the years of sleepless nights). I'm pretty in touch with my body, as we all tend to be in here, so I don't feel it's any more than catching up on much needed rest. But, wow, glad the kids are school age!! I have to go to a wedding reception tonight and really don't want to go. I feel fine, just want to sleep. I guess I should stop whining and just be grateful for the relief! [ more ]
Kia Thanks, folks. :: hits head on desk, snoring:: lol [ more ]
Jan Dollar Imodium can cause drowsiness too until you acclimate to it (it is chemically similar to opiates). Some people are affected more than others. Plus, now that you CAN relax, your body is wanting to catch up on some needed rest. Once your pouchitis symptoms were brought under control, your body could slow secretion of stress hormones like adrenaline and cortisol, and the result is a need for sleep. It just probably has been a long time for you since you were able to truly rest! Jan [ more ]
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J-Pouch ForumsGeneral Discussion
Any Help
Jan Dollar What about codeine or other opiates to slow things down? I'm sorry, but when things are really bad, I don't think that you can control it by diet alone. With the fiber, the type of fiber can make a difference. Some people are sensitive to psyllium fiber and it has a mild purgative effect and causes excess gas. In that case, maybe methylcellulose (Citrucel) or wheat dextrin (Benefiber) might suit you better. Another option is chia seeds. For me, fiber supplements might have thickened things,... [ more ]
Tiberius Imodium and lomotil have not helped me at all. I was starting to get the bad side effects from lomotil and have been keeping away from using it again. I have tried fiber also, but I get different directions from the doctors on how much to use. I am still at 20 times per day. I personally am not going to consider a permanent ostomy because of the problems I had with the bag during the J-pouch process. I am interested in reading what dietary suggestions people have come across along with the... [ more ]
Onwisconsin It may also be time to consider a permanent ostomy if things do not improve long term. It is not great to hear, but having no colon plus crohns and the frequency may mean life is easier with a permanent ostomy. Obviously you and your doctors will know what to do and when to discuss that option, but there are plenty of people who handle a permanent ostomy and life is just fine. [ more ]
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J-Pouch ForumsGeneral Discussion
Do you still have colitis after surgery?
Spooky Unfortunately, this. Also, you can go on to develop cuffitis after surgery, which is just UC in the small, left over portion of rectum. [ more ]
Jan Dollar Yes, it is correct that colectomy cures the colitis, but as mentioned previously, you still have the same genetic make-up and autoimmune disease. You can still get some extra-intestinal manifestations, and some people find out that they never actually had UC, but it was Crohn's all along. And yes, it is also true that a diagnosis of UC (and most autoimmune diseases) disqualifies you for bone marrow donation. http://marrow.org/Join/Medical...stry.aspx#Autoimmune But, you can donate blood. [ more ]
liz11 you still have IBD. IBD is a systematic disease and just because your colon is out doesn't take away the whole disease. Its a very different scenario than a broken wrist. That is just a localized problem. IBD is systematic. sorry for the bad news. [ more ]
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J-Pouch ForumsGeneral Discussion
It's all over
TE Marie Just because the surgery is scheduled doesn't mean you should stop fighting to get rid of the infection. Some people here in the USA have pouch repair surgeries. I don't know if it is possible in your case but if just a small part of it is bad, there was a leak or hole in it (?), maybe that could be removed and the pouch closed - made smaller, or something like that. It's my understanding that pouches stretch some with use. Even if that can't be done you have right up until they start to... [ more ]
lovedby2 I understand! It is very difficult for one to go through such major surgeries just for it to not even work in the end! I was on metronidazole and cipro up until about a month ago. So about 2 1/2 months on and I did notice a big difference when I would stop. Full blow flare ups it seemed like... I really thought I was going to be going back to an ileostomy and was thinking, that would be better than what I am going through right now... the pain was so severe, I had to keep myself drugged up... [ more ]
dodge Thanks Heidi The only meds I've ever been on since this all started has been more or less constant Augmentin and a brief spell on metronidazole. I'm in the UK and dont really know where else or who to turn to. My surgeon is highly regarded and im not sure where else to go. Whenever I've stopped the antibiotics the infection just gets worst. I've been told to stop them after today (7 day course). I just want to connect my pouch to at least give it a chance! [ more ]
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J-Pouch ForumsGeneral Discussion
Doing well on Flagyl, not ready to give up Immodium
Jan Dollar That's a relief! There have been folks here who actually want and expect a solid, firm stool... Jan [ more ]
Kia Thanks everyone. By "like someone with a colon", I only meant that I feel well/solid. If I approached anything that looked like a normal BM, I'd be scared! I'll definitely keep a close eye on things. Thanks, again. [ more ]
CTBarrister I can second Jan's comments. When I started taking antibiotics back in the 1990s and did not really know anything about them, I figured I could take as much imodium as I pleased. As I increased my antibiotic dosage I ended up stone constipated and this caused a horrible bout with pouchitis. It is NOT a good idea to strive for bowel movements like what you had when you were coloned. It is not going to happen naturally and it shouldn't. You do not have a colon anymore and the pouch is designed... [ more ]
See all 5 replies...
J-Pouch ForumsGeneral Discussion
pain + healing + passing gas
Jenmystique Oh yes.. and I already knew from this site and my doctor to not "trust" a 'fart' and I typically don't. But I have woke up three times thinking I might have had some leakage issue because I knew "passing gas" (or 'farting') was what woke me up. I'm happy to report those three times it was not leakage but little bitty bits of air and that was all! Still don't think I'll trust my rear for a long long time awake. Simply because I have bad luck as a rule. [ more ]
See 1 reply...
J-Pouch ForumsGeneral Discussion
Low iron
Cody44 I startd seeing a hemotologist after my take down, and they discovered I was badly iron deficient. For the past 8-9 years I have had 5 Iron infusions, oral does nothing for me. I got the first 2 6 months apart, then a year, then a couple years and got my latest one last summer. Both my doctors say it's due to absorption issues. I do not know about the vitamin D. [ more ]
Scott F It's hard to become iron deficient without bleeding. Menstruation does count as bleeding, unfortunately, which complicates explaining things, and is why premenopausal women need dietary iron and often supplementation, and men don't usually need iron supplements unless they're bleeding from somewhere. Once you need iron to replace what's lost through bleeding, absorption can sometimes be a factor. I don't think a pouch affects this much (though I'm not an expert), but if you're having short... [ more ]
See all 2 replies...
J-Pouch ForumsGeneral Discussion
anxiety and its effects
Spooky Anxiety really is terrible, and can cause a crazy number of symptoms. I do get a very tense neck and a feeling of "heavy head" when I'm particularly anxious. I mentioned in another thread, I'd rather deal with the physical issues than with the anxiety. [ more ]
jeane Lab, I have to admit I rely on xanax since my surgery. I also have a 19 year old teen who is struggling for her place in life, a father who is ill and many jpouch issues since surgery, on top of menopause. I could not imagine having to teach young children on top of all of this. I find the xanax cuts the edge for me without making me loopy and I try to only take it when feeling very overwhelmed by some of the issues I have been dealing with. Maybe it is an option for you. Be very careful... [ more ]
Uc-Danielle I should probably be on something for anxiety but when I'm anxious/stressed those are the areas that bug me. Head hurts, neck, shoulders and back all tight. [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Results from eua and Dr. Remzi
Uc-Danielle Yes! And I got the vibe he feels like its his fault in the or he was like was it the guy who did your surgeries meaning my pain I was like no not at all but he was like Danielle I thought I was going to have to tell you that a ileostomy would be better but he said that it wasn't that bad. Thank god even tho like I said I could live with it Bc it's still better than uc! [ more ]
TE Marie I'm glad he is encouraged by what he found! It sounds like it could ah! [ more ]
Uc-Danielle He also wants to continue to keep an eye on this and keep doing what he is. He also is going to ask dr. Shen about the avascular necrosis how important it is Bc I don't have any symptoms...yet. Thank the lord [ more ]
See all 3 replies...
J-Pouch ForumsGeneral Discussion
Finally got the coveted flagyl...pros and cons
Kia As always, thanks for the very helpful information. And, Jan, yeah, I am over the VSL thing. If they get the denial overturned and I can fill it tomorrow, great. If not, I'll wait to see what's in the cards with our new insurance that's effective 3/1. Thanks for providing perspective! [ more ]
Jan Dollar For me, alcohol and Flagyl is no problem. I'm sure it is one of hose individual things. Jan [ more ]
CeeeeCeeee My only complaint about Flagyl is that taking it pre-empts my nightly martini! [ more ]
See all 7 replies...
J-Pouch ForumsGeneral Discussion
American diet, getting away from it
LC Have you tried blending your fruits and vegetables? I didn't eat a lot of fruits and vegetables because they would sometimes block me up (salads are an exception for some reason). My mom just gave me her Vita-Mix since she wasn't using it and its been amazing. I can eat anything blended in huge glasses and not have any adverse pouch events I was making spinach, apple, orange, berry smoothies and I didn't even get gas. Also its a lot faster than cooking them to mush. [ more ]
TE Marie PlantFusion has been the best thing that I've changed to as a vehicle to get protein and those darn fruit servings into me and a banana is usually in each one as well. I use mostly vanilla but there are a few other flavors, chocolate is the only one I've tried and It is awesome with banana, peanut butter and milk. My friend has been staying with us this week and we've been modifying our recipes to be gluten free. It hasn't been hard to do and the food tastes great. She put herself on the... [ more ]
VHDan Thanks for the advice so far! Suebear: I'll definitely look into quinoa and amaranth; I'd heard of quinoa, but hadn't taken the time to try it yet. I have canned pears in my fridge, waiting to be tried; I've had them in the past, and definitely had a better time than with raw produce. Soup is normally okay, but I'm basically obsessed with being able to somehow "bite into" the food I eat, especially at dinner, so they're always a hard sell for me, haha; this might have to do with all those... [ more ]
See all 6 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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