J-Pouch ForumsGeneral Discussion
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J-Pouch ForumsGeneral Discussion
It has been long accepted that there are a number of triggers for that first UC flare. But, you also need to be genetically susceptible. Jan [ more ]
I believe without much doubt that my quitting smoking was my "trigger". All was fine before that and soon after I quit all hell broke loose. UC runs in my family as well so I have the freaky gene I guess. [ more ]
Yes, According to several articles I've read, there are theories that for those of us with IBD, a genetic predisposition exists, and then an environmental trigger "turns on" the autoimmune response, resulting in a flare. I wasn't a typical case either. I developed acute UC at age 26, shortly after picking up a very bad cold on a trip out west. Within a week of getting sick, I was having persistent loose stools, then noticed blood within a few days. Prior to that, I had never had any... [ more ]
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J-Pouch ForumsGeneral Discussion
I don't post here very often but I do a lot of reading and this thread was very informative so I will add to it. My autoimmune list is not that long but longer then I would like: Type 1 diabetic almost 41 years Colitis dx 2003, J-pouch surgery 3 stage starting in 2003 and the final in 2008. I have been having a continuos battle with pouchitis and within the last year I have been dealing with muscle and joint pain and fatigue. I have been diagnosed with sleep apena and have been on cpap for... [ more ]
Here's an updated link to the one posted above: http://www.spondylitis.org/Lea...teropathic-Arthritis [ more ]
I agree with you ElmerFudd. I'm tried of all the specialists as your mom says, one for every body part almost! I've had some, I don't want to call it luck, whole person analysis at Mayo lately. I've been seen by 3 different departments and they like to tie everything together, along with my other parts that are taken care of locally It is better to see how afflictions/diseases/syndromes/pain are related to each other. Net result is I'm now taking one medication to take the place of 2 and it... [ more ]
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J-Pouch ForumsGeneral Discussion
Hello, Sonny. If you have soreness or are nervous in any way about the pouchoscopy, let them know a few days in advance you need to be sedated so they can be prepared for you. If you are awake, you might tense up your muscles back there and that will make it difficult and painful to put the scope camera in. Each doctor has their preference, but your doctor might ask you to stop eating 12 hours before your procedure, and to empty your pouch before your procedure so they have a clear view of... [ more ]
I have FAP and always get an upper and lower scope exam during the same appointment. Since the anesthetic used affects your memory for a short time after the exam is done, I suggest that you give your doctor a short list of questions concerning her findings. You will feel fine after the exam. My GI has no problem writing brief responses. Regular scope exams are a MUST with FAP due to the nature of the disease. [ more ]
I go to work after a pouchoscopy. That only makes sense if you skip the sedation. Opinions are mixed here about sedation for pouchoscopy, but treating perianal abscesses might need sedation. [ more ]
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J-Pouch ForumsGeneral Discussion
I'm sure the authors of the book think it is legitimate, however as far as I am aware and I'm sure health professionals will agree, IBD, Crohn, Colitis etc cannot be "reversed" through diet, hypnosis, yoga, meditation, past life regression etc etc. Whatever you choose to do regarding reading this book, please do not stop taking prescribed medication unless advised by the prescribing physician. [ more ]
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J-Pouch ForumsHelp! Need advice now!
PSH, I feel your pain and can understand how you feel with all the uncertainty and doctors throwing words like "crohns" around. It's been a few months since your post, I'm not on the forums often, however I hope you are ok and are closer to a definitive diagnosis. May I also comment that I was impressed by your dignity and calmness when replying to a post from another member who did not appear to show you any empathy and seemed extremely dogmatic in their reply! I felt aggrieved for you just... [ more ]
Knowing that background certainly makes your feelings understandable. I had read your post as suggesting that it was the Crohn's diagnosis or possible diagnosis that had you freaking out, which led to my reply. In my years on this board I have seen an inordinate number of "I have Crohn's and The Sky Is Falling" posts, which honestly do not make much sense because they focus on a diagnosis that very likely cannot be confirmed and isn't necessarily accurate anyway, based on current medical... [ more ]
CT. Relative to your statements of getting treated, you're right on all counts. That's actually the plan. I think it's probably also important to remember though that folks sometimes just need to get frustration and or fear of the unknown off their chest. Yes, much more than Chron's was discussed as possibilities, pouchitis, restricted blood flow, backwash, etc. but to have my G.I., notably a renowned professor of gastroenterology at Emory leaning that direction, but admitting we'd have to... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hey guys. Thanks for your replies. I ended up heading to the emergency room on Friday night and got admitted. After a scope, it turned out to be bad stomach flu that caused pouchitis (ouch). So they're starting me on an antibiotic that will hopefully rid my pouch of that nasty inflammation and get me able to drink water and get home ���� [ more ]
Does sound like gallbladder. Have you noticed it happens more if you ear fatty or fried food? [ more ]
The most common causes of the symptoms you describe are gastritis with or without ulcer or gallbladder troubles. That said, I would have sworn I had a hot gallbladder, with all my adominal pain and cramping after every meal. There was also a lot of gas and diarrhea. Turns out I just had severe pouchitis. Go figure... Jan [ more ]
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J-Pouch ForumsPouchitis
Hi Francois Thank you for your message and best wishes. There are a few side effects, like irritation, nausea, but as I can see nothing major, so fingers crossed. This coming Friday is D-Day when I'll know whether I'll be taking part or not and I was told that if I do and the treatment is successful they will keep me on it. I'll keep you posted with what happens and I hope I don't get the placebo ! I was on antibiotics for my pouchitis which really did work. Take care Marty [ more ]
Hi Marty. Got my J-pouch surgery back in 2008 and have been having chronic pouchitis for years now, sometimes without severe symptoms and sometimes with. VLS3 has not protected me, it seems. I am living close to Paris (France) and here my gastro thinks it may take a while before Alicaforsen becomes available. Still, I am really interested in what it will do for you. Who knows, I might be able to buy and import some from other countries. Did they mention any potential side effects to you ? [ more ]
I'm about to start a clinical trial for chronic pouchitis with alicaforsen enema. This is for people who are dependent on anti-biopics to control pouchitis. The trial involves stopping antibiotics for 2 weeks and then being screened and then using an enema every night for 6 weeks while being in close contact with the medical team. If the treatment is successful the enemas only need to be administered every 2-3 months or so. This would do away with the use of antibiotics, so fingers crossed. [ more ]
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J-Pouch ForumsGeneral Discussion
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Dr. Belitsos could probably suggest someone at Hopkins. Call his office? [ more ]
That's who my husband has seen for routine colonoscopies over the years. I started with John Covington in 1997. He's great and I really like him, but think I need someone who has more knowledge of Jpouches. I'll be making some phone calls. Thanks again. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Oh surgeon at Weill cornell is Dr Shulka. We use him. Wonderful bed side manner snd the kindest doctor ive ever met. And he's a surgeon! Also Dr Milsome, who studied under Dr Remzi is also there. He works with Dr Shulka a lot. Milsome does not take insurance so dr shulka brings him in when dr shulka is dojng stuff on my son. [ more ]
NYU is starting a great gastro program. Our GI left Weill Cornell to go there and now Dr Ramzi is going there. brian Bosworth is excellant. I believe he is the head of Gastro. If you go to the website as look up gastro, read their bios. We have to find a new one at Cornell because Dr Bosworth left. [ more ]
Dr. Legnani - Saved my life Kornbluth Legnani & George Mds 1751 York Ave, New York, NY 10128 (212) 369-2490 [ more ]
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J-Pouch ForumsHelp! Need advice now!
Sounds like a bowel obstruction. I've been to the ER for them several times. They've always eventually cleared on their own. Deep breathing for relaxation helps me a lot because it relaxes the bowels during this period. [ more ]
It sounds like you had a small bowel obstruction that fortunately cleared up on its own. They are most commonly caused by the bowel twisting around post-operative adhesions. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Thanks I agree I'll start with the vitamin and exercise asap. How do I choose the right multivitamin? I have appointment this week and I'll request labs [ more ]
I don't think that there is a one size fits all cure but some general rules that can help. You need a really good multivitamin with essential minerals to support your whole system. Next, exercise works wonders on exhaustion and depression as well as on general joint and back pain. You need to have some blood work done...to see if you are anemic or suffering from any other deficiency. Anemia can lead to exhaustion, depression, insomnia, mood swings, aches and pains and even loss of cycle. By... [ more ]
THANKS JAN�� [ more ]
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J-Pouch ForumsGeneral Discussion
Sounds reasonable Scout. I didn't really understand how acupuncture would help as well. That being said, alternatives to western medicine can't be overlooked. My goal is to get off of prednisone totally, not have to use biologics anymore (which have all stopped working) and have more energy. So, has anyone had a positive response to acupuncture? [ more ]
I'm always a bit skeptical about things that are supposed to "boost the immune system." For one thing, I have no idea what it means, and neither do the folks recommending it. For another thing, if it actually did boost the immune system, folks with IBD might get worse, since it seems like our immune systems are already much too boosted. I've tried acupuncture on and off, for various purposes, and it didn't do much for me. If I believed it were going to boost my immune system I'd stay the... [ more ]
I have no clue how acupuncture can help overcome the difficulties anybody experiences with a j pouch, there's just no overcoming the physics of a pouch by jabbing yourself with a needle. [ more ]
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J-Pouch ForumsGeneral Discussion
Anthony, I had the exact same issue. I had the area dialated under anesthesia (kind of like a colonoscopy procedure), It didn't hold as they thought it would. I ended up having a small bowel resection of the area. It did work and stopped my bleeding and issues at the time. Hope you have been able to get some relief and answers, Sharon [ more ]
There's no reason that this should threaten your pouch! You might well need your surgeon to do their thing, and that's a nuisance, of course. You should be fine. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
J pouch 2011 pouchitis since did all the antibiotics vsl 3 kangen water every diet went to NYU LANGONE 3 weeks ago for second opinion before committing to 6 mp or any other chemo based drug and was told about a study that was just starting in the US the drug is ALICAFORSEN it had a 58% success rate in studies in Europe the study is double blind and I started the med or placebo yesterday. The study is posted on the crohn's and colitis website . It is Worth a shot. The doctor at NYU LANGONE is... [ more ]
Nope. They're a one-shot deal, not reusable. So don't even need to go through the indignity of fishing it out. Just flush it. [ more ]
DanielR - Thank you! when they asked you to look out for it im guessing you need to retrieve it and send it back in? [ more ]
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J-Pouch ForumsGeneral Discussion
I am now belching more than ever, even when having a drink of tea/coffee/mint tea ! I am also bringing up food, and have been sick a number of times. Also I am feeling bloated after most meals. My ultrascan is next week, so at least more will be revealed. Strange phone call tonight ! Around 6pm a lady rang me and asked if I was aware of my forthcoming ultrascan ! She wouldn't tell me where she was telephoning me from and never gave me her name ! Yet she knew mine ! She was pleasant enough... [ more ]
Wes, I have noticed how it refuses to be flushed ! It can take three flushes before its all clear. I will try the enzymes as I was looking into that a few months ago in relation to my wife's illness - Fibromyalgia, H Pylori and IBS !!! Until next time Wes, I wish you the very best of health ! Namaste, Lenny [ more ]
Billy, I appreciate your response. Pancreatic problems are very painful and I really feel for you Billy, even though it was back in 1992. My brief research has revealed how painful it is. I can't remember where it is Billy, but I will have that information in a few weeks. I am still waiting for my upper side scope ! I have noticed how poor the communication can be between departments ! I was recently tested for sleep apnea, and await the results. I stop breathing when I lie on my back and I... [ more ]
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J-Pouch ForumsWomen's Health & Pregnancy
Hi Megan i went through the same struggles. My husband and I tried getting pregnant for about a year when I said something to my gyno then it was all over. Tests on end which lead to another surgery but this time A right salpingectomy. Here we were excited at trying to conceive only to be shocked to hear I had a hydrosalpinx on my right tube and it needed to be removed. After that I started with the fertility treatments with 1 tube and much less hope. The left fallopian tube is covered in... [ more ]
Thanks Sharon, We are going on a mini road trip tomorrow and I am starting to think about how hard these things might be to do in the future. I might even have a few glasses of wine along the way [ more ]
Ok girls, you sound like you are on a good track. Take that second honeymoon, have some fun, go camping or hiking or for a weekend to the country...enjoy life pre-babies and work on getting healthy and strong... Sharon [ more ]
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J-Pouch ForumsGeneral Discussion
I have had scopes at all times of day including early evening and never had a problem. They require an empty pouch but that does not mean that you can't have some sips of water at 6 am...I have even had major pouch surgery at 3 pm and they allowed me water until 9am. They respect a 6 hour window for fluids. Sharon [ more ]
Noted, thank you all. havent had a scope in the afternoon like this before so i was a bit shocked. I'm not terribly worried about becoming dehydrated because it seems such a short amt of time to become that bad off plus i know ill end up getting IV fluid before and during. [ more ]
I did a 2:30 p.m. scope in June, fasting after lunch the day before and the day of. I did take some sips of water the day of with my Doc's knowledge and permission. Food the day of is an absolute no. [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Scott, I have not been recently tested for C-diff. I had it 2x before the colectomy in 2006. I will bring that up to the doc. Thanks! [ more ]
Thanks for the input. The Gyn says the cyst is not my problem and is adamant that it's a GI issue. So frustrating. I have gone to so many GI docs and always end up back with the colorectal surgeon who delivered my micropremie (another long story). He graciously agrees to follow me and has watched me go through so many docs. Maybe his being out for surgery himself is a sign to find the Gastro doc like you said. I hadn't thought of seeing an endocrine doc. My son sees one monthly and that... [ more ]
Sharon, how old ate you? Could be peri memopausal symptoms. I also have only one overy. Lost the otherone due to a cyst and large tumor. Sounds like a hormone issue. Id see my GYN. Feel better, i know how painful those cysts are! [ more ]
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J-Pouch ForumsHelp! Need advice now!
Jan- I contacted my surgeon's PA after reading your response, and he was fine with putting me on Imodium after hearing that I was going ~20 times a day. Luckily I'm fing much better now (3 weeks out) going 8 or 9 times a day. Much more manageable to say the least! Winterberry- wow, thank you so much for the thoughtful and detailed reply! I am doing much better now than I was doing a week ago. I hope to eventually get down to 5 or 6 times a day like you. I am a college student, and I believe... [ more ]
Hi, EKF. My reversal was in April. It will get better for you. Don't lose hope or be too discouraged. You are very early stage. My first two weeks with my j pouch went well with solid, formed stool, four times a day. I thought, wow, this is great, this is how it will be. Then I developed pouchitis three weeks in. Cipro, then flagyl helped. Like you, I spent most of my time in the bathroom or feeling I had to go every 10 minutes. Sometimes 15 times a day. Frustrating, depressing, worrying. I... [ more ]
I guess that is an opinion that varies. My doc had me on Metamucil and Imodium before hospital discharge. But that was 21 years ago. Perhaps opinions have changed. That said, I bet his opinion would be different if HE was the one going 20 times a day! Seems pretty intolerable to me. Jan [ more ]
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J-Pouch ForumsGeneral Discussion
I personally have never tried the liquid form, but I am looking to try something different since lately the pill form of Imodium is giving me horrible gas after it wears off. Imodium pills have always worked great for me for a few hours, but then the cramps afterwards are unbearable, so I need to try something else. I have a GI Dr appt in a couple weeks and this is one of the things I'm going to bring up. [ more ]
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J-Pouch ForumsGeneral Discussion
I have to agree I purchased a bidet on Amazon for $40 and it's awesome but it also spoils you because when your not home you don't want to use a public restroom not because its public because there's no bidet lol ... And barrier creams are less used when you own a bidet [ more ]
Get a bidet toilet seat!!! I use almost NO creams, wipes, etc anymore (except when I travel) and almost never have butt burn anymore. The bidet changed my life for the better X 5!!! [ more ]
I use a travel bidet to control butt burn, and it has helped 100%. I bought it before my reversal surgery after reading on this site about butt burn. It's a purple coloured plastic bottle with special angled nozzle. It's cheapest to buy from Amazon.com or Amazon.ca depending where you live. It's approximately $14 and if you buy other things that you might need such as barrier cream or baby wipes, you can have the whole lot sent free delivery. I could not have survived the butt burn without... [ more ]
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J-Pouch ForumsGeneral Discussion
I don't frequent the surveys. Can anyone answer Temoty's questions? Jan [ more ]
thanks, I can see the results in graph form, but how do I view the written in responses? On my survey, people are allowed to write in answers. How do I view those? thanks! [ more ]
It works fine now. Thanks Jan & Bill. [ more ]
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J-Pouch ForumsHelp! Need advice now!
I agree. Some people are very sensitive to the effects of Imodium. Jan [ more ]
Hey Dunninator (thanks for your reply to my post a few days ago!) I guess because you took the Imodium and now things have slowed down a little too much that it might just be that and not a blockage, unless what is coming out is just water and the Imodium is a coincidence. Maybe have a warm bath and massage your belly and that might get things going. Hope you feel better soon [ more ]
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J-Pouch ForumsHelp! Need advice now!
Hi, Mamaswans. I use a Brondell bidet. Its a squirt bottle. It has an angled nozzle that lets the stream of water clean the right areas. And you control the temperature of the water, hot or cool. it is very easy and comfortable to use. It has an air-lock button on the bottom so that water always comes out no matter what angle you hold the bottle, upside down, sideways. It is available in specialty stores, but costs less on Amazon, around $14. I have seen them for $30. I started using this... [ more ]
Regarding keeping the bottom clean... I've found saline wound wash spray that is great. I take it with me when I'm out, spraying it on tp and it helps it feel less like sandpaper. At home too, but spray straight on the area. It is a bit expensive, though. I've been trying to think of a solution. A conventional squirt bottle doesn't hit the right angle and a spray bottle is either too misty or too sharp a stream... [ more ]
Sharon, Seeing the words it will get better give me such motivation and positive thoughts about the future with this crazy disease/procedure that we have all had done. Thank you Infact today was exactly 2wks and a day since I was released. I am actually feeling half way normal. I haven't taken oxycodone in 24 plus hours and had 3 square meals. The fissures and hemorrhoid actually feel like they may be healing. Not sure if it has anything to do with it but I began soaking in the tub 3 or 4... [ more ]
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J-Pouch ForumsHelp! Need advice now!
CLWAKLEY: I do use sitz baths. They are effective for the moment and relax me right before bed. I do not have a bidet. And I haven't found any wipes that are flushable and safe for a septic tank. Have you? The Flexeril at bedtime helps the spasms that are apparently causing the fissures for about the first 2 hours of bedtime. Then I'm right back up. Sunday night was heaven - slept in my adjustable bed in recliner position - got a full 5 hours without interruption! But last night back to up... [ more ]
Have you tried sits baths? I use those and the ilex paste. I just fill my bowl that comes in the sits bath with water as warm as I can stand it and sit there reading until the water cools. Then an application of ilex paste keeps any further bowel movement from touching the area. I use wipes and a bidet also. [ more ]
I used Calmospetine for some time but it is so stiff and sticky, it's hard to get off and it feels gunky. I use Benefiber and lomotil or Immodium. Meanwhile... The BLT cream has numbed the area around the fissure, but the fissure itself is inside, it is still excruciating! So hoping the Flexeril helps enough that I can sleep... Just hope it doesn't relax me into an accident! [ more ]
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J-Pouch ForumsGeneral Discussion
Increased frequency, looser stool, intestinal/pouch cramping, bloated more than usual, and tenesmus [ more ]
Exactly what are symptoms of pouchitis? I'm going through a few rough days after indulging a bit too much with Moscow Mules and I'm wondering if this is the aftermath..., thx for any info [ more ]
Thank you Scott for your input and sorry about the confusion. I was asking about Oregano interactions. I've been taking oil of oregano to replace Cipro. [ more ]
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J-Pouch ForumsGeneral Discussion
thanks guys for the advice and thanks for such a swift response, i've seen my stoma nurse today and ive got a level 3 support belt and hollister straps from commfizz im also looking into the stoma belt that goes 360 degrees round the stoma so thanks for all the info [ more ]
There is a company called Nu-Hope Laboratories. They make ostomy belts that are wider than the usual thin, stringy 1 inch wide belts that cut into you, or ride up on your stomach. The Nu-Hope belt has a special ring that hugs and holds the flange / wafer in a 360 direction, not just on two tiny points on the side. The 360 hold allows you to feel your bag is on securely. You send them your waist measurements taken standing up, lying down, and they send you the belt. There is also... [ more ]
Comfizz also sells a range of waistbands. If, like myself and you're in the UK; Stoma support wear from Comfizz is another product available on prescription via the UK's fabulous NHS. [ more ]
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J-Pouch ForumsHelp! Need advice now!
Maria, I don't know where you are being treated but I believe going back to the stoma is the best bet. And give it at least 9 months to a year. Do they know where your leak is? That was part of our problem. They knew it was there, but did t know where. Turned out it was in the back of the small intestine at the sticking line. Asamatosis? That means the connection. It was difficult to locate, took a long time. I don't remember all the tests that were done.. But there were a lot. Good luck, I... [ more ]
Hi Jeffsmom, Thank you so much for your reply. I'm so sorry to hear his fistula and abscess are back after all he has gone through. There are no easy answers for us are there? I guess I will have to go ahead with the stoma and hope that the fistula closes and doesn't recur. I'm not sure what else to do. Thanks, Maria [ more ]
Maria, my son has had the same thing for the last 2 years. In January 2014 they discovered it. Put in a drain, but him on TPN for 8'weeks. Didn't work. In March of 15 he went back to an Ostomy. Shortly after that, he was diagnosed wi PSC so we had to change doctors. We moved over to Weill Cornell in NYC. New surgeon. He did lots of studies to see if the fistulia and abscess were going away. He did another drain. They did so much last summer. In the end, by November it appeared to have gone... [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
I find lying on one side and then the other moves the gas to freedom. I will on occassion actually pass gas confidently while standing up and that my friends is a victory , a triumph and cause for the greatest of celebration. Ah yes Mr. Stinky, you've escaped, you're free, fly with the wind and bless you for leaving. [ more ]
I find that laying on my left side only helps to pass gas and break up a small blockage. I don't know why on the left, but it has always been like that for me since my takedown it's all good���� [ more ]
I just remembered a humorous incident I had while still in the hospital after my takedown. My surgeon entered my room to find me in bed on my knees with my butt up in the air. He asked what I was doing and I explained very simply that I was taking advantage of gas rising! I've since learned I can lie down on my right side with my knees drawn up and get the same results. Fortunately, I have several choices to take advantage of! It is a journey of discovery! [ more ]
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J-Pouch ForumsGeneral Discussion
J-Pouch ForumsGeneral Discussion
Here is a site that my sister gave me for getting financial assistance or free Vsl 3 DS. NORD (national Organization for Rare Disorders. Their site is rarediseases.org. Go to Patient Assistance Programs. Then go to Medication Specific Assistance program for VSL #3DS. The phone number is 1-877-279-2459. The e-mail is vslds@rarediseases.org . At this time my surgeon suggested Align. I will be having my Takedown on Monday, August 8th. So I will see how things go from here. I will be registering... [ more ]
thanks [ more ]
However on another note the VA provided me free depends and free calmoseptine for all the accidents I have from night time mishaps. I am service connected with U.C. Otherwise I would have to pay. I found out they give nothing away unless you ask the right people sometimes over and over its the government after all. Good luck! [ more ]
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J-Pouch ForumsGeneral Discussion
As Scott says, this sounds like a fissure, and you will need to consult your doctor as it may require treatment. Of interest, skin tags can form as a result of a fissure, so perhaps this is what you are dealing with. If the skin tag itself seems irritated - perhaps from wiping or excoriation - you may want to apply a barrier cream after every BM, and/or switch to moist wipes/baby wipes instead of toilet paper until it heals up. Of note, I have an anal skin tag, which is fairly large. My... [ more ]
The knife-like description is how an anal fissure is often described. I'd get to the doctor for a proper diagnosis and (if indicated) a prescription for appropriate treatment. [ more ]
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J-Pouch ForumsGeneral Discussion
Another development...as of a few days ago I'm going to the loo a lot more just because the pressure gets so bad, and today it's been every hour! [ more ]
(Sorry my post cut off) ... A and e, really hope they can give a solution it's miserable like this for me and my kids xxxxx [ more ]
Thank you strange I think that's a good idea I'm going to look a group near me I think I really need it, I'm going to call my nurse tomorrow and probably just go in to a and ee [ more ]
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J-Pouch ForumsGeneral Discussion
When I use to drink heavy I made sure to wear depends because I often had accidents from being basically passed out. [ more ]
My main concern when I drink heavily is dehydration, not any issues with the pouch. I have had the Moscow Mule, it's fairly popular. I attended an informal law school reunion party a few weeks ago and got very drunk mixing Beefeater Gin and Tito's Vodka drinks. I did not have a designated driver so the host made me stay until I sobered up. I did get a little dehydrated. Many J Pouchers worry about the pouch when they drink but really your number 1 concern should be staying hydrated because... [ more ]
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J-Pouch ForumsGeneral Discussion
Hello all. My two cents. When I had a pouch my energy was depleted fast. Same thing when I had it removed. I was totally exhausted after an eight hour shift. About a month ago I let my surgeon know about it so she ran every blood test she could. It came back with the results that I had low iron levels. Wow. I had always had high iron levels. So I started taking a small amount of iron and Bada bing. My energy started coming back. And it's back just after a month of taking 64mg of iron a day. [ more ]
Yes, thanks for the tips! I don't usually get tired to the point of crying, but it has been known to happen and it is sometimes a source of stress with my husband since I think it is hard for him to relate to the idea that my energy can be so depleted that going out to a movie is just too much. I have been taking Omega3, D, a good multi and astragalas to try to help with the immunity. I am frustrated by it because it can make hanging out with kids hard. What sublingual B complex do you use? [ more ]
I eat fresh fruits and veggies every day. [ more ]
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J-Pouch ForumsGeneral Discussion
Hmmm, it sounds like you have decided to get the pouch, and I am so glad that you feel better after your first surgery! That is awesome. I was young and my parents and doctors sort of decided for me, but now I would say, I do really appreciate my j-pouch AND that they did not have the slightest clue about how the healing and adjustment process would go for me. I would say it took 10 years, easily. I never had accidents with my UC except for the times that I passed out from dehydration. Now I... [ more ]
You will find that sometimes you can do a lot of things and then that makes you think that you are to being superman...until you hurt yourself and realise that you are still healing...so even if...you think that it is fine, if you think that your are stronger than ever, if you think that you are bullet proof, you are not...you are still healing and that has its own timeline and does not send text messages to tell you when it is over... Sharon [ more ]
my Dr told me to listen to my body but to wait 6 months for strenuous activity I ran down a hill 3 months afterward and was fine... until I realized I had to get back up! Not so fun [ more ]
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J-Pouch ForumsOstomy & Skin
That's great info thanks! Hopefully it will pass. Not really too bad right now but still feel it. [ more ]
I get that occasionally. I've used just some Vaseline and a thin pad for protection. I have no idea what causes it, it's not particular to the summer heat. About a year ago, I actually had some sort of swelling there that was very painful. I made an appointment with my surgeon. Luckily, it popped the night before as it was a bit messy. He put me on an antibiotic although the tests came back inconclusive for infection. He said sometimes these things happen, that there can be a slight opening... [ more ]
Off topic I have itching 6 mos post op in rectal area after removal. No problems till now past 24hrs. Any suggestions for that?? [ more ]
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J-Pouch ForumsHelp! Need advice now!
I had never had a blockage before 2008...after nearly 30 years with a pouch...then they started picking up speed...firstly just post op ileus...when the gut doesn't wake up immediately...then I started getting return blockages in the same spot...sometimes total blockages where I couldn't keep a drop or ice chip down and others where it could sip water and juice until it passed...fortunately it always passed within 24 hrs. I have had surgery to remove the blockage ( it was a loop of bowel... [ more ]
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J-Pouch ForumsGeneral Discussion
You can also try Melatonin...it is available in health food stores and in any supplement section of a grocery store...it restores the natural sleep cycle...great for jet lag and when you get into a bad cycle of waking up at odd hours. By the way magnesium helps too. Sharon [ more ]
Thank you both for your replies, much appreciated. He is keen to try the non-drug route but the motion sickness medication is worth a try. Non addictive as well ... [ more ]
I loath the drug route and rarely suggest it to anyone for a lot of reasons. Firstly, some sleep meds can be habit forming and not necessarily addictive but your body convinces your brain that you cannot sleep without it and you become dependant, next, some can put you into such a deep snooze that you do not wake up in time to empty your pouch and end up sleeping in a mess. But, my favourite, non-addictive sleep aide that really does the trick and helps to prevent leakage is to take a... [ more ]
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J-Pouch ForumsGeneral Discussion
You will find some mixed opinions on probiotics. If you already have pouchitis, they most likely won't improve the situation, but there is some data that suggests they can prevent or delay pouchitis from developing. As Jan posted, the only probiotic that has really been studied in pouch patients is VSL#3. Align has been studied and has been clinically shown to reduce symptoms of IBS, but again, there really isn't much data on its impact on pouchitis. That said, I personally take Align. I do... [ more ]
Vsl#3 website offer discount card. [ more ]
The thing is about VSL#3 is that it is the only probiotic that had been studied in regard to pouchitis, so of course, it would be the only one showing efficacy. Even then, it does not treat pouchitis by itself and does not prevent it universally. Other probiotics may or may not be useful, but any evidence is just anecdotal. That said, this recent study I just found indicates that other probiotics may be beneficial as well: http://www.ncbi.nlm.nih.gov/m/...uchitis%20probiotics On the other... [ more ]
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J-Pouch ForumsHelp! Need advice now!
I'm very glad it worked for you, JJA! [ more ]
Big thanks to Scott F for alerting me to the Xifaxan loyalty card! My copay went from $35 to $150 this year for this drug. I signed up for the card and today paid $0 for my Rx!!! The card will only cover up to $1000/yr but since I alternate with another antibiotic, this Rx will cost me nothing for the rest of the year!!! If you have insurance coverage for Xifaxan but a high (well even a low, I guess!) copay, go to the manufactuurer's website to get this card! It is valid through the end of... [ more ]
I used it and had success. Have chronic Pouchitis and currently on Remicade too. Antibiotics don't work for me anymore so was given a course of Xifaxan since it doesn't get absorbed and stays in your system. So it works differently. good luck [ more ]
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J-Pouch ForumsGeneral Discussion
Sharon, it's surprising to me that Paris isn't pouch-friendly. When I was researching the possibility of a J-pouch for indeterminate colitis the two centers that had studied it were Mayo and a group in Paris. Mayo concluded that the pouch was a bad idea in that situation, and the Paris group came to the opposite conclusion. I thought the Paris group had done a better job analyzing their data, and on that basis went ahead with J-pouch surgery. [ more ]
Thanks, everyone, for your replies. I know there's always a real range of experiences with this particular health reality! Of course, since my recent crisis cleared up (with the help of a visit to Emerg for a fluid top-up), I haven't been thinking about it as much. But, I know I should try and put a long-term solution into place. To that end, I think I'll talk to my surgeon at our regular follow-up appointment this winter, and see what he thinks about the possibility of bringing a GI on... [ more ]
I've had my pouch for 37 yrs and rarely had a G.I follow me. (not always a good thing) My Surgeon did a great job on surgery and post-op follow up for the first 3 yrs (a one step ended up being a 3 step so we had plenty of time to see each other). Since then I moved to Europe and was hung out on a limb for years...no one knew what a k pouch was and even j pouches were not done where I lived so my only resource was a surgeon and a wonderful GP who was a naturopath too and did wonders with my... [ more ]
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J-Pouch ForumsHelp! Need advice now!
Yeah I was prescribed some dexilant for the gastritis and I suppose it's helping, very slowly though as the nausea did leave, although, I still have discomfort by my stomach area. I started taking carafate for all the gastritis ulcers etc and that also seems to soothe and coat things in that department. As for the pouchitis, I had missed two doses (not periodically) and well it seems as if the blood has been wanting to come back. It's very weird because this morning I had very very loose... [ more ]
The gastritis is probably the cause of the nausea. If he hasn't given your anything for the gastritis the you might try Zantac (150 mg twice a day). That should clear it up in a few weeks. Best to check with the Doctor first, if he'll return your calls. [ more ]
I'll ask my GI about why the canasa instead of antibiotic! He told me that the pouchitis wasn't bad at all and there are only some ulcers in there. It seems as if he is more concerned at the gastritis than the actual pouchitis. Things have not been easy these few days though because for some reason I always end up with loads of nausea at night. This is causing me to lose lots of sleep and makes it hard to keep the canasa in as it doesn't help me with the nausea! I had to go to the ER two... [ more ]
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J-Pouch ForumsGeneral Discussion
If I were in your position, I would get a comprehensive examination by doctors who are well-experienced in dealing with j pouch problems. Hopefully, they can find the cause of your problem and offer a solution. The Cleveland Clinic is very well known for this. Give your j pouch another chance to work out well before throwing in the towel. If you are not able to obtain the quality of life you desire with your j pouch, you could consider the k pouch or BCIR that do not require an external bag. [ more ]
Biggest problem was I couldn't ever get the Pouchitis under control. I think I went years with the symptoms and the only time it temporarily subsided was with Cipro / Flagyl. [ more ]
Rez, it kind of shuts down ideas when you write that you literally tried everything. You didn't actually try everything, of course, but I'm sure it seemed like it. In any case, more important than what you tried (though that would help), did you ever find out what was wrong? Maybe you needed a smarter GI. [ more ]
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J-Pouch ForumsGeneral Discussion
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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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