Will Perone

The drugs and supplements I used to take when I had ulcerative colitis I had severe ulcerative colitis for 3 years while in college. During that time (2002-2004) I was a patient of 6 GI specialists, was hospitalized over 12 times and tried almost everything known to medical science and holistic practices at the time. I ended up getting a total colectomy and now I have a J-pouch. I'm sharing information on what helped me and what didn't so that others can avoid some ridiculous expenses and mistakes and hopefully have a better shot at keeping their large intestine than I did.


Ulcerative Colitis was the most difficult challenge I have ever faced in life. The most important thing of all for me was to keep a positive mindset and to never give up no matter what. Although I felt very alone with the illness I had some great friends and a fantastic mom who tried their best to help me out. Now it is my turn to help out as best I can with this web page. I hope you find the information in my colitis pages useful and I wish you the best of luck in your own journey.

My Colitis Information

Ulcerative Colitis
Ileostomy
J-Pouch

Colitis Research

23andMe is looking for volunteers for a groundbreaking UC study. View the flyer. You can email them at ibd@23andme.com.
Genetics are now believed to be somewhere less than 60% role in developing UC. Known genes include HLA-DRA, BSN, NKX2-3, IL23R. I have positive markers for 3 of those genes. More conprehensive results on the genes involved can be found PharmGKB and the National Human Genome Research Institute. You can have your full genetic profile done at 23andMe
A June 2009 study showed a 3 fold risk increase for IBD after Campylobacter or Salmonella Infection. Note: I began showing symptoms of UC right after a salmonella outbreak and recall on beef at Fred Meyer where I shopped.
Frankincense (boswellia) is currently being researched for it's restorative effects for UC.

Colitis Links

Mark's Battle with UC and J-Pouch surgery
Number Twos UC Blog - A Blog from a fellow UC sufferer
Colitis Foundation
Healing Well UC Forums
CCFA - Chrons and Colitis Foundation
Traveler's guide to toilets
The CCFA LinkedIn Group

Helpful Books

Patient Heal Thyself
Why Zebras Don't Get Ulcers
Prescription for Nutritional Healing

Support Group

I am starting an Ulcerative Colitis/Ileostomy/J-pouch support group for the San Francisco Bay area. If you are interested, please email me at colitis@willperone.net

85 Comments
HT 4 0
I'm really glad that you're doing better. I hope it continues to become easier for you! Best of luck and thanks for the website!
Daniela 4 3
I'm really proud of you. You are just amazing :)
Barbara 2 0
I'm so glad you're here!
adrienna 5 0
i got UC when i gave up smoking
ERIC 2 0
glad to see your doing good now man
Jan 5 0
You are an inspiration. Thank you so much for your generosity in sharing. My UC is very mild but it is good to know which foods to avoid. One food to avoid surprised me: apple. This is because, when I was most ill with UC, I read that apple soothes the gut and I lived on stewed apple for a while. It seemed to really help, as did having acupuncture. (I would recommend definitely).
Richa 0 0
Your website is good.Thanks for sharing.I have moderate UC and Apple juice has always been on my food to eat list.I can tolerate it even during Flare-ups.Rice milk is good at all times.Turmeric,Oregano,Parseley,Basil are spices good for UC.Whereas Watermelon,Oat,Pineapple juice and hard cheese causes discomfort to me.Meditation helps a lot.TC
marg 0 0
your site was very helpful i was just told i has uc and wondered what to eat . thank you for posting the information on this site keep up the good work
Bryan 0 0
Glad you are doing better and thanks so much for the information on your website. I was diagnosed with moderate UC about a year ago and I found your site to be useful. Take care.
Jared (http://hpalace.com) 0 0
Was just browsing around at work. Looks like your UC page has helped out LOTS of people. Great job, dude!
Chris 0 1
I was recently diagnosed and I've found your website to very helpful. Thanks so much for sharing.
Ann Marie 0 0
I have crohns which is related to UC. I had a long expensive search in order to find what was good for me but now I feel good most of the time. It changed my life but ZI think for the better in hinsight! Glad to hear you are doing well and happy!
Nadine 0 0
Hi!My daughter is 12yrs old and has UC.She is being treated at Sick Kids in Toronto.Right now they suggested Remicade and she is on Prednisone to stop this recent 'flare up'.Any suggestions?e-mail me at nadine_marsura@yahoo.ca.Cheers to you and your strength!
Kristen 6 2
Yeah, I'm confused as to why the apple juice is listed as something to avoid... other than that, thank you for compiling this list, I need it!
Mark 0 0
Will, so glad you are back to living a good life with your jpouch. I've got my jpouch and happy. Do you mind if I link to your site: http://ucstory.wordpress.com
kevin.eb 1 0
As you know i dont have need to say anything about you.You are the best.


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kevin

Find the latest news about Colon Cancer, Irritable Bowel Syndrome and Colitis. Discuss Colon related issues with members of the Colon Health Community.


<a href="http://www.coloncancer.bz">Colon Cancer News & Discussion Forum</a>
Saurabh 0 0
I think that you are doing a great job to make this site. This site is very easy and useful for all. I hope you made really such that things that you done.......

---------
Saurabh
Alexwebmaster 0 0
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I would like to share with you a link to your site
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Jessica 0 0
Thanks for the info. My daughter was diagnosed earlier this year (2009) with severe UC. It has been a challenge. Thanks for the advice! Take care.
mezy 0 0
hi there - I've had UC for about 10 years now and currently suffering a bad flare up. I'm afraid I'll have to go back on prednisone (imuran is not working for me).

I think everyone's food intolerances will be different - eg I can't touch any red meats, anything fatty & too tough too digest. Onion & similar veggies I am basically allergic too. Very bad. Re: apple - generally it'll be the skin, it's too much fibre, that causes ppl troubles (as my nutriontist informed me).

Just wanted to say great site!
[mjpix.com]
Becky 2 0
I've found that guar gum and inulin (soluble fibers) mixed into a liquid really help me. So much that I don't have symptoms as long as I take it everyday, in the morning and at night.
Lou 0 0
Mark.
Thanks for sharing your story and for setting up a helpful forum. Sorry about all you've been through.
coffee bags 0 0
Excellent blog! I genuinely love how it' s easy on my eyes and also the details are well written. I am wondering how I could be notified whenever a new post has been made. I have subscribed to your rss feed which should do the trick! Have a nice day!
CL Jones 0 0
I keep baby wipes (Huggies) in both bathrooms. Cleanse after each BM and keep a towel handy to dry area. Helps with irritation.
Lori 2011/03/180 0
I had UC for 10 years. I found out I had it at age 16. Was in hospital at least 2 times a year. I also went through all different drugs and finally got a J Pouch. Now I feel much better but I so get the "runs" once in a while. One thing my doctor said when I hade UC is that being on prednisone for 10 years or more there is a great risk of getting Colon Cancer. What will they come up with next for people with UC.
2011/03/241 1
Hey everyone, I am very new to this website. I have suffered with Ulcerative Colitis for most of my Life. I have the J Pouch. Actually I believe the docter that invented The J Pouch works / worked @ The Cleveland Clinic (where I have all of my operations.) I have had 4 Major operations & still suffer with a mulitude of symptoms. Does anyone know of anything that can help push out the stool(s) so one does not have to strain & spend hours upon hours in the bathroom? ~ Thank You very much! ~ Marty in South Florida
Will 2011/03/24 Contact Me0 0
Usually people with the jpouch have the opposite problem. That is peculiar that you have to really push to go to the bathroom. Are you on any medications at the moment?
Marty 2011/03/240 0
Hi Will & everyone! ~ Not any medication for UC, only 2 other medication for other things.
Marty 2011/03/290 0
Hi,again Will & everyone, Will I contacted u but didn't get any reply to my email address. Initally when I go to the bathroom I don't have any problem getting out the initial evacution. It is the rest of it that I have to push & strain with. Ya see instead of going to the bathroom 5 to 8 times a day, I try to go 2 to 3 times a day for longer periods of time. This way I am not always in there & I can try to get more things done throughout the day. Although sometimes I end up being in the bathroom for an hour and half to 3 hours @ a time when I do that. So I am pushing out what is left after the intial fall out. Any recommendations from anyone would be apprecitated!
Will 2011/03/29 Contact Me0 0
Sorry you didn't get my response earlier. I think the email system got messed up. Hm, that is an interesting approach. I can't say I've tried doing that so I don't know. If you are spending up to 3 hours in the bathroom though, it might not be worth it just to reduce the number of times you go to the bathroom. For me I spend literally a couple minutes or less because it just all comes out though I do go 6 or 8 times a day.
Marty 2011/03/300 0
Well, that is why I was asking if anyone knew if there is anything that I could take to get the rest of it out while I am in the bathroom. When I tried the approach that u do Will, I spend @least a half to an hour in the bathroom each time. So it adds up a bit.
Will 2011/03/300 1
Someone just posted on the jpouch page that they drink some coffee before bed to get everything to come out. It's an interesting idea; not sure I would recommend coffee before bed but that might work during the day. Coffee is a natural laxative though it can cause problems with the jpouch, perhaps another laxative that is short term?
2011/03/310 0
I drink like one cup of coffee throughout the day. It is a medium size cup & I sip it throughout the day. ~ Thanxz for the ideas. The laxatives most probably will only help with the initial output.
Terry 2011/04/28 Contact Me0 0
Hi! I have found this site very helpful and although I have been reading the information here for some time, this is the first time I'v posted. I was wondering if anyone has any suggestions concerning protein or nutritional supplements such as Ensure or Boost for someone that is still having difficulty tolerating many meats. (Over a year out from jpouch surgery) I'd also be interested in any thoughts about daily use of Pepto. Thanks, any thoughts or suggestions are appreciated.
2011/08/080 0
Has anyone posted anything here recently? B/c I am still suffering with Colitis everyday. It's the same old same old every day. I was wondering if anyone had any New suggestions or advice. ~ Thanxz
Will 2011/08/080 0
I most updates and comments are in the ulcerative colitis and jpouch pages (http://willperone.net/colitis1.php) & (http://willperone.net/colitis3.php)
Joyce Gustin 2011/10/22 Contact Me0 0
i have had ultra colitis since 2007.got a bag on my side now have had 4 years dec 27th of this year.was promised to be reversed.first doctor says that i may die if he gives me the j pouch second doctor says i would have to wear a diaper the rest of my life.anyone please help what to do.they say my bottoms not healing yet they said i would be reversed.they want to make it perm.not giving me any other choice need advice please.
Will 2011/10/230 0
So you already have an ileostomy? Is any of the colon still intact or did they remove all of it? The surgery for the jpouch is pretty intense but I was able to make it through it in a pretty severe state at 85 lbs; of course at that time I was 24 so my ability to heal was higher than someone older. The whole point of the jpouch is so that you don't need to wear diapers, it recreates a pseudo large intestine from part of your small intestine so you don't have to keep running to the bathroom.
Marty 2011/11/120 0
I have had 4 Operations starting in 1998. I have a J-Pouch now for about eleven years or so. I had an ileostomy for about a year. I have a multitude of digestive symptoms with the J-Pouch. It isn't the greatest. I have good days & bad days. But much of my Life revolves around this illness. I have to be aware that a bathroom is nearby. I still get cramps, spasms & other things. Some people say that special diets help them. I know that many of those diets r very strict & one has to be very disciplined with it. I really don't know if I could handle a strict special diet. I could try to just east bland foods but that won't be that fun. Eating food is to be enjoyed not to be something that one has to fear. I sometimes do use diapers. I don't like to wear them however the alternative is worse. They have these pull up very comfortable diapers that one just slips on like shorts under your underwear & clothes. People really can't tell from the outside that one is wearing them. They aren't very expensive. With Colitis & Crohns disease there r a myriad of "nice" symptoms that one has to cope with. I am always trying to think of things that will help my quality of Life better. Which is very difficult @ times with a J-Pouch & no small instestine(s). Going to the bathroom multiple times a day isn't that fun & hinders ones quality of Life. I have tried different things over the years to make the quality of my Life better. Not that many things have helped. I have thought of getting my J-Pouch Re-reversed. I am not sure if I would want to do that. When one Lives without a Major body organ / part then Life can be very trying most of the time (& it is!) & we all know that the instestines & digestive system is a Major part of the body. I hoped that my words helped some of u. If u have any more questions for me then u can ask them. - Good Luck to everyone!
tutoringsg 2011/11/14 Contact Me0 0
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2011/11/150 0
I got my colostomy at 16 yrs old I am now 34. Had two kids with a reconstructuon, J pouch. Had two high risk pregnancies sepnt most time in the hospital. Still get pouchitis may now have Chrons looking for friends to talk to heather.wilbur@yahoo.com
Marty 2011/11/250 0
Has anyone tired the B.R.A.T. diet? It's a bland diet.
Nancy 2012/01/150 0

my UC is gotten so bad that I was not able to
tolerate any foods other than vegetables and
boil fish. any other foods would cause fatigue
brain fog and fever. my biggest worry on this
diet was lack of antioxidants that is abundant is
fruits which I could not consume due to
inflammation and diarrhea response I would get
from their high sugar content. I was able to
solve this problem by taking juice plus
supplement with provide 17 variety of fruits and
vegetables in a couple of capsules. all sugar
sodium water and most of the fibers are taken
out and what is left is all the antioxidant and
phytonutrition you get from 7 daily servings of
fruits and vegetables. I discovered this product
online at www.nutritiontogojuiceplus.com
Kim 2012/02/152 0
Hi everyone, I have had my entire colon removed, had the reverse surgery and have had some issues, but am doing alright. I am a very athletic person and was wondering if anyone can tell me why during any exercise I do I am fine, except running, everytime I run I feel gas pains and as soon as I get home its straight to the washroom and nothing but air and blood comes out??? I don't get it, I can cycle 180km in a day and be fine or swim a couple kilometers and be fine. Its just running????? If anyone has any explanation for this, I would love to understand it!

Thank you, and thanks to everyone who comments on this site, I think its fantastic that we all stick together and help eachother. We have all been through so much and its nice to know that when something isn't going just right, I can read your comments and feel like I'm not alone. Thanks muchly for that!
Will 2012/02/160 0
I think it's related to the amount of movement your abdomen experiences during running. It's jostled around a lot thus causing more output/gas. In a similar vein, when you roll around a lot in your sleep you will also have to go to the bathroom more often at night.
Caro 2012/03/300 0
Hi Everyone,
I have just discovered this site...very informative. I developed UC after the birth of my beautiful daughter 34 years ago. I still have an intact colon. After I decided to end my marriage 12 years ago my symptoms disappeared. My Dr at the time kept suggesting it was because of all the years of stress in my life. I take daily 2mg Pentasa Granules and this seems to keep me heathy. Best wishes to everyone, you are all so courageous.
Swati 2012/08/070 0
Hi evrybody, My brother's suffering from severe UC from 4 years, and since we are unaware of the exact diet plan, tend to take some sort of food and it triggers again.Could anybody please pass on a neat vegetarian diet plan,it would be of great help,
thank you.
Lamba 2012/09/10 Contact Me0 0
The Dr should have given you betetr instructions, and a prescription. Most people who have had a colonoscopy would agree that the preparation is the worst part, since during the procedure, patients are sedated or given "twilight sleep" so that they do not feel any pain or even remember the test. However, preparation is usually done at home, and it can be quite challenging.Why? The goal of colonoscopy prep is to eliminate all fecal matter from the colon so that the physician conducting the colonoscopy will have a clear view. There are several ways to achieve this, and some [doctors and patients will have their own methods that work best for them. There are, however, three main types of preparation: Golytely (also called Colyte, or Nulytely), phospho-soda, and sodium phosphate tablets (Osmo-Prep and Visicol).GolytelyThis preparation will require a prescription from the doctor.It consists of a gallon jug with a powder mix inside. The patient will fill the jug with water to make a drink out of the powder. The instructions are usually to drink one 8 oz glass of the mixture every 10 minutes until the entire gallon is finished or eliminations are clear. After the first few glasses, bowel evacuation (in the form of diarrhea) will begin. Before the gallon is finished, many people find that their evacuations are totally clear and all the waste material is gone from the colon.If eliminations do not become clear after the gallon is finished, an enema may be needed. Some people do experience nausea when drinking so much liquid, so the physician may prescribe an anti-nausea medication in case it is needed. Golytely now comes in several flavors to make it easier to drink.Phospho-sodaPhospho-soda is a powder that is available over the counter either by itself or as part of a kit that also includes a laxative and an enema or suppository. The physician performing the colonoscopy will give instructions on which type of kit to purchase.Three ounces of the Phospho-soda liquid is mixed with water, or if the physician allows, other clear liquids such as ginger ale. After drinking the Phospho-soda mixture, most patients are instructed to drink at least 3 glasses of another clear liquids. If part of a kit, the rest of the kit (laxative, enema, or suppository) will then be used according to doctor's instructions.This preparation usually results in a bowel movement anywhere from 30 minutes to 6 hours after it is taken. Phospho-soda is also available in flavors to make it more palatable.Most physicians will instruct patients to call their office if the preparation does not progress as expected (for example there is no bowel movement at all or the evacuations never becomes clear).Sodium phosphate (Osmo-Prep and Visicol)Sodium phosphate tablets are prescribed by the doctor doing the colonoscopy. There are two different brands, depending on which your doctor prescribes Visicol, a 40-tablet regimen, and Osmo-Prep, a 32-tablet regimen.In Visicol, 7 doses are taken in 15-minute intervals: 3 tablets are taken for 6 doses, and then 2 tablets are taken for 1 dose (20 tablets total). The next morning, 3 to 5 hours before the test, the same dosage is repeated (3 tablets for 6 doses, and then 2 tablets for 1 dose in 15-minute intervals for a total of 20 tablets).The prep begins to take effect about an hour after the first dosage of tablets is taken. A liquid diet is usually prescribed starting about 12 hours before starting the regimen. Potential side effects include bloating, nausea, vomiting, and abdominal pain.In Osmo-Prep (the newer form), the tablets are taken on the evening before and the morning of the colonoscopy. The evening before the test, 4 tablets are taken with 8 ounces of a clear liquid every 15 minutes for a total of 5 doses (20 tablets total). The next morning, about 3 to 5 hours before the test, another 3 doses of 4 tablets are taken at 15 minute intervals (12 tablets total).Tips for the prep: * To reduce any anal discomfort, use adult wet wipes or a water spray to clean off instead of toilet paper. * Keep plenty of clear liquids on hand to drink. Water gets boring and you need to stay hydrated. * Follow doctor's instructions. You wouldn't want to have to do the prep all over again because you didn't get it right the first time. * Be prepared to spend most of the day before your test on the toilet. Bring a book. * Call the doctor's office for help if you have any trouble or don't understand the prep instructions.
mike 2012/10/25 Contact Me0 0
I am having my take down surgery in 2 weeks after being on a bag for 12 months and being able to eat and drink whatever I like with no problems. I had colon cancer and ulcerative colitis so had no choice but to have my colon and rectum removed and I had a j pouch created at the same time. Due to my chemo I have had to wait this long before surgery was an option and after reading some of these comments I am now wondering is it a good idea to have this operation. Does anyone have any positive experiences about having a j pouch where they can live a normal life with no problems as my nurse was giving me the impression that after a few months everything should be ok for most people and I should be able to live a normal life, is anyone actually doing this?
Lori Steel 2012/10/270 0
My daughter has UC very severe. She had a total colectomy in 1999. They tried to reconnect for a J-pouch but it did not work. Now she has all these others issues of the disease. She gets severe leg lesions that she has to be hospitalized for and now becuase the DR's left a stump from her first surgery this is causing problems. She started to bleed again. They call this proctitis. She has not been able to have any kind of a life. They want to put her on humira but she seems to always have open sores. Anyone else having any of these problems? How do you cope and where do you turn for help?
Marty 2012/11/061 0
I have had 4 Major surgeries since 1998. I had a stoma / ilestomy for almost a year. Now after 4 operations I have a J Pouch, internal. I can only say from My own experience(s), that I still hava a multitude of physical symptoms. One can try the internal J Pouch for a while & say how it goes. However my quality of Life isn't that good. I keep losing weight. I have to constantly go to the bathroom & b/c of that I don't want to eat food. I have tried various things over the past 14 or so years. Nothing has really helped me. I know having an ileostomy isn't any great shakes either however it would most probaly eliminate many or most of my physical symptoms that I struggle with on a Daily basis. Maybe / ? , if one sticks to a very strick kind of diet it may help them but one has to be very disciplined with it & there are no guarentees that, that will help much with those nasty symptoms. ~ Good Luck to everyone with this "Fun" illness. ~ Marty
mike 2012/11/068 58
I have decided to go ahead and give it a try hopefully I will fair better. I will let you know how I am getting on in a month or so, wish me luck.
Marty 2012/11/070 0
Good Luck Mike, I hope everything goes good for u & u r well. I myself dislike very much being in the bathroom much of the time. It is a real drag & b/c of that my appetite for food suffers.
mike 2013/02/052 0
Sorry its took me so long to tell you my progress but I was hoping for better news. Its now almost 3 months since my operation and I am still going to the toilet around 15 times a day, sometimes 4 times an hour which is a real problem as I am now back at work full time as I can`t afford to stay home. I am taking up to 8 loperomide and 2 fybogel a day but nothing seems to have got better for at least a month now and I am wondering will it ever get better or is there something I should be doing to help it more. Any suggestions would be appreciated.
Will 2013/02/070 0
How much water or fluids are you drinking each day?
mike 2013/02/070 0
Hi Will, about 2 litres a day.
Marty 2013/02/080 0
Hi, About a month or so ago, I was in the Hospital for 9 or 10 days. I was very dehydrated and had multiple problems. I had the Flu, a fever, low Kidney level, other things and had to have two blood transfusions. I hate this illness. I curtail my eating.Other people don't want to be around someone with this terrible illness. ~ Just some of my experiences and thoughts. ~ Good Luck to everyone. We live it and know first hand how trying every single days this is.
akash 2013/08/010 0
hi, u r doing gud by helping people who r suffering with uc . I dnt knw y bt apple is nt helping me .. Can anyone tell me y apple seems bad fr me ..
teresa 2013/10/03 Contact Me0 0
Hi, have found this site very helpful. Lots of tips and tricks to help make life better. Everybody on here seems to have IF or GAP. I had colonectomy in Nov 2012 and reversal/j.pouch in April 2013. Reason for mine was 30+ polyps, too big to remove. They have tested me for GAP but negative on genetic blood tests. More tests to follow. Wondering if anybody else has the same. My experience of the pouch has been so much better than I expected. I am back at work full time and able to do fair amount of exercise, gardening Tec. Probably go to the loo about 6 times a day and usually make it through the night without having to get up. Main prob I have is gas and itching especially at night. Good to see everybody's experience. Some obviously more positive than others. Teresa (Norfolk, UK)
Jessi 2013/10/07 Contact Me0 0
Very proud of you Will! Great job!
Marty 2013/10/310 0
Tommorow, I am going to see the / my surgeon who did all four of my surgeries about 14 years ago to see if I can possibly have my J-Pouch Reversed. I have not seen him in many years. About 14 years or so. They are kind of far away from where I live now. I am very apprehensive about the entire thing. First I had a Ileostomy for about 9 months, then I have 4 surgeries & now I have a J-Pouch which I have had for almost 14 years & I am having many symptoms, like cramps, pain, losing weight & it Really sucks! Any advice, suggestions are appreciated! So wish my Luck. ~ I am very nervous. ~ Thank you all. ~ Marty W.
mike 2013/11/020 0
Hi Marty, really sorry to hear about your problems. I think you are doing the right thing to seek advice from your surgeon. I have had my take down done a year ago but am still going to the toilet up to 20 times a day and have no quality of life. I was also thinking of going back to having a bag but will try and hold out a little longer while my doctor tries a few more things. Hopefully your surgeon can either suggest something else that might help or book you back in for the reversal. When I had a bag for 12 months I still had to empty it frequently but it was when it suited me within reason and I could eat and drink anything I wanted without worring about having to dash to the toilet multiple times. All I can say is go and see him and tell him your story ansd see what he suggests. Good luck.
2013/11/020 0
Hi Mike, Thank you very much for replying so quickly & your concern. I wish the best for u too. What did your doctor try on you? My Surgeon gave me a rectal procedure & said that I have a bacterial infection. I guess Pouchitis. He prescribed me Cipro for 2 weeks. He said wait about 3 weeks or so & see what happens. He did not want to put the cart before the horse. I think he thought at first that I have a blockage. I really don't know; my sister in law was with me & she understood better what he was saying. Since, he did this procedure while I was there, I guess I may have missed out on that time to discuss other things. I can't even take going to the bathroom 2 or 3 times a day with the straining, pushing, blood, gas, mess, etc. I sucks. If I had an Ileostomy again. I would emptying it but would only be in the bathroom for 5 minutes each time, not 2 hours plus at a time. & I could eat almost anything. I would have to change the Pouch 2 to 3 times a week or so, also. This illness is also very embarrassing. So, as we All know it really sucks big time. Thank you everyone for your advice, suggestions & my Best to everyone here!
2013/11/030 0
Hi Marty, I am glad you are moving forward with your problem and I agree with you if things can`t be made any better I think the illeostomy is the only way to go to improve your quality of life, 14 years of suffering is more than long enough. My surgeon hasn`t tried very much really. He gave me a camera examination about 4 moths ago which he said showed no problems. He has changed my medication a couple of times which made no difference and now he has given up and referred me to another surgeon who I have seen once who has changed my meds again but they haven`t worked and I am waiting for another appointment to see what`s next. Like you if everything fails over the next 6-12months I will try to get a reversal to improve my life but it`s a last resort. Let me know how you get on and I will do the same. Mike.
Marty 2013/11/030 0
Hi Mike, I can relate to u. I only weigh about 105 lbs or so. I think that my surgeon may have given me a camera exam last Friday. I don't want to go through the run around like u r getting. I have been suffering most of my Life with this illness. I don't drive & need to rely on other people to help get me to places. & some of them r not that willing to do so. My surgeon didn't even give me any medication(s) for cramps. He said the Cipro / antibiotic would help with that. So, we shall see. It is very frustrating b/c most of the time it feels nothing we do works well with these illness'. & it is difficult to stay positive. Good Luck & I will try to stay in contact with u via / on this website or another way. I do sometimes have internet / computer problems also. ~ Feel Good! ~ Marty
Marty 2013/12/050 0
There hasn't been many comments lately on this page. I was just wondering if there r any new updates by anyone. I am trying to check this webpage atleast a few times a week. ~ Thanks & feel well everyone!
mike 2013/12/050 0
Hi Marty, nothing new to report really. I had another camera examination about 3 weeks ago and am still waiting for the results and I have my first appointment with the bowel clinic on the 17th of this month, hopefully they will come up with some answers. Will keep you posted if anything good comes of it. In case I don`t post again before christmas I hope everyone has a good christmas with minimum visits. Mike.
Marty 2013/12/060 0
Hi Mike, Well, I hope that goes well for u. I will probably have to go back to the surgeon. I am still getting cramps. I am trying not to eat anything after 7:30 at night, but sometimes I get hungry. My energy level isn't very high & I have much cramping & pain while sleeping. ~ Good Luck to everyone b/c God knows we need it. ~ Have a good Holiday season to eveyone, if there aren't any new posts. ~ Marty
Marty 2013/12/160 0
Hi Mike & everyone, I am going back to the doctors soon & I really Need & Hope to get some much needed relief from this. ~ Thanks
tommy d 2014/03/03 Contact Me0 0
ive had my j-pouch for 17 months. i cant eat a thing and strain to empty all day long. i was diagnosed with small intestinal bacterial overgrowth and given xifaxan and lactulose but both are killing me with side effects so im basically going untreated. i feel trapped in a world of hell. id rather have colitis and my colon back. any thoughts or suggestions are welcome.
Will 2014/03/030 0
Tommy, should should be taking probiotics to restore the bacterial balance in your gut. Try taking VSL #3.
tommy d 2014/03/03 Contact Me0 0
mike 2014/03/030 0
Hi Tommy, sorry to hear you are having such a bad time. It has been just over a year since my take down and like you I have struggled sometimes going 20 times a day. I am the opposite to you and go too much, I take 10 lomperimide a day and 3 sachets of fybogel to slow things down and thicken it up but still go 10 plus times a day. I have found diet to be helpful eating plenty of toast etc to bung me up. I have also been given and this may help you a kit to flush out my pouch. Basically you fill the plastic bulb with warm water and insert it up your behind and squeeze the bulb to fill your pouch with water. Then usually in a few seconds your opuch just suddenly pushes out the water along with everything else. You can do this several times until you feel empty and do it several more times throught the day depending on where you are. I am not saying this is the answer but ask your doctor to see if he thinks it will help you and good luck. Failing everything else can you not have a bag instead, there are times when I think if things don`t improve I may have the operation to have the bag back.
Teresa 2014/03/04 Contact Me0 0
Sorry that everybody seems to be having so many problems. My experience of jpouch has been really positive. Nearly a year since my take down operation and really life is ok. Do go to the loo a far bit but I am able to hold on. Have to be a bit careful about food and suffer after one of my husband's spicy curries. But I am back at work full time now and gradually getting energy levels back. Just thought people might like to hear a positive story. Best of luck everyone.
2014/03/120 0
Hi Teresa, glad things are working out for you its great to hear success stories. Could I ask a favour and ask you about your diet, what can you eat that you are okay with and what you avoid. Could you do a quick list of each to help us all out, say breakfast, lunch and dinner. Cheers.
teresa 2014/03/26 Contact Me0 0
Hi, for breakfast I usually have porridge.
For lunch cheese sandwich, banana, crisps.
For dinner I eat most things, pasta, chicken, potatoes, root vegetables.
If I eat spicy things I usually know about it.
Did have a bit of an issue with beetroot but I find some times things upset me and then I try them again and it is ok.
I usually have a couple of slices of toast and marmite before bed.
I find I am hungry most of the time and have been piling on the pounds.
Also eat quite a few avacardos.
Citrus fruit also upset me.
Sounds like I am lucky compared with lots of people posting on the site.
Maybe because I don't have uc.
Hope above helps.
2014/03/260 0
Thanks Teresa for sharing,

I will try some of these.
joyce gustin 2014/07/31 Contact Me0 0
I HAVE HAD MY LARGE INTESTINES REMOVED AND STILL MY RECTUM IS BLEEDING OFF AND ON AND PUSHESOUT OF NO WHERE .IT ICHES AND BURNS HURTS I SEE MY DOCTOR NEXT WEEK.I HAVE A HERNIA IN MY TUMMY FOR THE SECOND TIME .THE DOCTORS WHO LOOKED AT ME SAID MY SMALL BOWEL IS WRAPPED AROUND MY STOMA WHEN I EAT IT FIRST LETS ALL MY WATER OUT.THEN MY FOOD .SOMETIMES MY LEFT SIDE HURTS I IN UP LIKE A PREZEL AND GET ILL AND THROW UP.I HAVE GAINED ALOT OF WEIGHT .FIRSTWEIGHTED 120 THEN IM NOW 195 IM VERY DEPRESSSED BUT STONG AND ABLE TO DEAL .JUST NOT CERTAIN IF I GAINED BECAUSE MY FOOD TAKES UNTIL THE NEXT DAY TO EXPOSE ITS SELF I EAT SMALL AMOUNTS SOME TIMES LARGE .STILL IF I EAT EARLY MORNING I DO NOT GO UNTIL THE NEXT DAY MEANIG WHAT EVER I ATE THAT MORNING EVEN EATING ALL DAY AND WASTE COMMING OUT ,I STILL GO NOT GO UNTIL THE NEXT MORNING I HAVE A BAG.IM VERY FRUSTRADED HELP PLEASE JOYCE GUSTIN
teresa 2014/08/02 Contact Me0 0
Sorry to hear your experience has not been good. How long since your operation? Hopefully things will improve slowly. Try and keep strong. X
Johnk812 2014/09/01 Contact Me0 0
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Will 2014/09/01 Contact Me0 0
John, contact me via the link next to my name with the details.
Will 2014/09/010 0
Joyce, how are you doing? Is the bleeding still persisting? It's normal after the operation for a bit. That is very much not normal that it takes a day for it to go through the stoma.

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