Ulcerative Colitis Tips


One of the 15,000 ulcerative colitis folks using the site adds:
"Like many UCers I have spent many hours trawling the internet googling the condition and came across your website a few years ago. I read your ebook and really liked your honesty and humour. As everyone says your positivity is so encouraging and now this is my go to website when I'm thinking about UC. Thankfully my symptoms are pretty much under control at the moment but just wanted to say thanks." Kate

Intl Stories

You can share your story by writing in the form below or by emailing ihaveuc@ihaveuc.com


Story #1 is from Kim who writes from the United Kingdom who answered a whole bunch of questions from the homepage:

Q:  How did you get diagnosed? Do others in your family have the same thing?

A: “Its taken 5 episodes last one lasting 8 weeks with no respite before finally getting results of biopsy which confirmed this. Worried about eldest son as he is starting to get sensitive stomach. My father had a very rare one kronkite-candida which took sometime to find and a while to sort out. Sadly he passed away last year nothing to do with that though”

Q: What was life like for you when after you were diagnosed? Did you see doctors afterwards, and what was the treatment plan? What type of medications have you tried, did they work? Any other thoughts you have feel free to put them down.

A: “pleased that there was a name for what I have so could find more about it rather than vagually terming it IBS sort of Just started medication so not able to say much yet”

Q: What has been the hardest part of your life with relation to your disease?

A: “The pain the lack of understanding and not being able to enjoy christmas dinner this year…”

Q: What else from your experience would you like to share with others who visit this site?

A: “keep going drive everyone mad until your happy with your treatment etc”

Kim and I later emailed a bit more and she just recently sent in this extra bit of information:

thanks for getting back to me.. No I have no problem you using my info on the site.
I think its a great idea and am glad to help in anyway.
As I mentioned only just found out suffering from UC the specialist put me on Asacol 3tabs 2x daily    prednisalone 5mg start at 6 per day for a week reducing by 1 tab per week until no tabs.  However these have caused great problems with sleep feel wide awake all the time but no energy not a good mix.  So was only only on them for 2 days and stopped  will go to drs tomorrow to discuss this problem.  However must have been toward the end of this attack anyway so the asacol seem to help a little. He also gave me liquid iron as so anemiac what a shock lol
Anway in a better place than last week when had no idea of what the problem was and of course  had no help.  Have put myself on omega 3,6 and 9 and starflower oil to help with the healing.
the next story is:
all the way from Boston-
Story #2 comes from Boston, MA  USA from Jen who has her own website, and has Crohn’s Disease which is similar to Ulcerative Colitis

Q:  How did you get diagnosed? Do others in your family have the same thing?

A:  I was diagnosed via colonoscopy in May of 2008. I have one great aunt with Crohn’s, one cousin with Celiac and a lot of other family members with undiagnosed health issues

Q:  What was life like for you when after you were diagnosed? Did you see doctors afterwards, and what was the treatment plan? What type of medications have you tried, did they work? Any other thoughts you have feel free to put them down.

A:  I followed the doctor’s treatment plan for the first year and a half. I was on Pentasa and Entocort to start, and then Imuran (Azathioprine). The first two meds made me miserable and the third caused my white blood cell count to drop too low. I’m currently med free and hoping to stay that way.

Q:  What has been the hardest part of your life with relation to your disease? What has been the best part? Have there been any strange things that have happened to you on the medical side, or any questions that have gone un-answered?

A:  The hardest part was finding a doctor that would listen and do the appropriate tests. It took me 15 years. The best part was taking control of my own health, doing research, learning about autoimmunity, learning about diet as it relates, and working hard to heal myself naturally. Now, spreading the word to others and helping others heal is my goal.

Q:  What else from your experience would you like to share with others who visit this site?

A:  No matter how bad it feels some days, it can get better, but don’t rely on other people, it’s up to YOU

Q:  How much money have you spent in UC or Crohn’s related healthcare costs since being diagnosed?

A:  For me it is well over $10,000 and way more from the insurance company side of things!

Q:  What’s your name, and where are you from?

A:  My name is Jen and I’m from Boston, MA of the USA!

The 3rd story comes from the Midwest of the US, Ohio to be exact, the founder of the Crohns Disease Support Network Jason has Crohn’s and the story is below:

Q: How did you get diagnosed? Do others in your family have the same thing?

A:  I was diagnosed in 1999 through a small bowel follow through – proceeded by a colonoscopy/endoscopy. I have bowel disease on both sides of my family. My maternal grandfather had colitis and died of colon cancer. My paternal grandmother had Ulcerative Colitis, my first cousin on mothers side has Diverticulitous.

Q:  What was life like for you after you were diagnosed? Did you see doctors afterwards, and what was the treatment plan? What type of medications have you tried, did they work? Any other thoughts you have feel free to put them down.

A:   I had a very tough time for a few years. I had to have many abscesses drained from fistulas. I then had a resection surgery removing 15″ of my small intestines and 3″ of my colon – including my ilium and cecum. I have seen doctors since 1999 – and have been on a wide variety of treatments. Pentasa,Prednisone, Remicade, 6mp, Methotrexate, and finally Humira. Unfortunately – I am not in remission. I have traveled to the Mayo Clinic in Rochester, MN working with some amazing Crohn’s Specialists – Last visit was Nov 08.

Q:  What has been the hardest part of your life with relation to your disease? What has been the best part? Have there been any strange things that have happened to you on the medical side, or any questions that have gone un-answered?

A:  The hardest part of living with Crohn’s Disease was learning my boundaries. I usually would push myself to hard and would pay the price. The multiple surgeries has also been somewhat taxing. Thankfully I haven’t had one since 2005. The best part is I have learned to live and appreciate each day one at a time, notice and love the little things, and a large compassion for many illnesses. Recently I created a support network for Crohn’s and IBD patients. It has been incredibly humbling and cathartic.

Q:  What else from your experience would you like to share with others who visit this site?

A:  I would have to say that Crohn’s Disease can vary a great deal for every patient. Learning what foods you can handle is a big aspect. KEEP A FOOD DIARY! I did for 1 mos and was able to find out trigger foods. I wrote down everything I ate, when I ate it, and if I had any symptoms.   Also – Find a DOCTOR YOU ARE COMFORTABLE WITH. Something I have learned is that GI docs are GREAT in understanding how the digestive system works ..and MOST bowel conditions …but NOT ALL know much about Crohn’s – as it is incredibly complex.

Q:  How much money have you spent in UC or Crohn’s related healthcare costs since being diagnosed? For me it is well over $10,000 and way more from the insurance company side of things!

A:  OH gosh I don’t even know …I know my resection was 90k before insurance …they picked up a great deal. I have been incredibly fortunate to have a father who has picked up what insurance hasn’t. I am unbelievably fortunate to have him in my life – he is my hero. I would venture to say between remicade treatments and surgeries maybe 20k from 99-10. ALSO I was sick all the time as a kid – had an appendectomy in 1990 so there are a lot to consider in that aspect also.

The Next Story comes from California from Lynne who has UC:

Q:  First off, do you have UC or Crohn’s Disease:

A:  I have UC

Q:  How did you get diagnosed? Do others in your family have the same thing?

A:  For about a year, my doctor kept telling me I had the Flu. I began to realize that it wasn’t the flu and researched it on the Internet. I told my doctor that I thought I might have U.C. He sent me to a specialist who diagnosed it after a colonoscopy.

Q:  What was life like for you when after you were diagnosed? Did you see doctors afterwards, and what was the treatment plan? What type of medications have you tried, did they work? Any other thoughts you have feel free to put them down.

A:  I really like my specialist. He put me on Asacol and later on Sulfazine and Folic Acid when I still had symptoms. A couple of years later he added 6MP and then cut that dosage in half.

Q:  What has been the hardest part of your life with relation to your disease? What has been the best part? Have there been any strange things that have happened to you on the medical side, or any questions that have gone un-answered?

A:  The hardest part used to be worrying about being near a bathroom. I stopped camping for several years. Also I have had to alter my diet and that can be difficult.  Lately I have been getting leg cramps in the middle of the night. It is like my foot goes into a spasm that spreads up my leg. It goes away when I apply heat.

Q:  What else from your experience would you like to share with others who visit this site?

A:  You need to research things and be persistent in dealing with doctors.

Q:  How much money have you spent in UC or Crohn’s related healthcare costs since being diagnosed? For me it is well over $10,000 and way more from the insurance company side of things!

A:  I have no idea how much I have spent? Our insurance is very good. We have dual coverage so most costs are covered with a minimal copay. However, the prescription costs add up quickly. I am very glad I didn’t take Humira. Not only are the side effects scary, but the cost is very high.

What is your name:   Lynne. I am from the San Francisco Bay Area.

(Thanks Lynne for sharing your story, we all wish you good luck in the near future, Adam and the rest of us with UC/Crohn’s!!!)

The Next Story comes from Cindy who has UC:

Q:  Thanks for your time, feel free to talk about anything, things we should talk about, crappy doctors, great medicines, great people, horrible foods, whatever, killing whales in the toilet bowl each morning, headaches, joint pains, side effects…whatever you want!

A:  Hi, My name Cindy. I just found out I have this in the hospital. This morning was 5 times of killer whales in the toilet. What helps with this? I’m the new girl on the toilet.:-) my email address is cinnydoglover42@comcast.net

thanks for sharing your story Cindy, I just responded to your email earlier, and hopeuflly others will be able to respond to you as well with other good ideas.

Here is another amazing person fighting UC

Hi Adam,
First of all I just want to say how amazing this website is! I love love LOVE your recipes, they all look great! I will definitely try the banana muffins!
I was diagnosed with UC 6 years ago and have been on and off steroids ever since. I recently got sick of hearing my consultant tell me that there was nothing I could do regarding my diet and began to explore the possibilities on the internet. I couldn’t believe how ignorant I had been! I have now been off steroids for 3 months and am eating loads of fish which I used to hate! I was never particularly fussed about food and even though I was reasonably healthy I didn’t really care what went into my body. Things are very different now! My husband and I take time to really plan our meals and think about what I should and shouldn’t have.I am a freelance violinist in London and with a very busy concert schedule life can get really busy and hectic. I used to grab meals here or there but now I make a real effort to prepare my own food and know exactly what I’m eating. I eat no wheat and very little dairy, life is really good! Fingers crossed it keeps working. Thanks again for the gre at site! Louisa.

Here was a comment made about how to make Chinese Food for Colitis

I liked your home made Chinese food post. The problem with lots of Chinese restaurant food (and Thai food, Indian food, any heavy curries) is that it contains heaping gobs of sugar. Sugary foods lead to seriously horrible squirts. Try cooking the food with a little water instead of oil. You can still season it the same and it will be easier to digest. Another fun thing you can try is pureeing raw or lightly steamed veggies into a creamy sauce… not exactly orange chicken, but still yummy
Thanks for the post “poezone” definitely going to give the water a try instaead of the oil.

Here is our first story from Australia from Carmen who has Crohn’s disease which is similar to UC:
I live in australia, I have suffered the torture of Crohns disease for over 47 years, 3 resections, chronic diarrhea for all of this time, constant fould smelling diarrhea and gas.
I am currently going with out bread, cakes sweets etc.
Taking enzymes, Probitocs, but have not noticed any improvment as yet.
Any help or ideas would be greatly appreciated.
Carmen carmwoman@gmail.com
wow, this is the record so far for someone this site has heard from who has been living with a GI disease for this many years. If anyone has any suggestions from the UC side of things, please let carmen know. Thanks for sharing your story Carmen.

Here is another Story from Ashley who has UC:

I’m Ashley and I’ve had ulcerative colitis/pancolitis for 5 years. I was diagnosed in February 2006 and almost died because they didn’t know what was wrong. I had 2 blood transfusions, bags of iron, potassium, antibiotic and many other meds. I was also on pain meds. For the next year and a half I did decently and was only on asacol, 9 a day. Then June of 2008 I started progressively going downhill. I’ve been on Imuran/Azathioprine, Asacol, Prednisone, and now Remicade. I bleed every day. I have horrible joint pain, stomach pain, and my immune system is extremely lowered due to the remicade. I get the max dose of remicade every 4 weeks now. The doctors want to put me on Cyclosporine to see if that helps. It’s a chemotherapy/anti rejection drug. Ultimately they are planning on surgery later this year. I’ll have a colectomy, ileostomy, and a jpouch. I tried controlling it by my diet, but that doesn’t help at all. I just try to keep a positive att itude bc that’s really all I can do. I’m really open about everything and would love to talk with anyone who has questions.   Lilsisashy@sbcglobal.net

Yo Ashley, thanks for writing in, I think you win the prize for the most inspirational person who is in a tough situation by anyone’s standards. thanks for sharing! (If everyone has this attitude on our planet, there would be a bigtime rush to earth’s doors from all the other planets I bet, thanks again!!)

Here is from an additional email Ashley sent in a few days ago much about diet and her colitis:
i’m always happy to answer anyone’s questions or talk to anyone about this disease.

about the diet(s) i’ve tried… well, when i first got out of the hospital, the doctors said soft foods and liquids and things like that for awhile, which i followed and seemed to be doing okay. then i tried corn, which i love. that ended up being the worst thing i could have eaten and it has now been 5 years since i last had a bite of corn. i used to enjoy eating salads. now though, i can only eat a couple of bites if i haven’t been bleeding or flaring… which as of the past 2 years, i’m always bleeding or flaring. i’m no saint though because i’ll take a bite or two whenever i really want some salad, even knowing i’ll be paying for it in a couple hours. good habits die hard. i’ve been put on liquid diets when i’m really torn up. i’ve tried baby food (and there is a reason we only eat that when we’re babies… it’s impossible to go back to that crap once you’ve had “real” food.) i basically had to relearn all my eating habits that had been instilled in me the past 21 years (i’ll be 26 in june.) when food really starts making me hurt and have 20+ bowel movements a day, i just drink Ensure so i can at least get the vitamins and nutrients i’m missing. i’ve tried all the yogurts, none of which helped. i went and bought the book by Elizabeth Hasselbeck on the Gluten free diet and tried some of that, it didn’t work (i obviously don’t have celiac disease.) i don’t eat really spicy foods – which can be difficult because i live in Texas and we LOVE our tex-mex food. i can eat some salsa but i can’t scoop chunks of it on a chip anymore and jalapenos are the devil’s spawn. good thing i’m from the south because southern comfort foods seem to be the easiest for me to digest, although not exactly the healthiest. basically anything that’s considered a carbohydrate (potatoes, pasta) seem to digest easily. now if only they could do an atkins diet except with carbs, i’d be great. every meal and every snack is a conscious decision. if i’m feeling brave or don’t care if i have to deal with pain and bloody bowels in a couple hours, i’ll take those bites of salad – usually that’s if i know i’ll be home and it won’t distract me from other things. if i’m out or going out, then i’m much more aware of everything i put in my mouth because i want to enjoy my time out as long as possible. as far drinks go… i’m not lactose intolerant, so sometimes i’ll drink chocolate milk (or have regular milk in a cereal, if i can tolerate the fiber in cereals), i drink a coke/pop/soda everyday, at least one a day – it’s weird, but the acids in the coke/pop/soda seem to counteract whatever crazy stuff is going on in my intestines and make things a LITTLE bit more tolerable – or maybe it’s a psychological thing because i really love my coke/pop/soda. i try to drink water as much as possible and i love sweet tea. alcoholic drinks though… i usually just have one or two for special occasions or if i’m out with a group of friends i haven’t seen in awhile, etc. drinking is no big deal to me, sort of like anyone over the age of 21, now that you can do it legally it loses its appeal – especially when it makes you hurt and be even more bloated than a normal person gets.

i know people with UC or Crohn’s that can eat anything they want and drink anything they want and i want to strangle them because i’m jealous. it’s like they don’t even have the illness. but then i remind myself i have pancolitis, which means my ENTIRE large intestine is a butchered piece of meat and the severity of my case is very high. i’ve done a lot of trial and error with various foods and i’ve just had to figure out what works specifically for me. everyone is different and i think a lot depends on the area you’re from as well.

hope this helps! feel free to use any of my story or photos. i’ve got some pre-steroid photos and some post… and there’ a definite difference. i love being able to contribute!

Ash

Here is a message from someone who is having GREAT success with diet for their UC:

I never realized what I had was closer to UC than it was to IBS (which is what I was diagnosed with). I now have neither problem. After suffering for 20 years with no help from the medical profession (or even a diagnosis that I believed), I now have cured myself completely with diet. I still have some health issues, but they are from the damage done to my body by malabsorption and chronic diarrhea for 20 years. I no longer have any diarrhea unless I get a hidden source of corn slipped into my diet.

I know that SCD is a pretty effective tool to control UC, but I think it only helps because it takes out most sources of GMO corn – there are still many hidden sources of corn in the diet. After months of research, I discovered that it is food additives made from GMOs and hidden corn derivatives that make my life miserable. I was diagnosed with chronic fatigue, fibromyalgia, and asthma. Only the chronic fatigue remains and I think it is because of adrenal or thyroid damage done by the ingestion of GMO corn (unknowingly for 20 years) when I couldn’t tolerate it.

I can now eat anything I want as long as I make it myself from corn-free ingredients. That includes bread everyday. It requires finding an unenriched wheat flour and knowing which yeast or baking powder is corn-free, but it can be done. Any food that is enriched contains GMO corn {this included organic vitamin D milk and table salt) and yeast is grown on corn and baking powder contains cornstarch.

The GAPS diet is something that has helped me in my recovery. I urge you to search for hidden sources of corn and remove them from your diet if you still have any symptoms. Here is a list of common corn derivatives: http://www.cornallergens.com/ This is a list of corn-free products: http://corn-freefoods.blogspot.com/2007/12/corn-free-foods-products-list-dec-2007.html And here is a forum for anyone that wishes to avoid corn: http://forums.delphiforums.com/AvoidingCorn/messages Lots of updated information on the forum – it helps me daily.

Here are some of the lifesaving facts that I found on the forum. Did you know mushrooms are grown on a corn medium? almost every drug available contains corn derivatives? all vitamins contain corn even if it isn’t listed on the label? apples are coated with a corn wax? prewashed produce is washed with a corn solution? bananas, tomatoes and potatoes are gassed with a corn gas to ripen them? cheese made in this country contains enzymes that are grown on corn? white vinegar is made from corn? citric acid in canned vegetables is actually corn? vanilla extract usually contains two different sources of GMO corn?

-Thanks for posting that stuff above, makes me want to try cutting out the corn from the diet in a major way, its surely going to be hard to get over the tortilla chips though…

Next is from Jason who is the founder of the Crohn’s Support Network website, which is an unbelievable resource to Crohn’s patients worldwide and the link is to the right:

Adam thanks for this fantastic UC resource. It is much more then a blog – I am very impressed. Your attitude is one that should try and be adopted by many people with an IBD. This is just another reason I chose you as this weeks (March 7th-14th 2010) as the Crohn’s Disease Support Network – CDSN member of the week!

I look forward to reading more about your jorney, and how you healed yourself with diet. I’d take that and natural supplements over chemicals, toxins, and pain killers any day!

From what I have read, it truly is amazing how similiar Crohn’s and UC are. I suppose the “good” thing about UC is it doesn’t effect your mouth to your ass …now THAT can be fun lol.
personally thing some doctors are plain dangerous. If I had listened to my first GI
I think it is great to focus on doctors who don’t know what they are doing. I doctor I would be dead …no dbout about it. Recently I saw a GI and she not only was just incredibly uneducated about Crohn’s – she didn’t even know how to rescribe a procedure properly. NOTHING she described was accurate …that just isn’t right. I almost want to start an IBD Patients VS GI Doctors Capaign to try and shatter the egos and god complexes so many doctors have. Listening to other members on CDSN it is WIDE SPREAD. SOMETHING neds to change….

Keep up the good work, and I look forward to seeing how your blog grows!

Next comes a UC fighter who is 18yrs old, and getting ready for college: (bigtime positive attitude you can tell!)

When i was 16 i began having syptoms of UC i was diagonosed at 17, May 2009 and am now 18. It’s a continuous struggle! I have not been in remission yet and its crappy! I have been on pred. and that made my face so round and acne every where, it was terrible! Colazal and enemas havent really done anything for me and 6MP and immuran made me sooooooo sick vomitting, diarrehea, blood non stop, landed me in the hospital for a few days on IV’s galore. Next & laslty i got remicade infusions, they were the miricle drug for me for two months but then i built up an immunity and they no longer work. I tried the Specific Carbohydrate diet and did not feel much relief… It wasnt that bad though, the first week was hard, but then there are lots of yummy foods my favorite was spagetti squash macaroni and cheese! now i am only drinking ensure until i talk with a doctor about surgery. I hope i can get better before college this September! but even if i do nt i will still have a great time, UC doesnt control my life and unfortunately that has lead to a few accidents, i played the final four field hockey game with no underwear, pooped on the side of the highway and had accidents at the mall and SAT’s… i just laugh now and :)

Next is someone who has found ways to get past UC while studying at University:

I’ve had ulcerative colitis for close to 5 or 6 years, and honestly, I feel my life will be cut short if I continue my medication. I’m not a doctor, but I am a student in a University. I have been jumping rope for the entire time I’ve attended the school, and the symptoms seem to have gone away. I’m not sure if being active helps, but it seemed to have helped me. For those who are too sick to be active, let the medication help first. I’m just putting my two cents in. It’s a suggestion, if the medication is bothering someone like it is bothering me.

Next is a super awesome potential alternative medicine breakthrough from Grant who has UC:

Glad I found your site. Thanks for putting your time and energy into it.

I’ve had UC for 6 years now. I am a 55 yr old Caucasian male in otherwise good health. I could lose a couple of pounds, but who couldn’t? Asacol three times a day. I guess my case is what could be termed mild. Thats what Doc says anyway. I have bloody bm’s most days – some days worse than others. Colonoscopies don’t show anything abnormal. Just run of the mill uc. Last week I had a fairly bad week. Lots of stress and bloody bm’s accompanied with cramps. Read about nicotine patches and their possible use in treating uc symptoms. I figured what the heck, so yesterday I went out and bought a box of the low dose patches. About a half hour into sticking the first one on I did feel lightheaded. As a former smoker I recognized the buzz. Symptoms became less severe by the end of the day. Today I am much better. Took off yesterdays patch and put on a new one after breakfast. Don’t know if its the patch or not but I will keep you posted.

(   Pretty interesting stuff eh!!!, thanks bigtime Grant, and hope to hear more inthe future from you!, Adam)

Jennifer from the US has UC, and she is getting ready for some alternative treatment finally:

Hi, I am Jennifer. I am thrilled to have found this site and I thank you for starting it! Today, I had a bad day and … let’s face it, there are not many that want to hear about the trails of UC. I need to vent! (Sorry.)

I am 33. I was diagnosed with Ulcertative Colitis almost 10 years ago. Like many, I have been on a list of medications, hospitalized three times and presently, I am “eh.”

Since being diagnosed, I have had two beautiful daughters. My doctor allowed me to stay on my meds while I was pregnant with both. In my first pregnancy, as my body changed, my symptoms disappeared until my daughter was born. (Then, came hardcore.) In my second pregnancy (which was a bit of a surprise), I was just coming off of Prednisone when I became pregnant. That time, I did not have much of a change from my every day “up and down” of Colitis that I have now.

Today I hit a wall. A couple of years ago, with the medication’s release, I went on Lialda. It is a very expensive medication, but I had a great prescription plan. Well, I have since lost that great plan after becoming a full-time, stay-at-home mom and relying on my husband’s plan. His insurance allows each family member a sum of money within the calendar year. I have learned today that I exhausted that amount. When I was told by the pharmacist today that with my prescription discount card, my total was $495 for this month’s meds, I said “no, thanks.”

I called my husband and told him the story and I am not getting it. On his way home from work he stopped by the pharmacy and purchased the medication. I immediately ran back with the unopened bottle and returned it. Now, my husband is angry with me that I am “being selfish.” He says that I will be in the hospital within two weeks, the girls need me …

What he does not understand is that I am set in my mind that I AM DONE. It has very little to do with $495 a month and a whole lot to do with me wanting to regain control of my life! In an attempt to rebell against meds, very early on in my UC diagnosis, I “took myself off of meds.” I DID NOT make any effort to change my diet or seek alternatives. Now, I want to give it all a try.

I am not neglecting my body, I am trying to do better for it. I am tired of putting crap in my body, ESPECIALLY, when the outcome is “eh.”

(Thanks Jennifer for writing in, I just sent you an email with a follow up, would be more than happy to be of any assitance to you, and most definitely, I would put a massive bet down in Las Vegas that you would have the same results as me with diet as a treatment, anybody want to book that bet???)

Melanie from Canada has UC:

I am from Canada and luckily I have health insurance through my husband as I wouldn’t be able to afford the drugs. As it is I spend about $600.00 every three months for all my drugs (luckily all covered) and I am interested in reading up about “the diet” as I have been recently trying to change what I eat. I asked my doctor about changing my diet and he just said that nothing has been proven. I know myself that there are certain foods that keep me locked in the bathroom for hours on end so I believe there has to be a link. I found out about this site through groups on facebook and I like to be able to hear stories of others who are suffering through the same things as myself. At the moment I am happy to say that I am going into remission after almost a year flare-up caused from my last scope. The reason for my remission is from Prednisione which I hate as I have started to get “moon face” and it is depressing to look in the mirror to someone you almost don’t recognize. I look forward to reading more on this site and I give kudos to those who run it and give support to all those in need. So thanks!

Melanie
Ontario, Canada

(HI Melanie, thanks for sharing, and that’s super awesome you are in remission!  -Adam)

Benjamin from the US writes:

Does anyone else experience lower back pain (primarily on the right side)? I’m not sure if this is tied to UC or not, but it comes and goes in severity (much like my UC). Because I notice it most in the mornings, my doctor has always attributed it to something that happens when I sleep (e.g. bad pillow), but I’m not convinced.

Kacey wrote in in August 2010 saying:

I have been having stomach problems for about 5 years. Then, I went to the Dr. for possible nerve damage in January of 2010….They ran blood tests and accidently ran the one for IBD and it came back positive, they ran it two more times just to make sure. It came back positive all three times. I was sent to a Pediatric Gastroenterologist… Pretty much he said he has no idea and put me on meds for a parasite…Which I dont have….We went to fill the prescription, thinking it might help… The prescription was $900 for 5 days.. So, we didnt get it since that wasn’t what it was..We call him and try to talk to him but his receptionists are never there…So, I’m back to where I was about 5 years ago. My mom also has UC and we have all the same things…I am almost 99% positive that is what it is. ( we already had to drive 5 hourse to get to a pediatric gastroenterologist)

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