Hi there!

My name's Kelsey, and I was diagnosed with UC about a year and a half ago. It was a pretty aggressive case, and I was in the hospital a couple times for blood and iron transfusions. I've been on prednisone about 5 times now, and started off on Mezavant (I think that's like asacol?). That was proving to be ineffective, so they took me off that and recently put me onto Immuran. It seems to be working so far, fingers crossed - no flare ups or symptoms in almost 3 or 4 months now?

I haven't found that I have any "trigger" foods to avoid, which is both a pain and a relief. As for you testing negative for celiac, unless you had an actual invasive test, the screening test is HUGELY inaccurate. I work a gluten-free bakery, and one of my coworkers is incredibly celiac (he can't want into Subway without getting ill from the gluten in the air), and the screening test said that he didn't have it. It's always worth a shot!

It took a long time before I felt strong enough to exercise after losing so much blood (my hemoglobin was 71 at one point - back up to 125 last I was tested, woohoo!), but I've been on very high doses of iron for a long time now, with an iron injection every once in a while. I'm just finally starting to be able to exercise without being totally winded straight away. When I was very sick, walking 20 feet would make me feel like I was going to pass out.

That must've been very challenging to be pregnant on prednisone! That's one of my greatest fears for when I decide to become pregnant. I actually need to visit my doctor, since I've only gotten my period about 3 times in the last year (the most recent being back in August).

Very nice to meet you!

I was diagnosed with hypothyroidism in June 2011 but I had the symptoms a lot longer- maybe as far back as 1996! I thought I was just "depressed" and overweight.

I found out I had ulcerative colitis in December 2010 and reflux in September 2011. I was SO SICK last year; it really sucked. I was sleeping all the time when I could and had a persistent nagging cough that never went away (it was the GERD). I took a bunch of meds until I decided to change my diet. Mostly dropping wheat and gluten and all soy. Limit tomato, chocolate, alcohol (hey I'm human... I eat those things and drink a glass of wine sometime!) GI Doc said he didn't believe it was gluten and soy allergy causing the UC flare - however, I dropped them from the diet and was able to drop the meds (asacol 3x a day). Been off them for 6 months! All I care about is feeling better and not "who's right"; he's a good guy so I kept him as my GI Doc.

Switched my primary care doc, however. Saw her 12 years and she never checked s**t except my cholesterol and iron levels even though I complained about being tired and cold all the time. Also, to be honest, I avoided going to doc except once a year - just thought I could tough it out and make it through on my own. Switched to a new Doc and she is FABULOUS. She supports nutritional changes and encourages her patients to experiment with what works for them (as long as it is not harmful). Dropped the reflux meds too. Now just taking the levothyroxine.

Being diagnosed with three autoimmune diseases in a one year period sucked! There is little research about connection between hypothyroidism and ulcerative colitis/chrohn's disease/ celiac disease. I am convinced they are related! And so is GERD.

2011 was difficult - maybe most difficult of my life. But here I am... I am taking it one day at a time and glad to be where I am.

Hello all, so glad to see this group on here! I've been diagnosed with UC since 2007, but I'm positive that I've had it a lot longer. I just never had a doctor willing to take the time to investigate my complaints. I'm on Apriso 4 pills a day and Canasa suppositories 4 times a week. I have been in the ER already 3 times this year alone. I know fruits and vegetables set me off, along with high fiber foods. I try to eat a balanced diet with little fruits and vegetable along the way.

Oh not alot of caffeine either

Hello!

My name is Evelyn and I'm 22, i was diagnosed with U/C when i was 11 in 2000. I never had flare ups so to speak, i was just generally fairly ill with it. I never had a day where i was feeling better. I was hospitialised a few times, have had numerous doses of steroids. In 2007 I ad my large intestine removed, a J Pouch created and an ileostomy fitted. 10 weeks later, i had the bag taken down and everything reconnected. Despite getting an infected wound site and struggling a lot with the bag (my skin got infected and the bag wouldn't stick) i believe that my quality of life has vastly improved.
I am having no accidents, no stomach pains (unless i need the bathroom), i am not aneamic anymore and i can eat most things with almost no problem. The downside is that i am still taking a lot of medication, i take 3 5mg of loperamide 3 times a day.
On another note, getting D&V can be dangerous, i have been hospitalised twice in the last couple of years due to a basic stomach bug. Most recently on holiday in Paris i ended up in hospital with damaged kidneys after continual vomiting and sever dehydration for a couple days. My point of saying that is....that people with U/C tend to be slightly dehydrated on a daily basis, if you get D&V do NOT wait as long as i did. 12 hours maximum and then get to A&E. Top tip of the day!

Hi everyone! My name is Jill andI was diagnosed with UC when I was 9. At the time I was only the second known case in Oregon and the youngest the doctors where I was at had ever heard of. So for my parents it was a scary thing because the doctors where I grew up knew nothing about it. Mine seems to be a more mild case(Thank god!) I only have flares about every 2 years mostly brought on by stress. My husband is in the military(currently working on getting out) and everytime we move I have a flare up. Right now I am currently dealing with one of my worst flares. We are going through huge life changes with my husband getting out of the military we have moved and are basically starting from scratch. So VERY STRESSFUL! I'm currently taking Apriso( 4 pills a day). The last time I had a flare I took apriso and it cleared my flare so quickly I was amazed!!!! But this time I have more stress and it is taking a while for this flare to clear up but fingers crossed I will feel better soon!

i was diagnosed in 2009, about a year after i quit smoking. i had one incident at about the six month mark, but at that time, i thought that i just had a very bad bug. when they diagnosed me, though, i had been in a serious flare for more than a month and was concerned that i was in real trouble.

stress certainly seems to contribute. oddly, also, the time of the year seems to be a factor. for me, i'm generally ok from mid spring until mid August. food triggers : i am very sensitive to caffeine, which is also strange. i used to drink a great deal of coffee with no problems. i also experienced a flare after eating a lot of chocolate on my birthday over a year ago.

the regular medication i've been on is lialda (mesalamine). used alone, it helped, but i still had flares throughout the year, though not as serious. i was having to take prednisone to stop them, and the tapers got longer and longer. i did a little research on pub med, and i discovered that there are a lot of ex-smokers who have UC. i decided to give the patch a shot to see what happened. i found i am allergic to it, so i tried nicotine gum. since then, i've been largely ok. the flares seems to be much milder. this could very well be a placebo effect, and it could also be the lialda finally working. i can't say for sure, and i'm only one data point.

my theory is that if i can go long enough without a serious flare, perhaps the condition will ease and i'll be able to get off of the lialda, which is incredibly expensive. whenever i change jobs, the first thing i want to ask about is the insurance plan. my current one finally put a max on out of pocket per medication (90 days), so that has reduced my costs some.

i have to say that as much as this condition sucks, it could be a lot worse. after the first two weeks in 2009, i was beginning to think that i had terminal cancer. i was starting to plan for the worst. luckily, it wasn't.

Hello everyone!

My name is Tamara, and I was diagnosed with Ulcerative Colitis 6 yrs ago. It was a severe case of pancolitis that was put me in the hospital. Interestingly, I had an essentially negative colonoscopy only 6months prior to this due to bleeding hemorrhoids and a family history of colon cancer. (My Dad passed away when I was 16, and I have had colonoscopies to check rectal bleeding, (starting during my first pregnancy at age 24), since I was high risk for colon ca.) I had been a smoker for about 15 years before quitting in '05, and my GI doc admitted that if I had not quit, I probably never would have had such a severe attack of colitis in the Fall of '06 when he diagnosed me, and that the nicotine and other substances in tobacco had probably hidden the fact that I had colitis, or at least that the lack thereof had an effect. But quickly weighing my options, UC symptoms still seemed better than lung cancer so I never went back to smoking.

I had an extremely painful, and frustratingly long, time of it with the colitis symptoms themselves, but after being admitted to the hospital, I came home on steroids, and that compounded my problems. After the initial stages of controlling the fevers and diarrhea with Prednisone, I was also put on Asacol, and then Sulfasalazine, which seemed to control the diarrhea and pain, for about a year, and a half..

During that time I began on a high dose of prednisone, and had it upped several times in the first few months in an attempt to control the inflammation and fevers. The problems began when I started tapering off the steroids. The worst of my symptoms was that I had pain in every single joint in my body, and severe muscle cramps that would always seem to be on the verge of spasming into a new cramp. I was amazed to realize that this was way worse than the original colitis ever was, even as severe as that was (my CaT Scan showed my entire large bowel walls were thickened and inflamed as well as a section of my small bowel.) The steroid withdrawals were the worst thing I think of from my whole experience. Once I got off the steroids, I quickly tapered off the rest of my meds and swore I would never take steroids again unless it was on my death bed. lol. Ugh!

After somehow making it through that frustrating year and a half, I have been in remission. I have had occasional bouts of diarrhea (or constipation), but mostly I deal with abdominal pain and / or bloating with specific foods. I have just begun to feel back to my old self in the past year or two.

I had a recent moderate to severe pain in my left upper abdomen though, and another colonoscopy showed that I have scarring in the splenic flexure of my large bowel. Pseudo-polyps. I have lost a lot of weight in the past few months over this, and most of it was from a not quite immediate pain response to foods, (about 20mis after eating). I quickly switched to a bland diet, and am still on it. No fruits, nuts or veggies, no beef, no caffeine, no spicy foods.( I have eaten more ice cream in the past few months than I ever did when I was gaining weight after quitting smoking, hahaha.) I still have occasional pain first thing in the mornings, but it is mild. If it is there during the rest of the day, it is only because I have tried to introduce a no-no food into my diet to test it. I am not sure if the pseudo-polyps are always going to be this way or not, but I am hoping I can start back to a normal diet soon. I have been craving fruits and veggies like mad, and know I am missing nutrients there.

Anyway, that's my story. I am so glad that I found a place where other people with UC can bounce questions or thoughts around. "Thank you" to whoever started this group. I have a friend down the street with IBS, but no one who understands IBD's. I know there are similarities, but Inflammatory bowel disease is definately different than what she has ever dealt with. I started using MFP this year after getting a new phone, and thought it would be handy to track my diet to correlate with how I feel. That seems to be working quite well, and have actually been able to healthily lose some weight during the first few months....now if only I can figure out how to access this group from my phone.....

Hi all. My name is Jackie and I was only recently diagnosed with UC though I'm pretty sure I've had it since I was about 16. I'm 32 now. During high school I ignored pretty much all of my symptoms and dealt with what I couldn't ignore as best as I could. I was very active in sports and even though I was overweight according to the weight charts, it was only about 20lbs at the most and most of that was muscle from lifting weights. By my junior year I had stopped eating while at school because I didn't want to have to leave class in hurry. When I went to college it got worse, and I managed to gain too much weight at the same time! Long story short, by the time I complained to my dr about my intestinal symptoms I was told it was due to the weight gain. I got nowhere telling dr after dr it started before the weight gain. Then I stopped trying when a GI told be that it couldn't be very serious or I wouldn't be so fat, and that he thought it was all in my head. I ignored the bathroom trips and just figured no one was going to help me. Then, while at the obgyn for a huge ovarian cyst I tried to tell someone just one more time. She listened and sent me to a different GI who immediately started ordering tests. After everything was done and all the results were in he told me that my biopsy had come back positive for UC. He didn't really see much while he was doing the colonoscopy, but as he said, the biopsy doesn't lie! I started off taking entocort which did nothing except add 10lbs to what I need to lose! I'm currently taking Lialda 4 pills a day and it is helping. Hopefully now I can try again to lose the weight. I started MFP once before, but ended up stopping because it seemed like everything I tried to eat that was healthy caused problems and I became very frustrated with trying to figure out what I could eat while trying to lose weight. I've now got a large list of foods that bother me, and of course they are my favorite healthy foods! Whole grains, strawberries, bananas, nuts, most greens, and oranges top the list, but it's a lot longer. There are very few fresh fruits or veggies that I can tolerate. I can manage one greek yogurt a day, but other than that milk and dairy are out, also. It is good to know that I'm not the only one with UC who needs to lose weight. For a long time I believed that I really couldn't have anything serious because I was so overweight.

Hi all! My name is Lisa and I'm 34, I've been using MFP for a few weeks now, but only just found this group - what a relief to find others out there who have UC and need to lose weight too! It's a common misconception I think that if you have an IBD then you're really slim because of it.
My story to add to the list - well, I was referred to a consultant about 7yrs ago by my GP (though I think I had symptoms for several years before that but just ignored or dealt with them) and got a diagnosis about 5ish years ago of UC - there was a bit of to-ing and fro-ing because my symptoms were a mix of Crohn's and UC. The difficulty with my UC is that while it's chronic and not acute, I have never been able to get it properly into remission. I have literally been through every medication option out there:- azathioprene didn't agree with me, asacol worked for a little while, I still take mezovant though i'm not convinced it does anything, was on a combination therapy for a while but cant remember what that was now - there was a load of other stuff too which I forget.
Whenever I took a bad flare, the only thing which would settle it back down was prednisolone, so spent pretty much the last 2.5yrs taking it - it became less and less effective over time, till I was barely finishing a course of pred for maybe two weeks and was flaring up again.
I managed to avoid hospital till last year, when my haemoglobin dropped to 80 - such a weird feeling, never felt anything like that before in my life. Ended up having to get a blood transfusion of 2 units blood - the docs then decided to try me on the Infliximab infusion, this seemed to work like a dream! But 6 weeks later my liver started to stop working and I ended up back on the ward with chronic jaundice.
I was back on the ward in May this year, this time to do a meds change from the combi treatment I was on to injections of adalumimab - so far I've had 7. It does seem to work a bit, to begin with it was fab, but its almost like its getting less and less effective as time goes on. My injections are once every 2 weeks right now, and in the two days before my last one I was really sore and crampy and feeling like a proper flare was starting. My doc says I could try a weekly injection for a while to see if that helps, but the side effects are not the best - I'm losing a lot of hair and my skin has dried out all over sooooo much no matter how much i exfoliate or moisturise.
Sorry this is turning into a total book!! The injections are my last option and I'm waiting on a colonoscopy before doc will make any final decisions. I was interested to read the post from the lady who says she had the surgery and was then reconnected - that's my next option if doc decides meds are just not doing it for me. I'm so tired of all the meds and feeling rubbish, never mind all the toilet dramas (too much/not enough/unexpectedly), I suffered proctitis for a while too and can totally sympathise - last thing you want to do is put things up there when its so bad!
I've never really had trigger foods, as a lot of you say it can totally depend on the day - I try to limit obvious ones like caffeine, bread, full fat dairy and citrus fruits, I also became teetotal a couple of years ago. Stress most definitely has an impact, for me anyway - not stressing can be easier said than do!

Apologies for the massive post - if you've managed to read this far (and stay awake) thankyou and I'm pleased to be here and meet you!