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Posted 3/19/2008 1:18 AM (GMT 0)
Hello. My name is Loren, and I live in North Carolina. I was diagnosed last year, almost exactly a year ago, when I was 29. I started having constipation, then a bit of blood, then next thing you know I was in a major flare. It is only in the last month that my health has improved (after 11 months of not-so-great health), thanks to rectal meds.

I work at a nonprofit that assists in wealth creation for low-income communities. We are a financial institution, and we do a bit of everything. Direct loans to people who would otherwise need a subprime loan, we have a credit union, we do policy work to limit exhorbinant interest rates, etc... my group works with mainstream, traditional lenders to make sure that the mortgage loans that they are making to low-income borrowers actually help the borrower build wealth/equity, as opposed to stripping out wealth. We help lenders sell those loans in the bond market via Fannie Mae mortgage-backed securities. I never thought I would have a job like this, doing finance, but I actually love it. I also do some writing in my free time, and am just starting to try to sell some of it for publication. In fact, it was my UC diagnosis that inspired me to start writing more, so I guess that is one good thing I got from this DD.

I got engaged last year, about 3 months after my diagnosis, to a really great guy from Ireland. He is my best friend and we're getting married in October. He is a PhD student at Duke, and he actually works in arthritis research in one of the departmenst of surgery at Duke, so sometimes he can help me to try to understand this crazy disease. At least, he can read those very technical research articles, which is something I definitely can't do. He is much more laid back than me, and I am delighted to be getting married to him, even if he is a full foot taller than me.
Posted 3/19/2008 7:27 AM (GMT 0)
Hi all, firstly thanks for being an amazing, responsive and supportive community forum. I've only been here 3 days and I see the difference.
I'm 23 and I was diagnosed with UC about 1 year ago. I had every classic, full-blown symptom of UC for over 12 months, yes you heard right, before seeking medical attention. "Are you crazy??" is a normal reaction. Sever denial is the plain answer. I never knew how bad sever denial can be, until I experienced it. 12 months of blood in stools, only diarhea, acute cramping (tenesmus) before and during, it was so bad, I developed a breathing technique similar to Lamaze just in order to 'go', fevers every night for 3 months prior to dx, 25 lb. weight loss, shortness of breath, major fatique, very pale skin etc.
had just transferred insurance and hadn't chosen a primary care doc and was procrastinating. I don't recall what finally got me to get a PCP and an appointment that week. When the results came back from the diagnostic lab, the doc's office called me up with an emergency. Dr. wanted me to get her office ASAP, to tell me that she wanted me to go to the ER, for a blood transfusion. To her horror, my blood counts and stores were almost off-the-charts and I was freely romping around the city (albeit very tired and slowly).
It was the weekend (less doc's in ER) so waited till the next week and saw a GI and started looooong road to what is now remission. Thank G-d, I feel great and don't think abt UC too often.
At one of the first few visits, my doctor said in awe, "You're a very stoic person, to have gone through ALL that for so long!." I was too embarrassed to answer because the answer would have been, "stoic? you mean stupid, for harming my body so seriously and not taking it seriously!" Strong? maybe, stoic? maybe but silly for not going to a dr, YES.
Slowly, really i spent less and less time thinking abt it and really being able to lead life normally again. ITS SO AMAZING TO BE HEALTHY!!!! I'm so grateful to The One Above for His bringing me through it all and finally to here.
Have my BA in Psychology and considering the Psych. field.
I do Public relations for a small private school here in Manhattan and teach computers to Middle school-ers. I'm involved in an organization that helps families with children with Cancer and other congenital illnesses. In the summer I work as a head Lifeguard in their sleep-away camp. I do respite in hospitals for family members and visit patients on weekends through the Chaplain's office. I love being able to help out and be a support for parents and kids who are sick.
Posted 3/20/2008 12:45 PM (GMT 0)
It's so nice to "meet" all of you!
Posted 3/20/2008 1:52 PM (GMT 0)
Loren - many congrats on your up coming wedding!

I second Sherry's comment! It's really great to meet so many people. It's this DD that connects us all. I must say that if I'm going to be stricken with such an illness, I'm glad I have such an understanding, fun, and supportive group to go through it with :)
Posted 3/20/2008 10:07 PM (GMT 0)
Hi! I'm Jay, a 30 yo male from Burlington, Vermont in a long term relationship of 5 years . I'm more of a reader of the forum than poster...

I was diagnosed about 10 years ago after months of D and finally getting a referral to a GI Doc. Before getting a referral, I was treated for a parasite for a few months. I went from 175 pounds to 120 pounds during that time and once I got that Prednisone and Sulfasalazine, I ate like never before. Eating popcicles and jello was like torture for me (I got a new primary Doc after the Parasite/UC fiasco).

I am a huge Yankees and New York Giants fan trapped in Red Sox and Patriot "nation" and enjoy playing Golf and Softball.

 

Posted 3/21/2008 1:09 AM (GMT 0)
Hi Jay! Glad you decide to post :) Happy reading!
Posted 3/21/2008 1:35 AM (GMT 0)
Hey BTV, do you really feel TRAPPED in Red Sox and Patriots Nation? You couldn't be trapped in a better place. Those teams are grrrrrrreat! Can you tell I'm from Boston??? Go Sox.........
Posted 3/21/2008 1:47 AM (GMT 0)
Hi! I'm Mandee and I was diagnosed with pancolitis after feeling very sick the morning of my college graduation May 2007. I luckily made it through the entire graduation ceremony without being sick, and just figured it was just an upset stomach. When it didn't clear up after a week I began to get worried and saw my PCP who didn't seem to believe I had much pain and slowly put some tests into action. It wasn't until 2 months later I was officially diagnosed and began treatment for UC. I was on prednisone and Asacol and just stopped the prednisone 2 months ago and am hopefully in a long remission (who ever knows right?) I am really happy to see so many others talking about their journey with the disease because I don't know anyone personally that has it besides myself!
Posted 3/23/2008 1:24 AM (GMT 0)

Hi, I just joined the forum! I am a 19 year old college student. I was diagnosed with UC last August, but all the cramping/bleeding/diarrhea/constipation etc. started in May. My doctors kept saying that I had a virus and it would eventually go away. It took my fourth doctor trip in July for my doctor to do a blood test and find out that I was severly anemic. After finally listening carefully to my symptoms and going through many GI tests, I was diagnosed with UC two weeks before beginning college. I was pretty much in remission until a few weeks ago. sad My GI increased my Asacol dose and put me on Canasa, which I started a couple days ago (and which is hurting my butt and causing slightly more bleeding!) mad

Anyway, I'm really glad I found this forum! I wasn't too upset when I was diagnosed with UC--I think I was just glad to have a diagnosis and the Asacol worked really well for those first few months. But ever since this flare-up, I've been feeling pretty down. But it's good to know that there are others who understand!  

Posted 3/23/2008 3:16 AM (GMT 0)
Welcome Jay, MJ and Comedy Dork - while its no fun to have what we have, its a comfort knowing the greater UC community is out there and on these boards for support. We're here for you!

Jay - Burlington VT is a beautful place in a beautiful state. We go to southern VT (Londonderry, Manchester and Weston) every winter as our get-away. We love Vermont's friendly, leisurely and rugged nature. Can you beleive it? I live a few minutes from Yankee Stadium and have never been there!

ComedyDork - I'm sorry to hear about your relapse. It happened while you were on the meds?
Posted 3/23/2008 2:53 PM (GMT 0)
:)  Yep, I had a relapse on meds. I haven't stopped taking Asacol ever since it was prescribed. I was fine the first few months and I haven't changed my lifestyle or anything since then. So I don't really understand why I have a flare-up now mad

Posted 3/23/2008 3:17 PM (GMT 0)
Welcome to HealingWell, everyone! I'm sorry you have to deal with this DD, but if you have to do so you'll find a lot of help and support here.

ComedyDork, I always say this DD comes and goes as it pleases. Sometimes it takes a different medication, or a combination of meds to get and sustain a remission. Try some K-Y jelly on that Canasa and see if that helps it go in easier. I hope you're feeling better soon.
Posted 3/24/2008 12:42 AM (GMT 0)
A little lube on those Canasa makes for a comfy anus - it soothes from the multiple bms too!

Oh - I love to keep Aquaphor in my purse. So many useful uses - put it on chapped lips, cuts, sores, etc - and use it for a sore bum! No one would question finding that :)
Posted 3/24/2008 5:26 AM (GMT 0)
ComedyDork - That's frustrating to flar up when all seems to be going fine! I hope you're trying different meds or combinations of meds with your GI, to see what will be effective.
Posted 3/24/2008 2:59 PM (GMT 0)
Thanks for the input Judy and dakotagirl--I'll be on the lookout for those the next time I head to store.
The increase of Asacol and using Canasa has seemed to help a little. But I just started it last week, so hopefully as time goes on, it'll get even better!
Posted 6/14/2008 3:57 PM (GMT 0)
We have a lot of new cyber-faces again. Don't be shy, introduce yourselves and take a read to get acquainted!
Posted 6/14/2008 4:53 PM (GMT 0)
hi ya'll! i'm veronica from alabama. married to donald and mom to chris and emily. chris had UC since shortly after birth, in fact thinking back i'm a little worried that i may have "given" it to him. he was breastfed and i had to stop bf'ing him for a few days while i took antibiotics, and maybe i started back too soon. or maybe he was just born with it. it's very painful to think i may be to blame, but we can't change what already is right. anyways he was dx nov 2007 after long struggle with the pediatrician to refer him to the GI. he kept telling me a little blood is normal and maybe it's a stomach virus. nope, chris had never had a normal BM in his life. so just as soon as we met the GI they were really concerned and did the scopes and he was dx the next day and on meds. he went into remission and finally got healthy, and the last few months have been a relief. we were even able to get him completely out of diapers. he was scared to poop on the potty because of how traumatic pooping had been previously. now though he is having a little flare (not nearly as bad as some of the things i've read on here) but we're working on getting that under controll, and looking forward to (hoping for) lots of healthy years ahead of us.
my main worries are that he'll have to suffer through the worst case scenarios. and that my daughter will get it too.
i really appreciate being able to read about all the stuff ya'll have to deal with. it gives me a better understanding of what he's going through.

on a lighter note: chris loves ninja turtles and transformers and "scary" movies, and playing outside, reading, learning letters and numbers, animals and going to the beach! oh, and i love chris!
Posted 6/14/2008 4:54 PM (GMT 0)
24 yr old male from Memphis, TN. I married in to collitus back on April 19th. Being married has been awesome, collitus sucks. I work for a bank hq'ed here in Memphis as a Members Service Rep. I am trying everything I can to get out of my job because I never wanted to do banking but that is what I did in college. I am a proud grad of the University of Memphis and am still depressed about the way we lost to Kansas in the finals of the NCAA's. I am a diehard Tiger in every sport. Pro sports I don't really care about as far as a fan, but I do watch. When watching Tv I love House and recently became a big fan of The Office. I love music and have really fallen out of playing much music. Golf is also a big hobby of mine. My wife is known on here as jellybean, so don't be alarmed if I tell her I love her. Haha. I've been a lurker on these boards for several months now. Right now I'm just juggling how to act and react to this crazy disease.
Posted 6/14/2008 6:11 PM (GMT 0)
Hello there, my name is Bianca. I am 29 years old and come from South Africa. I am single with no children. I am a PA

I was diagnosed with uc in 2006, it nearly cost me my life, but thank God, He carried me through. Ninety percent of my colon had to be removed in an emergency operation. I am still wearing a colostomy bag. The reversal is being done next year, but I am considering having the J-pouch operation done instead, because I am still experiencing a lot of discomfort and slight bleeding now and again.

Despite my condition I am a person with a zest for life. I enjoy life and experiencing new things. I have started with guitar lessons this year which I thouroughly enjoy and I am busy studying Journalism part-time. I enjoy the outdoors and love travelling and have been in Spain, Morocco and Gibraltar and London (but only for a quick pit stop....lol)

Life is so short and I believe that you need to make the most of each minute and don't leave each other angry, because it might be the last time you see each other so try to keep short accounts...

I try to not let my condition get me under, but there are days when I feel a bit down, because of this colostomy bag (which i sometimes call my "boyfriend" - lol) Luckilly the happy days overshadow the down days, because I am just so grateful to God that I am alive today....it could have been so much different....I could have died on 1 September 2006.

Anyway, I don't know what else to say....oh yes, I am so happy to have come across this very useful and user friendly sight. It really helps me A LOT!

:-)
Posted 6/14/2008 6:34 PM (GMT 0)
oh yes i 4got to mention that i love music! and that i can sing....a little alto lol and that i just love writing poetry and short stories and that's enough for now: :-) i'll add some more when i think of something else :-)
Posted 6/14/2008 6:35 PM (GMT 0)
yooooohhooooo! i have been upgraded from a "new" to a "regular" member :-)
Posted 6/14/2008 7:44 PM (GMT 0)
Hey! My name is Brian and I live in Baltimore, Maryland. I was diagnosed in 2006 (On my 16th Bday) with Ulcerative Colitis. I am currently 17. Some days I wish colitis would not have hit me so early but others I am glad. This has made me a stronger person and also helps me realize how great being out can really be. (Also my young age seems to help when I get over flares fast)

I enjoy being active. I try to get out every day even if I am flaring and risking the embarrassment of things that could happen. Recently before my first flare ever I started getting into martial arts. I currently am a Black sash in Kungfu and recently started Karate also. My girlfriend got me into running lately since I have been lazy since my last hospital visit (Got pneumonia was in for 12 days. Needed lung surgery. Thoroscopy or something and lost 15 pounds) We run 5k's together although I cant do the whole thing yet =( ha ha Swimming is one of my favorite hobbies. Going cliff jumping and just swimming at my local pool with friends. I enjoy all types of music pretty much.

My meds recently switched due to being in a flare right now from 8 months remission
Used to be - 3 x 3 Colazal a day and Flora-Q pro biotic

Now
-2x Lialda when I get up
-40mg Pred over the day
-4 flagyl antibiotics
-Flora-Q
-Multi vitamin and magnesium supplement

Hoping to be better soon
Brian =D
I really don't post but I read up a lot sometimes
Posted 6/14/2008 8:18 PM (GMT 0)

Welcome to you.

Veronica, I know it must be so hard to see your son suffer with this DD, but you didn't give it to him. Antibiotics don't cause UC. They give us diarrhea and can open the door to infection and flares, but the UC has to be there to start. And by breast-feeding him, you were giving him the best possible start. There's evidence that shows breast-feeding reduces the chance of a child developing IBD any time in his life.

Uofmcamaro, you're a brave and good man to take on someone with UC and to be so supportive of her. Jellybean is lucky to have you in her life, as I'm sure you're lucky to have her.

Biancacharlene, I think the j-pouch is a good choice for you. Generally, only total colectomy is recommended for UC, as the disease will almost inevitably return in any portion of the colon not removed. Your energy sounds really positive, and that will help you through. LOL on the "regular" member. I remember that excited me, too. Then I got blabby and it didn't take long at all to get to "veteran" member.

Brian, don't be shy, let us hear from you more! I was older when diagnosed, and I always think it's unfair how this disease so often affects young people who are just trying to start out in life. Your outlook is amazing and inspirational.

Posted 6/14/2008 9:45 PM (GMT 0)
Hello!

30 year old female from Boston - diagnosed this past October when I was about 6 months pregnant with my second child. My OB was wonderful - his daughter has UC, so he was a great resource, and referred me to my GI, who has pretty much been the best doctor I have ever encountered. Have yet to have full colonoscopy because started a significant flare when my baby was about 6 weeks old, and am just coming out of the flare now. Full colonoscopy is set for August (now there's something to look forward to!). I am a kindergarten teacher, and I truly love what I do. I am also the very proud mommy of 2 beautiful girls (aged 2 years and 5 months). Married to a wonderful and very supportive husband (he definitely didn't sign up for this, but has been amazing). So, as hard as this diagnosis has been, I'm really very lucky! Just found this site recently, and am very glad I did. I've already learned so much from so many of you!
Posted 6/15/2008 9:01 AM (GMT 0)
Hi my name is Anna,
I'm a forty years old I was diagnosed with UC last year while pregnant with my third child I'd had no symptoms previously,My baby is now 9 months old and basically nothing has really worked yet,I've been offered surgery or infliximab,I feel so sorry for all the younger people,posting on this site,its a horrible condition for anyone to cope with but i think it must be terribly hard for teenagers and young people The only thing I can think of thats worse than having it myself would be the idea one of my children suffering with it.
Pre UC I was an artist, teacher,mother,generally a nice person, I still hoping against hope that one day I'll be back to my old self but it seems to be a long slow road!
All the best everyone no one understands like you guys
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