A Typical UC Story with a Happy Ending :)

I Have Ulcerative Colitis:

This, my readers, is the typical UC story.

I have had my share of tragedy; I lost my first son at my fifth month of pregnancy due to an all-out flare of UC and my body not being able to support a child and deal with the war that was going on in my colon. I have had my share of embarrassment; running out of my last class of 10th grade on the last day of school before summer break, with diarrhea running down my legs (of course I just HAD to wear shorts that day!) because I was too scared to ask to go to the bathroom AGAIN! I have had my share of humiliation; stopping on the side of the road to avoid going in my pants while my high school boyfriend looked out for cars; going camping with friends only to wander out in the middle of the night to do my duty and waking up in the morning to realize that I had not wandered far enough away…… I have had my share of family and friends who say that all I do is complain about my disease and obsess a bout it constantly. I have even been called a hypochondriac by a person who will remain anonymous even though she knows that I actually have things wrong with me! Not only ulcerative colitis but a related liver disease called Primary Sclerosing Cholangitis (which may or may not eventually kill me by giving me cirrhosis…thank God the odds are good! I have a 50/50 chance of THAT happening) and other non-related UC things. But this story has a happy ending! (at least for now) What started with one child dying has now gone into remission with another child being born. They say that being pregnant can either make your ulcerative colitis worse or sometimes, it can kick it into remission. I am happy to say that I am one of the lucky patients that was kicked into remission by the light of my life, my son. He has not known a world where his mother is constantly in pain, in the bathroom, or panicking because she is away from home and cannot find a bathroom at her time of need. I will need to be on medicatio n for the rest of my life, as I am sure you, reader, can relate. But at this moment in time, 1200 mg of Asacol, three times a day is doing the trick and hopefully will for a long time! I am writing this testimonial as proof that there is life after UC and that it is a happy life! While I do sometimes feel like a phony because I have not been sick in 6 years, I continue to see my GI for my yearly colonoscopies (someday I would like to get a tattoo on my rear that says “What’s up Doc?” for (excuse my pun) poops & giggles) and I will continue to frequent these support sights because the more you read about others’ experiences the more you feel understood. I didn’t have that understanding growing up with UC but I am hoping that by reading this, someone else who has just been diagnosed with this disease will get some hope out of my story. And please, if you take nothing else away from having one of the most humiliating diseases out there, learn to laugh at it and a t yourself because chances are, you will have someone looking at your butt for the rest of your life and that in and of itself, is amusing!


Asacol 1200 mg three times daily

-Written by Amber

Amber’s story is now entered into the 2011 Ulcerative Colitis Writing Contest!!! You Can Join too, click here for details

13 thoughts on “A Typical UC Story with a Happy Ending :)”

  1. Wow, you are an amazing woman. My hats off to you! You have such a positiv and uplifting attitude. I know its hard to always be that way, but you sure are the definition of positive energy.
    Good Luck with everthing.

  2. Such an encouraging story to read right now! Don’t feel bad at all that you haven’t had symptoms for 6 years, that’s AWESOME!!!

  3. Thank you so much for posting this. The birth of my daughter 4 years ago sent me into remission for a year. The birth of my son 3 months ago however sent me into massive flare. Do I regret having him? HEC NO!! Looking into his beautiful eyes makes me care less about my stupid colon. I’m so pleased you have you health and your life back and I’m tempted by your tatoo idea! Big love.

  4. Thanks all for the kind words! It has been a long road to being healthy but I have made it and with some luck will stay there for awhile! I have asked my GI several times if there are any accounts of people staying in remission for the rest of their lives and while he will never give me a straight answer I will continue to hope that I am one of those people :) I wish you all good health!

  5. My heart always hurt for you while you were growing up,because of all the embarrassment that you went thru in school.
    School is hard enough on children without the added pressure of having to try to make it to the bathroom before you have an accident.
    It broke my heart every time I saw you crying because another accident had occured in front of your friends.
    I tried to talk to you about it,but I always seemed to say the wrong thing to you,and like most men I have a hard time expressing what I’m feeling.

    Please know that I’m here for you,I always have been,weather you understood that or not.
    Your always in my prayers. Love you, dad

  6. Thanks for sharing Amber. I was diagnose with UC in September 2010, but had it in June 2010 (last month of my second pregnancy.) Looking back I might have had it for a while but my symptoms weren’t that severe. After my daughter was born my symptoms came back and I got really sick that I was in ICU.
    I hope someone will read this and know that they are not alone and there is someone they can talk to, email or make a comment on a blog.

  7. Hi Amber, Thank you for sharing your story. I’m only 23 and not quite ready to have a baby yet. But I am concerned about it in the future. Were you on any drugs while you were pregnant with either of your sons? My doctor has told me that when the day finally comes for me to have a child, that it will be best for me to stay on 6-MP and lialda (what I’m currently taking). He says that I’m better off on the drugs than having a flare during a pregnancy.

    1. Hi Sarah! With my first pregnancy I wasn’t even diagnosed yet so I was not on any meds. But with my son who lived, I was on meds the whole time I was pregnant. I was on Asacol and a med for my liver disease. The doctors said that the benefits definitely outweighed the negatives (although I was not able to breast feed after because of the meds). I was also put on calcium tablets and folic acid daily. I had ultra sounds regularly for the first 6 months of the pregnancy then I had weekly ultra sounds and stress tests after that. I was sent to a specialist in Rockford IL (the largest hospital around my area) around 5 months and they did bone scans on the baby and made sure that there wasn’t any defects to his skeletal system and that he was growing correctly. I have so many ultra sound pictures from my pregnancy that I can trace his growth and it is so neat to look back on them as not very many parents get a detailed gestation! I also had a scheduled C-Section because my colon is so damaged they were afraid I would perforate my bowels. Kyan is a healthy care free 5 year old today and according to the geneticist I saw, only has a 5-7% chance of getting UC! I will tell you though I was on bed rest for 4 months but I definitely will say that the end result was well worth it! Good Luck to you! And make sure when you do decide to get pregnant that the OB-GYN knows that you are a special case and that together you make up a detailed plan on how to make this pregnancy work and if he or she gives you any trouble, switch until you find one who takes you seriously! My first didn’t and if I would have not switched to another doctor, who knows what would have happened.

  8. Your story is encouraging. My daughter is hoping to get pregnant in the next year. She has had uc for 10 years already (she’s 26) and is on several meds including 6mp. We know she needs to get off these if she is to get pregnant but is finding it hard to get the support she needs from her gi as they are afraid she will have a flareup. I am frightened for her, but encouraged by people like you and the others above who have children and know that this is what quality of life is all about. Sarah, read your posts also and we too are searching for the answers…so happy to have found this sight for my girl.

    1. Hi Julie, what did your daughter and her doctors finally decide to do in order for both her and the baby to have a safe pregnancy? Did she stay on 6-MP or any other drugs?

  9. I have both UC and PSC myself I was diagnosed when I was 16 (now 19) This story has shown me that I am not the only one with these problems. 19 years old and not being able to reach a restroom in time makes me feel like I am not ready to take on more responsibility’s and It is even more rough at college but I am getting through. the part that caught my attention (and gave me a laugh) was “someday I would like to get a tattoo on my rear that says “What’s up Doc?” for (excuse my pun” I am not even sure if someone with PSC can get a tattoo safely. I have wanted one for a while now but am not sure if anyone would even touch me because I have a liver disease.

  10. Hey JJ – I have never heard that you can’t get tattoos when you have liver disease. Personally, I have 6 tattoos but I did get 4 of those before I was even diagnosed with PSC at 21(I guess I went through a crazy stage between 18-20 lol) I have never had a problem with any of them. I will have to look it up though.

    Good luck to you being in college. I went to college and lived in the dorms all the while having active UC and I somehow made it through :) What really kept me going is that I didn’t know I was supposed to live life any different. What I mean was it never occurred to me that I shouldn’t do something because of my disease. I won’t lie, it was hard and I would constantly weep with shame every time I had an accident, but I refused to let it keep me down. That being said I always had a game plan and knew where practically every bathroom on campus was! And I always carried a change of underwear in my backpack. Somehow, just knowing that they were available always gave me a little peace.

    I wish you luck and good health!

  11. Wow, this was just the thing I needed to read right now. I too have PSC (possibly an Autoimmune Hepatitis overlap also) and an IBD. They can’t tell me if it’s UC or Crohns, or something called Crohns Colitis because I have inflammation in so many different areas. I was just diagnosed with all of this within the past month. One of my first questions to the Dr. was if I can have more children. I already have two beautiful boys (4 and 1 1/2) but had always planned on having one or two more. And I don’t want this/these diseases to run my life and keep me from expanding my family. I truly loved reading your story and it really did give me hope–which I need a lot of right now. Thanks so much.

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