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What's Up Wednesday - How Would You Finish This Sentance?
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Elizabeth_WebMD_Staff posted:

"When I found out I had Crohn's/Colitis I .........."

How did you feel, what were your thoughts? Shock, disbelief? Relief of finally finding an answer to what is making me so miserable?

Elizabeth
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miserable_sob responded:
In my days back in the mid 80's when I learned I had Ulcerative Colitis it was all new to me. I never heard of it at the time. I also happened to be recovering from a severe head injury at the time too. Between that and the Colitis, everything just hit me so fast I didn't have time to think about it.
 
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arbob5 responded:
I was kind of glad to have a dx of any kind, although I didn't know too much about UC at the time. I had been sick most of the summer of 2008 and a colonoscopy in Nov. of that year showed the UC. After the dx, it was a matter of my GI finding the right combo of meds. That took awhile too, many flares, and discomfort, but we finally found the meds that have helped me tremendously.

I feel very fortunate too, because I know so many Crohns/UC patients are in so much more discomfort than I could ever imagine. But I also know how unpredictable UC can be, so I can flare up at any time and my meds combo will no longer do the trick for me.

But, so far so good, and I've got to remember that. And I thank God for that everyday and only hope that all of you out there with Crohns/UC can also be so fortunate. Love you all!
 
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JavaMamma27 responded:
I was told after my colonoscopy as I was waking up, and it really didn't phase me. 6 days later at my GI appt when my GI was talking about the mechanics of it, the medicaitons, the long term-prognosis I was SHOCKED. I was crying on the way out of the office. I sobbed in the car on the way home. When I heard "immunosupressant" drugs I was DEVISTATED. I struggled to stay healthy with them, and felt like my dreams were crushed. I was planning on nursing school, but if I can't fight infection, how can I be a nurse?? I cried all day. I cried for days. Then I got ANGRY. And as I jkept having flares, and pain, I felt CHEATED by life. Then my back was giving me issues b.c I can't take NSAIDS for it. Then I felt DEFEATED. Then after 2 hospitalizations, 2 colds, an ear infection, and sinus infection all on Humira, I just feel DEPRESSED and HOPELESS. Everyday is a struggle right now.

I have still not made peace with the dx. I still feel like my life was stolen from me. I will be 31 next month. I can't keep up with my kids, my home, my friends, my job. It has been nearly a year since I have had a night out with the girls or a date with my husband. I have not been able to take my kids to the zoo or museum. I go from test to Dr appt, to test, to hospital, to Dr appt. I have no life anymore.

I am still very upset with all of this. The financial burden is overwhelming. I am now at 40K I can't pay with no end in sight. No idea how I will pay for surgery or a surgeon. But if I can't get that done, I can't get better.

I feel like this disease has ruined my my life.
 
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cook1958 responded:
I was so glad that after 2years my illness finally had a name and we could start treating it, and it wasn't just "stress".
 
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mattdamonishot replied to cook1958's response:
was not surprised. I had been researching my symptoms and thought that was what i had. I feel cheated as my kids are little and I can't do alot of things with them since I am sick alot. Now I am on Remicade and have high hopes that this will do the trick!!!!!
 
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hannahleigh89 replied to JavaMamma27's response:
I'm also on immunosuppressants and I have been for 5 or 6 years now. I'm still planning on doing nursing school, and perhaps medical school after that. You can't let it defeat you. Right now, you need to just take it easy and get as close to healthy as you can, because you've been put through the ringer, but do not let it take your dreams from you. You have IBD. It does not have you.

Just wear gloves, wash your hands a lot, and wear a mask if necessary. If it's still what you want, I think it's important that you not give up on it.
 
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hannahleigh89 responded:
Terrified. I was first misdiagnosed with Ulcerative Colitis (after a while of being sick and not knowing why) because my brother and father were previously diagnosed with it. Then a year or so later, it was diagnosed as Crohn's and I was heartbroken. UC can be cured with surgery, Crohn's can't. It's switched between UC and Crohn's over the last 7 years, until recently the doctors have decided to go with Crohn's Colitis.

I'm dealing with it much better now. The idea of being unable to get pregnant due to scar tissue or other issues from abdominal surgery or having to have it aborted if I do get pregnant because of methotrexate is also terrifying to me. I'm hoping to be able to come off of it at some point to try to have children, but we'll just have to see how it goes. Also, giving myself shots weekly (B12 twice a month, Humira twice a month, and methotrexate weekly) isn't much fun, and thinking about having to do that forever along with the hand fulls of pills I have to take makes it harder to swallow. But you do what you have to do to get through it. Some days are better than others.
 
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OyWithThePoodlesAlready responded:
The first time I heard it I was mad at the stupidity of it - you mean my immune system has decided to nom on my intestine? seriously? Not -gave it its best shot and failed- but is actually attacking me? That's infuriatingly stupid...

it was just a "probably dx" back then... 5 years down the road I was shocked I finally had a real dx - it'd been 11 year without one - but I knew it was a possibility... There was some relief to have an answer, but it was not the answer I'd wanted... I've spent the past year hating the idea of the serious meds involved, but I think I've finally decided its something I just have to try, so I've gotten my ppd done and I'm on the road towards trying remicade
 
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peacefulgurl replied to JavaMamma27's response:
I Understand what you are saying JavaMamma27. I was also told right out of my colonoscopy/endoscopy. I was still in twilight mode and was NOT expecting that diagnosis. I have been diagnosed for about a year now and I started on 6MP and then had to go to Remicaide.

I had the same thought that you did about being more susceptible to illness. I work with children in a shelter setting. I thought, How can I do my job? How can I stay healthy when in this environment? I was scared and angry with this life changing disease. In response to those feelings I have tried to make my body as healthy as possible. After coming off a very painful flair that lasted about 2 1/2 months I have completely changed my diet (within reason) and have been doing acupuncture for the past 6 months which has helped tremendously. I have managed to ward off cold/flu and some nasty stomach bugs. So if you want to go into nursing you do it.
 
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jaimem92 replied to hannahleigh89's response:
I agree with you Hannah- working in the medical field is totally possible even if you're on immunosuppressants.. You just have to be slightly paranoid about germs. haha. Always wash your hands and always wear a mask even if the person just has a cough.

I was relieved to get a diagnosis, I was sick of people telling me it was nothing. Or to stop stressing myself out so much. Or eat better. I've been doing better now, I have pain everyday, but switching to a gluten free diet and taking my vitamins and probiotics have really helped. I think one thing we forget, is that stress makes our disease worse... SO we need to try and stay on the positive side. Dwelling on all of it doesn't help anything, it just makes it worse. Maybe not the easiest advice, but you have to admit it's true.
 
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Elizabeth_WebMD_Staff responded:
Our WebMD Crohn's & Colitis Community is one of our favorite communities, your honesty in your responses is one of the reasons why.

I wanted to leave this post up a little longer than usual, so, as many of our members as possible would be able to share their thoughts and stories.

Elizabeth


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