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I was pretty much diagnosed with Crohn's disease a week ago. The doctor said that it really couldn't be anything else, but we will know from the biopsies. She started me on some antibiotics for a bacterial infection, and prednisone until we find a suitable Crohn's med.. But the first attempt was a flop, as the pentasa was going to cost me $800 a month.. Here's where the "alone and afraid" come in.. I am from NY, but moved to Ohio in August for grad school.. All of my family and friends are 8 hours away, and I'm all alone struggling with all of this. I'm 22, working on getting a Ph.D. in chemistry, and now ill all of the time. I don't want to believe that this is happening.. It can't be happening, I dream that the biopsies will show something else, or that I'll get a call saying "jk, just take another round of antibiotics and you'll be fine".. But I know that won't happen, I've had bleeding for over ten months now, and pain for five.. I know that whatever I have, isn't a simple problem. My week has been filled with tears, difficult phone calls, annoying phone calls, massive amounts of pain, and the struggle to find an affordable medication... The prednisone has me awake all of the time, while anemia makes me very weak and tired.. And because of the antibiotics I'm on, I can't take my iron supplements when I normally do.. This is a mess.. I guess I'm looking for a little support and some advice on how to really except that this is happening to me..

 Reply posted for tigerlily1017.

Please do not ever feel alone. I am a survivor, and you will be too. Colitis is not as life shattering as you might think. It is a very difficult, scary thing to work through, I understand that. I was diagnosed at 14 with uc and struggled for 2 years with massive flareups. At 16, my freshman year of highschool I had my worst. At the time I lived in the northern most city in Maine and my mother had to drive me 6 hours south to portland Maine where I spent 6 weeks in the hospital. About 2.5 weeks in I was rushed into emergency surgery and had to have a total colectomy. All the surgeons could save was my rectum. But I was alive. I lived for 3 years with an ostomy and during that time had 2 more surgeries to build and connect a j pouch. I want you to know if the pouch is an option for you please take it. My life improved a million times over. Now, to get to the important part of your post. I work in southern Maine now for a different hospital, but they have c&c support groups. Please talk to your local hospital and find out if they have any inflammatory bowel disease support groups. Many, many hospitals all over the country offer them, especially if the do the surgeries there. And if you, or anyone reading this have any questions, need to talk, vent, or just for support, please let me know. I've been there. I've had my j pouch for 16 years now and it's been a blessing. justdonovan01@gmail.com

 Reply posted for amymichelle819.

The closest support group in OH to me is about an hour away, and I don't drive.. So I'm stuck. All of my family is 8 hours away, and it's rough. They can't accurately diagnose me yet, as the biopsies they took came back inconclusive.. But my doctor is still leaning towards Crohn's, big time. She gave me about 2 and a half weeks worth of free pentasa samples, and we're working on getting it cheaper from Shire.. But the waiting game isn't doing much for my nerves.. So far the steroids have pushed my symptoms away for the most part.. Every day it gets better, then a day takes two steps back; but I guess that's common. 
I just wish some magical fairy would float along and bop me on the head and cure me of everything wrong within my body.. Crohn's isn't the only chronic, incurable condition I have. And a huge problem I'm facing right not is the fear that no one is ever going want to get close to me because I have so many problems that will make my body fail earlier in life. I'm sick of taking so many pills a day; and while my friends are supportive and don't mind me swallowing horse pills at the lunch table, I still feel slightly self conscious about it. Wake up, take pills. Eat lunch, take pills. Eat dinner, take pills. Going to bed? Oh here, take more pills... Will it ever stop? Is it ever possible to not need the medication with these illnesses? 
Or am I doomed to forever take as many pills as my great grandmother every day?

 Reply posted for tigerlily1017.

I feel our stories are very much alike. I was Dx with UC at 18 and now being 28 I have now been Dx with both UC and crohns. It's a lot to go through alone. I had the same problem with pentasa and was not able to afford it. I am now in the process of finding a new GI who will help me to find a medication that will work for me and my bank account. I am also in Ohio and recently looked into finding a support group through the CCFA website and the closest one was over 100 miles away. I am tryin to reach out to the CCFA to find a ways to have a support group closer to my town. Until then Keep your head up! There is always someone who knows what your going through. If you need someone to talk to we are all there for you!

 Reply posted for tigerlily1017.

Since you're in grad school, and under the age of 26, talk to your parents about getting covered by their health insurance policy. This will help a lot with medicine costs. Also look into things such as RemiStart <http://www.remistart.com/>, where drug companies will help you pay for the medicine. Also, look around on the CCFA site (it's changed a little bit since I first joined, so I don't recall where this is located) but they have a list of places, normally hospitals, that have support groups. Maybe you could go to one of the meetings and talk to people who have Crohn's will help. I know it sucks, I dreamt for a long time after I got diagnosed in 2010 that they would find out that it was a mistake and that I had something else. But don't worry, I pulled through and am feeling better now, and so will you! Keep Strong!

 Reply posted for tigerlily1017.

I am sorry you are going through a very difficult time. Crohn's & Colitis foundation has several chapters nationwide...maybe see if there is a support group in your area? It will get better with time, or at least less painful and manageable. Stay strong!!! (((hugs)))