Painfully shy

[Kimbercules]

Hello. I've never joined a forum before and I am very shy but I need someone to talk to whose not indifferent or in denial so please bare with me.

I was diagnosed with Crohn's disease yesterday after dealing with symptoms since February. I also have a fistula which has caused two abscesses to form in my female area, one that has already been drained and was originally misdiagnosed as a bacterial infection at the E.R. I'm currently taking antibiotics for the second abscess because my doctor wants to avoid surgery if we can but if it does not get any better by tomorrow, I will have to have it drained as well.

I have had a few frustrating experiences on top of suffering through this pain, such as the E.R giving me an antibiotic that had penicillin even after I told them SEVERAL times that I was allergic. Oh yes, itchy hives and severe stomach pain on top of terrible painful diarrhea and a painful abscess is exactly what I needed. But stupid me took the pills without researching their contents first.
Oh well, live and learn.
The Dr. prescribed me Pentasa but my insurance doesn't cover it or ANY of the other mesaline (or however it's spelled) medications so I'll have to pay hundreds a month which I cannot afford. I don't even know what I'm going to do.

Sorry if I'm going on too much, I'm just very frustrated. Which brings me to why I joined this forum, I've been very depressed and I know my case isn't so bad but I guess I'm just having a hard time coping with it all. I was never very good at dealing with stress. I had to cancel my wedding due to being unable to do, well anything, and the medical bills made it impossible to afford it. My fiance really tries to be here for me but it has been hard on him too. My father is in denial and keeps insisting that the Dr is wrong and that antibiotics will make me better. My mom has her own medical problems right now so it hard for her to help me, emotionally and otherwise.

Again, sorry for rambling but that's my sob story. I left out alot of details, otherwise I would end up writing a novel on here. Thank you for reading.

 

[Daisy123]

So sorry you are having a bad time. I am from the UK and am on Pentsa, but we don't have to pay with the exception of a small prescription charge. I consider myself very lucky. I thought there were generic mescaline available in the US, but others can advise. It takes time to come to terms with the diagnosis, be kind to yourself but don't let the illness define yourself or change your life. I would think about planning your wedding for next year, give yourself a goal! It does get better, but is a matter of getting the right treatment. I understand that biologics have had a good success with abscesses and fistula. You might want to ask about them. :ghug:

 

[mama21princess]

I'm sorry for everything you are going through, but glad you got up the courage to join us. You definitely came to the right place. You might want to look into Shire's patient assistance program. Go to www.shirecares.com. I qualified, and was able to get Lialda (which is another mesalamine) for free. I think they might have a program for Pentasa, too. Big hugs to you!

 

[wildbill_52280]

the proper word for shy is called anxiety disorder. but everybody is a little fearful from time to time.

 

[valleysangel92]

Hello there welcome to the forum

There's nothing wrong with being shy, I used to be very shy myself but I think having crohns has brought me out of myself in a strange way, since it has made me have to stand up for myself and deal with things I never thought I could.

This can be a difficult diagnosis to come to terms with and people react in many different ways. Give yourself and those around you time to get things straight, be patient with yourself and remember that we are here to help you.

Do some research, we have a wiki section which is full of helpful information about crohns and the symptoms and treatment options. Another good place to look is the Crohns and Colitis Foundation (CCFA). Stay on trusted sites though, remember that the interenet is a wonderful thing, but that it can be misleading and Dr google can misdiagnose a lot. Its good to remember that there are more scary stories than good because in general, people who are very sick or scared will post more than people who are well and enjoying life.

Don't blame yourself for the mess up with the medication, in retrospect it's easy to say you should have checked the meds first, but so should the hospital, if you'd been given them through an IV then you would have had no way of knowing what was in it. We trust the doctors to care for us, its no surprise that we often take their word as true. Just remember to make sure that you understand everything and question them as much as you need, you can come and ask us if you don't think something is right too, although we sometimes have no answer we will always do our best and at the very least we can support you.

 

[Orchid]

Unless you're a clinician "mild" Crohn's Disease is gibberish and I wish they'd phase out the terminology in patient oriented information. It evokes comparisons to a "mild" cold or a stomach bug in the patients mind. I think more accurate terminology for Crohn's Disease would be "not currently stuffing you in a woochipper" (remission) and " actively stuffing you in a woodchipper" (not in remission) but I guess there's a reason I didn't go to med school. You're very sick and you should stop fretting about the words used to describe it's severity. Focus on getting better, other people have already given you excellent resources to try and help you pay for the medication and there's always someone here to listen. I hope and pray you improve.

 

[Kimbercules]

Thank you all for responding, truthfully, I'm still very anxious about replying but your kindness and helpfulness make it a bit easier.
I'm using my phone to reply so I'm not sure if I'm doing this right.


Mama21princess, thank you very much for the link and info, I will see if I qualify.

Wildbill_52280, you're right but I'm used to saying that I'm extremely shy because usually if I say I have anxiety or anxiety disorder people criticize that it's only shyness because I haven't had a doctor tell me it's anxiety disorder. So I try to avoid the confrontation.

Valleysangel92, Thank you for welcoming me and I have also came out of my shell a bit since before I was too shy to go to the doctor and right now I am more than willing. Although, I still get very nervous and anxious, I am becoming a little braver.
I try to be patient with my family because I know it affects them too. I suppose I'm just frustrated, particularly with my father because it seems that he doesn't trust doctors at all. I will try even harder to be patient and forgiving though.
The antibiotic was given to me as a pill in the ER. I asked what it was and nurse told me, but the name escapes me right now.