Any ideas

[sandbox]

i have just recently been total i have crohns and i feel i have gotten worse since they found out i have crohns .. everytime i get seen at the er they send me home and my gi say it flair up and up my steriods but still in alot pain and spend most of my time in the bathroom .. im starting to get depressed and feel like nothing be done have seen a few other docs and they dont say much it some u have to live with but im limited due that i have no insurnce and got denied disablity .. idk what to do any help ?

 

[2thFairy]

I'm bumping this to get more exposure.

 

[mlockhurst]

Heya,

I have been living with this disease now for ten years, and believe me, it does get better! The best advice I can give to you is find a good Crohns Dr. I have been through a dozen, but finally after doing some online research, I am now seeing one of the top specialists in London UK. This makes so much of a difference to me, to have someone who understands what I am going through is so much better then seeing someone who just sees you as another face. Im guessing you live in America where health care is fantastically expensive? There must be groups or government support which will help you? If you can find a good Dr, you will save yourself stress, time and money! Do some online research and see what you can find out!

Though I have never been one to take the drugs, My happy remission time is over and I am now facing losing 15 cm of my colon. It is scary, and I have cried and cried, but take it one day at a time and I promise it will make you stronger. I am now on Humira as the inflixamab gave me a nasty allergic reaction. It hurts like hell and I am not convinced its doing much, but its time to take charge and control this thing. Inflixamab was amazing before the reaction, but again your looking at over 2000 per infusion. So again do your research to save yourself the hassle. Remember you are in charge of your body, dont let anyone tell you that you have to take something, do your research and find out what is right for you. Steriods are great, but a very short fix!

Good Luck! Stay positive!:thumright:

 

[Patricia56]

Can you get any kind of health insurance at all?

Have you applied for Medicaid separately from applying for disability? If not you should do that. sometimes you can get it even if you have been denied disability.

If you didn't appeal your disability denial and it's not too late, I would appeal that.

If it's too late to appeal, I would go online or to Social Security and apply for SSI again. If you have enough work history then apply for BOTH SSI and SSDI at the same time.

You need to get a doctor to prescribe you something longer acting than prednisone like 6-MP or methotrexate. The problem with that is that you also need regular blood tests with those drugs and regular (at least every 3-4 months) doctor visits for followup for at least the first year, if they work.

 

[highlandsrock]

Hi sandbox

Sorry to hear you are going through a bad time. I agree with what mlockhurst posted - it does get better. I've been a crohnie for 35 years and there have been some scary moments but the good times far outweigh the bad times.

The steroids are usually given as a short sharp shock to get the inflammation under control before getting you on a maintenance dose of a med that can be taken long term. Unfortunately it can take a little time for you to find the one that suits you. What works for one person may not work for someone else. Hopefully you will find the right one first time.

Good luck and keep posting, it really does help to know that others have been through what you are going through and can give you some help along the way

Regards, Nigel H

 

[xSophiexx]

Mlockhurst .. out of interest what top specialist do you see in London??

Sorry to hear you are feeling so bad sandbox but there are alot of people on here who will give you great advice. hope things start to get better for you!!