Family With Crohns

[Ombres]

Hello everyone,

I'm a mother of 3 boys and have been living ( if thats what you call it) with crohn's for 15 years now. I've had 2 small bowel resections and have taken every drug out there for it. My crohns was in remission for a long time and now is starting to flare up again.

The one doctor I was seeing and truly would scream his name from a mountain top to tell the world how great he is has left this area and moved to Decatur, AL ( if anyone in that area wants to know, contact me). The one I have been seeing lately pays no mind to what I say and ignores me fully.

My middle son Has crohns as well. I almost lost him to an abscess that I kept telling the doctors in the ER was there and his Gastro but they did not listen until he was on deaths door step. This young mans story is horrible. He had never been sick a day in his life, never been in a hospital other then to visit friends or family. Never had to deal with anything like this other than what he seen me go through. They tossed him in the hospital, dropped the bomb on him of surgery, watched him have a mental and emotional break down and told him to deal with it.

He has stopped going to see his doctor over all this.

We are both looking for a new Doctor at this time.

We live in Virginia Beach.

 

[Jennifer]

Hi and welcome to the forum!

Your family has been through a lot and I'm sorry to hear about you and your son. May I ask how old your son is? What medications have you and your son tried? There are a lot out there so its possible there's something you haven't tried yet.

There may be some members living in your area. Check out the forum map here: http://www.zeemaps.com/253605 found in this thread: http://www.crohnsforum.com/showthread.php?t=20514 and feel free to contact the members nearby to see if they have a good GI. My first one was 4 hours away from me so you may want to branch out a bit. A good GI is worth the trip.

Also check out the Pareant's of Kids with IBD section here: http://www.crohnsforum.com/forumdisplay.php?f=49 There are a lot of members on here who also have children with Crohn's and some who have Crohn's themselves. Even if your son is all grown up its still a great resource for information and support.

 

[mikeyarmo]

Welcome to the forum Ombres!

I am sorry to hear that your Crohn's Disease is starting to flare up again. I am also sorry to hear about the trouble you and your son have experienced with the new doctors. It is important to feel comfortable with the doctor you are seeing to feel comfortable about how your condition is being managed and treated. Have you asked your former doctor for a recommendation? You might be able to phone them and get a fairly quick answer and maybe even a referral.

Crohn's Forum has its very own IBD Doctor Directory. You may want to check it out to see if there are any well rated doctors near you. You may also want to leave a review for your former doctor so others can know how great they are.

Good luck to you and your son in managing your conditions and finding a new doctor.

 

[Ombres]

Thank you both for such a nice reply.

I hate to say it but I could write a horror story or atleast a good drama on our lives with CD. I missed out on a great deal of my kids lives while I was really sick in the beginning, had a marriage ruined and I've died several times and was brought back, once by my middle son which was forced to grow up fast to help take care of me.

I have been on (forgive spelling if I mess them up) Asacal, Imuran, Prednisone, Entrocort, and I have done the Remicade infusions. There are still some I can't remember the names too that I took years ago. At this time Asacal, Imuran and Entrocort are the ones my son and I are being treated with.

Not sure how much longer we can keep taking these as our insurance stopped after my divorce. I am looking into more but on just my income alone it won't be easy.

My middle son is 23 yrs old now and his career has been stopped thanks to Crohn's. No company will hire him now because the crohns is so active.

 

[Jennifer]

In all honesty you and your son may want to look into getting on Medicaid and possibly check out your options for getting SSI and/or SSDI through Social Security (I receive SSI for Crohn's and get Medi-Cal (California's version of Medicaid). It pays for everything). Contact your local Social Security office or even start applying online through their website. It can take a long time to get accepted and being in the US we need health insurance, so the sooner you get the ball rolling the sooner you'll have the coverage you both need. Don't have to stay on it forever either and they do have programs on helping you get back to work (or school even).

 

[David]

Hi there and welcome to the community.

Ugh, I'm so sorry you and your son are having a tough time of it right now I'm glad you're shopping for a new doctor if you don't like your current one. Finding a good GI you click with is so important.

When dosage of Imuran are the two of you on? And have you ever looked into Low Dose Naltrexone?

All my best to both of you.

 

[Ombres]

Crabby, We have been turned down for any help through Social service and social security. Here in VA, Crohns does not get you help it seems. I will keep fighting for it.

David, I am on 10 mg twice daily of Imuran and my son is up to 25 mg twice daily. I had a bad reaction to Naltrexone and my son has ot taken it yet.

The latest med this "quacky" doctor put me on is Colestipal. It's helping as far as keeping me out the bathroom so much.

 

[amien]

Hi,

so sorry to hear about your son and your troubles, the suffering we go through is tremendous, but at the end of the day these down moments in our lives shape us into extraordinary people.


i had the same experience with insurance when my father was in between jobs, no one would cover me because i had "pre existing cond" and for me to apply for the ca program for people with pre existing cond, i had to be uninsured for 6 months!!! well thankgod my fathers new job insurance kicked in fast.

anyways, regarding imuran, i was on 6mp for 8 years 50mg nightly put me in complete remission those 8 years, ive never taken it lower than that or split the dose though. i stopped because of liver problems and possible skin cancer/moles and other problems.

interesting to hear you had a bad reaction to naltrexone, what dosage did you start at?

 

[Jennifer]

Crabby, We have been turned down for any help through Social service and social security. Here in VA, Crohns does not get you help it seems. I will keep fighting for it.

The Americans with Disabilities Act was changed in 2008 http://www.crohnsforum.com/wiki/Disability-and-Crohns-USA (look under 2B). IBD does qualify as it affects the bowel and can also be related to the immune system.

What you may need to do is get a lawyer to help with your case. That's what many people have to do and you don't pay the lawyer until they win your case. They also only take a percentage of your winnings (from when you first applied) which is a large lump sum so getting a lawyer definitely pays off.

 

[Ombres]

Amien, I don't remember the dose I started on but the doctor kept changing it.

Crabby, thank you for this information. Every bit helps. I will be calling a lawyer for my son and myself.

Imuran has caused some skin issues for me thats why I am on Entocort and being slowly taken off Imuran.

The Remicade infusions work great and it was like I didn't have crohns. The big problem is it cost so much. I do know there are knew meds being tested and we are looking into joining test groups but I can't do many of them thanks to having 2 surgeries already and missing so much of my intestine.

I have appointments set up with a new doctor for both of us for next week. This is just a consalt to meet him.

 

[David]

That's unfortunate you had a bad reaction to LDN. Who put you on it (your GI?) and what was the specific reaction if you don't mind me asking?

 

[Ombres]

David the reaction I had was a rash from head to toe that made my eczyma bad and the dizziness was horrible to the point I fell several times and broke my arm once.

 

[Ombres]

It's been a productive week. I managed to get my son and I into the GI doctors appointment on time. This new doctor seems to be nice and he even gave me a list of people to talk to as referances..lol. I got my SSDI paperwork done by a lawyer so maybe this time it will go through. Now if I can get my son to get his done, that would be great.

 

[David]

Thanks for the update! Best of luck with the SSDI going through.