I feel so helpless

[thunderbear]

My husband of 11 years was diagnosed with Crohns 7-8 years ago. He has been in a perpetual flare ever since. With mabye 3-4 months a year of low to no symptoms. I have depression & anxiety & diagnosed hypochondria disorder. It is so hard watching him struggle & explain to his family it is not "just a stomach ache". He has recently slipped into depression. He talks about how he is so tired of being tired & sick & in pain. I listen and try to understand but I cant understand. He used to be so optimistic and happy. But now he is dark & says things like " if it wasnt for you and our son i would end it". I cry everynight or anytime hes not around because the pain it causes me to see him go thru this disease absolutley tears me up. And all the ER visits & abnormal labs get my hypochondria going. I try to never cry in front of him. I dont want him to feel like a burden. Yes its hard dealing with him sometimes but he is never a burden. I feel like all my coddling & listening isnt helping but thats all I can do. His family are total a-holes about it. Theyve called him lazy and when he lost weight they accused him of doung drugs. They are impatient & at times downright mean. Im pretty much all he has & I feel so alone in this. No one understands his pain or mine. I just dont know what to do anymore. Im at my wits end. Somtimes I dont feel like being the sunny glass half full person. I just want to scream and cry. I get pissed at his doctors for not treating the disease right. We have no insurance so they give us the most basic care. Ugh I feel sick ro my stomach :'(

 

[Dobermonster]

I'm so sorry that you and your husband are going through hell. Depression plus Crohn's can leave a person in utter despair, and it's impossible to imagine any end to the madness at those times. I don't know if you're looking for advice, or words of encouragement, or maybe just the opportunity to vent your frustrations, but I think this is a good place to come to for any or all of the above. I really hope that you both are getting some emotional support somewhere - whether counselling, or medical help, or even just some good friends. Don't be brave, don't try to get through this alone. Scream and cry. Share your grief. And find some island of happiness, something that will give you joy and peace and a rest when you need it. Cut out the negative people, the ones who tear you down and mock your shared pain. Even if they're family, they aren't worth it.

Don't know if you've been in contact with any support groups, but I found these:
http://www.ccfa.org/chapters/kentucky/#groups
Maybe they can help, maybe not, but either way I hope you'll stay in contact here. Online support is better than none, and might just give you the strength to carry on. Please feel free to message me if you feel up to it.

Take care

 

[tots]

Look in your local paper for a support grp for people with cronic illnesses. Your larger hospitals or I have also seen them at local Jewish Ctrs. Its always worth a try- for both of you.

Lauren

 

[Jennifer]

When you feel ready let's try talking insurance cause I know how hard it is to get treatment without it here in the US (share what insurances you've tried for in the past and why it didn't work and we can go from there, also share where/how he currently gets treatment). He's gone too long with improper treatment and you guys deserve better. Its hard to lift another person's spirits when yours are crushed as well so we gotta start working on some positives to try and lift both of your spirits up. At least lift yours and then you can help him a little better because we can't be fake all the time about how we feel. It feels empty on both ends. You can be honest and strong at the same time. You know him best so take heart in knowing that he wont actually harm himself.

I agree that you should stay clear of the negative people for now and try to focus and try to get his health back on track. Its far more important. Then once he's feeling better he'll be more able to help you feel better as well.

 

[thunderbear]

Thanks you guys. I looked onto the Ky chapter of Crohns support but he said he dont want to meet people face to face (his family has him so self concieus about his looks. They always tell him he looks bad cuz hes skinny) but he did stay on here till 2am. He thought he was the only on with the burning eyes. I hope he can eventually talk on here. He did seem in a better mood after readng others posts about living with CD . As fas as insurance goes we was on Anthem for a long time then he got too sick to work that job so we have been on Medicaid. And they dont do squat. The just give him asacol & prednisone. The asacol makes him very nausous & the pred ate up his joints and teeth and it causes mood changes. But thats all they ever want to give him. Ive heard really good things about remicade but we cant afford it.

 

[Jennifer]

Any chance of seeing a new GI doc? You usually have to get another referral from you General Practitioner. You need a doctor that's more proactive and fights for the medication he needs (if medication will help at this point cause he may be dealing with a lot of scar tissue and no medication is going to help with that, only reduce inflammation that causes more scarring). I'm on Medi-Cal which is essentially the same thing as Medicaid. Whenever my doctors aren't doing enough I'm able to see a new doc (even GP). Not everyone accepts these insurances but there are some that do. I'm currently on 6MP and Entocort (a stronger version of steroid than Prednisone but with less side effects). Medi-Cal pays for both and my GI mentioned that if these don't work then I may have to go on Humira. He may need a medication than suppresses his immune system on top of meds that reduce inflammation. Do you guys know if he's dealing with a lot of inflammation or scar tissue or both? Even if no inflammation is present the scar tissue also prevents absorption of nutrients.

Since he isn't working is he getting SSI or SSDI for income? If you need info on that check out Social Security's website here: http://www.ssa.gov/disability/

They go by this definition to see who qualifies: http://www.crohnsforum.com/wiki/Disability-and-Crohns-USA He doesn't have to be on it forever either.

 

[thunderbear]

Thanks Crabby. When he went to the hopsital this last time his lymphocytes were a little low (they were at a 9 the range is 10-46) the doc wasnt concerned about but he didnt want to put him on steroids until he got rid of the bacterial infection. Usually salumederol helps the inflamation. They are treating it with Cipro & Flagyl. Hopefull one we get the bacterial infection gone & his lymph back to 10 the doc will do pred again. RC's (my husband) cousin has CF and Entocort has been her life saver but the ER doc said its for Crons in the rectum & RCs is in the large intestines. As far as scarring goes, he does have thickening (same thing mabye) in two places in his large intestines and ulcers in his colon. His gastro ieves he has UC with CD. He wants to run another colonoscopy but RC always has severe inflamation in his intestines & doc worries about perforation. So we've been waiting for this latest flare to settle down first. About the ssdi he refuses to file. Its a pride thing. That and he says he wants to work as long as he can so itll be more a month on the ssdi.

 

[Jennifer]

He can work while receiving SSI and they even have programs to help you go back to work without it affecting your payments. Its just a suggestion for more financial help.

As for the Entocort, I take it and my Crohn's is located in the ileum and colon. It does work throughout the intestinal tract. http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000434/ ER docs aren't specialists and most I've come across are clueless when it comes to Crohn's and the meds for it.

 

[thunderbear]

Thanks. I didnt know that. Hes so stubborn he dont listen to anything I say. Im gonna tell him bout that in the morning. Theres nothing wrong with getting some fianacial help.

 

[Jennifer]

The hours/amount he can make are restricted. Talk to your local social security office about it (make an appointment as things will go by faster).