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I figured it was time to reach out to a community of people who would understand what im going through. I was told on wednesday that my body has built antibodies to the Humria. Last year i was told that my body had built antibodies to Remicade as well, which led to having a surgery. I've also tired pentasa and Azathioprine, along with some steroids. My body doesnt also absorb vitamin B12 or D. I go to the Va for health care and my doctor has to get approval for me to be able to try the newer meds that are out. Im in constant pain, i cant sleep, losing weight and just genuinely feel defeated and want to give up.  i'm a disabled vet, i have no other health insurance besides the VA and i don't work. So if theres anyone out there dealing with the same stuff i would love some adivce on how to get through this without giving up.

Reply posted for Tamsyn.

Hi Tamsyn, I can relate with you. I was diagnosed with Crohn's in 2006 and have yet to have a remission. Although my symptoms have improved overall, I am far from where I hoped to be 13 years later. I am less hopeful with each new regimen I start... after the first dozen times without success, being optimistic is a very tough task. Crohn's has eaten away at my quality of life. I have been on 5-ASA in various forms, sulfasalizine, Entocort, Prednisone, mercaptopurine, Humira, methotrexate, and Remicade. 5-ASA did nothing at all, nor did sulfasalizine. I requested trying Humira which did help a bit in the beginning. Eventually I was taking a shot every 5 days instead of 14. Then I went to Remicade and over the last year and a half, I have gone from 5mg/kg every 8 weeks to 10mg/kg every 6 weeks. I've also been on methotrexate 25mg injections weekly for a year, and added sulfasalizine back hoping it may help the joint issues if not the Crohn's too. It's very disheartening, BUT... even though my life isn't what I hoped it would be, I have been learning to hope for new things that are attainable. Sure there are things I can't do like I used to, but instead of trying to get back to how I used to be and do the things I used to do, I'm making it about who I can learn to be and finding enjoyment in what I can do now.

Reply posted for Tamsyn.

Hi Tamsyn,

I wish I could send you one of those cute kitten posters with a “hang in there” slogan.

I’ve had ups and downs too, but would encourage not to lose hope. I’m no expert, but it seems the medication for IBD is continuing to develop.  I’m not sure where in the world you are, but here in Australia the public hospital system often is involved in trials of new medications.  

If I were you I’d have a look around for info about any trials nearby you that you may be able to get into. Is there an IBD association in your area? Here in Australia we have the 

Crohns and Colitis Australia (1800138029) and they have a support line where they can inform people about what trials are running where.

I don’t know if this is useful for you, but I personally find it useful when I’m in a similar situation to find things I can do for myself, which gives me a bit more hope. Whether relaxing with hot packs and exploring meditation and guided healing tracks, or doing (manageable) yoga or stretching, or reading books on nutrition, or learning about energy medicine or reflexology, tapping the energy channels or giving reflexology foot massages, trying different pranayam (breath) techniques, to listening to uplifting music, drawing or creating, or just being in nature and watching the birds fly.

xxx

Reply posted for Tamsyn.

I was just diagnosed earlier this year in March. Started Remicade in April and by August my GI doctor doubled my 5mg/kg dose from every 8 weeks to every 4. At first my body was complient to the increased dosing, but now I feel its loosing its potency again. My flare ups occur once a week now where I feel bloated and obstructed and almost feel like vomiting, and in addition I have minor cramping/unwanted movements and sounds of the gut occuring almost every day while awake. Sometimes I can have the unwanted movements occur at bedtime, but to remedy this I have a small electric heating pad that I turn on and place on my abdomen area at night. Sometimes I take an acid blocker like pepcid chewables, or gas-x chewables, and the symptoms does subside a bit. However sometimes the symptoms are just hard to mask at night and affects my ability to fall asleep. I tried taking sleep pills like Benadryl, Unisom, and even prescription Amitriptyline to help with sleep and pain though 10mg is the weakest dose. I too had to give up my job as an engineer, and I live off of disability and county Medicare/Medicaid which pays for majority of all medical related bills and I am thankful for that. I thought of giving up at some points also, but I am just hopeful that one of these treatments that exist for my Chron's (either medication or surgery) will eliminate most of the days that I feel these symptoms. I am just looking forward for the days where I spend less time in my bedroom, and more time outdoors doing stuff rather than laying around. Just have to be hopeful that something can come your way.