New, My story

[Manatey]

I hope not to babble too much. It is the middle of the night and I can not sleep. So sorry if I go on too much.

I will be 40 next month. I was diagnosed with CD 10 years ago. After about 10 years of being told I was crazy and there was nothing wrong with me. I usually have flares every 8 to 12 months. Usually a course of Prednisone, and antibiotic and a change in maint meds does the job for a while. I have been on all the oral maint meds and Remacade, Humira and Cemzia being my most recent. My latest flare started in Aug of 2011. We started the normal stuff to get it under control and when trying to wean to prednisone as we normally do, every time I got below 25 mg my symptoms would get worse along with my inflammation levels.

To add insult to injury, I have had the same GI doc since I was diagnosed and I love him. BUT I work for a hospital and have to use their docs. My Gi left the hospital I work for so now I can no longer see him. I tried getting an appointment with the "crohns" specialist GI in the only GI practice at our hospital now. I called on Dec 8th, they could not get me in to see him until Feb 22 even knowing I was having problems. I work for a specialist and I know there can be a waiting list but if we have a severe patient who needs to get in we get them in. My PCP called the Dr directly and still he could not get me in sooner. My PCP tried to treat me to the best of her ability but she is no specialist. Basically she just raised my prednisone back up to 40 mg a day.

I started having random muscle pain, along with my normal stomach/crohns symptoms. I have pretty regular joint pain but never muscle pain. With all of the pains, not being able to eat and being on up to 40 mg of prednisone a day for 6 months I was loosing it. I was on vicodin which didn't do much anyway but I couldn't take it at work and it wired me so if I took it at night I didn't sleep. Finally the end of January my PCP called the new specialist again and pleaded with him to see me after explaining all that was going on. The specialist called me at home and took a history over the phone and decided there was nothing else they could do on an out patient basis anyway so he had my PCP admit me to the hospital. At least there I had morphine to keep me comfortable. After 7 days of IV steroids and antibiotics and such they tried to do a colonoscopy and stop basically before they started. They were afraid they would rupture something because of the inflammation. I have had may of these and never had this problem.

So here I am now the steroids have stopped working but they wont let me stop them because my body is dependent on them now. I guess they are making it so it is not getting worse because everything is at a stand still. Now we are waiting on insurance to approve Remacade. It has been ten years since I have been on in and they are hoping my body will respond to it again. They are also going to start me on weekly methotrexate injections. They say that helps Keep you from becoming immune to the Remicade. In the mean time, I am on bed rest in jeopardy of loosing my job, which normally I would not care but I have been there a long time and love what I do not to mention I carry the insurance for our family and we can not make it without ( I have a special needs son). I am living on prednisone and percocet which I have never required a pain med like this before. The pain I am having from my crohns is there but I have lived through that for a long time. The muscle pain I am having is so bad I can hardly walk at times. They say that is from the long term/high dose of steroids and will not get better until they lower the dose. Not to mention I sweat all the time! Steroids have always made me have hot flashes here and there but I walk around in a tank top and shorts and an constantly sweating. I wake up with my shirt and my hair soaking wet. Its a minor symptom I know but I am just frustrated at this point.

Anyway, you all look like caring people on here. I am very frustrated and just needed some where to vent! Thanks for taking the time to read my babbling

 

[Angrybird]

Hello Manatey and :welcome: to the forum. I sorry that you are having such a hard time of things :hug: Fingers crossed you soon get the remicade approval so things can hopefully improve for you and perhaps it can help with getting you off the steroids, out of interest why was it stopped before?

With regards to you job, I think your laws are the same as ours in the UK and your not allowed to be fired/descriminated against because you have a long term illness that is flaring up. Crohns is classed as a disability here and is covered by a descrimintation act and I do believe there is something similar that you should be 'covered' by in the US and this means your employer does have to make allowances for you so please check into this.

I really do hope you can feel better soon hun, keep us updated on how you are getting on.

xxx

NB I too had issues with the pred and hot flushes/sweating which was really getting to me as I just felt stinky all the time this has gotten better with the lower dose I have managed to acheive.

 

[Manatey]

They stopped the Remicade before because I had a treatment and two days later ended up in the hospital having a resection. The Dr felt like it was helping the symptoms but I had become immune to it so it was not helping the disease anymore. They said it masked my symptoms so I did not know how bad the inflammation actually was so I was totally obstructed. They are hoping after 9 years my body does not have the immunity it built up before. As far as my job goes. Yes we have the laws that protect us but because of my Crohns I have only been able to work part time for years. My company has leave for part time people but it only gives you 8 weeks per year. Being that I spent the last 6 weeks between the hospital, total colon rest, steriods, and now the last 2 weeks waiting on approval for meds, my time is running out.

 

[Angrybird]

How much do they know about your illness and what type of their employer are they? Could you perhaps set up a meeting with them to discuss a way to keep your job past the 8 weeks or it is a case you keep it but then have to be on unpaid leave?

 

[CLynn]

So sorry to hear what a difficult time it's been for you, Manatey. Will keep you in my prayers that you get so much needed relief soon.

 

[Manatey]

I have spent most of the day on the phone. My office manager and the doctor I work for are very willing to work with me. We are trying to figure it all out. But because we are owned by the hospital, HR is hard to get around. I have worked for this company for 10 years and will be devistated if we can't work it out! But they are trying to figure out ways around the "corprate laws"

 

[CLynn]

One of the many frustrations we run into, hmm? As if just having Crohn's isn't bad enough, we have to fight for treatments, our jobs, etc, just what we need, MORE STRESS! Glad your office manager is sympathetic. That's a fantastic thing.

 

[Angrybird]

Oh I do hope something can be sorted for you, above all else the hospital should be more understanding that many others considering what they are here for!

 

[Manatey]

ya you would think a hospital would understand. They no longer offer intermittant leave to part time employees either which makes no since. I have to take a week off at a time in order to have it considered leave. I used to take a day off when needed. Now I push through it and it usually ends me up in the hospital. It really frustrates me because I love my job and love what I do. It is one of the things that keeps me going and motivates me to get out of bed some days.

 

[SuzInVa]

Hi, I'm recently diagnosed and very new to these boards but just wanted to say that I'm sorry you're having such a difficult time and I hope that things go better for you soon! Lord knows, the last thing you need is all this stress. I've had leukemia for years and I've found that periodic venting is good for the soul, so vent away.

Good luck,
Suzanne

 

[Manatey]

I have been more stressed about my job but I guess my main concern should be what is going to happen when I finally get the approval for the treatment and it doesn't help. The doctors feel like I have tried everything and they are running out of options. It really scares me to think that there is a possibility that I won't be able to work anymore. The GI at the hospital repeated time after time every time she was in my room how severe my Crohns was. I just kept telling her I understand it is severe. FIX IT! Get it under control so I can get back to life!

And thanks for understanding my need for venting!