Newbie

[momonthepond]

Hi Everyone!

I was just diagnosed with Crohn's 2 weeks ago. I had a full hip replacement in Dec and it came on after 2 doses of strong antibiotics after 2 dental visits. I have not been right since. I have been on 4 antibiotics to try and get my system back in shape to absolutely no avail. I have had D now for 5 weeks but it's actually the livable part. What is killing me is the migratory arthritis. It is in my knees and feet so bad I waddle like a penquin and you should see me go down a flight of stairs! I look like Frankenstein! If all I had was D, I could live with this but the pain from the arthritis is horrible. Thank God for Vicodin. That is the only way i made it to work 3 times this week. I need to ask the doc if I need to go back on Lyrica. Has anyone had good success with anything for the arthritis? I am afraid to assault my poor stomach with anymore pills. I also think that I have Thrush from the Flagyl. (Is there a worse pill to take in the world? Nastiest taste ever!) Nothing like jumping into a disease full bore! I am learning what I can eat now and I had ice cream with choc last night with no stomach cramps. I just wish that I could get this D under control. I have a colonoscopy scheduled for this Thurs. Maybe they will be able to tell me something then.
I went from a very active person, to one that has to come home from work and take a nap. The adjustment in my lifestyle is hard to take but I am hopeful that as this subsides, I will be able to go back to my active life. I almost feel guilty complaining of what some of you see as minor bumps in the road. But if I have learned anything in the short time that I have has Crohn's, is that it manifests itself very differently in each person.
I hope I find a home here on this forum. This is such a nasty disease and friends just don't want to hear about your D and night sweats!

 

[ameslouise]

Hi Mom on the Pond and welcome!

Do you and your doc have a treatment plan beyond the antibiotics? Perhaps you should talk to him/her about prednisone to knock down the inflammation while you get on a long term maintenance drug. There are things out there to help with Crohns and Arthritis, like Humira. The pred will also help knock down the joint pain.

Be careful with that Vicodin because it's really hard on your GI tract! And yes, Flagyl is the worst! Yuck!

I really recommend you talk to your doc about what else you should be taking to get the Crohn's under control. Good luck!

- Amy

 

[momonthepond]

I have an appt. the day after my colonoscopy with my FP. We will go over a treatment plan and I will mention the Humira and the prednisone. I don't think he has ever had much dealings with CD. I will also speak to the Gastro when I have my colonoscopy and see what he recommends. All this is so new to me and them, that their first reaction has been to throw antibiotics at it. The antibiotic that set this ball in motion was Cleocin , a very nasty drug I have come to find out. I am supposed to medicate before every dental procedure and it was a 1200mg dose at once , then 6 days later another one with the next procedure. I have had D since then. I have to have a tooth pulled the 26th of May and I am scared to death that it will make things worse . They have prescribed Keflex for me now but I feel I am playing Russian roulette with my hip replacement or my CD. Thank you for the info! I am reading everything I can get my hands on to make informed choices. I realize that the medical community is very laisse-faire about what they prescribe. Until THEY are the one that can't eat or get two steps from a bathroom, the effects don't seem to cross their minds too much. I was also on large doses of Vicodin before my hip surgery and it never bothered my stomach then, so I am being very careful now. Thanks for the welcome! I feel like I have found a home!

 

[hawkeye]

Hi momonthepond and welcome to the forum. I agree with Amy, prednisone is a drug to consier to get the inflamation under control. It is what they prescribed for me to get things under control when I was first diagnosed along with the flagyl. I have had it prescribed a few times since to get inflammation under contro following flareups.

Mark

 

[momonthepond]

Thanks for the info! Did the prednisone make you swell up like a toad? My knees already look like footballs! I am way behind in my flower beds cause I can't bend my knees enough to get down on them to work! How do you manage to get the Flagyl down? I had one get stuck in my throat and thought I would vomit! It was sooooooo bad!

 

[hawkeye]

The only effect I had from the Flagyl was a metalic taste in my mouth. I don't recall the pills being hard to swallow, although it was 20 years ago when I was initially diagnosed.

I had some swelling with prednisone but it was more in the face. The main side effects were insomnia and increased appetite.

 

[Snookums]

Hi mom on the pond, I am a newbie to the forum. I joined about a week ago and already i am feeling so grateful to have found somewhere to relate to fellow crohnnies. The support throughout the forum for every individual case regardless of where the patients disease should currently be taking them is truly amazing. I am hoping you will find some help and support through the forum as it sounds like you really need some from somewhere. I got diagnosis about 2 and a half yrs ago (although I am now certain its been with me since my teens)now 35, and it took me a long time to come to terms with it. I tried to deny my dignosis for a long time and it really didnt get me anywhere. My only bit of advice would be to try to be as patient as you can about accepting diagnosis. It really is a mental challenge and because of this support is crucial. Learn as much as you can about the disease too as knowledge is power. Just remember we are all here for you.

 

[momonthepond]

snookums

Thank you for the support! I look back on things that have happened to me over the years, and I too now believe that this disease has been "cooking" in me for a while. I always thought that my prior tummy troubles we from the dogs (I have a kennel) or work (I work in a factory). I now see the connection. I just hope that I haven't hurt my body too much from lack of knowledge. Now I am a voracious reader on CD! it helps very much to have fellow Crohnnies to talk to. Thanks again!

 

[ameslouise]

I have an appt. the day after my colonoscopy with my FP. We will go over a treatment plan and I will mention the Humira and the prednisone. I don't think he has ever had much dealings with CD. I will also speak to the Gastro when I have my colonoscopy and see what he recommends. All this is so new to me and them, that their first reaction has been to throw antibiotics at it.

Pond Mom - I would really suggest that your GI be the one that handles all your Crohn's related meds and treatment plan. Your FP (I assume you mean familly practitioner) can't possibly know enough about CD or the associated meds to put a good plan together for you. S/he should know what's going on with your Crohns and meds, but really shouldn't be the one treating you for it.

Good luck - and don't worry about your gardening. The weeds will still be there when you feel better!

- Amy