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skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/11/2009 8:49 PM (GMT -7)   
Hi Susie,

I saw that you are back posting again. I know that you have been having a rough time lately, so I wanted to check-in and see how you are doing! Hopefully you are feeling better and in less pain!

Skeye

Tony McGuire
Regular Member


Date Joined Feb 2009
Total Posts : 483
   Posted 5/11/2009 9:16 PM (GMT -7)   
Susie?

Skeye? Are you OK?
Wife: Liz, the choice of a lifetime
Dogs: Koshka Prayer & Chomp Prayer
Meet My Wife And Me


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13477
   Posted 5/12/2009 1:39 PM (GMT -7)   

Hi Skeye,

Thank you for asking, but no things have been going rotten for me lately, I am nearly at my wits end. My pain is doing ok, thanks to a wonderful PM dr, gawd she is my saving grace in the pain dept. I just did not realize how one dr could make such a difference in a person's life. But this lady has mine. She refilled my pump 2 weeks ago and increased my pump again. This time instead of going up 1mg we did 1.5mg since I tolerated the last increase with no problems. To someone that does not have a pump that sounds like such a tiny amount, but straight concentrated medication versus pill form, well there is no comparison lol.

I have crohns disease and have never attained remission in 7 yrs. It is in a full blown rage right now. My gi says its like a seasonal disease as spring and fall is when he has more of his patients in the hospital with it.

I started Humira last December, developed Lupus from Remicade infusions. I was feeling so good gut wise after 8 doses. I was thinking to myself it was too good to be true. In fact, I was afraid to to say anything because it was working so well, have had to many let downs with meds for this rotten disease. I had to stop the Humira in Jan because of bronchitis, then went right to a virus for a week, I also have some kind of skin disorder that is a spin off from the crohns and get these blisters that turn into open sores and some have become infected. When you are on Humira you cannot take it if you have an infection anywhere or any open sores. Well, my right foot acts like it wants to rot off with all these open sores. I saw my rheumy last week and he just shook his head and said wait 2 more weeks then call me and we will see how these sores look before resumimg the Humira. The longer I go w/o Humira the sicker I am getting with the crohns. I do take 3 orals medications for the crohns but they are not the winning ticket with me. In fact, my rheumy increased my Imuran twice in two months. I take Placquenel for the Lupus, now on to 200mg a day of it, he just increased it too. Because of the crohns I am a very slow healer so I really doubt these open sores will be healed in two weeks, even though I put a creme on them twice a day. I can assure you, the life of a crohnnie is no better than the life of a CPer. Crohnnie learn where every bathroom is in a store-no bathroom you son't go there. You also learn to time driving distance from a restaurant to your home so you can make it time. They have got to build more restaurants out here inmy area, I am so tired of eating at the same places, when I feeel like rating. I should feel like Queen Bee for as much time as I having to spend on my throne lol.

Sorry for the rant, but things are rough right now. Hugs, Susie  

                                                                                                                                                                                                                           



PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 5/12/2009 2:43 PM (GMT -7)   
Susie,
I'm so sorry to learn how rough it is for you right now. You have so many things going wrong I'm amazed at your ability to manage them all.

Please, rant away! You help all of us so much. Sending out hugs to you.

(((((((((((((((((Susie)))))))))))))))

PaLady

skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 5/12/2009 8:21 PM (GMT -7)   
Susie,

Wow! You do have a lot going on! I've known several people with Crohn's & I can only imagine how horrible it is to live with! Boy, CP is hard enough on its own, but then you add in everything else... I don't know how you do it! You deserve so much credit. I am so pleased to hear that your "new" pump doctor is helping you so much. A wonderful doctor like that is really a godsend. I'm sending some prayers your way, so that your sores heal up & you can then start taking your Humira again and get your Crohn's under control -- or at least down to a manageable level!
(((((((((((((((Susie)))))))))))))))))))

hugs,
Skeye

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 5/12/2009 8:31 PM (GMT -7)   
Hey Susie I am on humira for sero neg arthritis but I also catch bronchitis quite a bit and each time theyd take me off the humira and each time my arthrits would flare really badly and it would take weeks to get me back in control again so now I have permission from my chest dr to stay on humira unless its life threatening. The humira doesn't seem to make the infection worse it just takes longer to fight it, its only if I catch pneumonia I have to come off it. How bab are the skin infections? It may be worth getting a combined specialist opinion about whether you can go back on it even though they're not fully healed especially when its been so long. Worth an ask anyway, golitho

edt
Veteran Member


Date Joined Dec 2008
Total Posts : 773
   Posted 5/13/2009 6:20 AM (GMT -7)   

(((((((((((((((((((((((Susie))))))))))))))))))))))))))

XXOO
Patti


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13477
   Posted 5/13/2009 8:41 AM (GMT -7)   
Hi Folks, thanks a million for encouragement & prayers, need all I can get right now. If I had to deal with the hard core pain and crohns again at the same time I am not sure I could. I battled that battle for so long and it took alot out of me.
I know as I get older it takes longer to get health issues under control, the body can only handle so much hitting at one time. I just know if someone would
 have said I would be in this shape 8 yrs ago, I would have laughed in their face, how little we know what the future will hold for us, I am the poster girl for that one. We are having monsoon weather here in Tx and its getting to me. These overcast days are awful, I need sunshine. The air is thick with humidity, I have to strap on the oxygen tank to walk out back to piddle around. I made a real big mistake on my oxygen recently. I use liquid oxygen and my portable tank was a small one but the problem is it only lasts me about 3 hours. I asked for the next size up, much bigger portable. But, if its completely filled I cannot lift it, let alone carry it. So, I am suppose to get my small unit back today. I just feel like a dog on a leash with the small one and only having three hours of use.
 
Golithe unfortunately my gi agrees totally with the rheumy on the Humira. These sores are not something to jack around with when they become infected. Too risky for blood poisoning to set in they tell me. Mine have swelled, been red hot angry and puss filled, this is why I get cut off the Humira. I had a small tiny cut on the bottom of my toe that I did not even know about. That landed me 8 days in the hospital with cellulitis in both legs. All from that stinking tiny unknown cut. So, no they will not take any risks or chances with me.
 
I am waiting on the sun to come out its been peeking thru a little behind the clouds. I am off to the dentist this afternoon to have two permanent crowns put on, yippee. No more root canals for me. Now, I remember why its been 20 years since the last one. I think next time I will opt for those teth that go in a glass of water on the night stand at night lo. Too expensive on top of it all. I could have made a hefty down payment on a new car for the cost of these two.
 
Hope everyone has a LPD and can enjoy some of it....Hugs to all Susie


anice
Veteran Member


Date Joined Apr 2009
Total Posts : 536
   Posted 5/15/2009 5:46 AM (GMT -7)   
Susie, I am sorry to post so late. I am hoping that you are getting some relief. You have been having a hard time. I am sending well wishes for low pain days and improvement with your Chrons' , and the skin infection is improving so you can get back on the Humira, which help you to feel better,too. And ofcours the wonderful hugs that make us all feel better. You are in my thoughts and prayers. Please post soon and let us all know how you are doing.
Anice
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