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Not getting the answers I need from my doctors

Hi, I'm a 30yr old mother of 3 (6, 4, & 8mths). I was first diagnosed with IBD when I was 20 and had no idea what I was in for. In the beginning it was relatively easy to tolerate, I wouldn't say I had ever had any major flare that restricted my day-to-day life for the first two years.....then....we decided to have a baby and after baby #1 I had my first MAJOR flare that landed me in the hospital. I was reassured that I'd be back to normal in no time and that my condition hadn't worsened, but that just wasn't the case. The meds didn't work the same as they had and it was scope after scope and test after test and then finally different meds. After about 9mths I was finally to the point where I could tolerate it and wasn't scared to leave the house or be around people period. And here I am after baby #3, in the same shape as I was before except for being a bit worse each time. Finally, without to help of accurate information from my doctors, I know having another child is out of the question, but know what I am faced with, that I wasn't before is, my condition worsens before and during my menstrual cycles and for me that's 3wks out of the month....so there is only 1wk that I feel OK enough to push myself to function normally. I've brought it up to my doctor several times (which is a new one btw) and still I feel as though I'm getting the run around. As of right now, his plan is to up my Humira to once a week, after my scope on Monday to make sure nothing else is going on. I'm at such a lose and very confused and frustrated that I can't understand this disease much less have confidence that my doctor can gete where I need to be. 😢. PLEASE, is there anyone out there that has the same complications as I do and can offer their story and a bit of guidance. I feel so helpless to my husband and children. 😞
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi Fighter4ZTH and welcome to the forum! :D

My sister had her first baby in May and she started to flare again after she had the baby. She's done a lot more research on pregnancy and how it affects Crohn's than I have so I'll tag her to your thread and hopefully she'll be able to add some information for you (her reply may take some time as she's not well herself). tsstarry do you have anything to add? I'm sharing her thread for you to check out in case any of it helps you Fighter4ZTH. http://www.crohnsforum.com/showthread.php?t=74248 She's still in the process of seeking treatment.

How long have you been on Humira? I'm glad they are doing a scope and will try to increase your Humira to see if that helps. I really hope it does. Maybe you could ask them if they might consider a short course of steroids to see if that helps at all?

Keep us posted and again welcome. :)
 
Thank You Jennifer for replying....I never realized how helpful it would be to be a part of a support group that understands what I'm going through! I have tried to research about my condition as well but the internet is so contradicting and sometimes makes me more confused than I already am LOL! I'd be happy to hear from your sister and hopefully we could help each other through this because I know how she's feeling right now and it's very depressing when you have to rely on loved ones to do the things only a mother's touch should be able to do! 😞
I've been on Humira for 4yrs now and in the beginning it worked wonders and dif improved my quality of life but after a while I started to notice that 3-4days before I was due for my shot I'd start to have problems and then it would take 3-4days after that I'd feel a little better. Me and Prednisone have a Love / Hate relationship and with my previous doctors that was their answer for everything, so I was on it off/on at high dosage for while and LOVED how I felt while on it...but HATED the side effects and and was never informed of the long time effects it could cause until I started with my new doctor who is COMPLETELY against Predisone but has given me Uceris which usually used in patients with UC but only helps very little for me. I'm very tempted at times to put myself on Prednisone b/c you can only be miserable for so long before you come to a point that you'll willing to sacrifice your future health in order to provide relief but I know I'll be sorry.
 

Jennifer

Adminstrator
Staff member
Location
SLO
There are definitely other steroids out there. Personally I don't use Prednisone and use Entocort instead (depends on where the disease is located) because it has fewer side effects. Many people have mentioned Humira not working a few days before injection day and for some increasing the dose to once a week helped, others got help from combination therapy (adding an immunosuppressant or Methotrexate) and others got relief from trying another biologic (Remicade, Cimzia, Entyvio). Hopefully increasing it to once a week works for you. :)
 

my little penguin

Moderator
Staff member
Ds was just switched over to humira once a week
Plus mtx AND partial en with the crohns exclusive diet .
A lot of stuff but for him it works
Originally it was humira every two weeks
Then added Mtx after a year
Then added humira to every 10 days after 6 more months
Added diet after two years
And last week added humira every week
Makes things so much better

Good luck
 
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