Giving one more med a try

[Manzyb]

Hello all :0)

I have been on all of the different meds for Crohn's since I was 15 (now 27). My most recent scope after I had my baby shows severe disease in the ileum, colon, and rectum. It's not all through the colon, just in some spots. The ileum has been the worst part for the last few years and 3 years ago I was told that I needed a bowel resection.

My doc wanted me to try Tysabri, however, I would like to try to have another baby within the next year and they don't have any studies really on pregnant women. I was willing to give it a try, but considering my plans, figured it wasn't the best option. So I went to my docs second choice which is Cimzia. He wasn't as hopeful with it as the Tysabri, but is willing to take my thoughts into consideration. Anyway, we're going to give the Cimzia 3 months to try and fix me up, if I'm still in a lot of pain and sick all of the time it looks like a bowel resection, and then starting Tysabri.

I'd rather just get the resection and maybe be healthier for a while, but my doc has been trying to avoid it for what seems like ever. I just want to start feeling better so I can be the best mom to my little girl that I can be. I feel so guilty feeling so bad all of the time and not having much energy. From what I understand, now amount of medicine is going to get rid of the scar tissue.. not sure if that's right or not.

Anywho, I took my first two Cimzia shots today and really hoping this helps me some!

Does anyone else with kids struggle with feeling guilty and like a bad parent because they just feel like **** all of the time??? It's so frustrating!

 

[My Butt Hurts]

Does anyone else with kids struggle with feeling guilty and like a bad parent because they just feel like **** all of the time??? It's so frustrating!

I never felt guilty back when I was very sick. The kids will be happy if you are snuggling them on the couch or if you are running around the yard with them. They are very resilient.
Your new little peanut is adorable, congrats!

I hope the Cimzia works for you. I'd honestly go for a resection before I went on Tysabri due to the incurable brain infection side effect.

 

[Manzyb]

Thank you! I guess its not really guilt... maybe just feeling bad about it at the moment... I don't know! It's just hard when she's upset and I have to keep putting her down to run to the bathroom all of the time. She's a very happy baby, I must be doing something right!!

 

[DustyKat]

SQUEEEEEEEEEEEEEEEEEEEEEEEEEEAL!!! Sadie is absolutely gorgeous!!!

I so hope the Cimzia works for you hun, fingers and everything else crossed!

You are right...scar tissue is scar tissue and no drug is going to cure that. I wonder at what point the doc starts to look at your quality of life? That's what it is boiling down to isn't it...what is the point of him avoiding surgery only for you to be feeling unwell and tired most of your life?

Welcome to parenthood! A life of guilt, worry and fear! :lol:......

Seriously though hun, it is normal and natural to feel the way you do and that is testament to the great Mum you are. I know it's difficult to see in the moment but it really does boil down to the quality of the time you spend with Sadie. I have no doubt you make the most of every second you spend with her and that's what counts...:hug:...and when you start feeling better just think about how many more of those seconds you will have...

Much love, :heart:
Dusty. xxxxxxxx

 

[xJillx]

I am sorry to hear you haven't been well. I am crossing my fingers that Cimzia does the trick.

You little girl is just so adorable. Look at those eyes! Please don't feel guilty for not feeling well. Just show that precious baby love (which I have no doubt you do), and they'll do just fine!

Please keep us posted on your progress.

 

[Manzyb]

I have no problem showing her all kinds of love!! :0) She really is just such a joy. on my worst days she flashes me her big smile and it makes me melt!


Well, I started the Cimzia on Friday, so I'm about a week in tomorrow, and i don't feel any different! Still tired, stomach pain, and going to the bathroom all day long. I didn't even eat anything from when I woke up until about 4 today and still went to the bathroom like 7times! Which is less than normal, but i didn't eat anything!!!! Oh well. The next set of injections is next Friday. Maybe it's just going to take a bit for it to make me feel better.

@Dusty- I think the SAME thing! Why wait to do the surgery and just keep me on the same level of feeling ****** all of the time?! I've had this doc since I was diagnosed at 15, but I'm seriously thinking of switching. When I was in the hospital when I had Sadie, they had a GI guy come in to talk to me about the pancreatitis, and he told me right away that he would have me have the bowel resection right away, and then talk about a new medicine! At the time, I didn't want to hear it, I was so very sick and just had Sadie. Now, I'm ready, and just want to get it over with! Ideally, i'd get it before she gets up and walking around, but we'll see!

@Jil- Thanks! I think she is a keeper!! =0) I've been able to keep my head up a little better the last couple of days. Sometimes its just so hard to do it all, but us Crohnies always get through it!

Thanks for the kind words guys :0) It's always so nice to get some encouragement.

 

[DustyKat]

I think a second opinion is well worth it hun. It never hurts to have your thoughts listened to and validated regardless of the outcome.

Good luck and let us know how you go with Cimzia and the GI!

Dusty. xxx

 

[Lisa]

oh my is she CUTE!!!!!......oh - and I mean Sadie (an you lol!).....

Have you tried any of hte other biologics like Humira and Remicade? I honestly would go for those first if you haven't - I'm not too keen on the Tysarbi option myself....

I hope things start to improve on the Cimzia - maybe you need a little more time for it to kick in.....here's hoping!

 

[Manzyb]

Thanks Paso! She is a keeper!!

I have tried them. I was on Remicade first and then Humira. Both made me feel somewhat better, but I've never gotten the Crohn's into remission since i was diagnosed 12 years ago!
oh well, i'm hoping the Cimzia will help. So far, I don't feel any different, but only had my first loading dose a week ago! So fingers crossed!

 

[Manzyb]

Thanks Dusty!! I'll keep you updated!

 

[AshleyElaine87]

I had my daughter about two years ago. I had surgery three months after I had her. I have been in remission for about a year now, and am glad I had good doctors to steer me in the right direction.

I am now pregnant again, and this pregnancy is going a lot better than the first. I don't feel 100%, but I don't think I am in a flare either

 

[Manzyb]

That's awesome news Ashley!! If it were up to me, I would have had the surgery already. I think I'm going to go for that 2nd opinion. I want to be able to run around with my little one and feel good!

oh, and CONGRATULATIONS!!!!! How far along are you?