Advice?

[allypaige99]

Hi to all. I am new to the forum and I'm hoping for a little feedback. I am 31 years old and I've had Crohns disease since I was 18. I've had 1 resection at the age of 20. I'm allergic to prednisone. My crohns treatment has consisted of pentasa, imuran and vitamins. With this treatment I would say that my crohns was somewhat under control. I still felt that I was in the bathroom way more than I should have been, mostly after eating.
In august of last year my hubby and I found out that we were expecting our first child!
During pregnancy I have never felt so good! My crohns was almost nonexistent! It was fabulous! Now, postpartum my crohns has flared...abdominal pain, diarrhea, bloating,etc. But not only does my tummy hurt but I hurt all over...mostly in my legs. I am breastfeeding so the meds I can take are limited. The only med that is helping right now is vicodin for pain and it slows down my peristalsis. Is anyone on long term pain med treatment? My doctor has discussed me stopping breastfeeding and starting one of the biological agents but I'm so scared of those! Plus I don't want to stop nursing my baby. I'm hoping to spare her from having an autoimmune disease! I'm a nurse and I'm scared of the infections I may come in contact with that would put me at risk if I start remicade or humiara. Can anyone offer any feedback or does anyone have a similar experience to share? Thank you in advance!

 

[David]

Hi there and welcome! Wow, that's a tough predicament you're in, my heart goes out to you

What vitamins are you on specifically? And where do your legs hurt? Is there any swelling involved? Have you ever tried or heard of enteral nutrition?

Sorry for all the questions, but answers to those might help us provide you some topics to discuss with your doctor

I wish you all the best!

 

[mario]

I have heard so many people say that pregnancy put them in remission. I wonder if it's a hormonal thing? Maybe it should be researched. Sorry I can't help with your questions but congratulations on your new baby
Marie x

 

[allypaige99]

Thank you for the replies. To answer some questions, my legs hurt mostly in my knees and ankles. No swelling. Its more like an achy arthritis feeling but its constant. I take a multivitamin along with iron and b12. and I haven't tried enteral feedings.

 

[David]

I would definitely research enteral nutrition and discuss the idea with your doctor if it sounds interesting with you. Total enteral nutrition is shown (if you stick with it) to have about the same remission induction rates as prednisone without all the side effects. We have a subforum dedicated to it here.

As for your legs, if there's no swelling, then you may want to ask your doctor to evaluate a potential magnesium and vitamin D deficiency if they haven't already. Its not uncommon for people with Crohn's disease to be low in those and it can lead to leg pain like you describe. Of course, so can other issues so discuss the pain with your doctor if you haven't already. And no, a multivitamin would not provide you enough of either of those if you are indeed deficient due to Crohn's.

 

[allypaige99]

Thank you David. I appreciate you taking the time to answer. I have an upcoming appt with my gastro so I will definitely talk to him about all of this. Thanks again!

 

[Angrybird]

I do not have any further info to add but I did just want to say 'hi' and welcome to the forum

I hope that this problem can get sorted for you soon hun, please let us know on how you get on at your appt.

AB
xx

 

[woops!]

Hi Allypaige,
I agree with David, I was very low on vit B & D and didn't think about till I found this site. I had bad leg pain, did the blood work, now on a supplement and leg pain is better. Not gone, but better. Congrats on your baby. As for staring something like Humiara I am currently wating on my insurance comany to process my MD paperwork. I am also a nurse and worried alot about starting something like this being around alot of illness and infections. I made up my mind when I realized that I was not going to get better without trying something new. I just have to hope it goes well.
How old is your baby? When you started breast feeding did you have a plan or idea as to when you would stop? That deff is a difficult decision. What does your hubby think? Have you thought about contacting at lactation nurse? Was there one at the hospital you had you baby? They may have some ideas. Sorry not much help with that. Good luck. Have you tried to contact the moms that post here? They may be more helpfull. Woops!

 

[allypaige99]

Thank you AB and Woops for your input. My baby is 2 months old and I'm hoping to breastfeed at least until she's 9 months old. But I know that I have to be well enough to care for her! I will update after I see the doc! Thanks guys!