Not sure where to start -

[angelfood]

This is my first time posting anything on a forum. And I don't want to sound like a whiner - I just have a TON of questions.

I have been dealing with this ulcerative colitis/crohn's "way of life" since the beginning of this year. Was in the hospital for nearly 2 weeks in June and haven't really gotten to feeling all that "terrific" since. I am a young wife and mother and push through each day for my family.

I guess I just want to know if anyone else hurts all of the time. I have some amazing drs working with me - very knowledgable, but they have up'd my prednisone to 60 mg per day and I am a puffy mess. My legs are puffy and my face is too. That I can deal with, but it doesn't seem to be helping the pain in my colon - both sides - burning all of the time. The weird thing is that there is no bleeding right now, just lots of pain. I am also on Imuran.

Another question/situation - I am awaiting help with Humira. We tried Remicade, but came to find out that I can't take it anymore. Allergic or something. So, we are trying to get on Humira, but insurance doesn't cover. VERY expensive. Has anyone else dealt with this? What do you do?

I am concerned about vitamins too, but wonder what will conflict with the meds I am currently taking. The doctors don't seem to be too receptive to talking about supplements (but I know that my body needs the nutrition).

I guess I would just like to know what others are doing - what works for you and what you think. I am 33 years old and really want to continue living each day to the fullest. Right now though, the fullest seems limited.

Any thoughts/advice would be great!

 

[muppet]

How long have you been on the Imuran? What dose? Is your doctor using the Prometheus Labs metabolite test to measure whether you're on the right dose?

 

[angelfood]

Been on the Imuran since I was in the hospital - mid June. They sent my blood to Mayo to test to make sure I was going to get the right dose. Run labs once a month to keep up on the Imuran. To be honest, I feel like I am relying heavily on "what the dr. says" and not truly KNOWING enough about what is really going on with myself.
Are you on Imuran? Have you ever been on Humira?

 

[muppet]

My daughter is on Imuran (6MP really, but Imuran metabolizes to the same thing). It's been very effective for her, but it takes a long time to ramp up and start working. If I were you, I'd wait and see if 6MP was effective for you in a few months (if your condition permits waiting a few months) before rushing into Humira.

When Sarah's 6MP/Imuran isn't working, we use Prednisone to cover the gaps. It sounds like Prednisone may not be doing the trick for you. Have you discussed hospitalization with your specialist? Bowel rest and IV steroids might help. My daughter has had luck in the past with a PICC line for IV feedings along with Solumedrol and a couple days' stay.

I'm not a doctor, I can only relate what has worked for me and/or my daughter in the past. I'm a big proponent of reserving Humira and Remicade as last resorts before surgery.

 

[angelfood]

I checked out your daughter's website. I am so thankful that I am the one dealing with this - not my child. I will pray for your family.
Thanks so much for the support. I am not bleeding right now and don't have diarrhea - just TONS of pain. I really don't want to go back to the hospital, somewhat for selfish reasons - school is starting next week for the kids, you know? I meet with the dr. this afternoon. Will see what he says.
Thanks a mil.

 

[muppet]

I understand the reluctance to be admitted but sometimes it's just the thing. It's also more or less inevitable with this disease so my advice is to expect it.

Thanks for your kind words. Luckily (or unluckily), I've also had Crohn's for almost 30 years and so I've been able to go to bat for Sarah with the docs. I can't recommend doing your own reading and research enough. It's really vital to stay on top of what options are available when talking to your specialists. There are a lot of competing theories out there and a lot of docs with strong opinions and personalities who aren't always right when it comes to what will work for you as an individual.

I hope you'll get some relief soon either in or out of the hospital!

 

[xJillx]

Hi and welcome! I agree with muppet, you need to give Imuran more time to work. It can sometimes take 3+ months to fully kick in. However, 60mg of pred should help with the pain; that is a high dose.

You are right, doctors don't seem to want to discuss supplements. I just started taking fish oil for its natural anti-inflammatory properties and vitamin e to help with circulation (there's a hightened risk of blood clots for those with Crohn's). Check out the Diet, Fitness, and Supplement forum for more ideas.

I sure hope you start feeling better soon.

 

[Cricketnut]

Hi and welcome

Have you noticed any foods that make things worse - do you keep a food diary? Most Chrohns sufferers find, by trial and error, that there are foods that set them off. Check out the diet section on here.

It's worth looking at as it can provide some relief if you can quickly eradicate the foods that are the worst for you.

 

[angelfood]

The strange thing is that right now I am dealing with constipation but so much pain from the inflammation that isn't under control and causing so much pain. Is that normal? I also have gastroparesis that has recently developed (since hospital) which makes things more complicated....anyone have thoughts on this?

 

[xJillx]

Yes, some people with crohn's deal with constipation rather than D.