How do I know Humira is working? Newly diagnosed UC/Crohns?

Hello all!
I was diagnosed with UC in May. doctor's now think it might be Crohns because they recently saw some inflammation in my small bowel. That aside, I was taking off of Remicade at the start of July and started Humira on July 19th. I did my second dosage this past Friday Aug 2nd. Doctors said I should notice a difference within a week or two, but I am not exactly sure what I should be expecting to notice.

The only thing that has decreased is the pain in my stomach. I take a pain pill first thing in the morning after my rounds of morning bowel movements and I can usually get away with not taking another one until early evening, after dinner time. But now that I am writing this, maybe my pain has decreased because I am still on pain pills? hmm.... food for thought. :)

Other than that I still have the following symptoms:

1) diarrhea 6-8 times a day
2) lots of blood in my stool
3) shortness of breath, which they think is because of my low blood count (had a blood transfusion 4 days ago)
4) joint pain
5) serious sensitivity to food (I am only eating like 3 things right now)
6) low energy

On top of the Humira, I am on 60 mg of Prednisone. I am taking a daily probiotic (started this week), I am eating lots of soup based on the GAPS/SCD diet which consist of organic veggie broth- beef or chicken- and carrots slow cooked in a crock pot, eggs, and turkey (sausage or ground form). Oh and BOOST supplement drinks. I have been slowly trying to introduce new foods, but it seems like i feel it the next day.

Any insight on how one knows they are in remission? or what to expect with Humira? How do you know its working? Its all sooooo confusing.

Oh I should note, that its slightly important, because the doctors say that if Humira doesn't work, we are looking at surgery which is life changing especially since they cant say 100% that is UC or Crohns, both which are very different surgeries.
#UCSUCKS!! :)

Thank you for all of your help!

Thanks for the reply. I had two treatments of remicade and they said it wasn't working. Plus I had a bad reaction to it. Was in bed for three days!

Yeah I went from minor symptoms to hospitalization almost what feels like overnight. I was training and ran a half marathon and I think that put me over the edge. It was right before I got diagnosed.

If the humira doesn't work they say surgery or trying adding a third medicine - I can't remember the name- but they said it can take 6 months to know if its working and it's side effects include trauma to the brain. So scary.

Joanna,
My GI dept has been talking about my case since I went back into the hospital in July. They said they are puzzled because I respond to IV steroids overnight but when I get discharged I start to decline (while on oral steroids). and they were really hopeful that Remicade would work. They said my flare up with really severe. I am barely managing living with it for months. I cant imagine living with it as long as you have been. Surgery is super scary, especially because I could end up with a permanent poop bag if it ends up being Crohns. I see you are on the paleo diet. Has that helped? Are you back to running?

Right now I am doing sort of a SCD/GAPS soup diet but im trying to slowly introduce new foods because I can only eat so much soup. Oh and eggs and turkey meat are the other two things. Other than that I am getting calories from BOOST resource supplement drinks. I've never heard of absorb plus. I will have to look into that. The BOOST drinks are 250 calories for a juicebox size but end up costing me like $40 for a week and a halves worth. It adds up, but I know I need the calories and the extra nutrients. I thought about juicing but I am sort of scared to put anything into my body because sometimes I wont have a reaction until the next day. But once this major flare up goes into remission I was planning on sticking to the paleo diet.

Supposedly the steroids are supposed to make my appetite increase like crazy, but sometimes I have to force myself to eat. I have gained maybe 2 lbs after losing 50 since Ive gotten sick.

I miss running. I am trying to start walking. Its not the same. haha but I guess moving is better than not moving. :)

Faithmac,
Thank you for your reply. What symptoms did you notice went away first?

My first flare was like yours, I got Dx'd and about a month later I had my worst flare ever and ended up in the hospital.... My recommendation is to get a 2nd opinion from a GI who specializes in IBDs like UC/CD. Some GIs don't treat many IBD patients and can't handle touger cases.

Once you get some medicine built up in your body then usually the flares aren't as bad as your first flare (no promises on that).

If you are really interested in surgery then I'd also set up a consult with a highly experienced surgeon.

Blood and pain and cramping seemed to be the first to go. Urgency was the last. I needed to bump up the Humira for it to work. I take it weekly. It started out improving little by little. Then it wouldn't hold for 2 weeks. GI and insurance were ok with the weekly dosing. I saw a big difference then. I used all rectal meds at the beginning . I don't think it's as strong as remicade. It's been over a year now. Have some arthritic type pain from time to time. I'll take that over UC symptoms .
It doesn't work overnight. Have a little patience. Also added fiber to help bulk things up. Hope you have some luck with the Humira! :)

Aircia,

If you think that you need to increase your dosage because your symptoms are not improving then some GIs will write scripts for Humira up to (2) doses every week for Humira, some will write them for (1) a week or (2) every other week.

From my point of view, the sooner you get the flare under control the easier it is to control. What I mean by that is that maybe you want to think about increasing your dosage or switching medicines soon so the flare doesn't get worse. Like I said in a previous post in this thread that usually the first flare is the worst because the GIs are still looking for the correct dosages and medicines for you; they also need to build up in your body before they start working.