First follow-up with GI after colonoscopy and Humira

[dreamintwilight]

So, my first follow-up with my GI after my diagnosis, colonoscopy, and starting Humira is tomorrow. I've already made a list of some questions I want to ask him, but wanted to know what questions you think are important to ask?

I want to make sure I don't forget to ask something important. I also know each person is an individual case, but what were some of the questions you guys had in the beginning? I know for some that may be a long time ago to think back. Just thought I'd get people's input.

 

[Tan]

Hi Marisa,

Good luck with your appointment, not sure you will get this before it because of time difference etc but I will share what type of questions I asked with my first or second appointment back;

1. At this stage I was only on pred so I went thru what other drugs I will be put on to treat the disease etc.

2. I asked about how severe my crohns was and what areas it was located.

3. My main focus at this point was actually to do with starting a family as I got sick at the same time Jamie and I were going to start a family. So I asked about medication and pregnancy, crohns and pregnancy, when he thought I would be ok to start a family etc. Not sure if this is at all relevant for you but for me I needed to know what I was in for.

I had heaps of other questions but just stuff that related to me and about understand the disease it was more before I actually joined this forum and got a lot more understanding about the disease.

Good luck!!

 

[dreamintwilight]

Thanks, Tan! I haven't yet gone to my appointment yet. I still have 3 more hours to go!

Some of your questions I have on my list already, so that's good. I should ask him how severe my Crohn's is. That's a good one! I have SOOO many questions, haha. I hope he doesn't get impatient because I also made sure I took the last appointment of the day so my husband didn't have to leave too early from work to make it!

 

[Astra]

Hey Marisa

Late with this thread, so how did you get on today?
xxx

 

[dreamintwilight]

Hey, I just got home. I had a good visit. I told him I've been having a few flare-ups in between really good periods, and he said he wanted to put me on azathioprine on top of Humira to kick my Crohn's into remission. I'm definitely going to look more on here about aza. I know it's used by many on here but there are more side effects, but I think I'm looking forward to remission (which he said should hopefully happen in the next 2-6 months!). After my next colonoscopy he said I wouldn't have to get another one, as long as everything is looking good for another 5 years! Cool! He felt my tummy where the large and small intestine connect and said he still felt a slight bit of inflammation, but it seemed better than before, which is good. So, he's going to get my blood work to see about my low WBC before I can start on aza (for some reason he hadn't received it from my PCP's office).

He said I didn't have to worry about a low-residue diet so much anymore. I didn't have to worry about tomato seeds and strawberry seeds, haha! I'm thinking that means beans might be okay for me to eat and things with skins! Woo! So, yeah....more potential medication, not too great, but the positive things are remission and a less restricted diet!

I'm also thinking about starting the my birth control patch that I had been holding off on until I talked with him about blood clotting risks and he said it wasn't a significant amount of risk to really be concerned. OH! And the fistulas that were on my CT scan didn't appear to be there anymore. Even though they couldn't get into my small intestine, they took pictures of it and no fistulas! But I still do have inflammation and some narrowing, so the aza will hopefully get rid of more of that as well as sticking with the Humira.

Let me think what else...I had my list of Q's ready for him! Haha! I had 15 of them. He said because I had fistulas my case was considered moderate to severe. It's more based on how it presents itself rather than symptoms experienced.

So, I am supposed to see him again next month. And when/if I start on aza I'm supposed to get monthly CBCs and CMPs every 3 months. I guess that's on top of the CRPs every 3 months for Humira as well. Sheesh! Haha. So that's my update!

 

[MikeinBklyn]

Good for you Marisa! It's nice to hear positive things once in a while.

I am starting the process to get Humira approved (again) from my new ins carrier. I really want closure in the fistula department, pun intended.

Good Luck!

 

[dreamintwilight]

Yeah, Mike, I'm trying to stay positive about starting another med, even though a lot of the side effects sound pretty scary.

I hope you get approved for your Humira! It's really helped me a lot so far Since my husband and I switched insurance carriers we've had basically no problems dealing with insurance. It's so nice! I got the Rx for Humira the day after my colonoscopy and within a week I was approved for it and started it! IT all happened so fast. I hope your new carrier works out for you. Keep us updated!

 

[dreamintwilight]

Some people were asking me about my follow-up so I bumped this thread so people can read here I need to remember to not post things so late at night when I know most people don't see it, haha.

 

[Astra]

Hey Marisa

That sounds like a really positive visit! Well done!
I was on Aza a few years ago but I had an allergic reaction after 3 months, I came out in hives! But, don't read up on side effects etc, try it, remember we are all unique, and what works for one, might not for another and so on.
I'm nearly done with the Pred, not sure yet if I'm ok, but Humira is waiting for me, if I go on it, I'll be mithering you for advice!!
good luck &
lotsa luv xxx

 

[dreamintwilight]

Thanks Joan Yeah, trying to remember that though many people on here had adverse reactions to aza it's probably only a handful of people that have Crohn's since most are not even on this forum! An there are still some people on here that did well on it as well. I guess it's true that you hear more about the bad stuff than the good stuff.

I saw that you were almost done with Pred the other day! That must be really exciting for you I hope, not just for my sake ylol2: ), that you won't have to go on Humira! Just kidding But it would be so much better if you were in remission! If not, I won't mind you asking me questions about it!