Feel like I'm being forced...

[HalfHermit]

Okay, considering what some of you are going through, I feel like a real jack...(well, you know.) for complaining. I am, for almost all purpose, asymptomatic.

When I was much younger, I was diagnosed with Ulcerative Colitis (around the same time I was having heart problems). Some rigorous treatment later, I was feeling better, and put on Asacol. I would still bleed occasionally, very small amounts. Those were the only symptoms. I informed my gastro, and he would just up the dosage. Eventually, it made me so nauseous taking it, I stopped all together. (No reaction, and he would just seem to keep upping the dose).

Since I didn't mind the touch of blood, I went on fairly normal for about...10 years or so. (still asymtomatic, except for the blood) *Note: Blood generally only occurred when I got a cold, food poisoning, or was under immense stress.

In the last 2 years or so, I started having debilitating muscle pains for the smallest activity. They would occur about 2-3 days later, and would last for 24 hours, then disappear. After seeing several specialists (including a new Gastro), it was decided that my immune system was messing with my body due to the UC.

Gastro put me on Apriso (once a day meant more compliace, far easier for me), and with a little time (and actually taking my pills), I felt IMMENSELY better. Then he wanted to do a colonoscopy....

Well, it took an hour (cause apparently I have a weird shaped intestine), they couldn't get far enough in, but they said they suspected I had Crohn's, not UC. (Doctor got an immediate second opinion from another gastro during procedure.) One MRI later, they felt comfortable stating I had Crohn's.

First, we tried Imuran. I had an immediate allergic reaction.
Then, he wanted to bump up to Humira (insurance denied initially, but came around), a bunch of tests and I am about to go on it...

---THE POINT---

I feel like I have been railroaded onto this new medication I do NOT want to take. Everything has moved so fast. The Apriso makes me feel better, I'm not even bleeding anymore. (confirmed considering the level of stress I am under) But they seem hell-bent on upping what I am on.

When I feel good, why should I risk all of these terrible side effect? Should I just tell him "NO" when I see him tomorrow? I know they put in so much work getting my insurance to cover it, but I don't think it's necessary.

I am still young and healthy(-ish), and these drugs eventually stop working, so why start early when I think I can only feel the same or worse?

I'm not sure what to do. Should I keep following "doctor's orders" or trust my instincts and stay the hell away from these heavy-hitting drugs until I actually NEED them?

 

[Cross-stitch gal]

Hi and welcome to the forum! :welcome: I have been in your same situation as far as having a doctor pushing you to go for Humira/Remicade. If you have concerns, is there a way you can hold off a bit before starting this new drug and able to do some research? If not, can you get a second opinion? Please keep us updated on how you're doing and how your appointment went. :hug:

 

[Fairyclarey]

Hi. I am pretty new to all this Crohns stuff, as I was only diagnosed last summer, so don't take anything I say as proven -
But my opinion at the moment is, why go down the drug route which is likely to cause you to be unwell, and may be stressful, and effect your life significantly, if you currently feel well and are not effected significantly by the Crohns. I am the same. All symptoms are mild, and do not disrupt my life much at all. I am still active and 90% of the time pain free. Can't really complain when I’ve heard some other people's stories. I have only tried one medication so far, which was Octasa. Didn't work for me - it actually made my symptoms worse. As soon as I came off it, they went away again. Now they want to try me on Azathioprine!! They want to suppress my immune system, make me susceptible to hundreds of illnesses, feel fluey all the time, and have to come in for blood tests every week for months and months to make sure I am well. I just don't know why I, a 24 y old, thankfully feeling fit and healthy, enjoying life to the full, would want to swap to a life like that, where I would feel unwell all the time, and have to modify my lifestyle in order not to catch anything. Yes, I would consider this if my Crohns was bad, and affecting my life, but thankfully it currently is not. Weighing up the priorities, I would always go with, which is going to give me the best chance of feeling well right now. And for me that seems to be not taking these aggressive medications. It just doesn't make logical sense in my mind. But I don't know much about the medical ins and outs - although, I’m not really sure anyone really does. It seems to me like it has been a bit of a guessing game for everyone involved so far.
One thing I will mention as well - again, I really don't know much about this yet - but I have been looking into diet treatments. I very recently spoke to a dietician about a liquid diet. I am going to be trying a polymeric diet. I don't even feel I’m necessarily ill enough for this, but I don't want to sit back and do nothing at all to treat my Crohns. My hopes are that this will help me achieve full remission, and hopefully, with my disease being mild up to now, the remission might hold out for a while, and then I will hold off on any harsh drugs until necessary.
If YOU feel this is not the route you want to take right now, you have to vocalise that to them. Or even if you are having doubts, let them know that, and they can help guide you. But I was pretty clear with my Dr, as soon as they mentioned ‘immune suppressant’, I shook my head, and told them that is something I am going to be putting off until I feel I really need it, and that I am more interested in trying diet treatments in the first instance (while you have this time where you are still feeling ok, and the disease is not progressing in any severe or dangerous way, then why not give some other more natural things, with no side effects a go first?). They still gave me some information about the drug, but they fully took my opinions on board, and got straight in to helping me with the diet treatments.

What are your thoughts now?

Hope all goes well, and you find the right balance for you.
xx

 

[ellie]

My impression is that there are currently two schools of thought for Crohn's treatment.. "Bottom, up" which is the older view, and " top, down"
The bottom/up practitioners try the simpler, older "tried and true" medications first to see if they are sufficient. They tend to be less powerful treatment-wise, but often have fewer side effects. The top/down approach seems to be particularly favoured for younger patients with more severe disease. Stronger medications that may well give better control, but can have more side effects.
It's worth having a detailed talk to your GI in my opinion.
Personally, I was started on prednisolone, plus 6mp (low dose while awaiting metabolism info) Seemed like overkill to me given that my GI symptoms were fairly mild. A new GI started me on sulfasalazine (still under decreasing prednisolone cover), and I am currently in remission. If you were getting good results with Apriso, then a few months trial to see if that keeps things under control could be worthwhile..


HD