@jadegreen I just saw
your thread. Six kids must be tough enough, but you also have your spouse and yourself. I hope you get better soon.
Now, just as a disclaimer, I am not a medical professional in any way, I am a CD patient like yourself.
First, you can and in my opinion should refuse gadolinium, especially with breastfeeding. An experienced, qualified radiologist should be able to “read” the images gathered without the contrast agent.
Second, regarding stress, with that much responsibility and a serious illness, I think you may want to make some adjustments and decisions about your life in order to prevent stress and have some stability in your mind and life. Stress will worsen CD. If your illness progresses, it will affect your life (especially your family) in a way that may further contribute to the stress. Researching stress management techniques may help significantly.
Third, regarding treatment, as an experienced patient, I say fear not the medicine, but the crohns itself. Remission should be your one and only goal, nothing less. The disease should be kept in control, it’s much easier to do that in its early stages. If you wait and get worse, you may not get the benefit from the drugs that you had feared, that would have helped otherwise. That scenario is a sad one, believe me you don’t want to be there. When it comes to treatment, I believe top-down is the best approach.
Fourth, do your research; you owe that to yourself and to your kids. You need to be knowledgeable. Crohn’s can and does become fatal in different scenarios, there are also other risks associated with CD like cancer, short bowel syndrome etc.
Medications do carry risks and side effects, but it all comes down to risk analysis. Keeping the basic fact that uncontrolled and uncontrollable Crohn’s can be extremely destructive in mind can be helpful when doing that analysis. Additionally, when reading the increased cancer risk with the medicine, for example, you should not lose perspective on statistics. Say, hypothetically, the possibility of something happening is 1/40000. When reading something about the risks the text may say if we add this factor into the equation, it “doubles” the possibility (risk) of that thing happening. But if you read the data and think about it, it’s now 2/40000. Additionally, this is not some mathematical universe, we are talking about ourselves, think about the complexities of material life, the body, pathogenesis etc. Of course something bad may happen, if that happens the numbers won’t mean anything. Even then you can completely heal. Having a positive outlook on life, being courageous while also doing your research and knowing what you are in for, and being relaxed in general should be the way to go, especially when dealing with crohn’s.
Having chronic inflammation in your intestines will significantly affect your overall health long term, that should also be kept in mind when doing the risk analysis.
Best wishes.