Scared and confused

Hi everyone
Let me start by saying thank you for reading my story. I could use some advice and support right about now. I was diagnosed in 2011 with Crohn’s after suffering for a year of intense flare-ups and thought I was dying. As soon as I was diagnosed, I became an avid reader on the disease and nutrition. I made an early decision not to go on biological until I exhausted everything else. My specialist recommended I at least go on ASA, since the side effects were minor, I did. Within a year I was off wheat and it changed my life. It completely stopped my severe flare-ups and I was feeling so much better. Life resumed. In the last year I've been dealing with some new stresses and although I haven’t had severe flare-ups, I have been suffering from lethargy, regular diarrhea, dizziness, some stomach cramps, and now depression. URGH! Back to the nutrition research I went…. Now I'm on the FODMAP diet to see what foods may be causing the discomfort. 2 weeks ago I contacted my specialist and he booked me for all new blood work and a colonoscopy. I was devastated when my blood work came back normal because I was SURE I was vitamin B12 deficient (mine is 287) and was hoping injections were going to be the answer that solves all my health issues. No such luck... The colonoscopy confirmed that my crohn’s is still very present (but with less inflammation than 3 years ago) and higher up in my GI track. I just came back from my specialist for a consult and he now thinks it may be time for me to try biologicals. He's ordering an MRI to see if the small intestine is also affected but the waiting period is 5+ months. We went through all the options and he thinks Remicade may be the best option in combination with another drug (I forgot what it was and just emailed him to remind me). I really do trust him and I know he cares about me, but he did have a patient die from a brain infection from taking this medication and he didn’t want to keep that info from me. Thanks doc....

Although I feel “off” all the time and am about to stop eating all together, because food is no longer my friend, I still feel like I am not sick enough to take the risk of taking biologicals. I hear of all these poor people who have undergone several surgeries and I have been able to control it somewhat but my doctor thinks I am fooling myself in thinking I can cure my crohn's with nutritional restrictions alone??

I am so confused and sick and tired of being sick and tired. Help!!

Hi Danielle
It is a worrying time for you and it is times like this we need all the support we can get.
It would be really great if crohn's could be treated by diet alone but you will see through the forum
that this is most unlikely to happen.
It is an unfortunate fact that Crohn's has to be hit hard and your doctor has the right idea
taking the top down approach to treatment.

Many people have been helped with Remicade and where necessary there are other measures
That can be taken if side effects occur.
Statistically speaking it is only a small minority that have the misfortunate happening of brain cancer.
The risks have to be measured against the risks of untreated or sub optimal treatment
of crohn's.,which in my opinion could be far greater.
It is a decision that only you can make together with your GI .
feel better soon
Hugs and best wishes
Trysha

One thing to remember when talking Crohn's medications is that none of them treat the disease, they all attack and try to suppress your body's immune system and all of them can have nasty side effects, to the point where it's difficult to tell one from the other. That said sometimes it's the only way.

If you haven't taken the TB cure do so. its a prep for Remicade anyway.
Add Probiotics to your daily diet, I find them helpful.
Set up a Crohn's diary it will help you to see your progress and it may be therapeutic as well.
Hang tough.

Thank you so much for the kind words. I have gone for the TB test as soon as I was diagnosed.

I forgot to mention that I also have Raynaud's disease which is also an autoimmune disorder. Some research indicates that there’s a link with crohn’s. I’m such a lemon… lol

Hi and welcome.

Sending you my support.

Danielle,

I would say that you are a strong person for trying to go about it on diet alone. This shows that you aren't afraid to plot your own course in attempting to treat your disease. Don't give in to the disease or your doctor. Keep a working cordial dialogue with your treatment team, and take a stand when necessary. This way, you'll be able to come to alternate treatment options in your own time and on your own terms. I have tried four different treatments since August and none of them have worked. However, because I feel like my doctor listens to me, I am willing to meet him half way in some cases when it comes to my treatment. Hope you take some comfort in the range of advice you receive here.

I am so glad I joined this group.

I'm still as confused as ever but being to talk to someone else, going through the same thing, is comforting. Thank you! xox