I had my bronchoscopy 14 days ago and have been told that the results are not narrowed down enough yet. I am so scared I’m going to be told I have MAC; I would not think there are a whole lot of germs that cannot be identified after 14 days.
My problem is severe Crohn’s disease. I have night sweats, fever, constant diareah, weight loss and severe abdominal pain. My GI was ready to start me on Remicade, and then my lung CT showed nodularity, which meant I couldn’t get my Remicade.
I would love to know if anyone else on here has severe Crohn’s disease?
I cannot imagine how I could tolerate antibiotics because I cannot eat except what is absolutely necessary to survive - and then I have to live with the pain to digest it.
Please. Does anyone else on here have severe Crohn’s?

I don't have Crohn's but if your bronchoscopy show MAC then maybe you would quality for the Nitric Oxide study being done in Vancouver. JoAnn K

@pinktower, Hello there, and welcome to our forum. Do you have a first name? First off, I am sending you a big cyber hug because I know how sufferable it is to have Crohn's. My husband, his siblings, and his daughter have that. My step-daughter went on Humera for awhile; that seemed to help. It went away for several years until a stressful job brought it back on. I have a feeling that all auto-immune diseases make us suseptible to MAC. As far as your test results go, it takes 4-6 weeks to grow MAC. So, you need to give that more time. In dealing with Crohn's, I would seek out a teaching medical institution like the Mayo Clinic, Johns Hopkins, NIH, etc. I just spoke to my husband about your situation. He reminded me that when he was put on antibiotics, his Crohn's cleared up. He also said that his diet had a lot to do with it getting better. He found that wheat, barley, and oats (including oatmeal) would bring a flare-up on. You may have a food sensitivity as well. Maybe try a food diary to document what you have eaten and the effects afterwards. I myself have a gluten sensitivity. Every time I eat breads, pasta, and the like; I tend to get a lot of phlegm build-up in my lungs. Please keep us posted on how you are doing. Also, check to see if Connect has a Crohns support group as well. I hope you find some resolve soon.

Hello JoAnn, I took Azithromycin, Ethambutol, Rifampin for 18 months and then inhaled Amikacin for 3 months. The side effect of the meds. is making me sick on my stomach, cramping, and diarrhea but it went away after a few months. I found out to avoid stomach cramping is eat rice and banana and that calm my stomach. I went to NJH and my Dr. took me off all the antibiotic and my 3 sputum culture came out negative. I went through what you are feeling and scared to death but it will be alright just listen to your body when you start your meds. We are all here for you. I will pray for you! Cila

Thank you, Prayers are welcomed. I have on my list for tomorrow Rice, Bananas, Ginger Tea, Ginger Lollies if I can find them and a good quality Probiotic..

Since I last posted, I have been hospitalized at Mayo in Jacksonville for five days to get the Crohn’s under control. I am now released and am to take the three drugs every day for 30 days. After that I am going to take them theee times a week for 17 months. The plan is that I will be able to begin Remicade for the Crohn’s in 30 days. When you start the three drugs, how do you do it? Take them all at once? What time of day? Right now I don’t know how to start them.

@pinktower , My gosh, it sounds like you have really been through it! I hope you are feeling better from your Crohn's episode. I know that was no fun. About starting on your meds; I have heard that some doctors have recommended that you introduce each antibiotic a week apart. That way, if you have a bad reaction to one, it will be easier to pinpoint which one it is. Members have written that Rifampin was hard on their stomachs, it worked out best for some if they took it on an empty stomach. It has been known to cramp the stomach or cause nausea. Everybody is different, you may not have any trouble at all with it. Let us know how you do on the BIG 3.

I went back Two days ago for a follow up with my doctor. I now recall something I forgot to ask. When the infectious disease doctor visited me in the hospital, he said something about my eyes needing to be checked. I don’t have an eye doctor appointment. Do you think I should call about this? Or is the eye doctor appointment later on in the treatment?

Hi pink tower, if you are taking ethambutol, you should get eyes ckecked every 4 to 6 months. I had to come off this med because my vision was changing. Everything I looked at was really bright, even if it was 12 midnight. Once I came off this med, my vision hot normal again....