I haven’t done well on keeping you up-to-date on what’s going on with my guts. Sorry about that. Honestly I don’t even know what to say about it. I’ve kinda had a roller coaster of emotions about it. When I told you that I had Crohns, well, I was kinda wrong. I had blood work done that said I tested positive for Crohn’s. Which now I have learned, testing positive for Crohn’s with blood work doesn’t necessarily mean I actually have Crohn’s. I am still a little confused so if anyone can explain it in layman’s terms better than me then please share in the comments below! Basically, from what I understand, the blood work says that my body is hitting these marks that are consistent with Crohn’s marks but it doesn’t mean I have Crohn’s. The only test that does reveal if I actually have it is a colonoscopy.
So I have a colonoscopy. Tomorrow. Blah.
Oh and if having a colonoscopy isn’t enough for one week, I have jury duty the following day. Sheesh. What a week!
Okay so I’m here at the hotel now. I’m taking dose after dose of medicine with clear liquids between.
At this point I am just wanting answers. Regardless whether the answer is Crohn’s or not Crohn’s. I just would like a clear answer as to what is going on with my stomach issues.
As I said earlier, I have had a roller coaster of emotions. I was frustrated with the random diarrhea and constant bloating. I was happy I thought I had answers. I was struggling when I was trying different diets but felt better when I thought I found the one I could handle and feel good on. Then I got frustrated again when I felt like I was back to square one.
It took me almost 3 months to get into a GI specialist at the hospital that I feel is the best for me (4 months if I wanted one in my hometown). I went to a holistic dr in the meantime. She was amazing! She spent over an hour with me. She explained things. She asked me a million questions. She asked me questions about my current nutrition, health, environment and more. She asked me questions about my nutrition, health and environment when I was growing up. I had already done lots of my own research before I even had my appointment with her so I had somewhat of an understanding of how to heal and deal with a gut naturally and with modern medicine. It put my mind at ease when I could carry on conversations with her and had already purchased the books off amazon that she mentioned.
The holistic dr told me what to expect from my GI appointment. She told me what tests she would like him to do. She told me that if I left the appointment with prescriptions and felt confused, just to bring them to her and she would help me decide what to take based on how I felt about it, not on how she or the GI dr thought or felt because one of my biggest concerns is taking loads of modern medicine pills for the rest of my life.
Okay, so after leaving my holistic dr I felt good. I had a plan. I knew that I was going to tackle this and in no time I would e feeling better!
The plan was the GAPS diet. I would start with the intro and work through each stage until the full GAPS diet. Once on the full GAPS diet I would stay there, stay there for a long time. For life if needed.
I followed the into GAPS diet for 10 days. It was hard. It was real hard. It was doable though, after all, I only had to do this for a few weeks then I would move on to the full GAPS diet. The full GAPS diet wouldn’t be too hard for me except for family functions and things like that.
Well, a few things happened after I started the GAPS intro….I went on a 12 day vacation, did a hometown mission trip for a week and finally met with the GI dr. The GI appointment put me over the edge, with my emotional roller coaster that is. My husband was pleased with the appointment. I however was a little disappointed. I felt like he was dismissive with my concerns. He put my general practitioner down and continued to say over and over with each symptom or concern “well, I think it’s ISB, not Crohn’s”
Alrighty, well, I may not be a GI dr but after following the Low-FODMAP diet for 2 weeks, pooping along the side of the road, rushing into hotels and gas stations and picking my outfits out based on if there will be food or drinks, well, I just got a little put off when he dismissed my concerns.
Once I found out (or thought) I had Crohn’s, I felt better that knowing exactly what the problem was and I felt like that made treating and controlling it better. I know there are a lot of health concerns with Crohn’s. I know it’s not something that can be cured and certainly not something that anyone would want. However, I also know that when I know what the problem is then I can tackle it and do my best to control it. But now that I don’t know, I am frustrated again. So frustrated that I not only reverted back to an unhealthier way of eating…I started eating straight up JUNK! I ate pizza, donuts, lattes and more and not just here and there but more than I have eaten in a long time.
Now here I am in a hotel room, about to loose 5 pounds in one night, waiting for a test that I don’t even know what I want the answer to be.
Have you felt like this before? Do you ever have digestive issues? Have you ever had a colonoscopy? Share with me if you don’t mind. I’d love to hear.
Karen farmer says
I will be praying that God can set you at ease no matter what the test show. Yes I’ve had a colonoscopy not fun getting there but no problem during or after. I. So sorry you are having so much trouble with this and even tho they seem so different it’s sounds as if you are as upset as I am when I try so hard to loss weight and nothing happens. I have always wondered is this one of the ways God pushes us to hold on to him as tightly as we can and then find out we are barely holding on when things aren’t what we hoped for. What ever He wants you to learn, know or trust Him for that’s what I’ll pray for the most. God bless you tomorrow and remember you are laying in His hand!
luvhealthbeauty says
Thank you for your words of encouragement. I am sure not loosing weight when trying so hard is frustrating. You are right, we need to go to the Lord before anything else. Worry and stressing does us no good, we know He has us through it all. I will keep you posted on things and we shall see where it leads.
Mary Beth Elkins says
Jackie,
I am sorry you are having a hard time and I can sympathize your situation. I have gastroparesis and it took 3+years and several doctors and every diagnosis’ before I finally got diagnosed.
They made me feel like all my symptoms weren’t there or was all in my head. I know my body and I know when something isn’t right. But by the time I got diagnosed it’s was less than a year and I was put on tube feedings. I hook up to my feeds 12 or 24 hours a day. I have a tube in my stomach and one in my intestines.
Even though I do trust my GI I am very proactive in my own care. I have learned all my do’s and don’t. It can be very difficult and so emotional. Some days I want to give up and that is natural. I keep a planner with everything going on in my family and my life’s. But I also include a diary for all my symptoms, my emotions, my meds,and anything else I feel I need to remember. This helps me to track my flares and also something I can share with my doctors. It is a great coping tool.
A colonoscopy is not bad at all well except for the prep. You are out and it only takes a short time to do it. A slight discomfort but by the time you go home you will be fine.
I’m sorry this is so long but I wanted to let you know you’re not alone. Stay strong!
luvhealthbeauty says
Mary Beth, you have an amazing story. I am so glad you shared with me. I can’t imagine what all you have been through and what it was like on a feeding tube. I agree with you, we must be proactive in our own care! Sometimes it’s hard to push and question drs but knowing our body can save our lives.
Kelsey says
I know how you feel about the doctors dismissing your symptoms that sometimes make your life not livable. I had similar issues last year and when I went in for a test for my stomach they found cysts on my ovaries on the CT scan. I went for weeks to two specialists that kept saying my symptoms were because of the other issues. I went into the doctor after having some very serious stomach issues, more serious because my Dad has Crohn’s disease and had to have emergency surgery on his intestines 21 years ago. I ended up having a colonoscopy because they couldn’t find anything in blood work to determine what was causing my symptoms so I had a colonoscopy. The hardest part of the test is the prep and the IV (I’m afraid of needles). Once you get over the fact that your butt is raw and you are so hungry you could eat everything off a menu it’s fine! After the colonoscopy they found nothing (thank goodness) and put me on a regiment to help my symptoms. I hope you get answers!
luvhealthbeauty says
Thanks for sharing your story Kelsey! I am so happy they didn’t find anything. I pray that your regiment is helping you and you feel better.