Seeking Wisdom/Advice

[Jennifer625]

First of all, I am so grateful to have found this message board - I am one of those "I have support but no one actually 'gets' what I've been going through" sufferers.

Last May I thought I had food poisoning; however, it didn't ease up at all and I suffered through painful diarrhea, vomiting, and some pretty severe lower left abdominal pain until July (when I finally got health insurance and saw a doctor). I was referred to a GI doctor who recommended I have a colonoscopy/endoscopy. He found a small area of inflammation in my colon and biopsy results stated I had colitis. I had several blood tests (including an IBD panel) done but because I didn't have "classic" presentation, I was given a diagnosis of indeterminate colitis.

I was on several medications and started to feel better. In November, my gallbladder decided it no longer felt like functioning so I had to have it removed. Initially, I had significant diarrhea and heartburn but was given some new medication that essentially made me feel like a million bucks. I sincerely thought my troubles were over.

Right before Christmas I started having extremely bad diarrhea and vomiting and my lower left abdomen began hurting something fierce. I contacted my doctor who put me back on all my medications and said this was probably a flare-up and wanted to do another colonoscopy.

Today I actually had the colonoscopy done and the doctor told me my colon looked completely normal (the prior inflammation was gone as well). Because they did not do the endoscopy today, he scheduled me for a CT Scan next week to see if anything is wrong with my small intestines.

I am completely at a loss here. It's extremely distressing to me to be told my colon looked fine and yet my symptoms now are far worse than when I initially got sick. I'm afraid everything will come back normal and I'm going to be left to assume it's "all in my head" or (worst yet!) everyone else will assume that.

I'm hoping that by joining this message board, I won't feel so alone. I'm seeking words of wisdom and/or any sort of advice that can make this whole process just a bit more bearable.

 

[nogutsnoglory]

It's definitely not in your head. There could be areas they haven't seen which are impacted, it can be microscopic colitis and could be severe IBS. Don't feel depressed, just keep demanding answers because you know what you are going through is not in your head.

 

[Polaris]

It's definitely not in your head. There could be areas they haven't seen which are impacted, it can be microscopic colitis and could be severe IBS. Don't feel depressed, just keep demanding answers because you know what you are going through is not in your head.

I agree, do not think that it's all in your head. You know your body better than anyone, including doctors. Continue to fight and advocate for yourself (I know it's not easy). I'm somewhat in the same boat, although I do have active inflammation in my small intestine, so that is where some of the pain is coming from. But I also have upper GI pain and had to fight for an endoscopy because my CT "only" showed a hiatal hernia, which couldn't possibly cause me any pain according to my GI. I'd like her to try and live in my body for a few hours then say that.

Keep at it, sometimes it's an uphill battle, but it's worth it.

 

[Lady Organic]

remain positive, your Dr managed to get a CT scan by next week, this means they take you very seriously. Even if the scan comes out clear, I am sure this kind of doctor will take time to find what is going on.

 

[Jennifer625]

Thanks for the input, everyone!! I feel a millions times more relieved now that I've found this forum.

I have THE most amazing GI doctor who genuinely cares and is very patient. He told me basically that I have to be patient as this can take some time to sort out with various tests. The problem is: I have absolutely no patience (for anything, really) so the idea of waiting is so frustrating.