3:30 a.m. rant

[em6263]

So.

Last week, after quite an interesting week involving a lot of unprecedented hemorrhaging, I had a colonoscopy and my (new) GI told me I have Crohn's. I've had stomach issues for years, but always just assumed it was IBS and tried my best to ignore it/OD on immodium.

Today, I went back to the GI for the biopsy results. They were unfortunately inconclusive - they came back consistent with ischemic colitis. Which is kind of odd, given my age (33). My doctor still thinks I have Crohn's, and wants to start me on steroids, as I still have a lot of inflammation even after IV antibiotics and a week of Lialda, but needs to 100% rule out an infection before she prescribes the steroids and confirms the CD diagnosis. So, even though I spent last week hooked up to IV antibiotics, I'm now getting tested for every possible infection known to man, getting 9 billion blood tests, and doing a lot of really horrible things involving stool samples and little cups with solvents.

I'm really overwhelmed and in over my head. A week ago, I was "fine." Now, I probably have an illness that's going to make me sick, restrict my diet, and cause problems for the rest of my life. I'm really freaking out. I'm so sorry to unload on all of you, but it's been a REALLY hard day, my arms are covered in bruises from repeated IVs/blood draws, I haven't eaten a meal in over a week, and I'm picking fights with my (wonderful and supportive) boyfriend because he is out of town this week and I am home alone and feel like crap (no pun intended).

I guess my biggest question is: have any of you ever had colonoscopy biopsies come back saying ischemic colitis? My doctor seemed to be unphased by this, and still pretty convinced it's Crohn's, and I'm realizing I'm grasping at straws, here.

I'm so sorry to rant and rave like a lunatic. I'm just having a really hard time with everything that's going on, and feeling really weepy and sorry for myself.

I promise - this is the last time I bother you all with this drivel. :c

-Em

 

[Jennifer]

Its not a bother at all. This is what we're here for.

Had to look up Ischemic Colitis: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001304/ and your symptoms are the same as the symptoms listed for it yet CD has the same symptoms and more. Problem is that it gets treated with antibiotics or gets better on its own. :/ I wouldn't be too phased over something that needs antibiotics either. If antibiotics don't work, then it may not all be Ischemic colitis.

As far as the age thing, I've always been told that I'm too young to have any of the illnesses I have. Age doesn't really mean a thing other than it may be more common in older people but that can always change. Back when I was first diagnosed with Crohn's they said I was too young and that only older people get it. Now days more and more children are being diagnosed which turned that idea on its head.

I remember having to do every test under the sun for a diagnosis and even had to do poo samples for years after just checking for blood. It became pretty normal after a while. I'm sorry you're going through all this and that your bf isn't there for you at the moment. We all need all the support we can get. I'm glad you found the forum at least and you will get a diagnosis soon since you have a great doctor who simply will not give up. Here's hoping you get treatment soon!

 

[GFinDC]

Hi,

I just wanted to say I hope it gets better soon. I have celiac, not Crohn's but diet changes are definitely part of that. I have a very different diet from before I went GF, but that is a good thing. It did take a while to get used to the idea of eating different foods and not eating things I was used to though. But after a while I got used to it and it became the norm rather than something I minded. Anyway, just wanted to say that part of it, eating differently, is something anyone can learn to do and it's no big deal after you do.

On the celiac forum I visit, there is often a period of adjustment that people go through after diagnosis and starting the diet. Some people say it is the 12 stages of grief thing, I don't know but it is a process.

Oh, and welcome to the site, there are lots of nice people here!

 

[em6263]

Thanks so much for the replies.