Back to the beginning again

[LaLaNapa]

So I'm apparently back to square one again.

Back in April I had my first colonoscopy, which I thought showed lots of inflammation. It sure wasn't that pretty pale pink like in other's people's pictures - more like watermelon jolly rancher color. (Which sadly I haven't had in a long time.) And there was a lovely stricture. Couldn't even get past the splenic flexure in my colon and got to finish the day with a lovely barium enema. :ywow:

I wanted to see a gastroenterologist then, but was referred for a strictureplasty instead at Cal Pac Medical Center in SF. I had wanted to go to CalPac but for a consultation not a procedure I don't even know if I need. Ooops. So then I had to wait again for a referral and this time it was to a local doctor. That was a whole other nightmare.

First visit was good with lots of talk about being really interested in IBD, finding out what the stricture was, referring me for an endo MRI at CalPac, and narrowing down the Crohn's diagnosis. He sent me for a blood test (prometheus). Second visit he got the blood work back, said "yep it's Crohn's" and gave me meds. Which set me back 15 years - lost 10 lbs in 2 weeks. And when I went back he just tried a different med, but had apparently dropped the ball on any other tests or referrals to CalPac. When I told him I'd been experimenting with my diet (gone Paleo) he told me to stop interrupting him and went on to say that maybe he needed to refer me to someone that just deals with this. When he was done I again brought up the question of whether my prior low protein diet could have caused some of my symptoms, he got up, said "oh yeah, you need protein" and walked out of the office. :ybatty: Good riddance I say. At least he referred me to UCSF.

The only good thing was that I finally had someone say after 16 years of symptoms, "yes, this is Crohn's". It was both reaffirming (as I had thought it was all of this time so maybe I do know my body) and also a reality that has nonetheless been difficult to accept.

So that brings me back around to the "beginning"...agian. Had a great visit at the UCSF Gastroenterology Department. Met three doctors! And none of them are convinced that what I have is Crohn's. Here we go again. I mean I'm not that attached to it, but I'd like something narrowed down. It mostly comes down to the blood work and symptoms. "There's something there, but just not sure it's Crohn's." Could be SIBO, which was the first time I had that mentioned to me (and since then I've read up on it and yep, that makes sense too.) But we do want to find out what the stricture is from. And they want to see for themselves as the barium enema results don't seem to jive with the colonoscopy findings. Interesting. The barium enema found ulceration and mucosol lining changes, but they didn't think there was much to be seen on the colonoscopy except for the stricture. Oh, and that blood test my local GI Dr. did isn't so reliable, and he only did part of the whole panel anyway. :ymad: (Thanks for that useless test!) So Dr. Uma Mahadevan (hope she's my new superhero) wants to try to get PAST the stricture with the scope. And see what's going on in the small intestine with an MRI.

So yeah for me, two colonoscopies in one year and - this is quite special for a claustrophobic like me :shifty-t: - an MRI. Two scans in the MRI Tube of Terror. I'm hoping I'll still be out of it after the morning colonoscopy :yrolleyes: and I have a little happy pill if not. :ytongue:

But now I am back in the Waiting Zone. Now I remember how much I didn't like this...

 

[David]

Hi LaLaNapa, I'm so sorry you haven't received a response until now My apologies.

Wow, so much uncertainty must be frustrating. In the time since your post, have they found anything a little more solid?

All my best to you.

 

[Stressed Mom]

I'm very sorry to hear that you are having such a frustrating :ybatty: time right now.

Hopefully soon and you will get the answers you need and can be treated properly. I know the tests are not pleasant to go through but at least they can help the doctors figure out what's wrong and hopefully get you feeling better.

I wish you all the best!!

 

[LaLaNapa]

Scheduled to go to UCSF two weeks from today. Just put in my scripts for Golytely (incongruous name!) and my little pill to get me through the MRI. :frown: Don't think I'll hear much after that, with the holidays and all, but at least my insurance picks up the tab before the year is over.

Thanks for the kind thoughts. I was starting to feel alone.

 

[Stressed Mom]

I am so so so sorry you were feeling alone :frown: that is a horrible feeling, I know it very well myself.

I hope that you are feeling well enough to enjoy the Holidays, if at all possible try not to stress too much as it can sometimes make symptoms of flares worse and not knowing exactly what you are dealing with might be best to be cautious. And trust me I know how easy it is to stay not to stress but how hard it is to controll the stress :confused2:

I sure hope that once you complete all your tests and get the results you and your doctor will have a more accurate idea whats going on and develope a treatment plan to get you back on track and feeling like yourself again.

Please never feel alone here

 

[LaLaNapa]

Mystery solved. I feel like a CSI plot that's gone on too long. But at last now I know that everything I thought I knew is not true, and everything I thought wasn't true is in fact the truth.

My colon is absolutely fine! Dr. got through it no problem, didn't see any problems with the mucosa that the barium enema had showed (throughout the colon) or any ulcerations (also found by the B.E.). And not even a stricture!! So apparently that could have been some spasm (day long apparently) or some sort of transient infection.

The good thing is that the Dr. was prepared to encounter a stricture so used a pedi scope. She was able to get in to the ileum, and there, lurking along 10 cm of terminal ileum was the long suspected vilan - the Crohns! (And ew that puppy is ugly!) What is narrowing is the connection from the ileum in to the cecum.

Well, it through me through a loop and now I need to forgot focusing on my colon and jump in to ileum territory. Oh, and I came out alive after 45 minutes in the MRI. And that little happy pill didn't do anything. The tech was so sweet and patient (I made him back me right back out the first time). But I closed my eyes, prayed and sang happy songs in my head every time I had to hold my breath and MADE IT THROUGH. I am still deliriously happy with myself. :dance:

Now just need to wait until February apparently to get in the schedule for a follow up and see what the MRI found.

So, I am officially confirmed as eligible for the Crohns Forum. Yeah for me. (Don't know if I should be THAT happy but hey it took 16 years to get this diagnosis!).

 

[David]

I'm glad you finally have an answer! I'm sorry it's IBD of course but I can imagine it's nice to know what you have so proper treatment can commence.

*hugs*

 

[LaLaNapa]

Just another brief update. I got the pathology and MRI results yesterday. Biopsies had been done in the colon, which I didn't realize. Found chronic inactive colitis in the left side colon - which actually encourages me as I have been on a Paleo diet and supplement regimen from my ND for 4-1/2 months since the first colonoscopy, which did show inflammation both visually and in the bioposy at that time.

But the ileum shows active disease obviously. And both the ileum and colon both show metaplasia. And there is an additional 3-4 cm segment of probable disease in the jejunum. So that was unsettling to say the least.

So while the Dr. mentioned possible treatment with Entocort after the colonoscopy, and suggested a clinical trial for a nature supplement from Japan, she is now talking about anti-TNF therapy. But that is a little extreme for me at this time, especially considering that I didn't even qualify for that trial as I wasn't symptomatic enough! I myself am very interested in LDN. So I am doing my research to talk about that on my next appointment.