One more Time

Joefnh · Post by **Joefnh** » Tue Mar 27, 2012 3:24 pm

Well today I got to experience my yearly colonoscopy...yep with Crohns they like to do about one a year (yuck), apparently due to the higher risk of colon cancer. I did have a partial colonoscopy last december when they were looking into the surgical option in the area of the sigmoid colon that had a high number of diverticula. These diverticula had been infected often over the past years, but the full colonoscopy including an upper EGD was not completed at that time as surgery was opted for.

This time I has a chance to talk with my GI about this test and he agreed to do a thorough exam including a total of 35 biopsies between the upper and lower scopes. We are looking for mast cell issues and a good thorough survey for MC in both the upper and lower parts of the GI system. I should mention that the reason the number of biopsies was that high, is that it is 2 sets of biopsies, one for mast cell pathology and another for the MC and other IBD pathologies. I am curious at what this test will show. He will be sending one set of slides out to the Mayo Clinic to a group that specializes in mast cell pathology, and the other to the local pathologist that originally Dxd my MC (CC) and Crohns in 2010

Addtionally a surgeon did a small laparoscopic procedure through the older scars to release some scar tissue from the earlier surgery that was causing pain occasionally. That was pretty minor and only required 2 stitches. Comparatively no big deal.

Now I will have to say I should have anticipated that 35 biopsies would make you sore...they do. But I think this will be worth it to have these issues thoruoughly looked at in detail.

The good news is that this should be the last of my 'medical adventures' for this year.

nancyl · Post by **nancyl** » Tue Mar 27, 2012 3:30 pm

Joe,
That was a lot, but think it very wise to be so thorough. You are paving the way for me and I will have to try to remember that when I go through my next colonoscopy, which probably won't be for another 3 or so years.

I see Dr. Nagri on 4/6 and having additional labwork done this Thurs.

Keep us posted on your results.

Nancy

jmayk8 · Post by **jmayk8** » Tue Mar 27, 2012 3:31 pm

Wow Joe, that doesn't sound fun at all! However, I am def looking forward to hearing your results. Happy Healing.
Jenny

Post by **tex** » Tue Mar 27, 2012 4:31 pm

You're probably at least half a pound lighter this afternoon, just because of the removal of all those biopsy samples. I hope it left you with enough internal intestinal surface area to adequately absorb the nutrients in your food.

Looking forward to all the pathology results.

Tex

Lesley · Post by **Lesley** » Tue Mar 27, 2012 5:02 pm

Oh Joe! The expression "laughing your guts out" can't apply to you, right? You have had so much cut and sew this year. I hope this is it.

Joefnh · Post by **Joefnh** » Tue Mar 27, 2012 5:45 pm

Thanks ....

Tex: I got to see the samples in the little numbered jars and they are fairly small, the size of a few grains of rice each. This should be interesting to see if the CC pathology is widespread.

Jenny: its not too uncomfortable, just like being sore all over, but not really painful.

Nancy: Dr Nagri is great, he is willing to listen and willing to work with you to take advantage of testing like this.

Lesley: Your joke is keeping me in stitches...literally. This should be the last of it thankfully...

I'll probably just take tomorrow off and head back to work on Thursday... MIT has been great with this extended time off, being very supportive and not even bothering with vacation time or short term disability. I've been out essentially a month now.

Lesley · Post by **Lesley** » Tue Mar 27, 2012 5:54 pm

You want a travel partner? I would LOVE to go to Oz.

Joefnh · Post by **Joefnh** » Tue Mar 27, 2012 6:17 pm

Lesley this is my, I think 14th trip there and I can't tell you how many people I catch trying to stow away in my suitcase LOL.... It is a special place.

Lesley · Post by **Lesley** » Tue Mar 27, 2012 7:55 pm

Everybody I know who has been there loves it. I so want to go one day.

humbird753 · Post by **humbird753** » Tue Mar 27, 2012 7:58 pm

Joe, I am glad to hear your pain is not extreme. I can't imagine having a colonoscopy EVERY year! I look forward to hearing your results also.

Question - where is this OZ you guys are talking about?

Paula

Joefnh · Post by **Joefnh** » Tue Mar 27, 2012 8:03 pm

Hi Paula, Oz as would normally be in The Wizard of Oz ... In this case it's Australia or the land down under.

Oz = Australia

Gloria · Post by **Gloria** » Tue Mar 27, 2012 8:11 pm

Joe,

I'm still trying to visualize 35 biopsies -- that's a lot of cuts from your colon/intestines. I wonder how many samples they usually take. No wonder you're sore. I certainly hope that's the last of snipping for you. It will be interesting to know what they reveal.

It's great that MIT is giving you the time off. When you think about it, your other prospective employer in Oz might not have been so generous - who knows?

Gloria

Joefnh · Post by **Joefnh** » Tue Mar 27, 2012 8:27 pm

Probably not Gloria especially being a new employee. MIT is quite unusually generous in this case, not many employers here are this generous. Getting all of this work done here a opposed to Oz over the past 11 months is probably a good thing....basically my 50,000 mile tune up LOL

The 35 biopsies were spread out from esphogus to lower sigmoid colon, but even then things are quite sore, not really painful but kind of a bad ache. So far just some Tylenol with codeine settles it down.

Gloria I think they normally take about 3 to 5 biopsies during just a colonoscopy, I'm not sure how many during an upper endoscopy.

It was weird to see the tray filled with all those little bottles, knowing each was a bit of me.

I had shown Dr Nagri several of the study papers that Tex has pointed out over the last 2 years, including the papers on the patchy nature of MC. The Crohns you can see the active lesions easily, but before it forms lesions it has a patchy presentation of inflamed tissue as well. The goal here was to look for the following:

1.) Define the range of the MC throughout the GI system
2.) Define the range or presence of other IBDs through biopsy throughout the GI system
3.) Define the presence and range of the mast cells if they are an issue or not
4.) Define the boundaries of the remaining diverticula and biopsy the borders.

Tex a question for you, when the doctor wanted to biopsy the area around or near the border of the diverticula what did he mean by that, what is he looking for?

Post by **tex** » Tue Mar 27, 2012 9:09 pm

Joe,

I was wondering the same thing.

Recent research has shown that diverticulitis is associated with a chronic inflammation pattern that is similar to the type of inflammation connected with MC, (and possibly other IBDs). I would assume that's why so many of us with MC also have diverticulitis issues, but I have no idea if that has anything to do with his reason for sampling there.

Tex

MBombardier · Post by **MBombardier** » Tue Mar 27, 2012 10:37 pm

I'm sorry you're in pain, Joe. I hope you get some real answers.