Vent on GI Office, Testing & Being More Confused Than Ever!

[xJillx]

I need to have a MAJOR vent. I had testing done two weeks ago – flex sig and pill cam. My husband and I suggested doing a colonoscopy being it offers the most accurate results, but my GI said the two tests should be sufficient. Well, what did I learn today? My GI wants to do a colonoscopy now! And how did I learn this? By getting a call from the secretary to schedule the procedure! When I told her this was news to me, she got a bit flustered told me she’d call back. Sure enough, in less than 10 minutes, my GI’s nurse calls to apologize saying she was to call me first to give me my results and tell me about the colonoscopy. You have got to the love this service (I have had numerous issues with my GI’s office with lost paper work, scheduling issues, etc.)!

Also, I have got to vent about my results and how I am more frustrated than ever! Mild inflammation was found in my rectum, but biopsies were normal. Pill cam showed mild inflammation at the end of my small intestine and in “end” of my colon (wherever that is - I should have asked specifically, but my mind was all over the place). However, she is unsure of the images and is even questioning if the prep could have been the cause of some/all of the inflammation. Therefore, she wants to get in there to hopefully get more telling biopsies. I am so sick of all of this testing! The prep kills me, it takes me days after to recover, and I can’t keep taking off work for all these tests. And what is worse, at this point, it seems like my GI is back peddling on her diagnosis. How can that be? I have so many symptoms and visible inflammation (and though the inflammation is mild, mind you, I am on Lialda & Canasa) So, just because biopsies come back normal, I am fine?! It seems like the more testing I do, the more confused I get! Ugh!!!!

 

[idreamofpeace]

(((((((HUGS))))))))

This too shall pass!

 

[sherry3535]

Jill,
I am so sorry to hear all you are going through! I understand all your frustration and I really hope that your doctor figures it all out! I really don't understand the whole thing with the biopsies, cuz I am going through the same thing! Mine came back "normal"! How is the new med working for you? I am curious because I really think I need something lile that because I know my rectum is all inflamed and hurts really bad again! But I don't know what to do cuz I am not doing well! I think I am going to try to get to tje er in Boston this weekend! I hope they can help me! So when I your colonoscopy scheduled for? I really hope that you get some answers and soon cuz it sucks not having answers! Good luck hun! I am thinking of you. (((HUGS)))
Sherry

 

[StarGirrrrl]

I'm sorry to hear that, and while I don't see anyway around it now, it can be useful in the future, ie "well last time you suggested a half-test it did not work, I only want the full test, no ifs ands or buts" etc.
I do feel for you, the colonoscopy prep was much worse than the flexi sig

 

[margie]

I am so sorry that you are having to go through all of these tests too. The preps are so horrible and you are right, sure takes time to recoup from the preps themselves. I sure hope that you get some answers soon too. You will be in my thoughts and prayers that you will now get some answers with the colonoscopy.

Keep us posted!!

Hugs

 

[xJillx]

Thanks, guys, for the support. I have yet to set up the colonoscopy. We are taking it one step at a time. Actually, my GI said we should first test for Celiac, if I hadn't been tested already with my former GI (I don't know if I was, so she needs to go through my file, and goodness knows how long that could take).

But, honestly, I don't know how eager I am to set up the colonoscopy anyways. I have a strong feeling we won't learn anything new - biopsies will come back normal and if any inflammation is found, my GI will still question whether it was caused by the prep. I feel like we have done enough for now. I think if there was anything of major concern the pill cam would have picked it up. So, would I be harming myself to wait another month or so? I just need a break from testing for a bit. It is taking a toll on me mentally and physically.

 

[xJillx]

Jill,
How is the new med working for you? I am curious because I really think I need something lile that because I know my rectum is all inflamed and hurts really bad again! But I don't know what to do cuz I am not doing well!

I am so sorry you aren't doing well! And I can sympathize with the rectal pain & pressure. I have been on these nightly enemas (Rowasa) for just over a week, and I haven't seen an improvement yet. Actually, the first few days were pretty tough (more BM's, gas, pressure), but I have noticed this is the case when starting any new medicine. Things are calmer now, but again, no positive changes yet.

I used to take Canasa (suppository capsule) nightly, and that did the trick for a few weeks until I was told to wean off. Since then, I haven't gotten much relief. So, I suggest asking your doctor about the options. And if it seems to work for you, stick with them, even though I know it isn't ideal to put stuff up your butt each night. Please keep me posted on what you decide to do!

 

[StarGirrrrl]

If you feel you need a break Jill then certainly have them book it for a month's time

 

[Astra]

Aw Jill hope you're ok?
It would be a good idea to put it on hold for a bit, just so you can get your breath back!
Take it easy
xxxx

 

[margie]

Sure hope you start feeling better soon Jill. Hang in there.

Hugs