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Freaking out about flex sig/egd

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Crohn's Disease
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Posted 12/3/2013 6:52 PM (GMT 0)
I have both procedures this Friday. I am so anxiety ridden. I just had a colonoscopy in August revealing proctosigmoiditis and suspect distal colitis. Upped humira and was given cortifoam. During this my reg GI sent me to University of Chicago for a second opinion. I only had modest improvement with their recommendations back in Sept. My reg GI pretty much gave up on me so they've taken an interest in me. Because of the modest initial improvement and an episode of nausea and loss if appetite they want a flex sig and egd. I lost about 5 lbs

The past weeks though ive been constipated followed by diarherra. So i think im getting better? The stool almost always has mucous or sometimes is just white beige. I also have blood in the stool on the paper and in the toilet though it seems less frequent. I have had an outbreak of mouth ulcers and the red bumps on my shins that come and go.

I just feel like this is going to be a waste of time. I mean couldnt it just be hemmoroids? Not to mention i have not had a flex sig in 9 yrs. i was 15 at the time and i screamed and cried so much they had to stop. Though im supposed to be sedated for this. I know im an adult now but i literally cry like a baby in the procedure room because i remember that traumatic experience.

Based on my symptoms do you all think i need togo?
Posted 12/3/2013 7:02 PM (GMT 0)
I think you should go, I know that's not what you want to hear but honestly, take it from me who hasn't been checked in 9 yrs and now I've developed a recto-vaginal fistula. Demand to be fully sedated, there's no reason to suffer through the tests....I demand it because I have very painful perianal crohn's skin tags and always have inflammation (I've never been in full remission) so even for a sigmoidoscopy I get fully sedated or they don't touch me.
Posted 12/3/2013 7:08 PM (GMT 0)
Sorry that you do freak out. When I was at your age, I feared a lot of procedures, tests and injections. I started my GERD at the age of 21 and had to have an upper endoscopy and I kept refusing to have it. As a result, I was put on wrong medication and GERD has become chronic w/o any cure and now I have to undergo a lot of upper endoscopies to rule out any complications (from 2007 till now, I had 5 upper endoscopies, 3 colonscopies, 1 enteroscope and 1 fleg/scope). When I had my first endoscopy after 9 years and the first colonoscopy, I realized how mistaken I was. I exaggerated my fear throughout these years and if I went back in years, I would have it done.
They will def give you a sedative and you won't feel anything. In the procedure room try to breathe very slowly to get rid of anxiety. Ask your doc if you can have a family member who can accompany you in the procedure room (though my GI doesn't allow it) until you fall asleep taking in consideration you are very anxious.
Hope everything goes on well :) Keep us posted.
Posted 12/3/2013 7:14 PM (GMT 0)
Thank you both. Ive had close to 10 colonoscopies and i dont remember a thing except that flex sig. I havent had the egd in 3 yrs so i guess its a good idea.

I guess im just a high strung 24 yo lol.

So you a think based on my symptoms-even though i may be improving should just go?
Posted 12/3/2013 7:23 PM (GMT 0)
Yes :)
Posted 12/3/2013 9:33 PM (GMT 0)
Definitely still go - even though symptoms are a bit better, sometimes there are things going on that don't show up as symptoms, you know?
Posted 12/3/2013 9:34 PM (GMT 0)
I definitely think you should have the tests. You are not in remission and they need to figure out what to do. You should ask for as much sedation as they do for a colonscopy and you should be fine. Did you have your previous flex sig without sedation? That may be why it was traumatic. I didn't get diagnosed with Crohn's until my late 40's, but when I was a kid I suffered from chronic constipation. I had a proctoscope exam with no sedation when I was around 7 years old. (I don't even know if they do those anymore) It is one of my most traumatic childhood memories, so I can relate to your fears, but with sedation, you should be just fine. The Egd is no big deal, and you won't remember anything. Good luck and let us know how you do.
Posted 12/3/2013 11:19 PM (GMT 0)
Yes, I was 15 and I had no sedation or pain meds for the first flex sig. The doctor was how do you say-not good with kids/teens. Totally scarred me.

I'm just going to buck up and do it. Weird thing is my prep. I had a nurse and fellow give me too conflicting opinions. Dr said clear liquid diet the day before and 2 fleets 4 hrs prior. Nurse said no food after midnight and to give a fleet the night before and day of. She called the dr and I'm supposed to do it his way-she said that's very unusual prep for flex sig/egd? My appt is at 8 so I have to do the fleets at 4am. Do they work instantly-how do you know you're cleared out enough?

gumby44-what do you consider remission-just curious?

Thanks!
Posted 12/4/2013 2:32 AM (GMT 0)
Remission is the absence of any Crohn's inflammation. So technically, you should have normal blood/lab tests and normal looking results on a colonoscopy, small bowel, and upper GI studies. You are saying that you have alternating C and D, mucous, blood, mouth ulcers and red bumps on your shins. To me, that tells me you still have active inflammation and therefore are not in remission.

I have IBS along with my Crohn's. So I can be having C or D and still be in remission. So I don't always call myself in a "flare" unless there are changes in my labs, like anemia, or if there are abnormalities in my colonoscopy or small bowel studies. I know it's all so confusing. I hope your docs sort things out for you.

How do you like it at U of C? I am from northern Michigan, but I grew up in Chicago, and I'm thinking of going to U of C for a second opinion if my anemia comes back.
Posted 12/4/2013 3:23 AM (GMT 0)
My referring GI always said I had concurrent IBS with IBD. He was convinced I was always ill/flaring when a new semester started. But I finally finished college and when he gave me a colonoscopy in Aug my WBC was 16 and I had an elevated crp. I have not had labs since Sept and my WBC was 12.5. The U of C docs ordered a c diff but it was negative-I figured since I had that when I was 14-15 and missed like 3 months of school.

Anyway, the doctors at U of C seem interested, especially the fellow. I never had a GI doctor be so kind and willing to help me-actually saying we're here to make you better. The main doctor I saw was pretty straightforward but nice-he asked me about my life etc and seemed quite pleased that I made it through college lol.

My referring GI is in his early 60s and over the past year I feel like I have been dismissed-he's been my doctor since I was 17 and really brought me back from the brink but I feel like he's tired and has kind of thrown in the towel with me. For example-I was in the hospital roughly this time last year and he only saw me once plus admitting then had his partners see me because he was tied up. At my first appt after the hospital he asked if I wanted to switch to his female partner to feel more comfortable. And now that he's referred me to U of C he barely responds. Everytime I have asked a question I am told I need to consult with the U of C doctors. I finally asked if he's moving on from my case and he said no, but its just been mixed signals.

So they decided they wanted these tests. I live in the west suburbs of Chicago so its not a horrible hours long commute-except in rush hour ha. But it's definitely not as convenient as my local hospital.

But if you're looking for a second opinion I would recommend for sure-I think they're one of the top referral centers and have the world class IBD docs.

Thanks for ur advice!
Posted 12/4/2013 1:46 PM (GMT 0)
Thanks kix,
Thanks for the advice, and I hope all goes well for you. I lived in Downers Grove for 9 years after I was first married. I think maybe you should just transfer all your GI care to U of C even though you have to commute there. In an emergency, your local GI can back you up, but you are only 24 (my son's age) and you have the opportunity for excellent care. I'm glad you made it through college too!
Posted 12/5/2013 3:42 AM (GMT 0)
Gumby i live in Elmhurst! Small world. After i see how these procedures go i may make the switch
Posted 12/9/2013 2:49 AM (GMT 0)
So I did the procedures..hiatal hernia on the EGD which is causing my acid reflux/no appetite/ nausea.
Flex sig-severe colitis in the lower colon, apparently a lot of active bleeding and mucous. Humira seems not to be working. Doctors are testing me for some things to see the best course of action.

They also said I need to seem them exclusively now-couldn't have been more happy with that, that they actually want to help-after being dismissed by my GI for about a year. Looking thru my records the hiatal hernia showed up almost a year ago on a CT scan and he never said anything about that causing my nausea, acid problems.

Very pleased with the whole experience in contrast to all my other scopes at the other hospital. I was actually treated with dignity, respect and kindness. Very glad for all your words of wisdom urging me to go thru with the test even though I thought I was getting better..yikes. Last night I had an episode of 10x diarrhea and bad pain in addition to the 5x I had already had that day. Still having some chest pain though but I'm guessing its from the irritation of the tube and biopsy in my esophagus? Or should I be concerned?

Thank you all for the encouragement!!
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