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Sigmoidoscopy Tomorrow - Encourage me! TERRIFIED!

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Ulcerative Colitis
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Posted 7/19/2018 12:55 PM (GMT -5)
Hey guys!

I wanted to take a second to extend a huge thank you to this group. You've helped me through a lot and it's really nice to not feel so alone. It's great to have so many wonderful caring people in a singular location which tend to know what they're talking about as well as what you're going through. It's helped me so much, I can't even explain. Thank you for all you've done to help me. It means the world.

Tomorrow morning I have my first 'scope (sigmoid) since I've been sick. I had one in December and one in February. When I had both of those, I was so sick and in hospital care for so long that I didn't really care. I just wanted it to be over with, I was in so much pain and discomfort.

I've been on Entyvio since February and I'm feeling great, sort of like nothing ever happened. No cramping no bleeding, stools are back to normal, I'm REALLY grateful to be feeling so much better.

But I'm really nervous. I'm nervous about what they'll uncover, and I'm nervous about being put under anesthesia. I know it's no big deal and it feels like only 30 seconds went by once you wake up, but I'm still mortified?

Does anyone else have these types of fears about anesthesia?
Posted 7/19/2018 1:08 PM (GMT -5)
Nope....i have just enough to watch the monitor through the whole procedure. Ask for light anesthesia....not enough to put you out.

The results are what the are......worry is normal, and if it helps...go for it. On a rational level, it wont change the facts of what's going on.

Hsng tough....lthe scope for me is the OK part....medicated and watching the show and asking questions.

Request the doc take biopsies for sure. Ask he give you visual observation afterward in writing.

Looking forward to the update.

q
Posted 7/19/2018 1:19 PM (GMT -5)
Glad you're feeling better! I do not have any fears regarding anesthesia. Do you have any anti-anxiety meds you can take to help take the edge off? Certainly let the technician know of your fears and I am sure they'll be as accommodating as is possible. There's no sensation, they asked me to count to 10 when starting the anesthesia and I made it to "tw" without finishing the "two". I woke up, was a little confused that I was now in the Post Procedure Recovery room, and do not remember the procedure at all.

You're very brave with undergoing it despite the fears smile

Good luck on the scope, make sure to let us know the results.
Posted 7/19/2018 2:20 PM (GMT -5)
I had one sigmoidoscopy in my life and it was without anesthesia and trust me -- You want the anesthesia!!! it was the most painful experience ever. I actually look forward to being put out. I enjoy the "nap" after usually getting very little sleep the night before while prepping. Best of luck and let us know how it goes. Three scopes in less than a year is a lot! They usually have me count to ten, like iPoop said, but this time they didn't. The anesthesiologist will introduce him or herself to you (I've always had male anesthesiologists, but I am sure there are females out there!). Then he will tell you when he is going to start giving you the medicine in your IV. It only takes a few seconds, and then you'll be asleep. The anesthesia is the best part in my opinion -- lol! I get 30-40 minutes where I can relax.
Posted 7/19/2018 2:44 PM (GMT -5)
I've had numerous flex sigs without sedation.

When in a remission, their was no pain with the flex-sig. Just a bit of pressure and very mild discomfort from the air injected by the scope.

When flaring badly, it hurt a lot and it was fortunate the procedure is 5-minutes.

I've had various levels of inflammation in between, and it scales from minor pain to moderate pain depending on that inflammation that's present. That salt-based fleet enema is your best predictor of whether you will feel any pain from the flex sig, if the fleet is zero discomfort then expect the same, if the fleet hurts then ask for sedation in a heartbeat as the flex-sig will hurt for certain.
Posted 7/20/2018 5:10 PM (GMT -5)
Update! Just got home from the scope.

There's SO MUCH SCAR TISSUE!!! The pictures are insane... But my doctor says that despite the scar tissue that the lining looks great. She says there's mild inflammation only, but that they're going to push my Entyvio infusion sessions together, seeing as my levels came back a little low.

But so far, no cause for concern. They did take biopsies so I should be hearing back on those soon..
Posted 7/20/2018 5:13 PM (GMT -5)
That sounds very hopeful. I am happy for you. Good scope result, plus the option of increasing the dose frequency sounds like it will be the key! Great news. Enjoy the weekend!
Posted 7/20/2018 6:10 PM (GMT -5)
Hope the rest of the inflammation can be dealt with.

Was the scarring in specifica areas?

Looking forward to the results.

q
Posted 7/20/2018 6:47 PM (GMT -5)
Sounds like a good result. Congrats.

Was the procedure okay depite your initial fears (tolerable, better than expected, worse than)?
Posted 7/20/2018 11:31 PM (GMT -5)
Did you get the sedation?
Posted 7/21/2018 9:06 PM (GMT -5)
I received the sedation. The anesthesiologist actually gave me some smaller doses to make me a little loopy first for a while as opposed to just 100% knocking me out, which I never had someone do before. It was great actually! Everything went really smoothly.

I don't know if links work in here or if they get caught by the spam filter, but this was my result..

http://i65.tinypic.com/2vcjayg.jpg

And this was in December 2017.

http://i63.tinypic.com/2ep509e.jpg
Posted 7/23/2018 8:50 AM (GMT -5)
Good. Glad it went well.
Posted 7/23/2018 1:07 PM (GMT -5)
What do you guys think about the scopes?

This one is from Friday.

http://i65.tinypic.com/2vcjayg.jpg

This one is from December 2017.

http://i63.tinypic.com/2ep509e.jpg
Posted 7/23/2018 2:00 PM (GMT -5)
Don't know how to bring them up to see.....copy paste in google, images and address bar brings up nadda.

q
Posted 7/23/2018 2:43 PM (GMT -5)
Aw. No bueno! I'll type out what the doctors gave me as the results...

"Scattered mild inflammation characterized by erythema and pseudopolyps were found from sigmoid to transverse colon (Extent of exam) - Biopsies were taken with a cold forceps for histology. Localized mild inflammation characterized by granularity was found in the rectum. Biopsies were taken with a cold forceps for histology. Awaiting pathology results"

The scope looked A LOT better than previously. No blood, and I personally can't see/feel any inflammation. There's some thick scar tissue from the terrible flare I had, and you can see some localized pseudopolyps. But my question is, are these the scary polyps?
Posted 7/24/2018 7:40 AM (GMT -5)
In medical jargon "pseudo" means false, so you are talking about having false-polyps. First, a false polyp is not cancer, zero percent odds (only a real polyp has a chance of cancer). What are they? As a badly inflamed area heals, it often produces false-polyps. Over time, those false polyps fall off on their own; NOT necessary to remove them via endoscopy. Round about way of saying, it's nothing, will go away on it's own, don't worry smile

A few flex-sigmoidoscopies ago, I had some pseudo-polyps. My gasteroenterogist said pretty much what I did above verbatim. I had another flex-sig about 8-months later and those pseudo-polyps were gone.

"Erythema" means red in appearance. Picture a sunburn on your arm, that's an erythema and how it looks within the large intestine during endoscopy. Erythema is very shallow, very mild inflammation, and often just superficial from the prep itself. The prep for endoscopy is very, very harsh on the system and can leave redness (happened to me before, biopsies confirmed it was superficial). Erythema can be signs of very mild inflammation from UC, when confirmed via biopsy.

Granularity is a typical endoscopic finding for IBD. The mucosa surface is rough rather than smooth, more like sand paper. It's a sign of inflammation. The smooth mucosa surface erodes during flares leaving a rough appearance.

Post Edited (iPoop) : 7/24/2018 6:43:09 AM (GMT-6)

Posted 7/24/2018 9:05 AM (GMT -5)
Thank you so much for the breakdown of terminology there. I have a doctor's visit on the 31st to go over everything, so I'm a little nervous...
Posted 7/24/2018 10:00 AM (GMT -5)
Sure, glad to help. Nothing to worry about in those findings. All suggestive of very, very mildly active inflammation. It's like getting a B+/A- on a test, an admirable score, especially considering how hard this UC class has been in difficulty for you. I'd print that out and hang it on the fridge smile

How are you feeling? The findings suggest your UC symptoms should be very minimal at this time.
Posted 7/24/2018 10:06 AM (GMT -5)
I'm honestly not feeling any symptoms whatsoever. No urgency, no cramps, no blood, stools are solid. I honestly feel like I never even had a UC flare, which is INSANE and I never thought I'd get to this point with how awful I was feeling back in December.
Posted 7/24/2018 11:37 AM (GMT -5)
Great to see you've had healing. Although, you do still HAVE inflammation seen with granularity in the rectum.....and it should be treated with topical rectals.

Considering you have pseudopolyps in a large area, i would suggest you have another scope in a year or there-abouts.

q
Posted 7/24/2018 12:46 PM (GMT -5)
Yeah, since I'm a case study they're keeping rather close tabs on me, and will be doing so for awhile.
Posted 7/24/2018 12:50 PM (GMT -5)
Good to hear......but do you understand my suggestion? And what are they going to do for you? Hopefully, you still have a voice in this study. And what exactly is the study for specifically?

Keep us posted for sure.
q
Posted 7/24/2018 1:44 PM (GMT -5)
I have a whole booklet explaining it, back at my house. I initially didn't dig too much into it, as when I agreed to it I was extremely sick and just willing to ensure others could be helped from the results that the research would potentially yield. Every time I get bloodwork or biopsies, they take extras for their team, and each visit I do to the facility, I meet with their team and we go through various checklists and questionnaires together.

My UC was very aggressive and didn't respond to much (which put me in the hospital for almost three months) - I had to be transferred to various hospitals to actually get a decent plan on what to do to treat it. Prednisone didn't work, Remicade gave me an allergic reaction as well as liver damage, CMV sprouted, I was on the brink of going blind and developing neurological damage, I wasn't strong enough to receive any actual treatment at that point because my liver was so damaged and in such rough condition, yet the entire time I was still in a VERY severe flare and losing an extreme amount of blood. They nearly opted to remove my colon to try and put a stop to it all.

I was transferred to into the hands of the team at University Southwest in Dallas, which is what essentially brought me back to life.

Next week is when I have my follow up with my doctor in regards to what we're going to do in the meantime to supplement the Entyvio infusions being squeezed together. I was previously on Uceris (which I loved), and I currently have cort enemas at home (as well as topicals), and a bunch of other medications which they may add back into my treatment plan until the inflammation calms itself a bit more. But I'll have more details on that in a few days...
Posted 7/24/2018 4:12 PM (GMT -5)
The picture links worked for me. But I am a bit squeamish even looking at my diseased own colon, let alone someone else's.
Posted 7/24/2018 5:37 PM (GMT -5)
Ha! Totally understandable. I almost didn't want to look, but knew I had to for my own good.

My December 2017 one was pretty rough though. It terrified me.
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