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Pep Talk Needed

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Crohn's Disease
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Posted 12/14/2009 2:02 PM (GMT 0)
I know I'm still relatively new here, and I feel strange asking for a pep talk, but here goes.

I've had CD for at least five years (probably a lot longer) and am currently in what is now a five month flare up. Tomorrow is colonoscopy/endoscopy day. I went through a colonoscopy once five years ago, which is how I was diagnosed, but it hasn't stopped me from being incredibly nervous, even 24 hours before. It's like... on top of all the worrying about the silly prep... then worrying whether you're going to wake up and be lucid during the procedure... then worrying you won't wake up at all... then worrying about complications... I'm terrified about what they might find. I know that sounds crazy since overall I'm feeling better than I was over the summer.

But unfortunately this last two weeks I've got a UTI, which has become apparent is likely from a fistula to my bladder. How do I know? TMI moment......... I've got air coming out male places that it shouldn't......... and the infection is very slow to respond. So to me it's like "if I've got a fistula now, what else is going on"?

So...? Oh yeah, I said I needed a pep talk. Do you worry about all this stuff when it's your time for a colonoscopy? I feel like such a whiner, or that I should be toughing it out because it's not really that bad. And the truth is, overall it's not that terrible to go through. They shoot you up, you go to sleep, you wake up and you fart. And then it's over. And the slightly ironic (kind of) thing is my abdominal pain which has been present and horrible for well over four months has been subsiding since I've been on these antibiotics (Bactrim and Flagyl) for the UTI/suspected fistula. It's all this worry and anxiety that's making me nuts. I try to comfort myself with the fact that what I"m going through isn't that bad comparatively to what many others face. But I get tired of doing that. Then I feel really rotten.

Finally, I haven't decided whether I'm going to flavor my drink. I drank it plain last time (it's the stuff that's like a gallon of heavy salt water) because I don't do artificial sweetener, but they told me I could use a sugared powder drink like Kool-aid to flavor it. Has anyone done this? Does it make it any better? Sometimes I think I'd rather just drink crap than drink lime flavored crap. Anyway, sorry for ranting. Thanks loads for anything you can say that might make me feel better.

Post Edited (DaytoDay) : 12/14/2009 7:05:25 AM (GMT-7)

Posted 12/14/2009 2:23 PM (GMT 0)
Hi DaytoDay,

I don't know if I have the words to make you feel better, but I wouldn't beat yourself up for getting nervous about the procedure. I had my first and only one done this summer when I was diagnosed, but I was so sick and out of it that I didn't even really know what was going on. I actually didn't find out until the night before that it was a procedure that I had to be put under anesthesia for. Had I known about the possibility of waking up during the procedure, I probably would have worried a lot more.

I think your worries are normal. When the time comes that I have to get another, I'm sure I'll feel as much anxiety as you. It's just fear of the unknown. Hopefully the worst part for you will be drinking the nasty prep. I didn't have a choice of what to flavor it with, and whatever flavor they gave me tasted like a lukewarm salty lemon cough drop. Ugh, the thought of it makes me want to puke. Hopefully you can get something better tasting than that.

Hang in there and keep venting if you need to. Just think, it will all be over after tomorrow. Good luck!
Posted 12/14/2009 2:31 PM (GMT 0)
Thanks OG. I appreciate it. Hope you're doing ok.
Posted 12/14/2009 3:39 PM (GMT 0)
Sometimes this dd (darn disease) can just get too overwhelming and we will develop either anxiety or depression related to the Crohns. My recommendation is talk to your family doc about how you are feeling. I was prescribed Xanax .25 mg (lowest dose) to take on those days things get too overwhelming for me and I start worrying about all the what if's. By the way, I suspect you are suffering with anticipatory anxiety. That is when you are always worrying about all the what if's. I also started seeing a therapist. Both have helped immensley. I only use the Xanax maybe 1-3 times a month. Just take it at the first hint, and it stops the anxiety in its tracks. Hope that helps a little.

Hugs
Gail*Nanners*
Posted 12/14/2009 3:43 PM (GMT 0)
Sorry you are anxious about all this! I am actually the opposite, by the time I have to go in for a colonoscopy I am usually so sick that it is a relief - you have the doctors and nurses taking care of you, they give you IV fluids (which I usually desperately need at that point) and help you rehydrate, they give yo pain meds and generally take care of anything else you may need. It is really the best way to see exactly what is going on inside your body so there is no more maybe this, let's try this, etc. And I have woken up in the middle of the colonoscopy and it wasnt a big deal, I remember looking at the monitor then the nurse upped my dose of whatever it is that sends you back into conscious sedation. Years ago I had a sigmoidoscopy in my general practicioner's office with no sedation and no pain medication. It was one of the most painful things! They don't even do them in dr's offices anymore they are so awful.

Aside from the prep, I think they are no big deal. I hope this makes you feel a little better! Good luck!
Posted 12/14/2009 4:12 PM (GMT 0)
Hi DayToDay,

I had the exact same worries for my first colonoscopy.  Now, many colonoscopies later, I can safely tell you that there is no need to worry.  In my first colonoscopy I did wake up during the proceedure (which, like you, I had feared) and all that happened is the nurse said "look up here" and I watched the rest of the proceedure on the monitor.  The doctor took a few biopsies and removed a few polyps, and the worst thing I felt is best described as a little tug inside when he did the biopsy.  This was in the middle of a bad flare where I had an abscess on my bum the size of a baseball (it burst in the hospital later that day) and multiple fistula in the area as well.

My second colonoscopy I wasn't quite as scared, and I actually was aware for the whole thing.  I can remember the entire proceedure from the very beginning to the very end, and I never felt a single tinge of pain (except a single tug, like before, when they took a biopsy).  Since then, every one has gone smoothly, sometimes completely under for it, but usually fairly aware of the proceedure.

What I'm trying to say is - don't worry!  Even if you do wake up, the staff is very well trained and you will not feel any major discomfort.  Sometimes they will up your dose and put you right back under, sometimes they will let you stay a little awake if you're ok with it.  There are some people on this forum who have undergone the entire proceedure with no sedation at all, and I have seen the pain of such a proceedure described as a "4 out of 10 at worst, and only for a few seconds".

Just try to be calm and cheer yourself up a little by knowing this will help your doctor help you.

Hope that helps a bit.

Posted 12/14/2009 4:15 PM (GMT 0)
Wednesday and Gail... thanks, you two.

Gail... I've always been the anxious type... it seems to follow us Crohnies around. Good to know that meds are an option for it, but I am so, so sick of meds. Talking to someone would probably help, too.

To Wednesday... I appreciate the pep. It really does help hearing from others. I had a sigmoid a while before the first colonoscopy.... no sedation... no painkiller... doctor's office... and you are correct. It was horrible!!!! I actually cried afterwards. Not so much from the pain, but it was such a violation and so shocking when it was over. In fact, sometimes I get Crohn's spasms and describe it to my wife, "it's like when they did the sigmoidoscopy". Thanks again.
Posted 12/14/2009 4:19 PM (GMT 0)
JF... thanks for the advice. I think I will warn them in advance that I want them to put me back under if I wake up! I feel like such a child. But it's good to know that it's not so bad if I do. It really helps to ease the tension. Again, I hope all of you are doing alright yourselves... thanks.

Post Edited (DaytoDay) : 12/14/2009 9:29:02 AM (GMT-7)

Posted 12/14/2009 7:26 PM (GMT 0)
I don't really worry much about things such as those. I have enough stress and whatnot to deal with without adding to it. They may come into my mind but I just play them off and hope for the best.

Just a tip - limit yourself to eating very little and/or liquids the 24 hours before the procedure. I'd rather drink 10 ounces of that crap than drink a whole gallon.
Posted 12/14/2009 8:15 PM (GMT 0)
Thanks pimfram. I'm prepping as we speak. The drink (unflavored) isn't as bad as I remembered, but it's getting worse by the glass.
Posted 12/16/2009 4:02 AM (GMT 0)
Hello everyone. I'm back. The procedures went fine. I was somewhat conscious for both procedures... uncomfortable, but not too terrible....

Right. So when the doc got to my terminal ileum with the colonoscopy, it was so inflamed and scarred that he could not get it through any further. He said it's not an emergency, but he thinks he's recommending that I get about a foot of my terminal ileum removed. He's going to talk to the surgeon and phone me in the next couple of days. Meanwhile, they're going to do a CT scan to see if my bladder fistula is coming from there, or where it might be.

I believe they call this operation a bowel resection. The last op I had was 25 years ago (hernia) and it was a miserable experience, so of course I'm worried. But then, I was worried about a colonoscopy!

I know there's lots of resections on here... I'd be glad to hear experiences/advice etc. He said there are some other small patches, but this is the main diseased part. I've read a lot of people saying that the op gave them a new lease on life. I'm hoping that's the case with me obviously. I haven't done a lot of reading on what the recovery is like. And I'm taking it this isn't an outpatient procedure.

The other question I had was should I be getting a second opinion? I like my GI doctor and because of that I'm "stuck" with his surgeon... what is the normal thing to do? With so much inflammation and my Crohn's history, this seems like a pretty cut and dried case, but I really don't know. Do I trek out two hours to Boston and go for "the best"? Just because someone's in Boston, does it mean they're the best? I don't know the protocol here. I've never needed something so serious as an adult. I know no one can tell me what to do, but if there's any advice I would appreciate it.

Thank you.
Posted 12/17/2009 1:51 AM (GMT 0)
I had a resection in April of this year and they took out around 30cm of my terminal ileum and a bit of the colon. It has definitely helped, though at the join the ulceration is already returning.

I actually had two surgeries within days of each other because they missed or created a hole and I was leaking into my body, so I was in the hospital for a longer time. After my op I had an epidural to help with the pain, but it stopped working when the tube shifted. Let me tell you, you do not want to feel the actual amount of pain you are going through.

But the doctors soon gave me a pain pump and I was back on track (It’s harder for me as I’m allergic to Morphine and Codeine). I was walking all hunched over and couldn’t lift anything heavy for a long time; it takes about three months until your muscle is knit back together on the inside. And after being in the hospital for three weeks I was painfully thin and had no remaining muscle mass.

But it was worth it. I have a kickass scar and I am finally feeling like I am living my life how I want to, not just how I can manage to.

Your ulceration is permanent, and if your bowel is that small there is no natural reparation. You have more than one problem going on but if surgery can help you in any way, and it sounds like it can, you should continue learning about the resection procedure and seriously consider it.
Posted 12/17/2009 6:32 PM (GMT 0)
Thanks yt. The info helps. I'm really overwhelmed at the moment. I still haven't heard back from my doc (he said he was going to talk to the surgeon) so I don't know what the recommendation is or the timeline or anything. I'm just in limbo and it's killing me. I'm happy that I have this as an option (so-called), but I'm incredibly frightened about my future.
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