Really Scared!

[Shelley327]

For the past 6 or so months I've had tickets to go see Fall Out Boy with my best friend this Wednesday. But instead I will be having a colonoscopy

I don't like to talk to my friends about my medical situation but I'm so nervous I just need a rant.

So my diagnoses and everything is a really long story. But I was finally diagnosed about a year ago when I was 20 after checking into the hospital weighing 73 pounds (I'm 5'9" so you can imagine). I spent a few weeks there re-feeding on the same program they treat girls with severe eating disorders, except since I didn't have an eating disorder and just crappy intestines I had to shove 5000 calories down my throat for months! (I'm now at a very healthy weight now )Oh and I have celiac's disease as well but that's been diagnosed for many years now. When I finally had my colonoscopy and was diagnosed with severe crohns they said there was no reason for surgery and put me on remicade which has worked wonders. I mean before I was going to the bathroom around 20 times each day and all through the night. I also had the most extreme pain of my life as many of you have probably experienced. I would have to restrain from punching holes in the wall and used towels to scream into. hahah I felt like I was experiencing child birth!

But now that I've been on remicade the pain is virtually gone. Excpet now there's been all these new problems. I started bleeding in October. And I mean serious bleeding! The bleeding isn't as bad now but it still happens about once a month and it's not going away. In fact I just bled yesterday. I think I have a skin tag or something also. I have no idea what's going on. I've been out of school for the year, although still on the deans list! I managed to take some online courses.

But I have this colonoscopy that I start prep for tomorrow and I fear for the absolute worst. I don't want surgery and I'm terrified. I have a very bad anxiety disorder so that doesn't help the situation, no matter the amount of meds. Everyone I've talked to with crohns or the doctors say I shouldn't be having any blood. so yeah, I'm just scared

also not to mention hating this upcoming prep :X

sorry for the rant!

 

[DJW]

Hi Shelley. You vent anytime you want and don't be sorry.

I'm sorry you're not doing well right now. I think the prep is the worse part.

Hope you can make the concert. Sending you my support. Hope you get remission soon.

 

[Shelley327]

thanks so much for the support, I hate complaining about my medical issues to anyone but I guess this is the place to do it

the concert falls on tomorrow night actually while I'm prepping so I'm fulling expecting my friend to live stream me some photos and videos. It'll be a nice distraction

At least this time for me the prep doesn't involve drinking so much of the fluids lol

remission would surely be a great thing

 

[ryansbronco]

First off your on the right track. Deans list while dealing with crohns. I have the hardest time keeping in school. Remi sure dose good stuff. I think as long as all of your labs are looking normal the bleeding is something else. Let the docs run some test. Try to have fun during the prep. I try to work on volunteer training online or reading the latest tech article. When in doubt vent away. Do you have a friend that you can txt when your at the hospital?

 

[Shelley327]

Thanks I was hoping to go back to school this fall but since I'm so close to my bachelors degree another accredited school called the other day and offered to help get me the rest of my degree with online classes. So at least my education seems to be going in the right direction

All my labs show the remicade is working and everything looks okay so I just don't know what it could possibly be. ugh time for answers I guess lol

I might be able to find someone to talk to. That would certainly help with the axiety

 

[ryansbronco]

I may try online classes this fall. I may need the Monday to Friday structure of regular class. Awesome on the labs. Fingers and toes crossed on the new test. If you ever need to chat you can send me a PM. During school I don't get to the site much, but I get notices on PMs.

 

[Shelley327]

GREAT NEWS! well..I consider it great at least since I was expecting surgery lol

well my prep was a nightmare. Whoever the genius was that made sparkling lemon flavored laxative was, I dislike them haha

But there was nothing concerning or that needed surgery. That was the positive. On the negative however, it didn't show improvement...my crohns is stubborn apparently. Although this was a new doctor and the last didn't take pictures or anything so it was hard to compare. It just still looked very bad, it just seems that my symptoms have changed. I guess exchanging the pain and frequency of bathroom trips with bleeding every now and then isn't too bad. He wasn't alarmed by the bleeding or anything that he saw. We're just going to up the dosage of remicade, and tomorrow I start another medication added in the mix

he just said in regard to what he saw "no wonder you're bleeding all the time!"

I was also not expecting to be awake during the colonoscopy haha that was weird

 

[ryansbronco]

Youll never look a lemons then same again. Do you know the added drug? It might be MTX. I would say Crohns is stubborn indeed. How did the concert pictures look?

 

[Weatherwax]

Ha, so I wrote this reply without checking the date or seeing your other message. What a berk! I'll post it anyway, since the part about the bleeding/skin tag may still be useful for you. And if not, maybe it will help/entertain someone else lurking on the forum...

***

Aww, hun. I have been in almost the same situation. I’m 23, female, and I have an anxiety disorder too. The good news is, I think I know what the bleeding is, and you probably don’t need to be as scared as you are.

My Crohn’s actually started with bleeding and serious pain – like, screaming pain – every time I went to the loo. I was about 16 or 17 when it started. I also developed a skin tag on my butt (which, like an idiot, I convinced myself was cancer for a while).

I went to the GP and it turned out to be an anal fissure with a ‘sentinel pile’ – which means, basically, a cut in your butt, with a little skin tag that develops next to it. They’re hard to heal because it’s an area that keeps stretching and moving about – think of making a snip in an elastic band which opens every time you stretch it. If you Google it, you’ll find some not-that-detailed medical information and lots of people telling horror stories about theirs not going away – DON’T PANIC. I read this stuff and worried myself sick. Mine went away! It took a while, but it did. It’s really important, especially if you’re an anxious person, to remember that people who post on Internet forums tend to be people who need to! People who are fine and getting on with their lives don’t need to rant to strangers

Anyway, it was a few years from then that I started getting stomach pains, bad diarrhoea (I always had what you might call an unreliable tummy, but in March last year it really upped its gears) and all the other delightful things Crohn’s brings. And it was a year later that I finally got diagnosed with Crohn’s – my GP was very slow on the uptake. When I was really ill, I weighed 7 stone (about 50 kilos) and I’m 5’7”. And I was REALLY ill – couldn’t walk down the road to the bus stop due to exhaustion, got so anxious about everything (not having a diagnosis for a year didn’t help) that I didn’t talk to my doctors properly about my symptoms and ended up in hospital for two weeks. Not clever.

Colonoscopies, I have had twice. The first time, still undiagnosed, I was utterly terrified. I still had the fissure at that time and I did not like the idea of a camera wending its creepy way up my poor injured butt. Well, who would? I wound myself up about it royally before the test, which was bad idea number two. I did the prep, in the bathroom of a shared house which I lived in with three girls I didn’t know, hogging the bathroom for seven hours with no explanation as I was too embarrassed – bad idea number two. This did not win me any friends. I then went to the colonoscopy on my own, which was bad idea number three, and was nearly having a panic attack by the time I went in. Bad idea number four was not having requested sedation. Yeah, it hurt. A LOT. They gave me gas-and-air, which as it turns out makes me swear at doctors in, for some reason, an Irish accent.

Despite hurting a lot, it didn’t leave me with any kind of lasting injury. The fissure didn’t get any worse, which had been my main worry.
So the next time, a year later, I was prepared. I didn’t worry myself too much beforehand, since what was the point? It wasn’t going to do any more damage than the Crohn’s I now knew I had, and it might open up new avenues of treatment to make me better. I did the prep in a shared house again, since that was my only option – at this point, I was living with my boyfriend and our male friend, which was even more embarrassing. I’m ridiculously easy to embarrass, so I just told them “I’m having a super-fun endoscopy tomorrow, and I have to drink a ton of preparation liquid that might make me, um, throw up and stuff, so I’m going to steal the bathroom for most of the evening. Mind going out?” So they went out and I camped out in the loo with Moviprep, a giant jug of water and some flavoured lollies to break the monotony. It wasn’t that bad. I try to think of it as character-building…

Then when I went to the colonoscopy, I took my mother with me (not into the actual test…but to the waiting room) and said to the nurse, “I’ve had one of these before and it was extremely painful. I also have anxiety disorder. Could you please make sure you give me loads of sedation?” So I had a LOT of sedation, and she kept talking to me all the way through to take my mind off it, and it was a lot easier. I think it still hurt a little bit, but the great thing about LOTS of sedation is that it wipes your memory. So I don’t remember the test, which is basically like it didn’t happen (I have met the doctor who did it since and spoke to him for forty minutes before realising he was the man who put a camera up my butt – thank goodness for the amnesia, or that would have been pretty cringey).

If you really, really are worried about it, you can tell your consultant you won’t do it unless you’re unconscious. Tell him you have a fissure and you’re concerned about the pain, and that you have anxiety. They don’t like to do this, but it is done. I did this the second time – the only reason I didn’t have it under general anaesthetic is because I ended up in hospital unexpectedly, things got a bit complicated, it got rescheduled at short notice and by that point I just wanted to get it done with.

I’m now on Infliximab infusions and tapering off steroids, and I’m happy. Not completely in remission yet, but happy. It’s always worth remembering that it’s all temporary… the colonoscopy isn’t fun, but once it’s over it’s over and you’ll be happier as a result of getting the right treatment.

You’ll be OK x