Colonoscopy Hell

[karj]

Hi all

I haven't written in this forum for a while. I just wanted to share my experience that I had with the colonoscopy I had on Tuesday. It was the worst ever. Now I would not consider myself to have a low pain threshold. but jesus this was the worst ever, it was my 4th time having one so I thought it was going to be the same as all of the others. I also had a small bowel xray a few weeks ago because they want to reassess the crohn's to see where exactly I am flaring from. I am bleeding alot lately and occasional pain. Oh and I wasn't too impressed on Tuesday when they had written down in my notes that I have 'occasional' bleeding. I bleed 3 or 4 times everyday, sometimes more, how is that occasional? Anyway I took the prep went in on tuesday, drank loads of water wanted to make sure the procedure was worth it. I was awake from start to finish. I never ever was in so much pain. Last time I woke up during, this time I felt everthing from camera going in to the finish. They took biopsies and everything. I could see my bowel on the screen I remember seeing pink and then I saw the bad bits with yellow and I remember seeing a dark bit aswell, I don't know what that was. I remember practically roaring with pain and crying, I squeezed the life out of one of the nurses hand. They gave me more sedation during but it did no good and then the worst ever was when they went down my right handside, that is where i sometimes get a dull ache. they put me on my back then, and once the procedure was over I slept like a baby. but I remember the whole thing. when my boyfriend came in to collect me i was sobbing in the waiting room having my tea and biscuits. they decided to increase by dose of pentasa and put me on predfoam. they took biopsies, and I have to wait 12 weeks for an appointment. I hope my G.P will get some info before then. Have any of you had this experience. Is the pain bad only when inflammed or is it bad anyway? I don't know if I will ever go for one again :thumbdown:

 

[Dexky]

Why the hell wouldn't they sedate you?? It just seems very unnecessary to put someone through such torture. I hope you don't have to wait 3 months to have some action plan. Things can change too much in that length of time! Good luck!

 

[karj]

Got my appointment today for mid november so I guess they are just waiting to see if I react well to the increased medication. I don't know why they didn't, maybe they didn't wait long enough for it to kick in, they did give me an injection and I slept afterwards and again at home but I guess it wasn't strong enough.

 

[handle]

Sorry you had to go through that. The pain would have come from air being introduced into the bowel, to give them a better view. Your guts don't feel pain other than from expansion or spasm. The nerves there don't respond to cutting, tearing, burning etc. Sadly your doc probably overdid the air. Distension pain is really bad as we all know! You should not have any lasting effects though. Sounds like they were a bit incompetent, and if you go somewhere else you will likely be better off!
Hope you can relax and concentrate on getting better.

 

[Carrie630]

I'm sorry you had such a hard time! Mine is in just under a week, and I'm so worried it'll suck!

The black thing you saw may have been an ulcer. They can have black and white bases depending on severity.

 

[StarGirrrrl]

We only get twilight sedation in the UK- OP is in Ireland so this may apply to them.

I'd make a complaint if I were you, seems like alot more effort could have been made to make you comfortable.

 

[hannah-rose]

I had 'twilight sedation' and I cried with pain during it and my bowel was healthy - I can't imagine how horrible it must've been for you I would complain too. If I ever have another I'll demand they up the sedation dose.

 

[Grant]

Karj, the reason they may not have sedated you totally could be because you have adhesion's from previous surgery. With them the procedure can be difficult & require a lot of moving by you including going on your back, front, LH & RH side etc.
Rgds
Grant

 

[sunflower]

I had a twilight one once. It was horrible. It was only a sigmoidoscopy, not the full colon. And, I beg to differ on the nerves. I could feel the biopsies. When your bowel is ulcerated, you feel more than just pressure. Especially toward the rectum and on that side. How else could you control your bowels if you can't feel them? I know the doctor commented, "It's as if you could feel what I am doing! Every time I take a snip, you moan as "if" you could "actually" feel it!" Grrrr

 

[handle]

The rectum has nerves that feel burning cutting etc, the rest does not, only distension and spasm.

 

[Mountaingem]

:stinks: So sorry you had such a rough time! Unfortunately I've had a similar experience; it freaked me out so much I refused to have another, until I was hospitalized.

I would recommend telling your GI everything you said here; that way it goes on your chart. The next time you need one, insist on being sedated. If your GI won't do it, find a new one. It is totally unnecessary going through that much agony.

I've had 3 since the aweful one, and each has been under sedation with various meds, Propofol being the best for me.

I hope the meds start working right away for you, sending get well wishes!:rosette2:

 

[karj]

Thanks for all the replies! I don't feel so bad now. Grant, I haven't had surgery in my bowl yet thank god. My consultant has been slow to go down that route with me yet. Hopefully the pain will have been worth it if they have prescribed the right dose of meds. Just can't understand how hospitals differ so much with this. The first time I had this done, the first I knew about it I was back in the bed having my tea and toast! This is the first time that I was aware of the whole thing from start to finish. It was a different doctor this time, he is only there for a year i found out so hopefully I won't ever come across him again . I think he was mad at me anyway. I don't know what the rest of you will think of this but before I had the tests I came off all meds for 3 weeks. My doctor wanted to reassess the crohn's because I have been discussing the possiblity of having a family with him. So I didn't see the point in doing all of the tests if the medication I am on was going to cover up the exact places in my bowel where I am flaring. Maybe that was stupid but my own doctor would have understood my reasons, where as this guy seemed to be totally peeved at me. I just don't understand how they could reassess me properly otherwise. i thought that if the crohn's was localised that maybe surgery would be a better option for me.

 

[Dexky]

My doctor wanted to reassess the crohn's because I have been discussing the possiblity of having a family with him.

I hope your boyfriend doesn't mind

I can see your point as long as you weren't on one of the biologics. What meds were you on?

 

[KJS]

That would've been tough. I have a colonoscopy 2 yearly now and haven't had a bad experience since I changed docs. I'm always sedated with an hypnotic drug (can't remember name) so if it uncomfortable I have no memory of it. Previous times I've had discomfort when the scope gets twisted/knotted/looped! You may have an intolerance to the sedation they used? I'd rather have the bloody colonoscopy than the prep.

 

[karj]

I hope your boyfriend doesn't mind

I can see your point as long as you weren't on one of the biologics. What meds were you on?

:ybiggrin: haha. I can see how that could have been read alright!

I am on pentasa. He put me on predfoam aswell since colonoscopy. He has tried me on other meds but I didn't respond well to them. Don't really respond well to steroids either.

 

[Mountaingem]

IDK, maybe he thought it was too risky for you to go off the meds. I can see your point, but I've gone off the meds before and paid dearly for it. Since you haven't had any bowel surgery maybe he felt you were risking serious complications you might not otherwise have if you stay on the meds. Usually damage will show whether or not your on the meds; so will inflammation. It shows up in the bowel long before the symptoms start.

If you are uncomfortable with your doctor for any reason I would trust my instincts and switch to someone else.

 

[Artificial]

Hi Karj,

I was awake for my colonoscopy to and also found it very painful!

Rachel x

 

[Rebecca85]

I felt my biopsies in the ileum, but it was more of a tugging than a cutting sensation. So I presumed it was the nerves outside the bowel responding to the movement of the wall. As for going off meds, I was on pred when mine was done and the inflammation showed up fine. I guess if you're having symptoms while on meds, stay on them for scopes etc because then they can decide how well the meds are working and whether to up your dose or switch or what.

 

[karj]

Now that I think about it going off the meds was probably a bad idea. I guess I thought they would not see exactly where the problem was coming from because I bleed nearly everyday and I just wanted them to see for once and for all where the blood was coming from because they always asking me about the colour of it and stuff and mine varies from very dark to bright red. So Im not really giving them any proper indications! Anyway they probably saw the last day so I am being a good girl now and taking all of my meds

 

[LtHuff]

Oh my gosh! I would have died if I was awake for mine i am sure. I was in enough pain afterward from it.

I have one in two weeks, they better put me out again. I feel so sorry for you all that have to go through it that way. Hope they find something worth the pain and suffering.

 

[Linnie]

Oh wow! I was freaking out about mine that I just had last Monday but I was completely sedated, why wouldnt they put you under for something like that?! Thats insane!

I got told to roll onto my side and then boom, I was back in the recovery room, surely you can request to be sedated for it?

Im so sorry you had to go through that!

 

[OccupyCrohns]

I'm not an expert, but I've had three colonoscopies and I think if you're having this kind of experience you may need a new doctor?

The first two I had I didn't even know it happened. The one I had yesterday though.. is another story.

 

[Crohn's 35]

I'm not an expert, but I've had three colonoscopies and I think if you're having this kind of experience you may need a new doctor?

The first two I had I didn't even know it happened. The one I had yesterday though.. is another story.

Hey there , glad you responded here, have you got Crohn's or IBD? We would love to see your story so we can meet and greet you. Lots of help and friends here. Hope to see ya.:smile: