Traumatic Colonoscopy done, still undiagnosed :(

[CatherineM]

Well as some of u may no I was to have my colonoscopy. The whole thing was a disaster. I was scared of sedation and had every right to be after my experience. It didn't work!! I was in tears with the stomach pain, the doctor tried giving me more stuff which wasn't great. They were going to stop but I told them to keep going. I'm still so upset by it. To make matters worse the said everything looked normal but took a load of biopsies. I can't believe it looked normal. I have all the symptoms, high stool calprotectin test, does this mean I dnt have IBD. I'm so upset, really feel as though they will never find the problem

 

[KayleighMeek]

I'm so sorry to hear that it was horrible for you and the sedation didn't work well. If hey have taken biopsies they may still find something there. Even if they don't find anything with the colonoscopy keep on at the dr's untill they can find out what is going on. X

 

[ginnyrdhap]

Hi CatherineM:

Sorry to hear about your traumatic experience with the colonoscopy. Sounds terrible!

My recent colonoscopy didn't find signs of Crohn's, Celiac, or colitis even though I have many symptoms and a positive Prometheus blood test result for Crohn's. I was really surprised too. I will be seeing my GI in 2 weeks and think he will order a pill cam test next. Apparently some people don't get diagnosed until they do this test because the ulcerations are higher up in the small intestine then what they can see with the colonoscopy. I know it's so hard to be patient when you want to know what you have and need treatment. Unfortunately, it appears to be very typical for lots of patients to have many tests and wait months for an answer. Some people on this forum are still undiagnosed after years. But you'll know more when you get your biopsy results. Some types of colitis are microscopic and the tissue looks normal to the doctor when he's doing the colonoscopy. Good luck to you. Hang in there and I hope you get your results soon.

 

[CatherineM]

Thank u both. It was terrible, I just no for any future test that I need higher dose of sedation. I just feel as tho iv lost all hope. Iv gave up college because of this, also even day is a struggle. I see the consultant in 2 months to see what's next. The calprotectin stool test was a very positive, also been getting abnormal LFTs, every points to IBD. fingers crossed xx

 

[SarahBear]

Sorry to hear you had such a bad experience!

Like ginnyrdhap said, a pill cam still might show something. Before I was diagnosed, my colonoscopy looked completely normal, then the pill cam showed Crohn's throughout my small intestine. I'd suggest that you ask for this test. You won't need anesthesia for it! Also, the biopsies still might show something. Even if these tests seem normal, there's still a chance that it's hiding in there and you could be diagnosed later. Like I said, I had a pill cam and a blood test done in 2008 that showed Crohn's, but the same tests done this August showed nothing abnormal (even though I was having fairly bad symptoms). It could always decide to show itself later (if you're still having these symptoms, I'd say the same tests, especially the colonoscopy, should be done again).

Just wanted to try to give you a little bit of hope! I hope it all goes well for you!

 

[ginnyrdhap]

Sarahbear,

Thanks for sharing about your diagnosis from the pill cam. I hope they will find the same thing on me. Not that i really want Crohn's, but without that diagnosis, I won't know what I have. I haven't been able to go back to work, so I need a diagnosis for disability and to prove to my family that I'm not crazy.

 

[SarahBear]

Sarahbear,

Thanks for sharing about your diagnosis from the pill cam. I hope they will find the same thing on me. Not that i really want Crohn's, but without that diagnosis, I won't know what I have. I haven't been able to go back to work, so I need a diagnosis for disability and to prove to my family that I'm not crazy.

I understand!! I think a lot of us face that, too. The way I look at it, having a diagnosis, and therefore treatment, is better than everyone thinking you're crazy!

 

[Ihurt]

Oh wow, sorry you has such a horrid experience. What did they give you? Usually they use versed. I was just wondering, are you a red head by any chance? The reason I ask is, my good friend is a red head and she had the same thing happen when she went for her endoscopy. The drugs did not knock her out. Also happened to my MIL and she also has red hair. The doctor told my MIL that he see's this a lot in red heads. They usually require more sedation. It sounds nuts I know, but that is what I have heard.

Catherine, next time ask for versed and propofol. This will knock you out good. When I had to have a scope of my bladder a few years back and they had to take biopsies, they gave me these two drugs and it knocked me out good. So sorry you had to deal with that. I mean did the meds make you sleepy at all???

 

[ginnyrdhap]

I have a dental patient with red hair who says the same thing about anesthetics and pain medications. They often don't work well for her. When she had a wisdom tooth removed, the dentist couldn't get her fully numb!

 

[lisakuney]

I asked for propofol when I had my last colonoscopy. It knocks you all the way out. Good stuff. I just explained to my GI that I had a panic disorder, and wanted to be completely out for the procedure.

My Crohn's was diagnosed with a pill cam as well. I hope it gets better for you soon.

 

[lisakuney]

Oh wow, sorry you has such a horrid experience. What did they give you? Usually they use versed. I was just wondering, are you a red head by any chance? The reason I ask is, my good friend is a red head and she had the same thing happen when she went for her endoscopy. The drugs did not knock her out. Also happened to my MIL and she also has red hair. The doctor told my MIL that he see's this a lot in red heads. They usually require more sedation. It sounds nuts I know, but that is what I have heard.

Catherine, next time ask for versed and propofol. This will knock you out good. When I had to have a scope of my bladder a few years back and they had to take biopsies, they gave me these two drugs and it knocked me out good. So sorry you had to deal with that. I mean did the meds make you sleepy at all???

It's true. My dentist has to use 4 to 5 times the normal amount of numbing stuff, and it wears off super fast.

 

[CatherineM]

It's funny reading these comments because yes I am a red head! I didn't feel any effect from the first lot of stuff. I'm not sure what it was called but one was pain relief and other was sedation, after crying for a while in pain they wanted to stop but I said no. No point going through all that pain to stop half way through it! After te crying the did give me another load of sedation which made me drowsy, just a shame it was too late and at the easy part. Iv just been told that if I get sedation again iv to mention what happened and that I need a very strong dose or probably knocked out.
Feel more gutted that after all that they saw nothing and I need to wait 8 weeks for biopsy results. Will be a year this December since all the tests started. Found out I had a bile reflux which they have focused on untill I done the stool calprotectin which showed very high, so doctor was convinced I have IBD x

 

[Jennifer]

Ya you might want to get knocked out entirely instead. My husband has the same problem with sedation where he can still feel and see everything yet he's had surgeries before where he gets knocked out completely and only one time did he wake up in the middle of a surgery but they saw his heart rate go up and his eyes open, gave him another shot in the IV and he went out again. Pretty horrible stuff but some people just need more than the average person.

Hope the biopsies will have some answers (2 months is a long time to wait for results though, I'd try for sooner if you can). As mentioned though if you're suffering in your small intestine of course your colon wont show signs.

 

[CatherineM]

Thank u all for ur support, don't know what I'd do without this. I probably will be knocked out next time, iv been advised to do that. Trying to keep positive. Didn't want to wait so long for my results but it's when my consultant wants me back at clinic.

Is it normal to have stomach pain the day after colonoscopy, I feel quite sick too xx

 

[Jennifer]

I think I posted in your other thread about it but if you start vomiting a lot and are in too much pain and possibly have a fever then you'll want to go to the ER because perforation of the bowel is possible during a scope.

Otherwise it is common to feel pain for a few days after (mine only lasted 2 days and was minor cramping that might have been a 3 or 4 out of the 0-10 pain scale) and the meds they put in the IV can make you feel nauseous or vomit for up to 3 days after (for some people, I never got nauseous or threw up though).

Keep us posted with how you're doing!

 

[CatherineM]

Thank u for ur replies. Iv taking some pain killers and having an early night, hopefully the pain and hot flushes will calm by the morning. If not il m get straight on the phone to the doctor. I also have bile reflux (diagnosed 2 weeks ago) so I dont know if that's been triggered by the bowel prep. I had lore sedation half way through because I was crying with pain and knew everything that was going on so maybe that has played a bit too. Was a hard day yesterday, silly but i feel a bit traumatized. I was in so much pain and as they struggled to get round a corner there as a second doctor pressing hard on my stomach. Definitely put to sleep next time. I'm hoping it's just the trauma. The pains calmed a bit, about a 5 with pain killers so that's good as it was agony earlier at times x