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Crohn's Disease Forum » Support Forum » Colonoscopy, mixed messages.


12-22-2010, 03:24 PM   #1
StarGirrrrl
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Colonoscopy, mixed messages.

Hi everyone, am knackered so if I miss something out, sorry!

Started prep yesterday and decided nothing can taste viler than Klean Prep, took the first 2 litres in 4 hours (don't know how I got it all down, even with squash and drinking through a straw!) As I was running mainly empty I got up at 6:40 and took half of the last litre. Didn't sleep well, going to the loo until 2am when i finally dropped off! I learned that watery D is not the same as passing water as D!!

Finally stopped needing the loo about 11am which was great, had a bath at midday and then left for the Hospital. A rather fetching gown and a pair of modesty knickers later (had none on last time, but these were rather granny-esque), I was ready.

I found out, walking into the room, that the Dr performing the procedure was the locum I had seen in clinic, so he knew all about me which was good. He said the MRI follow through was not easy to arrange at my Hospital so it would need to be the Barium follow through instead (no laxatives!!!!!!!). He stated he would arrange this after the biopsies came back, which is what he said in clinic.

I decided at the very last minute, while they were trying in vain to find one haha, that I would give it a try with just pain relief and no sedation. Having had a flexible sig the procedure was not unknown to me and I had not found that too traumatic, this for me outweighed the unknown effects of sedation and being groggy after etc. They team were very impressed and I had gas and air (Entonox) as pain relief.

The procedure went smoothly, apart from a rather awkward corner, and I was asked to move from my left onto my back, several times. At one point I had a bad spasm (puff puff puff lol), and a moment later I heard the Dr say to the Nurse "did you see that spasm", not as a statement but in amazement and some shock. Obviously that wasn't expected! I did ask after about 10 minutes how much longer because I had had enough, and my nurse told him I was in pain. It was only a few minutes more and then he took the biopsies.

I was then told he wouldn't wait to order the barium follow through and that was done while I was there, so he changed his mind for some reason. Before the spasm he did say it didn't look likely it was Crohn's. He stated when finished it was not collitis for certain and didn't mention Crohn's again, but I do think the change of heart over the test was telling. Apparently my bowel does look very healthy.

After an hour and fifteen minutes I was heading home!

According to the report at the end, I had 50% gas and air and he got as far as the Terminal Illeum which was one further than the Caecum which he was aiming for. No signs of inflammation upto TI. 2 biopsies each were taken from these areas: Rectum, Sigmoid Colon, Descending Colon, Transverse Colon, Caecum, and 4 were taken from the Terminal Illeum, so 14 in total. To rule out Microscopic Collitis apparently. Is the amount normal?
"Histroy and abd and feature suggest IBS but had increase of WBC scan in RIF" (which is the scan which led me back to Gastro) was also stated.

So next step is to look in the other places including small bowel and stomach. I have been wondering about my stomach recently. I don't get acid reflux often, but it has been present over the years and had some nasty spells of it latelty which with the bland diet am at a loss to explain, and do get bad tummy aches at times. If it's the case then they can give me a pill cam if they can't diagnose, I refuse totally to have a gastroscopy!

If this other test is normal then I won't yet accept a diagnosis of IBS. My symptoms don't fit and no cause has been found for shoulder pain after 2 MRI scans of upper arm and joint came back normal. And the CRP always in the 20's every time it was tested last 4 years. I will ask for another WBC scan and if that comes back normal, will decide next step, if not I will tell him to start over!

Biopsies should be back in a couple weeks, likely the same for BFT appointment to come through.
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
12-22-2010, 03:58 PM   #2
Jennifer
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Why are you refusing to do a test that may help you finally get a diagnosis? There is no prep for an endoscopy (gastroscopy) and can easily be done under sedation (I don't see why you wouldn't want to be sedated). Its much easier and faster than a colonoscopy. I think you should get it done because if you are concerned that it might be Crohn's, then you should have those done anyway. I had my last one done about a month ago. Easy peasy. I think its important to cooperate with the doctors by doing the tests they suggest if you want a proper diagnosis. If the inflammation isn't in or near the colon or ileum, an endoscopy is a good idea to find out where its coming from along with a barium swallow.

Glad your scope looked good.
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
12-22-2010, 04:15 PM   #3
StarGirrrrl
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The idea of having a tube down my throat freaks me out totally, even with being asleep. As mentioned any form of sedation is unknown to me, and with my other problems and family history it's not an option at this time I want to take if I can avoid it. In an emergency, yes of course. As there is an alternative in this instance I would rather try that first, and then think again on my viewpoint if it didn't work.

I am always happy to work with Doctors and benefit from their knowledge and experience, but at the end of the day as the patient I make the decisions as to what I do and don't want to do. Blindly taking a Consultant's word is what got me into this whole mess so i am much more pro-active now. I'm not tarring them all with the same brush or anything, but it has made me more aware to question things and to the fact I don't have to do everything they say, if there are viable alternatives I like better.

Last edited by StarGirrrrl; 12-22-2010 at 04:20 PM.
12-22-2010, 05:00 PM   #4
Jennifer
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I don't believe there is an alternative for an endoscopy as pill cams cannot take biopsies.

If you do in fact have Crohn's then having colonoscopies and endoscopies come with the package. An endoscopy is not an unnecessary procedure for people with or trying to be diagnosed with Crohn's Disease.

I understand that its more of a phobia for you rather than avoiding unnecessary procedures. Just keep in mind that it may help with a diagnosis so you won't have to be in limbo anymore. And yes sedation will make you groggy after wards yet hopefully you might be able to find someone to pick you up and take you home. I'm not aware of your full story involving your dislike for sedation.

I understand that its your body and that its your choice and that not all doctors know everything but sometimes the patient can be the one who's in the wrong as well (that's more of a response to your signature really but is still relevant now). I just hope that you make the right decision. If its not needed, then great but what if it is? I can't imagine there being an emergency endoscopy done, more like emergency surgery. I really do hope that you get the answers you need and soon.
12-22-2010, 06:53 PM   #5
StarGirrrrl
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Thanks for your input Obviously if it was needed I would have to do it and with sedation but would rather try other things first. I know a Pill cam can't take biopsies but it can take pictures. For me it would be ideal to try that first, even if I did have to then go on to the gastroscopy. I'd hope that if that spot did need looking at, say if something pops up on the barium follow through, they would consider it for me. I know nothing beats a biopsy but if it came to that then i'd have had blood crp raised for 4 years, the WBC scan and whatever may show on the barium to add evidence for whatever problem was suspected. So it wouldn't be a fishing expedition rather a confirmation, and i'd hope visual would be enough. Who knows, I sure don't.

And yes I realize patients can be wrong sometimes too. I certainly was wrong to accept the IBS diagnosis several years ago when there was evidence saying otherwise! I just feel sometimes people put too much faith into Doctors and it can have terrible consequences, and I agree just as you say sometimes patients make the wrong choices, but so do Doctors. At the end of the day they are experts but everyone makes mistakes, and if I wasn't fully happy with the reasoning behind a medical order I wouldn't do it. I don't blindly follow orders anymore is all i'm trying to say. That got me into the state I am in today. I put my blind faith into experts and it screwed me over once already. I like to fully discuss options and the reasoning behind them to make sure I am happy with it as well as the Doctor.

For example if I had been told to have another flexible sig I would have refused, because I had one that came back normal already 3 years ago, and felt it pointless to have another. So I was happy (ha well you know what I mean) to have the colonoscopy because that was the best option at this point. As going in the other way with a pill cam first would be for me personally.
12-22-2010, 08:20 PM   #6
Jennifer
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I've never had a pill cam before and heard that there can be complications with it getting stuck say if there's a narrow area somewhere. What about doing the barium swallow and then the pill cam? Or is that the plan already?
12-23-2010, 08:02 AM   #7
StarGirrrrl
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The barium swallow is next, after that is still open so will see what is found/what they say. Also will be a few weeks before the biopsy results are back, that may find something.
12-23-2010, 02:22 PM   #8
Jennifer
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Good good. In all honesty I really wish that nothing is wrong with you but I doubt it and I hope you get your answers soon.
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