I have a question I was hoping my CLL friends could help me with. As many of you already know I found out I had CLL when I went to the doctors back in September 2015 complaining of stomach pain. The doctors still haven't found why this was happening to me. Well after many tests and still no results the doctor has scheduled a Gastroscopy and a Colonoscopy exam next week. To see if I have...IBS ..Crohn's....or Colon Cancer..I pray it's just IBS. My question is has anyone had a Gastroscopy done and is there any concern I should have doing this exam since I have CLL and I read that some people get chest infections after the procedure and sometimes pneumonia. Or am I just worried for nothing? I'm already freaking out about doing this exam. I have never been (knocked out) for anything. πŸ˜‘πŸ˜


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  • I have had both done... the colonoscopy was the worse of the two, primiarily because of the prep...

    The sedation is mild like a twilight, in fact I watched my colonoscopy on a large monitor... came face to face with my colon cancer... an interesting experience... it had a very cinema noir aspect to it... a bit like the sewers of Vienna, from the Third Man..

    I never had any problems with infections in either end and I was on Imbruvica (ibrutinib) for the lower portion... with bleeding issues.

    You will be fine...


  • I had gastroscopy with anensthetic spray 2x.I had not infections and any problems Olga

  • Good news. I don't think I will be awake for any of it. 😊

  • Thanks Chris...I appreciate the feedback.

    Best wishes

  • No problems with my colonoscopy and I was under twilight. Don't remember a thing and no problems afterward!

  • Good to hear..I honestly hope I don't remember anything either. πŸ˜†

  • And the next have no aches or pains thanks to whatever they put in your "knockout juice". It was great feeling 20 again!!

  • That's good. I'm not sure what they will give me .

  • BC

    You need to get sorted. Hope all goes well for you.

    Please let usknow how you get on.


  • I will.

  • I've had both and found the endoscopy more unpleasant even though I was 'sedated'. It was some years ago however and my husband has had it done since with just the numbing throat spray. He found the experience fine and went back to work afterwards. It's rare to have problems with this procedure so please don't worry or allow the scare stories to spook you.

    I'll confess I was very afraid of the colonoscopy but apart from the preparation, it was totally straightforward and not remotely painful. I had 'conscious sedation' for it and was completely awake and chatting to them throughout. Couldn't feel a thing to be honest and apart from removing a polyp (which thankfully was benign), the outcome was good. The CLL was not seen to be a major issue for the procedure.

    The odds are good and the thought of it worse than the reality. Hope all goes well BC with no issues identified.

    (I've had to remove identifiable details when I realised the post hasn't been restricted to the community.)


  • Good to hear all went well with you. Alot of the fear is not knowing. But I am getting some good feedback...thank you


  • Hello BC Texas, I had a gastro-endoscopy back in 2012 which was 5 years after my CLL diagnosis. I had no problems and had the procedure without anaesthetic apart from a throat spray. Throat was a little sore afterwards but certainly no infection. Try not to worry, and all the best.


  • Thanks Holly.

  • I had MAC anesthesia when I had mine. No issues at all, knocked out like a light. It is not general anesthesia, but you are asleep. Like those before have said, the worse part of it is the prep.

    Wishing you the best outcome. πŸ‘

  • Thank you.

  • I ve had both a colonoscopy and endoscopy with the prep for the colonoscopy being the worst component.

    I've had endoscopes due to Baretts esophagus, nothing to do with my SLL/CLL, and was out during the 10-15 min procedure (the so called Michael Jackson drug). No issues afterwards.

    I have also had two sets of HALO, or the burning of pre cancerous cells in my esophagus, and that was painful afterwards and required some Percocet afterwards. I have had GERD for many years and am on PPI to prevent reflux.

    My only suggestion is if someone is having a colonoscopy then do an endoscopy at the same time. This way you cover both ends. Talk with your Gastro doctor.

  • Good advise. I am having both done at the same time.

    I hope you are doing well.

    Best Regards

  • It was the blood lab before my colonoscopy / upper endoscopy that revealed my CLL, but the procedure (aside from the annoying colonoscopy prep) was no problem. In my case they discovered a small hiatal hernia, but nothing else. It was pretty uneventful, and I was totally knocked out for all of it. The did both at the same time, and I agree with Awksom , that it is better to do it that way.

  • I will be having both done at the same time. Yeah everyone is saying the prep was the worst...

    Best Regards,

  • I've had both several times, both before and after CLL diagnosis. I hate the prep for colonoscopy, but the procedure itself is not that bad. If you feel discomfort, do try to let them know - they may start the procedure too soon for the anesthetic. Everybody is different.

    I've had stomach ulcers and GERD at the one end, and polyps removed and diverticulosis (which really isn''t that unusual) at the other end.

    Neither exam really sees much of your small intestine, BTW. There are swallowable cameras for that.

    I'd suggest having someone go with you on the appointment in case you don't feel well enough to drive home. The fasting for gastroscopy and the cleanout from endoscopy leaves me light headed.

    You may be able to get copies of a DVD of the procedure if you ask before hand. Some places give it for free, others charge, and some do not have the equipment to make the DVDs handy. This is valuable if you go to a different gastroenterologist associated with a different hospital later. It's morbidly fascinating.

    Best of luck!

  • Thanks for the advice.

    I will be sedated so I hope I don't hear or see anything. πŸ˜†



  • I had an endoscopy in 2014 after being diagnosed with CLL in 2008. I found the anesthesia very pleasant- very relaxing. When I "woke up" I wondered why they hadn't started the procedure yet... No infection. If there is any concern you could probably take 2 days or so of prophylactic antibiotic like they give for dental procedures. Check with your doc.

  • Ok I will look into that.

    I appreciate the reply.

    Best Wishes

  • Colonoscopy - best nap of my life and second best nap when I got home. No issues at all. It's the prep and stress of going in - totally feel you on that!

  • I agree alot of it is probably just in my head.

    Thank you


  • Hi BC... Never fear all will be well. I've had 2 endoscopys 2nd one 1 day after a bone marrow aspiration. worse part is the waiting for your turn in the end i told them that i has cll etc and they rushed me through. My problem was/is a sliding Hiatus Hernia, which i manage.

    Lets hope its something simple


  • Thank you for your kind words. I will be honest with you I am a little nervous..tomorrow I can't any solid foods only soup.. then I have my appointment Thursday morning. I'm having both Endoscopy and Colonoscopy done at the same time. I will make sure to post my results and experience for everyone on this forum.

    Best Wishes


  • sure you are taking a nap, but how'd it go?

  • Just finished. I'm still kinda out of it but all went well. Looks like it's IBS. They sent some samples to the lab so I will have to wait on those results. I gotta tell you the worst part as many have said was the prep.

    All in all it went well with no surprises.



  • Good to hear!! Now relax, take a nap, and have something goid to eat!!

  • πŸ˜†

  • So glad it all went well, BC. Sorry about the IBS but it will be good to have a definite diagnosis so you know what you're dealing with.

    I wasn't going to write about my experience before you'd had yours, because it wouldn't have helped you.

    Because for me, the gastroscopy was OK but the colonoscopy was not! It was OK to start with, but as they went higher up, I was almost screaming and longing for them to stop. Afterwards they told me that my guts were unusually narrow with sharp twists and turns, which made it difficult.

    Most people have no problems with colonoscopies, but I guess as with most things, there are always exceptions.

    I don't have a low pain threshold - I've had three bone marrow biopsies and they were no problem. I've given birth to two big babies without much anaesthesia. But if I have to have a colonoscopy again, I'll ask for sedation, a more narrow endoscope, and for them to be aware of my narrow convoluted guts!


  • Thank you. I made sure they sedated me. I had a little discomfort but it wasn't that bad. If you ever have to do it again i hope it goes better than the last one.

    The hardest thing for me was the prep..I barely made it to the doctors I was so light headed and weak.

    Best wishes... you all are like my second family. πŸ˜†

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