Feel pressured into getting Colonoscopy, Not sure if I want to do it.

[mackraslo]

Good Day,

My name is Mike and I am in the process of being diagnosed. I have had 2 ultrasounds, which in turn lead to a CT scan, and then a referral to a GI specialist. Both Doctors I have seen say that my results "Look like crohns, most likely crohns" but with not very many symptoms and the scans do not show any inflammation.

I have been using LDN and eating a very specific diet, as well as supplementing various herbs and products. I have been doing this for a few years before all this crohns business came about. I believe that my lifestyle and eating habits are the reason why I do not have many symptoms or inflammation.

I saw the specialist yesterday, He briefly spoke with me in a consultation. He wanted me to get a Colonoscopy ASAP and then he said I would need drugs to manage crohns when I get diagnosed.

I am now on the fence about going through with the colonoscopy because I do not want to put my body through the prep and undergo any of the sedatives, narcotics, and other drugs used in the colonoscopy.

I feel like I can manage my issues with my lifestyle for now and I do not feel like a colonoscopy is worthwhile for me at this time.

Can anyone please way in on this? I do not have anyone to talk to about this issue and I do not know how to proceed.

I would greatly appreciate anyones insight and opinions.

Thank you very much.

Mike

 

[Clash]

It's a personal decision but lack of symptoms don't exclude the disease being active and even simmering inflammation that won't necessarily show up on a CT scan can cause irreversible damage.

There is a non invasive stool test, fecal calprotectin, if it is elevated it may give more weight to having the scopes done. And elevated result doesn't mean it's definitely CD but it does mean there is inflammation present that needs further testing.

 

[FrozenGirl]

I agree with Clash. If you do decide to get it done you could opt for minimal sedation if you wish. Or have a flexible sigmoidoscopy which is less invasive and can be done sedation free if you really want with the limitation it will see very little of the colon, depending on where your inflammation is.

 

[hawkeye]

I'd get the scope done. There could be inflammation or disease that other diagnostic procedures cant see. The fecal calprotectin test is also an option to try before or in conjunction with the scope.

 

[lookame]

IBD is a very unpredictable disease. Just because at this moment your symptoms are managed doesn't mean in a month you aren't doubled over and passing large amounts of blood which could have been avoided with a drug like lialda (which is a very mild maintance drug). Like others have said you could have small amounts of imflammation which if left unchecked can cause serious damage such as scar tissue, strictures, narrowing ect.

In my case my disease was left unchecked for at least a year. I received CT scans and each scan showed the disease progress and essentially rip through my colon until I was labeled a severe case and required hospitalization and a blood transfusion. I now am looking at removing my colon because I can't get the disease under control.

As others have said you can ask for a fecal calproctine test which is not invasive, you could also ask for a flex sig which will look at the first 1/3 of your colon. A flex sig however may miss key areas of inflammation and misses the ileum which crohns typically flares up at-crohns also usually shows in patches or as cobblestoning which is why I say a flex sig can miss.

 

[mackraslo]

Thank you all very much!!! I cannot thank you enough for taking the time to respond and give your advice and knowledge.

I feel like I could talk myself into going through with everything, but the thing is, I feel very rushed, I just saw the Doc on Friday for a consultation, then I signed away all these forms for complications and waivers for procedure mistakes, blah blah, and now I have an appointment in a 2 weeks.

This is all well and good, but I would have liked a bit more time to get my affairs in order, which I mean, finding someone to drive me to and from the Hospital(mandatory apparently), I also need to get time off work for a day or two. and I also need to have the funds to buy the prep drugs and such.

I just wish I had more time to get situated before rushing into such a procedure.

I was thinking of calling Monday and asking if I could change my appointment for a few weeks longer away. Just so I can get everything worked out first.

Anyways, I hope this makes sense to someone, Please dont get me wrong, I am VERY grateful for any and all help I am receiving, but I guess I am just nervous and very unprepared.

It wouldnt be the end of the world if I delayed my procedure for a few more weeks so I can get my self situated properly? Ugh, perhaps I am just being a scared little boy.

 

[FrozenGirl]

Would it be the end of the world, probably not. I still wouldn't recommend it though. No matter when you have it its going to be a new experience which is scary. That said if you really can't make it happen logistically ( getting a ride, time off work, etc) then reschedule. Be aware of wait times though, it may be a month after you original appointment depending on the schedule. Good luck!

 

[shamrock15]

It might not be the end of the world, but it could really complicate yours. In my experience with crohn's, it is pretty rare that a doc acts for a scope ASAP. It shows a level of concern to me that should be considered. As lookame says, the strictures and scarring are permanent when they happen and, while I understand and sympathize with the desire to go drug free, it may not be your best option. In my case if I had had remicade a couple years earlier it likely would have save me three operations and a total of about 3 months in hospital stays.

The prep and scope itself are uncomfortable. I have had the scope done without sedation and I am not sure I would voluntarily do it again so make sure you get someone to drive you home.

 

[wellen1981]

Hi,

Ive had a colonoscopy without sedation - you really want sedating.

I had my 2nd about 3 weeks ago and it was me that insisted on having it after i was like you before i'd ever had one.


The procedure is not actually as bad as your imagination wants you to believe and as far as providing info the GIs need, it really is helping them to actually see what is going on where they need to. Plus you get to see on the monitor in realtime and for me after 2 years of suffering terrible pain when i saw ulcers and inflammation i was relieved - cuz up to that point i had no idea if i was even properly ill. To know there was a reason for how unwell i was and how much pain i was in was a relief - now i could finally put a reason on it all. Thats how i felt.

I was totaly against the procedure before my first one but even after having it without sedation I know how vital it was to see the situation inside.

Anything you want to ask to help put your mind at ease just post.

You could postpone it if you needed to so that you can get arrangements in place eg prep meds bought lift to and from sorted out and 2 days off work 1 for the procedure and maybe the 2nd to recover and eat.


I think half of the hesitation is the guy factor... let's face it how many of us would get our prostate checked without hesitation

 

[mackraslo]

Once again, thank you all so very much for being so nice and understanding with me. I am new to this forum, and heck, new to the whole crohns scene haha, but I feel less alone now because of you all.

I think I have convinced myself to go through with the colonoscopy, its just the prep and prep drugs that really are bothering me.

Plus google has not been helpful for me at all.... empoweredsustenance.com/skip-the-colonoscopy/

Anyways, My colonoscopy is on the 30th of this month, I guess I can convince myself by then that everything will be alright and go smoothly. I am just a paranoid and anxious person in general, especially when it comes to Doctors and Drugs.. just bad past experiences.

Anyways, enough whining from me, I appreciate your time and effort very much. I hope you all are having a good day/night and I wish you all the best.

Mike

 

[wellen1981]

Once again, thank you all so very much for being so nice and understanding with me. I am new to this forum, and heck, new to the whole crohns scene haha, but I feel less alone now because of you all.

I think I have convinced myself to go through with the colonoscopy, its just the prep and prep drugs that really are bothering me.

Plus google has not been helpful for me at all.... empoweredsustenance.com/skip-the-colonoscopy/

Anyways, My colonoscopy is on the 30th of this month, I guess I can convince myself by then that everything will be alright and go smoothly. I am just a paranoid and anxious person in general, especially when it comes to Doctors and Drugs.. just bad past experiences.

Anyways, enough whining from me, I appreciate your time and effort very much. I hope you all are having a good day/night and I wish you all the best.

Mike

Good for you.
You will be fine and if they give you a light sedation it is easier during the procedure so that you are relaxed.

Yeah my approach to googling things is to have the wikipedia mentality - ie if it cant be verified what ive found through google, i will move on to search results that can be proven as the more tin-foil hat stuff you read the more you can get sucked into the counter-productive side of google research - ie scare the feck out of you and its all unfounded paranoia.

I'm all for being cautious and doing research, but it helps to weed out the rubbish online.

Welcome to the forum

 

[jamilea]

I manage my condition on my own, but I don't really recommend it. I seem to be highly sensitive to any kind of medication or substance and I eat organic, non GMO, free range stuff.

However, I can tell you that I still have episodes about three times per year. And when I say episodes, I mean the awful squeezing and turning of my intestines that make me feel like I'm gonna pass out because it hurts so badly. Sure, the pain is not as extreme as before when I ate the things I didn't know I couldn't eat, etc . . . but nonetheless, I still have a condition and it seems to have a mind of its own.

I commend you for educating yourself and thinking before you make decisions.

I can also tell you that no narcotics are necessary for a colonoscopy. You can even be awake for it if you want. There are no other drugs used in a colonoscopy. I didn't have any drugs aside from the anesthesia. Furthermore, there is an easy way to do the prep.

Two tablets of ducolex, a half a bottle of Miralax into gatorade and voila. You will have to get the instructions as I don't have them on hand, but my husband just had one done last year and it was easy peasy for him to do. When I had mine done years ago, my prep was horrible because I was in the middle of a flare and I wasn't aware of the fact that there is an easier way to prep.

Best wishes to you in whatever you decide. I know this isn't easy, but you can get through this.

 

[2thFairy]

Two tablets of ducolex, a half a bottle of Miralax into gatorade and voila. You will have to get the instructions as I don't have them on hand, but my husband just had one done last year and it was easy peasy for him to do. When I had mine done years ago, my prep was horrible because I was in the middle of a flare and I wasn't aware of the fact that there is an easier way to prep.

This is a very good prep (my preferred prep), but follow whatever prep instructions your doctor has prescribed for you. There are several different bowel preps and each doctor has their preferred method for one reason or another.

 

[UnXmas]

Don't worry too much about the prep and colonoscopy. The prep is nasty, but it's one day, and if I've understood you right, your concerns are much more about the long term effects. The colonoscopy and prep won't have any lasting effects unless you are very, very unfortunate - there is the tiny possibility of something going wrong, but the possibilty that the scope wil provide information that will help you and your doctors improve your health long term is far more likely. If you have full sedation, once the prep is done you don't need to worry about the scope at all, they'll sedate you then the next thing you know it's over and done with.

I'm sorry you feel you're being rushed into it. In the UK where I am everyone complains about the length of waiting times - for a routine collonoscopy, you may well wait a few months here, so you've certainly put a new perspective on things! I do understand though, it is scary going through an invasive procedure for the first time. But you will be fine, and when it's done you will have much more knowledge about your state of health and can plan how to procede from here.

I feel like I can manage my issues with my lifestyle for now and I do not feel like a colonoscopy is worthwhile for me at this time.

If you could manage your health with just lifestyle, you wouldn't be in the situation you're in now.

 

[wild_one353]

It will be easier to obtain drugs with a proper diagnosis, so that is one benefit of doing the colonoscopy. Even if you were controlling most symptoms without drugs for now, perhaps just knowing this option is available to you in the future would be a good thing.

 

[Honey]

Hi there, I agree with all the advice given. Go for the Colonoscopy as scheduled and do not worry. Take the Prempak as instructed the day before, to clear the bowel. It is only a strong laxative. Add a cordial like Lime juice to it, to make it more palatable. Go for sedation too as it will be easy. Bring someone with you to drive you home. Examination only takes minutes and you are spaced out. Time to sleep afterwards before going home. Good luck, do not worry.

 

[mackraslo]

Good Day all,

After re-reading my take-home info sheet, I have a few more questions.

In my meeting, I specifically asked my Doctor about interactions with the Antidepressant I currently take and if I need to wean off of it before prep and the colonoscopy. He immediately said no I do not.

That being said,

The prep I am supposed to use is called Pico Salax. The official website states that it may have an interaction with the type of Antidepressant I am on. Also, I have read that on certain types of Antidepressants, you must wean off them before you undergo anesthetic procedures.

I am hoping he just has a lot of experience when he immediately told me "No".

Anyways, this might be a long shot, but is there anyone from Canada who has used Pico-Salax?

Ill try and get in touch with a pharmacist to figure things out in a more clear manner for me.

Sorry to sound so stubborn, Honestly I am just feeling scared because I do not want to get worse by way of side effects or "complications". As Ive said before, I have had a bad experience with Doctors and prescribed medications a handful of times.

I am still wanting to go through with this all, I guess I just need to vent and get more support if its available. Thank you for being so understanding and considerate with me.

Kind regards,

 

[shamrock15]

I think pico salax is one of the more common ones here. I have used it many times. Tastes like a bad version of sprite with a lot more gas in my experience. I have had some times when it will have me running frequently, some times not so much. It really isn't anything to worry about. Better than giving yourself an enema in any case. Couldn't tell you much about interactions though. You did ask your doc and that was the right thing to do. The pharmacist is probably a good step as well. Somehow it seems more comforting to have them visibly check though. I recently needed antibiotics following a kidney stone and they clearly took the time to check it out. Fingers crossed for good results for you.

 

[FrozenGirl]

I think your pharmacist Is your best best. I haven't heard of any interactions or need to stop antidepressants but you pharmacist will know for sure. If you doc said it was fine it may be a very minor interaction, something they need to know about to be safe for sedation but nothing too concerning.

 

[mackraslo]

Thanks again everyone, I feel so much better now about everything after all your supportive comments. You all rock!

 

[wellen1981]

Thanks again everyone, I feel so much better now about everything after all your supportive comments. You all rock!

Also get into the habit of not just accepting a flat answer from medical professionals, but actually push them to elaborate on why they are giving a yes/no closed answer.

This is the best approach to looking after yourself that you can do from your side while seeking help from medical professionals.

Leave the blind trust to those more reckless mate

Let the professionals not only advise you what to do but also press them to justify the reasoning behind their decisions - it's your life and none of them are perfect, human error is human after all.

If you had pressed for reasoning at the time it would have saved you the worry and the hassle of having to now check with a pharmacist/chemist to get clarification.


Don't learn the hard way if you can help it as many people keep repeating that mistake and as one of 'those people' I learnt the hard way and it ruined my life.

As per Bill Hicks: 'Think for yourself, question authority' haha.


Sorry for this serious reply but I just wouldnt like anyone to have to suffer more than they already are.

 

[Buttercupj]

Wish you luck Mike whatever happens and you decide.

I'm in a similar position waiting for diagnoses, no serious symptoms. I was hospitalised with suspected appendicitis, but all they found was inflamed cecum. I had fever and sickness with the pain. I under went a colonoscopy on Friday, it wasn't successful due to pain (should be painless). I'm due another attempt on Wednesday, needless to say I'm not looking forward to it. I feel it important to go ahead though as I want to know what / why this happened to me. Just 3 weeks since my op and I feel like my world has been turned upside down, just confused and scared.

Sorry for rambling, just that I can relate you to concerns. I wish you well.

In some ways I think I'm at the denial stage, 3 Dr's now have all said they suspect crohns. There must be something in their logic. It worries me why they are rushing me around so quick, but I'm not complaining, rather get it over with.

 

[2thFairy]

I under went a colonoscopy on Friday, it wasn't successful due to pain (should be painless).

Were you awake? The only way a colonoscopy "should be painless" is with using drugs for conscious sedation or being completely knocked out with anesthetics. I have woken up in the middle of two colonoscopies and was in pain, but they gave me more drugs quickly and continued the procedure.

I'm so sorry you had such pain!

 

[Buttercupj]

2ndFairy, I was sedated and given iv pain killers. They think there maybe a loop in the bowel making it harder to navigate so next one will be done with help of scope guide (whatever that is!). If that doesn't help I will have to have general anesthetic.

 

[brooklyn23]

I would say do it. I had never had a typical crohn's symptom in my life when I was diagnosed, and it was done through scopes.

Even if you feel like you can manage it with herbs and diet now, that may not be the case in the future, and it might become worse without taking the appropriate steps to truly determine the status of the illness. In the long run, would you rather take precautionary steps now, or risk worse symptoms down the road because you didn't get the full picture when you could?

Additionally I take antidepressants (SNRIs), and did not have any issues when doing prep for a colonoscopy or even going under general anesthesia when I had a laparoscopy. I just had to time when I took them or anticipate a few brain zaps.

 

[UnXmas]

I've had the same experiences as brooklyn with antidepressants. As far as I know they warn about using them along with the sedatives used in many procedures, as antidepressants often have sedating properties of their own, but in practice it doesn't seem to matter very often. I've had many surgeries while taking sedating antidepressants.