HealingWell
Search Close Search
☰

thoughts on holding off for a colonoscopy? (Update)

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 10/12/2013 6:00 PM (GMT 0)

More confusion. I just got back blood test results from my gp. According to them (GGT, ESR, Amylase Serum) there is no indication of inflammation in my blood and according to my dr if the Crohns was active it would show something. He told me my sedrate levels are low. So, I am thinking this is a good thing and yet now where do I stand with the colonoscopy? He told me he saw no rush to get it done. Yet, he is aware what I am going through rectally with the ache/fullness feeling and the back and forth scraping pain with BMs. I told him this has calmed a lot over the past couple of weeks (the ache/fullness feeling...which originally acted up back in August) but it's still there and the scraping is an off and on thing as it has been for a long time now. He said I could always cancel and reschedule in 4 weeks time if the symptoms don't go away entirely or just do a sigmoidoscopy at that time.

So, now this leaves me with dealing with my gastro. He told me just the other day that a colonoscopy is preferable to a sig because he wants to check out the terminal ileum since this (and the rectum) where were Crohns was originally active 4 1/2 yrs ago (more so in the terminal ileum). A very mild case he said but still, I guess they like to follow up at some point. But again, if there are no signs of inflammation there (he himself examined me a few weeks ago and said he felt no sign of inflammation) then what is the wise move right now?

If I felt this was necessary then, of course, I would suck it up and do it (despite my fears) but I am not sure right now if I even should.

Posted 10/12/2013 6:50 PM (GMT 0)
GGT seems to be a liver function test. Okay, maybe I'm missing something but you're being tested for bowel problems, not liver problems. You're not even on any Crohn's meds where the liver has to be monitored, as far as I know.

ESR is a blood test for generalised inflammation; CRP is usually measured as well. Unfortunately normal ESR/CRP values doesn't necessarily mean you are okay, as not everyone's blood markers rise during a flare-up.

And Amylase is used to evaluate pancreatis.

If you want a non-invasive test, go back and ask your doctors for a faecal calprotectin test. It will involve giving a stool sample, but at least you won't need anything stuck up your bum. Faecal calprotectin is a far more accurate test for intestinal inflammation than any of the tests you mentioned - unless I'm missing something.
Posted 10/12/2013 7:46 PM (GMT 0)

You're right. It was ESR and CRP. I am confused about the GGT and Amylase. The gi dr prescribed them and the primary dr agreed with getting it done.

I will ask about the test you mentioned. It's frustrating when drs tell you one thing and then you get the advice of someone who mentions tests that sound more palatable. You wonder why the drs aren't even mentioning them as possibilities.

Anyhow, I appreciate the feedback. I wonder why the primary sounded certain that if there was a Crohns flare the bloodtests would give some indication of this. I really don't know what to think anymore.

Posted 10/12/2013 9:14 PM (GMT 0)
Patients tend to first choose those tests that are easiest on them. Doctors tend to first choose those tests that are likely to provide the most extensive and reliable information w/in "cost" realms.

Primary doctors are not as experienced w/IBD and its manifestations and indications and even detection tests as gastroenterologists.

I take what my doctors (primary and specialists) tell me, what I learn from those patients who are experiencing this DD and similar symptoms and what I read about this DD from reliable health sources and then make my own decisions based on what makes the most sense to me.

Given the discomfort of sigmoidoscopy vs the discomfort of colonoscopy and the amount of information each can provide .... I wouldn't even consider a sigmoidoscopy given the symptoms you are reporting.

I don't know of any gastro or other colonoscopy professional who could reschedule or even schedule other than an emergency scope w/in 4 weeks. Try a minimum of 3 months in our area and we have a lot of gastros plus some colorectal surgeons as well as internists that regularly do colonosocpies.

Posted 10/13/2013 3:59 PM (GMT 0)
Thanks for the input, CrohnieToo. I would really like to discuss this further with my gastro. Though I am sure he wouldn't suddenly change his mind about having it done. He did mention a few years back when I had dealt with this last (rectally) that he could do a sigmoidoscopy (this was only a year after the colonoscopy though) and would sedate me for it if I felt I couldn't deal with the pain. I think now though he is going on the amount of time that has passed since the colonoscopy. A year ago he said he wanted me to get it done even when I wasn't having symptoms. He didn't even sound all that concerned about the rectal issues. He said it was the terminal ileum that concerned him more because that was where more inflammation was originally found whereas the rectum was showing very mild inflammation. The thing is now I have not been having any pain in the ab (where I originally did), he said there were no signs of inflammation from doing an exam and then the blood test results as well don't show sings of inflammation so I guess from where I stand I wonder what the rush is and why I have to go through this if my issues are concentrated in the rectum. Should I assume I could still be having an issue despite lack of pain (referring to the terminal ileum)?
Yes, I don't think the primary is thinking in terms of "just reschedule in a month.". Even if it can be done my issue is saying to them at the last minute I don't want it done right now see you in a few weeks because I don't know if they (or he) would have a problem with this. Considering I actually had a dr who cut me off from his practice when I had cancelled (once!) years back this is always in the back of my mind.
Posted 10/13/2013 7:56 PM (GMT 0)
My blood tests have been normal even when I was quite sick. The one reason I came so close to dying years ago from an infection was that my white count and all looked normal when I had a raging infection. I would go to the ER and be sent back home because nothing was showing up in the blood work. It finally cranked up when I was in full-blown sepsis. I don't know if it's a separate issue from the Crohn's for my body to not respond, but it at least used to be that way. And that was before I was on any immune system suppressants.

Sometimes you just have to listen to your body. If you feel something is out of whack when you're experienced with the how the disease works on you, it probably would be a good idea to go ahead with the colonoscopy. But that's just my opinion, which isn't worth the old plug nickel. ;-)
Posted 10/13/2013 10:57 PM (GMT 0)

Thanks for the response, JaSanne. What is the point in bloodtests if they can't accurately tell you what is going on in your body?? I had a CBC, CMP, GGT, Amylase, ESR, CRP. Everything was normal and yet I am wondering if it means anything. Why would the gi dr even prescribe these tests if they mean so little? It's all very confusing. In an ideal world I would be able to talk to my gi dr and discuss all of this and see what he says but just spoke to him last week and somehow I doubt he will call back again. I think he feels it's been X amount of years and he wants to look again. I don't even think he is going by symptoms. I say this because when I discussed the rectal issues he seemed more concerned about the terminal ileum, which, again, I have had no pain in for years now. I just want to do the "right" thing at this time and not sure what that is anymore.

Posted 10/14/2013 1:04 AM (GMT 0)
Hi Pink, I have to undergo a colonoscopy every 2 years even if I'm not flaring up to check how things are going on there. When was your last colonoscopy? In 2011, I had a scope and 6 months after I had another one as I kept complaining of my proctitis, then.
Yes, I have always got negative ESR/CRP results when I was in such severe pain and inflammation. Even the calprotectin results were not that high.
As far as tests are concerned, the H.pylori test results (blood and stool) came out negative for years though I had symptoms of this germ in my stomach. Then, I underwent an upper endoscopy and my GI found that the mucosa got changed. He took a biopsy and voila I had colonies of H.pylori in my stomach. I held both results and asked my GI which to believe and he said the biopsy result, of course. So, test results are not always that accurate.
IMO, if you hadn't had a scope in years why don't you have another one? If you don't feel at ease w scopes, ask your GI for an enterocolonography CT; it's not an invasive procedure. I, myself, hate it and whenever my GI asks me to have it, I ask for a colonoscopy instead.
Good luck :)
Posted 10/14/2013 1:44 AM (GMT 0)

Minnie, my last colonoscopy was 4 1/2 yrs ago when I was first diagnosed. When this was done he said he would want to do it again in 2 yrs or if things were going well then 3. I admit that if I wasn't dealing with anything right now rectally I would put it off even longer. I guess I don't understand the point unless you are having symptoms and other than rectally I'm not. And since the rectal issues are much better now than they were weeks ago (hey, I've been sitting for hours and not crying nor am I reaching for a donut pillow!) then I feel just give it time. Yet, I know he is set on getting this done and I just want to make sure it's the right time in that he said its best to do this when I am suffering. So, if I am doing better should I wait? I know some people get this done often but I am trying to avoid it unless I have to do it. I guess biopsy results would show what is going on even if symptoms aren't bad?

The test you mentioned, is this one of those things where you drink something ahead of time? Trying to find info on it and coming up short.

Anyhow, thanks for the input!

Posted 10/14/2013 1:52 AM (GMT 0)
Do you mean the enterocolonography CT? Yes, it has preparation the same as that of a colonoscopy. The thing I hate about is that they insist I drink castour oil, mannithol a day before the procedure and stay on a liquid diet for 2 days. On the day of the procedure, they let me drink a lot of water, and inject iv me w a contrast and give me an enema containing the contrast as well. My poor stomach can't tolerate all this. I'm not making you freak out. For some people, the idea of a scope makes them panic. I prefer a scope to a CT as I get sedated and don't feel anything. Another issue regarding the timing of the scope, my GI told me before that he will always wait for a flare up to subside and then perform the scope as scopes can't be performed during inflammation.
Posted 10/14/2013 1:54 PM (GMT 0)
Once we've been Dx'd w/Crohn's disease most gastros will prefer a colonoscopy at least every 5 years IF the patient is in remission. Once you've had CD for 10 years it is recommended that we have a scope annually (yeah, once a year *sigh*).

When the CD is active it is not at all unusual for your gastro to want to take a look-see to see what the two of you are dealing with.

CD can be actively perking away w/inflammation w/o causing any symptoms. Unfortunately. Its not at all unreasonable for your gastro to want to do a colonoscopy given the time factor. On the other hand it is not all unreasonable for you to beg off whilst there are still some rectal symptoms. Why not try talking to him one more time, stress the rectal issue and that its improving and scheduling a colonoscopy 3 months from now? It won't make any difference in your treatment and hopefully you rectal area is in remission. If not, then you should go thru w/the scope scheduled 3 months in advance.
Posted 10/14/2013 6:26 PM (GMT 0)
Minnie, yikes, the CT doesn't sound any better than the scope. Part of my issue is the scope itself, yes, but also the prep. Hmm, I never heard of not getting it done during a flare as my gi dr said that was the best time (at least in terms of the rectal issues I have been complaining about).

CrohnieToo, thanks, I contacted my gi dr today and left a message. She said she would give it to him. I want to discuss this further with him but not sure I will get a call back or not as I just talked to him last week. I think he feels I just want to get out of it out of nervousness (which is partly the case but there is more to it than that) and he already told me I should do it. End of story. We'll see. I hope he calls back. I feel at least he should acknowledge the blood test results that I know the office just received because they said it was in. I guess in an ideal world he would tell me it's ok to hold off for now, give it a little more time and see how I am doing and if I am still suffering then they would get me in. Its frustrating because when I say it's overall better I still have an ache but it's not as bad as it was. I am going by sitting really. A few weeks ago I couldn't sit as the day wore on and now I can. The pain with BMs is fine for days and then starts up again in a different spot. I don't get this. And I don't know what I would be dealing with come prep day and, yes, it scares me. Yet, he wants to see it when it's like this. It's a catch 22.

Anyhow, will post what happens later.

Posted 10/15/2013 12:21 AM (GMT 0)
My GI wants to do a scope every 2 years regardless of how I'm feeling. He said part of it is to check for colon cancer, which Crohnnies are at a higher risk for. I'm not thrilled about it, but it doesn't seem out of the ordinary.

Also, the scope is still the best way to know what you are dealing with, and treatment options would be best.

Did you not like the prep you did last time? There are options for the prep, so maybe trying a different one will help. There's lots of tips and opinions on the forum for ensuring a smoother prep.

i know it sucks to do the prep, but I think since it's been so long, and you are having trouble it makes sense to me to go ahead with it.

Good luck!!
Posted 10/15/2013 1:53 AM (GMT 0)
thanks sparkleplenty. Yeah, it sounds like every 2 yrs for most people. I have only dealt with 2 preps and one colonoscopy. The first prep was pure hell for me as it was phosphosoda and I know many people think it was great but I had become dehydrated no matter how much I drank and felt horrible. Wound up not even going for the scope as I wound up at an emergency clinic instead because of what I was going through. Second time was my first scope and it was Miralax and this was much better but I still had a hard time after midnight being up all night. How do you get the pooing to stop before bed?! And I think a big thing for me right now is fear of having pain with going to the bathroom as this has been happening a lot with me and, yes, it really does scare me.
Anyhow, it seems he wants me to do this regardless of my blood test results and was really hoping I could avoid it longer.
Posted 10/15/2013 2:57 PM (GMT 0)
The way I look at the prep, it doesn't matter if I'm up all night in the bathroom because I'm going to be under anesthesia for the scope and will sleep the rest of the day. Get yourself the first scope appt for the day and you will be a happy napper.
✚ New Topic ✚ Reply