Is diagnosis/treatment possible without colonoscopy?

[Lizzie]

I've been posting recently about my fear of colonoscopy. I had a CT scan done instead and the results show "a lot of inflammation" (I have no more information than that, other than there was no sign of cancer found). The GI is demanding to do a colonoscopy once more. I told the nurse I feel I can't go through with that, and she is going to talk to the GI. That's where things stand right now.

My question is whether there is an alternative way forward. Has anybody on this forum been in the same situation? Why can't the GI start treatment based on my symptoms, and in terms of treatment does it make a difference whether I have turn out to have UC or Crohn's?

At the moment I am on Prednisolone but this is meant to keep my symptoms under control until a treatment plan is devised.

 

[my little penguin]

The drugs have serious possible side effects and more than a few things can mimic crohns and would get worse with treatment
The doctor needs to know what he is treating.
Can you speak to a psychologist to try and work through the issues you have about a colonoscopy?
Crohns can lead to death if under treated or untreated or other serious complications.
Colonoscopies are just part of dealing with crohns and are necessary
No one wants a colonoscopy so finding a therapist quickly who can help you figure out how to process it is much better than being in the ICU in critical condition or having emergency surgery.

 

[my little penguin]

Can't they give you Ativan /versed or some other anti anxiety med so you don't care what they do during the colonoscopy?
With anxiety the longer you avoid something you are afraid of the larger the fear becomes .
My kiddo has had to put up with a lot of procedures since he was dx at age 7 and is now 11.
Avoiding because he didn't want to have a test just isn't an option( although I wish it was since he is only a child).

 

[Lizzie]

Thanks for the replies.

My question was really about alternatives to colonoscopy rather than how to overcome my fears.

 

[ronroush7]

I am wondering about an enterography?

 

[Kat123]

Hi Lizzie,

What did your colonoscopy 4 years ago show? What is the purpose of this proposed colonoscopy - to diagnose IBD at all? to differentiatally diagnose UC or Crohn's? Or to assess the extent and location of the inflammation?

I think that some of the treatments for UC and Crohn's are the same and some are different. Different drugs work in different parts of the gut, and you would have a different kind of drug depending on the severity of the disease.

If I were you, I would try to get an appointment face-to-face with the consultant to address your questions and concerns to her, rather than IBD nurse being the go-between.

did you get anywhere with the proposal to do the colonoscopy under GA or deep sedation, or do you not want it at all even if you could get better sedation?

Hoping you find a way through this. How are you now? Is pred helping?

x

 

[ncman]

Hi Lizzie, I haven't read through your past posts but from what I've gleaned I'm struggling to understand why your consultant wants to do another scope. (Have you had a colonoscopy before? Was your CT for your small bowel or large? I'm guessing you've not had a diagnosis yet?)

If you've got inflammation in the small bowel, and you know you've got inflammation in your large, barring a bacterial infection or a minority of other causes, in a young person it almost certainly points towards Crohn's. Otherwise, it's Indeterminate Colitis or UC.

I think the largest difference between CD and UC is that Crohn's will respond to sole dietary treatment i.e. you should see a drop in your inflammatory markers with an elemental diet. This can be sustained by following an elimindation diet. The best weapon we have against UC is immunosuppression. So yes, knowing the difference between the two is vital to knowing how to treat it.

There was a study done a year or two back, the METRIC study, showing how you could use ultrasound in place of MRI in imaging the small bowel. Apart from maybe an ultrasound of the large bowel, or a CT colonoscopy, I don't think there are any alternatives to a scope. The Pill Cam could be another route, but if you've got narrowing in the small bowel, then that's probably not a good idea.

If the results from the proposed scope will help manage your condition, dilate strictures, remove polyps, etc., then by all means have it. But if it's just to see where the inflammation is, then I think there are other ways to get that information. And I don't think it's necessary for diagnosis, although it's deemed as the "gold standard" - no one's going to argue against the biopsies!

 

[Lizzie]

Thank you for your reply, Kat123. The colonoscopy showed ulcers in the rectum, ie proctitis, though I distinctly remember hearing there was a problem in the sigmoid too while the procedure was being carried out. I'm not 100 per cent sure but I think they're now trying to distinguish between UC and Crohn's. As my dad had very severe Crohn's I am convinced it must be that.

I've not had any contact with the GI since the decision to do a CT scan in place of the colonoscopy. To be honest I feel very angry and betrayed that the GI got me to undergo the CT scan without warning me that she would still be wanting a colonoscopy afterwards. If I could be guaranteed a painless experience, preferably under GA, I would have the colonoscopy but I've not had any opportunity to request it. Apparently they are offering me better sedation this time but how can I trust someone who promised me sedation that didn't materialise the last time? And who has constantly told me that I only have proctitis when I have been having so many symptoms of disease from higher up for a couple of years?

The pred is helping me a lot. I still have pain and urgent defecation/diarrhoea, but only a few times a day. I'm not sure how long I can stay on it - the nurse today said that I can't stay on it forever (and I guess it stops working after a while?).

It's interesting that there is some overlap in treatment for UC and Crohn's. That implies that the GI could put me on suitable medication straight away without waiting for a colonoscopy, I hope.

 

[ronroush7]

Get advice soon and let us know.

 

[Kat123]

When is your next appointment with your consultant scheduled? can you ask for an earlier appointment? It seems like you have lots of questions regards your treatment quite apart from the colonoscopy and it's totally reasonable for you to have an appointment to discuss all that and the results of the recent CT scan. then hopefully you can get some more information about what they could offer for sedation/anaesthesia for the colonoscopy as well.

glad you are feeling a bit better on the pred.

 

[Lady Organic]

Im inderterminate IBD colitis since my diagnosis in 2001. I exhibit both UC and CD colonoscopy views. You are right that treatments are basically the same for UC and CD of the rectum/sigmoid. However, there is nothing as specific as colonoscopy with biopsy to understand fully and monitor a patient with colonic disease. Depending on severity of disease mostly, dr could want specific treatment. With colonoscopy, the GI can appreciate the severity, expression, exact location (s) and style of disease and also take pictures for future references. I believe this is also important for a long term/fallow up perspective. Disease can also change/expand in locations with time and years, so that is also good to monitor with colonoscopy.
Its possible the nurse can work something with the GI for you so that you can get GA. If this is agreed, you could call at the endoscopy room a few days before your colonoscopy to make sure if this is still arranged for you to happen.
It is true regular sedation does not always work. Its not the fault of the doctor, it just happens sometimes. It happened to me last time, and yes that was really painful

 

[paul11]

Thank you for your reply, Kat123. The colonoscopy showed ulcers in the rectum, ie proctitis, though I distinctly remember hearing there was a problem in the sigmoid too while the procedure was being carried out. I'm not 100 per cent sure but I think they're now trying to distinguish between UC and Crohn's. As my dad had very severe Crohn's I am convinced it must be that.

I've not had any contact with the GI since the decision to do a CT scan in place of the colonoscopy. To be honest I feel very angry and betrayed that the GI got me to undergo the CT scan without warning me that she would still be wanting a colonoscopy afterwards. If I could be guaranteed a painless experience, preferably under GA, I would have the colonoscopy but I've not had any opportunity to request it. Apparently they are offering me better sedation this time but how can I trust someone who promised me sedation that didn't materialise the last time? And who has constantly told me that I only have proctitis when I have been having so many symptoms of disease from higher up for a couple of years?

The pred is helping me a lot. I still have pain and urgent defecation/diarrhoea, but only a few times a day. I'm not sure how long I can stay on it - the nurse today said that I can't stay on it forever (and I guess it stops working after a while?).

It's interesting that there is some overlap in treatment for UC and Crohn's. That implies that the GI could put me on suitable medication straight away without waiting for a colonoscopy, I hope.

Did they use propofol? I was awake for a couple of colonoscopies but then my doctor started using Propofol. That put me to sleep the whole time twice. There's no way you could stay awake with that.

 

[Lizzie]

Thank you for the replies. NCman: my one and only colonoscopy four years ago showed proctitis. The CT scan shows inflammation in the colon and sigmoid and thickening of the bowel wall. Apparently the reason they want a colonoscopy is a) to take biopsies, b) distinguish between Crohns and UC and c) see the small bowel better than it has shown up in the CT scan. I think they scanned the whole of my torso, chest, abdomen and pelvis.

Kat123: I don't have any appointment booked with the GI, communication is all through the IBD nurses. I've told them that I'd only have a colonoscopy if I can have a general anaesthetic and they said they'd pass this request to my GI (but said the hospital does not do colonoscopy under GA). So I am just waiting.

Lady Organic: Thanks for the detailed explanation about the merits of colonoscopy, very information. As above, I have put in a request for GA and live in hope.

Paul11: I'm sure I didn't have Propofol, but don't know what I did have. Whatever it was it was as much use as a chocolate teapot!

 

[-Rita-]

I was also really scared about my colonoscopy and endoscopy but it was all really fast! I was put to sleep and it only took 1 hour. My doctor was there, my parents stayed at the door and I was really well treated by everyone.
This was a necessary procedure for me to do because they couldn't find out what I had and the colonoscopy saved me from further pain and tiresome tests.

 

[Kat123]

Hi Lizzie. Ok. I hope they get back to you soon. Sorry, I know it's very draining to have all this waiting around and uncertainty. At least I find it that way x

 

[paul11]

Thank you for the replies. NCman: my one and only colonoscopy four years ago showed proctitis. The CT scan shows inflammation in the colon and sigmoid and thickening of the bowel wall. Apparently the reason they want a colonoscopy is a) to take biopsies, b) distinguish between Crohns and UC and c) see the small bowel better than it has shown up in the CT scan. I think they scanned the whole of my torso, chest, abdomen and pelvis.

Kat123: I don't have any appointment booked with the GI, communication is all through the IBD nurses. I've told them that I'd only have a colonoscopy if I can have a general anaesthetic and they said they'd pass this request to my GI (but said the hospital does not do colonoscopy under GA). So I am just waiting.

Lady Organic: Thanks for the detailed explanation about the merits of colonoscopy, very information. As above, I have put in a request for GA and live in hope.

Paul11: I'm sure I didn't have Propofol, but don't know what I did have. Whatever it was it was as much use as a chocolate teapot!

they should have propofol available because you don't need a whole anasthegiology(spelling sorry) team to do it and it wears off right when the procedure is over. I know this will put you to sleep for the whole thing because I have a HUGE tolerance to these type of meds. and I was out within about 20 great seconds right before and woke up right after. Just had some bloating this time after and that's all.

 

[Caitlin84]

Unfortunately I think a colonoscopy probably is necessary. I actually had two this summer. The biopsies they get from them are the most helpful for diagnostics.

They put me under with versed and fentanyl. I don't remember a thing.

Maybe your GI was hoping a CT scan would show enough.

I hope you get everything figured out.