Advice after colonscopy

[fizzgog]

So in the past couple of weeks I've had some alarming symptoms that I've never had before, pretty much all the bowel cancer ones. The fact that I have a grandmother who died of that disease has been playing on my mind for a while.

I was diagnosed almost 10 years ago with crohns (terminal ileum) through flex sigmoid and barium but haven't had a colonscopy since. they inform me they give them every 10 years due to consensus/data/figures. even when I brought up my grandmother they said it doesnt classify as a STRONG family history.

anyway, I was lucky enough to get an urgent colonscopy because of my concerns. Had it done earlier and man does it hurt when they go around the bends. also I never felt any feeling of sedation whatsoever ....

this is what they reported- 'apthous ulcerations at the caecum. the ileo-caecal valve was inflamed and oedematous which made terminal ilem intubation difficult. however IT intubated for a couple of centimetres only.'

my specialist, who did the prodecure thinks an MRI scan to assess the small bowel would be a good next step to take. I'm concerned theyll find something sinister there and am wanting an urgent referall despite the specialist saying it wasnt going to be urgent. am i worrying to much?

 

[Rosco]

Hi there, as humans we like to have control over our lives from beginning to end, but when we get sick and the problem is inside us we look for an internal bandaid that doesn't exist. The unknown is stressful to most people so on that I would say some concern could be warranted.

Crohns is like your loud uncle that wont go home, eats all your food gets drunk and sleeps on the bathroom floor. There is not much one can do themselves then try and relax I think its crucial for those waiting for test results to keep busy, take up a hobby, take walks. And if needed talk with a professional about the anxiety.

Depending who we are some people just deal with stress better then others its not a right or wrong its whats best for you.

So here is a thought. Make a Tool Box, for your worries to determine if you should be concerned.

1. Can you do anything about the issue right now.
2. Will worrying make it better.
3. Are there any dangerous conditions I need to act on now like going to the ER.

If you said no to three three tools, then worrying wont help.

Another tool is go find a small rock, and a piece of paper.
write down what you are worried about on the paper. Now take the rock and wrap it in the paper. Use some tape to seal it. Now give it to a loved one or friend to hold your worries for you. When your tests or what ever are done ask for the rock back and throw it away. Dont open it just toss it
Doing this helps build a structure to feel safe but not ignoring but dealing in a healthy way with the worry, but you did something about the worry too.

Hope this helps.

Rosco.

 

[scottsma]

None of us can tell you that you're worrying too much.It's all part of having crohns.Your colonoscopy procedure sounds pretty straight forward and it seems you have inflammation in there.If your GI thinks an MRI is not urgent,then try to be positive.For a non urgent appointment you might have to wait 2-4 months,but even if you get an earlier one,it doesn't mean you have cancer,only that there's been a cancelation.Please keep us up to date,we're all here to offer advice when we can and unconditional support when you need it.

 

[Trysha]

I think your lack of adequate sedation for the colonoscopy was quite cruel and your specialist should have been more considerate and increased the sedation.
It is a very worrying time for you and it would be nice for you to know how long it will be before you get the MRI.
Could you not consult your family doctor to see how things could be speeded up...maybe worth a try.
Try not to think of the darker side...chances are that you have only crohns symptoms which is bad enough... And it seems rather active right now.
Have you been given some therapy for the current flare? Hopefully so..
Feel better soon

 

[fizzgog]

I'm kind of panicking now. I got a missed call from the hospital today saying can i call back. they didnt say it was urgent but surely that cant be good! But they found no polyps or anything and how can they have results when I just had it on saturday?

 

[Scipio]

I doubt you have colon cancer. Aphthous lesions of the ileum sounds exactly like the Crohn's disease you have already been diagnosed with. An MRI is the logical next step to assess the extent of inflammation in the small bowel.

If they didn't find any polyps and the doc didn't visibly see any colon tumors, that suggests your risk is quite low. Add that to the Crohn's disease that can easily produce all the symptoms of cancer in spite of there being no cancer, I'd say Crohn's is the most likely thing the hospital wants to follow up on.

 

[Rosco]

I'm kind of panicking now. I got a missed call from the hospital today saying can i call back. they didnt say it was urgent but surely that cant be good! But they found no polyps or anything and how can they have results when I just had it on saturday?

Keep the group posted, try and remember good or bad news there is nothing worry does to resolve it. In fact stress is not a good factor to have for Crohn's. Doctors call for many reasons, insurance questions, maybe a picture was unclear. Maybe called to tell you biops are clear. Reading your posts its really important you get some tools in place to deal with stress and the unknown. Talking about it helps but sometimes understanding that we are powerless at times is a first strep in dealing with the unknown.

I was telling my son about his Crohn's test a feew months ago, he said what if I get cancer, when it they have to operate. I said to him, no worrying, or anything you do or don't will change the future, because we have no way of knowing if we change it to begin with. What will happen will happen. The key is not to worry with what might be, but learning to cope with results we get in positive way. Hope this helps stay strong.:rosette1:

 

[scottsma]

Please let us know how it goes,sending support.

 

[fizzgog]

I doubt you have colon cancer. Aphthous lesions of the ileum sounds exactly like the Crohn's disease you have already been diagnosed with. An MRI is the logical next step to assess the extent of inflammation in the small bowel.

If they didn't find any polyps and the doc didn't visibly see any colon tumors, that suggests your risk is quite low. Add that to the Crohn's disease that can easily produce all the symptoms of cancer in spite of there being no cancer, I'd say Crohn's is the most likely thing the hospital wants to follow up on.

I obviously hope you're right. What's frustrating is I have to wait until morning to call them back. I suppose if it is the big c it could be treatable/early stage. fingers crossed.

 

[dejavucandace]

Is it possible the hospital was calling about scheduling the MRI?

I have a friend that was diagnosed with bowel cancer and immediately after the scope she was kept and given a MRI which confirmed the diagnosis. This is in Canada where things take forever so im pretty sure if it had looked like cancer you would have had further testing right away. I hope you get an answer soon so you can stop worrying.

 

[fizzgog]

Is it possible the hospital was calling about scheduling the MRI?

I have a friend that was diagnosed with bowel cancer and immediately after the scope she was kept and given a MRI which confirmed the diagnosis. This is in Canada where things take forever so im pretty sure if it had looked like cancer you would have had further testing right away. I hope you get an answer soon so you can stop worrying.

immediately after? what, the same day?

The thing is you can have pre cancerous cells or I could have the heridetary bowel cancer thing which doesnt show up as polyps. If it was about the MRI surely theyd just send me a letter with the appointment time.

I forgot that i gave in a stool sample last monday (Calprotectin) it might be that? not sure

 

[dejavucandace]

Yes the same day, they didn't let her leave without the MRI. Hers would have been hereditary as her dad also had it. Without any polyps to test im not really sure how you would know or what they would test. Hers had already done some damage to the colon and was seen during the scope. She had some bowel removed and radiation and was back on her feet in no time! Stress worsens your IBD symptoms and I read that Cancer can thrive on it also. Don't even give it a chance for that power. Positive thoughts only!

 

[fizzgog]

Yes the same day, they didn't let her leave without the MRI. Hers would have been hereditary as her dad also had it. Without any polyps to test im not really sure how you would know or what they would test. Hers had already done some damage to the colon and was seen during the scope. She had some bowel removed and radiation and was back on her feet in no time! Stress worsens your IBD symptoms and I read that Cancer can thrive on it also. Don't even give it a chance for that power. Positive thoughts only!

I honestly was feeling more positive the other day because i had some popcorn and have been getting spasms every since. so i thought ah maybe I have a narrowing and thats why he couldnt get into my small bowel and thats why im having the pain with the popcorn not being properly digested etc but its this phone call...I cant see how it can be anything other than bad news.

 

[scottsma]

I hope it's good news fizzgog.

 

[ronroush7]

I hope it's good news fizzgog.

I agree

 

[cmack]

I hope you feel better soon. Try not to worry.

 

[fizzgog]

Sorry, been all over the place recently and havent replied. It was actually a call to arrange an earlier appointment with my specialist. otherwise i would have had to wait til july until the next one.

saw him last week and he kept telling me he wasnt concerned at all and that i need to relax because it's probably all stress. He says that I'm probably not having a flare up because blood tests were normal, colon and ileum had only a little bit of typical inflammation.

Problem is, I had blood in my stool. It was a few weeks ago when i had diarrheah. fresh blood on toilet paper and i think in the bowl. i say 'i think' because i might have been freaked out and tried to blank it out. a week of checking stools afer that and I didnt see blood but when I knew i was going to be having a colonscopy I stopped checking altogether because I thought..if i see blood again all theyre going to say is..well youre going to be having a colonscopy so we'l find out what the issue is.

So if it wasnt hemorrhoids or flare up then what is it? frustatingly, because he doesnt think its a flare up and thinks its highly unlikely to be cancer he's not going to refer me for an MRI of the small bowel...

So I went to my GP for advice and she said she'd refer me for a second opinion at another hospital. if it's going to take too long I will go for private. Although I guarantee, if that comes back clear I'll probably still worry its something else like stomach cancer.. sigh

(Biopsies and calprotectin stool sample results havent come back yet)

 

[ronroush7]

I hope you get answers soon.

 

[fizzgog]

I haven't posted for a while as I havent had internet access.
So as I said before, I had a colonoscopy, which they said showed ulcerations and mild colitis. IBD nurses said the bleeding may have occured from the ulcerations.

My consultant decided, after seeing that I had a very high calprotectin result of 930 that I should double my azaithioprine dose from 50mg to 100mg but ruled out an MRI. I opted for a second opinion from an actual IBD specialist (my consultant is a gastroenterologist) he said 'we know your crohns is active. 100%. We know that for sure' and that I should have a small bowel mapping MRI and he has also put me on budesonide for 3 months. Going from 3 tablets every day for 4 weeks then 2 for the next month etc Unfortunately it could be up to 3 months until I have my MRI. He also said, looking at my details on the system, that when I was diagnosed in 2010 I had ulcerations then and he explained that it can cause fibrosis?

I doubled my dose of azaithioprine 2 weeks ago and started taking budesonide around the same time but things havent really changed in my symptoms. still constant loose stools (although still only going a normal amount of times a day) still losing weight even when eating normally. I have had a bit of discomfort now and again but nothing major. One of the biggest trigger foods atm seems to be nuts or popcorn....for example, at the beginning of this year I had no problem eating popcorn, now it gives me pain. I suppose its the kernels that are hard to digest. I've also been getting this indegestion thing I guess...not heartburn but nearly every time I eat or drink I get that pre burping sensation.

At the moment I'm worried about my weight, I'm losing it so fast. I know I'm having loose stools and that can cause a bit of weight loss but I'm only going 3 times a day at most. It shouldn't cause it to drop off this much and this fast. I spoke to a doctor and they said my most recent blood test was fine and I'm not anemic, which I know is something they look for when considering something more serious.

I'm not sure what to do at the moment. the weight loss is a worrying thing, but should I get an urgent MRI? I just cant afford it as I'm struggling financially at the moment.

 

[ronroush7]

Not sure about MRI but they should definitely find out why you are having rapid weight loss

 

[fizzgog]

Exactly. I've lost 1 stone in 2 months.

 

[Jabee]

Does the new IBD specialist know you've lost that much weight? I know in the UK it's hard to get certain tests fast (although here in the US if you don't have insurance you don't get tests at all), but could your doctor mark it as more urgent because of the weight loss? Have you had any imaging of your small bowel before? If it's inflamed then your body isn't getting the nutrients it needs. The duodenum absorbs iron, and the ileum vitamin B-12, but most of the actual absorption of proteins, minerals, carbohydrates, sugars, amino acids, etc is done in the jejunum. Were you losing weight when you were first diagnosed? I'd definitely make sure the doctor knows how much you've lost and that you are still losing.

 

[fizzgog]

Well, when i saw the new IBD guy on the 18th april he sent a letter to my gp saying I'd lost 1 stone (i used to be 12 stone, the most I've ever weighed, around January)

recently I weighed myself I was 10 st 13. So its been 3 weeks and I've perhaps lost a tiny bit more. I went to a GP who said she'll get me to come in and see a nurse to have the weight recorded. like a monitored weight diary. Nothings happened about that...

Spoke to an IBD nurse today about it and said if it keeps dropping then an MRI is the step theyll take. But I'm waiting for one anyway so...

To answer your last question Jabee, I can't actually remember if was losing weight when first diagnosed. But I did lose a ton of weight when I had a severe flair up in 2012. I was a 6ft guy that weighed 9 stone. But at that time I was confined to a bed because my stomach was in so much discomfort and pain..I was also going to toilet countless times a day. But currently I'm going a normal amount of times a day and I feel perfectly fine (just ocassional discomfort, like cramps mostly) It makes no sense.

I've been on budesonide for 3 weeks now and an increased dose of azaithiprine for almost a month and a half and I'm still the same: still having loose stools and still losing weight.

 

[ronroush7]

Well, when i saw the new IBD guy on the 18th april he sent a letter to my gp saying I'd lost 1 stone (i used to be 12 stone, the most I've ever weighed, around January)

recently I weighed myself I was 10 st 13. So its been 3 weeks and I've perhaps lost a tiny bit more. I went to a GP who said she'll get me to come in and see a nurse to have the weight recorded. like a monitored weight diary. Nothings happened about that...

Spoke to an IBD nurse today about it and said if it keeps dropping then an MRI is the step theyll take. But I'm waiting for one anyway so...

To answer your last question Jabee, I can't actually remember if was losing weight when first diagnosed. But I did lose a ton of weight when I had a severe flair up in 2012. I was a 6ft guy that weighed 9 stone. But at that time I was confined to a bed because my stomach was in so much discomfort and pain..I was also going to toilet countless times a day. But currently I'm going a normal amount of times a day and I feel perfectly fine (just ocassional discomfort, like cramps mostly) It makes no sense.

I've been on budesonide for 3 weeks now and an increased dose of azaithiprine for almost a month and a half and I'm still the same: still having loose stools and still losing weight.

Maybe you should ask your doctor about a biologic.