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Crohn's Disease Forum » Tests for IBD » So they want to operate? Scared girly!


05-14-2013, 05:36 AM   #1
ashleigh
 
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So they want to operate? Scared girly!

Okay, I'm FREAKING OUT BIG TIME!!!

As some of you may know my story, short version is I'm currently in the process of being diagnosed and crohns has been bought up several times .. I had the colonoscopy which showed inflammation in the terminal ileum.
Basically, on Sunday (today is tues) I got admitted to hospital because the lain was so bad ! I had a ultrasound done and blood tests done and the doctors said everything was 'fine', except when I went for my ultrasound the doctor said I had inflammation but they didn't know where, I think my CRP was 2.0..
I have now been told they want to do a laproscapy to have a look at everything.. Just wondered if anyone else has has this done to look into crohns? I have gone from 11st 5lb to 10st 7lb In a week and feel totally exhausted!

Any insight would be great!

Thanks x
05-14-2013, 10:35 AM   #2
nogutsnoglory
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They want to have an exploratory surgery? I think if you can avoid the knife it would be best. What about doing an MRE? They are very effective at showing what's going on. I think unless they know you need resection I would hesitate letting them cut me open.
05-14-2013, 11:29 AM   #3
Jim (POPS)
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Please don't freak out, there is no need to do so. Remember, they are trying to FIX you.

I have had three resections in the pasted two years. If I wouldn't have had them I would be in a bad place right now. I am doing pretty good because of the resetions.

Having the surgery is a walk in the park, healing is the worst part, but you can handle it if needed. Keep your head up, you will get better with time. "I KNOW" is hard to understand this right now, but you will get better. Sometimes its a short road and sometimes its a long one.

If you would like to ask me any questions about my surgerys please PM me and I would be glad to help. Or you can PM me for my phone # and I would be happy to talk to you about this. The main thing is to calm down. You will be just fine.

I hope and pray that you find comfort and piece of mind soon.

Jim (POPS)
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05-14-2013, 03:47 PM   #4
amrycrohns
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I am also terrified of surgery even the simpliest thing. laproscapy surgery is rather small incision or incisions, if they see something are they gonna attempt to fix it on the spot or wake you up and ask you what you want to do? There are a lot of questions I would ask before I agreed to it. The main issue is even if it is a stricture and it's inflammation it can be treated with medicine and no surgery needed. Do they have you on Steriods to stop inflammation? Why are they not looking at CT scans or other tests, is your situation so bad that they have no time to wait? If it isn't life or death and they are doing emergency surgery you need to ask ALOT of questions.
05-14-2013, 03:49 PM   #5
nogutsnoglory
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I agree you need to speak up and ask questions. Even a laprascopic surgery can be dangerous. It mostly is fine but all surgeries and hospital visits come with risks. I would definitely get a 2nd and maybe 3rd opinion.
05-14-2013, 04:02 PM   #6
Grumbletum
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I agree with the others who've come up with a good list of questions to ask. On the other hand though, there are others on the forum, as well as me, have only found the true extent of the disease while undergoing surgery. I had a colonoscopy and MRI before surgery, and when they went in to treat the fistula that they found in the tests, they also found that I had severe inflammation in my terminal ileum as well.
But, yes I'm curious as to why they don't want to do a CT scan or MRI.
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05-15-2013, 02:46 AM   #7
ashleigh
 
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Hi guys,
Well I came in with acute pain on Sunday as well as the usual pain and they removed my appendix through keyhole and put the pain down to that .. So again, the hospital have taken it and said that I won't be in pain now, what a load of crap considering I've been in pain way before this happened? Any one else had there pain fobbed off on their appendix?
05-15-2013, 10:24 AM   #8
nogutsnoglory
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That's the problem with non IBD specialists. I was minutes away from having an appendectomy until a Crohn's surgeon was called in last minute and said the appendix was inflamed from Crohn's not appendicitis. It would have been an unnecessary surgery. I now have had it removed as part of a broader surgery but the fact is the team needs to be trained in IBD and second and third opinions are critical before going under the knife.
05-15-2013, 11:49 AM   #9
ashleigh
 
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They didn't seem to care, the tip of the appendix was inflamed which could be put down to crohns I believe? And they wanted to send me home today, I don't think so. I have demanded to see an IBD specialist .. Who is meant to come see me tomorrow .. The pain is still there and now with the pain of this stupid surgery ! Not impressed in the least, I even had to ring the gastro team myself
05-15-2013, 01:56 PM   #10
Grant
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Hi ashleigh, surgery apart from the inherent risks will leave you with adhesions, not great. I agree with what others have said surgery needs to be a last resort. I hope you see a Gastroenterologist soon to get some answers. Also Ultra Sound is a good way of seeing whats going on , a good Ultra Sound Dr is worth his/her weight in gold.
Finally blood results sadly aren't the be all & end all of indicators that some Dr's would have you believe. I've flared badly in the past & my bloods have been normal.
Best Wishes
Grant
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05-15-2013, 02:21 PM   #11
amrycrohns
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Hi guys,
Well I came in with acute pain on Sunday as well as the usual pain and they removed my appendix through keyhole and put the pain down to that .. So again, the hospital have taken it and said that I won't be in pain now, what a load of crap considering I've been in pain way before this happened? Any one else had there pain fobbed off on their appendix?
April 26th 2012 I was having a bad flare went to Primary, got sent for CT. All of a sudden I am being rushed to the ER the ER doctor said surgeon will be right down to talk with you, you will have you appendix removed with in a few hours. My appendix was 11CM I guess it's suppose to be around 6CM. So now I am worried I call the wife, work and everyone else that needed to know. Surgeon comes down I let him know medicine and he asked why do you take Humira I said Crohn's. He said hmmmm let me go look at your scan myself then. Apparently crohns can cause appendix inflammation and I didn't have a fecal alif which is the blockage that cause's Appendititis. I spent 2 days there so he could get my flare under control, but if it wasn't for a well informed general surgeon I would of had a needless surgery.
05-15-2013, 03:19 PM   #12
ashleigh
 
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Needless surgery indeed I'm in a lot of pain and this extra pain on top is horrible, haven't eaten in 3 and half days .. Hopefully the gastro will understand me a bit better
05-15-2013, 04:18 PM   #13
alex_chris
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Needless surgery indeed I'm in a lot of pain and this extra pain on top is horrible, haven't eaten in 3 and half days .. Hopefully the gastro will understand me a bit better
I hope you'll be better soon. As to not eating, after a while it's not o bad any more. I only had tea and water for 11-12 days when I had surgery, 6 days before and about 6 days after surgery and then only very light stuff for quite some time thereafter. Day 3 is the hardest... Probably especially when you already had surgery.
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05-16-2013, 05:43 AM   #14
ashleigh
 
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Well today is day two and its extremely bad, woken up with sickness and diarrhoea. And I'm in pain from the surgery as well as usual tummy pain, they are looking to transfer me to a different ward now thank god! Maybe some answers x
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