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Crohn's Disease Forum » General IBD Discussion » Surgery Again!!I need advice please!


09-13-2014, 07:42 PM   #1
Dixiedoll23
 
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Surgery Again!!I need advice please!

After a recent scope, the doc came to talk to me with a very worried look on his face.I've only seen this guy a couple of times, but he told me "If we don't find something that works for you soon, you're going to have a very short life." Way to scare the crap out of someone doc.
Since I was still so out of it from the procedure, can someone explain this to me in English, please? My report says this:
(Lumen)
Evidence of a previous end to to side right hemi-colectomy was seen in the descending colon.A stenosis was noted in the terminal ileum.The scope could not traverse the lesion and the exam could not be completed.Severe edema, inflammation, and exudate, occupying most of the lumen.Unable to intubate terminal ileum.

If someone could explain this to me that'd be awesome.I know I must have a pretty bad stricture/blockage.I've already been admitted a couple of weeks ago with what they said was just a flare, but I was puking up everything and told the doc it felt like a blockage because I've had one before.
Now I'm waiting on biopsys to come back (should be Monday) from my understanding to see if crohns is active?Seems like a no-brainer to me?
He also said if I start throwing up again to go to UNC hospital this time.Like we'll just wait until it's an emergency.Shouldn't we schedule surgery now and not wait? It's already an emergency already since I'm so blocked and have already been admitted once.Please share your thoughts with me.I feel like I don't know what's going on.

I also have a bad feeling they'll be taking a lot more than 13 inches this time. I'm really scared and nervous.I have 6 boys at home and no idea how I'm going to get someone to help me out.It took me almost 3 months to recouperate from this last time. I was just telling someone I'd rather go through 6 natural childbirths all at once than to ever go through that again.

Thank you in advance!
xo
Jamie
__________________
Dx with Crohns disease in 2010.Have been dealing with symptoms since 1999.
I was the 1 percent chance of the camera pill getting stuck, so off to emergency bowel resection surgery in July of 2010/removed 13 inches.

Currently dealing with another obstruction.Don't know what the plan is yet.Surgery or? I don't know of any other options....
My Meds;
Prednisone 20mg
Vitamin D (50,000 units)
Tramadol 50 mg
Butran patch 15 mcg
Imuran
Gabapentin
09-13-2014, 09:54 PM   #2
tzvia
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I'm sorry your doc didn't have something more positive to say to you. I'm sure he's just concerned, but he didn't choose very good words to let you know that. And in sorry he didn't explain the results better. I'm no Dr, but what it sounds like to me is that they could see evidence of your prior surgery and that you have a severe stricture in your ileum that is so narrow that the scope could not pass through it...I actually have the same thing. But you should call your doc and make sure either way.

If your stricture is so bad that meds don't work, then surgery is usually the next step. Better to talk to a surgeon and plan it rather than wait until it's an emergency. But certainly go back to the ER if your symptoms worsen.
__________________
Diagnosed with Crohn's in 2007, symptoms since 2000.
Hospitalized with bowel obstruction 8/2012
Ileocecectomy with 9" removed 10/2014


Current meds: Entocort, Questran
Past meds: Prednisone, Humira

09-14-2014, 02:22 AM   #3
alex_chris
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After a recent scope, the doc came to talk to me with a very worried look on his face.I've only seen this guy a couple of times, but he told me "If we don't find something that works for you soon, you're going to have a very short life." Way to scare the crap out of someone doc.
This is not just a stupid thing to say, it is also wrong. Crohn's disease is a chronic disease that, if treated, has not been shown to lower one's life expectancy. There are even doctors suggesting it prolongs the average life expectancy because Crohn's patients live healthier (no smoking, not much hard liquor, they care about what they eat and regularly go to the doctor).

Evidence of a previous end to to side right hemi-colectomy was seen in the descending colon.A stenosis was noted in the terminal ileum.The scope could not traverse the lesion and the exam could not be completed.Severe edema, inflammation, and exudate, occupying most of the lumen.Unable to intubate terminal ileum.
Well, the hemi-colectomy is what was done in your previous surgery (removing part of the upper large colon and attaching the end of the smaller intestine to the remaining colon. Tbe terminal ileum is the last part of the smaller intestine. The doc could not go further because of the stenosis. He then noted that you have quite some signs of inflammation meaning your Crohn's is active.

Now I'm waiting on biopsys to come back (should be Monday) from my understanding to see if crohns is active?Seems like a no-brainer to me?
He also said if I start throwing up again to go to UNC hospital this time.Like we'll just wait until it's an emergency.Shouldn't we schedule surgery now and not wait? It's already an emergency already since I'm so blocked and have already been admitted once.Please share your thoughts with me.I feel like I don't know what's going on.
Just a few points. The stricture is in the lower small intestine, but the doc could not see whether it was just one or what was beyond it. Usually, an MRI would be completed to assess what is going on in your smaller intestine (or back in the old days a scintigraphy (similar to an MRI but using x-rays)). To your question about scheduling a surgery right away, no that is not usually done unless the MRI shows the stricture is so severe a blockage could happen any time. Before I had surgery in 2003 to remove several strictures, the surgeon actually suggested to just get the inflammation under control and not operate and then go from there - it was my GI who said the surgical option is better for my quality of living. My GI back then was probably right, but at the time it was not a certainty.

My suggestion would be to first see what Humira does for you if the stenosis they have found did not warrant surgery right away (looks like it from your GI's reaction). If you get inflammation down, a stenosis by itself does not warrant surgery - you can live with it, unless you get big problems from it all the time.

I also have a bad feeling they'll be taking a lot more than 13 inches this time. I'm really scared and nervous.I have 6 boys at home and no idea how I'm going to get someone to help me out.It took me almost 3 months to recouperate from this last time. I was just telling someone I'd rather go through 6 natural childbirths all at once than to ever go through that again.
My surgery meant that they had 24 inches removed and also had to do a stricturplasty to not have to remove even more smaller intestine. I am still fine now.

With 6 kids at home this must be a lot. I am very sorry you have that many troubles. I can only say that if surgery isn't what your doc said is required right away that it makes sense to wait and see if Remicade helps you.
__________________
-----
Crohn's diagnosed in 1999
On Aza from 2003 to 2008 and from 2010 again until Today
60cm of smaller intestine removed in 2003
Vitamin therapy with D3, B6, B12, magnesium, zinc, folic acid for years
Iron therapy with Tardyferron 80mgx2 and Loesferron 80mg for years
Yoga, running, freeletics on the sport side!

Last edited by alex_chris; 09-14-2014 at 07:03 AM.
09-14-2014, 06:31 AM   #4
shamrock15
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I am not sure that remicade will do everything you need with regards to the current narrowing, but I have my fingers crossed for you. I too have had multiple surgeries (6), and all of them before remicade. Since remicade, I have been doing well. If your disease is a stricturing form, remicade (I also take imuran) could keep recurrances from happening. I think the long term outlook for you is potentially very good.

In terms of how much you can lose in your bowel, I think I am probably in the 3.5 - 4 feet range with another 10 strictureplasties done as well. Most of this done without MRI (but most also done over 10 years ago) and they detected many of the strictures during the surgery using a balloon catheter. Since these have happened, I have gotten married, had a child (only one!) gone back to school and changed careers. You'll get through!
09-14-2014, 08:07 AM   #5
Dixiedoll23
 
Join Date: May 2011
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Thank you so much every one!
I need to update my info on here but I have already failed humira and remicade
I was only on remind for a year before I built up antibodies
My last hope is cimzia now.it took me so long to get diagnosed they went straight to the big dogs.
Some docs are real idiots
When I was in the er last year I had one doc put his hand on my hubby shoulder and said with crohns.its just a matter of time..
Really?
Thanks again for the info.what exactly is a stenosis
And sorry for all the typos I'm on my cell
09-14-2014, 08:13 AM   #6
Dixiedoll23
 
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Right now I'm just on prednisone and I think that's why I'm not in the hospital now
doc wants me to start imuran and I will be looking into medical marijuana since I don't have many options left
09-14-2014, 11:59 AM   #7
alex_chris
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Thank you so much every one!
I need to update my info on here but I have already failed humira and remicade
I was only on remind for a year before I built up antibodies
My last hope is cimzia now.it took me so long to get diagnosed they went straight to the big dogs.
Some docs are real idiots
When I was in the er last year I had one doc put his hand on my hubby shoulder and said with crohns.its just a matter of time..
Really?
Thanks again for the info.what exactly is a stenosis
And sorry for all the typos I'm on my cell
Hi there again, stenosis is just another word for stricture/narrowing in the smaller intestine.

I am sorry to hear you have failed humira and remicade. Starting with azathioprine (imuran) or 6mp makes a lot of sense, but I would do that in combination with a biologic drug considering you have a severe case of Crohn's.

On the biologics front, Cimzia is not "your last hope" by far, there are several more biologic drugs on the market. There is Natalizumab (brand name is Tysabri), Vedolizumab (Entyvio) and Golimumab (Simponi) - although I think Simponi currently only has been approved for UC not Crohn's, but if Tysabir and Entyvio and Cimzia would not work, then hell, why not go for SImponi thereafter...

There is also methotrexate which is not a biologic drug nor an aza/6mp autoimmune drug, but is used for moderate to severe Crohn's and can help.
09-14-2014, 03:31 PM   #8
darster
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Sorry you are going through such a difficult time. I hope that doc takes a long walk off a short pier. Very unprofessional imo.
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