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Crohn's Disease Forum » Support Forum » Just had my ass kicked....


12-08-2013, 11:06 AM   #1
Riley
 
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Just had my ass kicked....

Probably not the best title of a thread but that's honestly how I feel right now.

I thought after 20 years of Crohn's and 2 surgeries I was pretty tough...but 3.5 weeks ago I had my 3rd surgery and it just kicked my ass. I have small bowel disease and had yet another stricture hence the surgery. My surgeon said he would try to do a key hole surgery first and only do a large incision if it didn't work...but then the night before he said key hole would not be possible. I'm really upset at this because if he had said that before i would have gone to another surgeon for a 2nd opinion. I feel like he just wanted to get it over with then take the time and try.

The day after the surgery I was fine...eating, walking, watching t.v....then the following day they said I needed a blood transfusion. This was followed by a bout of paralytic ileum, nasegastro tube and central line. It was hell and day by day I kept getting worse instead of better as is usual after surgery.

I feel so defeated, both physically and mentally. I'm still having pain and on Friday I went for an ultrasound. They said there is some type of sac next to the bowel that they want to puncture with a needle and drain...they don't know what it is but said it's nothing to be worried about but maybe what's causing me pain.

On top of it all my Mom passed away 6 weeks ago and I miss her so much and it's so hard to be sick without her support.

So here I am, looking for support from this community. Anyone have any words of encouragement? Is it normal to still be in pain almost a month later?
12-08-2013, 11:30 AM   #2
afidz
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I am very sorry to hear what you are going through. Are you still in the hospital?
I am concerned that the sac that they found is an infection. My brother had an appendectomy that got infected and he had several small sacs in his abdomen containing infectious fluid. Are you white blood counts elevated at all?
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12-08-2013, 11:35 AM   #3
Riley
 
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I just had blood work done again on Friday so I'm not sure. Prior to that I had signs of infection in my blood but I also had a UTI. I don't think it's an abscess and I assume they don't either. I don't have a fever and the pain isn't extreme. They think it might be blood....should I have this procedure done? I'm a little anxious with everything that's happened
12-08-2013, 12:41 PM   #4
afidz
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I can't tell you whether or not to have the procedure done. But consider this, there is a foreign object in your body. Your body is probably going to try to get rid of it on its own, and that might make things worse. If it is infection, and the sac ruptures on its own, you risk septicemia, which can be fatal. Talk to your doctor about all of your options,what it could possibly be and the risks of not getting it/getting it. find out what your blood work showed on Friday. Is your abdomen hot? Red? does it hurt to put pressure on it?
12-08-2013, 12:46 PM   #5
SarahBear
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Hi, Riley! I'm very sorry to hear what you've been going through, especially with the loss of your mom.

Unfortunately, we can't really advise you on what to do at this point. I suggest talking it over thoroughly with the doctors involved. Be certain to express any concerns you have. Hopefully doing so will give you more information to base your decision off of.

I hope things get better for you soon!
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12-09-2013, 06:22 AM   #6
UnXmas
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The day after the surgery I was fine...eating, walking, watching t.v....then the following day they said I needed a blood transfusion. This was followed by a bout of paralytic ileum, nasegastro tube and central line. It was hell and day by day I kept getting worse instead of better as is usual after surgery.
Hi, I wanted to let you know that I just had a very similar experience. Had surgery, felt well enough for a couple of days, then, paralysed digestive tract, ng tube to drain bile from my stomach, TPN feeding because I couldn't eat, etc. I was definitely getting worse, not better.

The pain eventually began to ease and I was able to eat a little after about three weeks. But by that time I was incredibly weak from not getting out of bed for so long and losing too much weight. I couldn't even stand up for more than a few minutes without getting exhausted.

I'm six weeks into recovery, and still recovering, though the pain's pretty much gone now. The paralysis resolves on its own. My doctors reckoned it could take about three months to get over.
12-09-2013, 09:09 AM   #7
hingrum
 
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I had my third surgery this year too! I wish it would have been a key hole surgery. My doctor informed me he is not here to make me look good in a bathing suit, but to help me the most efficient way possible. This left me with a somewhat crooked, wide scar through my belly button about six inches vertical.
I was in pain a month later, but not to the degree it was hard for me to function. I was released from the hospital a week after the operation. After another week I went back to work. (I have a desk job, so it isn't strenuous) I would be concerned with all the complications you are having for sure.
However, everyone's bodies responds differently to trauma. Age and other health factors play a key role. I am sorry for your loss. I know it is hard to go through something like this surgery without support of someone who has always been there for you. I hope they get you straight soon!
12-09-2013, 11:09 PM   #8
Mike58
 
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Riley,
Hang in there. Surgical pain can take a long time to resolve itself. I had 20 inches of small intestine removed on August 27 this year and I still suffer daily from the pain. Multiple tests have been done with no reason for the pain other than post surgical pain. Hopefully yours won't take 4 months to feel better. My GI doc said I basically have Crohns in reverse as my DX date was in October 2012 and been in the hospital numerous times until the surgery. On Remicade, Imuran, Wechol, diabetic, and hypertension. 30 pills per day plus insulin daily thanks to the Prednisone. Enough of me. You hang in there.
12-10-2013, 12:10 AM   #9
Rocking on
 
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I am going to primal scream for you since i know how much it would hurt you. Seriously, my neighbors are like WTF. But that one was for you man!
12-10-2013, 04:02 PM   #10
mccindy
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Riley, I'm so sorry to hear you lost your mother. I'm sure with all the surgical posts, that's what everyone's focused on, since it's the easier part to talk about. I can't imagine how difficult it is for you to go through this without the support and love of your mother. As someone who is close with her two sons, I know how hard it must be for you. Sending you a virtual hug <> with lots of love, from one mother of sons to another mother's son.
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Craniotomy with tumor resection performed July 2013. 99% of WHO grade II diffuse astrocytoma removed, MRI scheduled every 6 months to monitor for regrowth.)
12-11-2013, 06:20 AM   #11
Riley
 
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Thank you all so much for your messages of support! This forum is such an amazing place. I guess I expected my post op to be like the other times and it's been so much harder....but I am definitely getting better, the pain is a lot less now. I'm still exhausted but I guess I just need more time.
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