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Surgery verses wait and see...

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Crohn's Disease
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Posted 4/18/2018 2:06 PM (GMT 0)
I am totally happy with the decision for the surgery when it happened... like you said, this could have been so much worse!! I guess thank God my body was telling me things were worse than they ever have been... because it was being honest.

Stomach is on, and I am eating... but I am eating about half the intake that I normally would. I can only do half a PB&J sandwich, for example. Chicken dinners don't even sound appetizing, which is my usual "go to" when I am here. Though they are keeping me on TPN going home, so that will cover my caloric intake for the time being until things heal and my appetite comes back. This is extremely hard for someone like me who is an ultimate foodie!

They put me on some lorazapam along with the oxycodone to help with the pain. I learned I am having muscle spasms coming from my back, radiating up towards the front. The lorazapam seems to be doing justice for that pain, because it was pretty intense as soon as they got rid of the IV drip of ketamine. Obviously hopeful that the pain keeps improving so the pain meds aren't required, but this has been a pretty painful surgery this time around. I don't remember it being this bad last time, but maybe because it was a bit more invasive with the tumor and length.
Posted 4/20/2018 2:38 AM (GMT 0)
Jake,

Have been thinking of you. It sounds as though you stomach is gradually waking up. After surgery I couldn't eat very much at one setting either....it gets easier.

There was some medication..not pain...that they gave me for my cramping that really seemed to help. Gosh...I can't remember the name.....and I can't find it in my records. (I knew I should not have reorganized everything!) It worked best given via iv...but the pills worked if I crushed them...(colostomy messes with the pills coming out whole...lol)

I hope you feel even better tomorrow and every day thereafter...

Clo
Posted 4/23/2018 11:38 PM (GMT 0)
Jake,

Just hoping you're feeling better with each passing day. Sounds like it was the right decision though. Keep looking ahead. A few short months from now, you'll be looking back and thinking about how bad things could have been had you put off the surgery.
Posted 4/24/2018 1:58 AM (GMT 0)
73monte, Thank you for the follow up! Yes, the decision was a great one and my GI docs are happy that it was done in hindsight, as well. They talked about how it makes so much more sense why I wasn't responding to steroids like I had in the past, and relieves them that not all may be lost with the therapy options still available.

Right now, my Crohn's has taken a back seat. They talk about after my cancer plan has been set, then my Crohn's stuff can start being figured out... but all medicines outside of 15 mg of prednisone are off of my treatment at the moment.

Pain is getting better... oosing is subsiding, so everyday is a better one than the day before. Stools are no longer bloody and appearing normal, as well. My wife commented on how I seem to have more energy now than I have for months before my surgery, which tells me how bad things were for such a long time. In the future, I am not going to "tough through it" as I think that may have harmed things more than helped. I think we get used to this disease and how it affects us sometimes, to the point that our being used to things can actually harm us.... interesting thing to think about but the mental health therapist I have been seeing for my stress has really made it priority to have me put my disease as a priority and not something to throw off, or blow off.
Posted 4/26/2018 1:37 AM (GMT 0)
An update: I had my appointment with the oncologist today. He said he thinks this cancer started a couple years ago, as my medicines for Crohn's weren't responding great. This could make a lot of sense on why I was having so many issues, and why my energy level has been tanking. Upsetting it took this long to find, but if people were assuming this was Crohn's... that makes sense.

So, stage 2 small intestine cancer is the official diagnosis. Next step: six months of chemotherapy to make sure there aren't any microscopic cancer cells in my blood stream. Most likely just a pill I will be taking, but he isn't ruling out the potential for dual medicine chemo depending on the situation and the consensus of a group of doctors. For future preventative, they want to do a balloon endoscopy and colonoscopy every six months to a year. I am leaning towards every six months, as I want to make sure we catch any future manifestation early, especially in polyp stage. They say my Crohn's makes this a more complex situation and case, and of course the reasoning they are giving for this cancer (as I have had Crohn's for 20 years... it was bound to happen eventually in their minds).

I guess the part for many of us to think about... Crohn's does increase the risk... and the risk I now know is very real. Unfortunate, but I guess part of our crosses to bear.
Posted 4/27/2018 11:38 PM (GMT 0)
Jake,

Glad to hear that your medical needs are being addressed properly. Hoping the Cancer was caught early, which seems to be the case. How does your GI feel about meds for Crohn's maintenance going forward?

Anyway, keep us posted on your progress. Hope you get to feeling better soon.
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