It will soon be 4 years since I had surgery. The big question every one asks was it worth it. The answer is YES! Did it take away all of the pain, NO. That said, I have not woke up screaming in agonizing pain since the day of surgery. I had still had pain that made me cry and have felt pretty bad, but that pain is gone. Since my surgery, I have had chronically elevated liver enzymes. I was told that this would go away, it never has, occasionally they will get pretty high. There are times that I feel pretty bad, but I am able to eat some, which is a big deal, before I was tube feeding with no hope of ever eating again. My quality of life is better, I do get bummed when I have to spend my days in bed. I would say that I spend about 4-5 days in bed per month compared to getting dressed about 4-5 per month previously. The amount of pain medicine that I take has drastically decreased. No where on any of the journal articles that are posted does it say that people who have tp/ict receive complete pain control. If these articles are read, they will give a percentage of people who were able, most do NOT receive complete pain control. Most continue to live life with pain, and challenges. We were challenge prior to surgery. No one promised us life would be easy. We have God's promise, that he will always be with us, even to the end of the earth. I am counting on this, I have put everything on his promises. To date, he has never left me or forsaken me. Nor will he ever.
I have notice that there is a several Japanese posting going on the blog. I don't really know what this means and I will find a way to translate. I will assume that what is written here is good until otherwise determined to be something else. Just know that I am still watching and reading posts.
I hope this finds all with pancreatitis well ( as well as you can be with the beast within) just know that you are not alone. There are many fine yahoo groups that deal with the topic of chronic pancreatitis and I high suggest that you join them. I will NEVER forget the day I found one person who knew exactly what I spoke of when I talked about the pain. NEVER forget when I spoke with another woman who was getting the run around just because "women have a lot of abdominal pain that is never diagnosed" I was told this by a very respect physician at the Mayo Clinic in Minnesota, despite the fact that I had a documented known, visually seen annular pancreas from an open gallbladder removal. I was told "poor interpretation by your surgeon". No it was really there, causing a small bowel obstruction for me.
If one person learns that they can trust what they are feeling through these blogs then it will all be worth it. Don't let someone tell you what you feel, just because they have been to school for years, does not give them the ability to know what and how you feel. Be blessed and know that I read all comments. If you have questions ask them, I will get back with you.
2 comments:
I wanted to say congratulations on your anniversary coming up. I stumbled on to your blog tonight and this is the third anniversary of my own tp/ict. Like you pain is still present but god is still carrying me through. I have ended up with the subtotal colectomy and two other surgeries to remove stomach and small intestine tissue ( but not all thank the lord) My last surgery was in May. If was a blessing to read your blog and I wish you the best as your days continue on.
I used to get a lot of spam comments on my blog, there may be a way to block them :)
It's been 8 months since my TP/ICT at UM-Fairview, with Dr. Beilman, Sutherland's partner. I have almost no pain on my right side now, but have increasingly worse pain on my left. I see Beilman again on Thursday and hopefully will get some answers, or at least something better for pain control. It's getting bad.
You mentioned your weight loss. I'm 5.8. I used to be 140 lbs, and being sick I went down to 96 lbs, like you, still eating. I'm sure you understand the exhaustion and pain and trips to the ER. After years, and on a first name basis with everyone at the hospital and being accused of being a drug seeker, and anorexic, and being told, "you haven't had a bowel movement in two weeks because you probably haven't eaten enough!" Can you believe it? And then the hope that comes with TP/ICT.
Eight months after surgery and I'm back to 110 lbs. I've been visiting my family. I've been going out with my friends again. I've picked up my camera.
I have pain, but I have hope. And now the good days? They way outnumber the bad.
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