This last hospital visit had me begging for a colostomy. The pain was overwhelming, debilitating, and let me not leave out excruciating. I don't think I've ever experienced the pain scale at 10. When they hit me with the morphine I could literally feel the drug hit the pain receptors in my stomach and intestines and put the fire out. I embarrassed myself in front of the hospital staff and I am sure the patients in the hallway. I not only screamed, I cried, hysterically.
I have had Crohn's in my mouth, stomach, duodenum and large intestine. This was a first in my descending colon and rectum and for the love of God, hopefully the last. I had no idea people could survive in that much pain. Generally, people with my condition will have a temporary colostomy allowing the rectum to rest and heal. In my case, it would have had to be permanent because I have no healthy tissue left. That was hard to wrap my mind around. In any case, Crohn's has a nasty habit of appearing someplace else even if you remove it. So, I opted out, considering it as a last resort, and agreed to another run with Remicade. On Tuesday, I will be seated next to my sister-in-law while she is having an infusion of chemo and I am having Remicade, a different form of chemotherapy that targets the immune system and kills it. I've been on Remicade before, but had to go off when I was struck with an unrelenting staff infection that would not give up. It took me a year to recover from the infections and while I am nervous about going on Remicade again, staying the way I am now shoots quality of life to zero. Really, there is no decision here. It has to be done. The daily fevers and pain are wearing me out. I was also given a liquid diet high in protein to at least attempt to start the healing process. It is a no sugar, vanilla flavored, Ensure-like liquid that will deliver the nutrients I need three times a day or as much as tolerated. I've lost a lot of weight and hopefully this will put me back on track. At least I hope so. If not, I'll be sure to let you know. Thank you for stopping by!
Bettysue
1/9/2018 07:47:02 pm
Take the little lap blanket I made for you. If you have your MIL’s, Karen can snuggle under that one. Hats are in the mail. Three of them. Wish I was there. Not that I could do anything but make bad jokes and make you wonder if all my marbles are under this mass of purple hair. Smiles and ❤️ you!
Louann
1/10/2018 04:05:49 pm
I am on the couch content with my blankie. The hospital set it up so Karen can get her chemo the same time I am getting infused. They are so awesome.
Shelly
1/9/2018 08:36:59 pm
Hang in there girl!
Louann
1/10/2018 04:06:17 pm
My god I miss chocolate.😲
Kathy
1/10/2018 09:47:46 am
Are they adding anything to the Remicade? Like another drug?
Louann
1/10/2018 04:09:44 pm
Delzicol ANF the husband went to pick up another drug but the co-pay was 500.00. I told him to forget it but then realized the Remicade will kill my deductible anyway.
Emily Thompson
1/10/2018 02:49:10 pm
If you're really underweight, like a BMI of less than 18, I would consider asking about a feeding tube. I met someone with stomach problems and a PEG-J tube and she's on this formula, and she has fabulous hair and nails and skin!
Louann
1/10/2018 04:04:03 pm
Hi Emily! This has been a trial for sure. I am so OK with an NG tube at this point just so I don't have to stress. The liquid food is nasty and since I have Prednisone induced diabetes now, carbs are out. I get to start Remicade next week and I am hoping it kicks in ASAP though my doc says it can take up to 6 weeks. Thank you for your suggestions. It is always nice to know you are not alone. (((Hugs)))
Sylvie
1/12/2018 03:12:24 pm
I really hope the remicade helps you loads this time. Sending you love and hugs from Sunny Reading UK xxxx
Louann
1/12/2018 05:35:07 pm
Thanks Sylvie! Only 4 more days. Today was rough, am praying tomorrow will be better. Comments are closed.
|
Sign up today for freebies and fun. Grab your chance at signed copies of my paperbacks and free e-books.
For Kobo coupons click here or copy and paste the link into your browser.
http://www.therawfeed.com/stores/kobobooks-com |