I am writing to vent. My father could walk before the surgery, now he is completely bedridden. He must be repositioned every two hours. He could eat before the surgery now he is fed via PEG. Also he has a colostomy bag. More than half of is mind is gone after the surgery. He mumbles, I don't understand 90%. The remaining 10% is cursing, expressing hallucinations and delusions. He still recognizes me but for some reason he is very angry with me. I guess I am the only one he can express his frustration. He is in a Nursing Home. This is the third one and finally, I have found a place that takes really good care of him. But he is a prisoner in a room. He is unable to socialize, mentally just not capable. Also since his discharge from the hospital about three months ago, he has been having infections. We have been testing his CRP. Now he has MRSA and another hospital infection in his lungs according to a sputum culture. He is being treated by the doctor of the NH and it is going well. CRP going down nicely. Vitals very good. When I look ahead I see years and years of suffering for my poor father and it really breaks my heart.
It was a botched surgery.
It's far easier to change a colostomy bag than to change a diaper. It's less messy too. There are Youtube videos showing the process.
I guess a bag is no big deal for those who have IBD, like me, because:
When I have colon flareups, I
am bleeding like I have a heavy period every day for more than a year; only, the blood is coming out my butt.
am having brown liquid diarrhea coming out of my butt for six months to over a year.
am going to the bathroom 30-40 times a day because I can't hold anything in.
am having to do mesalamine and steroid enemas every day as instructed by my GI's.
...
And I guess cleaning a bag is also no big deal because:
When I have colon flareups, I
am getting the toilet covered with blood and brown liquid diarrhea because that's just the way it comes out.
am not always making it to the toilet, which is only 10 feet away from my bed, so sometimes the brown liquid and blood will just run down my legs to the floor before I even get to the bathroom.
There are many Youtube videos showing what it's like to have a bag.
Yes, low blood pressure is to be expected because the colon is responsible for absorbing water and electrolytes (among other things). If the colon isn't functioning, then it won't be absorbing water and electrolytes, and blood pressure will fall.
Yes, antibiotics can cause diarrhea. The feces should also be more watery before entering the colon. So if there's no colon, then the feces will tend to be more watery.
My dad in NH. My mom lives in her home with a caregiver. This arrangement is very expensive for me. I am very stressed about money also!!!
Anyway...
I must say that colostomy bags are the least problematic issue at the moment. In my opinion they are better than changing diapers and it is much cleaner and the genital area does not get irritated.
My father's CRP fell to 13 from 76. The doctor from the NH says he will continue to improve as they have found the right antibiotics. Still I am very sorry for dad. So sorry that my heart aches.
My mom has Alzheimer's. She is like a 3 year old. But, she can walk, eat... She goes out to take a walk with her caregiver. I don't feel so sorry for her.
About the "botched" operation of my father. I didn't pursue any complaints because.
-first of all I am really tired, I don't have the energy
-it is extremely hard to prove medical wrongdoing (if the doctors did not amputate the wrong arm, like something very obvious)
-all doctors protect each other
-my father is old and everybody can use that as an excuse
So here I am telling the story to you dear caregivers, trying to relax a bit. (In stead of making a formal complaint.)
I send my best wishes to all of you
Laurellel, thanks for asking. Inflammatory bowel disease is a complicated disease with many causes, so there are many things that might help. Yes, I take a lot of supplements and have tried butyrate. I find that supplements (even probiotics, digestive enzymes, and anti-inflammatories) all help a little bit, some more than others, but they haven't helped that much. For me, diet, fecal transplantation (FMT), and Flagyl have had the best results, most likely because I probably have ulcerative colitis from having been on antibiotics for many years. Doctors used to give them out like candy.
I do find it interesting that while antibiotics gave me this disease, Flagyl put one of my flares into remission. What has hurt me has also helped me.
Subduedjoy: It sounds like you are really on top of your disease -- I am so sad you have it all, of course. IBD and UC are cruel diseases and incredibly, er, not fun! I really admire your attitude and strength -- inspirational!
My brother has UC and one of my closest friends since high school has suffered from IBD these many years. I was re-ordering the butyrate for Dad this morning and saw those reviews from IBD patients and thought of you, so felt compelled to share. I give it to Dad to help eradicate H. Pylori, and when I saw those reviews, I realized it might have something to with why Dad's "sudden pooping episodes" (diarrhea down the legs, into the shoes, all over the floor, etc.) had significantly decreased after starting the butyrate. So I went into to PubMed and saw the research behind it. He's had this problem ever since being on antibiotics so long for the infection in his foot. I tried everything, including prebiotics/probiotics, etc., with no success, but maybe the butyrate has helped, and if so, I'm most grateful! I hoped it might help you, too, and sorry it did not, but glad you have found some things that do.
The radiologist shouted at her, “Do you want to live?!” when she declined the radiology treatments. This is the ‘racket’ that’s called medical care here.
I’m pretty well through with these ‘Doctor Gods’. When you’ve worked in the belly of the beast you know the tricks.
I’m very sorry for the condition your dad was left in. The entire medical system gets worse every day or doesn’t try to improve anything. Quite a few elders in my family have literally been done in by ‘treatments’.