Hi everyone. I wanted to give a quick reminder on the importance of getting your scheduled check ups and colonoscopies after your bowel diseases go into remission. My 65 year old father had a deadly bout with ulcerative colitis 30 years ago. He beat it and has been the picture of health for the most part. However, he never went to get his 5 year colonoscopies. On May 31 this year he went to the ER for a belly ache he had for probably a few months. He was told possibly colon cancer that spread to his liver. The next week it was verified as stage 4 colon cancer and told he had about a year, if all goes well. And two weeks after that, he started chemo. We thought he was really sick from the chemo as he still had his belly ache and unable to eat much, but he kept optimistic. He lost about 20 lbs between the date of diagnoses and this time. He really started to look like death so we brought him to the ER last Monday, July 8 and they found he had a perforated colon. His waste had been leaking into his gut for possibly weeks. The doctor suggested he go home for the last two days under hospice. Against medical advice, he had the surgery to do a partial colectomy to repair the perforation and remove the largest area of cancer. After the surgery, the surgeon told us that this is the worst cancer he has ever seen when going into the abdominal cavity. His Greater Omentum (a kind of fatty flap that covers the organs) had thousands if not millions of tiny cancerous cysts. A healthy person has none. Although it was looking really bad the first day, he has made great strides. He had to have dialysis twice, now has an ostomy bag and a colostomy bag. The colostomy bag attaches near the stomach to kick out anything that his small intestine (ostomy bag) can't. This may need to be attached to him for the rest of his days. Today is day 7 and he is still in the hospital. We have hopes of him returning home, although they are keeping an eye on his abilities to have care from home otherwise he will need a nursing home. Please, everyone, make sure to have your colonoscopies and other suggested tests even if you are not feeling terrible. Colon cancer really has no symptoms, until it does, and then it may be too late. My dad has always said he will live to be 120 and now he might only make it to 66, 67, if we are lucky. Ulcerative colitis or ANY disease of the bowels can morph into cancer if not watched very carefully. Get those polyps taken care of before it gets too far gone.
Colon Cancer Warning: Hi everyone. I wanted to... - IBS Network
Colon Cancer Warning
Thank you for sharing your story. I had a colonoscopy recently at age 25 for a reason very similar to the ones you mentioned. I hope everyone who uses this site reads your post. I hope your father lives another 60 years! I'll say a little prayer for him.
Thank you! At least I caught one person's attention :). Spread the word. I hope your results came back or come back ok. I have also had 3 colonoscopies by the age of 30. I'm now 34. Not fun, but I'll take that over this terrible colon cancer any day. A little update: he is doing pretty great and we might get to keep him for the year he was originally promised, if everything keeps improving. Surgery can be a wonderful thing sometimes. He had his dialysis port taken out yesterday and was bumped up to soft foods like squash, fish and oatmeal last night. Blessings!
Blessings, indeed! Keep us updated--love to know more as this journey continues.
I will most definitely try to remember to do updates.
Update: We are now at two weeks in the hospital. Hopes were high that dad might be able to go home last week. They were keeping track of his white blood count as it was a smidge high. The morning he was supposed to go home, Thursday, July 18, the WBC# spiked. They had a feeling his small intestine had perforated. After a CT, they discovered lots of fluid in his abdominal cavity, ie, infection, but no small bowel perforation (that's the good news!). They hooked up two drains to his abdomen, one near his lower right rib cage, and one near his left hip bone. This one specifically drained 8 cups of fluid in a matter of hours. Over the weekend, they have drained probably another 8 or 10 cups of fluid. His WBC#'s are looking better now and this drain will be hooked up to him for the rest of his days. Friday and Saturday looked a bit hairy and you could see the depression setting in. However, yesterday, Sunday, July 21, he has summoned up enough gusto to fight once again. He has interest in trying Mayo clinic in Rochester, MN. My mom will be speaking to his care team about this today. I don't know if it will help him at all, but it's worth a shot.
Further update for today: Mayo Clinic is out. Insurance will only switch over care providers if there is reason to believe Mayo Clinic has medical available to him that his current hospital does not. Additionally, Mayo clinic is a 5 hour car ride and in order to have medical transportation (ambulance) take care of getting him there, it falls under the same category as listed above. This could easy get very very expensive. If there was even a 50/50 chance they could help him, mom has suggested selling a property to get the funds to cover the expense (they own two duplex rentals, their home, and a little lake cabin) ,however, they could turn him away just as easily, so we are going to continue with care here. Poor dad. On a side note...my wedding is set to take place October 26th. In light of the current circumstances, we are getting married this Thursday, July 25, no matter where he is. It's important my dad be part of this, so we will work around him. If he gets his nutrition and calories up to par to sustain life, we could have him for a little while longer, but we can't chance another 3 months when he has been given only weeks.
So sorry that you are all going through this, but I wish you all the best for Thursday and hope it turns out a good a day as possible.
Thank you so much!
Update: July 24. We are now on day 17 in the hospital. We were told on Monday afternoon that chemo will no longer be administered. His cancer is too progressed and he is not strong enough to endure starting it up again. His first and only round was on June 19. He was ready to fight like a champ! I think he still thinks he can get back to it.
Aside from hoses and bags being attached to him from all angles, I would say the hard part now is watching him hallucinate. He keeps seeing different birds of all things. He had seen pigeons in his room about a week ago, a couple of nights after that, he thought I was looking at swallows on my phone and he wanted to see, and then two evenings ago, he believed he had a duck on his lap and he was petting it, then out of no where it just poof! disappeared and he was left wondering where it went. He has tried to eat his blanket in his sleepy fog twice now too. Last night, he drifted or zoned out and all of a sudden his arms stretched out in front of him. My mom gently asked him what he was doing. He (still zoned out) said he was trying to type, but his fingers weren't long enough. Then he threw an arm in the air and said "delete it!". I must admit, I had to turn my head for a giggle of silliness. If you can kinda call him out on his "day dreams" and bring him back to the present, he gets a smirk and will admit he doesn't know what he's talking about, but he remembers.
I still can't believe it. The guy didn't have a fighting chance from when he found out about this cancer. It's just eating him up and there's nothing anyone can do about it. Just like that...no more weekends at the lake, no more last minute road trips to the casino, no more cold red beer on a hot afternoon, just no more.
this has raised my anxiety as Im 25 and have had some awful on/off symptoms since jan 2018 but all flared up after stress or an infection. Having a GI referral currently so waiting to see if I can get more insight - thanks for making us be more aware. Prayers going to your poor dad, what a warrior
Thank you jalapeno1234. You are very welcome. It kinda makes me feel horrible looking back on all of the people from the past who went through something like this...cancer, losing a parent...and not really giving it or them a moment of reflection and really feeling what they went through. I know how it feels now. It's aweful. There are 6 of us kids all ranging from 27 to 43. I am 34. I feel robbed like I should have another 25 years with my father, alas, here we are. Things can happen so quickly. If your folks are still around, make sure you let them know as often as you can how wonderful they make your life.
In regard to your tummy problems...it sounds like what I am going through and got diagnosed with a couple years back. I have been told I have 'post-infectious IBS-D'. Somewhere along the line, I got bacteria or a virus or something, it threw my colon all out of whack and it has yet to recover. At it's peak, they checked out my calprotectin levels with a stool sample collected at home. The first reading came back close to 500 (normal is 50 or less). However, a month later, they checked it again and it did read right around 50. Calprotectin has something to do with the proteins in your gut that are fighting a bug or infection. I have been checked head to toe, inside and out, and all tests came back ok except that I have "spastic colon". lol. It sounds waaay cooler than IBS-D.
yes! I prefer spastic colon too haha :P. Did you get a colonoscopy? I am settled just fine knowing its IBS but on and off have seen what looks like red in my stool, only occasionally but it doesnt look like hemerroid red .. but most of the time I just get normal colour so dunno if its cause for concern..I think mine deffo is like yours tho, I took flucloaxillin in May and as SOON as I took it my already - annoying ibs went from a 5/10 to a good 8/9 out of ten..what other symptoms did your dad get before he got diagnosed?
Good morning. I have had 3 colonoscopies, actually, and like you, I had also seen red in my stool, and on the toilet paper afterward. I'm chalking that up to a fissure or hemmie. Colonoscopies all came back fine. The only medication I have ever been on is an anti-diarrhea pill. I hate taking those. I'd rather be actually going to the bathroom than not and get all backed up.
My dad had no symptoms other than a belly ache. Honestly. I have been reading and reading about symptoms that are cause for concern for colon cancer and he only falls under one symptom out of like 10. No blood in stool, no lack of appetite, no vomiting, no fever, just a belly ache.
Praying for your family! I’m so sorry to hear about what you’re going through. Please keep us updated and I hope tomorrow goes well.
~Lia
Thank you so much!
Update: It is now day 25 for dad in the hospital. He was moved from Essentia to a neighboring hospital with what's called Vibra care, yesterday. They supposedly provide the same level of care for terminal patients, but at a lower cost for insurance, plus it's a smidge closer to home for us driving to see him daily. He's not doing any better. I think he's starting to accept the fact that he's not getting out of this alive. A few evenings ago when I was visiting him, he told me that he was told he needs to eat more as his "food numbers" are negative (hospital lingo: he went from a 2 to a 1.5?) and he's going in the opposite direction he should be. This is obvious, though. The real kicker to all of this is, my mom was told that his antibiotic runs out on August 6th for insurance and they will likely send my dad home with hospice. Bittersweet. He will get to be home, but then the real clock starts ticking. This has been such an emotional rollercoaster. Devastating right off the bat, then he seems to appear to be improving, then infection, then improvement, a good day, a bad day, and now back to devastation. All in 2 months.
The wedding on Thursday, July 25 was great though. Dad managed to get into a suit with the help of 3 nurses who all took turns crying as they dressed him. We also had a family friend who is a semi-professional photographer take some family photos. I wore my wedding dress and the groom wore his suit. Mom pushed dad in his wheelchair and I walked next to them. The hospital set aside a conference room for us to use for a little over an hour, so we ordered Olive Garden to have a meal after the ceremony. Couldn't have asked for more, and it will forever be in my memory.
Final update: August 13, 2019. Dad passed away on Sunday, August 11, 2019 at home. The entire process from diagnoses to death was roughly 10 weeks, or 72 days. We were all called in to say final goodbyes while we still could as his iv's were all pulled and he had taken a turn for the worst on Tuesday, August 6th. We were able to get him home on hospice care on Friday, August 9th. He had a few good days between August 7th and 9th. We believe these to be his "rally" days. He steadily declined and we woke up Sunday morning to the worst of it. We placed the oxygen on him knowing that today would be the day. After learning that the oxygen is only prolonging his dying process, we pulled the oxygen off of him at 4:30. We had the understanding that it would take up to 6 hours for him to go. It did not. It took roughly 40 minutes and he was gone. Rest in Peace Dad. I will ALWAYS love you!
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