My 19-year-old is getting a colonoscopy Friday - UPDATED

Kathryn_in_MN
Kathryn_in_MN Member Posts: 1,252 Member
edited June 2012 in Colorectal Cancer #1
UPDATED***
All is well.

After giving me a scare (fainted while sitting in the chair pre-procedure, which the nurse said is common) all went well. The GI took a few tissue samples to check under miscroscope for early IBD, just in case, but said all looked well and he is good to go until age 35. His labs came back normal. His pain is gone and he actually ate a large meal afterwards. He's been afraid to eat due to pain every time he eats, so he really hasn't eaten much for a week. They gave him literature on constipation. They think he does have IBS. After all we'd talked since my dx, I would think he would understand it is not normal to have a mix of constipation, diarrhea and normal stools. That more than a very occasional diarrhea or bout of constipation is not normal. He said, "I just thought it depends on what I eat, and don't really pay attention." Arrgghh! I thought I got through to my kids about paying attention.

The other frustating thing for me is that he doesn't want many of his friends to know he had a colonoscopy. This is the perfect educational opportunity for them, but he is afraid of the teasing of many of the immature ones. He thought the prep and the procedure were really not a big deal, and was very glad to have his mind eased that there is nothing wrong in his colon. It could help people like his father (52) realize it isn't a big deal, and they should go get screened. But I have to respect his wishes. He told me I could not tag him in anything on FaceBook that mentioned him getting a colonoscopy. It is ok to tell family and his close friends, and my friends - but not to let all his friends know...

I'm hoping this was just a freak constipation episode at the same time as something else going on that caused those swollen lymph nodes. If he has any pain in the same spot again, we may just have the appendix out. I'm usually not in favor of any procedures that aren't absolutely necessary, but I'm a little concerned in this situation. At support group someone was there that started with misdiagnosed appendix cancer - not found until it grew into the colon. And on the forums, I've heard of a few other appendix cancer stories that worry me. The father that adopted his baby had several bouts of mild appendicitis (symptoms just like Michael had) before finally it got bad and they took it out. The same situation happened to a classmate of his. So maybe if this flares again, he'll just have it out. Hopefully it won't and we'll not have to worry about it.



ORIGINAL POST:
When I started complaining to my primary doctor of bloating, cramping and pain in my abdomen that was associated with emptying my bowels, and blood in my stool on and off at age 45, it was blamed on my IBS getting worse. I'd had it under control for years and said I didn't believe that was the problem. The doctor gave me a new IBS med (since removed from the market) and had me increase my fiber uptake (already higher than anyone I know). On continued visits, I was still misdiagnosed, with no mention ever for a colonoscopy. Even after a CT scan (following a bad kidney infection) remarked "probably mild sigmoid colitis with reactive lymph nodes," there was no mention of colonoscopy.

Since then I changed clinics, and have a new primary physician. Last weekend I took my 19-yr-old son to the ER with right-sided abdominal pain. We were worried it was appendicitis. A CT was inconclusive - the base of the appendix was a bit swollen, but overall it was within normal range. He did have some enlarged lymph nodes. His white counts were slightly elevated, but no fever. The surgeon wanted to take out the appendix just in case. We tried an ultrasound to see if they could find the appendix. Evidently if they can push on it during ultrasound, they can tell if it is reacting correctly or if it needs to be removed. They couldn't see it when they tried, but did note that he had enlarged lymph nodes in the area of his pain, and the colon was full of stool. The ER doctor said we had three choices: go home, have an appendectomy, or stay for observation. His advice if it were his family member would be observation. Since we were out of town, I felt more comfortable with that too - I didn't want to be driving home and have an emergency situation on our hands. They figured if it was his appendix, within 12 hours or so we should know, because he'd start to get a fever and his white counts would go up, and his pain would increase. But none of that happened. They rechecked white counts and they had gone back down to normal. His pain started to get lower too. He'd been bouncing between 4 and 7, and it dropped down to a 2. So we were going home. They had him eat (he'd been on IV only in case of surgery), and an hour later the pain got severe again. This is what happened to start it all - an hour after he ate, the pain started. So we stayed. Knowing it wasn't appendicitis, and with a surgeon assigned as his admitting doc, nothing was getting done. If he couldn't do surgery on my son, he wasn't sure what to do. He ordered a full panel of labs, but for Monday. I didn't see any point in sitting around in a hospital far from home when they were doing nothing. So after waiting long enough, his pain came down enough that we left Sunday night.

Yesterday I took him to my new primary clinic. Full labs were ordered, and a colonoscopy was suggested, since this seems to be tied to GI tract, and considering our family history. At age 19 he is having a colonoscopy, when I couldn't get one at age 45. I am so glad we switched clinics and this one is very aware of colon issues. They want to make sure what is going on - and rule out tumors, Chron's or colitis. They do think he has IBS, which I have, and my mother has. Even though I've talked to my children multiple times, my son thought nothing of his diarrhea and constipation issues. He thought it was all due to what he eats (which is a big factor, but still not normal). It turns out, that while he does have normal stools often, almost as frequently he has constipation or diarrhea - something not normal. This weekend he passed a little tiny hard stool Saturday night. Then Sunday morning he passed a little diarrhea. Sunday night, a couple hard tiny nuggets again. He has pain just to the right of his belly button - very focused spot. I think that may be right around where the colon turns to head from the right side to the left side. I think it is very likely he has impacted stool. But even if that is all it is, we need to find out why it happened if we can. He has taken stool softeners, but still hasn't really had much pass. He hasn't had much food in a few days, but since they saw his colon full of stool, there should be something moving on out.

His pain is lower today again - he hasn't been eating. He's too worried that the pain will flare back up if he does. He is drinking plenty. Today is day #1 of his low residue diet. Friday he has a colonoscopy. I'm hoping doing the prep solves his problem and they don't find anything wrong with him. But if they do, I'm very happy our new clinic is so pro-active, so people don't go undiagnosed/misdiagnosed for years before getting help.
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Comments

  • tommycat
    tommycat Member Posts: 790 Member
    What a story---and he's only
    What a story---and he's only 19 yrs. old.
    Will you get the results the same day as the colonoscopy? Thank God the clinic takes rapid action.
    Take care and please post the results.
    Hugs,
    Tommycat
  • abrub
    abrub Member Posts: 2,174 Member
    Even if the colonscopy is clear
    if the pain persists, get his appendix out. I had a clean colonoscopy 6 weeks before I was dx'd with appendix cancer. You can't see inside the appendix in a colonoscopy. If the problem is contained within the appendix, all should be good.
  • steveandnat
    steveandnat Member Posts: 886
    only 19
    That stinks that at 19 your son has these problems. It is great your clinic is being pro active. Pray everything is okay. Jeff
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    Kathryn
    I had my first colonoscopy at 21 at which time they told me, I "just had IBS" as they put it, so when my colon went astray, I figured it was the IBS, bad thing about having IBS.
    Glad you found a great clinic for him to go to.
    I think they have pills for that now?
    Here's hoping for something simple, easily fixable and not too much more discomfort or pain for him.
    Will keep him in my good thoughts part of my brain.
    Winter Marie
  • steved
    steved Member Posts: 834 Member
    A 21st birthday gift for my kids
    If I am still around (and I plan to be)both my kids will be unfortunate enough to receive coloscopies as gifts for their 21st birthdays. The rationale is if you have a first degree relative with colorectal cancer you should have a colonoscopy about 10 years younget than their age of diagnosis- I was 31 at diagnosis, hence the 21st gift.

    I do hope they have perfected the capsule cameras or something even better by then (my kids are only 5 and 8 now) to save them the discomfort.

    Good to hear they are taking your son's issues seriously,
    steve
  • ktlcs
    ktlcs Member Posts: 358
    A Story
    Katherine

    First let me say that I will always remeber how kind you were when I first joined the board after my husband's dx. It will be two years next month that I lost him and it still feels like yesterday.

    Anyway, her's my story. In Feb I was experiencing the same symptoms as your son, only difference was with some vomiting. My GP sent to ER, they immediately thought appendicitis, white count slightly elevated, no fever, had the CT with contrast, ultrasound the whole works. Turned out no appendicitis, but still in pain hovering at an 8 (they actually put me on morphine it was so painful) was admitted for four days every test in the world but a colonoscopy and only because I wanted to get the heck out of there. The endoscopy should chronic inflammatory something and H-Pylori infection. Treated me with IV antibiotics and I went home. Experienced pain every time I ate, thought it was a result of being NPO in hospital for 4 days. 1 week later, it all happened again, same pain, same location etc. Both times I saw my husbands GI Dr who this time INSISTED I have the colonoscopy immedately. End result..all clear, no polyps, no anything EXCEPT a small abscess caused by diverticultis? Never even knew I had it. Had it drained, some more IV antibiotics and I've been fine ever since.

    So that's the long way of saying it there are many things that could be causing his pain, most of them unrelated to the beast. I'm glad he's getting everything checked out, and will keep him in my thoughts. I'm sure you'll find it is something that can be easily dealt with

    Kathy
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Scope
    Hoping that all goes well with your son - he is so young. Maybe they can get to finding out what is causing him so much pain. Please keep us informed.

    Kim
  • pepebcn
    pepebcn Member Posts: 6,331 Member

    Scope
    Hoping that all goes well with your son - he is so young. Maybe they can get to finding out what is causing him so much pain. Please keep us informed.

    Kim

    Hope the best for tomorrow !
    praying for him!
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member
    He did great tonight
    He did great with the prep, and said it was no big deal. He doesn't understand what the huge fuss is all about, and why someone that needs a colonoscopy wouldn't get one. I'm the same way - I felt the best I had felt in over 2 years when I did my prep. That makes sense looking back - with a huge almost 100% blocking tumor. So my perspective is surely a bit different than someone who is fully healthy.

    I'm a little more nervous than I was before. I went to our support group tonight and the parents of a 25 year old with stage IV CRC whose chemo has stopped working came. As I was feeling confident that the chances are so small that he could have colon cancer at his young age, the reality hit me again. And another woman came for the first time who started with appendix cancer which was missed until it grew into her colon. So that makes me worry that if they can't find anything wrong, we need to press to make sure that they fully check out why the base of his appendix is enlarged, while he has normal white counts and no fever. Maybe I should have let them take it out?
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    Update
    How is your son doing. Been thinking about him and hoping that all is well.

    Kim
  • abrub
    abrub Member Posts: 2,174 Member

    He did great tonight
    He did great with the prep, and said it was no big deal. He doesn't understand what the huge fuss is all about, and why someone that needs a colonoscopy wouldn't get one. I'm the same way - I felt the best I had felt in over 2 years when I did my prep. That makes sense looking back - with a huge almost 100% blocking tumor. So my perspective is surely a bit different than someone who is fully healthy.

    I'm a little more nervous than I was before. I went to our support group tonight and the parents of a 25 year old with stage IV CRC whose chemo has stopped working came. As I was feeling confident that the chances are so small that he could have colon cancer at his young age, the reality hit me again. And another woman came for the first time who started with appendix cancer which was missed until it grew into her colon. So that makes me worry that if they can't find anything wrong, we need to press to make sure that they fully check out why the base of his appendix is enlarged, while he has normal white counts and no fever. Maybe I should have let them take it out?

    As an appendix cancer survivor
    unless they find something else definitive that is causing his issues, push to have his appendix removed. That cancer is a hard one to find until it has spread. Mine had seeded all over my peritoneum before they found it, tho it never went into the colon.

    Alice
  • annalexandria
    annalexandria Member Posts: 2,571 Member

    Update
    How is your son doing. Been thinking about him and hoping that all is well.

    Kim

    Hope you get answers soon...
    it's hard enough dealing with our own health, so much worse when it's our kids. Best to you both-Ann
  • WhatsA_Mom2Do
    WhatsA_Mom2Do Member Posts: 46

    He did great tonight
    He did great with the prep, and said it was no big deal. He doesn't understand what the huge fuss is all about, and why someone that needs a colonoscopy wouldn't get one. I'm the same way - I felt the best I had felt in over 2 years when I did my prep. That makes sense looking back - with a huge almost 100% blocking tumor. So my perspective is surely a bit different than someone who is fully healthy.

    I'm a little more nervous than I was before. I went to our support group tonight and the parents of a 25 year old with stage IV CRC whose chemo has stopped working came. As I was feeling confident that the chances are so small that he could have colon cancer at his young age, the reality hit me again. And another woman came for the first time who started with appendix cancer which was missed until it grew into her colon. So that makes me worry that if they can't find anything wrong, we need to press to make sure that they fully check out why the base of his appendix is enlarged, while he has normal white counts and no fever. Maybe I should have let them take it out?

    Hi Kathryn, I'm happy to
    Hi Kathryn, I'm happy to hear your doc is being proactive in with your son's symptoms. I would definitely push to have the appendix removed. I haven't been on here in forever, but I am happy to see you are doing well. God bless! Dee
  • idlehunters
    idlehunters Member Posts: 1,787 Member

    Hope you get answers soon...
    it's hard enough dealing with our own health, so much worse when it's our kids. Best to you both-Ann

    Hey...
    Hey Kathryn....
    How is your son doing?

    Jennie
  • Kathleen808
    Kathleen808 Member Posts: 2,342 Member
    Kathryn
    Kathryn,
    I'm thinking about you and your son. Did everything go OK? Do you have an update?

    Aloha,
    Kathleen
  • Helen321
    Helen321 Member Posts: 1,459 Member
    steved said:

    A 21st birthday gift for my kids
    If I am still around (and I plan to be)both my kids will be unfortunate enough to receive coloscopies as gifts for their 21st birthdays. The rationale is if you have a first degree relative with colorectal cancer you should have a colonoscopy about 10 years younget than their age of diagnosis- I was 31 at diagnosis, hence the 21st gift.

    I do hope they have perfected the capsule cameras or something even better by then (my kids are only 5 and 8 now) to save them the discomfort.

    Good to hear they are taking your son's issues seriously,
    steve

    I'm 42 but my polyps should
    I'm 42 but my polyps should have been removed when I went in for my first visit around 30 so I guess my kids will have a happy 21 visit also! Poor kids. They're already 13 and 15. Personally I'd like to start earlier so I can feel relief but there are no signs and that would just be cruel to these poor kids.
  • Helen321
    Helen321 Member Posts: 1,459 Member

    He did great tonight
    He did great with the prep, and said it was no big deal. He doesn't understand what the huge fuss is all about, and why someone that needs a colonoscopy wouldn't get one. I'm the same way - I felt the best I had felt in over 2 years when I did my prep. That makes sense looking back - with a huge almost 100% blocking tumor. So my perspective is surely a bit different than someone who is fully healthy.

    I'm a little more nervous than I was before. I went to our support group tonight and the parents of a 25 year old with stage IV CRC whose chemo has stopped working came. As I was feeling confident that the chances are so small that he could have colon cancer at his young age, the reality hit me again. And another woman came for the first time who started with appendix cancer which was missed until it grew into her colon. So that makes me worry that if they can't find anything wrong, we need to press to make sure that they fully check out why the base of his appendix is enlarged, while he has normal white counts and no fever. Maybe I should have let them take it out?

    Good for him! The test is a
    Good for him! The test is a lot easier than we think and that's how so many people end up waiting and missing out on time. Good that he knows this young and will follow up throughout life. Any results?
  • Kathryn_in_MN
    Kathryn_in_MN Member Posts: 1,252 Member

    Kathryn
    Kathryn,
    I'm thinking about you and your son. Did everything go OK? Do you have an update?

    Aloha,
    Kathleen

    I've updated
    I updated at the top of the original post.
  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member

    I've updated
    I updated at the top of the original post.

    Good to read he made it
    Good to read he made it through this colonoscopy without anything major found. I had been looking for your update.
  • jjaj133
    jjaj133 Member Posts: 867 Member
    Kathryn, so happy about the
    Kathryn, so happy about the good news. I can imagine how scared you were. I know you will "stay on it", whether he likes it or not!
    Hugs,
    Judy