New Ostomate Caregiver

[Julie Jo]

Hi, my name is Julie and my fiance was diagnosed with stage 2b colorectal cancer in May at age 46. He underwent 6 rounds of chemo fairly easily and then had a resection the end of October that did not go as planned. His original surgery was on Monday and the doctor was able to reconnect without the need for a temporary ileostomy. Unfortunately, complications occurred throughout the week and he wound up with an NG tube and then a second surgery where the doctor tested the reconnection and still could not find a leak but did find an abscess and thus he was given a temporary ileostomy. It was a long 11 night stay in the hospital. I can't succinctly summarize all of the changes that we've been through in the past month. Struggling with output being too high, have had a rough bag change or two and some skin changes for which we are seeing an outpatient ostomy nurse for this week. The positive news of all of this is that they found no cancer in his biopsies of the resection (which only occurs in about 20% of patients). He restarted chemo this week (he has six more rounds). This first round hit harder than any of those pre-surgery which I think may be cumulative effect, but also he just had two major surgeries a little less than a month ago.

That being said, the hardest part seems to be the mental/emotional toll it's taken on him/us. He really won't reach out to anyone who is in his shoes. He's had one night post hospitalization where he's opened up and he's very unhappy. We had an impromptu date night the evening before and he said that's the only night he's been happy since surgery. He is also having major anxiety about the reversal and it not going well (which I completely understand), I'm anxious about that too, to the point that I'd like second opinions from other surgeons. In general, he's a very glass half full kind of person, active, loves his family and his job and is the life of the party. I don't know how to encourage him to seek out help from others (as in joining a forum like this, support group, etc.). Any advice would be appreciated.

[To Dream a Dream]

Welcome to our Discussion Board where you will meet others who have had similar challenges. This link: https://www.ostomy.org/ will take you to the official UOAA website where you can find much detailed information including free literature, local support group listings & videos thru the Search feature. Another suggestion is The Pheonix Magazine at this link: https://phoenixuoaa.org/
Your friend is understandably overwhelmed by the changes & setbacks he has faced. Please continue to check back here on the Board frequently for personal input from our members 24/7. Where you'll soon find that you are not alone. Know that many of us have shared your feelings & experiences. UOAA is here to help.

[SeaQuest]

I was in a seemingly similar situation to your fiancé - an active, happy, healthy 40-year-old. It was about that time when I noticed something was not right with my health. Prior to this, I had never failed at anything - everything in my life was easy. I have never taken drugs, never touched alcohol, and ate reasonably well, but something caused my colon to quit working. After 3 years of doctors putting me on seemingly every possible type of medication, I was told that an ostomy was my best option. Upon hearing that, I made an appointment for a second opinion at Vanderbilt who required that I meet with a psychiatrist (or psychologist - not really certain which) prior to meeting with any doctors. I laughed at the absurdity of that requirement. Vanderbilt had the same recommendation of a permanent ileostomy.

After my surgery, I was in the hospital for a week; dehydrated within one day of going home; and went back into the hospital for another week. Those first two weeks were the worst weeks of my life. I slept, woke up, prayed that I wouldn't wake up again, and would then cry myself back to sleep. It's a major life change - one which I had time to prepare myself. Your fiancé wasn't afforded that same time to prepare himself for the change. I can easily see how this could put anyone into a state of depression - I'm not saying he nor anyone else is depressed, but this sudden change can be a horrible realization.

I wanted to speak to no one - not my wife, not my WOCN, no one. I still don't talk to anyone, but I do keep tabs on this board's posts, and I find a lot of great, practical tips. I can do this in the privacy of my own time and not have to worry about what other people might think. There are people here who have decades of experience. It's now been 10 years since my surgery that I now know saved my style of life. I'm still capable of doing most anything I want. I even joined as many as 60,000 people in RAGBRAI this year and rode my bike across the state of Iowa. It was 510 miles long and had temperatures sometimes over 100 degrees. I truly thought my propensity to sweat would cause non-stop appliance issues, but I read about some of my options here and reached out to manufacturers to get samples, and they worked great.

If he isn't already aware of this board, let him know it exists and that you've learned something from some of the strings. Maybe he will take your lead and read a thread or two himself. I hope his remaining chemo and potential surgeries all go well, and he doesn't have to contend with this for the next 50 years, but for ever how long he does have his ileostomy, the more he seeks answers, the greater likelihood that he will be more like his old glass half full self.

SeaQuest

[BillGK]

It’s totally understandable, especially when such a life-changing health event occurs at such a relatively young age. One of the great healers is T-I-M-E. Just help him get through what’s in front of him and things might settle in a bit better.

My thought in reading this is that he could join forums, but not reach out by posting. There is so much experience here, so many birds of a feather. He could just spend some time reading posts from the past and come to realize that he isn’t alone and that there is life after the shock of it all.

[Mysticobra]

As said above.
Time.
When I first got mine and even when I had a J pouch I didn't want to live anymore. When I got my end ileo. It was even worse.
I could not even look at the stoma.
Frankly I just wanted to die. Period.
All the pain prior to all the surgeries. And then ending up with a stoma.
Time saved me.
I have no other advice.
Only support I had was my wife also.
Maybe he'll come around as I did. Once I came around it was freeing and a wonderful feeling I thought I'd never have again in my life.
Time.
Good luck.
Send him our well wishes.
Let him read some of our stories.
Richard.

[ShawnS]

Julie Jo, how is your fiance and you doing? I can certainly relate, but it happened to me at a much younger age and a much longer time ago. (Ileostomy in 1970). I would definitely concur on the value of help with a mental health professional. I should have had more of that. (There was nothing post surgery). And what made it worse is that back then I think they rushed this kind of surgery prematurely, as my symptoms wouldn't have justified it in today's practice. At any rate, it is and will always be a compromise in the life of a stoma-owner, the clarity of which I wish I had had decades ago.

[To Dream a Dream]

Julie Jo: Hoping this finds both you & your fiance further along on the road to recovery after ostomy surgery. I include a link from a recent UOAA video that may introduce you to not only the many support resources available, but also to the caring community of dedicated individuals who plan & implement them. May you find them of use. https://www.youtube.com/watch?v=NhRo3SxBPCo
To those who have responded to this post: A big thank you for sharing your own stories & experiences. May you all be blessed by your concern & willingness to help others who follow us along a road less traveled. Often strewn with rocks & forced detours. Yet, bringing us together as those determined to press on.