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scans again...

eibod
Posts: 160
Joined: Mar 2011

My husband goes for scans again this week, to see if this second round of chemo is working.
Went to the oncologist appointment today and the colostomy pouch burst while in the
bathroom. We had mistakenly not packed an extra wafer. The drs office sent someone out
to the nearby hospital to get one for him to put on. He was in the bathroom for 45 minutes. He hates his situation so much, was so upset about it. I have a hard time
getting him to go anywhere since the operation, after this experience today, I guess
it will be harder to get him to leave home. The erbutuxs make him look like he has raging
acne. He wears a hat to hide it. Can't shave, so feels like he looks so ragged. His feet
bother him so much at night that he hardly rests, and is having horrible headaches. Hopefully the scans will give us some good news. Life is sure different now, but I am so grateful that he is still here. He was originally given 18 months. Next month will be number 18.

AnneCan
Posts: 3692
Joined: Oct 2009

I want to wish you good results. I am sorry your husband had such a difficult expereince at the onc's office. Does your husband have an antibiotic for the rash? I am on erbitux as well, + when my rash got a little bad my onc prescribed an antibiotic. It has really helped. I never thought about the shaving issue for men; that's tough. I hope good scan results will over-ride these other issues.

coloCan
Posts: 1956
Joined: Oct 2009

during one of my FOLFOX sessions I felt a warm sensation slowly moving across my belly. I stopped readingand wondered why I was feeling this so I made sure no one seemed to be looking and then I lifted up my shirts and saw that my wafer/flange (I use a two piece) had begun separating from my skin and the molten magma erupting from my stoma needed to be dealt with right away....Mt caregiving girlfriend had a med appointment so she wasn't with me so I started yelling for my nurse and when she came asked her if she could help me clean and change myself. she Unplugs my IV wire and wheels the cart to the bathroom while I'm next to her using both my hands to keep my mess to a minimum....Once in the bathroom,I discover I only took an extra pouch but not the wafer and I started to cry. We ended up (and am I ever thankful for those little adhesive-removal pads)cleaning myself around the area exposed as we decided to try to keep as much of the wafer that remained affixed to my skin as was and then used (I gotta be crazy) this clear "durapore" tape, I think it was,to secure the wafer all around......til chemo was done and I took car service home and got yelled at by girlfriend for not being prepared......That was the first of several experiences that were not too pleasant involving my bag but you know what, I didn't go thru all the stuff before and after my surgery to not try to live as best I can...
My chemo is different than your husband's but a colostamate is a colostamate and there's a whole world out there, for better of worse, for us to romp in. again,speaking for myself, "Have Bag, Will Live".......steve

eibod
Posts: 160
Joined: Mar 2011

Thanks so much for sharing this experience. I read it to John and I think he could relate.
The durapore tape was an idea. I bet that was a day you will never forget!!
Have bag will live will be our new motto.Reading this to him made us both feel better.
Thank you!!!

eibod
Posts: 160
Joined: Mar 2011

Hi, yes he has an antibiotic for the rash. I think it keeps the areas from getting infected or too inflamed. But he still breaksout on his scalp, face, neck and some on
his chest. Thanks for your comments, I think today was just rougher than normal,

Fight for my love
Posts: 1530
Joined: Jun 2009

After my husband got his permanent colostomy,he had a couple accidents too.Luckily they happened when we were home.I could help with cleaning and get the supplies for him.My husband hated the colostomy for a while,for a couple of reasons,but after a while,he learned to live with it and accept it.It really takes a while to suck it in,I hope your husband will get better with it over time.

Hope for a good result from the scan for both of you.Take care.

eibod
Posts: 160
Joined: Mar 2011

How long did it take your husband to adjust? I know that after a while, it will get
better. Our oncologist says that nothing works as well as God's ideas, but we do the
best we can with other options. Probably a good way to think. His colostomy is definitely
better than the chronic diarrea that he had for so long. I appreciate your thoughts,
thank you for responding.

TMac52's picture
TMac52
Posts: 358
Joined: Aug 2010

HAVE BAG WILL LIVE !!!!!!

coloCan
Posts: 1956
Joined: Oct 2009

myself of this as well at times; took it from that old TV show, "Have Gun,Will Travel" with actors whose names i no longer remember...That was pretty thoughtful to go out and get supplies from hospital--I didn't think of that and chemo center was affiliated with a hospital not far way....Like I never leave apartment without my keys and wallet, A bag,wafer,tail clip,wipes and adhesive remover are with me too....Its difficult to look at, adjust to, accept and live with at first but after a while, you learn to love (and respect) it, the stoma, that is.......,,,,,,,,,

Fight for my love
Posts: 1530
Joined: Jun 2009

I think it totally took 6 months for my husband to get used to it.For us,in our area,we don't have a colostomy support group.My husband thinks it would be better if we had a support group in this area,then he could meet real people with colostomy to listen to their experience,then he would get over of it quicker.If you have a local support group,if your husband want to contact with them,it would be great.

eibod
Posts: 160
Joined: Mar 2011

I am not sure if there is a support group here or not. John would never join one if there
was. This site has been a wonderful help to us, I read and relate to him. There is so
much experience on the site, and everyone is so helpful with suggestions.

tootsie1's picture
tootsie1
Posts: 5056
Joined: Feb 2008

I'm so sorry your husband had that humiliating experience. I hope it won't set him back too much on going out. On the other hand, look at him still here! He's outliving the number they gave him. Awesome!

*hugs*
Gail

eibod
Posts: 160
Joined: Mar 2011

Thanks Gail. Yes he has survived the number they gave him, and as hard as the past 1 1/2
years have been, there have been some good times as well. Appreciate the hugs!

Crow71's picture
Crow71
Posts: 681
Joined: Jan 2010

You've got such a great outlook. Just wave at month number 18 as it passes by. Hanging on to gratitude is difficult. It's uplifting for me to hear you be so grateful in the face of all of this. Thanks for that.

I had a colostomy for about 8 months and an ileostomy since last April. I've had plenty of moments like the one you describe. I just try to learn and laugh it off. My current stoma is named Mr. Dribbles. We get along fairly well now. He also spewed all over my oncs office once, but I wasn't really his fault. Try to stay relaxed.

Take Care

Roger

eibod
Posts: 160
Joined: Mar 2011

Gee Roger, we hadn't thought of naming the stoma. I'll suggest that to him, but might
be afraid of what he comes up with!!!!! I think my attitude has improved a good bit since
being exposed to everyone on the site. It keeps you from feeling so alone with dealing
with this illness. Thanks, Brenda

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

initially the only ones who could make me feel better about my colostomy were the stoma nurses at Mayo. I am forever grateful for never holding their noses around me (I was almost paranoid about the smell) and their loving attention to my emotional needs. Surely they were sent by God above? I wear quite thick glasses for reading and mid distance and my sight was way worse while going through chemo. I had many blow outs because I could not see well enough to get the dang wafer on right. And many mind "farts" cause I never seemed to have extra supplies with me! augh The absolute worse mess was 4 days after chemo- and my bowels were moving way too fast, I was dehydrated and very very dizzy. I could not get the bag on straight and kept blowing through them. I literally had sh*t all over the bathroom, my bed and myself. I had to call for the paramedics- and I laid there knowing they would go by my bathroom, they would see my crap covered bed and various stages of fecal matter all over me. Oh the horror. I was pretty sick, in the hospital for a week that time- and the horror of my bag blowouts was, to me,the primary issue!
Please let your husband know we have all been there, some of us more than once with blowouts! And thank god for stoma nurses, for chemo nurses, for the paramedics and for others in the same boat. They are the ones who get us through the icky times dealing with the impolite turns of this damn Beast!

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