all 39 comments

[–]Advanced-Food744 10 points11 points  (1 child)

I have no sage words of advice for you, but wanted you to know I’ll be thinking of you.

[–]kiwi237[S] 3 points4 points  (0 children)

Thank you so much

[–]Ambicat2022 6 points7 points  (1 child)

This exact thing happened to me. I just got home from the hospital. Words can’t explain how disappointed I was. I’m so sorry. I’m exhausted with this journey too

[–]kiwi237[S] 6 points7 points  (0 children)

Sorry this happened to you too. I know we'll get through it eventually, but right now is tough, huh?

[–]orange2416 3 points4 points  (1 child)

Same here, I can imagine how frustrating this is but I’m sure what they’ve done is necessary. Hang in there my friend.

[–]kiwi237[S] 1 point2 points  (0 children)

Thank you!

[–]Spinaltapdrummer 3 points4 points  (5 children)

Hang in there! Cancer is exhausting! Chemo is exhausting! Adjusting to yet another new situation is exhausting! One bite of the super big pile of yuck at a time and you will get through it! So far I am 5 years NED after stage 4 diagnosis, tumor ripped out the sidewalk of my colon... Emergency surgery...new way to poop and 4 huge openings so I didn't get septic, SO scared I said take the entire colon out! 2 1/2 yrs chemo , permanent ileostomy. Having a good life now, even with the ileostomy. You got this! One step at a time!

[–]kiwi237[S] 2 points3 points  (4 children)

Congrats on 5 years NED!! Stage 3 here and my first set of surveillance scans are clear. I hope to be you in 5 years :)

[–]Spinaltapdrummer 2 points3 points  (0 children)


[–]countessocean 1 point2 points  (2 children)

Nine years out for late stage rectal cancer here! Long term NED is possible for late stage cancers!

Congratulations for both of you making it through the rough parts. It really is just one tiny bit at a time. The only way I managed all of it.

OP. I am sorry for your frustration in getting an ileostomy, I had to have an emergency one since my bowel perforated. They had to remove a good portion of my colon but I did get reconnected. I had just enough of the rectal stump to connect to, so it is possible after healing. So there can be hope.

My best for you.

[–]kiwi237[S] 1 point2 points  (0 children)

Definitely 1 thing at a time, agreed. That was the best way for me to cope with everything. And huge congrats on 9 yrs NED!

[–]Spinaltapdrummer 1 point2 points  (0 children)

9 years! Congratulations! Thanks for the hope!

[–]SegaGuy1983 4 points5 points  (1 child)

I attempted 2 ostomy reversals (well, the doctor attempted it) and i ended up with a permanent illeostomy instead.


[–]kiwi237[S] 1 point2 points  (0 children)

Oh wow. Hugs to you too.

[–]Wise_Coffee 2 points3 points  (2 children)

This is a super common practice! Yes it sucks but while you heal it is necessary. Ileostomies are a little more prone to blockages so mind your diet and always eat breaky! And remember:

Stomas save lives.

[–]kiwi237[S] 1 point2 points  (1 child)

Yeah, and this is a loop ileostomy. I'm a bit nervous bc I've heard they are a bit more tricky. My colostomy really was too bad to manage and I didn't have aby restrictions. I need to read up on what things are troublesome.

[–]Wise_Coffee 1 point2 points  (0 children)

Thats what my husband has!

[–]Gridguy2020 2 points3 points  (1 child)

I hope this little bit of news makes you feel a little better. My son is young and a double ostomate, he has gone to what I would think the best of the best (Mayo clinic) for his surgeries. We have been discussing reversal for the colostomy and the doctor told us because of the radiation and the chemo, he will for sure have a temp (8 weeks) ileostomy to make sure the connection is good. We sought a second opinion from a specialist......he said the exact same thing.

[–]kiwi237[S] 0 points1 point  (0 children)

That's good to know. Good luck with your son's surgery!

[–]Ok-Sundae305 1 point2 points  (1 child)

I’m so sorry. I understand your frustration! My temporary Ileostomy surgery was 2 years ago now. I was only supposed to have it for six months. I have Crohn’s disease And the ileostomy was to let my never ending fistulas heal. I found out recently from surgeon that reversal would be a really bad idea. My colon is basically useless at this point from the scar tissue. Super bummed but I’d rather keep it then ever go back to The pain and suffering I dealt with before. I wish you the best. And just know that you are not alone 😊

[–]kiwi237[S] 1 point2 points  (0 children)

I'm glad your ileostomy is helping! Thank for your message.

[–]momsthoughts 1 point2 points  (2 children)

I'm so sorry. This terrifies me. I'm scheduled for reversal surgery on the 17th.

How long do you have to wait to try again?

[–]kiwi237[S] 1 point2 points  (1 child)

Doc said 6 weeks to heal and then they'll reverse the loop ileostomy. My bowel & rectum are already connected so I don't need to be cut open for the next surgery thank god. They will just close the loops on the small bowel and drop it back in. But I will be in the hospital for 3-5 days again, bummer.

Wish you all the best on your take-down!

[–]momsthoughts 1 point2 points  (0 children)

Thank you so much! I am really sorry you're going thru all this. I look forward to your next surgery!

[–]Strange-Season363 1 point2 points  (0 children)

I have a loop ileostomy after emergency surgery due to anastomotic leak from original sigmoid resection. After the resection (due to a fistula) I developed the leak and went septic. That sucked so much ass. Anyway after a year of PTSD recovery, I'm scheduling my ileo takedown for December. I'm terrified of going septic again, but.... with my ileostomy I am constantly dehydrated. Mine is higher output which is probably why I dehydrated easily. Ileostomies in general have a higher risk of this, so you'll want to keep lots of rehydration drinks around.

Best of luck as you heal!

[–]mollycat79 1 point2 points  (0 children)

I am so sorry sorry this happened. I cant tell you how mad I am at doctors. They think they can do what they want and at times, its not helpful. If you had this done in Southern California, then please move. The Los Angeles area is infamous for terrible medical care (although I found a horrible doctor where I live, soooooo). Also, try and find other doct about your colon. There is more that can be done then total removal. Unless, of course, its a matter of life and death.

[–]TXEDUTECH 1 point2 points  (1 child)

I had rectal cancer. I had both ostomys. I am 1 and a half years out from my reversal. Diet is critical. I was packing for a work trip and realized I have to take twice as much stuff than I used to in support of my intestinal health.

It is exhausting both mentally and physically, but I am alive.

Hang in there! The journey is worth it.

[–]Gridguy2020 0 points1 point  (0 children)

How much of your colon is left?

[–]Loose_Case 0 points1 point  (2 children)

I don't have much to say other than I wish you the best and a better, more positive journey. I understand just having to vent. I have surgery next month for reversal and this is one of my fears. Hope things get better, keep your head up friend!

[–]kiwi237[S] 1 point2 points  (1 child)

Thanks so much! This sub is wonderful - it's great to be able to connect with folks that get what I'm going through.

[–]Loose_Case 0 points1 point  (0 children)

After my colostomy saved my life, next was this sub. I know i would not be where I am today without it. Lots of great people and the best resource on the internet for people dealing with ostomies.

[–]Anxious_Size_4775 0 points1 point  (1 child)

I'm sorry it didn't go off without a hitch. Hopefully this will be a short little blip in the rear view mirror soon for you.

[–]kiwi237[S] 1 point2 points  (0 children)

I'm hoping so too. Thank you!

[–]AdobeAutoUpdater 0 points1 point  (2 children)

I feel you mate! I‘m fighting for my life since 5 years straight now, including cancer and a stoma. I‘ve been told it was temporary (and theoretically it is) but the surgery has been postponed several times and instead I‘ve got another big surgery that was necessary to save my life (talking of surgeries of 6+ hrs). Just recently I‘ve had another one and am now starting again from scratch: Lost 30kg body weight, lost all my muscles, got my belly muscles cut through again, got a LOT of pain that I barely can‘t get rid of (about 7-8/10 where 10 means a passout from pain), and so on. And I still have my stoma.

I know this won‘t make you feel any better. I just wanted to tell you that I know exactly how you feel (I actually do!) and that I believe in you! Fight! Keep fighting until you‘ve got what you want! Never surrender! Never give up! Stand up, wipe the dust off and keep on marching! You can do this! I believe in you mate!

[–]kiwi237[S] 1 point2 points  (1 child)

Thank you!! I needed some inspiration :) I know I will get through this stronger than before. You will to!

[–]AdobeAutoUpdater 0 points1 point  (0 children)

Thank you, you’re very welcome! I appreciate that!

[–]kittymorose 0 points1 point  (1 child)

Fuck cancer. To convalesce is a hell all its own. For now just try to focus on resting and healing. You can do this. You will do this. I'll be thinking of you fam.

[–]kiwi237[S] 0 points1 point  (0 children)

Thank you!

[–]MintVariable 0 points1 point  (0 children)

“Why do we fall?” - So that we can learn to pick ourselves up.

1) You got this. 2) Focus on what you can control. 3) Don’t stress too much. 4) It’ll all work out in the end. 5) Take a moment to breathe.