Seeking Advice and Support After Emergency Surgery

I am just about a week out of the hospital. I had an emergency colon resection due to a diverticulitis bleed. I almost died. I came out with a colostomy bag, my worst fear. I could use some advice. My output is pretty low right now, which scares me sometimes. I cry so much; it's annoying. I don't feel like I will ever leave the house until it is reversed. I have a huge incision down the center of my stomach, so it's pretty slow going right now. Does anyone have severe sweats? It's driving me crazy. I am extremely depressed. I haven't even showered yet; the home health agency doesn't seem to have any good advice on waterproofing. Help!

Hi and welcome to the site. First of all, it will get better. You have just had major abdominal surgery, so give yourself a break and don't expect too much, too soon. Showering will probably make you feel a whole lot better, and there is no preparation needed. Those appliances are designed to get wet, so don't worry about that. I shower with my appliance on every day, and I lather it up just like the rest of me, as it gets dirty from sweat and the occasional unavoidable backsplash when emptying. Don't worry about going out if you don't feel like it, but do try to get up and be as active as possible. Walking is good, but no heavy lifting at all, as you are at risk for hernia. If you are up to it, a walk outside might cheer you up too. If you are having any specific problems with products you are using or leaks, just ask. There are lots of great people here to help you. Hang in there.

Terry

Thanks for your reply. I was told I had to keep it dry. I'm not up to doing anything alone yet anyway. I have a nurse coming every 3 days and an aide if I need. She is coming tomorrow for the first time, so I'm looking forward to getting my hair washed! I walk around my house for now, but I'm still in pain from surgery. I guess I should be happy to be alive. I got 8 units of blood and was bleeding out.

I remember the complete and total depression and anxiety that I had after my permanent ileostomy. I was freaking out because I couldn't even sit up! Everyone said it gets better, but I was skeptical. They were so right! It's been 4 years, and it's better every day now!

I have been on this site since my third week, and this group is awesome—you can ask any question you want. (I know you must have a ton; some you might think are stupid—ask away!)

Tiffany

Thank you. The depression is horrible. I cry all the time. I'm thinking maybe they don't want me getting my incision wet, yet that may be the shower issue, although I was pretty sure they said the stoma shouldn't get soap on it. I don't know; it's all a blur. My first post-op is next week, so I will have to make a list of questions. I am praying they are right about a reversal in a few months. I won't go back to work with this. Luckily, I work in a school, and my last day was tomorrow for the summer. I can't see a social life until it's reversed. I won't go out for more than an hour or to a doctor appointment. But like I said, I'm just home a few days.

My Ostomy Journey: Jearlean | Hollister

I had emergency surgery because of a leak two weeks after my bowel resection. I was totally not prepared either. It is overwhelming.

I am now 8 weeks out and I promise it will get better. For now, just breathe. Do as much walking as you can; it is very important for your recovery.

The nurses can be very helpful. What I do is write down all my questions as I think of them, and we sit and I have them answer them before we get down to business.

As far as the shower, get some Glad Press and Seal freezer wrap. That's what I used for the first few weeks. Now, I shower on appliance change day and I take everything off and shower. I didn't start to do that until last week.

I am lucky; my husband was able to help me change things the first few weeks, as I couldn't even look, let alone help. But we had a good nurse, and she was so encouraging. I now do everything myself, and I never thought I would be able to.

This group has been an amazing resource and has helped me so very much. I've only been reading the forums for about two weeks. If you can, be sure to watch some of the Hollister and Coloplast videos. Also, there are many Youtubers; I am sure you will find a few that you will like and that will be helpful to you.

Try to get outside for a little bit every day. The depression can be bad, I know. But fresh air and sunshine can do wonders.

Hi and welcome to the site. You've come to the right place.
Education is key on this new journey of yours. I suggest you check out UOAA, the United Ostomy Association of America. It's our national organization. Also, Ostomy101.com. You will learn about foods, blockages, skin care, clothing, ostomy products, travel, activities, exercise, and a whole host of other tricks of the trade. You might also want to check out a local support group near you. Just remember you are not alone on this new journey of yours. Wearing a pouch does not define who you are. There are solutions. You've got this. Ask all your questions. We're all here for you. Best of luck.🌈

Hi Robjac, welcome. Patience is the key, and nutrition—eat the foods you like, but protein will help you heal. It's likely anesthesia left you foggy and hard to remember instructions, but you will get better info from all the good folks here.

We have all been where you are right now, but there is a light at the end of the tunnel. It's just a time factor; hang in there.

Regards, IGGIE

I suspect it is your incision that you were told not to get wet. I have a wound where a drain is placed that I cannot get wet. I ordered some protective sheets from Amazon that were designed to keep PICC lines dry. Though I may try the Glad Press and Seal freezer wrap suggested by mimipark when my current package runs out.

You can wash your hair in the kitchen sink to keep other areas dry.

You do need to be careful about cleaning soap off the skin when changing your appliance. But you can shower with it on or off. There is no need to keep it dry. In fact, you can swim with your bag on. No problem.

The only limitations are the ones you put on yourself.

That said, this whole thing has been a terrible shock. Let yourself grieve. Have a good cry or get angry and beat a pillow. Whatever works for you... get those emotions out. Then do something that makes you happy. We can't control everything that happens to us, but we can control how we respond. Don't hide in your house until your reversal. When you feel better, go out. Have lunch with a friend or visit a park or whatever you would have done pre-stoma. Life goes on. You are lucky to be alive. Enjoy yourself.

Welcome from Oz 🇦🇺

You have received all the info that you need so far from the above. Don't overthink this and don't rush it; let your health come to you, and it will.

I am having a good cry from all of your support. It is so helpful. My diet is limited to no fiber now, and I am also diabetic. The summer is so hot here in FL; getting out for walks will be a challenge, but I know I have to. My son leaves tomorrow, so I am going to be alone. He has been my gift from God! I'm pretty sure I was told not to get the stoma soapy, but I'll have to check with the Dr. The Glad Press and Seal sounds good; I'll try it. I bought some large dresses, but you can still see a bulge under them. Any advice? I am so happy I found all of you… crying again! Good cry this time.

The people who know and love you will not think twice about what you are wearing. I am having the same issue. Being new to a colostomy, like you, I am very self-conscious about dressing as well. But I figure people who don't know me won't realize what or why my belly looks puffy now. So I do try to wear a closer-fitting tank first to try to hold things closer to my body, and then I choose a looser-fitting top over that. I know you said you are in Florida, so it's much warmer there; perhaps some nice cotton button-up sleeveless tops might do the trick.

For the walking, I have a racetrack in my house. LOL. When I can't be outside, I set the timer for 5 or 10 minutes, and then I walk the hallway and the rooms. You'd be surprised how many steps you get in just doing that. Mornings can usually be cooler; try to get out then. All I could do at first was walk my driveway 10 times. Then I kept increasing the laps.

Welcome!

Your body has been through terrible trauma. Emergency surgery and waking up with a colostomy is a lot to process. I am about 15 months out from my surgery and have a colostomy as well.

As others have commented, it will get better. So much good advice already from members on this site. We have all been there. I understand your concerns and can tell you I had some of the same.

Hang in there. Baby steps. Please do be careful lifting anything. Keep us posted on your progress.

Hello

Many soap products will leave a residue, and the adhesive can fail on your appliance. There are one or two that work, but I cannot remember the names; however, someone will. I only use warm water to give the area a gentle clean.

Low residue diet and diabetes are extremely challenging. Supplement with protein shakes that have a low glycemic index to help your healing.

I have 2 ostomies: colostomy and urostomy. I had weeks to prepare myself mentally for the change. I cannot imagine the shock of waking up to an unexpected ostomy.

I wear tops that are loose in the middle. Yoga pants are my best friends these days. The bulges that seem so obvious to me are overlooked by everyone else. People really don't study you that closely.

Try driving to the mall and walking there... air conditioning will make it easier.

Robjak2

Good on you for discovering this website early on your new journey.

It took me a while to find this sanctuary. I believe it saved my sanity (although some on here might disagree it has been saved😁).

This MAO forum, humor, and music are my sanity-saving outlets.

Brain fog/confusion, to me, was caused by waking up from surgery with an undulating alien on my belly and a shitload (sorry docs & nurses) of talking heads around me with instructions. This lasted for several days. I don't believe they realized how my brain was just screaming outrage at me in a volume so loud I could not hear nor understand them.

After the initial shock, which took its sweet time - (more time than I care to share) my brain repeated…”just breathe”

Take heed to what ostomates share here - they have all been through what you are currently experiencing - some not so bad, some much worse - It will take time to heal, so that is what you should concentrate on for now. In the meantime, take deep breaths and then…..just breathe…

jb

You are all so wonderful, crying again about how blessed I am to have found you. Yes, I do laps in my small condo, but I do them to get moving. The bag is so bulky I'm not sure how anyone wears anything but loose dresses, and it can still be seen. I'm having a slow output right now that freaks me out. I was on Mounjaro, and it still is in my system and slowing my digestion. I've been trying stool softeners. I have a million yoga pants, but they seem like they would be too constricting. I am still only 10 days out from surgery, still have a huge long scar with staples, so I hope when I heal I'll figure it out. Tuesday is my first post-op. Thanks to all, you are amazing!

No need to waterproof, just shower like normal. In fact, you're increasing your chances of infection by not keeping things clean and dry. I had severe sweats, and it ended up being caused by medication. I started taking it in the morning instead of at night, and no more wet sheets. As far as being depressed, not wanting to leave the house, etc., that should change with time, and you have to want to get better and move on; it's a mindset thing. My buddy Denzel told me a while back, “You can be bitter or you can be better; it's your choice how to live life.” Your mindset is your best or worst friend; each person chooses how they want it to be. Good luck, it gets better, and eventually, you'll say to yourself, “Why did I stress over all that stuff?”

You are only 10 days post-surgery, so you are very likely still bloated from the surgery.
I am 6 months post-surgery now, but I remember waking up looking pregnant; none of my clothes fit. My surgeon said it was the gas they pumped into me, and it will take 6 weeks to go away. In reality, it took around 3 weeks.
Give yourself some time to heal, walk as much as you can, and you'll soon see it does get better.

My chemo doc had me walking in my house, 1 minute a day, every day. He said I could do it in my slippers, I could rest if 1 minute was too long, and then each week I increased it by 1 minute a day. I'm now able to walk a mile in 30 minutes on a good day, or vacuum and clean the house if I don't go walking. Some days I do my walking on the stairs in our house just to keep my knees strong. I bet you're right about the zipper up your middle needing to stay dry; I had that too. They even had to redo the zipper surgically because the idiot PA took out all the staples even though it wasn't healed. Be gentle with yourself; you are busy healing from all the surgery, and it must have been hard if you had to get a lot of blood, so rest as needed!

Do you ever get the sensation that gas or stool feels like it wants to come out of your rectum? It's so annoying since I know it can't. It gives me a bellyache.

That is usually some mucus trying to work its way out.

Terry

Thanks, nothing is coming out. I guess that's good.

Well, hello there. I had a different nurse change my colostomy bag yesterday, and this morning I had my first major leak. I had to change everything myself for the first time. I hope I did it right. Not sure if I cut the opening big enough, but time will tell. I'm so upset. This set my emotional recovery way back. I'm trying to say I did good, but please pray I don't leak this time! I know it's something many of you do yourselves, but only a little over two weeks out of surgery, I've never done it. Ugh!

G-Day Robjac,

The more times you change your own bag, the better you will be. Help is not always at hand, so keep practicing. Well done.

Regards, IGGIE

Hi 👋

I understand you are upset, but it might be a blessing in disguise that you have to change everything yourself. The more you do it, the more confident you will become.

I remember the first time I changed mine after getting home from the hospital. My hands were shaking. I had no output for 2 hours. I was sure I hadn't cut the hole big enough, so I called an ostomy nurse and asked if he thought maybe I had strangled my stoma! He just laughed and said no, just give it time, and he was right, of course. These stomas are tough customers.

You did good. Give yourself a pat on the back. Leaks are going to happen. I didn't have one for the first 3 months after my surgery, thought I had it all figured out, and then it happened. We've all been there.

Get the concept of changing your bag by yourself as a negative experience and put it into a positive perspective. The faster you learn to do it yourself, the faster you recover and move on in life.

Terrifying the first time. It gets better.

You successfully changed it. If it leaks, then you still did as well as the nurse who is experienced.

Sit yourself down and take that last statement in. Leaks happen, even to experienced people.

You changed the bag on your own. Celebrate!

Hi and sending you a hug. Cry, scream, watch a movie, cry again—so, so normal. June 23 will be a year for me since the same thing happened to you. I was on vacation and not home when an abscess pierced my bowel, went septic, and almost died. My surgery was the following day, and I woke up with exactly what you described. It took several weeks for me to travel home. I'm hoping you have a wound/stoma nurse. If not, call your surgeon or insurance and request one. They can even come to your home. Take a shower. It's a lot, but you will feel better. Call a good friend! I was not a very good patient and wanted nothing to do with the bags. It was unbelievable. But I was alive. I don't remember exactly when I decided to make friends with my stoma, but I named it ET. And it helped. It was the reason I was able to see my grandson graduate high school last month. As weird as it sounds, you will get through this. Nine weeks ago, I had my reversal. It's a journey. Ask questions, and you are— that's part of the journey. Sending you best of health and strength in the next few weeks as you heal. Keep asking questions.