recent colostomy depressed

[Cassie1]

In Febuary 2020 I had to get emergency colostomy I guess I was about an hour away from dying I don't remember a lot don't get me wrong I am grateful for my life but the depression has been horrible! My husband and children have been very supportive but unfortunatly my mind isn't. I no longer feel like myself I feel like all I can smell is the bag I feel disgusting and ugly my body just isn't mine anymore i'm to weak to work and I don't even feel like going out of the house. Is there anybody out there who has felt like this and knows how to get past this? I can't even stand myself anymore I feel like i'm at my wits end please help

[ot dave]

Hi Cassie.
Sounds like you are around 8 weeks post surgery. That was probably one of the toughest times for me, more physically then mentally. I was not able to do the things I had before due to the healing process. That and the fact that I was also battling cancer. However, once the cancer battle was over, I had my depressive episode as I was now "stuck" with this colostomy for the rest of my life.

You need to know that depression is very common for many ostomates. Some folks need time, some need counseling, some need meds, some need a combination of all of them. For me, mine was what we call down here in the south, a "come to Jesus meeting" with my wife! We had two small kids to raise, and she informed me that she wasn't doing it alone! My wife is the best...she did it in a loving manner! If anything, the cancer/ostomy has improved our relationship...and it was already good before the cancer/ostomy.

Again, depression is a normal part of this healing process. If you are continuing to struggle, you should seek out your physician and let them know what is going on. Everything you are feeling is normal, and expected. You're body is going to slowly heal over time. This is a marathon, not a sprint. Once your body starts to feeling better, your mind will follow. But again, seek help from your physician if necessary.

As far as ostomy maintenance, we can help with that here. Lots of experience on these boards. As a colostomate, I irrigate my colostomy each morning, and routinely have zero output until I irrigate the next day. It gives me back some control. Might be something to look into once you get to feeling better. You can browse the irrigation forum and see if it's something you might be interested in doing. As for me, when I have output in my pouch, I rinse it out with warm water(I wear drainable pouches). It removes the output, makes the pouch feel like a new one, and it helps to reduce odor as the odor causing agents are now rinsed out. Something to try anyway.

Hope some of that helped. Let us know what we can help with...

David

[niebs]

David is right on in his comments. I had my surgery last October and ended up with two ostomies (lucky me). I went through total shock to depression/anxiety and to top it all off battling a terrible infection and other issues. I did get on some meds for anxiety and depression and those helped and in addition began seeing a therapist. Fast forward six months I feel like I'm in a good spot and getting a lot more comfortable with my new normal.

Time is a great healer of things but we all are impatient and want things to happen quickly. You will get through this and talking to others is a great way to start. You are not alone in your journey.

Mark

[Diane C]

Hi Cassie,

The comments above are so true. In fact, I began reading and using this discussion group before I had my colostomy. Since then, I needed to get an ileostomy. Time does help and so does support from a loving family and friends. This group here can give you so many answers -- and even humor -- when others just don't get it. I know there are other groups (including at Facebook) but the responses I've received here are so responsible. What you're going through after emergency surgery makes sense. I had over 40 years to contemplate getting an ostomy -- a big difference! Plus, these times right now are not the most uplifting. If you can possibly get out (with a mask) and take a walk (my advice to myself today), do it. A change is a big help.

I realize you can't meet with others right now but support groups with face-to-face people also exist. I don't know where you live but you may want to join one in your area. See https://www.ostomy.org/support-group-finder/ Our local support group is on hiatus right now but we usually meet monthly, have time to schmooze, hear a speaker, and then break into groups to give needed support. During this pandemic, we're still getting a newsletter and can call or email folks. This may be of some help to you.

Hoping you feel better soon. You definitely are not alone. Many of us up here have been where you are now and you'll get through this.

[BillGK]

I had a different reaction. This happened to me while I was away from home, taking care of my mother. The surgeon completed the surgery, walked out of the operating room, called my wife, told her to get here ASAP and gather the family because he felt that I wouldn’t live through the night. Later, during a follow-up, he told me that I was super-lucky that I had gotten my life back, that it was entirely possible that I would have lived out my days in assisted living or a nursing home, had my systems shut down any further. I was over 65 years old. My son-in-law is a biochemist who was working on sepsis treatments at the time. He told me that survival statistics for my condition were 15%. So I spent way more time being thankful to be alive than being depressed, and I still feel this way.

Odor is no reason to feel depressed. If you are having odor you have a correctable problem. Perhaps a visit to a wound ostomy nurse is in order, if you can’t get to the bottom of it on your own. Do the same with any other physical problems you are having with an ostomy. Work on them, get them resolved. In the grand scheme of things a colostomy is not hard to manage. I find it so easy to manage that I almost prefer life this way, as there is no urgency to find a restroom when we are making cross county trips or when I am on the 13th hole of my golf game. I can literally manage my ostomy in less time than the natural way of handling waste. If you have a body image problem, there are some wonderful videos on YouTube of young women with far more difficult situations to manage than yours and mine. They have ileostomies. Just watch them. They are inspirational. Young women who are determined to lead normal lives and have fun. The point is, taking on one’s problems is theraputic, in and of itself.

Finally, for those of us who were near death the recovery process is LONG. It takes the body far longer than a couple of months to recover, to get back to normal. One of the great healers of body and soul is spelled T-I-M-E. Give it some more of that, work to manage your problems, think of how lucky you are, and see how others, much younger than you (?), are leading full and happy lives.

[SeaQuest]

Another potential big difference is that many of us had time to prepare for this change prior to our surgery where it appears this may have been thrust upon Cassie1 without much preparation. After working with my doctors for a few years, I was finally told that an ileostomy was my best solution. After finding out exactly what that meant, I went for a second opinion at what I hoped would be a more reputable hospital. In my region, that meant Vanderbilt. It tickled me, but they require (or at least at that time required) all new patients have a session with their psychiatrist prior to working with their GI doctors. It was only one session, but the whole agenda was to determine whether I was in the right mindset for the change that was about to take place.

I thought I was prepared - I didn't like it one bit that I was going to no longer be "normal", but everything in life had always been easy for me so I figured this too shall pass. As prepared as I thought I was, post-surgery sucked. For the week I was in the hospital, all I did was sleep, wake up long enough to pray that I would die, and cry myself back to sleep. Within 24 hours of making it home, I passed out due to dehydration and ended up back in the hospital for another week. It was a full two weeks before I ever touched my ostomy. I hated every moment of my life and continued to pray that I'd just not wake up.

It's now almost 7 years later, and I realize that I had quit being "normal" years prior to my surgery. It is not normal to use the bathroom 20+ times per day nor to have to keep a spreadsheet of these activities; mine listed the time of day, the urgency, whether or not there was blood, and the food/drink I was taking. As others have so nicely stated above, I now have the ability to participate in life again. I no longer have to schedule life around the bathroom. It's not fun that there are still periodic accidents, but I've learned to deal with them. Having a very supportive spouse has made this much easier; her words and actions make so much of this easier. But the internal psychological scarring is something we have to address individually, and that part takes, in my opinion, both time and getting up and participating in life again.

I wish the best for you and hope that this journey is getting easier with each passing day.

[To Dream a Dream]

Cassie: Way back in 1977 when I had emergency (middle of the night) surgery for the first ileo, I experienced many of the thoughts & feelings you have stated. Overwhelmed. But once I began to feel the physical benefits of having lost the worst of a diseased colon, having much better nutrition & fluid electrolyte support, my mental state improved greatly. I found myself becoming more optimistic, encouraged & appreciative of the wonderful ways I had actually been blessed by the changes to my body. Difficult, I well know, to understand this early in your healing process. But not impossible. Our UOAA members attest to it. Faith in yourself thru a newfound strength of your body will develop hope for your future. And an abiding love for those who have reached out to you as you weather the storm.

[devlev123]

Dear Cassie,

I don't think you stated your age in your post, but I am 58. I was 28 when I needed to get an ileostomy. I had chronic ulcerative colitis, and it ended up being emergency surgery. I didn't even really know what an ileostomy was or how I was going to look and what would be going on. I had no time to mentally prep for what was going to happen with the surgery and what issues I may have in the future. I was newly married, ( just under one year). I had a great surgeon, but after the surgery and recovery, I was kind of on my own. If an issue came up, I did the research on my own, made phone calls, and tried to get it resolved. I also had two kids post surgery, and everything went fine. As far as odor, if your bag fits properly, there should be no odor coming from the bag.( You may also want to try different products. I started out using a 2 piece product, but now i use a one piece product.) When you empty the bag, that is another story! There are many products on the market you can use. Most of these are drops, or little packets you put in the bag to prevent odor. If you give coloplast a call, or convatec, their reps are very nice and super helpful. They will be able to recommend products for you to try and send some samples. Try to get in touch with a stoma nurse in your area, or contact your local VNA. I have turned to them a few times over the past 20 years and they are very helpful. I can see how you would feel depressed, your body has changed, you are worried about smell, etc. In my situation, I was always running to the bathroom, leaving social events early, getting sick, getting tested, and being on prednisone for months at a time. Right before my surgery, I was so sick I was in the hospital for a month, then my colon perforated and I needed emergency surgery. I don't love my ileostomy, but it saved my life. Once I recovered from my surgery, I could be normal again.I could go skiing, travel, go out with friends, get through a social even without having to run to the bathroom 10 times. And I could have kids. To me, even though it took some getting used to, it gave me my freedom back. My husband had no issues with it, he was just happy I was alive and healthy.