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Where I Am Now

Posted by Pixie

I'm not usually an angry or aggressive person. If you notice in my earlier blogs, I tend to withdrawl rather than lash out. But the combination of the surprise of what surgery was planned, the lack of communication WITH ME, my lack of having had a cigarette for days without a patch, and her "you are in control" bullshit, sent me over the edge.

My husband said that people kept looking at him like he should try and calm me down but he knew I needed to do this. That this had been building for so long and that if he tried to stop me or calm me down, then I would have just lashed out at him. He was correct.

So my husband took me home and he began to explain to me what they doctors wanted to do and how they planned to do it. He had stayed in my room and listened to my doctor while I was making my escape, running from the security officer, and getting my IV removed. He allowed my doctor to "draw for him" and my husband did his best to draw for me at home to relay the information. It turns out that my fistula was left to grow for far, far to long and had done heavy damage to my bladder but the issue now was my colon and the 98% blockage. With my history of this, it could take much longer to get the swelling and inflamation down and I could continue to irratate it when I ate. They felt the better way, the safer way, to handle this was to give my large colon a break. It was full of waste and it needed time to be able to push the waste through without adding more to it. If they pulled my small intestine out, that would stop "adding to the problem", give the bowel and chance to heal and pass the stool, and then I would be able to have the fistula surgery faster. My husband supported the surgery but if I wanted to wait and see how fast my body would begin passing stool again, he would support that for me. Whatever I thought was best. (He's the greatest man in the world for me, I love him so much!)

He also told me that the doctor told him that if I changed my mind, to call him back and he'd re-admit me.

Thank god!

I really thought I had just basically started over by walking out of the hospital but I hadn't. I could pick up right where I left off.

I agreed to do the surgery. I smoked a ton of cigarettes and took a nice, long, hot shower and that evening we got a call that they had a room for me and back to the hospital we went.

I amazed myself. I was upbeat, smiling, laughing with my nurses who couldn't believe that I had walked out of the hospital earlier, and ready to try and get this done.

Because I agreed to this surgery, my fistula surgery was schedule two weeks after and that made me feel soooo much better.

Surgery went well and my stoma was placed. They were able to do it via laparoscopy so my incisions were small. I also started "putting out" by the time I was back in my room so that was a great sign as well.

That was a week ago today.

I was up and mobile, eating, and able to care for myself by the end of the day Thursday. I got to go home Friday. They went over how to change the bag and the whole system with me on Friday and I had a home health nurse coming on Sunday. I felt good. Sore and maybe dirty, but I felt good and my mood was positive.

My son brought me home and stayed the afternoon with me to make sure I didn't have any issues. My husband was home with me in the evening. Saturday was my first solo day and my house needed attention. I had energy and although I was a little slow, I was mobile. I got up and made my husband a big lunch for him to take to work, made him some breakfast and sent him on his way.

By 11am I noticed my bag was leaking around the ring and had gotten on my nightgown and pants. I was mortified. I had only watched them change the whole thing ONCE and I had never done it myself and I was home alone. I watched a video online and got my steps down in my head and then went to change this myself. It was hard. I made such a mess. It was so gross and disgusting that I just stood their crying for bits at a time. I didn't have a mirror in the bathroom that would allow me to see what I was doing. I had ordered one but it hadn't arrived yet. So I had to walk into my bedroom to see to clean and then back to the bathroom to work with the supplies. My stoma is large, well I consider it large, and it's oblong at an angle. Trying to cut it to fit was HARD. The lady in the hosptial just cut it right the first time but I was back and forth from my room with the mirror to my bathroom with the light. It took me almost an hour to do it and then I had this horrific mess to clean up as well.

The whole thing drained me. Most of you probably have this down to a science but I'm so clunky and unsure that it just sucked my energy right out of me. After my husband went to bed and I just sat and cried the rest of the night. Everyone was offering me incouragement and support and I just wanted to cry.

I wanted to be strong and so I worked at it. When nurse came on Sunday, I was in a fair mood. Not crying but not easy to laugh either. She was so nice and she listened and I told her that I had some itching that had been getting worse thorugh the morning and we went to look at it.

I hadn't put my ring on right and I had stool sitting on my skin and that was irratating it. So she changed it again for me and showed me how to protect this area that was itchy and red and we decided to go without the ring. She didn't like them anyway and said that people do well without it. I had ordered the paste but it hadn't come yet so we didn't use any support there and that was a mistake. By that night I had another pool of feces on my skin all along the bottom. Thank god my husband was here. I got to get in the shower and we stumbled through putting the whole set-up on yet again. And this time it was perfect. No leaks, no itching, plus we had the paste for extra protection.

That weekend was so hard and just wiped me out. I kept thinking of everything I had gone through and how I never should have been in the place to begin with and it just made me feel worse. So that's why I started this blog. To get all that out of me. I put it down for others to see how if I had been taken seriously 2 years ago, I would not have been stuck where I was now.

I went to a doctor looking for help and because they ignored me, I am now in a much worse off situation. It has grown much more complicated and I AM THE ONLY ONE DEALING WITH THAT! It didn't hurt my first doctor to be a complete bone head and deny my symptoms, it only hurt me. It didn't hurt my colonoscopy doctor to deny my pain, it only hurt me. And because of those two my issue was allowed to grow and fester to the point that I require two extra surgeries and I might lose my bladder on top of it all.

I know some of you are looking for a "happy ending" but I'm not there yet. Not even close. I'm fighting my depression, I'm getting out of bed in the morning, and I get though my day doing as little as possible for now. I'm on a mental forgiveness program in my own head. I'm just allowing myself to feel all this horriblness and I hope that one of these mornings I will get up and feel more like tackling life again. I'm just not there yet.

Today marks the one week mark from my surgery. I just had my second home nurse visit and I changed my set up in front of her and did well I guess. I've had to change the whole thing 5 times in 7 days and that was just way more than I bargined for. I know it will get better. It will get easier. I know those things but I still feel very weighed down with it all.

Thank you to everyone who took the time to read this and thanks to those who commented. I don't have a reply option to talk to you all individually so I'll try and post under each part to thank you. My next surgery is a week from tomorrow. This is the one where we actually address the fistula and my poor bladder. Then I will need a third surgery to connect everything back and hopefully I will no longer have a stoma. But that's months down the line.

I'll keep you updated

See all blogs by Pixie
Comments:
Mar 09, 2022
RaenotRay : Oh Darlin. You are so new to the stoma journey. I've had mine six months now, and it's still not perfect. The initial healing phase is tough. Your body is changing, your stoma is changing. It's all very discouraging. It does get better. Not perfect perhaps, but better. You need lots and lots of grace. You also need a primary doctor that you can trust implicitly. Someone that is always on your side. I asked all if my friends who they trusted, and I finally found more than a doctor. I found a friend, and an advocate. I also have a lot of trauma response from my experiences. It's okay to look into an antidepressant/anxiety med, and something to help you sleep. You're carrying a huge load. I'm so glad your husband is the angel he is. If I can help at all, I'm happy to. ??
Mar 09, 2022
Bill : Hello Pixie.
Thank you so much for explaining your timeline, as this puts things in perspective. Of course we would like a happy (or at least a satisfactory) ending for you. However, many of us have been in a similar position to that which you find yourself at present. We therefore know only too well that these things take time. We can be patient alongside you and hopefully support you as best we can. I for one feel confident that a satisfactory ending will eventually come and I hope that you keep blogging so that we can be with you on this journey.
I managed to document all my experiences and feelings in rhyme, and the simple act of documenting it all help me to cope with all the things that went wrong as well as right.
I hope that now you have some competent doctors and medical staff, that your future journey will be better than the past.
Best wishes
Bill
Mar 09, 2022
bowsprit : Some of the things you went through would have devastated anyone, male or female. The first few months after surgery are difficult then things get easier. Hopefully, you will soon be able to say: " All is well that ends well." Best wishes.
Mar 09, 2022
Pixie : Thank you guys so much! I've read all your comments through these blogs and I thank you all so much. No only for the similar stories but for the support. I know I'm a dime in a million and there are so many of us who just weren't listened too.
I thank you all for reading all of my journey so far. It means so much just to be heard. I appreciate your time and I'm thankful for all your in sites.

(Big Hug)
Pixie
Mar 14, 2022
Newbie Dana : Big hugs to you, too! I hope things are slowly getting better for you. I know at the end of your journey you will be in a better place because (no matter what happens between now and then, you will have gained perspective as well.

Yes, some doctors don't listen. It is sad, but many of them feel like they are the next best thing to God, and all the little peons out there (you know, the patients) don't really know what they're talking about, so shut up and just do what I tell you. Then there are the other extreme, as exemplified by the old joke: what do you call the person who graduates at the BOTTOM of his class? Doctor.

I had some really GOOD doctors - and some of them STILL didn't tell me everything, especially regarding side effects. So I ran into things that I had no idea were coming, only to find out that they were widely known side effects, even though not the most common. But it's SCARY when things are happening to your body and you don't know why.

What I did find out is that this group is one of the best for support, information, and a few virtual hugs. Whatever weird thing is going on with your new friend, I guarantee it has also happened to someone on this site. And we all know the terror of changing your appliance for the first time by yourself. And the search for just the right supplies that fit YOUR body and don't leak. And we have ALL lived through that terrible moment when you're in the middle of changing it, and you intestine (however much is left of it) decides to empty itself totally before you get the new pouch in place. (I keep a squirt bottle of Clorox solution on the back of the toilet for just those moments.)

And I know that an understanding spouse can make all the difference between learning to accept and deal with the ostomy, and dreading facing it every day. It sounds like you got a real winner! Give him an extra hug tonight, just because!
Mar 15, 2022
gembally1982 : Oh wow, that is a lot to go through.
I can completely relate with doctors not listening and then making the issue much much worse (Even 6years later I'm still hurt & angry about that) getting to a place of happiness or acceptance takes time, and for some of us it comes and goes.. Its sounds like you have some great support at home with your husband, hold on to that one tightly.

After 6yrs I'm still not able to change my bag standing up.... I can do it at a push, but I never 100% trust it because I learnt how to change my bag lying down while I was still in hospital. So, I still do it this way.I put a towel on the bed (just incase) then have all my supplies on either side of me so I have access to everything I need, with my rubbish bag on my legs. You will find a way that is easiest for you.
(I still can't cut my bags,they come precut ????)
If you aren't getting on with the bags you were given, you could always try something different there are so many out there, but just ask your nurse for samples.
Sending you love and hugs. I promise it does get easier. Xx

Mar 21, 2022
riealla : I label what has happened to most of us as the shock and awe treatment. Things were explained to us, but even explanations don't seem do the changes justice. Living with our body after surgeries and having to adjust with new appliances that don't always work right it can wear tolerances down quickly.
I'm a year and 5 months from the treatments and surgeries that gave me my permanent colostomy. Came home with the knowledge that they were able to get all the cancer, but it was a totally new way of life. Believe me I've had many a cry while learning how to make the bags fit and work for me. Didn't help either that my significant other decided to tell me he was no longer interested in staying right after I got the good news I was cancer free.
It's been a journey getting to where I'm now, and a lot of mental healing not just with the body. If you can definitely think and look into some good support groups and or counseling. I know it's helped me to do so.
Hugs and much ???? love. We all understand!