Struggling with Insecurities and Seeking Support after Ileostomy Surgery

Hello,

I am new to this and I didn't expect to be writing my thoughts on a blog such as this; however, God has a strange way of changing our paths to that which we never expected. I recently had ileostomy surgery and it was not planned. I had been hospitalized and was in so much pain that for some reason a surgeon came by my room and saw how much pain I was in and explained that this may be the only way to relieve any of it. Now don't get me wrong, when I was first diagnosed with Crohn's in 2005, I was informed that there was a surgery that could be done but it might not solve the issue and my understanding was that it could be permanent. This was not something that I would have ever agreed to. However, I am now 27 and I guess due to the amount of pain I was in, the superficial side of me must have gone to the nearest corner and decided to let me make the best choice for me at the time. I turned 27 in pain and in the hospital. I can't remember anything but all the pain. On my birthday, I do remember that I felt especially awful that I didn't get to enjoy it with friends and family the way I wanted to. I just shut everyone, including light (strange thing, I was very sensitive to light), out and didn't want to do anything but lay there and hope that the pain would finally subside. I was hospitalized a second time after having the surgery and spent a week in the hospital and that was enough for me. I decided that I needed to move on from this and requested to be released. I was tired of being poked, prodded, and observed with very little help to get over the pain I was feeling, physically and mentally, being in the hospital and not being able to do the work that I enjoy or have the freedom to come and go as I pleased. I just wanted my life back. I still want my life back. I want to be able to wear what I want without issue or worrying about if people are looking at my bag or can smell what is filling up inside it. I wish I knew what I was doing. I wish I knew how to be okay with this. I wish I knew how to push insecurities aside and just forget about it. But each time I move, I realize that it's there. Each morning, I struggle because I know that I have extra steps to take before I can shower and when going out, I am constantly worried that someone will think I'm hiding something under my clothing. Is that weird? I don't know. I just wish I knew someone who understands what I am going through right now in this moment. Someone I can talk to about it and not feel like I'm grossing them out or sharing too much. But I guess it is what it is. Everything happens for a reason, right? So I might as well live the life I was given. Right.

Hello jadeapples. RIGHT!
Having a stoma when you were not expecting it is certainly a shock and a steep learning curve in the beginning. However, with the passing of time and the accumulation of experience most of us start to get used to the new life and find ways to manage and enjoy what we have rather than mourn for the things we may have lost. Many of the things you mention are worries than impede your ability to move on. If you can work on diminishing what you worry about then things tend to get back to an acceptable 'normality' much quicker.
Expressing your thoughts as you have done in this post is a great way of sharing with others those things that probably only 'they' understand to the extent that you are experiencing these things. I enjoyed reading your account of the first stages and I hope you will keep us informed as you work through these initial difficulties as it is people like yourself who can be of enormous help to others in a similar position.
Best wishers
Bill

I know it is hard and we all go through it at first. Know this, you are still the person you were before and you are stronger for what you have been through. Anyone who looks down on you for who you are should not be in your life. Wishing you all the very best. Charles

Thank you so much for your kind words. I really needed that today. I started back at work today and it was a struggle and a bit discouraging because a lot of stuff went wrong or didn't go as smoothly as I would have liked, but I know better for tomorrow. Again, thank you so much for responding to my blog. It means a lot.

To Bill, thank you so much and I am really trying to figure this thing out. I am also working on keeping things positive and making the best of the life I have been granted because it could have very well ended for me, and I appreciate the gift of life with or without a bag hanging from my stomach. So thank you so much for responding to my blog, and I don't know your story but I wish you all the best as well. Thank you again.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Hi Jadeapples, I wanted to respond to your post and welcome you to Meet an Ostomate. This is a very good place to feel safe, ask lots of questions, and to just voice frustrations. In the beginning, this new normal is not normal at all and very scary. Please know that in time, having a stoma and wearing an appliance will get easier. In the beginning, it really is overwhelming learning about products, techniques, stoma care, and overall personal care. There are so many products on the market that the entire process is just too much. Many manufacturers will send samples... I would suggest trying them all to see which products work best for you. I saw that you mentioned pouch odor. I use Na'scent or M9 for odor control, and it really helps lessen the smell. I acquired my permanent ostomy three years ago because of severe UC. I was in shock when the doctors said my only cure was to have surgery. It took some time for me to accept the situation. I was very sad. What really helped me feel better was attending ostomy support groups. The UOAA website, www.ostomy.org, lists all of the support groups by state. These groups are very helpful and connect those walking a similar path. Take care Jadeapples and keep posting all of your questions and concerns. MAO is a wonderful group of people who are here to help, share, and support. Keep positive! Sincerely, LadyHope

Hi Jadeapples, I think all of us have been through some of what you posted. One thing I have learned from all of these ostomates is that we do not let the bag define who we are. While we all have similar experiences, we may cope in different ways. I did not want an ostomy, but it was necessary to save my life. My attitude was that I was not going to feel sorry for myself, and I didn't want anything to do with sympathy from anyone. It took about a month for me to get accustomed to life with a bag. Is it a challenge? Hell yeah, it is, but I am playing with the cards that were dealt to me. My goal is to make my life the very best I can with the position I am in. If it were not for so many great, understanding people, it would be much tougher to deal with.

, the first thing I would ask is, do you feel better physically after the ileostomy surgery? Has that improved? I recently had surgery, coming out with a temporary ileostomy. Even though I will probably only have it for a short period of time because I have the option of getting it reversed, I still feel like I completely understand how you feel. I have been diagnosed with IBD for the past 15 years and suffered with the symptoms probably at least 15 years before that. I had a distant family member who lived with a bag. I heard of his experience as a young child, and I always feared ever having to live with one because of his description. I have now had mine for about 8 weeks now and can honestly say that in many ways the beginning weeks were everything that I feared. I have since settled into a routine in caring for and maintaining the ostomy. I have completely changed my view and feel that if I were forced to, I could live with it and still feel normal. One of the things that helped me is watching some of the explanations of ostomates on YouTube. You can see how they have come to accept it and also see through what they say, to the pain and strife they have gone through in dealing with it and coming to acceptance. There are many tips from other ostomates and products out there to help you find some comfort in being out in public; feeling safe that people will not know that you have this. If you are a person of faith, then rely on that to help you through the low periods and dark times when you feel like you cannot deal with it. God will not give you more than you can handle. Even though you may have made that choice, you were led in this direction and probably for a reason.
One thing for sure is, you are now part of a community of people who, for the most part, will find it easy to have compassion for someone else who is going through what they have. No one else can truly understand what a person goes through with IBD until they have experienced it themselves. You are not alone. Do not feel funny or awkward about reaching out. There are many people who will comfort you.

Hi Jadeapple,
I can feel your pain. I had UC for 7 years and suffered a lot. When I was told that the only solution was an ileostomy, I said that I did not want to have a bag hanging on my body. My doctor explained that it was the only way to save my life. That made all the difference to me. I wanted to live a better life. It took a few months to adjust to my new life, but it certainly was a better quality life and I am thankful for that. You should experiment with different products to find something that is comfortable to you. Manufacturers are glad to send you samples if you ask them. There is a multitude of products out there, such as deodorants, barrier rings, barrier strips, etc. Try them. Also, I strongly suggest that you find an ostomy user group in your area and join. You will gain a wealth of knowledge, as well as meet a lot of people who are in your situation and see how they adjusted.
I wish you well and hope your outlook gets better as you enjoy your new life.

dfinflorida

"Everything happens for a reason, right? So, I might as well live the life I was given. Right?" Maybe, Jade. But do things always happen for a reason? Just because there's a reason does not justify anything. And who says you must live the life you were given? Wouldn't you be a lot better off living the life you want to make for yourself? You're only 27 years old, and I cannot begin to imagine all of the incredible miracles in medicine and healthcare that lie ahead in your near future. As far as your wish to find "someone who understands" goes, that's already been granted. You found us...for starters. Sure, there's little doubt in my mind that "He's got the whole world in His hands"; but I suspect He wants you to step up to the plate and take your best shot at whatever He chooses to throw at you. Swing away!

PB

Jadeapples, you are stronger than you or anyone else will ever know! Going through a radical lifestyle and physical change takes time. It took me about three years to figure out how to get back in shape when I got my ileostomy and urostomy (at the same time). It was tough in my 20s because my friends were starting families, going on trips, and advancing in their careers, but I realized it was silly to compare my cancer survival and experience with anyone but myself. I thought at the time that in-person ostomy support groups did not help me either since there was typically a 30+ year difference between me and other groups - to further complicate the group, they would separate everyone by urostomy and ileostomy, then the Crohn's and cancer people would segregate... I guess it's the human condition to make tribes. The bottom line is all of our bodies have been cut open and most of us are healing, or think we are healed, and reaching out to connect. It's ongoing and it takes time. Books, YouTube, and FB connections only go so far and there is a lot more advocacy and a lot more young ostomates I hope you can connect with. It wasn't until I was inspired by a girl who I met at a surf camp did it feel easy for me to talk. Wishing you health and happiness!

Hi Jadeapples,
Hope you are feeling much more secure with your appliance and self-confidence. I read your working; that's a big step. We're here whenever you find the time to stop in.
Best wishes~

I feel so much better after reading all of your comments! I have gotten a lot better at taking care of my bag and accepting it. Sometimes it's still difficult but it's getting easier to move past it. I would love to join a group, however, I don't think there is one in my area.