Ileostomy Misery - Self-Consciousness & Practical Struggles

I got my ileostomy in 2016, and have been absolutely miserable since. It has nothing to do with "Ruby", it works fine, no weeping or sores; it's me! I feel like a misfit with this pouch in me. First of all, I'm only 4'8" tall, so the average 11-inch pouch lands on my thigh. If I roll it up and tuck it into my panties, the Velcro closure cuts into my groin (plastic clips are worse). I can't use a shorter bag/midi because my output is too heavy. Plus, I feel extremely self-conscious and Ruby tends to be rather rambunctious with noise. Am I the only one who feels this way?

Hi Teri.  Sorry you feel like you do but happy about "Ruby" doing a good job for you.  I called Convatec (1-800-422-8811) a few times over the years and they were most helpful in addressing any problems I had.  I'm an old guy so my concerns would be way different from yours but we both need to be reasonably comfortable and confident.  I work outside a lot, play golf, fish the surf at the Jersey Shore and do everything I did before my additional appendage.

Wish you the best and hope for a progress report.

Respectfully,

Mike

Thank you, Mike. I'll definitely give them a call. And just for the record, I'm a pretty old gal myself. Grew up on Long Island myself.

Have you tried changing your diet for lower output? (And thereby a smaller pouch) I've experimented over the years and changing this or that can really affect output. Might be worth a shot. High fiber foods will always fill fill fill, it's so annoying. Seafood for me is also a problem although so delicious, it needs a lot of planning. But this is really individual...just start experimenting.

Matt

Hi Matt.

Thanks, I'll give it a try.

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Instead of having the bag hang directly vertical, I hang mine at a 30 degree angle. Also, I use a maternity band to keep the bag close to my body. It does not sit below my waist.

Hi John.

Thank you. Unfortunately, my stomach is about 2-3 inches below my belly button, but I'll definitely try an angle.

The process of adjustment at a physical, emotional, and spiritual level is so complex, and different for everyone. I was pretty miserable for two years, I truly thought it was the end of the world. I was very depressed. But, like all things when you get to survive, by the third year things started to change because I started to change, to realize I had to change my mindset and attitude, and behaviors; I finally began to deal with this at a higher level, and realized if I was to live with this somewhat successfully and find some fulfillment in life I was gonna have to change, and change came slowly. It is five years now, and things are going very well, but it took a long time to get here.

One thing, a little one I could advise you is that if you are going to become successful at this, I believe the one thing we have to become is food scientists. We need to know, and perhaps keep track and record, the digestion and output of different foods and diets, the times that it takes to digest, and what appliances go with your style of food consumption. I realized I had to become a food scientist and try to figure out how to plan and live with this new ostomic life. It was a struggle but there are ways out and somewhere we find the determination to control as much as it is possible this new situation.

One little example. I used to love eating oranges, loved them. The first orange I tried, the output was so massive, and the orange came out almost as identical as it went in. Now, there is only one kind of orange I can eat which is very watery, and very delicious, otherwise a regular orange with all that fiber will just be overwhelming. So, I learned that one lesson early. Also, I found apples are much easier and less output. I also learned the importance of chewing, I think for the first time in my life. Good luck with everything.

Curious Soul

Thank you so much for your reply. Glad to know that the emotions are normal for being an ostomate.

Have a couple of friends and a nephew up your way. Everett and Edmonds, and nephew in Port Angeles. I am looking to be up there in October for nephew's wedding. Maybe I will get a chance to say hey!
Judi

I am so sorry you have been feeling like this. I can relate fully to your situation. When emergency surgery gave me Maxine, I felt lost and alone. Before going under for the surgery, I begged the doctor not to give me a bag, that I wouldn't be able to handle it. When I woke up in ICU, the doctor had to tell me he had no choice, that I was within 3 minutes of passing away and he had to do it. I cried for hours. How would I ever live with this on my side? Who would accept me as a person? Would my husband and family still want me? What about all the food I used to love, would I be able to eat it? So many heartbreaks, worries, and questions. Going home was the worst. I had broken my foot 12 days earlier in a horrible fall in Salt Lake City at the VA Hospital and had to have surgery to screw it together. I had only flown in to the Salt Lake City VA hospital for a check-up on some throat surgery that I had there on the 7th of June. That was a planned surgery but the fall the night before, coming back from dinner was not. I was ordered non-weight bearing for 90 days. So here I was, cut from stem to stern, stapled together, and non-weight bearing on my foot. The first week home was sheer hell. The VA sent me an aide, and I did my PT at home, but I couldn't do the 16 stairs to my bedroom and to where the shower was. I had to wash in the kitchen sink downstairs and use the half bath there as well. My husband got a twin-size bed and fixed me a place to sleep in the dining room. I slept there for about two months. Then, one day I had had enough. I literally crawled up the stairs and told my husband to put the shower chair together, I was taking a shower!! My healing had begun. I started seeing a VA therapist who helped me put a bunch of things in perspective. Then, I found this support group. Meetanosteomate.org has been a lifesaver for me!! I have learned so much about ileostomies and supplies. I have read other people's stories, and some of them were so much worse than mine. I realized that I am alive!! That is the most important thing of all. I could have died, but God allowed me to live! Then, when Maxine failed after 7 months and I had to get New Maxine, I started to feel all the depression and utter frustration all over again. Healing was very hard this go-around, plus my relationship with my husband was and had been failing, but I had the support group and my therapist to help me through. My latest surgery was February of this year, and New Maxine is doing so well. I moved into my own place on June 1st and started a new, part-time job as I retired in April of 2017 from 18 years in the Mental Health field. My therapist helped me to understand that I am here on this earth for a reason. God brought me through two life-saving surgeries. He has a plan for me, and even though I have lost my lower bowel and now have an ileostomy, I am still here. I am not sure what He has for me right now, so I have to keep going until it is revealed to me. Sometimes if you take the sadness and frustration you are feeling about your situation and put it toward helping others in the same situation, it gives you purpose and you feel needed, which gives you hope. Try this as well as seeing a therapist to vent your feelings to. A grief therapist is often good because we have lost part of ourselves as well as we have to change how we have been living, and we need permission to grieve about this. Give yourself time, breathe, talk with God. You will see that you are going to be fine. Good luck to you!