Random Rant...Beyond Frustrated

I know how you feel, I think that you have to go throw what we have for people to really understand.

I have seen 2 ostomy nurses. who have been no help. I am not depressed just mad and frustrated. If it didnt leak and when it doesnt leak I am fine and happy. but I am constantly worring about leaking if I knew it would work and not leak I wouldnt need to dwell on it and could move forward

I called hollister and they are sending me out some starter kit. I have been using a bag and wore it to bed last night. still woke up covered

I am so, so sorry. This is incredibly difficult, and you are so articulate in putting words to your despair. Are you a writer? You write so well.

I'm not sure what you mean saying you should have listened to your gut. Do you feel like you were coerced into having surgery? Why did you decide to do it?

One thing is that FAP is no joke. There's a man in my support group who had most of his immediate family die because of it; on his deathbed his brother told him to go get a colonoscopy, and that's how he ended up with his ileo. No one chooses surgery because we want to be trapped in the house covered with poop -- we choose surgery because we want to live. It must be hard to feel in touch w/anything good about surgery when your quality of life has gotten so much worse after it (I have Crohn's, so it was very different for me -- even when I was having accidents etc, I still felt better than I did before surgery... I was so, so sick).

This really can get better, though. A lot of people have been through it and have worked it out.

Also, there is a way that surgery changes you forever, and there's a lot of grief that can go w/that.... and it's something that many people don't understand, where they want you to get up and go back to where you were before. You won't be the same ... but even though the event is traumatic, that doesn't mean all the long term changes will be bad.

On the other hand, are you sure that no one wants to see you cry? Because what you've got going on is stressful enough, just sounds so much more stressful to smile and pretend you're fine. What if it were one of your friends going through this, not you? Would you want that person to pretend to be fine, or would you want to be there for him/her? It doesn't sound like you're giving anyone an opportunity to be there for you..... I don't know the people in your life, and you do, so you have to call it. But is it possible that you're underestimating people?

Here are some ideas, take or leave: Is there a local ostomy association? They have visiting programs .... you could get someone who would understand to come see you. Also, maybe they can recommend a better ostomy nurse in your area. Maybe you could post here and ask if anyone around you has a recommendation; it sounds like there are other people from your area on the list. Just seems absolutely key to find a very persistent ostomy nurse who will help you figure this out.

Get some sure seals http://www.alpglobal.com/ (you can get samples from edgepark). These are clear plastic that goes around the wafer to hold it down. If you have a leak, they will hold it in long enough for you to get home to change, so you could go out some, even if you did leak.

Hang in. Thinking of you.

JerseyGal...I don't know your history. Is this temporary for you and getting a jpouch ultimately?

Regardless, you do need to figure out the leaking problem and unfortunately it is a trial and error FRUSTRATING process. It requires the skill of a good ostomy nurse to help assess but that isn't always easy and this forum with different opinions/suggestions might be what ultimately helps.

Of course with any leaking it is important to change the wafer ASAP and get your skin good and clean and try to stay ahead of getting a skin issue to contend with too.

The 1" belt should help insofar as supporting the wafer and holding it against your skin. Do you need a wafer that has some convexity to it possibly if you are using a flat wafer? Might an Eakin seal or Adapt ring around the stoma before applying the wafer help eliminate the leaking or give you longer wear time? The sure seals as mentioned will definitely help too. They are tricky to apply and not very easy to remove initially but will definitely give you the confidence you need to be able to go out for awhile and not be so nervous.

Maybe a very mild tranquilizer to take the edge off might be helpful. I can understand how you feel...this is life changing and every single one of us handle and cope with things differently. There is no "one size fits all" in the psyche department.

Please focus and concentrate on the fact you have an amazing supportive loving husband who is there for you. Many do not have that support and it is even harder for them.

I truly pray things will get easier for you and after experimenting with some different products you hit on one real soon that is the one for you....it took 4 different ones for my husband until he found what is currently working for him. The first 4-5 months we had our ups and downs and an occasional accident here and there. Fortunately he was home so it was easier to contend with. We know that someday that might not be the case but we can't obsess over it. After awhile when you get a routine down and find a system that works for you it truly does become easier.

Another suggestion...when you go to sleep at night maybe use a produce type bag to tuck in around the bag and wafer (using the 1" belt) and if there is a leak maybe the produce bag will contain most of it while you are having this leaking situation.

JerseyGirl

Get ahold of yourself. Stop feeling sorry for yourself. We have all been there.....usually before "THE" surgery. I worked within Ford Motor and s**t my pants as far from my desk as I could be. Called a co-worker on my cell and he rescued me with my vehicle. I made it and so will you. We have all been there and made it. You are next.

First you need to fix your problem with leakage. What are you doing when you change? What pouch do you wear? What powders, etc, do you use? Do you shower with or without your pouch? How big is your stoma? In or out? Tell us what you do and we will tell you what you need to try.

Dan