1.5 Months Post-Ileostomy: A Bittersweet Transition

It has been about 1 1/2 months since my ileostomy reversal. Being without my red friend Frank was a change I had longed for. I have to say though, even though "Frank" saved my life, I do not feel much appreciation for him. I knew that having the j-pouch surgery was no cure for my disease; I just hoped for less pain, maybe a life where if I had to go to the bathroom, I could wait a minute or even five to find one. I got what I wanted, but now after 5 years of not having any sort of normalcy, I find I crave it more than ever and notice my shortcomings and how much I've missed that much more. Having an ileostomy was like a personal hell for me, even if I tried to bear it with grace and humor, the fact remained that I worried over my ostomy more than I ever did of my pan colitis. Of course, it might have been harder for me because I was unable to find a suitable ostomy bag until 3 days before final surgery—turns out I was convex. Having an ileostomy was the hardest part physically, but afterward, I view it as a battle barely won and see a war whose end will not be over any time soon. Recovery is hard physically, but mentally, it is so much harder for me. I don't know if it's harder for me as a young woman to see three giant scars on my abdomen every day than it would be for a man, but all the same, it is more difficult than I imagined coming to terms with a permanent scar that cocoa butter can't fade away. I am relieved not to deal with the adhesive itching on my stomach all day, but the skin was definitely damaged. I don't know how you ostomates do it, but because you go through life with smiles on your faces and good humor, even if it's a front or all pretend, I applaud you.

I suppose I no longer belong on ostomates, and I suppose instead of being so morbidly morose I should be singing praises and hallelujahs about not having an ostomy, but I find it hard to pretend it's okay after 5 years of pretending this. For me, I had about 3 months remission from my disease, including my time with the ostomy. Now I have pouchitis, and the first thing I think is, "it's never over." I feel a little gypped, personally. My doctors assured me life would be better and almost worry/pain-free. Now I'm thinking...they say that to make you feel better about anything they have to do. The thing is, doctors don't really know how hard it is to recover from surgery, or understand that even if the patient knows it's necessary to save their life, having to depend on a little plastic bag for a semblance of normalcy and having to stare at a piece of intestine sticking out of their flesh is a traumatizing ordeal. They smile understandingly and say, "Yes, I know it's hard, recovery takes a while, you'll get used to it" and whatnot... and I realize... they have no fucking idea as to what exactly their patients are going through, even if they're the surgeon.

Now my course of action is to, as always, carry on, and try to get into a state of good health. I have about 3 boxes of ostomy supplies I'm donating to the ostomy/wound care nurses so that new ostomates can benefit from a little help like I did. I looked into becoming an ostomy nurse before reversal, but I realize that it would be too upsetting to have to downplay the struggling of a patient with the exact symptoms or problems I had. I'm too honest. I would most likely be fired for not having a good attitude. Instead, I will stick to my medical assisting career, and perhaps work in the GI dept so that if someone is going through the same troubles I had, I can still offer them hope and a friendly word of advice... like the fact that there is an ostomy nurse literally across the street that no one tells you about.

I just want to let you on ostomates know that you are all terrific, outstanding people, and you all deserve medals of bravery, in my opinion. Even if those are rarely dispensed outside of military (I think), each and every one of you with an ostomy is like a soldier on a battlefield. You're in a different territory than everyone else, but you hold each other up and when need be, hold your own. You fight every day and night, and hold out for another day with hope and as always, a touch of humor, as well as boundless strength. Not many understand what you've been through, what you're going through, and what you will continue to endure with such dignity. I really do applaud you all, and hope that those who can have the reversal, do, and have a better time because of it. I do admit that even in a new flare, I am not in so much pain... I'm just a bit tired from fighting all the time. It's a bit like being sent from the battlefront and instead guarding the barricade indefinitely. It's better, but now that I have a moment to rest, it has all caught up with me.

Good luck and good wishes to you all!

Hi Simberry, Sounds as if things are moving right along for you except for the pouchitis. I had to do a search to learn of what it is, and yes it seems to be never over, but I don't know anyone who doesn't or hasn't had a life without some type of physical or mental issue. Thank you for the wonderful things you've said about ostomates, but we are just folks trying to deal with whatever life throws our way like everyone else. I hope your journey thru this world becomes a blessing to you.

Dear Simi, sounds like things are moving right along, not just the way it's supposed to be, full of pain, and dealing with issues. And yes, the doctors will say whatever they need to say, as I too was told the J-pouch would be great. As they say in England (I'm American though), pure poppycock. My thoughts are they are full of shit. Period. I now live a totally med-free, doctor visit-free, great physical life with a permanent ostomy. No more worries. Period. When you get tired of the doctor visits concerning your pouchitis and tired of all the bullshit the doctors will tell you that it will get better, you need to know that in truth there are very few happy J-pouchers. Yes, they tend to live with their J-pouch, but there are constant issues in their lives. You are a beautiful young lady and when you are ready, I am here to tell you that if you go back to being an ostomate, life will be good again for you and most likely better than the J-pouch issues you are already dealing with so soon after getting it. Sorry to be a Debbie Downer, but I hear your struggles with the illness and now the J-pouch, and it has struck a chord with me. I have lived in your shoes, and I couldn't be any happier. I am a permanent ostomate, and it has given me a pain-free life in total.

Hiya Simi! :) I'm glad that things seem to have improved once the ostomy was gone. That doesn't mean you're never welcome here though. I've been sick all my life and have been an ostomate going on... 16 years this year. To me, that was my saving grace, and for a while, it felt like a security blanket, lol. My mom was more afraid of the whole thing than I was... Nowadays, I don't give it much thought. Okay, I do at times, because I have to, but it's a part of me and it keeps me alive, so it works for me. At any rate, I really do hope that you feel better and things work out for you no matter what the case may be. You're always welcome to come and chat on here with us. I know we don't mind. :) Take care and God bless! (hugs) :)

Hello Simiberry, I just wanted to echo what others have said with regard to hoping that your future is better than your description of the past. Best wishes Bill

Words of Encouragement from Ostomy Advocates I Hollister