Need guidance on ostomy due to worsening health conditions

Die. I have Crohn's disease for 44 years and have been on and off prednisone. I have COPD, diabetes, heart trouble, skin cancer, etc. The doctors don't know what to do with me anymore. Can anyone walk me through the steps of an ostomy? I had one subtotal colectomy which was supposed to buy me 2-3 years of good health. The surgery made me worse. I know it's a lot to ask and I don't know where to start, but I guess I really need to read up on it as my disease is getting worse and the drugs are no longer working. Morphine, prednisone, and Humira.

So if anyone feels ambitious, please help me!!

Wagsam, each case is its own journey, but I will share some info that has come my way these last few months. I have found a nationally board certified Chinese Acupuncturist and Herbal Doctor (also MD in China) who treats people with UC (not sure about Crohn's) and keeps them from surgery. I am seeing her for strengthening my immune system and it seems to be helping. It would have been nice to have known her before my ostomy....... Anyway, it is key to find one that also uses the Chinese herbs.. Worth a shot.

All the best to you!

Hi, Wagsam,

Like Vikinga said, each journey is different. For me, I had a few years of typical Crohn's symptoms including abdominal pain, couldn't hold food down, diarrhea, fistulae etc. I was on all kinds of meds including prednisone (which is really bad for you ... bones, for one).

When the doctors went in (surgery), they immediately saw the dying part of my intestine and removed it. They put in an ostomy.

The payback was immediate. My symptoms were a lot better. I took to the bag pretty well. I just had to learn my new-normal.

Through the years, I have had a few repeat performances of my Crohn's/surgeries. But the surgeries have worked.

I hear that some of the meds they use today are better perhaps if I took them in the first place, I would have more intestine. You always want to keep as much intestine as you can.

Since I have been an ostomate, I have run marathons, had hanky-panky, swum oceans etc. etc.. I see you have had a lot of health problems so I imagine this one is no worse than anything else.

Anyway, I am not exactly sure what you were asking for when you wanted the process of an ostomy - i.e, how it gets put in? lifestyle with one? But I figured I'd at least make a connection. If you are more specific with your question, I bet you will get more responses. The people on this forum are great. They represent a lot of experience, and ideas. They approach things in a multitude of different ways (i.e., eastern vs western medicine). But you will not be short of input ... and friends here.

Good luck,

ahappygirl

Hello and welcome to the site!!

If you want to "see" there is a lot of wonderful ostomates on YouTube. Just type in ostomy. And it's not as bad as it may look. We are all living proof as well.

Thank you "a Happy Girl" for your reply. I see that even though you had an ostomy, the Crohn's came back. My first operation and only one, I was promised at least 2 years of freedom. My diabetes would go away, no prednisone, etc. I found out later from the other surgeon that he lied to me and never should have said those things. My disease got worse and the diarrhea was unbearable until I was put on opiates which helped.

I guess I am not ready to have my rectum removed. My doctor now got so scared with my disease (she's only practicing 14 years) that she called in another doctor for my case. He is from the old school which I know since I have had it for 44 years. He tried admonishing me for being on prednisone and morphine. Like I put myself on it on my own. He was pushing me for a colostomy but he did give me some medicine that is helping and I will be on a new biologic, Vedolizumab, if I can get public assistance as the co-pay is $1,000 per month infusion.

I will try everything until I get to the point of saying, I need a colostomy. I didn't go out of my apartment for 1 month. He put me on a drug that helped form a stool. I was leaking feces from my rectum and couldn't stop. Finally, he helped me.

He is a crazy doctor but I heard he is a genius. So I will try and follow his method.

Tell me, how did you feel when you woke up and the bag was attached? I have seen stomas and bags but I don't know how I will be.

Thank you once again for answering me.

Wagsam

My Ostomy Journey: Keyla | Hollister

Hello WAGSAM,

I was driving home to Texas last Sept. 2013 and started to bleed from my rectum. Got home, went to ER. Had 1 operation on Oct. 1st. Woke up okay. Then started to bleed internally. Doctors ran tests: MRI, CAT scan, and found out the operation did not work on the colon, it broke open.

Then they did another operation and then I woke up with the bag. Well, after 8 weeks in the hospital, I went home. My sister stayed with me all that time and at home. The first few months, I hated it, but as they say, "Better in a bag, than in a box". Now, after all this time, I am getting around and doing good.

This may not answer your problem, but the bag is not the end of life. People do go on.

Take care,

Diceman

Skip

An ostomy is not so bad, once you have the right appliances. I had one 20 years ago because of a perforated colon, it was reversed 6 months later, then 7 years ago, I went on a long fiber diet while in Italy and got stopped up, went to emergency and woke up with an ostomy that was to be temporary.

When I got home I went to see my surgeon who suggested to keep it because I had 3 ventral hernia repair and it was not advisable to reverse as the ostomy was on the right side of my upper belly.

So I have had this ostomy for a long time but now it is herniated. I went to a colorectal surgeon who suggested to have it reversed as he said he could do it.

So I will give it a shot.... I am 71 years old. I think having an ostomy is not that bad if you have all the proper appliances. AND A PLUS YOU DON'T NEED TO RUSH TO A BATHROOM IN DIRE NEED..:) Look at the positive side.