Ostomy: Adapting to life after colostomy, ileostomy or urostomy

Hi @loricarey, welcome to Connect. You’ll notice that I moved your message about colostomy bag to this discussion groups called:

- Ostomy: Adapting to life after colostomy, ileostomy or urostomy

I did this so that you can meet others talking about living with a colostomy. Simply click VIEW & REPLY in the email notification to read through the past messages and ask fellow members questions about how to prepare for a colostomy.

I go to Mayo on August 20 for evaluation for both a colostomy and urostomy since I have leakage between the colon and bladder. Anyone else have both? How long were you in the hospital? How often was follow ups needed? Have to go to Mayo or at local hospital since I am 300 miles from Mayo. Did you have options to the surgery? How soon did they want to operate when you decided to have the surgery? I have frequent U

Things do not sound as if you have had a great time with your GI track. All I know before I had my ostomy put in was I was throwing up everything I ate and drank. I went to the emergency room and was told I was constipated, I knew I wasn't, so I went home with a big jug of stuff and figured I'd try it. It didn't work so I went back again to the ER and asked if the doctor I saw was on duty. He was not, if he were I'd ask for someone else. I was admitted to the hospital, because the doctor I saw know I was not constipated, that was a Wednesday night. All day Thursday they ran test, got me ready for surgery first thing Friday morning. Most of what happened I don't remember I just know that I woke up in ICU with an ostomy and told it could be in for 6 months or forever. It is in forever and I have not thrown up since I left the hospital, that was 3 years ago.

I have had about a third of my GI track removed and getting use to caring for an ostomy, whether it is an ileostomy, a colostomy, or whatever you have, will take time to adjust to. I look at it as getting use to changing a babies poopy diaper. Poop is the food your body cannot use, don't be afraid of it just remember it once was food. You may have to find out what foods you can have and cannot have. You may be able to have everything you like and if you can't getting use to a new lifestyle can be interesting. If you have family and friends that are willing to work with you and your new lifestyle it can be very easy.

Once the doctors do the surgery they will have a better idea what is going on. That is what happened with me. Good luck.

mlmcg

Thanks for the information. I have a growth between my colon and bladder so they are attached and colon matter gets into the bladder and the UTI's occur. Then I have a high fever and vomit. Antibiotics have taken care of it but the interchange still has the potential. Last episode was 2 weeks ago with 4 days in the hospital. I get constipated from the antibiotics and the pain is terrible. 4 micrograms of morphine didn't touch the pain but it must have relaxed my bowels enough to blow it out and went home an hour later pain free. Afraid that sooner or later the antibiotics won't work and will get into an emergency situation. They want both bladder and lots of colon out. Both at same time? Still researching. Will know more in 10 days on options. I have lived with this for 2 years with about 4 bad infections. So far worth it not to have the surgery as long as I don't damage my kidneys from infections.

Terrible pain from constipation and antibiotics or surgery.....surgery or pain....pain or surgery. I know what I'd do but I'm not you. I would not recommend waiting until it becomes an emergency. Doctors do not like emergency surgeries they would rather plan on getting a good nights sleep and having something to eat before they do their surgeries. I'm aware of having both the bladder and colon removed, I only know it can be done and it has been done. That's all I know about it.

We can be thankful that doctors know about what is going on, fifty years ago you would be on the cutting edge and the doctors could only guess what to do. You really don't want to damage your kidneys because if you did you could have to have dialysis and than a transplant. Dialysis isn't that bad if you had to have it and neither is a transplant, it just takes time. Good luck.

mlmcg

Thank you, silly as it sounds I look forward to it so long as it works. It has ben sooo many years. Many misdiagnosis, it is gastroparesis along with others.

I really don't want to damage my kidneys so that is the driving force. Maybe just the colostomy and block off the hole in the fistual and keep the bladder intact? Will see. Thanks.

You are entirely welcome. May everything go as it should. If you need more information after your surgery(s) you know where to go. Good luck.

mlmcg

A couple of months ago I posted I was going to have an Indiana Cystoplasy Augmentation. It was performed at Cleveland Clinic July 31st. It was a 4.5 hour surgery and my Bladder was expanded from GI Tract and a conduit from my belly button to the bladder. I feel much stronger now and still have two catheters which will be removed on Wednesday. My strength is coming back as I recuperate. I can't say enough great things about the treatment I received at Cleveland Clinic and the surgeon who performed surgery. I should be able to lead a very normal life and resume my activities. I will have to learn how to catherize and hope no problems arise like leaking. While I am not totally out of the woods I am upbeat.

Learning new things takes time, once you have mastered the entire process you will wonder why it took so long. Recovering from surgery takes time too, getting out of bed and walking is one of the best things you can do. You will never be the person you were, now you can be better, a little different but better. Good luck.

mlmcg