Decision Making Time

Hi everyone! I feel welcome in this new group. I am in the decision-making process of getting an ostomy from both childbirth trauma and IBS-C. I have been offered an ostomy several times throughout my lifetime, but I always thought I could handle it. Now it is getting more difficult. After two failed sacral nerve stimulators, many bladder infections, now interstitial cystitis, and much more, I am to the point where an ostomy just makes sense. Is anybody else out there with similar problems who got an ostomy? Was it worth it? I would love some feedback. Thanks!

Hi! I have suffered with IBS and diverticulitis for more years than I'd like to count. Ostomy surgery is a major decision for sure, and I fought it for many years. I have tried every medication, been in the hospital with antibiotic IVs and pain meds, and until I had no choice because, surprise, my colon perforated and sepsis was all over, I had no choice.

Your question is not easy to answer, at least not for me. I had several conversations with my GI doctor, and he said eventually I would need one; my colon was really a mess. But I still resisted because I was so afraid of what would happen if I had an ostomy. And I also loathe hospitals! But my choice was my choice, and I had to deal with the situation I had. If I had known someone who had successful surgery, or even knew of this group, maybe I would have made a different decision the first time they discussed that they were running out of medications to try. But to be honest, I'm not sure.

I think understanding what you will be getting into beforehand is a wise decision. Most doctors know very little about what it is like to live with an ostomy; they just know the mechanics of the insides. Asking questions here is great, and I'd be happy to talk if you'd like.

Really a non-answer, but as with so many things related to the ostomy life, the answer is person-specific.

Take care!

I don't know much about your conditions, but if an ostomy will improve your overall health/life, why would a person not want one?

Hello Decision maker.
Thank you for inviting us to contribute to your post. However, your statement:  "I am to the point where an ostomy just makes sense." seems to sum it up nicely.
 Many years ago I recall being in a similar situation after prevarication on the decision for far too long. Eventually I came to the same conclusion and opted for a stoma.
I cannot say that there have not been a few problems along the way but overall my life has been so much more manageable (& pleasant) with a stoma.
I agree with Nini4 about these things being very personal choices and we can only share what we know by experience. 
Perhaps you could view the decision as simply going for the 'sensible' option?
I am looking forward to hearing from you in the future, no matter what the decision or the outcomes.

Best wishes

Bill

Hi Decision maker - for one, I think you are absolutely doing the right thing by posting and requesting any information/suggestions on this site. I hope urostomy folks will respond to your requests for input.
Since I have an ileostomy, I am ill-equipped to share any like issues you are having.
The only thing I can share is an opinion on how any decision is made. Gather as much information as possible about the surgery and what you can expect afterward…make sure you are aware of any downsides that would be a game changer for you and don't let surgeons cavalierly discuss this! …it is very important and you should feel a great respect and comfort level with your surgeon/s who will perform the surgery if you decide to proceed. Best wishes and decision making 🫶🏼 keep us posted. jb

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

Thank you for replying to me. Since you had IBS, I think you can understand and relate to what I am going through. How do you share personal information on this forum so we can communicate? I'm brand new to this forum, and I am very thankful for all the support already! Thank you!

Thank you for the encouraging words. My bladder has suffered, but it is my bowels that have caused havoc! I am probably heading toward an ileostomy.

Thank you for the encouraging words. My bladder has suffered, but it is my bowels that have caused havoc! I am probably heading toward an ileostomy.

Thank you for the encouraging words. My bladder has suffered, but it is my bowels that have caused havoc! I am probably heading toward an ileostomy.

Thank you for the encouraging words. My bladder has suffered, but it is my bowels that have caused havoc! I am probably heading toward an ileostomy.

Thanks, Alex, for writing back. I guess it's all the unknowns—I have had abdominal surgery before and have been told I have a lot of adhesions. Will my whole large intestine be removed so it doesn't spasm anymore? On and on and on.

Thanks, Alex, for writing back. I guess it's all the unknowns—I have had abdominal surgery before and have been told I have a lot of adhesions. Will my whole large intestine be removed so it doesn't spasm anymore? On and on and on.

Everything we choose to do is an unknown. If it were me, I'd ask my surgeon, doctor, and specialist about what they've seen with other patients with this choice to make. For me, if the bag takes away the pain and other issues, I'd tell them to slap a bag on as fast as possible. If they say that with this medication or this procedure we have a good chance of getting rid of your issues, I'd go that route. You can always go the ostomy route.

I had emergency ileostomy surgery 55 years ago due to Crohn's disease. I don't remember what life is like without wearing a pouch. It saved my life, and I am very grateful to have an ileostomy and to lead a normal life. Hope this helps. I also gave birth while I had the ostomy with no problems. Marlene