LSH: Scared about waking up with a colostomy bag

In my pre-op appointment my doctor said there is a very small chance I might wake up with a colostomy bag because of my scars from previous surgeries and possible endometriosis. I'm so scared of this. My doctor said it's very unlikely but it's his responsibility to tell me. How common is it for women to have a colostomy bag after hysterectomy? It is not permanent but I'm really scare of this.

Wow, that does sound scary.....((hugs))...at least it sounds like your surgeon understands your situation well and has experience dealing with it.

I hope someone else with more knowledge can answer your concerns

Tigs

Hi Lou

I have not heard it happen often. I have spent a lot of time reading in post op and if it was a regular occurrence, I'm sure it would have had lots of posts.

Your Dr is just doing his job right when he informs you of the risks of surgery. You could ask him how many times this has happened in his experience.

Remember he said it is a "small chance" and "unlikely".

Wishing you well for your surgery and a speedy recovery.

Hugs,
Suzanne

Through all of my research, I have never come accross this happening. I'm sure it does once in a blue moon but it doesn't seem very common. Ask your Dr. how often he has seen this happen.

The one thing that I found with my Dr. is that he felt the need to tell me every possible bad thing that could happen no matter how small. Everytime he would talk I would say "I wish you wouldn't have told me that" and he would tell me that his job is to inform me of ALL possible complications. This is the first Dr. that I have ever had be so over the top honest with me. While some of the information scared me to death, it reassured me that I had chosen a great surgeon.

Just to let you know, I had multiple previous surgeries (Lap for endo back in 96, LEEP twice on cervix, LAP for ovary and cyst removal with hysterscope back in January and TLH on 4/28/10 for endo and adeno). I had no complications, everything went great!!! The only thing that went even slightly wrong was that the surgery was expected to take 1 1/2 hours and it took 4 and I ended up with a UTI. All the worrying that I had done wasn't needed. If the possibility of this bag is going to change your mind about the surgery then think twice but if not, try your best not to worry about the things you can't control. Best of luck to you, I'm sure everything will go great!

It is very, very uncommon, but your doctor has an obligation to tell you that it's a possibility, however remote. The possibility exists in the event that the surgery is so difficult that your bowel is affected, which is not the usual case at all. I can think of only a couple of times women have posted here about it happening to them.

I had most of my colon removed a year after my hysterectomy. Beforehand, the surgeon warned me that there was a chance I would need a colostomy, that would then be reversed (if all went well) in six months. It didn't happen, but I was concerned about it.

One thing he did to minimize the likelihood of that happening was to have me do a two day bowel prep before the surgery... it was very dehydrating but he had me arrive at the hospital early and get IV fluids. The danger of a colostomy increases if there is stool in the bowel.

So, if your surgeon really thinks the surgery is difficult enough that there's a chance of bowel involvement, you might *ask* about doing a really thorough bowel prep so you are "squeaky clean" before the surgery. Be sure, though, to follow your surgeon's instructions to the letter, whatever they are, and not take matters into your own hands thinking you're doing yourself a favor, because you're not. It can be dangerous if you do something other than what your doctor tells you to do. In my case, for example, if I'd have done that two day prep and not told my doctor, I'd have been too dehydrated to safely have surgery and he would not have known to order the fluids for me before surgery, and they'd have had to cancel at the last minute.

Good luck with your surgery, and try not to worry too much about the what-ifs. They are out there, for sure, but hopefully you will be one of the many who escape such complications.

s,
-Linda

I'm so glad someone else posted about this: my doctor told me about all the possible risks during my pre-op appointment on Friday. She said the same thing: that it's very, very unlikely/rare, but because I had fibroids surgically removed about a decade ago, if a regrowth were to "stick" to my bowel, then the colostomy bag would be the worst-case scenario. I really don't think that's going to happen considering I'm getting this surgery to improve my quality of life and the "bag" would be far worse than what I've been dealing with . . .In any case, I was told to stick to a clear liquid diet for 48 hours prior: ginger ale, black coffee, tea, and vegetable broth is all I've had for two days (all day yesterday and all day today--ugh). Surgery is tomorrow morning. I have confidence that everything will be fine! A good surgeon will disclose all possible risks, even if unlikely. Good luck to us all!!

Thank you so much to all of you for easing my mind. I was calm until I heard this at pre-op. My doctor said nobody wants to hear it but he has to tell me the risks. This is my biggest fear and I want to cry everytime I think about it. My surgery is next week and these "what-ifs" are creeping up on me.

Thanks again for everything. You ladies are awesome!

lou- I just wanted to wish you the very best recovery after your surgery (upcoming). I am in a very similar situation- single- 35- and realizing that I just can't live like this anymore and that my health is the most important thing, afterall it's all we have.

Hugs and blessings.

Thanks segar. It's a very tough decision and I wish you the very best in your decision making as well. Good luck!

I had to have an ileostomy (like a colostomy, but higher and the stoma is part of the small intestine) last year due to a severe case of pancreatitis. It was done to allow me to eat while still resting the pancreas and because I had to have half of my colon removed as the pancreas juices destroyed part of the colon and the doctor was worried that I would develop a colon stricture. In fact, I recently found out I do have one, which is essentially scar tissue which blocks the colon. The ileostomy was always supposed to be temporary. I have had it almost a year and hate it, but you do get somewhat used to it. Now, on top of a year of hell (5 months in the hospital, 6 operations) I recently found out I have endometrial cancer and am scheduled for a hysterectomy on June 30. I figured since I was going to have the surgery, the surgeon could go ahead and reverse the ileostomy. He had wanted to wait until at least the fall to give me more time to heal and get healthy, but now we don't have a choice. He told me he won't know if he can reverse it until he gets in and sees what the remaining colon looks like. He is also going to try to fix the stricture. Getting rid of the ileostomy would be a nice consolation prize. I also won't know what stage the cancer is until I have the surgery. Because of my past medical problems, I will be in the hospital 1-2 weeks.