Considering Reversal - Weighing Risks & Praying for Guidance

Hello all, life is like a highway at times, there are accidents, detours, mountains, and hills to climb.

It's been about two years that me and my GI doctor have been discussing a reversal. I saw a surgeon a year ago who said he could do it. Sure, he can, but will it work?

The GI doc was the one standing in the way initially, now he's willing to refer me for surgery. Well, now the ball is in my court and the GI doc has explained the risks.

The GI doctor ended the appointment with "pray, think about it, and discuss with your family."

Now listen, since I've been a member of this group, I've read many success stories and some not. I personally wouldn't ask another, "What should I do?" since I have to wear these shoes.

As I think back, the road has not been easy, there are still bumps in the road. Yet, I learned how to manage and live with my colostomy. I actually didn't think once given the green light I would feel this way.

I'm not willing to risk going from a colostomy to an ileostomy. Nor am I saying one is better than the other, but I've learned to walk in these shoes. In all honesty, I'm afraid, but my prayers are that whatever I decide is the right decision.

For those of you who are preparing for reversals, I wish you great success.

Take care,

Angelicamarie

Hello Angelicamarie.

Thanks for your post and sharing your deliberations on what can be a difficult decision to make. I've been there and considered that, so understand your logic and your fears in this regard. Personally, I've opted to stick with the colostomy, but I can well understand the temptation to try for a reversal.  My decision was largely based on the concept of mistrust for the medical argument for reversal in my case. Before the stoma, I had a prolapsed anus, which they could not find a solution to. In my opinion, simply reconnecting would not resolve that problem and I think I would be back to where I was before.  Everyone has different reasons for their stomas and we need to realistically weigh up the pros and cons of potential reversals before we go down that route. 

I hope that you can have a successful reversal and that whatever decision you make will turn out to be the right one for you.

Best wishes

Bill  

Hi, Angelicamarie,

Wow... talk about being careful about what you wish for, eh? There is something comforting (in a sick sort of way) about medically not being able to be reversed (for whatever reason), as there's no decision to be made. Having grown accustomed to (and accepting of) a lifestyle that involves a colostomy and then being given the option of reversal requires serious thought, as apparently you're doing. It's definitely not as simple a decision as we tend to kid ourselves that it is. I don't know your history, but I've discussed my situation with my Docs many times. Having had severe fistulizing Crohn's and having most of my small bowel and 1/3 of my colon removed, it's hard to believe but my Docs would allow me to be reconnected. Then I started asking about Crohn's recurrence rates for folks in my situation and it suddenly got quiet in the room. After lots of anecdotal evidence about the recurrence rate being around 60, I finally told them to show me the data, not tell me what they "think" the rate is. The data was worse than what they thought, so having been disease-free since my ostomy 5+ years ago, I'm staying put. But if new data came in, or a new med was found to reduce that recurrence rate, I'd have a really, really tough decision to make. Giving up what you have for something that might be better, or might end up worse, is one tough call.

You obviously have a good head on your shoulders and will make the right decision for you, but it sure gives the rest of us something to think about, if we aren't thinking about it all the time already. Best wishes to you.

Regards,

Bob

Hi Angelicamarie, sounds like a very big decision you have to make and I wish you all the best. Just weigh all the pros and cons, if the GI Dr was holding back what made him change his mind? Are you saying there is a chance you would be going from a colostomy to an ileostomy if the reversal did not work? I don't know what I would do if I had that choice but I was told mine could not be reconnected. Best wishes, keep us updated.

Hey Angel, Bob makes an excellent point; decisions, decisions, ugh. Even trying to define what we mean by the “right” decision can be a chore. If we’re better off after employing our decision then it must have been right. Now we need to define “better off”. Maybe we should start with questioning how bad our situation is now compared to how much better it can be if everything goes well in some reasonable time after the procedure. Then, what are the odds of experiencing no complications and how unpleasant might those complications be. Are you a gambler and, if so, will you be OK if it doesn’t work out? Referencing Bob, again, regardless of what hat he’s wearing, he notes your wisdom and knows you’ll make the right decision.
My advice is to take all the time you need, get all the answers to all the questions from the folks you trust then let us know what and how you decided. Prayer might be a good addition to this task.
I’m in for the prayer part,
Mike

How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister

Angel,

I wish you the ability to make the right decision. Being in my situation, it is not possible so there is no hope of returning to what once was for me and those that are permanent ostomates. I never went through Crohn's or IBS or anything like that. Cancer takes care of things permanently sometimes. Had I had a choice, who knows. The data should speak clearly to success rates and what is defined as successful.

Good luck, girl! New technology and new drugs are put on the market every day for us, but just choosing what will work is tough!

Puppyluv

Angel.....Years and years of treatment for UC determined my ileostomy outcome...they removed all of my large bowel and used a portion of my small intestine to make a J Pouch which was to eventually lead to a reversal...I had a bag for 6 months after which they did the reversal ...it went well for a couple of years and then it was a nightmare...3 years after reversal I had sepsis and was critically ill...the new J Pouch was full of colitis again...I spent a month in the hospital after having everything removed including my rectum and stoma was moved to the left side......I know there are a lot of successful reversals that have been done but I think colostomy reversals from what I have read here are quite successful so you may be ok....I wish you well....think long and hard about your decision...I would hate to see you end up with an ileostomy therefore losing all control.....take care

Ange

Hi guys,

Your comments were received and appreciated. After having my colostomy in 2015, all I could think about was being normal again.

As I stated above, never would I even think my thoughts would change. The way that I am has become normal for me.

Yes, there's much to consider. I had other health issues prior to my colostomy. In 2017, I had a cyst removed and had a reaction to meds that were given to put me under.

Let's face it, if I opted for surgery, I'll need assistance to recover. My parents are elders who just thinking about me going under the knife are frightened. My brother died in 2016.

Of course, prayer for me is a part of my life. The thought of going through surgery and waking with an ostomy is unimaginable.

In all sincerity, I thank each one of you for sharing and commenting.

Sincerely,

Angelicamarie

Sincerely, I hope that you will reach the decision that will be right for you in the long run. Best wishes.

Hi again Angel.  You just verified your wisdom in stating that the way you are IS normal for you.  That's profound.

Thanks for sharing.

Mike

Will you tell me about the fistula being severe? I had them and spent all summer undergoing hyperbaric treatment with no luck. How were yours, and do they return?