Successful Reversal and Hysterectomy: My Journey

Hi, I'm new here. I lurked a bit when I had my colostomy. I wanted to share my experience in case it helps others, especially women. I started getting sick in 09/2022. I went to the doctor so many times, had so many scans, but the pain was always attributed to my gynecological issues (fibroids, cysts, etc.). During this time, I had a lot of trouble going poo, so probably strained way too much. Anyway, in 02/2023 went to the ER and found out I had diverticulitis. Was admitted for two nights and given IV antibiotics, but returned a few days after discharge to find out I perforated. Honestly I don't think I should have been discharged, my belly was huge and I looked 7 months pregnant when I left. I had an emergency laparotomy, was left in ICU for 2 days with a wound vac over my open belly, then went back to the OR and got my colostomy. It was a very tough recovery, but eventually the stoma was working and I was up and about. The worse thing was the big incision was hard to deal with and I ended up with a seroma and a little hole in the incision that had to be packed. Around 3 months post-op, I developed a parastomal hernia and my gynecological issues came back with a vengeance. The parastomal hernia did not hurt, was just heavy but the gynecological issues were causing me tons of pain. I saw gynecologists, but no one would perform a hysterectomy on someone with a stoma. I saw colorectal surgeons, who said they would reverse me...but would not address the gynecological issues. If I did that, I would wake up and be reversed...yet still be in pain, so it seemed pointless. I felt like I was stuck between a rock and a hard place. My gastro doc referred me to a surgeon an hour away, and I'm so grateful he did. When I told her how I wanted a reversal but also needed a hysterectomy, her exact words were "no problem!" I had a combination surgery 4 months to the day of getting my colostomy. The gynecologist went first and did the hysterectomy, then the colorectal surgeon took over and did the reversal. Reading the Op notes, one thing they did together...it turns out I had pretty back rectovaginal endometriosis, and my vagina and rectum were stuck together on the inside....I assume that's probably why I had so much trouble going poo. I had to be cut open again (adhesions) with an abdominal incision, but this time...it was easy! I was up out of bed the day of surgery & discharged after 3 nights. I had a watery poo in the hospital. The first week home I poo'ed 6 or 7 small poos a day, but then had constipation for a week or two. I drank a little prune juice when this happened and it solved it. By the time I was 4 weeks post op, the bowels were working fine...better then they had in over a year. I was even driving my car on post op day 5. Granted I just drove and went through the drive-thru, but driving nonetheless! Got my staples out day 14, and was in the grocery store shopping on day 15. The reason I wanted to share this is because if you have a colostomy and need a hysterectomy and are being told you can't have a hysterectomy, there are surgeons out there who will do it. You may have to travel a bit, but they are out there. There are also hospitals that do double surgeries. If I had stayed where I was, I would have been reversed...but the issues causing me pain would have stayed inside me. I probably wouldn't have poo'ed any better (due to the endometriosis) either. Then after 5 or 6 months of being in pain, then I would have had a hysterectomy. Seems crazy to go through all that! By those surgeons doing the double surgery, they saved me a surgery and lots of pain. I won't post their names (don't feel I should without their consent), but if you are in this situation, message me and I'll give you their names so you can get an appointment. When I would search for anyone who had an experience of a reversal and hysterectomy at the same time, I couldn't find anything, so I hope this posts help somebody. PS I'm now 3.5 months post reversal/hysterectomy and I feel like my old self again. The bowels work really good. Every so often, I might have slight constipation, but I just drink a small glass of prune juice before bed and I will poo in the morning. They really gave me my life back.

So glad that you're doing so well!

Thank you for the update. I am happy that you're back to feeling good.

Kudos for posting this! No doubt it will help someone and it is kind of you to report in with details of your illnesses and journey. It gives hope to those who may feel hopeless in terms of ever feeling normal again. You have no doubt been through a lot and came through those tough times - sharing that gives others a boost. Thanks and best wishes for a happy, healthy future! JB

Thanks for sharing your story. It had to be extremely frustrating knowing the procedures you needed, yet discovering no surgeons willing to do it. Fortunately, you didn't take no for an answer, and now have your life back.

Through my own medical issues over many years, I discovered.... "I" have to be my own advocate. Your story is a tale of persistence.

My guess on why many doctors avoid complicated surgeries..... Lawyers. As I drive home from work, nearly every billboard advertises lawyers promising big settlements and how they will "fight for you, get you justice." For many prescribed drugs, there are commercials on TV from law firms eager to sue.

After quite a battle, I had exploratory surgery last November. The first surgeon referred to me in the hospital, (very experienced), declined to operate on me. He said he was too busy. I was very close to dying... and he's too busy?! A second surgeon stopped by a day later, and said he was all booked up too. So... what the hell was I to do? Thinking I was toast... made out a list of final instructions for my wife... how to claim life insurance, change our home's title, etc. But my persistent, amazing infection doctor persuaded surgeon #2 to operate. She saved me.

Again, wonderful you got your life back. Even with a permanent colostomy, I feel the same way.

 

The thought of surgeons looking at you and telling you no, I won't help you, that blows my mind!

The next day after surgery, the surgeon came to check on me. I had horrible, constant hiccups and could hardly talk.

He looked at me, shook his head, and left. Instead of a 3-hour procedure, my surgery turned into a 7-hour ordeal, finishing at 1:00 am.

That's true, some surgeons are more daring than others. Glad you found one of the daring ones. Good advice here for someone who may find themselves in a similar position as yours. All's well that ends well. Best wishes.

 @ reversedinflorida.

welcome.

femmecote , also a new member, is asking abt this procedure. she just posted her question. not sure u saw it.

i hope u both reach out to each other for advice.

its all good. thanks.