Facing My Ileostomy Reversal: A Journey of Resilience

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JVM261
Jun 30, 2024 7:47 pm

 

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Hi everyone:

As some of you know, I had emergency surgery due to Cdiff in September. At first, I thought I had no large colon left. Then I thought I had just enough for a reconnection as I was told by one of the doctors before I left the hospital. Then I found out through a flex sig that I have 18 cm plus. I told them to stop because I was in pain, but I was happy to hear that I have that much.

In the beginning, I was very depressed and really wondered if my life could keep going like this. I was already born disabled, then acquired more health issues in life. But I always had good bowels. Even with the Cdiff, I had constipation and I thought they were overreacting when they said I needed to go to emergency surgery, that I needed a bag. Needless to say, they did not overreact; I woke up with tubes everywhere. I was on dialysis for three days. My kidneys started working again, but I lost my desire to eat. I went from 142 to 89 pounds. I am back to myself more or less again.

In rehab, everything was much worse because they were not used to someone coming in already born disabled. I had problems with them allowing my power chair there and people telling me to move my body how I couldn't. The food there was bad. I ended up having a friend bring outside food and got stronger. Plus, a machine in rehab called a NuStep got me strong again. It's a sit-down cross trainer, and I highly recommend that for anybody that can get on one after surgery. I came home around Thanksgiving. I believe I started communicating in this group around that time.

I've taken a break over the last few months just trying to do more research but at the same time, pulling back a little bit for my own sanity. In the end, what I've had to come to terms with is that each of us is so different I could research forever but I won't know what will happen to me until it happens. But this group has given me a lot of courage and support from just reading people's posts. 

I want to thank in particular Iggy, Just Breathe, Mermaid, Bob, and last but not least, Warrior. You guys make life with the bag more understandable and more of a relatable, accepting experience for me from when I first got on here and I want to say a big thank you. I also want to say thank you in particular to Crappy Colon, Colin Sans Colon, and Caz…to all you guys with no colon and a direct connection—it's because of you guys and the success that you've had that I feel okay to go through this reconnection and I thank you deeply also.

If it doesn't work, it doesn't, but I had to try. I am shocked at how many people don't know about ileostomy care, but know about colostomy care even in hospital settings. Even with colostomy care, the education seems to be not great in many rehab settings. To elaborate on that, I was given a closed bag in rehab and then cut the hole too big and they changed the bag about three times a day after two weeks and got a very bad acid burn. Closed bags are usually for end colostomy people. I wasn't given enough education in the hospital before rehab on my bag. This caused needless pain.

If I get through tomorrow, well, I hope to use this experience to help educate others about ostomate care. Please send good thoughts my way tomorrow morning. I will do my best to update people here. Big hugs to all.

Cheekymonkey111
Jun 30, 2024 8:26 pm

Good luck

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Justbreathe
Jun 30, 2024 8:34 pm

 

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Positive vibes are being sent your way tonight and all day tomorrow for a complete and successful reversal. It sounds as though you have been a fighter from the start - stay strong and re-branch like the tree in this picture! Hugs to you, and keep us posted when you can. - JB

warrior
Jun 30, 2024 10:53 pm

You got this, kiddo. Give them hell if they give you any problems.

Report back when you can. Just take your time. We are here.

Blessings.

Morning glory
Jun 30, 2024 11:14 pm

Prayers for you. Please update us when you can.

 
Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister
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CrappyColon
Jul 01, 2024 12:52 am

You're such a brave woman, your inner strength and perseverance through life are something we can all learn from. Put me on speed dial; I'll give whoever I need to a talking to if they're not taking the best care of you. I'll be in touch. 💜

Megs
Jul 01, 2024 1:46 am
Reply to CrappyColon

Good luck for tomorrow. You've got this. ❤❤❤🤗

Kas
Jul 01, 2024 2:14 am

Keeping you in my prayers for a successful surgery and rapid recovery!

7dragonflies.hm
Jul 01, 2024 2:36 am

Wow. You are incredible. You got this. I'll be praying for you and cheering when you report back to us! Tight hugs to you! ❤️

IGGIE
Jul 01, 2024 2:39 am

Keep us up to date when you get out of the hospital. Regards, IGGIE

kittybou
Jul 01, 2024 2:53 am

Everything will go smoothly with no problems. 🤗😸

June Bug
Jul 01, 2024 3:30 am

I am so happy for you! Will keep you in my prayers! Let us know how you did and how you are doing. Are you happy or rather say, overjoyed? 😄 You will do just fine!

AlexT
Jul 01, 2024 4:27 am

Another one going to the other side. 🤦‍♂️ Good luck.

ron in mich
Jul 01, 2024 12:39 pm

Hi JVM, wishing you good luck and a speedy recovery.

DexieB
Jul 01, 2024 4:26 pm

Best of luck and a speedy recovery! You got this!

Mysterious Mose
Jul 01, 2024 5:31 pm

Best of luck to you. I hope everything goes smoothly for you. Keep us posted. 😍

Daniel

MarvyMarcia
Jul 01, 2024 11:35 pm
Reply to Cheekymonkey111

Hope you had great success

Lovey
Jul 02, 2024 9:36 pm

Hi JVM261,

I'm new to this group, but I read your post and wanted to wish you well.

I hope your surgery was a success and that you're recovering nicely.

I hope Lester and Large Colon are behaving wherever they are and that your scar tissue is going where it can help you 😁

You seem like you have a wonderful sense of humor; that's awesome!!!!

It's funny what originally drew me to your post. I had just finished filling out my info for the group and I thought, "That's strange, I didn't put a picture of our dog on here." So I clicked on it and it was actually your dog, lol. Our dogs look very much alike.

Then when I read the note you left on the ostomy bag, I literally laughed out loud and said, "You're my kind of funny 🤣!"

I hope you're being taken really great care of.

I'm here if you ever feel like chatting!

Take care,

Lovey

 

 

JVM261
Jul 03, 2024 1:15 am

Mysterious moose. I forgot to say thank you to you too. Well, I made it through obviously. I only have two puncture wounds from the machine. And the ileostomy closure is a lot smaller than I thought. They cut the gauze into a small ribbon and stuff it in me, and it's really a weird sensation. It's such a long piece of small thin gauze. I am on a lot of painkillers, I'm very sore, and the stoma is pulling down on me. It feels that way. Tugging me. The surgeon says it's normal. They put a bag in me like a tube with a bag on the end. I'm just emptying blood, but there's no poop yet. I don't really have gas in my stomach. It just burns where the stoma was, and there's a lot of gas under my shoulders. I threw up a few times. I'm not able to keep food down. They have me having liquid, but I can't keep that down. At least I don't have a fever, and they're pushing me to do therapy, but I think it's too soon. Otherwise, I'm hanging in there.

7dragonflies.hm
Jul 03, 2024 1:47 am

Yay!!! So glad for you!! Sounds like all part of the process, just take it easy, you're doing great. Proud of you ;-) Rest and be well. Thank you, good Lord! ❤️

JVM261
Jul 03, 2024 3:03 am

I passed stool!

JVM261
Jul 03, 2024 3:14 am

I just had 2 cups of Jell-O today and I thought I threw everything up, but I guess I kept some of it down and I'm now passing gas out below. Surgery was around 9 AM yesterday. If you had told me, I would have been posting about this online last year. I would have told you you were nuts, lol. The gas is like little bubbles, lots of little bubbles. It's a very weird sensation.

Welltree
Jul 03, 2024 3:44 am

Do you wake up with a tube in your throat for 24 hours?

JVM261
Jul 03, 2024 10:55 am

No, just tube in butt and bladder.

Morning glory
Jul 03, 2024 1:09 pm

You are going to heal more each day. You are prayed for by many of us here. Do your therapy and continue to keep us updated. I know you will be such an encouragement to others in your future posts.

IGGIE
Jul 03, 2024 2:10 pm

I hope all went well. Regards, IGGIE

JVM261
Jul 03, 2024 2:42 pm

They sat me up on the side of the bed today for the first time, and I couldn't do it for more than five seconds because the burning from the stoma was so bad. My stoma is open with gauze that I placed inside deep. It burns as if somebody was putting salt on it. I'm so worried that if I can't sit up, they're going to send me back to rehab, and I can't stand it there. With my insurance, that's the only place they're going to take me.

Mysterious Mose
Jul 03, 2024 3:21 pm
Reply to JVM261

Hang in there, kiddo. Hopefully, the discomfort and pain will pass soon and you can avoid rehab. My own limited experience with rehab joints was not pleasant. Keep moving forward. :-)

Daniel

DexieB
Jul 03, 2024 5:55 pm

Sending prayers! Hope you feel better soon!

JVM261
Jul 04, 2024 5:39 pm

The pain is a lot less. It's more annoying than shocking today. Last night, the IV stopped working again, which is common with me because my veins are not good, and I got really angry and told them I'm not doing IV anymore until they take my butt tube out and put me in my wheelchair so that I can start feeling what control I have. Because I was throwing up on the second, they told me that I needed the IV in case I get dehydrated, but I'm not throwing up now, but they said I have to have it back in case, so I said OK and they said they would get the IV and then get my tube out. It's still in me, the tube, even though the new IV is in, but I told them it has to be out today. Tomorrow I'm supposed to be moved to a solid diet. I've been on all liquids since Saturday and I'm hungry. I'm just annoyed and I want to go home at this point; I want to be with my dog. I paid somebody to watch her, so she's OK. They are afraid because if they take the tube out, it's going to be more work for them to clean, and I know that's what it is, but I have the right to see how my butt works and I have the right to get in my chair and I have the right to refuse the rehab, and the only way that they're going to see if I can go home is if they let me in my chair and they let me use the bathroom. It turns out I have almost a foot left of sigmoid colon. They should not be refusing me, because I'm disabled, the right to see what my abilities are, and I told them that I know that that's what they're doing because they don't want to clean me, and they're like, “Oh no, it's a holiday and the staff is less.” Whatever… I know it's crap, for lack of a better expression, and I know I want to go home. The IV is not hooked up. I'm off of IV painkillers as of last night because I want to move around and have as much balance as I can. I'm taking Tylenol and a muscle relaxer because of the stupid tube. I understand why they did it at the beginning because it was only blood, but as soon as I started moving my bowels, it's my opinion they should've got me in my chair. I will say that every time I drink, my anus area is like rumbling, like you know when you have an upset stomach and the stomach is rumbling. Well, my stomach is fine, but everything else is rumbling down there, but I guess it's normal. From what I can feel with the tube, I think I'm having about four or five movements a day.