COVID-19 and Ostomy: Seeking Others with Similar Experiences

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944
infinitycastle52777
Jul 28, 2023 3:31 am

Okay, I am going to ask something and I think I know the answer...

Has anyone else gotten their ostomy due to having COVID?

This is my situation, and I have not ever heard of anyone else who got an ostomy from having COVID. I got COVID twice. The second time was the worst. I had a 108-degree fever, my lungs and kidneys were shutting down and then it struck my large intestines. I had emergency surgery and was in a coma for 3 days. When I woke up I had a stoma and a zipper of staples down my belly. It took so very long to recover, learning to walk was the thing I remember most. It was super painful to take even a step.

Since having my ostomy I have sought to find someone else who had a similar situation to me. Most people who have an ostomy have it from Crohn's or something like that. I had no history of digestive issues aside from reflux and it was a night and day difference for me to go from no symptoms to having an ostomy. With no warning.

I want to find someone else who can relate to this. I love talking to all of you out there but I do realize your experiences are different from mine. Very different.

Lee

Poppy Red
Jul 28, 2023 11:26 am

Sorry to hear your dreadful COVID experience.

Most of us are prepared and been so ill that we are glad to get an ileostomy.

I've not heard from anyone getting one due to having COVID but sure I've read about someone having an ileostomy due to an accident.

I hope you are getting on OK and have accepted it.

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Audrey Warren
Jul 28, 2023 12:39 pm

How did your doctors explain what happened to you?

w30bob
Jul 28, 2023 1:52 pm

Hi Lee,

Hate to tell you this, but you've not been told the whole story, or even a true story. COVID would not cause someone to need an ostomy. You need to have a long chat with the doctors who you dealt with. There were lots of shenanigans going on with COVID because of the money to be made and the misinformation put out by our government, but the repercussions of all that BS are now coming to light. Get a copy of your medical records from everyone who touched you during that time and start piecing the puzzle together. Your post is really troubling for a variety of reasons... so you really need to figure out what the hell they did to you.

;O)

AlexT
Jul 28, 2023 2:56 pm

Like Bob said, Covid isn't why you have an ostomy. Covid might have influenced recovery times, longer hospital stay, procedures, etc. I went through chemotherapy, radiation, surgery right at the height of Covid. The hospital system had to prioritize patients, adjust appointments, procedures, etc.

 
How to Manage Ostomy Leaks with LeeAnne Hayden | Hollister
TerryLT
Jul 28, 2023 8:13 pm

Hi Lee, I don't see any reason not to believe what your doctors told you. It sounds like Covid hit you really hard, and it is a well-known fact that Covid can attack the bowels. I had my own experience with it and can say it's a fact. I got Covid really late, only a few months ago, and after having all the shots available. It attacked me pretty good considering how much immunity I should have had built up. I was pretty sick, and one of the things it attacked was my ostomy. My stoma swelled up and got really dark red and sore. I had terrible bowel pain for several days. The only good thing was that it didn't affect my output, things continued to move. I had to get pouches with a larger flange and start using barrier rings, just to fit around my stoma because it was so big. I was quite freaked out. The ostomy nurse said it would hopefully go back to normal, and it did, thankfully, but it took a while. After a week or so it started to get smaller and the pain subsided. It was probably more than a month before I would say it was pretty much back to normal, and I could start wearing my old pouches with the smaller flange again. There is no doubt in my mind that this was caused by Covid, as it happened exactly when Covid attacked me, and there was no other explanation for it. I saw my surgeon during this time, and he confirmed that it was Covid related.

Terry

almelia
Jul 30, 2023 7:20 pm

https://surgicalcasereports.springeropen.com/articles/10.1186/s40792-021-01261-0

Perforation of the intestine is a known possible (though thankfully seemingly rare) complication of Covid. It is now known that the virus can attack and cause chemical changes in almost any organ of the body from the skin inwards.

TerryLT
Jul 30, 2023 7:37 pm
Reply to almelia

Thanks for posting this!

infinitycastle52777
Jul 31, 2023 12:21 am
Reply to Audrey Warren

She didn't really explain it much to me. She might have to my mom while I was in a coma for 3 days. What I know is that COVID caused a major blockage in my large intestines and they had no choice but to take them out or I would have died. I am not sure how Covid did that but it was shutting down all my organs. I have stage 2 kidney disease too because of Covid. It all sounds like an exciting tale when they told me how I had a 108 fever and I went to one hospital but they were not staffed to help me and I was rushed to a bigger hospital and taken right into surgery and they removed my large intestines and put me in a medically induced coma for 3 days and then placed my ileostomy. I remember being in the ambulance to the first hospital but nothing after that. Not till they had me try to walk for the first time. I had staples all up and down my stomach and walking was the most painful experience of my life. I literally had to learn to walk again. I remember crying trying to take my first steps.

Lee

infinitycastle52777
Jul 31, 2023 12:23 am
Reply to w30bob

Well, that is the only thing that was wrong with me prior to my ileostomy. I never had Crohn's and never had a digestive issue. I got COVID and boom, I nearly died. Lots of people did die from COVID. I was headed that way.

Lee

infinitycastle52777
Jul 31, 2023 12:36 am
Reply to TerryLT

Terry,

That sounds so scary!! If my ostomy blew up, I would freak out. I would also be worried about blockages. I worry about blockages anyway. Yes, I believe that I got mine from Covid, as the surgeon indicated. I think this because I don't think she would lie to me, and I had no intestinal symptoms before Covid. Also, she was not making money off me doing the surgery; I have Medicaid. Actually, she did both of my surgeries: the initial surgery and the relocation surgery. She has been good to me.

Lee

infinitycastle52777
Jul 31, 2023 12:38 am
Reply to AlexT

Alex, I had no need for an ostomy prior to COVID. COVID is the only reason why I had my ostomy surgery. COVID can cause all kinds of ailments. You would be surprised. I had to know somebody wouldn't believe me on here. Guess that would be you.

Lee

October22
Jul 31, 2023 2:25 am

Hi Lee,

I don't want to compare my situation to yours, which sounds utterly devastating.

But I did have emergency ileostomy surgery about a month after having COVID. And, like you, I'd never had Crohn's or colitis or any other bowel disorder.

With COVID (in late September 2022) I didn't have respiratory symptoms; mine were extreme fatigue and loss of taste and appetite. I took Paxlovid and tested negative within a week, but for several weeks after that I had a lot of nausea and vomiting and consequent weight loss and electrolyte disturbance. Then one morning (10/22/22), as I was getting ready to go to my volunteer job at a day shelter for homeless people, I had gut-wrenching abdominal pain and rectal prolapse (my intestines were literally coming out). I was taken by ambulance to the hospital and rushed into surgery. Six hours later, I had no colon or rectum and a permanent ileostomy. (A what?? I knew almost nothing about ostomies.) The reason: my colon had not been getting any blood and was literally "dead." My top-notch surgical team was mystified about the cause. While they acknowledged that COVID may have contributed to my need for colorectal surgery, they could not cite it as the cause.

I appreciated the link posted by Amelia. There have indeed been a number of articles in peer-reviewed medical journals describing cases of severe abdominal problems following and associated with COVID-19.

Ellen

jansarirn
Jul 31, 2023 4:17 am

In Sept. I died for 16 minutes. After resuscitation and 4 days of intubation, strapped down in an ICU bed, sedated with friends and family at my bedside ready to say goodbye, a fabulous surgeon, doing Saturday night rounds, looked at me, my imaging and my labs then took me into surgery right then, removed my necrotic colon and saved my life. I had never before had a GI problem. It may have been caused by the migraine preventative medication I was taking or by medium COVID (see paper written by John Hopkins pathologist Dr. Benjamin Mazer, MD, MBA. Published in The Atlantic Oct. 11, 2022 titled Medium Covid Could be the Most Dangerous Covid). This is found during the 12 weeks post COVID. Not acute disease, not long haul. It most often affects the head, heart, gut. Since you had COVID twice, perhaps you fell into that time frame. Having been in the medical field for the last 44 years as an RN, I took a deep dive, along with my surgeon, gastroenterologist and neurologist in trying to find the cause of my "Event." Ultimately I have come to accept that it could have been a conglomerate of causes. I took a deep breath and realized that what I do know is that I will live the rest of my life in gratitude. Gratitude for my medical team, family, friends and my stoma.

Jan

MostSuperTech
Jul 31, 2023 7:47 am

Hi Lee,

Sorry to hear what you are going through and I hate to hear that you think you are alone out there. Well, new to this ground or not (hi everyone!!! I'm new.) I am here to tell you I had the (almost) same exact thing happen to me.

Now, let me preface this by saying that I am no doctor or physician, or other medical expert. I am, however, an expert on what happened to me. I have talked to others locally as well and knew of one other case too here in the US. That other case was the relative of a physician close to my family and he was the first one to turn me on to this. I saw there was another link posted here too and I have found some of my own studies that link complications between your COVID and gastrointestinal issues.

So with all that said, let me tell you the shorter version of what happened to me and you can feel free to reply back or message me directly for more on this.

December 21, 2022 and for every other day before this - no symptoms other than bad reflux from time to time. None of the normal symptoms you hear about whatsoever up until this morning - including a normal bowel movement. Throughout the day I feel slightly feverish and somewhat "not myself" but nothing major. That afternoon I started getting chills and first signs of constipation, though I didn't even know it yet. By that evening, the pain was out of control and I could barely contain myself though I tried for hours. Come the 22nd, 6am, I finally give in as the pain hasn't gone away and it feels like I may have/about to burst my appendices. Called 911, went to the hospital ER, told them my symptoms, they did their obligatory COVID swab before my CT scan, diagnosed me, admitted me, put me in a room, and about 8 hours later tell me my test came back positive for COVID. I confirmed this was the case with my family still at home who also all tested positive.

Overall, I didn't think too much of it all in the beginning. It wasn't until after my 3-week stay at the hospital where I pieced the puzzle together and realized all this was from COVID. I mean, I still have diverticula growing and diverticulitis forming, but I now have an ostomy (ileostomy, to be exact) after being diagnosed with a perforated diverticulitis due to coming positive with COVID-19. Yes, I'd still have diverticulitis without COVID, but I may have been able to find out through other means and treated with antibiotics and/or other proven methods. No, it wouldn't have been so bad and I may not have needed surgery and ostomy given how much more time had gone on before finding out. They even tried to treat with antibiotics in the hospital for the first 2 days, but it just didn't work any longer as I was fighting too much in my body already.

Side note: I did later ask my surgeon as well and he gave the standard answer of "we still don't know what all the effects of COVID are and will be, but it is not something that can be ruled out at this time."

Hope this helps keep the hope alive that not everyone will disbelieve you.

- Manny

bennyrawood
Jul 31, 2023 5:55 pm

Sounds similar to my situation. I got COVID twice and the second time in Dec 2020 was so much worse. I went to the ER due to extreme intestinal pain and my lower back began to swell. I was hospitalized for 2 months. Lost so much weight (didn't eat or drink water for 45 days) and had to learn how to walk again. I had a perforated colon and antibiotic-resistant bacteria was in my body cavity. Now I have an ileostomy and hope for the day I can have a reversal!

warrior
Jul 31, 2023 6:27 pm

Hey Bob..how good does that crow taste now? ... Luv ya. Warrior

I hope someone opens a new thread for others to read.

"Covid and ostomies, for example.

This is unbelievable at first mention.

But as cases come up, it makes hearing these stories as fact not fiction..

Thank you for sharing. Pls open

a new thread to keep this going.

Titling it "Alone" is vague.

"Covid-Ostomy- Fact Not Fiction".

Will get people's attention and educate them and draw more answers.

Yancey
Aug 01, 2023 12:04 pm
Reply to TerryLT

I agree. The intestines are just one of the many organs COVID can attack. So sorry Lee to hear you're having to go through this.

infinitycastle52777
Aug 03, 2023 12:23 am
Reply to October22

Thank you for sharing your story with me. It helped me to not feel so alone. I was sitting here thinking how can anyone relate to me and my story. Most people have long time symptoms before getting their ostomy. I had none. My life is forever change because of that emergency surgery.

Lee

infinitycastle52777
Aug 03, 2023 12:35 am
Reply to jansarirn

I try to take an attitude of gratitude too. If I didn't have my stoma, I would be dead. It didn't improve my life, but it did save my life.

The funny thing about having Covid twice is that I had the vaccine both times. The first one and then the updated vaccine. They did nothing for me.

Lee

infinitycastle52777
Aug 03, 2023 12:52 am
Reply to MostSuperTech

Manny,

Thank you so much for sharing your story. That sounds awful to have had so much pain before your surgery. I may have had pain but I can't remember anything after the first ambulance ride to the first hospital. I have no idea if I was in pain or not. I also do not remember being transported to the second hospital. I don't remember going into surgery. I don't remember waking up after surgery. My mom said I was tied in restraints because I tried to pull the IVs out. I don't remember that either. I see my surgeon on the 8th for follow-up and I may ask her if she did any other surgeries like this for other COVID patients. I want to see what she tells me. Every day gets a little easier but things have changed. I can't seem to eat whatever I want. I have to drink electrolyte drinks to not get dehydrated. I have had kidney failure twice from dehydration. The crinkle of the bag always reminds me that I am not normal. I have to make sure I have enough protein every day too. And I have to watch my sugar intake. I never worried about all that before my ostomy.

Lee

TerryLT
Aug 03, 2023 8:07 pm
Reply to infinitycastle52777

Hi Lee, it's hard to feel gratitude when you are feeling crappy. I can relate. I went through almost three years of surgeries (four), hospitalizations for severe pain, blockages, prolapses, etc., etc., at least a dozen hospitalizations during that time. It took me a long time to get to a place where I felt healthy and started getting used to my new normal. You will get there. With an ileostomy, you will get used to keeping hydrated and keeping up your electrolytes, and it will become second nature. It's a pain in the butt, but beats the alternative, which for you and me, would have been death. I'm grateful now every day. Hang in there.

Terry

C. Difficult
Aug 08, 2023 12:19 am

Hi. I'm so sorry to hear your story.

I too had an emergency ileostomy, however I contracted C. difficile.

Entered the hospital with uncontrollable vomiting and diarrhea on Jan 2, 2021, admitted to the hospital that night and had my large intestine out on Jan 11. I woke up with the zipper and a stoma. I never had GI or bowel issues. It has been 1.5 years and I have become a shut-in.

My bio here is medically insane.

I'd love to hear from you. Someone who had no idea it was going to happen. How are you doing with it?

Tara