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Chelly
(@chelly)
Joined: 4 weeks ago
Posts: 50
Topic starter  

I’ve already posted in another section asking for help with an issue I’m having but thought I’d come here to post my story of how I landed in an ileistomy pouch. 
it all started with constipation. Something I’d never had before. I was always regular. It happened overnight and I will never forget the first time. Happened at a Christmas party for work in an elegant restaurant . I kept excusing myself from the table to go to the restroom. Everyone kept asking if I was ok. 

From then on started my journey of hell with doctors. Many colonoscopies and probably over 100 emergency room visits. the emergency doctors started getting upset at me for coming in but I was in so much pain. I felt as if there was a 100 pound weight pushing down on me below. Almost like childbirth. My rectum would spasm and become so painful. I would just lay in bed praying to God. 

I was sent to urogynecologists  Etc… many specialists and they did find a very small rectocele but felt it could no way be causing the problem.  They had me do physical therapy for that but nothing changed. Did therapy twice actually. 

I started seeing a gastro doctor at a well known hospital. She did a colonoscopy and said I can’t help you anymore just take laxatives. I was on 4 laxatives already. One which was the gallon drink you take for the colonoscopy only I was using it here and there to clean out when they would see I was packed up again on X-ray.  I became a pro drinker go lightly. A drink that used to make me want to vomit had now become my best friend. 

I did a little googling and found there are many tests they could do and that maybe I should see a colorectal surgeon so I set an appointment and lo and behold a week later they called to say they cancelled my appointment and to go back to gastro. I said but yes she is not helping me. 

it got to a point that go lightly would not even work any longer and I had an ileus that they saw on a cat scan in the ER but instead of admitting me and putting in a nasogastric tube they sent me home on laxatives and reglan  telling me not to eat and only liquid. I lost so much weight and could only eat oatmeal and yogart for months. The gastro said it’s ok if I don’t eat for that long and that she was not going to be performing anymore tests. Sent me to a psychologist……. Say what????? Ok I’ll go along with her charade and I went in. The psychologist asked why are you here for this? When I look up your record you have an ileus and they send you here??? I told her yep. 

she said we live in an area fortunate where we have a lot of good hospitals so please go somewhere else to get some help because this hospital was not helping me as they should. And by the way she worked at the same hospital. She said she could only help me with some therapy to relax me when I’m in pain but the pain was so unbearable I could not concentrate on that therapy. 

 From that day I set up an appointment at a very well known hospital. A hospital that leaders and other fly from other countries to get care. It started with the urogynecologist. She talked to me about possibly getting a bag but first she was referring me to gastro where they immediately started doing many tests. At this point I was still not able to eat much. 
I was then sent to a colorectal surgeon. he set up to do a temporary ileostomy on me to see if it made a difference and then if it did we could go further in a year or so. The temporary was perfect!!!! No more constipation but I was getting constipated with mucous balls now. They would have me do enemas to get those out. Then they did a colonoscopy and I woke up to the performing doctor telling me you need to get your colon out. It’s not working and we don’t know why. He said he had to abort the procedure because I was loaded, packed with mucous balls. So many that he could not even wash them all out. 

back to colorectal surgeon and the proctocolectomy was scheduled. He gave me a choice to stay as was, take it down or remove the colon. I told him to get it out. It was a long surgery and I guess the doc ran into some problems. The next day I got ileus. Stayed in the hospital for 30 days I do believe it was. They put a feeding tube on me to relive the ileus because I could no longer handle the nasogastric tube. The feeding tube was not for eating but to let out the fluid into a bag in the side of me. To eat they hooked up nutrition through a port through my blood veins. They sent me home and I had to walk around with an IV pole and feed myself every day hooking myself up to the port etc… they taught me how to do it. They even delivered a small fridge to keep the feeding bags in and tons  of medical supplies. I finally got better after being home for 2 weeks after they allowed me to eat small portions of soft foods. I went back to work but still had in that feeding tube to let out fluid when I’d get a stomachache. Finally got that out and back to life as normal. Very normal I must say.

Wearing a bag was minimal discomfort to me compared to the extreme pain I endured before having one. However I developed parastomal  hernias. One on the side where I had my temp and now one on my new stoma. Was sent to a hernia specialist that does parastomal hernias. He said I’d have to quit smoking and loose weight first. I knew that was impossible at that moment with the smoking due to my son had just passed away. 
a few months later had bad pain and ER said I was getting blockage due to hernia. The hernia doctor said we have to do the surgery now regardless because now it’s mandatory I get it done. That surgery went very well and pleased with the outcome but I do have a small parastomal hernia coming back now but my fault for lifting. 
this is my story anyhow and thought I’d post in case it may help someone else. They never did find out what was wrong with my colon. They just knew it wasn’t working and could have been from a medication  I was taking. No cancer and the pathology was showing nothing.

 

I don’t care that I wear a bag as I am pain free and can poop. I was traumatized by that first hospital for 4 years because they would not investigate it offer me choices like this ileostomy. It made me loose faith in doctors but the second hospital helped me regain that faith and treated me as a human and with respect.
 If you know your body and you know something is seriously wrong and no one is helping you. Don’t wait so long as I did. Go somewhere else for help even if you have to go to a few different  places because eventually you will find the right doctor who’s going to look into it. I have read many., many stories of even cancer patients getting sent to psyche doctors and then to later find out they had cancer. It’s a shame. A real shame.

something that makes me really sad is Farrah fawcett. She refused to try getting a bag for her cancer. She I guess could not see herself wearing one but she is passed away now. 
a bag is not so bad. 


   
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john68
(@john68)
Joined: 5 years ago
Posts: 1880
 

Hi Chelly, Thankyou for sharing your journey. The back story for so many ostomates is a long process of testing and confusion, distress and months and years of illness. Finally when relief comes its such a release to enjoy normal life again. Sharing your story helps others 🙏👍

ileostomy 31st August 1994 for Crohns


   
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VeganOstomy
(@veganostomy)
Admin
Joined: 9 years ago
Posts: 3783
 

Thank you so much for sharing your story, Chelly.

That runaround is such a terrible thing to go through, but I'm glad you persevered and turned things around. 👍 

Just your friendly neighborhood ostomate.
~ Crohn's Disease ¦ Ileostomy ~


   
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Lynne
(@lynne)
Joined: 3 years ago
Posts: 65
 

Chelly thank you for sharing your story.  I admire your strength and perseverance and am glad that you are on the other side of that challenging period in your life.  Wishing you all the best.


   
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GoatHerder
(@goatherder)
Joined: 2 years ago
Posts: 114
 

Good grief did the medical profession fail you.

If you are in a country where you can file suit against that hospital, I'd sure consider it! 

So happy you are well now!

I also spent a month in hospital from multiple complication, but those were all caused in the end, by my body not dealing will with general anesthesia. It stopped my heart 3 times during 3 surgeries, and put me in a coma on the 3rd.  Cancer  and pain free for 7 1/2 years and counting.

All the best life can give you now!

Retired engineer, now goatherd
Ostomate since 2015: Mid transverse after cancer
Our goats always live at GoatsLive.com


   
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Chelly
(@chelly)
Joined: 4 weeks ago
Posts: 50
Topic starter  

Thanks to each and everyone who replied here.  Yes, I posted in case to help others who may be going through similar. 
I think we have all been in similar boats throughout our journeys before getting help as far as the reply about suing that hospital that did not help me, well, I was just happy getting to the new hospital to get help that I did not care anymore but it did leave a mental scar on me about doctors. I lost my trust and faith. Yes an ileus and was was told sorry we are not running anymore tests on you.  Sending you to a psychologist. I felt so alone and helpless and the pain I endured. So much pain. I won’t forget it but I have moved on from it. Feeling good bowel wise now. 

 

 


   
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john68
(@john68)
Joined: 5 years ago
Posts: 1880
 

Hi Chelly, I love your outlook. Remember this! When steel is heated, beaten and heated and beaten again it becomes very very tough and strong 💪. An ostomy journey is a rough one! But the outcome can be a personal outlook for a better and happier life 👍 Be strong and walk tall 😀

ileostomy 31st August 1994 for Crohns


   
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Chelly
(@chelly)
Joined: 4 weeks ago
Posts: 50
Topic starter  

@john68 thank you and I love the way you put that


   
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