ANXIETY OVER HEALTH ISSUES=UC AND NO SPLEEN - Anxiety Support

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ANXIETY OVER HEALTH ISSUES=UC AND NO SPLEEN

rdt4
rdt4

My life has changed drastically. I have GI issues, went to a motility specialist who ruptured my spleen during a colonoscopy. My GI issues were already limiting my life, but losing my spleen has been devastating. No swimming (ocean, lake river, public pools) , no dogs or cats, avoid crowds, no malls, simple medical procedures require antibiotics, no public transportation, no travel abroad,, have a low threshold to see a doc when you feel ill, wear a mask, wash your hands all the time, no gardening,.It has ruined my life and I feel so isolated and alone. It ruined my relationship, so I really am alone and lonely but the risks of infection coupled with UC, makes it hard to find another relationship,

8 Replies

Why can’t you do any of those things? Incase of infection? X

rdt4
rdt4 in reply to Mariapalmer

yes..

I am in the US. I generally don't favor suing doctors just to get money, but in your case you might want to consider sueing this doctor. Also, I am not sure what a motility specialist is, but colonoscopies should only be done by gastro who DO A LOT OF THEM.

rdt4
rdt4 in reply to b1b1b1

the doctor is a world renowned gastroenterologist who specializes in gi motility issues. I thought about a lawsuit but apparently when you sign the informed consent for a colonoscopy you sign you are aware that rare side effects can happen, so no lawyer would take the case. Plus, if you are not disabled by it, lawyers are not interested. They don't see being immunocompromised as a worthy enough case and said it would be hard to win. It however was not the end of story. I had emergency surgery to remove my spleen because I was bleeding out and going into shock. As rare as it is to have your spleen ruptured by the colonoscopy. It may be even rarer that in today's standard of care in hospitals to give someone the wrong blood (I needed a transfusion I had lost so much blood) and somehow they managed to give me the wrong type blood, to which I had a reaction. Actually the wrong blood could have killed me as well as the ruptured spleen. But the lawyers said because I survived the wrong blood without long term damage, they did not think the case was worth taking. Bottom line- I honestly am now terrified of doctors and hospitals as well as live with anxiety and fear of infection. What I have learned is that often diagnostic procedures is worse than the disease. I still have the same GI motility issues but no spleen, PTSD from the entire experience and run the risk of overwhelming infections with a high mortality rate if not treated within a few hours.

annabettina
annabettina in reply to rdt4

Did the doctor tell you to get certain vaccinations?

Just want to add...everybody's chemistry is unique of course but I'll share this...a friend of mine lost her spleen in a car accident years ago. She only recently learned that there are certain vax for people with asplenia...pneumonia (spleen makes the immunoglobulins which fight bacterial pneumonia) and I want to say meningitis. However, during the many years she had no spleen and was Not vaxed, she never had any infection. And took no extraordinary measures to avoid infection...she had cats and was a hair stylist coming in rather close contact with a lot of people. This accident happened in her 20s; she's now 65.

My situation...I had a serious autoimmune disease in my 20s. At that time, I had a spleen. Then in my 30s, a scan for some other reason, found my spleen had become very tiny, like a "nubbin", the radiologists said, and fibrotic. The drs called it, "autosplenectomy".

Even though I had little to no functional spleen, I've never had any infection and never took extraordinary measures to avoid infection. Had cats, did animal rescue, went swimming in the ocean (I was a secular nun so wasn't at risk from STDs, one benefit I reckon). I guess I like to live dangerously :) and haven't had any innoculations (I don't even get the flu vaccination). I'm now 60, btw.

You may be different, though, so check into the vaccinations you need. I would also suggest (and drs often don't make these suggestions, just leave you on your own) talk to your drs about taking a baby aspirin every day. There can be hypercoaguability with asplenia, so always drink lots of water to help keep the blood from getting too thick, maybe fish or algae EPA or DHA to keep down blood thickness and/or use some other supplements. Don't overdo these things, just be wise and keep it simple like never get dehydrated, drink plenty of filtered water, etc. Maybe wear compression socks especially on long flights.

In short, do your own research, be your own advocate because unfortunately, greatly so, medicine and hospitals generally speaking....generally speaking...value the dollar over the health and well-being of the individual. Watch your own back.

All the Best to You

Please try not to feel like it's the end of the world. Who told you that you had all these limitations? My best friend's father had to have his spleen removed after a car accident that ruptured it over 15 years ago. Really, the only change to his life after the initial recovery from surgery was taking a daily dose of antibiotics every day for 2 years and taking immunizations for things like meningitis, hepatitis, pneumonia, yearly flu shot, etc. He has a dog and 2 cats, takes a bus and commuter train to work every day (he's a manager at a mall security firm!), he gardens and grows the best tomatoes I've ever tasted (he wears thick work gloves when he does) and if anyone in his family is sick, he takes antibiotics right away. His doctor always makes sure he has a prescription ready so he can fill it right away. I'm sorry that it sounds like someone told you that you had all those restrictions, but in my experience in observing his life, a lot of those are overkill. Maybe get a second and even a third opinion.

an infectious disease doc told me a lot of this. then going on the internet, joining groups of people who do not have spleens and hearing what they were told to avoid.

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