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ICUsteps
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Almost a year after ICU stay and sepsis

It was December 0f 2017 when two hospital stays with misdiagnosis by a callous and uncaring hospitalist (She told me to get up and take a shower and I would be fine) resulted in emergency surgery to remove four feet of intestines with perforation and sepsis. I spent several days in ICU on a ventilator and had a colostomy. I am never sick so this was particularly devasting for me psychologically and emotionally. I lost my strength, 30 pounds and a number of other things that hit an independent horse woman very hard. Eleven months later I have recovered about 80% physically, the colostomy was reversed and I was sent on my way. However, I still have pain, diarrhea and nightmares from the whole things. There is nobody to talk to about it either. I have sudden, overwhelming bouts of extreme fatigue that nobody understands that I never used to have and a sense of just marking time until I pass. Anybody got any thoughts?

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Hi cskitchens I was in a coma 2016 for over a week with sepsis,pneumonia and life threatening asthma am still having the odd nightmares and flashbacks but am also suffering from ptsd now due to being serious ill it does get better just takes time maybe go to groups try yoga as it does help good luck u will get there.

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Thank you for your reply and insight. Nobody told me about this and the side effects. I had to read it on the internet when my hair started falling out.

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Your welcome my hair has come out loads have you been back to icu the nurses show you around and it makes you feel a bit better because your body has been through hell and back and it drains you mentally I’ve just come of antidepressants after being in a coma 2 years ago it’s took me ages to start feeling better but does get easier it can take anythink up to 18months to start feeling yourself but we’re still hear today which is brilliant here if you need advice.

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I moved from Texas to Wyoming so its not possible to tour the ICU. I tried antidepressants but every one I tried gave me nightmares after a few days, worse than the ones my own brain came up with. The colostomy repair was successful but I still deal with diarrhea. It's gotten better but after 5 months I'm really tired of it! I take all kinds of meds for it but I can't say that they have really worked any more than time. People who haven't been through this don't understand, do they? It was a year ago this Thanksgiving that I started feeling bad and just thought I was coming down with the flu. Wish it had just been that! I want to put all this behind me once and for all.

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I don’t know if you have ever come across post sepsis syndrome

sepsistrust.org/get-support...

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I have heard of it but not seen this site. Thank you for sharing it.

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I was hospitalised with sepsis nearly three years ago. I was in a coma for five weeks, intubated and all the rest. My recovery has been very gradual and has included many of the symptoms you describe – but I am still, VERY slowly, improving. Good luck!

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cskitchens gosh I am so sorry to read about your care. It sounds like you have PTSD. This can cause so many physical problems. Talking to a counselor/psychiatrist can help. It is sad the hospital did not offer you any of this. As for the diarrhea, a lady I know had a bowel made after ulcerative colitis and they gave her imodium to use regularly. Maybe go chat to a GP that you are comfortable with about these issues. If you don't have one, ask around your area for one that is easy to talk to and who can think outside the box. I wish you good luck and hope you start getting the help you need.

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Regarding past and brain trauma my life turned around after reading THE BODY KEEPS THE SCORE :MIND BRAIN AND BODY IN THE TRANSFORMATION OF TRAUMA. By Bessel van der Kolk and then ENERGY MEDICINE by Donna Eden both have exercises too . I had a stroke brain was in panic with pattern of panic daily I learned how to manage and prevent it occurring. Please please please share these books they are life changing I am saying this as a recovered stroke patient . I’m a changed woman. Managing one’s emotions and fears and thoughts is LIFE CHANGING

the NHS should place a greater emphasis on these aspects.

Apart from anything else there is a huge amount of research to PROVE that person centred care ( in other words respect for you and I as an often fearful and frightened patient ) is as important as the operation/drugs themselves. I do appreciate most of the people in the nhs are hard working and caring yet, and in every day life we can all be guilty of not being empathetic I do appreciate. However, the nhs is burdened with not enough staff. That together with too much emphasis on numbers and computers and lines and measurements reduces the amount of care, listening skills and empathy skills. Please share and take care. As an horsewoman you have guts and even though you might have lost some on the way ( haven’t we all? Not necessarily guts - hope you can take the lighthearted banter here - but having to face courage lol) read the books take back control ...I promise promise promise you will. If I can you can....ps I love horses lost the courage to ride now at 64 so please have a great horse ride for me

, take care,

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