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Posts (5)

Tue, Apr 30 10:37pm · Ostomy: Adapting to life after colostomy, ileostomy or urostomy in Digestive Health

@meg22 Hi,
I hope you’re healing well and either have had your reversal surgery, or have it scheduled. I also had a diverticulitis perf and had a colostomy for 3 months. I also had an open wound after my staples were removed and I think I was a pocket of infection that needed to seep out. I had trouble with finding the right bag that didn’t leak. It was difficult to return to work. Fortunately I had experience taking care of colostomy bags, just not my own. I had a would care and ostomy nurse come for 6 weeks to do home care. This was in 2013, I still take senna and the first year was not easy to be “regular”, my doctor says I still have diverticulosis that she couldn’t remove everything or she wouldn’t be able to reconnect. It’s a 50/50 chance I’ll end up with another. My last colonoscopy went well and I cried so hard afterwards because, well I suppose I wanted the good news so badly. I hope that things are going well for you. And I’ll look to see if you’ve posted again. I still have to make sure I go on a regular basis. And I had incision pain for at least a year after the reversal. I was 29 at the time, and things get better.

Tue, Apr 30 10:02pm · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@janegigi
I am so sorry that you had that experience. That is never ok. You have every single right to be angry. And I agree, we have to advocate for ourselves. Two hospitals discharged me with a perforated colon, and I was sent home with Steven Johnson’s Syndrome. It has always been my dream to be a NP, how could I go back? I had a blood clot and told them I’ll not be admitted. I avoid the hospital at all costs. My Grandma just passed I watched her take her last breath. I feel comfortable with her not being alone, but I feel triggered. It’s been a huge setback and no one in my family understands. Thank you for sharing with me.

Tue, Apr 30 9:49pm · Post ICU Nightmares / Hallucinations in Intensive Care (ICU)

@kariulrich
Hi,
Thank you for sharing, I’m sure it is not easy. I had a similar experience when I went from Maple Grove hospital to North Memorial. I remember them calling a “rapid response”, and nurses arguing if I am ICU material or not. The rest is a blur until I was moved to the Oncology unit (I suppose that’s where they had an open bed). During the time I was in the ICU my mother and son came to visit me. I don’t recall telling them not to visit me, but apparently I did. Having worked in the ICU and all over the hospital I didn’t want my family to see me in that much pain. That’s the only reason, I can think of that I would tell them I didn’t want to visit. My husband came from the UK back to Minnesota to help me before discharge, and at home. He broke down and after all that I had been through, facing my own mortality, I felt the need to comfort him. We have not been married long and it is a struggle on our relationship because I am not the woman he married, and won’t ever be again. I struggle with why I am still here daily. I work in the hospital and have been on leave since my hospitalization. I tried to return to work and it was terrifying to go back into the hospital and have my own patients again. I have nightmares and I can’t seem to cope with what happened to me. I was discharged almost 7 months ago. I see a therapist, my GP, and a psychiatrist. I have to take medications to sleep without nightmares and I try very hard to remove myself from stress. Because I can’t cope. It’s hard to find a good psychiatrist as the first one I saw brushed me off. These have been the things that have given me tools to get out of bed most days. I hope this helps. I also am going to check out the nightmare group that @colleenyoung suggested.

Sat, Apr 27 10:24am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

@rosemarya Thank you for your kind words and thoughts. It feels comforting to know that other people understand. When faced with my own mortality I am forever changed. I will look at other conversations including depression, on this Mayo Connect. All of my ICU Staff were lovely. So I’m chalking it down to maybe knowing too much. The PA that sent me home misdiagnosed to die, I often wonder what purpose I still have here. If I didn’t make that decision to get a second opinion, I wouldn’t be here. I have so much anger for the PA that misdiagnosed me and it was neglect. I asked if the medication was causing my symptoms (Steven Johnson’s Syndrome), she said to keep taking it. It’s hard to have faith in a system that fails so often. I’m still trying to understand, and rid myself of the anger and confusion. It seems to come in waves. Thank you for your kind and thoughtful reply. -Kay

Tue, Apr 23 11:37am · Post-Intensive Care Syndrome (PICS) - Let's talk in Intensive Care (ICU)

Hello, I happened to come by this group researching PTSD post ICU. I’ve had two ICU stays, the first of which encouraged me to get a job in the ICU as a CNA and eventually be an ICU nurse. I have lots of experience working with ICU patients. I’ve wanted to be a nurse since getting my nursing assistant certification in 2005. After my last ICU stay I no longer have any desire to enter a hospital. I’ve been diagnosed with PTSD, Major Depression, Anxiety, Panic Attacks, and Agoraphobia. This is devastating to say the least. I have worked in a state psychiatric facility, I have a position at the hospital currently which I am on leave from as a float pool CNA. I am six months from hospital discharge. I see a psychiatrist, therapist, and my normal doctor. I feel stagnant. I was on short term disability my last check was in December. I have been denied long term disability, I’ve hired an attorney to contest. All of my providers agree that I can’t go onto my position at this time. I am on four daily medications. My first ICU stay was a partial colectomy with a colostomy. I was there for 12 days and at 29 years old handled it like a champ. I have the reversal surgery a few months later and coped fairly well. This last ICU stay was due to a medication to stabilize my mood swings called Lactimal. I had a severe allergic reaction to this medication and went to the clinic and was told by the PA to keep taking the medication because I had an influenza like illness with a rash unspecified. Well with fevers of 103 for two more days I decided it was time for a second opinion. I went to the ED and was transferred via ambulance to a level 2 trauma hospital where they called a rapid response code, which is all too familiar for me and I don’t remember much more. I had a bone marrow biopsy, blood transfusion, and all sorts of tests. Looking back I should’ve advocated for myself more. I’m angry that I am not normal anymore. My family is suffering, I’m 35 and supposed to have applied to the RN program. Instead I keep replaying every minute of that second hospitalization in my brain. I have dreams, and nightmares. I feel like a failure. I don’t like to leave the house and I don’t know what I’m going to do with the rest of my life or when I will start feeling better. I should note that my hematologist’s diagnosis was SIRS. Thanks for listening.