Little Things Can Make a Big Difference

Last updated: April 2020

Over the course of my almost 16 years as someone with ulcerative colitis, I have learned quite a lot. You do have to go through a good amount to really learn the ins and outs of hospitals, procedures, what things could be refused and what shouldn’t for safety reasons, etc.

Once you are someone who has been through your share of hospital-related experiences, I think it becomes your right to ask for things that you know will make a certain procedure, surgery or experience even a tiny bit easier for you.

I have a few examples of this I want to talk about.

Examples of things to ask for in the hospital

The first being something I think many people who suffer from Crohn’s disease or ulcerative colitis can relate to and that is having poor veins. Between prednisone and being poked and prodded for so many years, many IBDers have a hard time getting an intravenous line in them. Dehydration doesn’t help.

Mine always seem to look good but roll. There is also scar tissue in some. When you are in the hospital, they are like vampires with blood drawings! Plus, you always need IV access and if you are getting medication(s) that are particularly difficult for your veins, it can cause the IV to blow or begin to infiltrate, causing pain.

A central line after surgery It is for this reason that I always asked for a central line after my surgeries. Even though having an IV in your neck is insanely uncomfortable, it is way better (in my opinion) than having the added anxiety and pain of blood drawings or IV sticks. Central lines are meant for a shorter length of time as opposed to a PICC line or port of some kind.An ultrasound machineI also recommend getting an ultrasound machine if you are going into the ER, admitted to the hospital or need to have a test done. They can see things that most people can’t with the naked eye. A nurse who had Crohn’s disease was actually the first person to use this on me. I remember him telling me he knew how it felt and that he wanted to make it easier. He was one of the best nurses!Repeated blood workFor those of you inpatient and have people needing to take blood every single morning, I recommend asking what is being checked. So much of the time it is just standard protocol and you shouldn’t be the victim of that. It may not seem like a big deal to have blood drawn but when you are sick enough to be in the hospital, ER, and/or having a test or procedure done, everything is a big deal. Especially if you have been dealing with illness for years.I recently had a procedure done where they usually just heavily sedate the patient. This has been a procedure I have had done before, with their usual “sedation” type of medication, and it was an awful experience for me. My PTSD played a huge role in it but I also can’t deny the reality. Request an anesthesiologistThis time, I asked to be put to sleep or at least have an anesthesiologist present so if I needed something like propofol (what they typically use during a colonoscopy,) it could be administered. I learned over the years that unless a doctor is an anesthesiologist, their hands are really tied in terms of the medications they are allowed to administer to keep you comfortable during a procedure or exam.It was a great thing I asked for an anesthesiologist to be present because the procedure went much longer than anticipated, they wanted to insert other catheters/tubes during and apparently required a lot more things to be done and navigated through than anticipated. Given my previous experience with this procedure, I knew that everyone involved would be better off if I was heavily medicated :)It's important to ask for things when we canThere are a lot of things we go through as patients with a chronic illness that are flat out torturous, violating, painful and unfair. If there are small things we can do here and there to ensure we don’t feel the emotional and physical effects of what is going on AS much, why shouldn’t we ask for them?Are there things you have done to make sure you have a better experience during the course of your journey with inflammatory bowel disease (IBD?) The more we share with others, the more we can potentially help mitigate some of the needless suffering so many of us experience.

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