Crohns and UC

[Gurleysgrl]

I was diagnosed with Crohns and UC in 2009 after returning from a military deployment. I had severe abdominal pain that put me in the hospital for over a month. Since then, I have been in and out of the hospital. These stays were at least three times a year and never lasted shorter than three weeks. I also almost died in October of 2015 from internal bleeding. Mine has been a rough road.
I have tried steroids, which didn’t do anything but make me feel like I was going crazy. I then tried Humira. The pain in my legs was so bad that we had to go another direction. Next, was remicade. I developed an allergy to it and had to stop. Now we are trying entyvio. The pain is horrible! I have one of the BEST Gastrointestinal specialists in Memphis. He is doing everything he can, but says I’m a hard case.
My Crohns is in my large intestines and Ulcerative Colitis in my small intestines. He has told me that if it were the other way around, it would be easier. I guess I have to do everything the hard way. My hair fell out already once and I’m just at a loss at this point. I’m always tired, irritable and in a LOT of pain. This is no way to live!
I use to be physically fit (military fitness scores were perfect), active and outgoing. Not so much anymore. I get sick really easy so I try to stay away from people in general. This isn’t like me at all.
Does anyone else feel like this? Am I alone?
If anyone has any advice... it would be appreciated. I’m tired of doctors offices, chemotherapy infusions and just everything that comes with having Crohns and UC.

 

[valleysangel92]

Hello, welcome to the forum

Just wanted to clear something up first off, generally, you either have crohns or UC, not both together. Are you sure you were told its both? Its quite a common confusion as doctors will say people have " crohns colitis", meaning that someone has inflammation of the colon caused by crohns disease, but patients think they mean that they have both Crohns and UC together, which most doctors say isnt possible, so I'm curious about what you've been told?

I feel your pain regarding treatment, I have also had an allergic reaction to a medication called inflectra, which is like a non-branded remicade, and have burnt through most of the other treatment options in one way or another so I'm on entyvio too.

Its understandable to feel frustrated in these situations, I often get told I'm complicated because I have a mix of conditions which can make life hard for the doctors, so I completely understand feeling scared and wondering where you go next.

Entyvio is well worth a try, I know some people don't get much of a result from it, but I also know people who have gone into complete remission. For me, its just sort of keeping me stable, I still get pain and flare ups where I feel sick or the pain is more severe, but in general I'm doing better than I was before I started the infusions. I've managed to keep my weight on which was unheard of in the past, and I've managed to stay last a year without a hospital admission for the first time since I was 19 (im 25 now).

If this doesnt work, something like stelera or cizima may be an option to you, these are both biologics too and seem to be available in America much more than the UK .

I can completely sympathise with being tired of meds, doctors and all the fun stuff of a chronic illness, and I know there are lots of people here who also understand all of those emotions, so you're definitely not alone. We're all in the same boat here and will always do our best to support and advise where we can. There's nothing we haven't seen or heard before so theres no need to be embarrassed about anything and we won't ever judge you.

 

[Scipio]

My Crohns is in my large intestines and Ulcerative Colitis in my small intestines. He has told me that if it were the other way around, it would be easier.

This doesn't make sense, since by definition UC is confined to the large intestine. I suspect what you really have is Crohn's in both your large and small intestine.

Your doc is a big GI, and that's good, but you may need to consult with an IBD specialist. I know Vanderbilt has some good ones, but that may be a little far to go from Memphis. I suggest you consider a second opinion from an IBD specialist if you can find one in your area.

Vanderbilt:
https://www.vanderbilthealth.com/digestivedisease/30865