Crohn’s disease affects such a wide spectrum, it’s hard to say what my crohn’s disease symptoms and pains feel like compared to someone else’s.
I know when I start feeling unknown pain in general, or get rashes, etc., my first place to turn is the internet. I plug in my keywords and try to decipher from there what may be going on with my body. Usually, I’m able to get a pretty good idea of at least a few different things.. I am able to read up on it, and then when I go see my doctor, I am armed with some information. (My doctor likes this too, he knows I’m proactive, informed and reliable.. it also has built a lot of trust.)
When I was first “hit” with the true pain of this irritable bowel disease, I all but ran to the computer to see what was going on. Some of the results led me to pelvic inflammatory disease, irritable bowel syndrome, cancer (bowel or other), appendix, cysts, and crohn’s and a few others. So I read up a little on everything and when I saw my doctor, I had a beginning foundation of what I was looking at.
Pain… the pain I felt in my lower abdomen was as if something – at first I thought my uterus – was swollen and tender. When I would sit, I had to do it very gingerly.. walking was even uncomfortable. The pain was so intense, but mostly achy and tender. At the same time this started, I was also assaulted with pains in my stomach – where my ribs start to separate… this was terrible – the pains were so sharp and piercing it would literally cause me to throw up (it appears now, this may be related to acid reflux, which had never been an issue for me before). The lower abdomen pain was a constant, never leaving, nothing over the counter touched it as far as relief went.. the upper abdomen pain would come and go.. never lasting too long, but terrible in it’s own.. I would get hot and break out in a cold sweat (how does that work??). Once I threw up, I’d be O.K.
I also experienced swollen joints.. specifically, one ankle swelled for no apparent reason. It last a couple days and went down.
I had a rash that would come and go.. it seemed to be triggered by anything rubbing my skin – my shoes, my jeans, my bra and sometimes it didn’t matter at all, it just came up. The rash would itch like something I’d compare to poison ivy, a practically uncontrollable, obsessing itching… it would wake me from sleep, prevent me from sleep, make clothing and shoes uncomfortable… and as quickly as it was show up and spread, it would disappear. So quickly, the doctors were never able to see it. I was given a prescription for a cream called triamcinolone to help the itch. Since I’ve been using that, I haven’t had the rash issues.
Two years before I was diagnosed with crohn’s, I was given a cream for rosacea – the midwife I’d been seeing for the birth of our last son thought maybe the red patches on my cheeks were caused from it.. I suspect now it was the crohn’s popping out in other ways.
Over time, crohn’s was acted like a drain on my body… my body was sick, because with crohn’s the immune system actually actually attacks the red blood cells… which may cause anemia and most certainly fatigue, the diarrhea.. I had no energy, I was living on Ensure to get vitamins, and my weight, was dropping and alarmning started losing a pound a day.. which is what pushed me to the doctor.
Again, I can’t say what other Crohn’s Disease sufferers feel, exactly, but the pain, the fatigue, the depression.. it’s hard, it’s real… it can be all-consuming. I am thankful for the sympathy and understanding, not to mention patience and acceptance, I receive from my family and friends. I have a network of doctors (for my medical health) and family / friends (for my mental health and livelyhood). Without them, I couldn’t do it… with them, I sometimes even wonder how I do…..