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Terrible blood work and post op complications

afidz

Super Moderator
First, I don’t want to repeat myself, so if it seems like I skipped something, you can probably find it in this post. I’m kind of all over the place because a lot has happened https://crohnsforum.com/threads/fluid-buildup-after-surgery.85084/#post-1021240

I have failed almost every biological, Asacol, and Imuran. I have been unmedicated for almost a year because I had to have a major surgery. My GI was okay wth it because last September my colonoscopy/biopsy came back immaculate. I was in deep remission, the only sign that I’ve ever even had disease is the scar in my intestines from the colonoscopy that started this whole mess. The plan has been to restart Stelara after I got back from Cleveland and healed from the surgery. 4 months post op I had an infection. So I had to push it back. Now I am almost 9 months post op and I feel like I am starting to come out of remission (it’s been almost 10 years!) My GI agreed that things might be kicking up again, so he wants to get Stelara restarted as soon as I can. Insurance wanted a bunch of blood tests... but real quick, 3 days post op my WBC count sky rocketed. The team of surgeons watching over me after the surgery freaked out. The did CT scans, monitored my vitals, watched for infection. Nothing! They said that those kind of numbers indicate cancer, but there’s no way it would skyrocket overnight. No one could figure it out. So fast forward to now. I had an infection, the infection cleared. My WBC count is HIGHER than it was when I was in Cleveland. It’s 1.8 million. Normal is 300-400k. I’ve had a bone marrow biopsy, I don’t have cancer. So there must be an infection. But I don’t have a single sign of infection other than my WBC and the left side of my torso and pelvis have been hurting on and off. The swelling and fluid retention comes and goes. But that was going on before the hernia was fixed. It usually is at its worse before and during my period.

I just need answers. I need to stop feeling like complete shit. I need to get on Stelara. I am getting a CT in the next few days, I’m hopefully there’s an explanation and it can be resolved.
Has anyone ever had an incredibly high WBC that was infection or cancer?
 
Just saw this afidz. I am so sorry to hear this--this must be terrifying for you. I do not have any helpful experience for you--I just wanted to say that I was thinking about you. Please let us know how things go. 🤗
 

my little penguin

Moderator
Staff member
Any rashes ?? Spots pimples etc...
Neutrophilic dermatosis can come with crohns and mimics infection in the blood when crohns is flaring
May not be a more than few but ....
Even tiny stuff
Hugs 🤗
 

afidz

Super Moderator
I’m hoping to hear from my GI today. I got a CT on Friday. No rashes or pimples. Just intermittent pain on my left side. No spleen. But every doctor I’ve talked to said that WBC do go up if you don’t have a spleen, but not this high. My GI has always mentioned that my WBC typically runs higher and always has, at least since he started seeing me 10 years ago. But again, not this high. I just want answers
 

afidz

Super Moderator
I heard back today. Good news is I don’t have an infection or hernia. You can tell me that a thousand times and I will never get sick of hearing it. My liver is enlarged and there was stool in almost all of my colon. I’m not sure if I’m starting to have Crohn’s problems and it’s constipating me, but I never feel constipated. When I do go, I don’t have to put a whole lot of effort into going.
I am going to make an appointment with a hematologist tomorrow. I read that a high WBC count over a prolonged period of time can cause organ damage/failure so I’m wondering if the two are related.
 
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