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Can I get a procedure done w MDS and low neutrophils?
Hope someone can help me w this latest problem..
I have mds and low wbc rbc platelets and iron. I had been on oral iron without issue, until i ran out of pills and had like a week gap before getting a new bottle. I just went right back into taking them which was a mistake since I ended up getting an anal fissure from the constipation it caused which has been incredibly painful to say the least. Of course from now on I will only get iv iron.
I have been dealing w this fissure since beginning of June, but had some relief w some special ointment and strangely enough getting a botox injection (yes, right in to the anal muscle ouch). I had partial relief and then it retore and I am terrible again. My colorectal doctor says I need a procedure done at this point becuase the less invasive option didnt work. When I tried to get clearance, my hematologist denied me because my neutophils ANC went too low at 0.7. Also, I lost a ton of weight from this, which is bad beause I was already really thin.
I understand the risk of infection and this scares me too. I have an apt w my hematologist to talk about options/make a plan .. but I just wanted to understand what some options may be for me and if anyone had a personal experience to share. I read about neupogen and how that may temporarily raise neutrophils so that I could get a procedure done. But I am worried because online it said using neupogen is more complicated for someone w mds. And I am worried that the neutrophils may not stay higher long enough to protect me from infection through all the time I will need to heal. Ideally I would want to wait until the neutrophils go up (I am still hopeful) but I am just in a lot of pain and don't know what I should do.
Has anyone with low neutrophils been able to get a surgical procedure done? What extra steps did you need to do? And did everything end up working out?
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@lhick Oh golly, you’re in a bit of a predicament right now. With your neutrophil count so low having any type of surgery can be pretty risky. Especially in the anal area. Along a similar experience, when I was undergoing intensive chemo for AML, mid cycle I became severely neutropenic, ended up back in the hosptial for a week with a neutropenic fever.
Because of the also low platelet count, apparently an internal hemorrhoid, which I didn’t know existed, decided to enlarge. Well, that resulted in nothing being able to move past it! 😳 Had the urge but nothing could beyond the ‘gate keeper’!
This borders on TMI but here goes…My hematologist wouldn’t even consider allowing the nurse to give me a suppository to ease the passing. It was too risky for infection. So I had to wait until my WBC started to rise enough. 7 days! At which point the doctor came into the room all smiles telling me that he set up a ‘date’ for me with my nurse for an enema! I was actually looking forward to it! So you can imagine how constipated I was at that point. (And nervous for what was to come. LOL) Finally I was able to have an enema and, well, that’s another story!! But it came with great celebration! 😂
Anyway, that just shows the seriousness of the potential for infection when neutrophils are low. Considering the level of pain you’re in though, it’s also important for you to be able to have this fissure corrected.
I’m wondering if your hematologist might suggest Neupogen. From my understanding, Neuopogen may be given in low doses intermittently to help bring up neutrophils in compromised patients. That could possibly help to bring a more sustained level of WBC, enough for your hematologist to give you the go ahead for the surgery. It wouldn’t be a longterm application but work as a crutch to get your through surgery and recovery.
I’m so sorry you’re having to go through this. I know it’s so uncomfortable and certainly interferes with daily activities! When is the hematology consult?
The hematologists are pretty absolute
about 1000 , less is totally a set up for sepsis.
Did the surgeon suggest a bidet.
They are now inexpensive to place on top of your original toilet as a do it yourself project