inflammatory markers

All inflammatory markers are perfect, including my calprotectin which is 15!! Yet I have another abscess. How is this even possible? I'm doing amazingly well other wise. I'd even say perfect.

I'm due to start a part time job next week...my first in 7 years. I'm in financial ruins and at the time I applied things were great; then earlier this week the all too familiar butt pain started, weakness, etc etc. I don't know how I'm even going to handle having a job when I'll need another 1 & D ( just had one in June and it took 6 weeks to recover).

The stem cell trial has once again been postponed until 2020-2021 and likely beyond. I physically and mentally can't handle another surgery. I already have anxiety about my ability to cope with work, dealing with joint pain, side effects from treatment and my gruelling treatment schedule, avoiding yet another virus, recovering from my port insertion (permanent ) and now another abscess.

Opioids have caused severe heartburn, possible GERD so I'm not sure how to cope with the discomfort. I'm assuming years of using them has caused this.

How is it even possible to have no inflammation and still be getting these evil things?? Surgeons don't do fistula repairs in Canada.

---

UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. Remission since! 150mg imuran
30 yrs IBD--started as parasites, then IBS, UC, PG, CD

both parents had IBD. My advice: be selfless don't procreate with CD.

IVIG on occasion.

Thanks for the response Delta. I'm hoping others will chime in, otherwise it's crickets here.

2 weeks ago I was ecstatic about returning to work....a challenge for sure but I was looking forward to meeting people and getting my toe wet again. If all went well I would look for something in my degree field in Jan. This is just a part time seasonal retail job. Today, I'm wondering if I should quit before I'm due to start given I once again will have surgery soon.....I dunno. How can I ask for time off (maybe a week) for a seasonal job? The purpose is that I'd be available to work....

Funny you mention the Qu Biologic Trial. I'll know this week if they'll even consider me. I doubt it as I'm not flaring (thankfully). Fistulas are my nemesis.

I've restarted oregano oil. You can only take it for 3 weeks at a time. Can't say it's really helped or even if abx help either----but in June after the surgeon removed the small abscess there wasn't anything to drain. So maybe it/they were helping.

My other thoughts are to try (once again) the MAP treatment but that made me soooo ill years ago and never stopped the first abscess from forming.

I had a tearful breakdown this am trying to figure this all out. And I'm furiously angry that I'm here again when I shouldn't be. I blame every surgeon for this. It's so ridiculously counter intuitive to allow this suffering. I've asked for surgeons to swab the empty cavity and tract with abx. They won't even though they admit very little oral abx gets absorbed to the rectum. So why not try it? Anyway (getting mad again). I'm going to send the surgeon an email tomorrow and cc my GI. I know he does surgery on Fridays, maybe he'll squeeze me in , but I doubt it. My other plan is to write an open letter to the CRS of Canada explaining my situation and maybe someone will be able to help me....Its so ridiculous that I can't get a fix here but if I drive 1.5 hrs south and into the States they try. A 40% chance of success is better than what I got now!!

Anyway--- anyone have advice regarding the job? Should I just quit before I start and try again in January??

And wondering if anyone has insight as to why my inflammation non existent yet I still have an abscess/

Thanks.

---

UC/Crohns - tested positive for MAP antibodies & mycobacterium
PG- remission
chronic fistulas. Failed setons...it was pure torture.
started Stelara May 24, 2017. Remission since! 150mg imuran
30 yrs IBD--started as parasites, then IBS, UC, PG, CD

Permanent port insertion 2019.

both parents had IBD. My advice: be selfless don't procreate with CD.

IVIG on occasion.

The inflammation markers are not perfectly correlated with the intestinal inflammation in your body. My two inflammation markers (C Reactive Protein and ESR) are always low for many years. But I believe there is insidious, slow but chronic inflammation in my small intestines. As for jobs, I live in USA, which means if I would be in trouble if I do not hold a job. So I am trying to hang on for as long as possible until I break down with some disability. I am hoping I can retire when I am 60.

---

Diagnosed of Crohn's Disease in 1994. Having been treated exclusively with Chinese herbs for 20 years. Currently not on any western medicine.

Hey good for you and I hope whatever they're paying you makes life slightly more comfortable.
I don't know if you have tried it but my other half had pain in his hip and lower back and found heat pads and a tens machine really helped.
Best of luck with the job.

Sometimes I just say 'retired'. Sometimes I say "medically retired'. Sometimes just to mess with strangers who have no business knowing anything about me.... "Independently wealthy". And sometimes I just smile and talk about my career as though it's still progressing normally and I'm enjoying the heck out of it. (I did.)
The possibilities are endless!!

---

Lynnwood, Dx: 2000, Found HW 2005, HW Lupus/Sjogren's Moderator May 2006-May 2018
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde