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inflammatory markers

Chronic Illness Forums
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Crohn's Disease
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U B Tough
Veteran Member
Joined : Aug 2015
Posts : 1088
Posted 10/18/2019 10:13 AM (GMT -7)
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.
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Delta_hippo
New Member
Joined : Jun 2019
Posts : 9
Posted 10/19/2019 12:05 PM (GMT -7)
Just wanted to say good luck with the new job. I understand the feel crap/ need to earn money problem.

I think I read on one of the forums about oregano oil helping with abscesses/ fistulas - did sod all for my crohns but hard to think of much else that might try help.

Were you thinking about the quebeco (might have spelt that wrong) trial at one point, is it worth reconsidering if stem cells not happening?
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U B Tough
Veteran Member
Joined : Aug 2015
Posts : 1088
Posted 10/20/2019 9:31 AM (GMT -7)
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.
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Delta_hippo
New Member
Joined : Jun 2019
Posts : 9
Posted 10/23/2019 1:47 PM (GMT -7)
Can't help with the *** abcess but no inflammation I'm afraid. But in terms of the job, I would say go for it. At the end of the day you're trying to get some cash and the other benefits of working not impress someone by giving 100% attendance when they have got a million other things on their mind anyway. I used to be a manager and you basically just want people to turn up when they say they will, do the job and not cause problems. So as long as you are upfront about having a preplanned surgery, date tbc (unless you get hold of the surgeon and they give you a date, which would be a bonus), I can't see an issue. I've recruited loads of people who have got prebooked leave, life happens.
If you get onto the Qu biologics, I suppose there's a hope your freshly rebooted immune system will reduce risk of more abscesses by killing bugs more efficiently? How nice would that be.

In terms of the oregano oil, maybe worth following with a round of probiotics, my GI recommended vsl3 (or its slightly cheaper identical twin vivomixx), expensive but helpful is my experience.

Tears and rage - I feel you - been there many times. One lesson I have learned the hard way through this disease is that life is unpredictable and the future uncertain, so make the most of today.

Good luck with the job.
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EruditePaul
Regular Member
Joined : Jan 2006
Posts : 477
Posted 10/23/2019 3:29 PM (GMT -7)
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.
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U B Tough
Veteran Member
Joined : Aug 2015
Posts : 1088
Posted 10/29/2019 4:44 AM (GMT -7)
I wish it was only a matter of surgery that has me anxious about rejoining the work force. It’s never that easy with crohns. Regardless, I started working. It has turned out to be extremely physically demanding for me especially with my joints being awful & meds & simply not havjbg the stamina. My employer does not know I’m sick. I have no idea how to handle the time off needed for treatments & side effects, but I’ll have too. Going to continue as long as I can but it’s definitely a very taxing situation.

Paul; I’ve pretty much been retired my adult life with only a few years of workingsad. Too many long term hospitalizations , home care etc to count. It used to really bother me (self esteem, self worth) but since the fistulas that’s changed and I’ve more or less accepted my employment circumstances. At least I’ve got degrees so I’m proud of myself for that.

I do love telling new people I meet that I’m retired though. I say it with a massive smile & watch their shocked faces as I’m not old enough to reach retirement agesmile. It’s rather fun.

Thank you both for the wishes. I’ll look for more suitable employment although I have no idea what that would be.
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.
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Delta_hippo
New Member
Joined : Jun 2019
Posts : 9
Posted 10/30/2019 12:59 PM (GMT -7)
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.
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exit 4
Regular Member
Joined : Apr 2009
Posts : 156
Posted 11/20/2019 9:49 PM (GMT -7)
I too have a fistula now for 5 years and my inflammation markers are fine. I do also tell people that I’m in early retirement. I am on SSDI - because of Crohn's, and actually got it pretty fast the first time I applied. Draining fistula and all the "fun" dealing with it did the trick. Someone told me (and I did) describe your worst day in the SSDI application. All the draining, changing pads, leaking issues, sits baths multiple times per day, unable to sit due to rectal pain. Unable to drive when in a flare, bedroom bound, pain, etc. Give it a try. All the best to you!
Life is not about waiting for the storm to pass, its about learning how to dance in the rain.
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Lynnwood
Veteran Member
Joined : May 2005
Posts : 7930
Posted 11/21/2019 4:00 PM (GMT -7)
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
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