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01-25-2014, 10:48 AM   #1
JM1
 
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Healthcare Workers with Crohn's/IBD Support Group

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Support group for healthcare professionals with Crohn's/IBD. Hopefully this can serve as a forum for those of us dealing with IBD in our personal lives and the special demands of our career's. All of us have various coping mechanisms we use on a daily basis to overcome our illness and, hopefully by sharing our experiences, we can incorporate successful mechanisms into our daily routines while sharing these coping strategies with our patients and loved ones.

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01-29-2014, 10:02 AM   #2
JM1
 
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Dealing with the long, irregular hours/shifts in medicine is a challenge. Trying to establish a routine is almost impossible and the fatigue and frequent ( urgent) needs for bathroom breaks can be debilitating. While most employers can make accommodations, health care is somewhat different in that when we are engaged in taking care of a patient it can be extremely difficult to say time out. What coping strategies have you developed in working around the challenges of IBD?
01-29-2014, 10:29 AM   #3
wondering
 
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I've been fairly lucky in that my disease was at its worst before I started clinical rotations so I could manage ok although did take some time off. Luckily my disease has been well controlled since although I'm concerned that I'm having my first flare in awhile. I struggle with figuring out who to tell. I find that even though we take care of sick patients, the mentality in the field of medicine is to suck it up and not take sick days. I think that's something I also find challenging is figuring out when to call out. For example, last night I was up sick for part of the night and am still queasy. I ended up going in as I'm not contagious sick and me calling out would create a lot of work for others.
__________________
Crohn's of the terminal ileum:
Diagnosed 5/2007
In remission for about 5 years and counting!

Current meds:
Pentasa
Iron
Vitamin D

Past meds:
Pentasa
Prednisone
Remicade
Azathioprine
01-29-2014, 12:26 PM   #4
JM1
 
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I, for one, have faced the same issues although call for me required in house coverage. Calling in sick really put a burden on my colleagues, so I had tired as much as possible to "suck it up" like many of us. Realization was slow to set in that I wasn't doing myself or my patients any favors, and was very likely contributing to my less than optimum health. In the back of mind was the thought that if I wasn't 100% then how could I deliver the best care possible to my patients.


DX 1996
5 bowel resections and balloon dilatation of stricture . anastomotic leak requiring re- exploration
recurrent incisional hernias. Seroma
Crohn's related EIM; Lap Chole 2011, Renal stones, Fissures, Arthralgia and arthritis.

Current Meds:

Cimzia
Azathioprine
Imodium
Colestid
B12
Protonix
Tramadol
Zofran
Vit D2

Previous meds:
remicade
prednisone
Entocort
6 MP
Asacol
Pentasa
Flagyl
01-29-2014, 11:14 PM   #5
Nicole86
 
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Thanks for starting this forum. Medicine is certainly demanding and though our colleagues should be the most sensitive and aware about the impacts of IBD, we are also pressured as doctors, nurses, etc, to somehow be superhuman and work impossible hours with poor self care.

I am still in my training and although it is difficult, I find that the best policy is to be open about my diagnosis with supervisors. It is awkward and I too worry about burdening my colleagues. Sleep is incredibly important in regulating my symptoms and yet I have still not requested accommodations for call, partly because I don't want the stigma and pressure of burdening my colleagues. You're right that at the end of the day, what use is it to put others' needs before our own when we'll end up less helpful and healthy in the process!

I'm having a moderate flare currently for the first time since 2010 and I think I'll have to be more open with colleagues. I have a strong urge to minimize my symptoms and try to hide it from colleagues, but that just makes me feel worse, like I'm keeping a shameful secret.

It may be difficult to negotiate, but ultimately your health comes first. Nothing is more important. And you may love your job and colleagues, but you're compromising both if you're neglecting your health when it's most important. This is what I try to remind myself.

More than call, right now I'm concerned about an upcoming grand rounds I am scheduled to present. This is probably my biggest current stressor and I'm wondering if it would be appropriate to reschedule to a time when I'm in less distress. What to do?
01-30-2014, 01:12 AM   #6
kristihelene
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Do any of you work with the same patients for extended periods of time (eg home health, LTC facilities, OP practice?) I work in pediatric home health, and had to take off starting the week before Thanksgiving for surgery and kept postponing my return as I ended up with complications then a flare that put me inpatient around Christmas. When Jan 1 hit, I went on long term medical leave because I couldn't justify continuing to string my patients along. Also, there are soooo many sporadic days I have to call off and again feel like it's totally unfair to my patients to lack continuity of care...


__________________
~Kristi~

Crohn's :: 2007

Current Status: Lots of pain and not unable to work
Surgeries:
* 2007 & 2011 ~ Open Small bowel resections
* 2013 & 2014 ~ adhesion lyses and endometriosis cauterization

Current IBD Tx:
* Remicade IV every 6 wks
* Methotrexate injections weekly
* Zofran before every meal and bed
* Vit B-12 injections monthly

Because having Crohn's isn't enough...
Dx: Inflammatory Arthritis, Migraines, Endometriosis, Excessive Daytime Sleepiness, & Fibromyalgia
01-30-2014, 09:09 AM   #7
JM1
 
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It must be very difficult for you especially since you are dealing with a pediatric population. I can appreciate the difficult situation and the frustration of not being able to provide continuity of care in this setting and also the frustration of dealing with Crohn's. Has Remicade and methotrexate offered any relief? Have you had any issues with recurring infections or increased susceptibility to infections, especially since you are dealing with pecs.? I hope your health has stabilized and improved since you are taking some time to recoup. Although it is difficult, sometimes we just have to step back and put ourselves first in line for healthcare.
01-30-2014, 09:31 AM   #8
wondering
 
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On a positive note, there definitely are some things that are easier being a healthcare provider than it might be in other fields. When I do tell people that I have crohn's, I don't have to try to explain it. Also, since my doctor is at the hospital where I work, he lets me email him directly rather than going through the office staff.

One of the bigger concerns I have is the infection risk working in a hospital and being on immunosuppressants. I'm in a field that has a decent TB exposure risk and while I am not currently on Remicade or humira, if I flare those would probably be the next steps...
02-03-2014, 10:35 AM   #9
JM1
 
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Has you GI discussed the risks of caring for patients that are on isolation-i.e. patients that have MRE, MRSA, c diff, VRE etc and the risks to you that exist with immunosuppressant therapy? TB is the most talked about especially with the emergency of multi drug resistant strains(MDR TB) however, the risk of taking care of those patients with other infectious agents should also be part of the discussion. Has anyone else discussed these risks with their PCP or GI?
03-11-2014, 12:33 PM   #10
jdpar
I find it ironic that even though I work in healthcare (I'm a nurse at a multi-speciality doctor's office), and my boss is a nurse, they still don't understand very well when I have to call in sick to work. I often get the "you don't look very sick" from my boss and co-workers. I don't think that Crohn's is well understood by others, even if they are in the medical field. My boss and another co-worker have had breast cancer. Now I'm not trying to compair my Crohn's to any kind of cancer. But people understand cancer more and look at it like a very serious issue. Whereas no one really understands my pain and other symptoms from my Crohn's. I shouldn't complain though, because I've been very lucky to be able to keep my job after all my absences from being sick and being in the hospital 4 times since December.
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Jen
03-11-2014, 01:21 PM   #11
monkey
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I love this thread!!
I work in outpatients, so see a whole bunch of people coming through the doors, when I've been on immune- supressants I've been sick loads, my colleagues have been good, in not making me see people we know may be an infection risk etc
Its great if your colleagues understand and you don't have to explain it, sadly my colleagues don't really understand whats going on and will often ask if I'm eating the right things etc...

I do find it really helps to understand my patients better though, having a chronic condition makes me totally 'get' what the patients are going through and understand some of the emotions involved much better than other people!!
__________________
Gail
Crohns or UC, who knows... Been indeterminate for 12 years!!
03-17-2014, 12:36 AM   #12
yosemitegirl
 
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jdpar... I can guarantee that co-workers and management don't understand usually. It's a luxury when they do. And worse, if management wants to lean on you for your attendance record alone, with no compassion, they will unkindly show you the door. Happened to me after decades working at the same place. It became a hostile work environment. Yep... that was upsetting on top of being so sick.

Hopefully, things settle down for you and it won't turn out like that.

As if Crohn's weren't bad enough all by itself. People can dig the hole a little deeper. I was stunned by that... I no longer am.

Take care... Michele Lea
03-24-2014, 03:06 PM   #13
valleysangel92
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I'm not a health care worker as yet, but I have a place for a nursing degree (specialising in peads) as of september, provided that things are all under control and I pass the health checks , so I thought I'd join and see if I can pick up some tips for dealing with the long hours and stress of being a student nurse. I know my university lecturers will be understanding ( I've been there before, they are ultra supportive and very caring) but not sure what to expect from placements. I appreciate any tips. .
__________________


Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
03-24-2014, 03:44 PM   #14
yosemitegirl
 
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Valleysangel92... You already know the most important issues such as absences and fatigue. Hopefully, you will continue to receive understanding and support.

On the job, bathroom issues a big problem for me, having had 10 surgeries in the 45 years with Crohn's. Used different meds to reduce this problem, but ultimately my best choice was working every other day to get a break. No 12 hour days either, impossible.

Each of us has many variabilities in our lives. Having had Crohn's for so long I have come to an understanding and acceptance about my limits. I never give up, but I know when to give in to its' demands. You will, too.

Best wishes to you... Michele Lea
04-15-2014, 08:42 PM   #15
kristihelene
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Cool story Id like to share: my husband earned an award through his job and the ceremony was in Punta Cana for the employees and their spouses, all expenses paid for a few days! Anyway, my CD has been really bad so I have been off since Nov and missing working w/my patients. I was looking forward to a few days of relaxing, and was settled in for the 6 hr flight. Suddenly the flight attendants asked for someone who could provide medical assistance emergency! I was the only one to step forward, and came to a passenger who had been so dizzy he passed out into his chair and soiled himself. Long story short, I got to jump back into my medical role, treated the man with what they had available on the plane, organized the ground EMTs, and helped him feel a lot less embarrassed and scared!! I was so thankful I was there to help him! The airline was thankful too, and gave me a $200 voucher for a future flight! Crohn's or no crohn's I was still able to help!!!!


05-17-2014, 09:58 AM   #16
JM1
 
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Crohn's doesn't diminish the person that you are, if anything, it enables you to be more empathetic in your role as care giver. That passenger was lucky you were aboard the flight
05-17-2014, 10:19 PM   #17
skylardaisy
 
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I don't know what to do. I am a nurse and have been working a .4 eft for the past year. Previous to that I had taken early retirement because of CD. I had a small bowel resection in 2012 and was feeling a lot better so decided to go back to nursing part time. I work in a personal care home.
Fast forward to the present. My symptoms are coming back-lots of D, extreme fatigue and joint pain. Sometimes I think I'm also having brain fog. I'm on Remicade and am having an MRI this week to see if the disease has reared it's ugly head again. I'm so discouraged at work, spend a lot of time just catching up with what has gone on with my patients since my last days off. Yesterday, my manager put out a general memo stating that "some nurses" weren't pulling their weight and a low eft was no excuse. I feel that this was directed at me and am really offended. I do my best and don't use my CD as an excuse for anything. Now I'm wondering if I should just quit. Do I really need this in my life ? I have a pension but it was hard to make ends meet before I went back to work. I am willing to make sacrifices to be able to retire completely.
Any advice would be appreciated. Thanks.
05-18-2014, 09:56 AM   #18
JM1
 
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CD isn't an excuse - it can and does have a major impact on one's life. Finding ways to adapt and overcome seems to be the undercurrent of daily living for those dealing with Crohn's and UC. Working in healthcare is highly stressful and physically demanding. Swing shifts, lack of sleep and heavy workloads can wear down even those without the added burden of a chronic illness.
You seem to have already addressed the issue and are asking yourself the right questions-do you need this stressor in your life and what impact is it having on your well being? If you are not taking care of yourself, are you able to fully care for those at work? Are there other options for you to remain in healthcare but not in a direct patient care role once you are feeling better? If you can't get into remission or are having frequent flairs is there a Canadian Government support system in place that could assist you financially? Can you put your experience to work in other avenues to help patient's and their families? For what it is worth, the most important thing you can do is to first care for yourself: talk with your GI and Primary Care giver and get the answers you need from the healthcare perspective.
Best wishes and please keep us updated on your progress
05-18-2014, 12:55 PM   #19
skylardaisy
 
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Thanks so much for your thoughtful reply. You are so right when you say that we have to look after ourselves before we can take care of others. I just wish that other people realized how devastating this disease can be.
I am going to speak with my doctor and my banker (lol) and then make a decision. I will keep you posted. Take care.
05-18-2014, 07:34 PM   #20
Trysha
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Very sad to see you are being treated with less than compassion.
Surely they should be able to give you a place in the office which will use your knowledge.
Feel better soon
Prayers and best wishes
Trysha
05-19-2014, 02:57 PM   #21
Saratay05
 
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Skylardaisy and JM1:

Thank you for putting into words how I've been feeling. And feeling very guilty feeling the way I do, like somehow it's selfish of me to want to take care of myself for a change.

I work in a dental office and if I am having a bad day I can't exactly stop in the middle of a procedure which would put a halt to the doctor's work and upsets the schedule. And then there is feeling I have to explain myself, while the last thing I want is to draw more attention than absolutely necessary. I know it's probably not as stressful as nursing, but as you are aware, it's very difficult to put on a happy face and care for others when you feel lousy or worse.

I am very lucky in that my boss is very understanding, but I feel now that I can no longer be effective, as well as it puts a lot of stress on other coworkers to help me out more than they should have to. After much soul searching and encouragement from my husband, I put in my notice and have decided to retire after I train my replacement.

I now agree that my health has to come first. This was a huge shift for me, from always doing my utmost for my patients even if it was detrimental for my health. It will be a bit of a strain (we have 4 kids going to be in college in the fall) but nothing is worth sacrificing my health or future quality of life.

Good luck in your decision Skylardaisy. Sending hugs your way.
__________________
Currently: hoping this is remission
Diagnosed with Crohn's 2012 after two bowel resections, one involving a perforation and peritonitis.
Currently taking:
Entyvio
Imuran
Omeprasole
05-20-2014, 07:13 PM   #22
JM1
 
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Every job, especially in healthcare, has it's own set of unique stressors. Having the support at home is key in helping you through a difficult decision and it sounds like you have a very understanding and compassionate husband.
Having four kids in college at the same time is tough, and I am sure a financial strain, but giving yourself the opportunity to be at your best physically and mentally for their graduations and future endeavors is a priceless gift that you are giving to yourself and your family. Best wishes
05-20-2014, 07:44 PM   #23
skylardaisy
 
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Saratay05, I applaud you ! Good for you to have the courage to put your health and wellbeing first. As JM1 said, you are giving your family the gift of a healthy wife and mother and that is indeed priceless. Best of luck !
As for me, I am still waffling but I definitely know that I have to make some changes.
05-30-2014, 02:06 PM   #24
skylardaisy
 
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Has anyone been diagnosed with a thickened ureter ? I had an MRI last week for my CD and while there are no big changes there, apparently this thickened ureter showed up. It could be from infection or stones but now I have to undergo more testing. Feel like I can't catch a break !
06-16-2014, 03:13 PM   #25
Saratay05
 
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Has anyone been diagnosed with a thickened ureter ? I had an MRI last week for my CD and while there are no big changes there, apparently this thickened ureter showed up. It could be from infection or stones but now I have to undergo more testing. Feel like I can't catch a break !
I have not had that issue. Any new developments from your testing? Hope it's only minor and you're doing better now.
06-16-2014, 04:15 PM   #26
skylardaisy
 
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Hi Saratay05,
Thanks for your reply. I've had a urine for culture and sensitivity done which I'm assuming was negative. I took in 3 urine specimens for cytology last week and haven't heard anything back yet. Am now waiting for a date for a CT scan. I'm a little nervous about it and will be glad to have it resolved. Will keep you updated. My GI doc said it could possibly be related to my CD, which I didn't know before. Thanks again.
06-21-2014, 05:54 AM   #27
Guest18
 
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..

Last edited by Guest18; 04-01-2015 at 06:35 AM.
06-27-2014, 03:31 PM   #28
littlemissh
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I think it is also helpful when patients see that you too are human.
The looks I get off patients when they walk in and see me with an NJ tube are priceless.
A few ask, and a few comment on how impressed they are that I am still at work.
Some have even gone up to other staff to ask if I am ok!!
__________________
Diagnosed Crohns small bowel 2010,Gastroduodenal crohn's Jan 2012. Gastroparesis june 2014.
Duodenal perforation/peritonitis nov 2011. Portacath placed Nov 2013. Gastric pacemaker 2015.
Perforated jejenum/peritonitis oct 2015, PEJ for enteral feeding nov 2015

On Humira every 7 days, intermittent iv iron, regular blood transfusions :faint:
On TPN since March 2016.
07-25-2014, 03:20 PM   #29
JrPsychologist
 
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I have very recently been diagnosed with Crohn's Disease and am still trying to get my head around it all. I'm relieved to have an explanation for the crippling symptoms I've been suffering with but I would be lying if I said I wasn't overwhelmed and frankly a little scared by my diagnosis.
I work in a mental health hospital and am quite nervous about telling my employers. I have not been in my job very long and have already had to had time off due to ill health. Like any healthcare setting it requires a certain am
07-25-2014, 03:29 PM   #30
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*amount of physical, mental, and emotional strength which I feel I currently lack. I am wondering if this is where I should be working? I don't want to feel like a quitter when I have barely experienced the disease in ways so many of you have and are still working in a similar setting. I feel I am constantly stressed and have such a high level of anxiety. I'm sorry to complain when everybody seems to be coping so well! I just feel I need some advice on how to approach my job and employers? Any advice will be greatly appreciated!
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