Crohn's Disease Forum » Support Forum » Vent Away » How do you manage? Honestly?

12-09-2013, 10:23 PM   #1
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How do you manage? Honestly?

Hello again,

Just need to vent away. Was diagnosed with crohns 8 weeks ago. Did a round of pred and found the side effects extremely difficult. Coming off the pred was also difficult, I had what seemed to be a minor flare in the first week off. A follow up calprotectin test a couple of weeks later showed no inflammation which i was relieved to hear.

Dr is keeping me on pentasa for now as it appears to be working. I have read everywhere that it isn't effective but I am happy to stay on it until it proves to me it doesn't work, as I am scared of the immunomodulators. I am still having joint pain but is thankfully calming down now, however my eyes are giving me trouble so I need to see an eye dr this week to make sure everything is ok.

In between all of this, I have been trying to do a phd. I am way behind, and my supervisors are pushing for me to get on top of it again. I just feel like I can't do it anymore. I want christmas holidays as I was meant to have them, however they are now saying i need to work over them. I don't think I can do it anymore, my supervisors are difficult, I want to have a baby while I am well and in remission and I have finally been given the go ahead (I have been ill for a very long time, so I have kept putting it off). I don't know what to do, and I feel like I should be able to do everything (manage crohns, have a baby, do a phd) I just don't think I can, and I don't think I want to, but I am finding it difficult to make the decision to stop my phd.

How to people manage crohns with work or study? I don't know how to manage this disease, let alone everything else in my life. I have been seeing a counsellor, but maybe I need to see someone who specialises in chronic illness

Feeling overwhelmed
12-09-2013, 11:19 PM   #2
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Trysha's Avatar
Join Date: Aug 2009

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Sorry to hear you are so stressed out.
Kudos to you for seeking the professional help of a counsellor.
It is good that you seem to be responding to treatment but the eye problem may be part of your Crohn's.
It is early days since your initial diagnosis, which comes as a shock to all of us.
Crohn's may go away for a time but being a chronic disorder can rear its ugly head when we least expect it.
So it is something we have to learn to live with, but try not to let it rule our lives.\Sometimes easier said than done.
It can be overwhelming at first until we sort out the priorities of our lives.
You have several major ones....PhD, babies, managing Crohn's----all tall orders.
Incidentally you listed crohn's management, baby, before the PhD, which suggests you would prefer to start a family once the Crohn's is taken care of....
Are you close to the finish line for the PhD/
If so perhaps you could retrieve your studies and finish it.Your supervisors may have your best interests at heart, only you can make the decision to continue.It has been reported that
pregnancy sometimes causes temporary remission for some people until after giving birth.
Your GI is responsible for Crohn's management and will advise and prescribe accordingly.
I am sure there will be others along to help with their experiences---people do continue studies and life in general-----life always goes on with or without us., must not let it pass us by.
We have to pick ourselves up and keep on going, not always easy by any means.
Feel better soon
Hugs and best wishes
12-10-2013, 12:04 AM   #3
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Thanks so much Trysha for your response, I think that was what I needed. I have been doing a lot of thinking lately, and I want to make some positive changes in my life as it's been a hard year anyway (even without this diagnosis) so I need to make some changes.
I have been given the go ahead by the dr's to start a family, so that is now my priority as my dear patient husband has been waiting for me to be ready (as you picked up in my post). I am technically in remission (although I still have pain, they are not picking up inflammation anymore) so now is the time.
I am only 1/3 way through my studies, so I still have a long way to go (min 2 years full-time) so I have a lot of work still to do. Perhaps instead of throwing in the towel re study, I should make some changes to my study arrangements (eg, part time workload) so it is more manageable. Maybe I can have the best of all 3?
12-10-2013, 12:07 AM   #4
Rocking on
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Join Date: Nov 2013
Location: Alexandria, Minnesota
I was you 16 years ago man. Day by day is all you can do. You have to adjust your life around it. Once you accept that, it gets a little easier. Wishing you the best.
12-10-2013, 07:56 AM   #5
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MissCadenza's Avatar
Join Date: Sep 2013
Location: Feltham, United Kingdom
Don't feel like you have to do everything - I made that mistake and as a result knackered myself out when all I really should have been doing was resting.

Your health comes first now, unfortunately, and I would suggest that you focus on that and only tackle other things when you feel ready.

Me personally, I went back to work too soon but coped by doing shorter days and literally not doing anything else for a few weeks until I felt physically and mentally able to cope. I am doing full days at work now, but as soon as someone mentions the 'overtime' word I'm like, no, because I physically can't. My day starts at 7.30 and by 3.30, when I finish, I'm knackered.

Don't feel like you need to jump in head first and do everything you used to before you got sick. It's not worth risking damaging your health. Work around your health needs and things will get easier
'You have to like the present. If not, your life becomes second-hand, if you think it was better before. Or that it will be better in the future.' - Karl Lagerfeld
12-10-2013, 09:29 AM   #6
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Hey there,

I take my hat off to you for all you have already accomplished. I will say that I agree with Miss Cadenza. I would not do overtime at all. You do not want to push yourself. My best friend is a teacher and she has lots of health issues and low immune system from being chronically ill. Being a teacher is so difficult, she worked long hours everyday. She pushed herself so much that her immune system just plummeted and she now has to be on disability. Please do not push the envelope to much. Your body will let you in the end if you are doing too much. Take care and take it one step at a time. But always put your health first...
12-10-2013, 10:08 AM   #7
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hi ya, being nebby what are you studying?
I'm currently studying for a maths degree, and when I was diagnosed with IBD the stress and crohns went sky high. In the end I found out it wasnt worth the hassle. I couldnt do my best so was only just passing (and failed one module) so I took 2yrs out to get better.

I've just started back up and told the uni about my problems and they have been great by giving me more time to study and also extra time in exams to go to the toilet.

You really need to think what is important in life. Your family, degree or health? This doesnt mean you can do all, but it is important you prioritise these
Current Meds:
2x 1200mg Mezavant, 3x50mg Azathioprine, Infliximab (6 weekly)
12-10-2013, 02:22 PM   #8
Join Date: May 2013
Location: Bolton, United Kingdom
Hi there, I think everyone is giving good advice above. I work full time and have recently been studying for a work related qualification and I won't lie - it's been very hard and sometimes I do feel like I'm totally exhausted BUT if you can reduce your hours, and it is a possibility, it may make your plans seem more manageable if you take this option rather than feeling overwhelmed.
Also I got pregnant and had my daughter whilst I was diagnosed with crohns a few years ago. I was only taking Asacol everyday no other medicines at that time, and my crohns calmed right down whilst I was pregnant and it was the closest I've come to any period of remission ( if only I could have a baby every year to get a remission ;-) good luck x
Current meds:
Diagnosed pan crohns-colitis 2006
Mezavant xl -4 per day
Multiple vitamin
started 50mg Azathioprine May 2013
X 2 flares in 2013 needing Prednisolone
Nov 2013 - Doc considering escalation to Humira
12-11-2013, 08:02 PM   #9
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Thanks everyone for your responses. I have a meeting today with my supervisors to try and come to some sort of arrangement. Fingers crossed.
12-17-2013, 01:47 PM   #10
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mccindy's Avatar
Join Date: Apr 2013
Location: Wisconsin

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Best of luck, SammyD. Remember that stress can irritate your Crohn's, and also can make it difficullt for you to get pregnant, so work on the stress part first! Stay calm, get your studies in order, and then relax. Try to enjoy the holidays and the process of trying to get pregnant! As the practice is the fun part!

current diagnosis is undiagnosed (possible Celiac disease)

Colonoscopy done August 2013, no evidence of Crohn's seen, biopsies done and one polyp removed.
Polyp is precancerous adenoma

(Diagnosed with a diffuse astrocytoma (brain tumor) 5/31/13.
Craniotomy with tumor resection performed July 2013. 99% of WHO grade II diffuse astrocytoma removed, MRI scheduled every 6 months to monitor for regrowth.)

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