Crohns. Shift Work. UK

Hi I'm a newbie! Looking to share a bit of my story and see if any of my concerns are common, hoping to pick some advic up along the way!

I'm 27 and have been diagnosed with crohns for about two years (although my parents say in hindsight ive always had it) after symptoms of tiredness and diarrhea, a colonoscopy confirmed the diagnosis.
I was only after having a minor collision with a fox on my bycyle that any of the symptoms started up to that point I led a normal and very active lifestyle. Throughout my childhood I was prescribed a lot of steroids which I believe now kept the crohns hidden/at bay.

I work as a train guard over a variety of early and late shifts which I mostly really enjoy, however I don't think shift wok helps at all. After my most recent flare I visited occupational health on my return to work, the outcome of this was to try out doing only early shifts not the early/late pattern - this was a godsend I hadn't felt so well in ages! However the trial came to a end and I'm still waiting for a review of this 2 months on

From the outset I was prescribed Pentasa 4x500 mg twice a day. I stuck with thi for approxmetly 6 months but found myself to be exhausted - I would fall asleep at every opportunity! I reverted to half the dose when I felt okay and more when not so good. I have added fish oil supplements in a hope to improve my well being.

I have undergone one colonoscopy and two endoscopy's (I also have a hiatus hernia) and most recently a MRI. I have had two flares consisting of diarrhea, loose stools and loosing on troll of my bowles does this constitute me being a bad sufferer? I keep battling with the idea that I haven't for it bad, I've still not fully accepted I have a lifetime chronic illness if I'm honest..

My recent MRI confirmed I still have inflammation in my ileum so my doctor has recommended changing from Pentasa to Azathioprine to get the disease under control in order to prevent likely narrowing and possible later surgery. I am concerned to take such a powerfull drug when it seems so soon? I'll ask more questions in the relevant area.

I've booked in for my first ever acupuncture session next week so we shall see if this helps with reducing my stress which I see as a major trigger.
I'm engaged to marry next year and have a very supportive fiancée but am scared that I become a burden and that we can't have a happy healthy family.

Hello and welcome to the forum.

I work shift work also, and have our own business besides. The shift work does not help with the disease, but it is not good for perfectly healthy people either.

I have been on Azathioprine, and will probably be on it again. I have been putting it off because I just don't like this type of treatment. I did not have any problems with it, although some people do. I really could not tell I was taking anything. When I stopped taking it prior to surgery my face developed Seborrhea. That did not impress me too much, but it is a pretty minor thing in the scheme of things.

I don't know what you should do, or how you should treat the disease, but I do think you will need to treat it one way or another. That is kind of where I am at, and I have not made a decision either.

I guess we are both in the same boat. Let us know what you decide to do, and good luck.

Dan

Hi there and welcome

First off, you are NOT a burden (read that).

Second, as I was reading your story and hadn't gotten to the part about your doctor wanting to change you to azathioprine, I was cringing a bit. I say this because Pentasa really doesn't work that well for people with Crohn's. In fact, it's not even approved for use in Crohn's disease, only Ulcerative Colitis. Azathioprine on the other hand has some pretty good data to back its use. Yes, it's a powerful drug and yes there are some potential side effects which are scary, but as long as your doctor is smart about determining the correct dosage for you and monitors your blood work regularly, the chance of serious side effects are very low.

With that said, I'm a huge fan of the, "shotgun" approach to the treatment of Crohn's Disease. Hit it from all angles. Utilize the azathioprine, definitely go for acupuncture (great idea!), make dietary changes, etc etc. Do everything you can to get the disease under control.

And we're here to help you every step of the way.

All my best to you.

My story is pretty similar. I 1st noticed problems after a bump in a go-kart, I also work shifts (12hrs).

good luck with aza. With regards to work the NACC has a great info sheet on your right and how to help yourself (look in the uk forum for more details or google it .. or if stuck pm me)

i'd say the biggest impact ive had with the disease is my diet, carefully lookng at what i eat and how i feel has made a big difference (had to cut out coffee and tea at work but feel so much better for it). If you havent told everyone who you work with about the disease and what it means it would be best so people do understand what you are going through and dont label you as lazy etc

Crohn's is covered by the Disability Discrimination Act. This requires your employer to make reasonable adjustments. Sounds to me like working shifts that suit you is a reasonable adjustment.

Chase that review, get onto OH again and are you covered by a union?

I know it's hard to be pro-active when you're so sick, but it looks like no-one is in a hurry to help you and so sadly you must do the running.

Also have a look at Crohn's & Collitis UK website

If your work situation is good then that's one less hassle you have.

Thank you everyone for your replies

I've pretty much decided to give aza a go when I return to the hospital again. Although my main symptom is the tiredness which easily becomes exhaustion which may not sound to bad, it isn't normal! Certainly r someone who used to be so active. He MRI showed inflammation so I guess it's as much about what you can't see.

I had a good chat with the lady who I've booked in with for acupuncture next week. She has a number of Crohns succes stories

I'm a member of NACC and find there leaflets very usefull. Work are bein plain awkward (for a national company appalling behaviour IMO) I've been waiting for a meeting with HR my line manager and union rep since the end of September.. Mayb hey expect me to o away? No chance! Think they are just stalling.

Working shift work can be taxing on anyone not only people who have IBD. I think that you just have to learn how to make it work. I'm on the opposite side of the spectrum because I find working nights ( 7pm to 7am) is easier for me to deal with than days. But that is just me. Although now that I'm feeling better, I might give days a try again. I think diet plays a big role so you might want to test out what foods work for you.
As for the AZA, that is what I was started on right away after diagnosis and felt fine on it until I developed pancreatitis and that is a rare thing that happens so I wouldn't really worry about it as long as you have your blood work done regularly.
Also have they checked your B12 levels, that could definitely play a role in being tired all the time.

Hello and welcome to the forum!
The first thing that crossed my mind was your tiredness. How are your blood levels? Low iron levels can cause fatigue and anemia is a common problem among Crohn's patients. I don't know very much about the drugs you are trying, but I hope it brings you relief! I would love to hear how the acupuncture works, I have always been very curious about it so please let us know when you get it done!
Congrats on the engagement! I know how you feel about feeling like your a burden on your significant other, and I think (at least for me) its only the way you feel, as long as you keep an open line of communication about the way both of you are feeling then it can be a successful marriage and a happy family!

I agree with newbie and afidz. Fatigue, while potentially caused just by the disease, can also have other causes. Low vitamin B12 as newbie mentioned, anemia and afidz mentioned, dehydration, low vitamin D, and low magnesium (or a combination thereof) are common causes as well. All are worth getting checked.

I think you're making the right decision going on the azathioprine but continue to learn all you can about this disease so you can make educated decisions that work best for you. We're here to help you with that every step of the way.