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Crohn's Disease Forum » Support Forum » Vent Away » Why do I do this to myself?


07-03-2013, 03:13 PM   #1
Holly
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Why do I do this to myself?

A few weeks ago I was on holiday, it was the first day, and after a 5 hour car journey I started to have an ache in what I presumed is my Colon, and as the day progressed it got worse and worse and worse.
My walking speed was similar to a dying snail.
Pain was unbearable and we were in a small village about 15 minutes from our apartment, I came out of a shop and asked my boyfriend if we could head home as I was really in pain, we went outside to unchain the dog and she jumped at me, and clawed me, right... in.... my.... colon.
I yelped and burst into tears as the rush of increased pain took me my complete surprise. So there's me, crying in the middle of a village with people walking around us. My boyfriend told me to stop crying as it was embarrassing him.
and I hobbled home, in tears thinking I had ruined the entire holiday

(What I haven't told you is that a week prior to the holiday I had stopped taking my medication, yep. Stupid or what?)

Well, immediately when I got back to the holiday flat I took all my meds, but too little too late. I had to neck pain killers for the next four days in massive amounts to even slightly mask the pain.


It got better, and I felt amazing for a while, truly incredible

Well, here I am now, a month on, haven't taken my pills for a week and I am currently sat typing this on the brink of tears in the fetal position the pain has returned with a vengeance, and I have work tomorrow and it's a busy shift as the boss is off ill.

Why do I do it to myself?
Am I stupid?!
I really really must be.
If I could conjour up the strength to kick myself and slap myself silly I really would!
I clearly don't learn my lesson.

__________________
Holly xxx
-----------------------------------
Crohn's Disease

...of the Terminal Ileum/Rectum
Ileostomy
...5/11/2014
Diagnosed w/Crohns
...24/4/2012
Medication
Pentasa 4x1g
Azathioprine 125mg
Due to Start Humira

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07-03-2013, 04:44 PM   #2
Joonie
 
Join Date: May 2013
Location: Bolton, United Kingdom
How about setting yourself a time in the day to take your tablets? One set time, every single day and set yourself an alarm in your phone to remind yourself you must do it. Don't beat yourself up now - what is already done is done, but make sure you take your pills for today and get a hot water bottle and maybe some paracetamol (if you can take them) for the pain. I hope you feel better overnight.
__________________
Current meds:
Diagnosed pan crohns-colitis 2006
Mezavant xl -4 per day
Probiotic
Multiple vitamin
started 50mg Azathioprine May 2013
X 2 flares in 2013 needing Prednisolone
Nov 2013 - Doc considering escalation to Humira
07-03-2013, 04:45 PM   #3
CrohnsChicago
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Sorry you are in pain Holly

May I ask why you aren't taking your meds? Is it by choice or are you just forgetting to take them? Are you experiencing any other symptoms in addition to the pain?

I hope you are able to talk to your GI about this soon and come up with an alternative if you do not want to take your routine meds.

Feel better.
__________________
Crohn's-Colitis May 2012
Current Meds:
6-MP (100mg) / Asacol (4800mg)
Past Meds:
Prednisone/ Entocort / Flagyl
Current Supplements:
B12 Shot (1cc/mo) / Multivitamin / Vitamin D (1000iu) / Calcium (1200mg) / Omega 3 Fish Oil (4800mg)
Additional Info:
Anemia/Borderline Anemia - whole life
Generalized Anxiety Disorder - 2009 (Cognitive Behavioral Therapy, mindfulness meditation)

07-03-2013, 05:08 PM   #4
Cross-stitch gal
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It looks like you take some of your pills 4 times a day. I used to do that. Got to admit that it got a little hard to take all of them especially when I was on vacation. We got busy, slept in a little too late or other reasons. Sometimes you'll forget a dose. We're all human!

Joonie's idea of setting a certain time each day to take your meds is a great idea! Is there a way you can get a hold of your doctor to talk about this? It might not be a bad idea to admit that you have a hard time taking your meds. Sometimes they'll have other tricks or ideas as to remembering as well. Or, they might even discuss something different to make things easier on you.

I hope you'll be able to get this figured out and start feeling better soon. Take care!
__________________
Diagnosed:
Ulcerative Colitis/IBD 1996, Iritis 2001, Ulcerative Proctitis 2013, Indeterminate Colitis 2016, Remission 2017, Hand Eczema

Current Meds:
Pentasa 1000mg 2xday or Mesalamine DR 1.2gm 2xday, Canasa Suppositories (when needed) 1000mg 1xday, Tylenol 3 with codeine 300-30mg (when needed)

Non-Meds:
600+D Calcium 2xday, Multivitamin, 65mg Iron 1xday, Fish Oil 1000mg, Vitamin D3 5,000 I.U., Eye Drops 2xday


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07-03-2013, 07:37 PM   #5
Cykay
 
Join Date: Jul 2013
Location: Chattanooga, Tennessee

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I have had Crohn's for 20 years. I can't even count how many times I have done that. At one point I was taking 3 pills 3 times a day. I would start to feel better and stop meds, I would feel better for a while and then I would start to flare. Especially when you are younger, you don't want to have to be chained to meds all the time. Thankfully 3 years ago, I started Humira. 2 times a month. It has worked great for my crohns, but everyone is different. I hope you find meds and a regiment that works well for you early on in your crohns journey
07-04-2013, 03:08 PM   #6
Grumbletum
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Holly, I know it can feel like a real pain to take these meds, but clearly they are having a positive effect when you take them. What concerns me a bit about your post is the stopping and starting of the meds. It can take up to 3 months for Azathioprine to become therapeutic and if you start/stop it, your going to have to keep building up you're levels again. Also, as you gradually increase your dose when you start it, you're also better to wean gradually off it, so suddenly stopping it can be quite dangerous.
Setting a time to take your meds is a great idea. Getting one of those pill boxes with the days of the weeks and sections on can help too.
OK, lecture over :-( !! I hope you're feeling better really soon.
__________________
Dx Crohn's terminal ileum April 2011
Ileocaecal resection & partial cystectomy Sept 2012
3.5 years happy remission, in mild flare since Feb 2016 with related Portal Vein Thrombosis

Previous: Prednisolone, Mesren, Omeprazole, Infliximab, Azathioprine
Current: Pentasa, Librax, Warfarin
Helen x
07-05-2013, 02:18 PM   #7
Holly
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Thanks everyone
I will try my hardest I just forget to be perfectly honest and it's such an important thing to just 'forget'
Setting an alarm might be a good idea
xxxx
07-05-2013, 02:25 PM   #8
CrohnsChicago
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I see you are on Pentasa and Aza.

I take 6-MP which is similar to aza. I make sure it is the first thing I do when I wake up. And if I am traveling somewhere, I bring a travel container of my medication to make sure I have enough to take when I wake up in the morning while on vacation or wherever I am.

I also take Asacol so I understand why you might forget to take your Pentasa.
I typically take my Asacol each day when I first wake up (along with the 6-mp), during my lunch hour in the afternoon, and after dinner/before bedtime.

I occasionally forget my Asacol as well. It's easier for me to forget my afternoon dosage because it is the middle of the day and I am busy/occupied with other things. I do set an alarm on my phone for 2:00pm every day to take my Asacol.

Definitely identifying your daily habits and setting your medication dosages around that would be very helpful. The alarm is definitely a good way to get you into a habit. Good luck!
07-09-2013, 03:13 PM   #9
Novice
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I've done things look me that a lot it's easy to forget when you start to feel better sometimes its denial and oretending im not sick lol I bought myself a pill box that comes apart so I can carry each days pills in my bag its got 3 sections morning afternoon and night. Im finding it easier to take them that way and I only fill it up once a week and I never forget now when im due a repeat prescription lol.

we like to learn the hard way lol hope you feel better soon
07-09-2013, 03:34 PM   #10
alex_chris
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Thanks everyone
I will try my hardest I just forget to be perfectly honest and it's such an important thing to just 'forget'
Setting an alarm might be a good idea
xxxx
For me things work by just combining taking the meds with something I have to do everyday anyway... Brushing my teeth in the morning and the evening. I normally don't miss taking anything (5 pills in the morning, 3 in the evening).
__________________
-----
Crohn's diagnosed in 1999
On Aza from 2003 to 2008 and from 2010 again until Today
60cm of smaller intestine removed in 2003
Vitamin therapy with D3, B6, B12, magnesium, zinc, folic acid for years
Iron therapy with Tardyferron 80mgx2 and Loesferron 80mg for years
Yoga, running, freeletics on the sport side!
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