Crohn's Disease Forum » Your Story » Going on 12th yr with Crohn's

02-24-2014, 02:34 PM   #1
Join Date: Feb 2014

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Going on 12th yr with Crohn's

Hello! 23 yr old here soon going on my 12th yr with Crohn's. I was diagnosed at the age of 12. I took asacol for 2 years and after the stomach aches really died down I got off it and didn't treat it until I was 21. I have been on Humira for about 2 years this coming June. First colonoscopy after ignoring the disease for 8 ish yrs in 2012 showed level of severe. Would not have really known this because either my symptoms are not so terrible or I have got used to the pain. Had a recent colonoscopy november of 2013 and level was moderate to severe so the Humira doesn't seem to be helping. Although a UCLA doctor performed the first in 2012 and a UCSF doctor performed the 2013 one. Looks like I have a lot of scaring and ulcers. I increased my humira dosage from biweekly to weekly and have now as of 2/20 started on 12.5mg/week of methotrexate. I really am not liking the side effects of methotrexate. I regularly exercise and am pretty active. I do hot yoga and am training for running in a race currently. I have not been able to do much but sleep and have had a pounding headache since day 1. It has really lowered my patience and mood. I obvioulsy want my disease to get better and avoid surgery but its just so difficult when I don't feel like my symptoms are really all that bad & I've never had to be hospitalized.. yet. I have had a history of anemia but have had that under control for a bit. There also seems complications with alcohol and methotrexate although my doctor never talked about this directly with me.. which is odd considering my age because I do go out to bars atleast a couple times a month so I am not entirely sure how to handle that part & nervous of another issue arising. Anyways I am very motivated gal and work hard. I am headed to graduate school this fall for engineering and boy do I need my head on straight for that and am a little nervous what will be happening now that I have started the methotrexate! I definitely need all the energy I can get as I am sure we all do. I'm glad I joined this forum I have enjoyed reading some of the other threads so far!
02-24-2014, 02:41 PM   #2
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DJW's Avatar
Join Date: Jul 2013
Location: Ontario

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Hi and welcome.
Crohn's Disease
DX 1978 (12 yrs old)
Ileostomy at 19

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Living in Ontario with no drug benefits?

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02-24-2014, 04:33 PM   #3
valleysangel92's Avatar
Join Date: Dec 2012
Location: United Kingdom

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Hello, welcome to the forum! I'm sorry to hear of your struggles, have you spoken to your GI about the side effects you are experiencing? They may be able to help by altering your dose slightly or by giving you tips on how to deal with the fatigue.

Some people do find that the side effects will start to wear off after a few weeks, when their body has gotten used to being on the medication. It is important to remember that being sick can also be exhausting, so it is important not to over do things when your body is telling you to rest.

If you would like more information about crohns treatments or would like to get some advice on the side effects you can find that here .
We also have a support group for extreme fatigue which you may find useful.

Please also check out the young adult support group where you can find lots of support and advice about things like studying with crohns and dealing with other students.

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

Meds- Vedolizumab, pentasa, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns:

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
02-24-2014, 04:36 PM   #4
Senior Member
pink&green's Avatar
Hello and to the forum.
Hubby Diagnosed 12/15/90
1/3 colon removed
12 inches of small intestine removed
Appendix removed
2007 Hemorrhoids removed
2006 resection:
2005 first perianal fistula(removed 3x & lanced still keep coming back)
2014 partial nephrectomy (stage1)
Previously medications:Humira-anaphylaxis reaction, Remicade, Cimzia, Entyvio
Current medications:
B-12, 6mp, flagyl, prednisone,
Tramadol(fistula & joint pain)


Crohn's Disease Forum » Your Story » Going on 12th yr with Crohn's
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