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Crohn's Disease Forum » Support Forum » I'm not using Imuran for two years!


11-07-2017, 11:04 AM   #1
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I'm not using Imuran for two years!

I've had a surgery in October 2015. 85cm of small intestine is dissected.
I'm currently anemic. My doctor prescribed me imuran 2 pills a day. I've decided to not use it any more since surgery. I currently don't have any pain issues and I feel great. Could the pain symptoms come back? Shouldn't they be back after 2 years of not using imuran?


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(My native language is not English)
11-07-2017, 11:18 AM   #2
valleysangel92
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Is your doctor aware that you're not taking the medication? If not then you need to make them aware as soon as possible as it's really important they know what you are and aren't taking.

It's good you don't currently have symptoms, but please don't take this to mean that everything is ok. If you're anaemic that can be a sign that you're bleeding or it can be because you're not absorbing enough iron from your diet, either way this can be a sign that you have active inflammation in the digestive tract.

It's quite common for people to have little to no symptoms despite having active disease, especially if the inflammation is low level. This is why most doctors recommend remaining on a preventive or "maintenance" medication even after the damaged areas have been removed. If you don't want to be on medication, it's really important to have regular checks and screening to make sure that any active disease is picked up really quickly.

I would suggest seeking advice from your doctor and requesting some blood tests and maybe some imaging or a scope to see what's going on inside. I don't want to alarm you but this disease can change very rapidly and I have seen people go from having no symptoms to needing emergency treatment within a few weeks.

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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/

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11-07-2017, 11:26 AM   #3
valleysangel92
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Just to add.. the fact you've managed to stay symptom free for 2 years doesn't mean it's less likely to come back at some point, it could be that it's been active for months already without you knowing and it's not unheard of for people to go 5 + years between flare ups.

11-07-2017, 11:29 AM   #4
ronroush7
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I agree .
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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
11-07-2017, 12:23 PM   #5
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I'm anemic because I'm not absorbing enough iron from my diet. I take iron supplements.
I'm taking all pills that my doc prescribed except imuran. I currently don't have inflammation, that's what my blood tests say. Three weeks ago my doc said i should stay in a hospital for a while to fix my too low hemoglobin, iron. Doc gave me 3x410ml ~1.2 liters ~0.32 gallons of blood and 5 infusions of venofer (iron sucrose injection).
I was in the hospital for 7 days. My doc discovered something new. I was positive on celiac disease. Since I'm far from my hospital i forgot to ask : Do I have crohn's and celiac at the same time?I'm eating gluten free now & feeling great except low concentration. I've ran blood tests a few days ago and my hemoglobin was even better then previous blood test but still low.
11-07-2017, 12:48 PM   #6
valleysangel92
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I'm anemic because I'm not absorbing enough iron from my diet. I take iron supplements.
I'm taking all pills that my doc prescribed except imuran. I currently don't have inflammation, that's what my blood tests say. Three weeks ago my doc said i should stay in a hospital for a while to fix my too low hemoglobin, iron. Doc gave me 3x410ml ~1.2 liters ~0.32 gallons of blood and 5 infusions of venofer (iron sucrose injection).
I was in the hospital for 7 days. My doc discovered something new. I was positive on celiac disease. Since I'm far from my hospital i forgot to ask : Do I have crohn's and celiac at the same time?I'm eating gluten free now & feeling great except low concentration. I've ran blood tests a few days ago and my hemoglobin was even better then previous blood test but still low.
If you're not absorbing enough iron, this can be because of inflammation, if the intestine is damaged by Crohn's then you loose ability to absorb nutrients from that area.

I have coeliac as well as Crohn's so yes it's entirely possible to have both active at the same time.

It's good that you aren't showing inflammation in your blood , but unfortunately this is not 100% accurate at finding active Crohn's. Many people do not have high inflammation levels in blood tests but still have active inflammation , so blood tests alone are not a good enough indicator to be certain theres no inflammation. At the very least I would recommend getting a fecal calprotectin (a stool sample ) to look for inflammation , this is much more accurate than blood tests and will allow your doctor's to figure out if you need any other tests.

If your iron is so low you need hospital treatment then that's a strong indicator that something more is happening. You can get low iron from coeliac disease , but it can also be a symptom of Crohn's. My iron has been low since my very early teens and has only been corrected by good management of my Crohn's , treating the coeliac made no difference. If you didn't have symptoms of coeliac then that shows that you could have active Crohn's and not know about it. I know you said your taking all other medications but if your doctor doesn't know that you're not taking the imuran then you really need to tell them.

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