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Crohn's Disease Forum » Your Story » Help! Crohnís Questions!


01-03-2018, 02:23 AM   #1
carlysigne
 
Join Date: Dec 2017
Help! Crohnís Questions!

Hello! I was diagnosed a little over a year and a half ago, but I have been symptomatic for 9 years. I am currently a freshman in college. So Iíve been on azathioprine for over a year. Over time my nutrients and all that have improved (Iím no longer anemic after 8 years). Also according to my blood and stool tests the inflammation of my crohns is gone. However I was convinced that I was still sick despite what my doctors thought ó they assumed I just had IBS and that is why I still had pain every day, diarrhea many times throughout the day, etc. I convinced them to do a pill cam and the ulcerations, bleeding, and mucus, etc was all the exact same as it was over a year and a half ago. Why is it that my inflammation markers are saying that Iím fine, when everything inside is still a mess? My doctor said she didnít know why this was happening and Iím trying to get in with a doctor at University of Chicago. Anyone else have a similar experience and that they can explain because none of my doctors have a clue or want to tell me whatís going on? I just want relief! Iíve been sick for nine years. All of my childhood. Itís all I know. I really just need some guidance. I am the one who convinced my doctors to check for crohns in the first place because they just told me it was growing pains, menstration cramps, and anorexia / bulimia the whole time when it wasnít at all! Thanks! Sorry this post is sort of a mess haha
01-03-2018, 08:05 AM   #2
erk
 
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Hey, I'm new to this and in a different situation to you, but when I did blood and stool tests they both came back fine, yet colonoscopy and biopsy showed inflammation. I've no idea on this myself, but there's a lot of knowledge on this forum so I'm sure someone will have an understanding as to why this happens.
01-03-2018, 08:58 AM   #3
ronroush7
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I dont know what the answer is but there will be others who can possibly give an answer. Sending support.
01-03-2018, 08:16 PM   #4
Maya142
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There is actually no good answer for that - it just happens sometimes. ESR and CRP are not specific inflammation markers - they aren't gut specific. So sometimes they will be raised when there is no gut inflammation (for example if you have a virus, it could raise your inflammation markers) and other times they will be normal even when there is inflammation. For a certain percentage of people with IBD, they are always normal.

There is a specific gut inflammation marker - Fecal Calprotectin. That is much more accurate than ESR/CRP. It is elevated when there is inflammation in the gut. Of course, it isn't perfect, but for most people with IBD, it is a good marker and is pretty sensitive.

It sounds like you need a different medication, carlysigne. Hopefully, the new specialist will be able to get you on something that will work for you. There are several options, but probably a biologic like Remicade/Humira/Stelara is the next step.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
01-03-2018, 09:29 PM   #5
Lady Organic
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Have the dr increased Imuran to the maximal dose? You'd need a good 3 months of patience to see if this can help.
__________________
''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
01-04-2018, 07:51 AM   #6
my little penguin
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For some blood work just doesnít show the story
What has the GI suggested since you still have ulcers on the pillcam ?
Definitely get a second opinion
Hopefully they can get you on a new medsoon that helps
There is mtx and biologics as well
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01-04-2018, 06:32 PM   #7
JessT4
 
Join Date: Jan 2018
Location: New Jersey
My experience is that my inflammatory markers result as false negative when I am on medication. I donít know the science behind that....itís just my experience. My experience is also that as a female they always want to point towards the female organs and not address the colon. Not until I had a hysterectomy....which was the best decision ever, but not until after I had my two children...did that component stop being the doctors first excuse for the pain and symptoms. I wish you the best... Donít give up the fight and if it doesnít sound right...it probably isnít. Itís your bodyís nd you know you better than any doctor.
01-05-2018, 03:23 AM   #8
MizzSarah
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Colonoscopys are often the best source to find direct answers. Most all of my blood work has come back close to normal so doctors have never been able to rely on that to figure out what may be off. Also keep in mind that if doctors are saying your in remission that does not necessarily mean your symptom free. Some people have no symptoms for years whereas there are others who still experience these symptoms but not as heightened. For example, on Humira I notice a tremendous difference in how I feel. Less bathroom trips. Less everything. However if I miss one single dose I am back to square one. I still have abdominal cramping and bloating. I still have bathroom visits. I was even given the greenlit that I was in remission. Donít buy into that terminology because even my gastro doctor says he rarely sees people that are non symptomatic even when medically they are in remission.


Hello! I was diagnosed a little over a year and a half ago, but I have been symptomatic for 9 years. I am currently a freshman in college. So Iíve been on azathioprine for over a year. Over time my nutrients and all that have improved (Iím no longer anemic after 8 years). Also according to my blood and stool tests the inflammation of my crohns is gone. However I was convinced that I was still sick despite what my doctors thought ó they assumed I just had IBS and that is why I still had pain every day, diarrhea many times throughout the day, etc. I convinced them to do a pill cam and the ulcerations, bleeding, and mucus, etc was all the exact same as it was over a year and a half ago. Why is it that my inflammation markers are saying that Iím fine, when everything inside is still a mess? My doctor said she didnít know why this was happening and Iím trying to get in with a doctor at University of Chicago. Anyone else have a similar experience and that they can explain because none of my doctors have a clue or want to tell me whatís going on? I just want relief! Iíve been sick for nine years. All of my childhood. Itís all I know. I really just need some guidance. I am the one who convinced my doctors to check for crohns in the first place because they just told me it was growing pains, menstration cramps, and anorexia / bulimia the whole time when it wasnít at all! Thanks! Sorry this post is sort of a mess haha
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Crohns Disease
2014
Meds: Humira & Entocort
2nd Gen affected
01-12-2018, 03:10 PM   #9
pdx
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Sorry I'm late with this reply, but I just wanted to echo what people have said above. Blood inflammation markers like ESR and CRP can be low even when Crohn's is active. It definitely sounds to me like your Crohn's is not in remission and that you need a stronger medicine, such as Humira or Remicade. Please keep trying to get a second opinion!
__________________
Daughter E (15) dx with Crohn's 12/18/14 at age 12

Current treatment:

Remicade started 12/24/14 (currently on 9 mg/kg every 6 weeks)
Oral methotrexate restarted 12/2/16 (15 mg weekly)
vitamin D, folic acid, multivitamin, Prozac

Past Treatment
90% EN via NG tube 2/9/15 - 4/2/15
50% EN via NG tube 4/3/15 - 4/18/15
Supplemental EN via NG tube 5/7/15-6/19/15
Budesonide 3/3/15-6/30/15
Oral methotrexate 3/13/15 - 5/14/16 (15 mg weekly)
Topical clobetasol for Remicade-induced psoriasis
01-13-2018, 03:33 AM   #10
carlysigne
 
Join Date: Dec 2017
Thank you!
01-13-2018, 06:26 PM   #11
zzx2847
 
Join Date: Jan 2018
Location: Illinois
I had a similar issue where the doctors thought I had IBS only to find out after getting worse and worse that I am in a active flare. None of my ESR or CRP tests showed anything Calprotectin was also low. Yet the colonoscopy was moderate Crohns all throughout the colon and ileum. I am hoping Remicade will work now.
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