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Crohn's Disease Forum » Your Story » Something is wrong


06-11-2015, 09:14 AM   #1
Jdl6297
 
Join Date: Jun 2015
Location: Gloversville, New York
Something is wrong

I'm a 24yo female and I've been diagnosed with crohns for 5 years. It's been a long road of ups and downs with my disease so far, but within the last 4 months or so I've been feeling like something is different. I'm currently not on any prescription medications for my crohns but do take a few vitamins. Lately I've been feeling so tired all the time, I sleep any chance I can get. I have a hard time focusing and finding motivation. I'm constantly feeling like I'm on the verge of coming down with something, and wonder everyday if today's the day it hits me and I'll have to go to the hospital, but that has yet to happen. Any blood test have come back normal, and I have just mild recurrent crohns. After doing a little bit of research I think I may have add, but I'm not quite sure how to explain to my dr what's going on and how I just don't feel right. Any one else have similar problems or any advice?
06-11-2015, 10:57 AM   #2
seebee
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Join Date: Jun 2012
Location: New York

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First off, welcome to the forum though sorry to hear that you aren't doing too well now. Just wondering, are you not on medication for any specific reason? Maybe schedule an appointment with your doctor to discuss your symptoms and see what plan you can come up with.
06-11-2015, 02:08 PM   #3
Jdl6297
 
Join Date: Jun 2015
Location: Gloversville, New York
I haven't been on medication since I had an ileosectomy a few years ago, my symptoms have been very manageable for my crohns
06-11-2015, 02:27 PM   #4
Clash
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The problem is, even if symptoms are manageable or sometimes nonexistent there can still be simmering inflammation causing irreparable damage. That's why it is always good to have regular scopes, imaging, fecal calprotectin stool tests and blood work for inflammatory markers if that's a good indicator for you.

My son started with symptomatic flares but for 9 months before surgery he was asymptomatic and his blood work was normal even though there was simmering inflammation going on inside. After his ileocecectomy he was again asymptomatic but recent scopes showed inflammation at the cellular level. That inflammation if not taken care of with meds can irreparably damage his intestines leading to further surgeries. We are still trying to find the right med for him and it has been a lot of trial and error.

Even if you decide that you aren't going to take meds regular checkups and tests are always needed to make sure the Crohns isn't silently, insidiously active.
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Clash
Mom to
C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
06-12-2015, 10:49 AM   #5
24601
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Location: London, UK
Fatigue can be a symptom of Crohn's and can indicate active disease - even with normal bloods. And the difficulty you have focussing and finding motivation could well be caused by this fatigue.

I would tell your doctor just how tired you've been feeling and ask for imaging to determine if you have active disease - for example there may be inflammation seen with a colonoscopy or MRI.

Have they done any imaging since your surgery or just relied on bloods?

Has your doctor suggested any maintenance meds?

__________________
Stricturing jejunoileitis dx 1996 aged 17
Current treatment: stem cell transplant
Previous treatment: Humira + methotrexate
Past treatments: prednisolone, azathioprine, budesonide, pentasa, EEN (oral and NG), elimination diet, SCD, whipworms, 6mp, Remicade, anti-MAP antibiotic therapy
Surgeries: small bowel resection and strictureplasties in 2001, 2005, 2009, 2014
06-12-2015, 03:13 PM   #6
Jdl6297
 
Join Date: Jun 2015
Location: Gloversville, New York
I have had 3 colonoscopies since my initial surgery, and also an adhesion removal surgery in 2012. My last colo was about a year and a half ago, at which point my GI specialist had retired shortly after. I have gone to a couple different GI since but was pretty unhappy with how the appointments went, so currently I have an appointment with a new specialist coming up in two weeks. Which I'm certain an endo/colo will be ordered, and possibly more.

I guess something that worries me is that even when I had severe crohns and a stricture, with some low levels in blood tests- I had never felt this fatigue before.

I did realize that I meant to say I'm not on any prescription meds, along with a couple vitamins I have started Prilosec about a month ago directed by my primary, for bloating and pressure in my upper abdomen after eating, which he believes to be from gastritis. That has helped wonders for the upper issues.
06-13-2015, 07:08 PM   #7
scot865
 
Join Date: Jun 2015
Location: knoxville, Tennessee
Generally speaking not sure what amount of bowel you have remaining. See if he will do a CT on you, to check for any thickening of the small intestine. More often then not this will attribute to fatigue, even with normals on your levels. Alot of times doc's kinda skip the whole small bowel and just order generic barium/xrays. And if the thickening is in the mid small it usually will only show on a ct, and or mri. Barium follow throughs while sometimes effective, have never showed anything wrong with my intestines, even the ones i had to have removed. The simplest way to get a ct is walk into an er tell them you think you may have a deep abscess thats pushing on your bladder, and your afraid of going septic. Youll have a ct done with short order.

And to be clear, when i say barium follow through/xray didnt show anything wrong with my large intestine and a month later it fell out. heh. literally. As for the gastritis, did he just say hey i think its gastritis or did he actually do imaging?

In my current flare my gi endoscoped me took 5 biopsies, ordered a barium follow through, and the nice lil dna tests they do now a days. I explicity told him he would find nothing and he found nothing. So i went to the er told them about my fatigue weight loss that previously i had 2 abscesses on my bladder that only had air come out when they needled them(truth) so my doctors back home and i am concerned that they are still there. WE need to make sure because i cant risk going septic again. Poof ct/mri done. Beautiful images of the flares. Gi thanked me.

Sometimes cd/uc is like a ninja, hiding out. You gotta just keep pushing.
06-16-2015, 10:38 PM   #8
Jdl6297
 
Join Date: Jun 2015
Location: Gloversville, New York
Thanks for the advice! I will know more about what tests my new GI will order when I see him for the initial visit in two weeks.

As for the gastritis, I was set up to see a new GI at the time I brought up the symptoms to my primary, so he said it sounded like gastritis and to try to Prilosec until i found out more from GI. But the specialist I was set up to see kept rescheduling, so I recently called another office to get in asap.
06-17-2015, 03:20 AM   #9
liscol
 
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Location: Hamilton, New Zealand

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Another thing to cheek if you haven't already is iron and b12 levels. I have been low in these at different times and the main thing I felt was fatigue.

Just a thought.

good luck with your new GI.
07-07-2015, 07:58 PM   #10
Jdl6297
 
Join Date: Jun 2015
Location: Gloversville, New York
A little update for anyone still following.. and a thank you to the input given so far!

I had my initial visit with my new gastro last week. The day of my appointment was a not so good day, which was sadly beneficial so I could be make sure I covered all the symptoms I have been experiencing lately.
I went over all of my history, although my records were still pending being sent from my previous gastro's office. I also told him about my symptoms: fatigue, occasional nausea, daily diarrhea, vomiting a couple times throughout the week on average, increasing sharp pains in lower abdomen on a day to day basis- usually 2-3 days a week, and an increase feeling of bloating under my ribcage and acid reflux.

He gave me a quick physical exam, and sent me on my way with a script of prednisone 30mg for 10 days then I will go back to see him again. He also scheduled me for an upper GI endo in a couple weeks- his soonest opening.

After leaving the appointment I was somewhat concerned that he hadn't ordered more screenings/tests since I told him I havent really had any in at least two years and in the last 3 months my symptoms have returned and have been difficult to deal with at times.

The past couple days I have had severe pain in my lower abdomen and called his office this morning, in which they instructed me to go to the ER as my Dr. was scheduled for procedures all day today. At the ER I began vomiting pretty much nonstop until I received Zofran and morphine for pain. I had bloodwork drawn- which showed almost perfect levels of everything they checked, which i am unsure of what was checked except my bloodcounts. They also did an x-ray of my abdomen which I was told showed nothing. I was sent home with a script of the zofran and percocets for pain.

When I return next week to my gastro for a follow-up I definitely plan on requesting additional blood tests, a colo, ct, and barium/xray.

I have been feeling extremely down during this whole process this last week. I know my body and the pain Ive been feeling and I know theres something definitely going on...

Once again thanks everyone for the advice and support. I've never really been on one of these forums and its comforting hearing from everyone.
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