Posted 10/20/2016 7:32 PM (GMT 0)
Hi,
I want to thank everyone in advance that sticks through reading this – it’s going to be a long post.
about a year ago I posted something very similar to this in the UC forum, but I don't really think that was the appropriate place for it as they’ve ruled out UC. I don’t even know that this fits in here but here goes.
It’s been a really rough year for me, I’m so frustrated and don’t know what to do.
I’m a 27-year-old male, 5’7”, current weight is 117lbs
Around 2010 is when I first started noticing symptoms. At the time I was pretty healthy overall but did suffer from migraines. My symptoms started off with diarrhea and abdominal cramping. At the beginning it wasn’t all the time, but it did become more and more frequent. I dealt with this for a couple years until it eventually got to the point where I was taking handfuls of Imodium daily and had more D than normal bowel movements.
Jump to 2012 – To go along with the D and cramping I started having bloody stools which prompted me to see my primary, who then referred me to a gastroenterologist. At this point it didn’t really seem to matter what I was eating, I was constantly stuck in the bathroom. The gastro put me on a couple different elimination diets to see if this was food related (each diet was only attempted for 2-3 weeks; no long term diet modifications were made, and no improvements were seen on these diets). They also ordered stool studies and blood panels, along with a colonoscopy. Everything here came back unremarkable. The GI determined I had IBS and nothing else was really done. I just lived with it.
Jump to September 2015 – Take my original symptoms and triple them. Along with the typical symptoms (which were now worse), I also had new symptoms.
Diarrhea: I began having D all the time, several times per day, with increasing urgency (at times I would have to rush to the bathroom to go, Id stand up when I was finished, and have to immediately sit back down and go again before I could even pull up my pants). I would wake up in the middle of the night with an extreme urgency to go and I would be drenched in sweat. I could eat a meal and then minutes later need to rush to the bathroom for relief. I even had several instances where I thought I couldn’t hold it any longer and would have resulted in crapping myself or pulling my pants down on the spot. I also noticed that foods I had eaten became identifiable in the bowl after going (not something that I had previously). The bloody stools returned with more frequency. The D was very runny, mostly liquid and never formed. Sometimes there was what looked like foam mixed in, and when it was bloody it was bright red streaks. The smell also became very foul.
Cramping: The cramping was pretty consistent but was definitely worse after eating. At times it would become so bad that I’d be doubled over on the floor drenched in sweat. The only time I would get relief was after a bowel movement and even then it wasn’t fully gone.
Appetite and Weight Loss: To go along with the D and cramping, I completely lost my appetite. Food no longer sounded good and my mind would tell me not to eat due to the aftermath (this was a gut feeling, hard to explain). I was skipping meals and when I did eat I had to force myself to do it. Between September and November, I had a steady decrease from 140-145lbs down to 117lbs which is where it’s leveled off. My lowest weight was 115lbs.
Fatigue: Overall I just feel awful. Tired all the time, lack of energy, etc.
When I called to schedule an appointment with the GI they weren’t able to get me in for a month, even with the wait I took the appointment. In the time between now and the appointment I bumped up the Imodium hoping it would provide some relief. Unfortunately, it didn’t.
A week later I couldn’t take it anymore and went to the ER. At this point I was extremely dehydrated and was put on fluids for several hours. They gave me new medications to replace the Imodium (Lomotil and Dicyclomine). These medications helped to slow everything down but didn’t fully put a stop to everything. They ran some general bloodwork which came back normal and I was discharged with instructions to follow-up with the GI.
Once I got in with the GI they ran more comprehensive blood work, along with another round of stool studies. The focus now was the possibility of Crohns disease. I was again put onto an elimination diet to rule out food causes (which again, didn’t make any difference in the symptoms, and again was only trialed for 2-3 weeks). After these tests came back normal, they ordered a CT Enterography (normal), then an EGD with biopsy (normal), and then a Sigmoidoscopy with biopsy (again normal). My GI really didn’t have any more ideas here, so in a last ditch effort my I was started on a Prednisone taper (started at 40mg and tapered from there).
Results of steroids: Prednisone is a double edged sword and a deal with the devil. Once I started the 40mg dose, my symptoms almost completely went away. I was back to having normal bowel movements, the cramping was gone, and I was getting my appetite back. However, I became extremely agitated and had crazy mood swings, and it was making me sweat a ton. Each day these side effects got worse but I discussed them with my family and doctors and decided to ride them out and complete the full course of steroids. Unfortunately, once I came off the steroid taper the symptoms all came back.
The GI now ordered a capsule study (which came back normal). After this the GI recommended trying a low dose of Imipramine to see if it helped slow down the diarrhea (constipation is a side effect). I took this for several months with no real noticeable difference.
With no new ideas on what to do next I scheduled an apt at UW medical center in Seattle. My doctor there was able to go over the vast amounts of records from all of my previous tests, which was helpful. He noticed some things during my exam (I tend to flush a lot, which is very noticeable on my face and neck), along with dermatographia on my back. This made him think a possibility could be MCAS (Mast Cell Activation Syndrome) or something similar. We scheduled a second colonoscopy to again check for possible Crohns disease, along with the MCAS testing.
During the time between this appointment and my scope, he suggested that I try taking Colestipol incase this was bile acid related. I took this but it almost immediately made me incredibly constipated, to the point where I couldn't go anymore (I also got really bloated). I stopped this medication and he gave me cholestyramine to try instead (starting at 1/4tsp and working up as tolerated). I really didn’t notice much improvement.
Next was colonoscopy round two, along with other tests specific to MCAS. All of this came back unremarkable.
Here is where I hit my lowest weight of 115lbs and I again asked the GI to put me back on steroids. Instead of Prednisone, we tried going with Entocort this time (which I’m still on, for the past 5 months).
After this, the GI at UW performed more comprehensive blood panels and decided they wanted to schedule a second capsule study (again came back unremarkable). After this, a small bowel x-ray with barium follow through (unremarkable).
We’re now at today.
Since starting on Entocort 5 months ago at 9MG, the symptoms have lessened overall, but I do still have diarrhea and cramping. I’m still at 117lbs despite working with my doctors and a dietitian. It seems impossible for me to gain any weight back. I tracked my intake for several weeks using MyFitnessPal for the dietitian, with the goal of hitting 2500 calories per day. With the lack of appetite this was extremely difficult at first, but over the course of a few weeks I was able to get back up to a “normal” adult diet, and then build up additional food from there. There’s been no change in my weight. I’m stuck where I’m at.
My GI at UW thinks continuing to take the Entocort is OK for now since it seems to help. He’s not ruling out Crohns, even though every single test makes it seem unlikely. I recently had the dose lowered to 6MG to see what happens.
We’re now waiting for lab work which was sent to Mayo Clinic for the possibility of Autoimmune enteropathy. We’ve also sent out an adult blood allergy panel, and we’ll be scheduling an appointment with an allergist to explore those options.
It’s interesting that it says Autoimmune enteropathy may be linked with a predisposition to autoimmune conditions. When I was very young (3rd grade maybe), I was diagnosed with acute bilateral optic neuritis (not autoimmune, but inflammation issue yes). Two years (ish) later, I was diagnosed with Henoch-Schonlein purpura. My dad was diagnosed with type 2 diabetes within the past few years. My oldest brother has similar GI problems to my own (though his workups 15+ years ago indicated crohns was likely – he remains untreated as he does not want medications, he self manages). I have another brother with GERD, and his 12-year-old daughter (my niece) was just diagnosed with Lupus. Out of curiosity, I had an ANA screen done on me a couple weeks ago – which came back negative.
According to Mayo Clinic, the first line of treatment for AIE is steroids. It’s already shown that Prednisone made a night and day difference for me (though the doctors couldn’t explain why). And I believe Entocort has helped lessen the symptoms overall. It also mentions TPN in the treatment along with the steroids, which I have asked my doctors about already and they were opposed to it. I’ve also asked about a feeding tube, which they were also opposed to (even with the recommendation from my dietitian). I know this is extreme, but I would take it if the option was given. I feel like I’m wasting away and I’m willing to accept the downsides to this if it meant the possibility of regaining my weight and life. I’m disgusted with looking anorexic.
Here’s a detailed list of my procedures/labs:
History:
Age 5 - Bilateral Optic Neuritis
Age 7-8(ish) - Henoch-Schonlein Purpura
Age 17 – Began having migraines, still do today but managed with prescriptions
Age 19 – Began having diarrhea and cramping
11/2011 - Blocking Kidney Stone (surgically removed)
11/2013 - Blocking Kidney Stone (surgically removed)
Sudden onset of hearing loss (constant tinnitus in right ear)
Hair loss (started after high school)
Diagnostics:
05/2013 - Colonoscopy with biopsy
10/2015 - CT Enterography
12/2015 - EGD with biopsy
12/2015 - Sigmoidoscopy with biopsy
01/2016 – Capsule Endoscopy
04/2016 – Colonoscopy with biopsy
08/2016 – Capsule Endoscopy
09/2016 – Small Bowel xray with barium follow-through
Lab work:
11/2012 - CBC No Differential , Thyroid Stimulating Hormone
02/2013 - Thyroid Stimulating Hormone, Comprehensive Metabolic Panel, CBC with Differential, Celiac Panel Extended, Sedimentation Rate
04/2013 - UA W/Microscopic, W/Culture, Stool Cultures
10/2015 - Giardia Antigen, Stool Cultures, OVA and Parasite, UA W/Microscopic, W/Culture
12/2015 - Basic Metabolic Panel, C-Reactive Protein, Sedimentation Rate, Fasting Glucose
03/2016 – Tryptase, Carotene, Immunoglobulin A G, Chromogranin A
07/2016 – Calcitonin, Sedimentation Rate, CRP High Sensitivity
07/2016 – Comprehensive Metabolic Panel, TSH, CBC with Differentiaol, Ferritin, Amylase, Lipase, Sedimentation Rate
08/2016 – Vitamin D (25 Hydroxy), Magnesium
09/2016 – ANA Qualitative Screen (Reflexive)
10/2016 – Heavy metals screen, Adult comprehensive food profile, anti-enterocyte antibody
Current daily medications:
Budesonide (Entocort) – 2cap per day
Duloxetine - 1cap per day
NOW Super Enzymes – 1cap per day
NOW Saccharomyces Boulardii – 1cap per day
NOW Probiotic 10 – 1cap per day
Current as needed medications:
Diarrhea: Lomotil, Dicyclomine
Migraine: Zolmitriptan, Toradol, Fioricet
Sleep: Prosom or Ambien
I’m sure there’s something I’ve missed, but if you’ve hung on reading until now thanks for taking the time to do so. Any thoughts or suggestions would be appreciated. I’m at a complete loss.
Thanks
Dennis