Crohn's Disease Forum » Your Story » 15+ years to get a diagnosis and frustrated!


10-10-2018, 03:30 PM   #1
Mountaineer01
 
Join Date: Oct 2018
Location: Baltimore, Maryland
15+ years to get a diagnosis and frustrated!

Hello all,


I've been experiencing all the symptoms of Crohn's for over 15 years, only to finally get the diagnosis this Spring at age 37. My symptoms in this time have included:

- uncontrollable diarrhea and bloating
- sharp pain in the lower right quadrant and above the navel
- extreme fatigue
- night sweats
- difficulty sleeping
- sores in the mouth
- red flaky psoriasis on the scalp, face, neck, chest, and arms (very unsightly, especially in a professional workplace)
- inflammation of the hip and knee joints
- frequent kidney stones


I had my first colonoscopy at age 25. There was some inflammation and proctitis found, but the major thing the gastroenterologist focused on at the time was a small pre-cancerous polyp that was removed. He kept saying how unusual it was for a 25 year old male to have a pre-cancerous polyp and seemed to lose sight of everything else I had been experiencing. I was told that what I was experiencing was "IBS" of unknown origin and I was put on dicyclomine and Lomotil to control the cramping and diarrhea and told to follow up every six months and to have a colonoscopy every three years since I was deemed "high risk" for colon cancer.


I went to a different gastroenterologist a couple of years later. He basically focused in on the same thing - the history of pre-cancerous polyps and the fact that he was used to seeing them in people over 60 vice someone in their late 20s. I stayed with this doctor for a few years, but he didn't really do anything different than the previous doctor. In the time I was with him, I had three more pre-cancerous polyps removed. With each colonoscopy, I was told that the biopsies revealed inflammation, but was reassured that it was nothing to worry about. My lab work in the meantime kept showing one marker for Crohn's, but I was told that it was ok as long as I didn't have both markers, whatever this meant. I was also told each time that I had a serious deficiency of Vitamins B and D, but to keep taking more supplements to try to compensate.


Fast forward to 2011. I'm still having symptoms, but the diarrhea is somewhat subdued due to taking about 3 Lomotils a day. By this time, I've become accustomed to making 4-6 trips to the bathroom every day. I started having sharp pain in my lower left quadrant at work one day. I went home and had to pull off on the shoulder of I-95 twice I was in so much pain. A county deputy came up to me and asked if I needed him to call an ambulance. I make it to the emergency room on my own, at which point I'm about to pass out from the pain. They determined I had a 6.5mm kidney stone stuck in my left ureter. By some miracle, I was able to pass it naturally, then I passed a smaller one right on its heels. Since this incident, kidney stones have been an almost yearly occurrence, though only one has been as bad as that first one.


This spring I went to see a different doctor. The doctor's analysis was pretty much the same, but his nurse practitioner told me that she would write an order for an MR Enterography. I had this done, and was amazed at the results I got back. The findings included:


- moderate to marked thickening of the ileum and cecum with two moderate strictures

- marked thickening of two sections of the transverse colon with a stricture in each location

- probable tethering of several loops of the small bowel


- scar tissue present on the exterior of much of the small and large intestine


This didn't happen overnight and I hate to think of where I would be if this test wasn't ordered. On my follow-up appointment, I was told I had "classic ileocolic Crohn's" and was put on 9 mg of Entocort a day and 500 mg of Pentasa four times a day. I was also told to take a hydrocortisone enema daily for 21 days, which I did although I didn't enjoy to say the least. I've been taking the pill regimen for a little over four months now.


The new medication regimen helped for a while and I finally started to feel better and have more energy than I had had in years. I had about two good months, then the diarrhea and bloating started to come back. I mentioned this to the doctor and was told to keep taking what I was taking.


About three weeks ago, I started having a reaction to the Entocort. I was feeling like I was burning up from the inside, sweating profusely, short tempered, and very restless even though my energy level was hitting the same bottom it was at before I started the medication. The gastroenterologist still wanted me to continue the Entocort, which I did until the effects got so miserable I couldn't stand them anymore.


I ended up going to see my family doctor, who told me that what I was experiencing was almost certainly the effects of being on a corticosteroid for too long. She put me on a regimen to wean me off of the Entocort over the next three weeks.


Needless to say, I'm getting a little fed up with what's been happening. It's really affecting my work, my home life, my morale, and everything in between. I'm going to see a new gastroenterologist in a couple of weeks who supposedly specializes in Crohn's disease, so I'm cautiously optimistic. I'm interested to hear what the new doctor recommends, but at the same time, I'm a little nervous about the more aggressive treatments out there.


My goal is to alleviate the symptoms as much as possible and try to live a normal life again. I'm sure I'll require surgery one of these days, but I'd like to try to put it off as long as possible. It's to the point that my wife and I are no longer invited to social functions because I've always had to decline. We also can't go anywhere that involves a lot of walking or physical activity because I get tired so easily anymore. I can't do any of my hobbies because I just don't have the energy anymore. I'd hate to see how it would be if I didn't take a fist full of vitamins every day.


Hope someone can relate to an experience like mine, or I hope that someone else in a similar situation reads this and realizes they aren't alone. Any and all suggestions of what I should discuss with the new gastroenterologist are welcome as well.


If you read this far, thanks for letting me vent!
10-10-2018, 05:20 PM   #2
Lady Organic
Forum Monitor
 
Lady Organic's Avatar
Hello and welcome!
You have sure been unlucky with doctors. Im glad you found someone who specializes with IBD and who will definately propose better treatment. Thank you for sharing your story! Wishing you well!
__________________
''UC-like Crohn's'' (2001)
wrists + ankles arthropathies (2013)
on: 50mg 6-MP (Purinethol)+ B12 shots


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 (pill, rectal), cortifoam, Imuran, Purinethol, methotrexate.
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