Is it Crohn's or not

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psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 7/29/2010 5:25 PM (GMT -7)   
Hi,
I have been having stomach and diarrhea, severe, for over a year now. my history is that I had a total colectomy back in Aug. 2008 for slow transit constipation. I have no bag, just my small intestine attached to my rectum. Then, my diarrhea actually got worse, even after the recovery period, so I was tested for food intolerance. I found that I have gluten, wheat, fructose, lactose, and MSG Intolerance. Well, I did okay for a year and then all of the sudden the diarrhea returned. Even worse, I have been gradually getting worse, with tons of muscle aches, stomach cramps(same pains as my muscle aches), severe fatigue, appetite changes,just recently fevers of 99.5-102.2 degrees, and tons of weight loss. On top of that, I can not digest any oral medications (even powders to help with diarrhea go right through me), my food comes right out of me, and I just can't stop losing weight. Even when I am hungry, I pay for it because the diarrhea and stomach cramps are horrible. My doctors and I are thinking an I.V. nutrition, but do not really want to go that route. I was never really tested because my old G.I.(who can not do anything for me) did not think I had it because of my history with slow transit constipation, which we found from my colorectal surgeon(who did my colectomy) that it was my numerous food intolerance that caused it. I am actually now going to another G.I. specialist in Boston who has more experience. For nutrition, since my food does not stay, I have been doing mostly soy milk to get my nutrients. I was recently thinking Crohn's because it matches my symptoms and also I have a friend whose son has it. I am unsure if it is or not, but I just wish the doctors would just test for something and help me. I really appreciate any opinion or help.

Maya
Asperger's Syndrome
Rectal prolapse surgery Dec. 2006
total colectomy with ileo-rectal anamastosis: Aug 7, 2008
Numerous food intolerance:gluten,lactose,msg,wheat,and fructose intolerance
Persistent/chronic Lyme Disease: March 2010(org dx in Sept 2009, but meds unsuccessful)


MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 7/29/2010 5:48 PM (GMT -7)   
Wow Maya, I do not know and I do not know if any of us could tell you. IV nutrition might be something to think about. But I was wondering if you have had a pill camera done? Or any other actually laying eyes on your intestine since your surgery? There are different things it can be.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

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RedSoxGirl85
Regular Member


Date Joined Jun 2010
Total Posts : 265
   Posted 7/29/2010 8:52 PM (GMT -7)   
Who are you seeing in Boston? Dr. Joel Mason won the gastroenterologist of the year award in 2008 & 2009 and his main focus is in malabsorption. nutrition type stuff. Not sure who you are seeing but this doctor is great!
RedSoxGirl85
50mg 6MP
10mg Prednisone
1000mg Sulfasalazine 3x Daily
50000IU Vitamin D Once a Week
Zofran ODT As Needed
100MCG/ML INJ, 1ML Cyanocobalamin B12 Every 3 Weeks
 


Cyborg Ninja
Veteran Member


Date Joined Jan 2006
Total Posts : 660
   Posted 7/29/2010 8:59 PM (GMT -7)   
What did they diagnosis you with before your colectomy?
Current DX: Graves' disease, Crohn's disease, gallstones, scoliosis, syringomyelia


psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 7/31/2010 6:19 AM (GMT -7)   
1.Red Sox Girl: I am seeing Dr. Fred Makraurer at Brigham and Women's.

2.Cyborg Ninja: I had slow transit constipation all my life before surgery, but it was due to lifelong food intolerances, which they did not know about back when I was younger.

3. MMMMNavy: they have, but they ruled out my surgery as a cause, since I was did great for a whole year after I had avoided foods that I could not tolerate. I was tested for Celiac, every single bacteria, and everything, but Crohn's. They did not put a pill camera for me. All they did was an ileoscopy, but that was back several months ago, when things were not as bad. The doctor did not have any tests done for Crohn's, which is a big mistake.
I am suffering everyday and I do not know how much longer I can go. The bad part is that I have way too much going on in my life, especially now that I have gone back to school. I also am supposed to be starting internships this year, as well, but without any diagnosis, I am unable to have any treatments. I have tried every medicine known to man, but was unable to digest anything. I have been unable to digest anything in oral form, especially pills and powders, which come right out of me (and hurt and bleed when they do). Thank you all again for the advice. I really appreciate this, as this has been hard on me.
Asperger's Syndrome
Rectal prolapse surgery Dec. 2006
total colectomy with ileo-rectal anamastosis: Aug 7, 2008
Numerous food intolerance:gluten,lactose,msg,wheat,and fructose intolerance
Persistent/chronic Lyme Disease: March 2010(org dx in Sept 2009, but meds unsuccessful)

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 7/31/2010 7:38 AM (GMT -7)   
Wow I am so sorry you are suffering so. I have no advice, but just wanted to send you some gentle hugs, and pray they can find out whats going on with you. Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease 
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

psygirl6
Regular Member


Date Joined Aug 2008
Total Posts : 268
   Posted 7/31/2010 6:45 PM (GMT -7)   
Thanks Nanners. I am hoping to get get some answers. I keep being tested for bacteria and things that do not make sense and they all come out negative. I am just so afraid to do anything that I sometimes just want to drop everything and just give up and suffer. This whole process is very frustrating. The sad thing is that I make suggestions, but no one listens to me. I am however going to ask if they can test me. My mom even told me that she feel that I may have it, as well.
Thanks you all for the great advice and support. I hope and wish you all the best, as well.

Maya
Asperger's Syndrome
Rectal prolapse surgery Dec. 2006
total colectomy with ileo-rectal anamastosis for slow transit constipation: Aug 7, 2008
Numerous food intolerance:gluten,lactose,msg,wheat,and fructose intolerance
Now struggling with worse stomach, diarrhea issues, which are now uncontrollable.
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