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I have been having a flair up. It started in June 2008 with some fevers of 104, bloating, diarrhea, cramping and pain in my lower left abdominal region. I thought it was a bout of diverticulitis so I changed my diet to clear chicken broth and baby food.  It continued to get worse. Just prior to being hospitalized, I couldnt even drink water without pain.

The Dr.s have done all the tests, blood work, stool samples, CT scans, upper GI etc,etc, but they still do not have a clear diagnosis.  I was hospitalized for 9 days over the holidays 2008. During that time they fed me intravenously (I had lost 20 lbs.) and had me on antibiotics.  When I got out of the hospital I was put on another round of antibiotics, steriods and Ascol.  The inflamation and cramping got worse and I lost another 5 pounds because I was afraid to eat.  I met with a surgeon today. He said since they do not have a clear diagnosis he can not recommend one way or the other as to whether I should have surgery. Its all up to me. If I do opt to have surgery they will remove my sigmoid colon. Frightening stuff not to mention I could very well loose my job because Ive been off for so long.

By Dr.'s orders I am backing off the steriods (only 4 days left).  I am also considering stopping the Ascol to try a different approach. Maybe a different diet instead of the low fiber diet, drinking a lot more water. . . I dont know I am at the end of my rope here! urgh!!

Anyone else have a similar experience or any suggestions??

Thank you! :)

 Reply posted for Sunshine.

Sunshine,

I have to say your symptoms do sound a lot like Crohns disease but I am not a doctor.  It sounds like the diet changes are helping.

As for surgery, I will be honest with you.  It's a tough recovery.  You will never want jello again.  And chicken broth is just evil. (just kidding)  They will probably start you out on no food, then clear liquids, and slowly move you up to solids.

Afterwards, you will be weak for a while.  But it will be worth it in the end.

I have had the surgery twice so I do have some pointers.

1.  Ask them for a central IV line.  I was in the hospital for 10 days and the central line is put in while you are asleep.  It is put in your neck but it leaves your arms free while you recover.  You can actually put on a shirt this way.

2.  Ask for a PCA - Patient controlled anagesic - instead of pain pills they give you a pain pump.  Totally worth it.

3.  Get a private room.  One of my surgeries was emergency and I got put in a room with some crazy girl that just kept complaining that her throat hurt.  If it hurts to talk then shut up.

4.  Put on paper any and all requests that you may have prior to checking in and give copies to everyone you see.  It sounds a bit juvenile but you have to look out for yourself and once those drugs are in you, you will be in no shape to demand things.

5.  Stay positive and make friends with the nurses.  They will seriously be your lifeline.  If you get along with them, they do stuff like wash your hair and bring you magazines.

6.  When you get home, have some desitin, extra TP, and flushable baby wipes.  Once your guts get upset you have a tendency to get "D" afterwards.  These things will only make you more comfortable during recovery.

Good Luck with everything.  I hope things go well for you.

 Reply posted for Sapphire.

Sapphire, Thank you so much for your reply. :)

Since I posted, I tried something radically different from what my Dr. was telling me to do.  I thought 'what the heck, I'm headed for surgery anyway what do I have to loose?'.  So I stopped taking all the meds, the Asacol and the antibiotics (This will be my 5th round), and I have nearly tappered off the Steriods ) only two days left. Then I started completely flushing my body with a 1/2 and 1/2 mix of Aloe Vera juice and water and drinking smoothies made with a mixture of Almond milk (soy milk causes gas), Flax oil, All Day Nutrituon powder and banana.  I started doing this on Friday evening and this morning (Monday) the symptoms are nearly gone.  I don't have the burning and cramping anymore and the pain in my lower left ab area is all but gone. Yesterday is the first day in months I have not had to take anything for pain!

I will update this posting as changes occur in hopes that sharing my experience will be of benefit to someone else.  As of today, I feel well enough to start back to work next Monday with no reservations (I have been off work since the middle of December). 

 Reply posted for Sunshine.

It sounds like you might have Crohn's or colitis, but it could possibly be that disease that your allergic to glucose, which is in practically everything, I think its called ciliac or something like that. I would definitely recommend getting a second opinion.