You thought your IBD was hard to Dx

[Kev]

Hey all... Spent another productive day at the hospital (any1 give me a big Amen?)

BUT, I just heard the most alarming story... Thank God that hospital staff gossip as much as they do... (actually, I was told this by respected med. practioner who wanted me to know just how capable this person I was about to see REALLY is. Seems that this person is responsible literally for saving another IBD patients life)

However, since I haven't met the patient, and they don't seem to be a member of this site, I must caution you that this is annecdotal info at best, gossip at worst. I can't prove this actually happened, but under the circumstances I can neither stop from repeating this story (just in case) nor can I fathom a reason for my source to have made it up. Parts do tend to place the doctors involved in a kind of bad light.

Here goes... Person with some minor form of IBD had corrective surgery. All a-ok. A follow up showed no IBD inflamation of any kind remaining, and this was after a full spectrum of scope procedures. literally they checked this male patient out from one end to another. Case closed, right? Wrong.. Patient started complaining of getting sicker, losing weight, frequent diarhea, intense pains, etc.. So, just to be safe... they did all of the scopes again... from the bottom up & vice versa... Again, absolutely no sign of any inflamation, bleeding or other IBD signs.
Drs thought that the patient was faking, or it was psychosomatic (all in the head) or something, but they were extremely confident it wasn't any form of that ole IBD

So they literally ignored this patient... Sent him on his way. No one would listen..
Except the individual I went to see... Alarmed by the unsick patients continued loss of weight, (approx 90 lbs) and the fact that he claimed he was only able to get 1 can of ensure in himself a day w/o getting violently ill, this med. specialist FINALLY convinced a surgeon to do a little laproscopic exploratory, to see if there were some complications from the init. surgery causing these IBD like symptoms...

Guess what that exploratory SHOWED???? The patient was fully engulfed with IBD on the outside of the colon & illeum... Not on the inside where it would show in a scope... Now, I dunno IF this is true (but again, I've no reason to doubt it)... BUT IF IT IS... And someone else has heard or knows that this rare complication CAN/DOES OR DID HAPPEN, then I think the word needs to get out... EVEN if you have to do so under the stated proviso that this could be just an urban legend...

And if you're symptomatic but can't find a doctor who can make the right diagnosis
for god sake don't give up. Keep going until someone puts a name to your issues
and puts you on a treatment plan that works. You may not be as lucky as this 'unknown' IBD patient was.

 

[Jeff D.]

Wow thats crazy I new you can get it anywhere on the inside but never knew about the outside. Thanks for sharing the information.

 

[Tia]

Wow, am I ever glad I read your post! That story sounds like me! I had surgery in april and have been feeling really crappy for the last month or so and have lots 10 lbs (and I was thin from being sick before). I am going for ct scan so hopefully that will show whatever is going on. Thanks for sharing the story Kev!

Tia

 

[Cara Fusinato]

Mine was first seen from the outside when the surgeon went in to remove my appendix. He took lovely, lovely photos of the outside of about 18" of my intestine with all kinds of deposits, bubbles, and such. No one is sure, because they couldn't get the coloscopy scope through at the time due to severe inflammation, if the strictures I have are squeezing from the outside narrowing it down or building of scar tissue on the inside (or some of both). However, the "on the outside" thing is definitely a possibility as that's how mine was found.