So confused any advice welcome

[guest9933]

hey guys I'm feeling really crappy no D but thin ribbon like stools and heaps of gas cramps and pain and mucus and lumpy thick bits of mucus no bloods also have this cold sore like thingy in the corners of my mouth and peeling lips.
I'm on remicade only 2 doses and 4th week into second dose

I got told if I feel like this to come in to emergency and they'll admit me for surgery now I get a call saying that they are going to make an appointment for me to see my GI and the surgeon

Now what he is offering for me to do is take imuran and might want me to go on pred last time I saw him he reccomended I have my bowel taken out but now sounds like he is experimanting with me

Everytimee I eat I have gas cramping and mucus and generally very tired and not getting a good nights sleep

Whay would you do in my shoes get the surgery or take one more dose of remicade I feel so crap that I'm heavily leaning towards surgery

I feel like a science experiment and so confused

 

[rygon]

Its hard to tell without being in your shoes. At the worst I was bleeding enough to become anaemic, a lot of mucus, D all the time, virtually passing out going to the toilet (dizzy due to the pain). Finally got admitted to hospital for a week, and went on remicade. Didnt feel better until the 4th infusion but im glaad I chose that route rather than removing my large intestines. Mainly due to possible side effects of having them removed.

My stool are still pretty thin but I have no other problems. As ive said before, you may feel crappy now but its worth waiting a couple more months to see if the remicade works. I felt really bad for over a year (sleeping 12hrs+ a day, going to the toilet 20+ times a day) so a couple more months trying the drug didnt matter (about the same time as recovering from a major op i guess)

Wait until your 4th infusion then see how you feel. Have you looked at what you are eating btw and seeing if any of that is causing problems (it wont solve the issue but may help)

 

[guest9933]

anything I eat seems to mess me up

 

[rygon]

im guessing you havent noticed anything. If you look in the food section theres a list of things people find ok / not ok with their guts. Normally corn is a no no, salad and wholemeal is bad (get the jist..all the things that are supposed to be good aint for us)

Chicken soup is amazing (homemade even better) Processed stuff, things high in sugar (microwave meals etc) are bad. Its very hard to find a good diet which gives all the nutrients and keeps the bloating and pain away... but its worth it