Help!

[csolis]

I'm 21 years old and I have been on Remicade and 6MP since last September. Due to the risks for Lymphoma in young men on Remicade and 6MP they decided I shouldn't take the two for more than a year.

Upon beginning Remicade I felt great. My last episode came in April, my doctors office accidentally scheduled me later than I was supposed to have my infusion (13 weeks instead of 7). When they realized their mistake they decided to go ahead with my next infusion while also administering me a steroid. I was fine until the 7th day after my infusion when I found myself on the floor with excruciating pain in my upper right abdomen and lower right side of my back. It lasted for 20 mins then went away. This happened 3 times in one day. After which I was fine. My GI assumed I had a minor allergic reaction to having not had remicade for that long. They went ahead and continued my infusions at 7 week increments. I was doing ok until June I noticed that I was experiencing the horrifying Crohns symptoms again (urgency to go to the bathroom, painful loose mucoid stool, INTENSE nausea, abdominal pain, and what felt like a huge amount of extra acid in my esophagus). I had my next infusion and the symptoms went away.

Last weekend before I was due for my next infusion these symptoms all came back again by storm. It's like my worst nightmare, I have been locked inside for over a week with terrible nausea, loose stools, and vomitting. It feels almost as though my body is creating an extra amount of stomach acid and is burning my espohagus (causing nausea/vomiting) and (loose stools) could this be so? I'm afraid to go to sleep because I wake up feeling so miserable. I have to force myself to eat (I can tell I'm loosing weight like crazy). I cancelled my infusion appointment because I was too nauseous to leave the house.

My question is, does anybody else experience this? Does this mean Remicade isn't working or that I will need to be on it longer? If so, what does this mean for my Lymphoma risks?

On a final note. I honestly don't know if I would have been able to endure this much suffering without the relief of some cannabis (if only I lived in a state that made it more affordable/available for me).

 

[beth]

Gallbladder, get it ultrasound scanned. 20% of the population have stones without symptoms, but thickening of the wall means it's inflamed. Also make sure they scan the other organs to make sure they're okay too.

It could be a blockage, but pain in the back... Hmmm, unless it's a kidney stone, but that wouldn't fit with the other symptoms.

As ever, head for the ER when you are in pain, or your GP.

Oh and welcome to CF, do introduce yourself in the "Your Story" section.

 

[Regular Joe]

Hi csolis,

I might venture to suggest that the nausea/vomiting/acid phenomenon you're dealing with might be a separate animal than your Crohn's. Going into to knee surgery I did have a mild partial small bowel obstruction which was Crohn's. The GI said I'm either gonna deal with my gut or my knee, but not both. He suggested taking care of the knee because I already know what to expect with Crohn's.

But the bigger issue was another diagnosis that was heart of the acid/vomit symptoms. Turns out I have what's called "short segment" Barretts Esophagus, which was causing symptoms like you described. There's a few options for that, but it's another thing you might need to monitor as it increases the risk for esophagus cancer.

It's another diagnosis for sure, but I'm not sure if it's related to Crohn's. Have your upper GI symptoms given a closer look to be safe and certain. Gall bladder as mentioned might be another source. Good luck.