Frustrated and Exhausted

[MichelleE]

I have been having the same symptoms now for going on 9 months. Things seem to be getting worse. It is strictly pain, burning sensation mostly in my right side however sometimes on the left side. It sometimes feels like it is burning right through to my back and/or down into my leg. They started in January thinking it was something to do with my uterus (as I wasn't having typical crohn's symptoms), then after 2 months of varying antibiotics and tests they sent me for a CT scan as my MD felt a mass on my left side. The CT showed 15 cm of acute crohns. So back on the prednisone, and Imuran in April. Here I am now after 2 colonoscopies (first one showing a lot of inflammation, ulcers, etc) however 2nd one showing a drastic improvement. Still some swelling but no more signs of inflammation. However my pain hasn't changed at all. If anything getting worse. My GI is a bit confused. He is thinking outside the box thinking maybe it isn't all crohns. He is going to start me on a trial period of Remicade to see if it will work.
Has anyone else had any similar pain with no crohn's symptoms at all.??? I feel like I've been poked and prodded for 8 months to get absolutely no where. I feel like SCREAMING.

 

[Riverchick]

I totally understand! I am in the same boat. I had a bowel resection in '08 and my gallbladder removed in '11. I am still in pain and tried 3 treatments of Remicade. It did not help me so now my Dr. Wants to try Humira and 6MP together. I am concerned about being so immune suppressed because I work in healthcare surrounded by sick patients. I pulled up my big girl panties and told him I wanted a consult with a surgeon just to see if my pain might be from adhesions. Adhesions is the reason my gallbladder had to be removed so I'm thinking that is the cause of my pain again. Maybe you might have adhesions? I am sorry you are in pain. It is nice to know though that I am not the only one that feels this way.

 

[MichelleE]

I was in a bad car accident 20 years ago and had some fairly major stomach muscle and tissue damage from the seat belt, fractured back. Not long after I had an appendectomy... I have been questioning whether there is maybe some scar tissue or adhesions causing some issues from the outside of my bowels since the insides of them seem to be healed. How do they test for such a thing though?

 

[Riverchick]

Sometimes CT scans show adhesions but they might not know until they look inside. I kept complaining of upper quadrant pain for months 2 yrs ago and my Dr said my Crohn's seemed to be under control. My pain got so bad I ended up in the ER. My scans were all negative. I ended up in surgery to have my gallbladder out. My gallbladder was covered in adhesions! The adhesions occurred in just 2 years from when I had my bowel resection. Some people are just prone to them. Now they do say that every time they go inside they run the risk of causing more so it is not something you want to ask for if not needed. I am going tomorrow just for a consult and exam to see what the doctor thinks. He can tell slot just from a good exam. The last thing I want is unnecessary surgery because I need to work and have very limited benefit time, not to mention the possibility of a potential colostomy bag.

 

[MichelleE]

Thanks for the info. I am trying to do as much learning myself so I can ask as many questions as needed when I go see my GI again. I wish you luck on your docs appt. I hope they have some good news for you.