Pain and crohns disease

[ajalily1]

Well Hi everyone! I am new here. Dx in 2005 with Crohns. Had surgery in 2006 after mulitple hospilitzations. Have been in remission up until a year ago. Now I'm back in the medical hell of this disease and I am feeling pretty depressed about it. Trying to stay positive but It is difficult when you feel like crap everyday. I have been hospitilized twice in the past two months, mulitple CTS, endoscopy, started Humira yesterday. My question is. I am having debilitating pain almost daily.(stomach, joint pain,and mouth ulcers) My GI doc will not prescribe any pain meds for me. Said I have to goto ER or Urgent care if needed. I went to Urgent care on Sunday.(in the same clinic as my GI by the way) and they referred me back to my GI because he is the one treating my Crohns. So I called my Gi and he referred me to my Primary Care doc. Who then sent me back to my GI. I am starting to feel like maybe I'm crazy. What are people supposed to do with Chronic pain? They treat you like some kind of drug addict. Or expect you to just deal with it... Has anyone ever experienced this type of treatment from their doctors? Its So frustrating. I finally took a hit of pot that I've had in my drawer for about 5 years and It made me even more worried than I already am about my condition. Although it did relieve the pain, the mental worry was worse. HA!

 

[Angrybird]

Hello and welcome to the forum.

I am sorry to hear that you are feeling so horrible at the moment Just to confirm had you been given any meds for your crohn's whilst you waited for the Humira to be started? Have any of your vitamin levels been checked such at B12, D etc? With regards to the pain on your tummy is it like a constant ache or a sharp stabbing pain? Unfortunately I have heard of others here getting help with pain from their docs and being passed from pillar to post, I am not sure how things work over there but is there anything like a patients group that you can complain to if you are not getting the correct care from your doc? Have you ever required/been given pain meds previously?

I will be keeping fingers crossed that you can be feeling much improved soon.

AB
xx

 

[ajalily1]

Hi! Thanks for responding... I have been on a prednisone taper. I have B12 injections once a month. The Pain is at my surgical site. And its constantly there. Mostly dull aching pain. But when I am flaring its like someone is stabing me in the stomach. I also have crohns in my mouth. So my lips,tongue,gums swell and then I have ulcers all over in my mouth and down my throat. That is almost worse then the stomach pain. I will look into seeking out a patient advocate at the clinic and see what happens. I have been prescribed pain meds when leaving the hospital. But unfortuantely the flares are so often now and intense I am having a difficult time leading a normal everyday life.. Hopefully the Humira will work and fast! Thanks again..

 

[Angrybird]

What type of op did you have in 2006? During the hospital stays what tests did the docs do? Have they definetly ruled out a narrowing from where you had your previous surgery?

 

[Jennifer]

Hi ajalily1 and welcome to the forum!

Indeed its best to treat the cause of the pain which you are doing through medication but that doesn't mean you should have to stay in pain the whole time while you're healing. Also wondering about a possible narrowing being an issue from the previous surgery and if those tests were recent enough to rule that out.

I've been bounced back and forth by doctors before. My GI also doesn't treat for pain nor does he give B12 injections and has me go to my GP for that. Well when I saw my GP for both they tried to send me back to my GI. I told them no, my GI said that they have to do it as they don't give B12 injections at their office and don't prescribe pain medication. So my GP said they'd do the B12 injections there but tried to send me to pain management. So instead of screwing around with pain management I saw a different GP. This one actually listens to me and is understanding of my situation and has tried a few different pain meds to see which works best for me. I've taken Norco but that was a bit strong so I was given Tramadol but that made me sick so now I take Tylenol 3 as needed. So far that one works the best for me.

We have to advocate for ourselves a lot and learn when to tell doctors no and make it their business to treat us. If your GI needs to have a talk with your GP to make sure pain medication is needed and that the GP needs to be prescribing it then so be it but more often then not doctors don't talk to each other. State your case to your GP clearly and if they wont budge then you could try another GP or have them refer you to pain management if needed.