Looking for help with pain

[Adic D Flux]

Hello Good People of the Forum,

I’m sorry that the very first post I create here has to be one with such a negative and aggressive tone but I feel as though I am starting to loose control and really don’t know what other options I have.

I will try and stick to what is most meaningful to the post and not overload you with what brief history I have had.

I was recently diagnosed with Crohn’s Disease (mid January of this year) after a couple week stint in the hospital and since coming home and returning to work I have had a hard time to say the least with adjusting to everything. The pills, the doctor visits, the strange side effects due to the medication and mostly the pain.

I am currently seeing a GI located near where I work in Scottsdale, Arizona and I am really having a hard time with him but I don’t know if it is just the doctor or if all GI’s are going to treat me this way due to my age (I’m 24) or some other factor I am unaware of.

Currently I am taking Pentasa, Entocort EC, and Amoxicillin. When I first got out of the hospital they had me on tramadal (sp?) for pain which really didn’t do much of anything for me other than slightly take the edge off and make my skin itch.

I have since run out of pain medication if that is what it was and at first was doing ok but now it seems as though the pain has returned full force (worse than before I went into the hospital). I am eating very little to nothing at all. I don’t know if the pain has increased because of the medication I am on, the stress from all this shit, or because or something else I am not aware of.

I have mentioned this to my doctor and his answer to me is that we can try putting me on a stronger steroid but that he does not want to give me anything for the pain because of my age and the risk of developing a dependency.

My next visit is not for another 2 weeks and I really feel like I am in a corner. The pain IS increasing by the day whether I eat or not. It isn’t a light pain it comes in waves and usually lasts between 5 to 10 minutes at a time at a pain level of about a 9 or a 10. It then lowers back down to about a 3 or a 4 and stays there for the majority of the day and night. This is happening on average about every hour.

Now I don’t know if this kind of pain is normal or not for this condition. By the way the doctor is acting I am guessing it’s not. He keeps telling me that with Crohn’s you have good days and bad days but the pain will pass. I have tried to do as much reading as I can (when I can) online through forums like these or on wikipedia but I still feel like there is a lot to learn.

My main concern right now is the pain, I feel like it is pushing to close to unbearable and I don’t know what to do. The doctor doesn’t seem to think it is that bad even when I tell him it is. I was reading on here that some people were smoking weed so I was thinking of trying to get my hands on some of that and trying it but I’m also afraid that might make things worse.

Does anyone have any suggestions on anything I have said? I am all ears right now. Should I look for anew doctor, do you have any special diets particularly when you are in a lot of pain, if you are in pain. Should I try going to another doctor for the pain and keeping the GI, should I check myself back into the hospital?

Sorry this turned out to be longer than I thought and it is probably really scattered even though it appears to make sense when I read it.

-D

 

[TammySue62]

Hi Acid D Flux
Welcome to the forum.
Sorry to hear about all the problems that you have been having.
The people here are quite warm and friendly.
If the pain is that bad I would consider checking yourself into the hospital.
And it dosnt hurt to get another opinion from another Dr. if your not happy with the current one now.
I also suffer from back pain I think that just comes along with having CD. and a lot of other symptons.
Currently I am taking dilaudid 12mg or I swicth to oxycodone IR when I need fast relief.
But I am no Dr. so I would ask or inquire about these drugs first.
You will get some advise from other people on this forum that will help you along your journey with Crohns Disease.
Goodluck

 

[ruthymg]

Hi Acid D Flux and welcome to the forum. I empathise with your situation and know how you must be feeling. I had 6 years of tests before I was diagnosed with terrible pain that was so bad at times I would pass out and nobody heard me either. Its important that you keep telling your doctor, you're not happy with the current situation and you need pain relief, at the end of the day, you chose what you want to do with your life, not your doctor. I would be really angry if my doctor told me he thought my pain wasn't bad enough and he didn't want me to become dependant, how dare he, thats your choice, not his. I would seriously consider trying to see another doctor. As far as your meds go, you have only just been diagnosed and so at the moment its trial and error. It takes time to find the right meds that work for you. It is sensible to try with the milder drugs first though, you can always move onto the stronger ones later on. I too take Pentasa and have done for about 6 years, its a nice drug in that it doesn't have any common nasty side effects. Its also good at maintaining remission periods and so its a good maintenance drug. The steroid is to try and reduce any swelling, this won't be instantanious and so it may just be that you need to take the drugs a while longer before you see any positive results. In the UK, GI's don't really tend to prescribe antibiotics for treating crohns unless we have an additional problem like a fissure or fistulas. I think its important that whilst you are in this period of trying to get this current flare under control, you need to have good pain killers. It is clear from your post that you are quite distressed at the moment and excessive unneccessary pain will exaserbate your stress levels making your flare worse. You mention that you are having problems with eating, at the moment, I would reccommend eating bland easily digestable foods, like chicken, rice, white fish, soups/broths or even pureed food, see if that helps. Some crohns sufferers find it difficult to digest red meats, spicy foods, milk and dairy foods, and high fibre or fatty foods, you could try keeping a food diary of the foods that seem to make you worse and eliminating those foods. These eliminations won't necessarily remain out of your diet permanently, just while you are flaring, then once things settle down, try reintroducing them. Remission periods are possible but can take time to reach so have faith, I know its difficult but you will get there. I hope this helps a little. Keep us posted, there is plenty of support available to you here and so feel free to vent whenever you need to.


Ruth