UNBEARABLE PAIN

Hello Everyone,

I am back again because I need your help with my pain. It is getting insane and I cannot figure out why. My UC is active but my doctors keep telling me that the level of my pain does not correspond with the amount of inflammation. My pain is an 8-10/10 but apparently the inflammation is not bad at all; localized to the rectum mainly. Whenever I get up in the morning, I have intense pain. Actually, if I take a nap during the day and I get up, I have intense pain too. Whenever I wake up, the pain is there. Whenever, I have a bowel movement, the pain is insane. The pain I'm getting is in the epigastric region and it is VERY deep and it makes it difficult to breathe. Apparently, the location of this pain is not common either for UC (according to my doctors). They've done just about every single test imaginable including dozens of endoscopies. I've been taking Dilaudid for quite some time now. I'm having to take 4-8 mg after a bowel movement for the pain to go away and to be perfectly honest, I don't even know how effective it is because I throw up after taking it some times. My doctor is not comfortable giving me so much pain medication because there is no cause. I always go through the pain medication too quickly because the dose isn't very effective. I don't understand why I'm in so much pain. I'm afraid of taking opioids. I'm in severe pain so I take them but I wish I didn't have to. Whenever I see my doctor, I tell him that the pain medication is not as effective as I'd like and he always says, okay then I'm stopping it because it's not working. I ask him for an alternative and he gives absolutely no alternative. That's absolutely terrifying. Every time I leave the doctor's office, I cry in my car because I feel like my doctor sees me as some drug addict. I just want the pain to stop. I've told him that I see him to stop the pain, not for a refill for the pain medication. If he has an alternative solution that isn't a narcotic, I'll try it. I'll try anything; I just need him to tell me what to do, I'll do it. He told me to go see a psychiatrist; I did. He said I seemed fine mentally. He said there was nothing wrong going on; I showed no signs of depression at all and my anxiety was well-justified. My doctor disagrees with him. I really don't know what to do from here. I just want to feel better. I've felt like this for all of 2016.

I would appreciate any suggestions you can give me, at all. If you've been through something similar, what did you do to overcome this?

Thank you to anyone that has taken the time to read my long story.

I assume you have researched this type of pain.
Have the docs, ruled out all of these possible causes.
How about your meds, could any of them cause the problem.
There are also possible other reasons than listed below, search on google.
Old Mike

www.epainassist.com/abdominal-pain/epigastric-pain

Old Mike said...
I assume you have researched this type of pain.
Have the docs, ruled out all of these possible causes.
How about your meds, could any of them cause the problem.
There are also possible other reasons than listed below, search on google.
Old Mike

www.epainassist.com/abdominal-pain/epigastric-pain

Thank you for the link, Mike. The doctor has ruled out all of the reasons under the document. I do apparently have gastritis but the doctors keep saying that the level of my pain does not correlate. I'm on Entivyo at the moment. My doctor said it takes months for it to kick in.

Careful with the pain meds,very addicting

Just because one doctor (yours) does not have an answer for your pain it does not mean another doctor cannot help you. Have you looked for other GI's who may have greater experience in IBD pain? Is there a college/teaching hospital in a day's drive? I understand you are housebound but for this purpose perhaps you could get there with enough pain meds.

I agree with trying medical marijuana but also consider whether a topical marijuana oil as a suppository might help eliminate the pain in addition to using oral MM.

Have you tried using mesalamine enemas? Ask your current GI for a script and try them. Just to see if they help at all.

Don't let one doctor's inability to help you stop you from looking for relief. They are not all the same. Some are far better than others. You need to find the right GI.

3timechamp said...
Careful with the pain meds,very addicting

Yes, I am extremely scared that an addiction could develop. Another reason, I want to stop using opioids but my pain is so severe. I'm so lost in terms of what I should do >.<

imagardener2 said...
Just because one doctor (yours) does not have an answer for your pain it does not mean another doctor cannot help you. Have you looked for other GI's who may have greater experience in IBD pain? Is there a college/teaching hospital in a day's drive? I understand you are housebound but for this purpose perhaps you could get there with enough pain meds.

I agree with trying medical marijuana but also consider whether a topical marijuana oil as a suppository might help eliminate the pain in addition to using oral MM.

Have you tried using mesalamine enemas? Ask your current GI for a script and try them. Just to see if they help at all.

Don't let one doctor's inability to help you stop you from looking for relief. They are not all the same. Some are far better than others. You need to find the right GI.

No, I haven't really looked at other GIs that have experience in IBD pain. My family doctor is prescribing the pain medication, not my GI. My GI says he's not experienced with pain medications so he won't write a script for it. He said only 1 doctor should be handling that and I guess my family doctor is that doctor for me. I've been through 3 GIs. The first one, I got stuck with during my initial diagnosis of UC; about 2 years later, I switched to a different GI at my university. When I moved back home from university, it became difficult going back and forth so I switched to my now 3rd GI. I have tried mesalamine enemas in the past but I will bring it up again. You are the 2nd person mentioning MM so i will bring that up to my doctor. I hope he is open to the idea. I feel like he's going to say that we tried Nabilone (Cesamet) and that didn't help much so neither will MM. What are your thoughts on that comparison? Thanks a bunch for replying and giving me the suggestions! Much appreciated!

My very first flare presented with extreme pain as well. Never figured out exactly what the cause was, but it turned out I was having a UC flare and cdiff at the same time. Warm salt baths helped at first, then ice cubes applied directly to the sphincter, eventually it got bad enough that I just went to the ER.

Ended up in the hospital for a week on dilauded and all the IV steroids etc. that go along with that. Pain was gone in a couple days.

I say go to the hospital. They can surely reduce the pain while you're there and will work around the clock to find an answer, as opposed to these random doctor visits over the course of days/weeks/months.

awesomecgreat said...
My very first flare presented with extreme pain as well. Never figured out exactly what the cause was, but it turned out I was having a UC flare and cdiff at the same time. Warm salt baths helped at first, then ice cubes applied directly to the sphincter, eventually it got bad enough that I just went to the ER.

Ended up in the hospital for a week on dilauded and all the IV steroids etc. that go along with that. Pain was gone in a couple days.

I say go to the hospital. They can surely reduce the pain while you're there and will work around the clock to find an answer, as opposed to these random doctor visits over the course of days/weeks/months.

I went to the ER. You were right. Stopped the pain right away. As you said, they can't seem to figure out what's causing it but the pain is a LOT better than when I walked into the ER. They're treating me with dilaudid and gravol etc. I've been here around a week too! I hope to be home soon. The only fear is that I don't know if this will happen all over again, seeing as I had no idea why it happened in the first place. It is reoccurring pain for me. I don't think it's c.diff because I'm not rushing to the bathroom (I'm actually constipated). Thanks a bunch for responding and caring! Means the world during these tough times (I'm sure you understand what I mean).

iPoop said...
Ulcerative colitis causes inflammation within the large intestine. Some of us get inflammation elsewhere in the body as an extra intestinal complication (veins, joints, and many other potential places). Have you had a CRP blood test to see if your numbers are high?

Hi iPoop! It's nice to hear from you again. Thanks for always responding to my threads. I did have a blood test done and my numbers were high. My doctor said that it's not a good indicator because I have active inflammation in my gut. He said they don't have any way of knowing where the inflammation is happening :/ I have a suspicion that I might have arthritis or some sort of joint inflammation because I've had horrible aches and pains in my knees and fingers and hips. My doctor doesn't seem to be taking it seriously. Perhaps, he doesn't think that's the case from the blood test but how can he be sure, right? I've found that ever since I got UC, no one takes any other health problems I may have seriously. Everything becomes, "it must be because of your colitis." I don't really know how to proceed from here. You all [many of the members on here] seem to know exactly what to look for or what to ask the doctor. I rely on my doctor so much and I think he's trying his best but I'm not seeing any results >.< Also, it should be noted that my GI won't deal with the pain aspect at all. My family doctor is handling that 100% because my GI refuses to deal with pain medication. Thanks again for responding!

iPoop said...
Yeah a CRP is going to be system-wide, other tests are more specific (like fecal calprotectin test, a colonoscopy or a flex-sigmoidoscopy).

Joint pains are one of the top two extra-intestinal complaints of ulcerative colitis patients occurring to about 20%, we can get inflammation of the joints known as arthritis and it can happen at any age (even when we're young). Often if the pains are UC-related then they often get better in remission and much worse during flares. There are several classifications depending on where the pain is coming from, and I would hope that a good gastroenterologist would be aware of, I'd look at the following about arthritis complications and IBD patients and discuss with yours: www.ccfa.org/assets/pdfs/arthritiscomplications.pdf

Occasionally, we've had users say the pains are related to a medication they're taking like Humira, 6mp or imuran. The user, Thoreau, most notably.

Thanks a bunch, John! I'm going to bring this up to my family doctor. Told my GI and he said this is something the family doctor should handle. I think I'm going to have to push him a little more if I want to get something done about this. Going to read the link you've provided right now. Thanks again! I really appreciate all of the help I can get.