How much pain?

[bandbmom]

I was just wondering if most of you hurt every day? My son doesn't seem to go through a day without hurting. The doctor keeps telling us that he will get to the point where he doesn't hurt every day, but it's been a year and a half and he hasn't got to that point yet. It just gets so frustrating seeing him in pain and not being able to do anything about it. I just wonder if his medicine needs to be changed to see if something else would do better. Any suggestions? Thanks!

 

[juicy24]

When I first was diagonsed I hurt every single day, there wasn't a day I didn't hurt and that went on for almost 3 years. But I went a long time without any medication to help with crohns so that part is a different story. But whenever they find the right meds for him, he will stop hurting. There will be days that he may still hurt but it won't be every day. You got to give the medication time to work. I know it is very hard to wait, I personally hate waiting myself, but if you switch meds before they have had a chance to work you may not find anything to help. The worse part is seeing someone you love in pain, just be there for him and try and reasure that things will get better! Another important part is to try and stay postive! Stress can affect this disease! Depending on how long he has been on meds if its been over 6 months I would get on the doctors to try something different. Good luck hope he will find something to make him feel better!

 

[ellipse22]

I was asking myself the same question the other day. I don't always "hurt" or feel the sharp pains etc. on a daily basis but I do have the constant bloating, uncomfortable, achy feeling. I am still undiagnosed and not on any medication. I wonder if that day will come. I told my husband that perhaps this is what my new "feeling normal" will be like. I don't like it and I am having a hard time accepting it. We just want to feel like ourselves because we starting getting the symptoms!

Good luck & I hope your son feels better soon!!

 

[lola99]

Before I got diagnosed i would have cramps off and on all day. Somedays worse than others. But I got pregnant and it went away. Then i flared and it just got worse and worse. Now that im being treated i have days where i barely have any pain. Its gotten better and better. I started out with asacol/prednisone/antibotics. Now its asacol/entocort/imuran. Im still having some discomfort but nothing like before and i've only been on imuran since july.

 

[Jennifer]

The medication should help within a couple days to a few months (depending on the medication and severity). Since its been so long though, I would not be happy if that were me and I'd demand a med change. If the doctor isn't willing to treat me properly then I;d find another doctor who is willing to do their job. Pain for that long means that its not being treated especially if you've notice NO change for the better.

 

[Jessica]

imo - If he's still hurting, then he needs more meds or different meds. Or he needs to scrutinize his diet / lifestyle a little more closely.

Something's gotta give.
<3

 

[DustyKat]

Where is your son's Crohns located?

Both of my children experienced pain until they achieved remission. Perhaps it was there every single day in varying degrees but they became so use it that they only complained when it became more severe. I certainly wouldn't be surprised if this was case, especially with my daughter.

In my children's cases surgery was the only option for them to solve the issue of pain, fistula's and abscesses. Sometimes medication won't cut it and removing the offending piece of bowel is the only solution to resolve the ongoing issues of pain and other symptoms. This may also be the case if there stricturing. I am only suggesting as something to consider if he has the type of crohns that manifests in this way.

Dusty. xxx

 

[new2crohnsMH]

I experience pain in some sort each day, whether it manifests in my gut or in my back, which my understanding is the Crohn's may be exacerbating. Various degrees of pain as well. Most days I can deal with it, but there are usually three to five days a month that I'm in bed because of the pain.

I can sympathize because I am still on the hunt as well for a medication that will help and get me my life back. I miss it, a lot.

 

[Crohns08]

I was on percocet for about a month straight if that gives you an idea of pain. Sometimes the percocet didn't even touch my pain and that's when I had to be hospitalized. It varies person to person with the severity of the disease. My condition used to be mild and I barely had any symptoms at all and now I have a moderate to severe case.

 

[LindaS]

When I'm in remission, I have no pain. However, now that I'm flaring, I usually have pain periodically throughout the day. Sometimes it goes away with a bowel movement. It fluctuates between severe and moderate. I am now waiting for the methotrexate to work, as I started it 4 weeks ago.

If your son has been having this pain for over a year, he might need to try a different medication.

 

[bandbmom]

His Crohn's is in the ileum. We just had blood work done and his CRP level was .4. I just don't understand why he still has so much pain when his inflammation level is so low. I do know that he has a lot of trouble with sinus drainage and that seems to make things worse. I just don't think we've achieved remission yet. I think that his doctor thinks I am exaggerating his pain. But, Blake has a very high pain tolerance and he doesn't complain unless the pain is pretty bad.

 

[DustyKat]

Where is his pain and what is it like?

My daughters bloods were never an indicator of what was happening with her. She had all the physical symptoms and the bloods always returned normal results right up until the night before emergency surgery. My son on the other hand had mild physical symptoms compared to Sarah and yet his bloods showed a very, very different story.

I would look at what is in front of you, the bloods obviously aren't reflecting what you see but that does not mean something isn't going on. Do you keep a diary? If not have a look at this one.

Perhaps he could have a CT/MRI scan or CT Enterogram done to check things out.

Dusty. :heart:

 

[sunflower]

A year and a half should be enough, I would think. My old doc would tell me that pain is just part of Crohn's - but if it interferes with your day or night, it is too much.

Bloodwork doesn't always tell the story and a good doc will know this. If he doesn't, you must remind him of that. My ESR rarely goes over 27 any more - it was 63 when I first got diagnosed. I can be inflamed and ulcerated from one end of my colon to the other and my bloodwork looks good. I would just tell doc that it was time for a scopy to see for ourselves what is going on. Once a year, at least, is not too much.

 

[muppet]

What does your doctor say about his inflammation markers? Are they still elevated after a year and a half of therapy? He should get to the point where he's not in pain every day, but honestly, and perhaps a little sadly, I think a lot of us just build a tolerance to the pain over our lives and stop noticing all of it. It becomes background noise.

Still, he shouldn't be debilitated by pain if his meds are working. A year and a half with no remission is a long time. If the doctor doesn't satisfy you on this point, consider finding a new specialist. I'm starting to sound like a one-note horn about this but it's the single most important piece of advice I can give.

 

[sunflower]

So true muppet. It is SO important to have a doctor that listens, cares and acts on your behalf. If you don't have a good doctor on your side, you aren't going to get as good as you can get.

 

[loulou]

Hi there , I was just wondering has he ever been on a purely liquid diet to enable his bowel to rest? IE fortisips , Ensure or the like , as this can sometimes help not only by resting the bowel as this means his bowel doesn't have to work as hard to digest his meals , I know it can be boring being on such a diet but it only needs to be short term, or if his GI or dietition has ever suggested a low residue diet you can get info on what sort of things are included etc in a low residue diet from the internet but his GI should be able to provide him/you with this also. has he ever had any surgery for CD or when was his last MRI / CT scan etc ? I ask this as , as you are probably aware things can change with CD I would suggest that he sees his GI soon as no one should be in pain like that as there are many many drugs etc that can help he may just need his meds altering in the mean time try things like heat bags on the abdomen warm baths etc I know that doesn't solve the issue but it may make him more comfortable until he sees his GI . I do hope he gets some relief soon , I do understand how he feels I myself (I have very severe agressive CD) am on very strong opiods to help with pain , hopefully trying a liquid diet or low residue and or looking at the meds he is on at present will have him somewhat pain free very soon Good luck with this and God Bless .

 

[LtHuff]

I have been diagnosed for two years now and I pretty much have pain/bloating daily it seems. Its a pain, I get tired of "whining" about it as I am sure my wife does as well so I try to keep it to myself, but sometimes its just too much.

Good luck with getting it under control!

 

[bandbmom]

His pain is usually on his lower right side. Sometimes it's not too bad, but sometimes it keeps him from doing what he wants to do. He has had some times when he doesn't hurt every day, but those times never last very long. His doctor doesn't mention the inflammation markers. He only checks the CRP levels. The only time he's been on a liquid diet is when he was first diagnosed. They thought that his pain might be coming from his appendix or from a blockage. He was in the hospital for 4 days and they kept him on a liquid diet for those days. Other than that his doctor has never really mentioned his diet. He's had a colonoscophy, MRI, and a CT scan with follow through.

 

[mike316atl]

I was admitted 2 months ago. I have been in pain pretty much everyday since then. I am on hydrocodone 2-3x a day. It helps with the pain, but not the cramping.

 

[Artificial]

His pain is usually on his lower right side. Sometimes it's not too bad, but sometimes it keeps him from doing what he wants to do.

Hi Bandbmom,

This is the same as me! I have been in pain pretty much everyday for 8 months. I'm currently waiting to be put on some different medication and have recently put myself on a low residue diet to to try and help.

Hope your son gets some relief soon.

Rachel

 

[25times]

I've had pain in my lower right side all throughout my life. I can literally pin-point the flares I've had since I was 6, just because I can remember the pain so vividly. I only got painkillers this year. I don't know how I dealt with it for so long without anything. I remember being in the emergency room, crouched by a chair, holding my stomach and bawling my eyes out. The doctors wouldn't even offer tylenol. This April, I went into the ER with the same pain and other symptoms and was given morphine. Now, anytime I go into the ER, I have a bed within ten minutes and strong painkillers within 20. They finally understand that I'm in horrible pain and I can not deal with it myself. I'm in pain every single day, whether it be stomach pain (most often) joint pain, or back pain. Unfortunately, narcotics cause constipation, which causes more pain, which needs more painkillers, more constipation, ect.. I'm running out of options here. Thank god I start remicade this week. My current medications are not working as well as they should, and I started flaring again as soon as I tapered the pred down to 30mgs. So I'm back up on 40 until the remicade infusion, then I can taper again. You should talk to your doctor about biologic therapy. Apparently it works very well, and it's a much safer drug to be on long-term, than prednisone and other steroids.