Is pain the new normal with Crohn's disease?

[Nutmeg01]

Hi all,

I was diagnosed with Crohn's of the terminal ileum in August by colonoscopy after a year of abdominal pain, firstly diagnosed on scope as stomach and duodenal ulcers.

I am on budesonide 9mg and have started imuran two weeks ago. The imuran takes 12 weeks to work, but they are decreasing the budesonide in a week from 9mg to 6mg, and the next month to 3mg. The pain is bad. Really bad, and that's on the higher dose. I don't know what I will do on the lower dose, I feel that I will end up in hospital again because it's unbearable as it is!

I initially felt better on the budesonide but in the past month it's back to the level of pain I was in before going on it. Has this happened to anyone here?

I don't have diarrhoea, and never have had it, thankfully. Does anyone else here not have it? The pain is after eating, it feels like the food is scraping my intestines, that's the only way I can describe it. Severe pressure to pass stools but nothing comes for hours and then it will look like a normal bowel movement (sorry if tmi). It doesn't matter what I eat, I had just a chicken breast yesterday and woke up in excruciating pain.

I hear so much about flare ups and remisson, the consultant said I am in remission, so is this pain just what I will have to live with now?

My c reactive protein has never been elevated even at the start when I was in hospital in agony even with morphine. The consultant said the level of pain I'm experiencing is not in line with the mild Crohn's. Nothing mild about the pain!!!!

I work in a busy and stressful job with a lot of responsibility, I've just finished my last day there. I have had to leave, I can't go on with this pain and I've had enough of curling up in the back crying in pain. This leaves me in a pretty sure financial situation.

The skin on my abdomen has become completely discolored because I have a hot water bottle strapped to me 24/7. It helps ease the pain a bit!!

Does anyone have some advice? All comments most welcome.
All the best.

 

[scottsma]

Hello and welcome.Luckily I've never had that level of pain for as long as you have.I can say it's NOT normal and you really need to see either your GP or GI or IBD nurse.The fact that you've had to give up working says a lot.I know there will be others online soon who will offer their advice and support.We all have different experiences and views.I hope you get relief soon,please keep us updated as their are bound to be others in the same predicament.Oh,and there's no such thing as TMI,not on here anyway.Feel better soon.

 

[ronroush7]

Welcome. I agree with the above post. You need to see either ine of your doctors or the ibd nurse.

 

[Squirrel#1]

Welcome. I agree with the above post. You need to see either ine of your doctors or the ibd nurse.

I fully agree with previous posts. My pain is controlled with low dose tramadol. There is no feeling high or loopy. Good luck!

 

[Jabee]

This level of pain is not normal—even with crohn’s. By not normal I mean you shouldn’t be in so much pain, nor should your GI or GP allow you to remain in pain. How does your GI know you are in remission? Have you had testing that shows the inflammation is better? It’s pretty easy to say “take these and you’ll be fine”, but not everyone responds well to all medications. I’m also wondering if you are experiencing pain because of the imuran. Mercaptopurine gave me severe pancreatitis and that was certainly unbelievably painful. Please return to your GI and (try to) explain that you feel worse, not better. If he doesn’t listen, than can you be referred to get a second opinion?

 

[smada15]

I feel you.

It feels like this will be the normal feeling forever right now and it’s unbearable.

I’ve been career driven since I was a kid. Done multiple degrees held down multiple government jobs only to now be thinking of resigning on the worst of days because it feels too hard to even hold down a job anymore.

It’s the worst. Really hope there’s a day when some medication or something works (or in my case doctors hear me!)

 

[cmack]

Hi all,

I was diagnosed with Crohn's of the terminal ileum in August by colonoscopy after a year of abdominal pain, firstly diagnosed on scope as stomach and duodenal ulcers.

I am on budesonide 9mg and have started imuran two weeks ago. The imuran takes 12 weeks to work, but they are decreasing the budesonide in a week from 9mg to 6mg, and the next month to 3mg. The pain is bad. Really bad, and that's on the higher dose. I don't know what I will do on the lower dose, I feel that I will end up in hospital again because it's unbearable as it is!

I initially felt better on the budesonide but in the past month it's back to the level of pain I was in before going on it. Has this happened to anyone here?

I don't have diarrhoea, and never have had it, thankfully. Does anyone else here not have it? The pain is after eating, it feels like the food is scraping my intestines, that's the only way I can describe it. Severe pressure to pass stools but nothing comes for hours and then it will look like a normal bowel movement (sorry if tmi). It doesn't matter what I eat, I had just a chicken breast yesterday and woke up in excruciating pain.

I hear so much about flare ups and remisson, the consultant said I am in remission, so is this pain just what I will have to live with now?

My c reactive protein has never been elevated even at the start when I was in hospital in agony even with morphine. The consultant said the level of pain I'm experiencing is not in line with the mild Crohn's. Nothing mild about the pain!!!!

I work in a busy and stressful job with a lot of responsibility, I've just finished my last day there. I have had to leave, I can't go on with this pain and I've had enough of curling up in the back crying in pain. This leaves me in a pretty sure financial situation.

The skin on my abdomen has become completely discolored because I have a hot water bottle strapped to me 24/7. It helps ease the pain a bit!!

Does anyone have some advice? All comments most welcome.
All the best.

I know for sure that you need to see the doctor again and explain this terrible pain. What I don't know is your diet, I am always sure to drink 2- 2.5 litres of water a day, I also eat a whole food, plant based diet. I have had constipation before, but since I have made these changes it is a thing of the past.

Give me a pm if you want to talk, I'm more than happy to try to help.


Your new teammate,

Chris

 

[ronroush7]

I feel you.

It feels like this will be the normal feeling forever right now and it’s unbearable.

I’ve been career driven since I was a kid. Done multiple degrees held down multiple government jobs only to now be thinking of resigning on the worst of days because it feels too hard to even hold down a job anymore.

It’s the worst. Really hope there’s a day when some medication or something works (or in my case doctors hear me!)

I hope you feel better soon.

 

[Squirrel#1]

I hope you feel better soon.

Have you tried drinking boost or even slimfast? They have lots of vitamins. It may help getting your strength up.

 

[Deleted member 431298]

Hi Nutmeg01. Thanks for sharing your situation with us, I hope you will find relief soon.

I think you should take Jabee's comment very seriously, and talk to your GI about this pain right away. The only time I ever experienced something like what you are describing was when I was put on Imuran, and got pancreatitis. When I told my GI about it, he asked me to stop right away, and the pain resolved within a week.
Also, have you had a calprotection stool test done I wonder? If it is elevated it is an indication of active CD.

 

[campingamy]

Hi, have you tried Organic Apple Cider Vinegar for your Crohn's? You want to start out with one teaspoon of organic apple cider vinegar in a eight ounce glass of water or juice. And if you need a stronger dose, slowly work your way up to one tablespoon of organic apple cider vinegar. Do NOT start out at one tablespoon as this will bind you up. Your insides needs to adjust to it.
I had Ulter Colitis my whole life, by the age of 30 I was so bad off they had to remove all of my large colon and they gave me an internal J-pouch. They told me I would be cured. Well after surgery my Ulter Colitis turned into Crohn's. Like normal they pumped me full of meds. Five surgeries later and still on meds. I had enough I went off my meds. Switched to an all organic dieted. And searching the internet for a Organic cure. I stumbled across the organic apple cider vinegar. I though what the heck it can't hurt. So I gave it a try and to my surprise it really did help, the pain and ulcers improved alot. I worked my way up to drinking one tablespoon of organic apple cider vinegar in a eight ounce glass of water three times a day. In about a week I really started noticing a difference. I don't like the tasted of vinegar so after I started felling better I stopped taking it. Now I only take it when my ulcers start getting bad again. I'm now 47 and still med. free with only mild pain. But still searching for a cure.

I know your thinking "Vinegar" that's acidic that will hurt my ulcers, I though the same thing but I was in so much pain at the time, I know I had to do something and the research I did on it looked promising. Please trust me the vinegar will not hurt your ulcers, please give it a try. You have nothing to lose besides the pain.:luigi:

 

[ronroush7]

Have you tried drinking boost or even slimfast? They have lots of vitamins. It may help getting your strength up.

Maybe Boost Complete. Ensure has carageenan.

 

[David]

Greetings and welcome to the community. I don't have much to add to what was shared above, but I did want to welcome you.

I wish you all the best.