• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Severe abdominal pain

So it's now over a month since I had surgery to resect my TI and cecum. I experienced a lot of post op pain being readmitted twice into hospital after the initial stay. They unfortunately couldn't put the pain down to anything but they said it should subside.

Now here I am, still in a ridiculous amount of pain (8/10!) and feeling absolutely miserable. I was just at the ER for cystitis and also abdominal pain but I got the all clear and was sent home. Literally in the car home, the pain elevated a lot more and now I'm laying down stiff and sore. I can't do anything!

What do I do?! I feel like I'm just crazy and that the drs and my family think I just want medication, attention or something. All I want is to be able to be like any other normal person! I'm literally going insane.

I'm currently taking:
Azathioprine 125mg daily
Flagyl (1 tablet daily)
Nilsat (for the oral thrush the Flagyl gave me! Awesome!)
Amoxcil (500mg 3 times daily)
Paracetamol, Oxycodone, Ibruprofen, Buscopan - when needed (which is a lot)

I've even started doubling the oxycodone (5mg tablets) because it's not even cutting the pain.

If anyone has a different perspective on this or has a suggestion on what I should do, I'd really appreciate it. I need to go back to work (which is physically demanding) so I can continue to pay rent! No need to worry about paying for food though because it hurts to even eat!

Sorry for the winge!
 

DJW

Forum Monitor
That's just not right. 8/10 is an ER visit. Does it feel like incisional pain or blockage pain? Is it possible you've strained something.

Are you eating, drinking and walking? Everything working fine? Could it be gas pain. Some of my worse pain post op has been from gas. Not much can be done for that other than walk (oxy doesn't do anything for my gas pain)

I hope you feel better soon.
 
Go back to your hospital and tell them you want seen by the surgeon who did your op. I ended up have a second surgery 3 months later as I had a knot of scar tissue formed in my TI and a large collection of fluid build up outside my abdominal wall.
Not saying this is whats wrong with you but elevated pain level is not normal and I know it is very unpleasant.
After my surgery I was very sore for over a month and then all of a sudden it started to ease off.
Please try to relax and take a breath to think about what you want to say. I went to my GP first and was sent to the hospital three times before they took me seriously. Im glad i persevered as I am now almost without any pain ( almost ) .
Best of luck Peter
 

Trysha

Moderator
Staff member
You do need some professional help from the surgeon and perhaps a pain control specialist
Have you considered that it might be you are taking too much of a variety of painkillers
It is documented evidence that codiene and morphine derivatives can cause severe abdominal pain.
I know this because post op hemicolectomy the morphine caused very severe abdominal pain
Which stopped when the drug was discontinued.
There is very little I can take now and have to endure pains.
Tylenol (paracetomol) is about the only thing I am able to tolerate.
First of all though it is necessary to eliminate any other cause for your pain
Feel better soon
Hugs
Trysha
 
So it's now over a month since I had surgery to resect my TI and cecum. I experienced a lot of post op pain being readmitted twice into hospital after the initial stay. They unfortunately couldn't put the pain down to anything but they said it should subside.

Now here I am, still in a ridiculous amount of pain (8/10!) and feeling absolutely miserable. I was just at the ER for cystitis and also abdominal pain but I got the all clear and was sent home.

I'm currently taking:
Azathioprine 125mg daily
Flagyl (1 tablet daily)
Nilsat (for the oral thrush the Flagyl gave me! Awesome!)
Amoxcil (500mg 3 times daily)
Paracetamol, Oxycodone, Ibruprofen, Buscopan - when needed (which is a lot)
Hi Lara, when you say Cystitis I assume you mean of the bladder. My Grace has this and it in itself can cause MAJOR pain! Have they checked your kidneys? As you know IBD and Cystitis can cause some kidney issues, which can cause lots of pain.

Also like said above, Ibruprofen (NSAID's) can be a big no-no for people with Crohn's. Plus those pain meds can cause constipation so make sure your drinking lots of water.
Oxycodone can also be harsh but I don't know to much about that drug.
Grace is on Tramadol and is works for her.
 
Thank you all so much!
The pain has been there ever since the surgery. There are good days and very bad days, to the point where I can't breathe and am having full blown attacks. I definitely haven't been eating normally (I've had a mcflurry and a bowl of rolled oats in the last 48 hours), feel extremely bloated (it's becoming more noticeable as I lose weight- it looks like a hard beach ball under my skin), have had to take movicol daily to keep things moving and have had an array of other problems associated.
The oral candida looks like it's getting worse visually and my eyes have been very irritated ever since last night too (feels kind of like conjunctivitis).

It feels more like a blockage pain or organ pain. The incision looks great!

PVail that's terrible! I hope you're feeling better now! I'm currently waiting for my surgeon to come back from his break - he conveniently went away about 4 days after my operation so he hasn't got any idea that I've been in this pain..

That's interesting about the variety of drugs actually. I generally only take paracetamol then Oxycodone if the pain gets worse, but when it's been unbearable I've taken all of those at once. I have mentioned it to my GI and the drs at the hospital and there answer was to manage my pain however it worked - then continued to prescribe my endone (which I don't think is great considering it's supposedly addictive and has adverse side effects).

Farmwife - I'm sorry to hear about your little one :( cystitis is terrible (it drives me crazy!). When I spoke to a dr last night, they were actually confused as to why I hadn't been referred to a urologist as I keep getting recurrent episodes of it. Does your Grace get it a lot? I try everything to avoid it but it doesn't seem to work. No checks were done on my kidneys but they did say my bloods were great and that if I had any lower back pain and/or nausea/vomiting, to come back in. It's hard to distinguish what's associated with Crohn's vs other problems.

Thanks again, I will call my GI again tomorrow if I make it through the day and night without going back to the ER.

I hope you are all well, sending positive thoughts! xo
 
Lara you're on way too much medicine to be in that much pain! Definitely avoid the ibuprofen. It's not your friend. And the eyes might be thrush too, I've had that (before Crohn's Diagnosis). It might mean you need a systemic anti-fungal like Diflucan if your GI thinks you can tolerate it.
The Abx and thrush are surely wrecking your gut flora too which compounds the suckiness.
No more oatmeal or other whole grain & high fiber meals for now! Have some easy white carbs and get your doctor to help you get this pain managed. Hugs!
 
Hi Lara, yes I'm surprised they haven't sent you to an Urologist.
That's comparable to a family doc treating ibd and not a GI.
Cystitis can have different causes and their is an autoimmune type.
We believe Grace has this type.:(
I'm sure an Urologist would have offered more d advice and definitely wanted kidneys checked. At least that's what Grace's urologist would say.... always have them check the kidneys.

How are you today?
 
Lara, How long have you been on Azathioprine?

If it is a more recent addition (as in weeks) you could be having an attack of your pancreas. This is a 10 on the pain scale type of pain.

Although odds are it is a surgical issue. I wouldn't wait it out.
 
Thank you all so much!
The pain has been there ever since the surgery. There are good days and very bad days, to the point where I can't breathe and am having full blown attacks. I definitely haven't been eating normally (I've had a mcflurry and a bowl of rolled oats in the last 48 hours), feel extremely bloated (it's becoming more noticeable as I lose weight- it looks like a hard beach ball under my skin), have had to take movicol daily to keep things moving and have had an array of other problems associated.
The oral candida looks like it's getting worse visually and my eyes have been very irritated ever since last night too (feels kind of like conjunctivitis).

It feels more like a blockage pain or organ pain. The incision looks great!

PVail that's terrible! I hope you're feeling better now! I'm currently waiting for my surgeon to come back from his break - he conveniently went away about 4 days after my operation so he hasn't got any idea that I've been in this pain..

That's interesting about the variety of drugs actually. I generally only take paracetamol then Oxycodone if the pain gets worse, but when it's been unbearable I've taken all of those at once. I have mentioned it to my GI and the drs at the hospital and there answer was to manage my pain however it worked - then continued to prescribe my endone (which I don't think is great considering it's supposedly addictive and has adverse side effects).

Farmwife - I'm sorry to hear about your little one :( cystitis is terrible (it drives me crazy!). When I spoke to a dr last night, they were actually confused as to why I hadn't been referred to a urologist as I keep getting recurrent episodes of it. Does your Grace get it a lot? I try everything to avoid it but it doesn't seem to work. No checks were done on my kidneys but they did say my bloods were great and that if I had any lower back pain and/or nausea/vomiting, to come back in. It's hard to distinguish what's associated with Crohn's vs other problems.

Thanks again, I will call my GI again tomorrow if I make it through the day and night without going back to the ER.

I hope you are all well, sending positive thoughts! xo
You could be making yourself worse by eating dairy products specifically the lactose (sugar naturally occuring) in milk products and also if your Crohn's is due to you being infected by MAP then dairy products still contain the MAP bacteria even once they end up consumed by us.


As for the medical staff you see advising you to manage your pain however it works that is very dangerous advice (bordering on incompetence given your known medical condition - Crohn's). Taking Ibruprofen is well known to make things worse for people with our condition due to the other meds we are often put on (steroids).

I would seriously question why anyone in the medical profession would give that advice on pain management to someone with Crohn's - sounds like they aren't the right people for you to be seeing.

It is bad enough for us all having to suffer the condition but we are very much at the mercy of people who really and honestly do not know how to treat the condition correctly - this makes it all the more important for us to gain as much understanding into the condition for our own sakes.
If nothing else, to at least know when we are being mistreated and misinformed and given wrong, dangerous advice.

I hope this helps as it is worrying to see others on here suffering more than they have to.

When you have Crohn's food can be a weapon against you so watch out for certain foods that are known to be problematic for certain people with Crohn's. Not everyone of us avoids exactly the same foods as only certain foods end up on each of our bad lists - this is something you have to figure out for yourself, but honestly watch out for dairy products and try to work out if they are something that badly affects you as if you make yourself suffer through bad food choices due to not knowing - that is tragic.

I firmly believe the most important aspect of managing our condition is to learn how to minimise our suffering first and foremost.

My post is very opinionated and for that I am sorry.
Many people may disagree with what I have typed, the problem is if I go in and edit it to make me look like less of an ass, the actual useful parts will be lost or wont make sense!

So I will just leave it as-is and if anyone disagrees with my approach fair enough. Each to their own.

If you do want more info and understanding Lara (and anyone else for that matter) there are many excellent threads here on this forum regarding actual lessons learnt already by other Crohnies regarding what is a good thing and what is a bad thing to do when trying to handle and manage this condition.
I do appreciate though that this forum is huge with loads of threads and it is a challenge to actually find the important posts among all the other posts.
 
Lara I feel for you being in so much pain. You are especially unlucky that your surgeon went away and is not aware. It's totally appropiate you've been going to emergency given the circumstances, but sitting down with your surgeon, GI or both gives you all the time and space that you probably need to throw at this problem. Ask for an out of clinic urgent appointment.

You had emergency surgery didn't you? Whether this is involved in the root cause of your pain or not, it won't be helping things. You were probably a lot sicker than the average planned case. The trauma of surgery on top increases the complication risk and can make recovery challenging. Hopefully it can be avoided but going back in like in pvail's case may be a last resort given the limitations of scans. Whereabouts in your abdomen do you get the pain?

Also on the cystitis front have you heard of interstitial cystitis? It is where there is chronic inflammation of the bladder and is more common in young women and those with various abdominal/pelvic diseases. It makes ordinary bacterial cystitis more frequent, so you suffer with the the infection but can also suffer from the inflammation alone. Anyway it's just a thought. A uro can help you with it.

I wish you the best of luck with getting on top of the pain and recovering more peacefully.
 

UnXmas

Banned
That's interesting about the variety of drugs actually. I generally only take paracetamol then Oxycodone if the pain gets worse, but when it's been unbearable I've taken all of those at once. I have mentioned it to my GI and the drs at the hospital and there answer was to manage my pain however it worked - then continued to prescribe my endone (which I don't think is great considering it's supposedly addictive and has adverse side effects).
Oxycodone is terribly addictive. If you want to avoid addiction, don't take oxycodone.
 
Hi everyone,

Thank you for your posts. The pain is less severe then it previously was, though there are still days where it appears. I still don't know what causes it (it's not food as I get it even when I haven't eaten for days/after eating too).

My surgeon called and said he'd had a look at my scans and blood work, and that he thinks that everything is fine. He mentioned a few possible reasons that are not uncommon. Fingers crossed he's correct.
Still occasionally taking paracetamol and Oxycodone, though i'm really trying to stay away from the oxy as much as possible.

I've got my first day back at work tomorrow - I think I'm more nervous than what I was for my surgery!
On that note, is there any sticky note under the surgery tab that mentions things to expect post op? I may have missed it but besides from what my surgeon told me (basic pain, being tired etc), I think it would be nice to have a thread that describes a normal recovery. As bad as it sounds, it's sometimes comforting to know that others have or are going through the same thing.
 

UnXmas

Banned
There is this thread: http://www.crohnsforum.com/showthread.php?t=30212

It's people's experiences of surgery, normal or otherwise, but if you want to start one specifically about normal recovery, or that focuses on what to expect with surgery in general rather than individuals' experiences, I think that could be very helpful. The surgery story thread is very long, and it's hard to glean from it general things like expected recovery times, pain control options, or whatever and try to figure out if what you read in other people's experiences will be applicable to you. Maybe post a list of questions about surgery that can be replied to with concise answers?
 
Top