Hi everyone I've been ill since November, but only just got diagnosed with crohns in my small bowel this week. The pain and vomiting is occurring more frequently lately and can make me immobile and unable to look after my own children. I've been to A and E several times and I'm just given more pain killers that I've already got at home and seem to only work some of the time. I really need help with managing so that I can be a proper mum again it's starting to make me feel depressed I haven't had a normal life since last year!! The pains I get are worse than labour pains and it didn't used to be this bad, there must be something causing it to have changed so severely. The last time it happened was Thursday night and I went to bed at 8 pm I've only just started feeling better about an hour ago. Is this a normal part of crohns disease? Any insight would be much appreciated xxx
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Help!! I need advice on controlling the pain.
- Thread starter ♥kezm
- Start date
Hi kezm, unfortunately Crohn's can cause a lot of pain, but there are also a lot of things that can be done about it. It may take a bit of trial and error, but your doctors should be trying to help you get it under control. Are you taking any medications for your Crohn's? (Besides painkillers - painkillers can block the symptom of pain, but they don't tackle the inflammation or other causes of it.) As you're only just diagnosed, it may well be that any treatments you've started on have not had time to work yet. If you're not on treatment, or it's not working, discuss it with your doctors as soon as you can.
While you're getting treatment sorted, painkillers can help you in the mean time. Which painkillers have you tried?
If you're pain is very severe, go back to A&E, even if they've not helped much before, they will at least make sure nothing imediately serious is going on. If you have a fever, you're vomitting a lot, you are passing blood, have severe diarrhoea, or are unable to have a bowel movement - these are all signs that you may need medical help quickly.
You're so recently diagnosed, there's no reason to think it will always be this bad for you. It take a while to find the best treatment, the best doctors, the best diet to help you feel better. Make appointments with your gatroenterologist, or even just with your GP if the waiting list for your gastro. is long, and tell them you're worried about how bad it's getting. They're there to help you.
While you're getting treatment sorted, painkillers can help you in the mean time. Which painkillers have you tried?
If you're pain is very severe, go back to A&E, even if they've not helped much before, they will at least make sure nothing imediately serious is going on. If you have a fever, you're vomitting a lot, you are passing blood, have severe diarrhoea, or are unable to have a bowel movement - these are all signs that you may need medical help quickly.
You're so recently diagnosed, there's no reason to think it will always be this bad for you. It take a while to find the best treatment, the best doctors, the best diet to help you feel better. Make appointments with your gatroenterologist, or even just with your GP if the waiting list for your gastro. is long, and tell them you're worried about how bad it's getting. They're there to help you.
What tests have you had done? And what were the actual clincal findings if you know them. Crohns pain is an interesting thing and dealing with it is different not only for everyone, but also for where its radiating from. upper/mid/lower small or the large? Imaging should help determine where the pain is coming from.
Thanks for both ur replies. I'm currently on Co Codamol, buscopan and have just finished my third round of prednisalone steroids. I've had numerous blood tests all with high crp levels. I've had a colonoscopy and endoscopy both of which came back clear. I've had a c.t scan the results of which led to me being diagnosed with the crohns in the small bowel.
There are many stronger painkillers you could try. Do you find the Co-Codamol helps at all? If it helps a bit, you could ask your doctor for a much stronger codeine prescription (it's addictive though, so if you can it's best to only use it on the worst days). Have any of your symptoms improved since starting steroids? The prednisolone will be what your doctors are hoping will treat the inflammation itself rather than just easing symptoms. It tends to work quite quickly, so if you've seen no result, it might be worth checking with your doctor.
The Co Codamol work some days but when I'm having a bad flare they don't take the edge off the pain at all and the buscopan i find are useless. At first the prednisalone were working but during my third time on them i had two bad flare ups with vomiting, I couldn't even keep water down and my stomach was grumbling really loud then a contraction like pain was coming and going. That's the worst it's been. I seem to be having more bad days lately where the pain will make me not able to do anything apart from lie in bed. I'm seeing my gp on wednesday so I'll tell him all this and he's already trying to get me an emergency appointment with the g.i specialists.
- Location
- London, UK
Your description of the pain and the fact that you are vomiting makes it sound like you might have a stricture.
Have you tried going on to liquids only? This may provide some relief from the pain while you wait to see the GI. You could ask your GP to prescribe a complete nutrition drink like Fortisip or Ensure. These are also useful for nutritional supplementation if you're finding it difficult to consume enough calories.
It's good that you are seeing your GP quickly and that they are trying to get you an appointment to see your consultant soon. Hopefully they can put a plan of action in place quickly to investigate the exact cause of your symptoms and start a treatment that can help.
As UnXmas said, do go to A&E again if you have symptoms like fever, unbearable pain, vomiting and unable to keep fluids down or stay hydrated, absence of bowel sounds, rigid abdomen, or are unable to have a bowel movement.
Have you tried going on to liquids only? This may provide some relief from the pain while you wait to see the GI. You could ask your GP to prescribe a complete nutrition drink like Fortisip or Ensure. These are also useful for nutritional supplementation if you're finding it difficult to consume enough calories.
It's good that you are seeing your GP quickly and that they are trying to get you an appointment to see your consultant soon. Hopefully they can put a plan of action in place quickly to investigate the exact cause of your symptoms and start a treatment that can help.
As UnXmas said, do go to A&E again if you have symptoms like fever, unbearable pain, vomiting and unable to keep fluids down or stay hydrated, absence of bowel sounds, rigid abdomen, or are unable to have a bowel movement.
When I've been to A&E all they do is blood tests and feel my stomach then give me more painkillers, it's like they don't know how to deal with my condition. I'll mention the nutrition drinks to my doctor. I've heard of strictures but don't know what they are? How would they know at the hospital if I had one?
- Location
- London, UK
Strictures are narrowings of your bowel caused either by inflammation or scar tissue or a combination of the two.
Strictures can be seen on an MRI scan, a CT scan or barium follow through. If the stricture is causing the bowel upstream of the narrowing to be very dilated then it can show on a plain x-ray which is often the first type of imaging they will do in A&E if they suspect an obstruction.
You may have symptoms from a stricture that would be relieved by a liquid diet and this could help while you wait for further testing to determine the exact cause of your symptoms and how best to proceed with treatment.
Strictures can be seen on an MRI scan, a CT scan or barium follow through. If the stricture is causing the bowel upstream of the narrowing to be very dilated then it can show on a plain x-ray which is often the first type of imaging they will do in A&E if they suspect an obstruction.
You may have symptoms from a stricture that would be relieved by a liquid diet and this could help while you wait for further testing to determine the exact cause of your symptoms and how best to proceed with treatment.
Thank u, next time i end up having to go to A&E I'll at least know what I'm talking about!! I think that's why I'm getting fobbed off, but I know that when this pain is happening it's different than the pain I usually get. Do strictures require surgery? I've heard of re sections and stomas but don't know what they are either. My mum had crohns but she passed away when I was eight due to a pulmonary embolism, I remember the pain of her crohns and she was in and out of hospital but I don't know what for. She once had staples in her stomach following an operation but with only being very young I didn't really ask that much questions. I never thought I'd get the same disease.
- Location
- London, UK
If a stricture is caused by scar tissue then there is no way to treat and remove the scar tissue other than by surgery. But it would only require surgery if the stricture is causing unmanageable symptoms or narrow enough to risk perforation. The question of when to have surgery with fibrotic strictures (narrowings caused by scar tissues) often comes down to quality of life issues - but these can become very severe, for example, the inability to consume enough calories even with a liquid diet or debilitating pain. It can be best not to wait until the symptoms you are experiencing get that severe but it's a question of balance - some people live for years managing less severe obstructive symptoms and prefer to delay surgery.
If the stricture has an inflammatory component then any treatment that reduces inflammation can widen the narrowing and reduce symptoms and the risk of perforation.
So if you do turn out to have a stricture this is often the course that your doctor will take - trying medication to see if the stricture widens or even disappears.
When surgery is performed for a stricture they either do a strictureplasty, where they cut along the length of the bowel and widen that section without removing it, or a resection where they cut out the narrowed section and then rejoin the ends of the bowel - or if they can't rejoin because of the condition of the bowel or they think it would be beneficial then they bring the end of the bowel out to form a stoma, which is often a temporary measure until your bowel is healthy enough to reconnect.
I'm so sorry to hear about your mum. It must be really difficult having those memories and now having the same illness :ghug:
If the stricture has an inflammatory component then any treatment that reduces inflammation can widen the narrowing and reduce symptoms and the risk of perforation.
So if you do turn out to have a stricture this is often the course that your doctor will take - trying medication to see if the stricture widens or even disappears.
When surgery is performed for a stricture they either do a strictureplasty, where they cut along the length of the bowel and widen that section without removing it, or a resection where they cut out the narrowed section and then rejoin the ends of the bowel - or if they can't rejoin because of the condition of the bowel or they think it would be beneficial then they bring the end of the bowel out to form a stoma, which is often a temporary measure until your bowel is healthy enough to reconnect.
I'm so sorry to hear about your mum. It must be really difficult having those memories and now having the same illness :ghug:
What does the "impression" on your last ct say? Strictureplasty is a surgery for fixing strictures. It has a very good success rate, but it depends on the location.
Theres usually an order of operation that needs to be followed for treatment, especially in the usa, due to the way insurances are. So patience, which can be hard to come by, is needed. I personally have never went the pain medicine route. Mainly because when i was 7-9 they tried the whole opium tincture thing on me. Grew up disliking pain meds.
Theres usually an order of operation that needs to be followed for treatment, especially in the usa, due to the way insurances are. So patience, which can be hard to come by, is needed. I personally have never went the pain medicine route. Mainly because when i was 7-9 they tried the whole opium tincture thing on me. Grew up disliking pain meds.