Any advice for crippling spasms?

[Margaret234]

Hello. I'm a seventeen year old girl diagnosed with Crohn's a month ago; I've had IBS since I was 3 and had to be given suppositories for constipation. Last year I was in hospital for spasms and they diagnosed me with mesenteric adenitis, it's only recently that they did an endoscopy and colonoscopy and found patchy inflammation in my large intestine and they only managed to take a peek inside my small intestine and found it severely inflammed.


I was given an 'emergency' course of 8 steriods for a week, however the spasms have become more intense and more frequent, so much so I was in A&E and had to be kept overnight with a fluid drip. Now I have been allowed out and yet the spasms have not gotten any better. During the night any little movement will throw me into one, my stomach feels bloated and often hard, as though there is a rock bulge somewhere inside. I have a lot of painful flatulance and sweating as well during the night. Then during the day any time I eat I have agonising spasms, they last for 10/15 minutes and are often immediately after or during eating.

The doctor (gastroenterologist) at A&E has booked me in for an MRI as she believes I may have strictures (scar tissue in intestines that narrows the intestinal wall) and this is the reason the steriods are not and have not worked. I also have an appointment on the 10th June to see my consultant. But the spasms are not subsiding and sometimes I actually want to die with the pain, or at least give up. I need help. I have an IBD helpline but there is little they can do. Apart from going into hospital, which my family are reluctant, I essentially have to wait. I'm just not sure how much longer I can go on like this. Any help would be so appreciated.

 

[24601]

I have definitely had severe spasms with strictures as the bowel tries to push bowel contents through the severely narrowed sections. It's good that you have an MRI scheduled but how long do you have to wait for that?

Without knowing if you have strictures I would be reluctant to suggest any medication but some dietary changes (anything from reducing fibre to pureeing foods through to predominantly liquids) or a course of exclusive enteral nutrition may help the cramping or pain significantly if it is caused by strictures.

If you are in severe pain, unable to keep hydrated, have a high temperature, or your abdomen becomes rigid then I would go to A&E.

Otherwise, if you are unable to eat or already doing mainly liquids, I would ask your doctor for a prescription for complete nutrition drinks, like Fortisip, to see if this makes the pain and cramping more bearable until you can get more answers from the MRI.

 

[Mr chicken]

Second the enternal nutrition
Maybe the Ibd nurse line could get ahold of your GI to call it into the pharmacy for you
I believe its has to have doctors orders in the UK ...?
Not sure if you will find boost/ensure type drinks over the counter ...

 

[24601]

Much much cheaper to get a prescription in the UK though you can buy any of the complete nutrition drinks without a prescription. Any non-IBD specific formula can be prescribed by a GP. Modulen and Elemental 028 Extra would require a prescription request from a GI (though of course aren't necessary for most).

A GP will often be prepared to prescribe a drink like Fortisip (my personal favourite on taste!) as a supportive therapy if you are unable to consume enough calories. For larger quantities or if required on a regular basis for periods of EEN then you would probably need a request from your GI as this would be considered a treatment for Crohn's (rather than a supportive therapy) which should usually be led by your GI, rather than GP, although there are exceptions.

Definitely worth asking your GP for a prescription if that would be faster than contacting your GI. And in the meantime, sticking to soups, popsicles, ice cream, milkshakes and smoothies can help.

When I had severe strictures, enteral nutrition helped the pain and cramping but did not get rid of those symptoms completely - still worth doing for some relief though. I just wanted to warn that if you do continue to experience pain on a liquid diet it doesn't mean strictures aren't causing the pain. It's very important to be able to get adequate nutrition too and enteral nutrition can really help with that.

 

[Muppetgirl]

Hi Margaret. I'm sorry to hear of the situation you are in. I can thing of a few 'little' things that may help the pain, though I am mindful that you are dealing with a significant unknown at the moment in terms of the extent of disease in your small bowel.

It is good that you have the appointment on the 10th. I recommend asking the consultant about oral/sip feeds. Good GP's can prescribe, but it is a mindfield and they may want a dietician involved, so that you are not accidentally prescribed a feed or supplements inappropriate to your individual case. Mashed pototoes are another soft food usually tolerated.

Have you tried heat? I know it's basic but heat pads really help some folk. Also what do you have for pain? You probably know anti-inflammatories should be avoided. If you take paracetamol, it needs to be taken round the clock to be most effective. This is what they mean by 'staying on top of the pain'. You could ask your consultant if you can take anything else for the pain but they will be balancing this with the constipating effect opiates can have. Peppermint can be very good for gas pain. You can buy peppermint oil or tea or even mints, but have a small amount to begin with until you know how you tolerate it.

I know being in hospital is rubbish but please do return if you feel really unwell, esp sickness or fever. It sounds like you're in good hands. I hope things improve soon.