Bad week

[Sophabulous]

Hello all,

I was looking for advice on how you deal with pain. I've been getting quite nasty lower abdominal colicky pain for about a week now, and I'm not sure what to do about it. I'm taking pain relief and using heat pads but is there anything else that could help like buscopan? Are we allowed to use this, I've seen conflicting advice :-/

I'm usually one to get a bit of cramping that is usually just wind or something so this is new to me.

Off for a hot bath, to see if that helps!


TIA

Soph x

 

[ronroush7]

I have been told that Tylenol is the only thing similar to aspirin that i could use for pain. If i use aspirin, advil or bufferin it can cause bleeding. I hope you can get some relief soon.

 

[eleanor_rigby]

Hey Soph, I think you should leave a message with your GI team.
What is the pain like? Is it like waves of pain? I don't want you to have an obstruction...

 

[Sophabulous]

Hey Soph, I think you should leave a message with your GI team.

What is the pain like? Is it like waves of pain? I don't want you to have an obstruction...

Thank you both, I've always been confused about what pain relief we can have. I've been told no NSAIDS so I don't take ibuprofen, aspirin or anything like that. I can have paracetamol and codeine but that causes constipation which makes things worse :-(

I did wonder about that, I'm supposed to have had a follow up appointment by now but I still haven't heard anything so I'm changing hospitals and going to Countess of Chester next month. I don't know if contacting my original hospital now would confuse things :-/

In all fairness I'm not experiencing an increase in symptoms, just this pain. It's been in the mornings mostly, it feels like really strong contractions if that makes sense? Like someone has my gut in their hands and is twisting it around. Usually if I have any pain it gets better once I've been to the loo but this isn't. Last night it went on well into the evening and actually woke me up this morning which has never happened so it does seem to be getting worse.

I posted the other day about varying my diet as I eat so unhealthily, so I've started small with adding a bit of fruit and juices etc. I think that's what has triggered it which is maddening as I only want to make sure I'm getting nutrients. All I seem to eat is bread, potatoes, sandwiches and frozen meat/fish etc which are fine but not exactly the best in terms of variety and balance. I'm very cross with myself and my body right now. It's so ungrateful lol.

I've been back to bed this afternoon and I do feel much better now so I'll keep an eye on things. If it starts up again it gets worse I'll get in touch with the hospital. I assume that the IBD nurses won't be working with it being the weekend so would I have to call 111 for an out of hours GP appointment and go from there? I've never needed to do this before so I haven't got a clue!

Thanks again x

 

[Jabee]

I agree. If this is a new type of pain then it warrants a call to your GI and probably some testing. I have taken hycosamine and dicyclomine but neither one helped that much. If things get really bad I email my GP ask for some pain medication. Hope you feel better soon.

 

[Guerrero]

Could be the diet with more fruits than normal that triggered this pain yes. Do you know if you have strictures? It could be either some virus not related to crohns, have you had normal BM in the meantime??

I confirm i always heard no NDAIDS, but paracetamol is ok.

 

[Sophabulous]

Could be the diet with more fruits than normal that triggered this pain yes. Do you know if you have strictures? It could be either some virus not related to crohns, have you had normal BM in the meantime??



I confirm i always heard no NDAIDS, but paracetamol is ok.

That's an interesting question, they said I didn't when I was diagnosed last year but treatments have all failed and the inflammation isn't under control at all so maybe I've developed one? My consultant said she didn't think I needed another MRI just yet at my last appointment but who knows. I haven't got much faith anymore to be perfectly honest, hence asking to go somewhere else :-(

 

[Sophabulous]

Bm's have been fairly normal for me, but a bit loose today. I'm usually a bit constipated if anything.

I can only describe the pain as being like when you have food poisoning and you feel like you need to run to a toilet but I actually don't need to go, and it doesn't improve much afterwards anyway.

 

[Guerrero]

Not sure strictures could develop as quickly as one year so dont worry too much till they dont see it in a MRI or another endoscopy.

When you mention your inflammation is not under control, what do you mean? Your CRP or fecal calprotectin is high?

What treatment are you following now?

 

[Sophabulous]

Although I have been getting very very bloated recently too which is new [emoji848]

Oh God, I'm useless at realising these things are increasing until it gets really bad. I swear it's like my body and me speak completely different languages at times [emoji849]

 

[Sophabulous]

Not sure strictures could develop as quickly as one year so dont worry too much till they dont see it in a MRI or another endoscopy.



When you mention your inflammation is not under control, what do you mean? Your CRP or fecal calprotectin is high?



What treatment are you following now?

Sorry, I mean that I've done, 2 courses of steroids, 1 liquid diet and 9 months of azathioprine and the visible inflammation on last colonoscopy (March 2017) had gone down to moderate from severe compared to the first one in April 2016. That said this year's was maybe 3 weeks after I finished a prednisone taper from 30mg so I think that had helped somewhat.

My bloods and Calprotectin results are only ever slightly raised, but I believe that isn't necessarily unusual for small bowel disease.

Since then I've seen my consultant once who was somewhat reluctant to start a biologic, as it only 'grumbles' as she put it, and if we do that we've kind of run out of options. She requested blood to check how I metabolise azathioprine and another calprotectin, but I've heard nothing since. She wanted to see me in 2 months which would have been last week, but I've heard nothing. The waiting lists are very long so unless it's an emergency I'm kind of stuck [emoji51]

 

[Guerrero]

Yeah that make sense to assess if azathioprin works or not before considering switching to biologics.

Inflammatory markers such as crp and calprotectin would be good indcators as well as your clinical symptoms.

If you dont trust your doc, you could look for second opinion and make those tests in other laboratory.

You mentioned your disease in in your small bowel also so mri could give more information compare to colonscopy, not sure why your doc said its not needed, maybe cause the last one was less than a year ago? In this case that could makes sense.

Try to keep calm sophie,i know its hard, but being too worried could make things worse even if you are right to care about your health and do regular tests

 

[Sophabulous]

Yeah that make sense to assess if azathioprin works or not before considering switching to biologics.



Inflammatory markers such as crp and calprotectin would be good indcators as well as your clinical symptoms.



If you dont trust your doc, you could look for second opinion and make those tests in other laboratory.



You mentioned your disease in in your small bowel also so mri could give more information compare to colonscopy, not sure why your doc said its not needed, maybe cause the last one was less than a year ago? In this case that could makes sense.



Try to keep calm sophie,i know its hard, but being too worried could make things worse even if you are right to care about your health and do regular tests

Thank you, I've been ok for the rest of today so I'll see how I get on. My last MRI small bowel MRI was March last year, I'm not sure how often they're usually done but it has been over 12 months now.

I'll see how I go, hopefully today was the climax of all this. If not and it continues I'll contact the hospital I'm leaving to see what they think.

Thank you all again x

 

[Sophabulous]

Forgot to say, the only thing visible on colonoscopy is TI & caecum, the rest is duodenum so I'm a bit of an odd case lol.

 

[Jabee]

The pain you are describing is exactly like mine, and my inflammation is all in the small bowel (duodenum to ileum, various places at different times). If you have some active inflammation (which you do) food passing through could very well cause pain. For me it feels like early to mid labor pains. Sometimes I don't even want to move. I hope you can reach your GI soon.

 

[Sophabulous]

The pain you are describing is exactly like mine, and my inflammation is all in the small bowel (duodenum to ileum, various places at different times. If you have some active inflammation (which you do) food passing through could very well cause pain. For me it feels like early to mid labor pains. Sometimes I don't even want to move. I hope you can reach your GI soon.

Thank you, I've had an easy time of it with pain up until now so this must be what others put up with anyway and I've been lucky! I will mention it to them as it is new and persistent so probably warrants looking into just to be sure.

Thanks again

 

[Sophabulous]

Thank you all for your responses, it's been a rough weekend so I've left a (rather haggard sounding I must say) voicemail with the IBD nurses. Hopefully they will get back to me with some advice in the next couple of days.

Thanks again

 

[Cross-stitch gal]

Thank you all for your responses, it's been a rough weekend so I've left a (rather haggard sounding I must say) voicemail with the IBD nurses. Hopefully they will get back to me with some advice in the next couple of days.

Thanks again

I sure hope you'll get some help and some relief. I know what it's like to be in pain and wouldn't want to wish it on any of you...:hug:

 

[Sophabulous]

Thanks guys. One of the nurses rang me back and she had actually read my file, hallelujah!

She said my azathioprine was at the perfect therapeutic dose and can't be upped, and my calprotectin was raised although it slipped my mind to ask for the actual figure.

She acknowledged that I had just finished another course of steroids when I was last scoped which probably made things look better than they are. She heavily hinted that I'm going to have to go on a biologic, but said she will slot me in with my consultant on the next available urgent appointment to get the ball rolling.

I only called for advice but they seem to think I need to jump the queue so hopefully things will start looking up soon.

Thanks again for all your replies x

 

[Cross-stitch gal]

Good to hear that they're taking you seriously!!! Sometimes you've just got to take what you can get. And, if the call makes them do things quicker for you maybe that's what it takes!!!

 

[Sophabulous]

Good to hear that they're taking you seriously!!! Sometimes you've just got to take what you can get. And, if the call makes them do things quicker for you maybe that's what it takes!!!

Hopefully! Now I just have to worry about whether or not they get me an appointment before i have one at the new hospital. If they do and they agree to a biologic will the new hospital simply pick up from where I've left off and I can have the treatment there, or will they want to reassess me before deciding? This throws a spanner in the works somewhat! Hopefully the fact that nothing else has worked and calprotectin etc is still raised will be enough.

Never mind, I'll see what comes first and go from there

 

[ronroush7]

Hoping all the best for you.