Does anyone have any suggestions to help me?

[eloise]

hello,
I was diagnosed with Crohn's in July 2016. I spent practically the whole summer in hospital so it was obviously a hard time for me.
I am in my second year of A levels atm and have just turned 18, hoping to go to university in September.
I do not know anyone with Crohn's and often feel quite alone.
My treatment started with various steroids but then didn't get any better so I am now on Remicade, having an infusion every 8 weeks.
Although the majority of my days are good days, I do have the occasional day, week or month where I feel horrible.
Therefore I would love some advice from anyone else who has this horrible illness.
My questions are:
1. Does anyone else feel like the heat makes their symptoms worse? It has got hotter in the UK and I have felt a lot worse since it has.
2. Does anyone have any suggestions of over the counter medicine I can take to help abdominal pain? Currently I take Buscopan and paracetamol when feeling unwell but not sure if theres anything else out there?
3. I suffer from sickness quite a lot, sometimes feeling sick, sometimes actually being sick. Does anyone have any advice of what they do when feeling nauseous?

Thank you!

 

[Sophabulous]

Hello!

I'm suffering in this heat too! As lovely as it is, it's killing me. I've resorted to staying in with fans and the curtains drawn which is helping. Try a wet flannel under your arm too, this should lower your temperature. Also, I'm using it as an excuse to stockpile ice lollies!

Pain wise my GP said no NSAIDS so no aspirin, voltorol, ibuprofen etc. Codeine is ok but only on prescription. You can get paracetamol and codeine over the counter so I often use that.

Thirdly, my GP gave me cyclizine which certainly helps with the sickness. Occasionally I haven't taken it in time and brought it back up, but if you take it as soon as the nausea appears it does the trick.

Hope that helps!

 

[eloise]

thank you so much! I'm currently in my room with the blind drawn and fan on but will try the flannel idea!
Unfortunately I react badly to codeine so am unable to use that
I will go to the doctors and see if I can be prescribed something.
Thank you again!

 

[scottsma]

I put wet,wrung out, dish towels in the freezer then wrap them round my neck.When it begins to warm up,I exchange it for another one.
I just wanted to mention that we have a "young adults " thread you might find helpful.
Not that you're not welcome on any other threads of course.

 

[eloise]

Thank you!
New to all this forum stuff!

 

[Sophabulous]

Unfortunately I react badly to codeine so am unable to use that

That's rubbish, sorry! I always find heating pads/hot water bottles help my abdominal pain but that would just be torture right now! It feels so much worse now it's night time here, really clammy and close heat. My phone says it's still 20 degrees at gone 11pm. I'm debating whether to have a cold shower!

 

[Jabee]

I take both promethazine and metaclopromide for nausea. Sometimes it is so bad I have to alternate both throughout the day. My GI also recommends peppermint for nausea. It can get pretty hot where I live in Massachusetts but we have air conditioning we can use when it's bad. I hope it cools down for you guys. During the three years I lived in the UK it didn't get too warm, but it was over 20 years ago so global warming wasn't as bad as it is now.

 

[Sophabulous]

During the three years I lived in the UK it didn't get too warm, but it was over 20 years ago so global warming wasn't as bad as it is now.

I remember when I was a kid we had proper winters and summers here. Recently it's warm and very wet winters, and warm and mostly wet summers! Winters used to be -10 degrees c and summers late teens or early twenties pretty consistently. The last few winters it's barely frozen over, but constantly been wet.

The summer I did my GCSE's in 2007 it was warm and humid but with torrential rain and thunderstorms almost daily. It just never let up. The last few years we've been lucky to get a handful of hot days in the summer and the rest is just typical British weather.

Maybe I'm idealising my childhood but things seem vastly different now. A real summer back then was warm and dry from June through to September. Now it's just pot luck!

 

[ronroush7]

Sometimes, I wonder if the heat makes it worse

 

[cmack]

Hi Eloise,

I think heat and also humidity make me feel worse too. Make sure to stay hydrated, sometimes sipping on cold gatorade helps me. I like the orange kind.

Best of luck to you,

Chris

 

[Mountaingem]

Oh yes heat is horrible for me. My joints swell, I dry heave, develop rashes and I usually end up being dehydrated and in the hospital.

I livein CA. My GI says air conditioning is very important for all patients with autoimmune disease, but especially those on TNF inhibitors like Remicade, 6MP, azathioprine and methotrexate. He has had patients move to cooler climates and improve.

He recommends that for every bottle of water you drink, drink an equal amount of Propel or Gatorade. Stay indoors and in air conditioning as much as possible and wear sunblock because Remicade can cause lupus type side effects from sun exposure.

Good luck on your studies!