Crohn’s Help!

LydiaRED1996

Hiya I’ve recently spend a month in hospital with sickness and diarrhoea, I’ve lost 15kg in that time, I’m still loosing weight and am struggling with eating and drinking due to the nausea and lack of appetite. 

I felt at my local hospital completely gaslighted, they kept on saying nothing was wrong with me and that it was in my head that’s why I was discharged. They even tried to get me committed to a Pysch ward.. 

My GP called me in for an urgent review, my blood pressure is so low, blood sugar low and also my heart is beating way to fast (144). I explained what the doctors have said to me and she’s was shocked, in my admission I had two scans an MRI and CT both of this tests indicated Crohn’s… I had an capsule endoscopy which was normal. They didn’t take biopsies or a colonoscopy, do you think I should ask for another opinion? 

I fully understand that the capsule didn’t show anything, it was done three weeks after the scans and not sure if that makes a difference. My gut is telling me something is wrong and I don’t understand how two scans can be completely dismissed… I have severe physical health conditions and immunocompromised, that along with the increased risk of Colon cancer it just doesn’t feel right…

Tori_Scope

Hi @LydiaRED1996  

I'm sorry to hear that you've been feeling so unwell! And I'm also sorry to hear that you didn't feel properly listened to by your local hospital.

I'm not a medical professional, so I'm not able to tell you what tests or treatments you might need. 

It seems as though your GP has taken you more seriously- is that right? If so, did they suggest any next steps to you after the urgent review? 

LydiaRED1996

Yes so they have done an emergency referral (need to be seen within two weeks). Unfortunately I’m out of the catchment area and automatically have to go to Kingston (local hospital) who completely gaslighted me. 

The GP has requested they forward me onto St Thomas’s, it’s crazy all my specialist are at Guy’s & St Thomas’s but that doesn’t matter. They also have asked my Urologist if they can do it “in house”, I just want reassurance really that it isn’t in my head. I know it sounds crazy but I feel as soon as they see you have a MH diagnosis they just jump to conclusions. 

My Thearpist was appalled they didn’t even contact her..

Tori_Scope

The emergency referral sounds promising @LydiaRED1996. I hope that you're able to be forwarded on to the other hospital.

If you do end up having to go to your local hospital instead, would you find it helpful to ask for a different doctor/nurse than you had last time? 

I just want reassurance really that it isn’t in my head. I know it sounds crazy but I feel as soon as they see you have a MH diagnosis they just jump to conclusions. 

You don't sound 'crazy' at all. We've had people talk about this on the community quite a few times before, and I'm aware it's something that does happen unfortunately  

Are you finding therapy helpful?

LydiaRED1996

@Teddybear12, I’m sorry to hear that sounds like an absolute ordeal. Thank you for sharing, so I have a 4cm sliding Hiatus Hernia but wasn’t given any treatment the more and more I research the more negligent my local hospital appears to be..

Binky1234

Stay strong as you know Crohns can affect anywhere in the GI tract.

 It can happen in any part of the gastrointestinal tract from mouth to anus.

Try and stay strong till diagnosed but until then you could ask your GP to prescribe you some meds they won't be able to give you Crohns meds but I think they may be able to give you anti sickness meds to help with the sickness, maybe some pain relief, something for the diarrhoea, something to replace loss fluids 

For my Crohns I get:
Stemetil for sickness
Co codamol  30/500 for pain
Omeprazole  20mg twice daily
Imodium for diarrhoea
Dioralyte to replace loss fluids
Prednisone
Sulfasalazine

If you have crohns everyone is different some/most have  diarrhoea then you get the  cases like me who have had bowel resection operations and suffer from sickness along with diarrhoea my joints are also affected.

Maybe join or phone the 
https://crohnsandcolitis.org.uk/ they will be able to give you some good advice, I joined them at the start of my illness before Internet lol  and found them helpful but in 1986 hardly anyone had heard of Crohns sadly, medically we have came on leaps and bounds since then and a lot more is now understood about this horrible illness.

It can take time for a diagnosis 1st I was told I was Anorexia, then I had nervous disability, then I was told that I was mentally unstable and was making myself sick.

 When I turned 16 I changed my GP behind my parents back, bold move at the time but it worked  (I was finally believed) after blood tests I was finally  admitted to hospital and put in a side room due to being so young and I was monitored and had numerous tests before I was diagnosed with Crohns.  

Basically what I'm saying is try and stay strong until diagnosed and  in the mean time ask your GP for help with the pain, diarrhoea, loss of fluids, sickness etc

You can also help yourself by buying a good barrier cream and using wipes example andrex sensitive as this area can get really painful due to chronic diarrhoea.

Stay strong hopefully you will get a diagnosis soon.

 Keep pushing for answers you know your body better than anyone, this may sound disgusting but take photos of your poo and take photos of your sickness so you can show your GP.

Keep a diary of how many times a day your sick and when you need to go, I've done this in the past, remember your GP has seen all this before. It would also be a good idea to show the hospital specialist when you see them.

If you pass mucus with blood also photo that as that also could be inflammation of the bowel also.

Good luck and stay strong @LydiaRED1996