Hello - a blue newbie

[feace]

hello - a blue newbie

Hello all.

I'm so glad to have found a place to be able to talk.

I was (unofficially) diagnosed with Crohns in January after years of ongoing bowel issues. Even now on all my hospital papers they write 'Crohns (?)' I absolutely hate that little question mark.

Before I would live most days with pain, fatigue and urgency to get to the loo and had was hospitalised several times for excessive bleeding, vomiting and abdominal pain. Each time I would be discharge a week later with diagnosis such as acute Dysentery - despite living in a nice suburbs in England.

It was only after another bout of all the above last summer that I went to my GP and practically demanded a colonoscopy. Through this I got the diagnosis, unofficial though, because my intestine was to closed for them to get the camera very far.

I was given no info on the disease and had a doctor who wasn't particularly concerned and kept saying it was probably IBS or wheat intolerance.

He even once "joked" "I could give you arsenic pill and end it all"[/I] and then added that I was too fat to have crohns! (when I have a flare up it falls off me, but when stable I am a UK size 10).

Through all this it was another 6 months before I to started my steroid and anti-flam treatment.

Unfortunately for the first month of this treatment made me even MORE unwell and I couldn't get out of bed let alone work. I had to give up my work, my flat and my life as I knew it and move back home.

However, I finally turned the corner the last week of my steroids and despite putting on a lot of weight, felt almost normal again. All symptoms left except lack of energy which I felt I could live with. I started a new job, which I absolutely love.

However, a week after finishing my steroids (which was a month ago) the diarrhoea, urgency to get to the loo, bloat and now, worse, the awful pain have returned. I don't know what to do as my consultation is not for another 3 weeks.

I don't really like or trust my doctor but I also don't know who else can help. And I really, REALLY don't want to go back on to the steroids after feeling so unwell the first time. Especially now I have this new and wonderful job.

Sorry for the long rant and explanation but I really am beginning to feel the weight of this disease.

Feace x

 

[Fruitcake]

Hi, I'm new the site aswell but was diagnosed with Ulcerative Colitis about 10 years ago. It took ages for me to get a proper diagnosis, I was convinced the doctors didn't care or know what they are doing. It was as if they just kept increasing my steroids while they scratched their heads and didn't know what to do.

Have you tried calling your consultant's secretary and asking them to bring the appointment forward because you're ill again, tell them you've finished your course of meds but you're feeling rotten. I've done that a few times with my appointments.

You could ask your GP if they can refer you to a different doctor, nobody can stop you getting a second opinion. I'm not with the same consultant or even same hospital that I had surgery in and I'm still in the same town.

Good luck getting your symptoms under control.

Lyndsey xx

 

[Crohn's 35]

Hi Feace! Wecome to the forum! Sorry you are so confused. I would be too, and I have been there. First of all, the "joke about the arsenic pill" VERY bad thing to say to anyone.

I would get a second opininion, and asap. I did, and was the best thing. Crohns is very hard to diagnose, and I too dont fit the norm, I am over weight but losing even whilst on Prednisone. I am tapering to 15mg tomorrow and have suffered with gas pains last few days.

Howevery my intial dx I lost 40 lbs in one month I was so sick. Do you have any other meds? Waiting 3 weeks a going to be tough. The only thing you can do to help your self in the meantime is drink Ensure and puddings. Avoid chewy foods. Yeah it is hard but you will feel better. Glad you found us, let us know how you are doing ok?? Hugs!

 

[mussen]

Hi feace,and welcome
sorry to hear you are having a hard time.
As already sugested I think it would be a good idea to find another Dr, especially if you don't like or trust them.
I hope you get some answers soon, hang in there!!

M

 

[mikeyarmo]

Welcome to the forum Feace!

I am sorry to hear that you have had a lot of frustrating experiences so far. Your doctor does not sound like the brightest gem out there, so I do not know if it is possible to try to switch to someone you do trust or get along with.

I am glad you found a job you enjoy and hopefully that makes you less glum. Don`t give up yet or worry about the return of symptoms as there are other treatment options out there and even though steroids are not the best long-term solution they may be helpful again in the short-term.

 

[ameslouise]

Hi Feace and welcome!

Ditto above about getting 2nd opinion, or moving up your appt. Or as Joan/Astra would say - go to the ER and scream to get some relief!

I hope you can find a doctor you like (and not one that says such bizarre and inappropriate things - what a loser!) and a med plan that works for you.

Hang in there and keep us posted! - Amy

 

[Astra]

Ha Ha YES! Amy

Feace you can't put up with this, and living in the UK you have a right to go to A&E and scream for some help, and if you're really dehydrated, they can get you on IV saline and IV hydrocortisone too for the pain.
Also, as suggested by Lindsey, give the secretary a ring on Tuesday, and try to get your appt moved to earlier. Hope you get something sorted soon, glad you found us, we are here for you to support and advise.
Big welcome
Joan xxx

 

[merrywidow]

welcome feace, welcome abord.
have you done a food diary? many of us on here cant tolerate certain foods. i for one get bad if i eat any dairy products.

 

[My Butt Hurts]

Arrgh! That was SO ignorant, both of those statements that your doctor made. All Crohnie's aren't skinny.
That was your GP, have you seen a GI doc? You might have better luck with a specialist.
Don't apologize for your rant either - we're here to listen.
Welcome to the forum, glad you found us!
MBH

 

[Psilant]

Wow. I'm so sorry you are having trouble with both your gut and your doc. That was highly unprofessional of him/her to say that to you!!

Everyone has given great advise. I agree with a second opinion if you can find one. You need a doc that will actually listen to you. You know your own body better than anyone else.

Some have mentioned diets. Like merrywidow said, keep a diary. Start bland, slowly add other foods (like maybe one a week) to see which foods are more of an irritant and which ones you can tolerate better.

I'm still new to this and still learning everyday. Good luck to you and I'll keep you in my prayers.

 

[feace]

Hello everyone.

Thanks so much for the advice and support, it really helped in a time of feeling rubbish.

I am currently in the process of both stating an exclusion diet and getting a new doc. Found out there is a specialist clinic for IBD a few towns over so looking to get refereed there.

Hopefully things will start to get better!

Fearce x

 

[Jennjenn]

Welcome

Like everyone else has mentioned, I would get another opinion. I hope things do start to go well for you when you get referred to the specialist.