First flare up

[jsy106]

Hi everyone!

I've just registered with the forum and wanted to say hi and tell you about myself.

Up until recently I didn't have Crohns as you would normally expect. I had unsightly lumps which was very distressing for a girl in her 20s. To cut a long frustrating story short I was diagnosed with Crohns by chance and following a colonoscopy during which biopsies were taken to confirm my dr's suspicions. He put me on Azothiropine (apologies if the spelling is incorrect) and then Methotrexate but I came off that over 6 months ago.

I've been very lucky not to suffer any flare ups until recently. Not knowing what to expect was the worst and feeling so helpless was horrible. I'm sure you've all experienced similar.

The start of my flare up was over two months ago and I am still suffering, mainly from the lack of energy, even after cutting out wheat, dairy and refined sugar.

I'm finding this all quite depressing and feel like I'm the only one in the world feeling like this (I know I'm not but I'm sure you catch my drift!)

So that's me so far! Please feel free to dispense your advice to me!

Thanx for listening :ysmile:

 

[SugarberryGA]

Hi! I understand completely what you're saying! I was diagnosed nearly 30 years ago and had my first flare in August of this year. I was hospitalized for three days and am still not feeling well. I suffer from a lack of energy as well and have been having horrible heartburn since August. Because I've always had a mild form of Crohn's and have really never had any problems with it, I don't know how I'm supposed to feel, when to worry, what to look for..... nothing!! I'll be interested to see what kind of feedback you get.

Hope you feel better soon!!:sheep:

 

[David]

Greetings and welcome

Unsightly bumps? Can you elaborate on that?

And do you know where your Crohn's is located in your intestines? Ileum? Terminal ileum? Colon? Or somewhere else?

Are you taking any supplements?

*hugs* to you!

 

[Del]

Hello and welcome to you here on this forum..
I have nothing to dispense to you as i am recently diagnosed myself.
But you have found a great forum to come too, to help you through this flare up you are experiencing.
And you are quite right ....you are not alone....this place is full of lots of people of all ages at different stages along the path of this disease... Lots of good information here and friends who are like minded..
Take care...

 

[jsy106]

Thank you to everyone who posted.

Means a lot to speak to people going through the same thing. I have a wonderful supportive family but it's not the same as talking to others in the same situation so thank you again!

In answer to your queries David, and without causing myself too much embarassment, I had boil like lumps around my private area :blush: but no other symptoms which puzzled all the consultants I went to see.

The lumps got so bad I had to have a major operation and reconstructive surgery which too months to get over. However my doctor sent the tissue he removed for analysis and it came back that I had Crohns.

I then went to see a consultant and he told me there was nothing he could do as I don't have Crohn's like all his other patients and no medicine/steriods would be effective. But the lumps still keep coming back and I keep having to have them removed by laser which, and trust me on this (!) is no walk in the park!!!

But recently I have been presenting "common" Crohn's symptoms and my consultant believes I have just experienced my first flare up a couple of months ago.

But...... my consultant told me, after carrying out a colonoscopy a couple of weeks ago, that Crohn's wasn't present in the bowel. Does that mean I am not having a flare up or that I am and it just isn't present in the bowel!!??

I have so much to learn! Hope one of you guys can help!! x

 

[stickman7755]

Hello,
I was diagnosed a month ago and have had a flare up since. They put me on predisone (steroids) which has really helped with my appetite and energy levels, I can eat more than I have ever been able to.

why doesn't your doctor think steroids will help?

I have tolerated dairy quite well. I eat a lot of fish, lean steak, chicken, pork for protein. Also I drink protein/carb shakes.

It has been a really long month but everyday I feel better about having CD and this forum helps A LOT!! I was surprised as to how many people on this forum have gone through things so similar to what I have gone through!!!

I hope you start to feel better!

 

[SugarberryGA]

This forum does help a lot and it helps knowing you're not alone.

 

[Nerple]

The start of my flare up was over two months ago and I am still suffering, mainly from the lack of energy, even after cutting out wheat, dairy and refined sugar.

After my last flare-up, I managed to lose 10 pounds in about 5 days and was absolutely void of energy (complicated by having Klippel-Trenaunay as well) and found getting back to the gym immediately to be a huge help. It was difficult at first (especially once I realized I couldn't lift nearly as much and that 10 pounds was probably all muscle) but it helped alot to rebuild my energy.

 

[jsy106]

why doesn't your doctor think steroids will help?

Basically my doctor believed at the time that the risks far out weighed the benefits so decided to take me off them. But I'm on Entocort at the moment because of my flare up.

 

[brooklyn23]

The lack of energy sucks! I'm so tired all the time right now. I can't even get up to do yoga. I just want to nap all the time. (I also have a mood disorder, which I'm being medicated for now, but back when I actually got diagnosed with Crohn's it was really bad.)

 

[David]

I then went to see a consultant and he told me there was nothing he could do as I don't have Crohn's like all his other patients and no medicine/steriods would be effective.

I would strongly suggest getting a second opinion from another GI.

I would also strongly suggest having your iron, B12, Folate, and any other vitamin and mineral levels checked that you can as deficiencies in those may be causing your fatigue.

Good luck and keep us updated!

 

[jballer123]

i totally understand how u feel, flares ruin my work and social life at times, just know that it will get better