Forum newbie...reaching out with my story!

[Mina_]

Hi everyone!

I've been reading posts in this forum on and off for a few years now which has been incredibly useful but I'm going through a particularly difficult period and have finally decided to join and reach out with my first post.

I'll start by introducing myself - my name is Mina, I'm English but living in Italy and have been battling Crohn's for 10 years (I was diagnosed at 21). I have tried all the medication available - pentasa, azathioprine, infliximab, humira which have kept me at an 'ok' state but I've never really been completely in remission. I had my first surgery, a subtotal ileocolectomy in 2012, after which I was doing well for a year or so but then the symptoms started to get progressively worse again.

I'm currently having a pretty bad flare up for which I was hospitalised for a week and I've been off work for nearly two months now. At the moment I'm on prednisolone and antibiotics to try and control the symptoms while we're waiting for a new biological drug to come out here. My gastroenterologist has made it clear that they're doing everything they can to avoid another surgery but that if I can't hang on until this new medication comes out, or if it doesn't work, then surgery would be the only option.

I'm struggling at the moment to deal with and accept my current state and while my friends and family have been amazing I feel it is time to connect with people who are going through similar things.

If anyone can spare any words of support it would be much appreciated, and likewise if I can help anyone with my own experiences it would be my pleasure!

Thanks!

 

[24601]

Hi Mina,

Sorry to hear about what you are going through and that you have had a long battle with Crohn's without remission. It's frustrating too when surgery doesn't give you much time to enjoy feeling well.

I have stricturing jejunileitis so I don't know how similar our diseases are but I just wanted to say hello and offer my support.

Is is vedolizumab that you are waiting for or something else? Whatever the new med is I hope you can get it soon.

Do you think it would be worth trying Exclusive Enteral Nutrition in addition to your current meds while you wait? Have you ever done that before? Also have you ever tried methotrexate? I couldn't tolerate Aza or 6mp but have had no issues with methotrexate and it seems to have helped a bit.

It's really hard waiting for the next treatment that you can try and I just wondered if there might be anything else in the meantime.

What kind of surgery are your doctors talking about?

I hope this forum helps you cope. I think it really makes a difference to have people who understand what you are going through :ghug:

 

[4peace]

Hugs to you Mina! This disease is so frustrating at times, especially when it seems as though remission will never happen.
You mentioned surgery and I wonder if having a resection has given you some of the symptoms that we assume go hand in hand with active flaring ( lots of D). I know for me, even when I think technically I am in remission, it never really feels like I am and I think that is due to my stricture and the fact that I had a right hemicolectomy and things just go through me faster because of that.

I can tell you that this forum is such an amazing place for support, and information from those who completely understand! I know sometimes there are more tough days than good, but I encourage you to "fake it til' you make it"! Sometimes just pretending like you're normal helps! Haha! At least it works for me sometimes. Keep your chin up and welcome to this forum/family! :ghug:

 

[Mina_]

Thanks 24601 and 4peace for your input and support. Just reading your messages and participating in other discussions has made me feel a bit better

Vedolizumab is the med I'm waiting for. I was initially told it would be out at the beginning of this year, now I've been told it's a matter of months. I've read a rumour on other forums that it will be available from May, but I guess I just have to be patient. In the meantime I'm on Modulen as well as the other meds but my doctors have never suggested exclusive enteral nutrition as I can tolerate some food and so am following a low fibre, low residue diet. It's a good job I like rice and chicken!

"Fake it til you make it" - I like it! I've been doing that for the past ten years but I do feel that sometimes you have to sit down and face reality and accept that you can't do everything that you want and have to make adjustments to deal with this illness. And this is where I'm struggling.

Yesterday was a bad day, but today is already a bit better and hopefully tomorrow will be a good day! So thank you!

 

[mamalana]

Welcome, Mina! I have to say that I love your name...it is the same name I gave my daughter 14 years ago! Keep your head up and I truly hope you find relief with the new medication (whenever it becomes available to you)!

 

[24601]

Hi Mina,

I'm glad things are a bit better. It sounds like you need the Modulen to supplement your limited diet but drinking Modulen exclusively (without normal food, or one study says just 10% of calories from normal food) has benefits for controlling disease activity. I know you are on prednisone and that normally you would choose between prednisone and EEN for getting disease activity under control but I thought that if prednisone isn't working as well as you need that perhaps adding EEN as well might have benefits for you until you can get vedolizumab. Also it might give you more nutrition than you can get from your limited diet to help your body to heal. Just an idea.

So sorry to hear that you are dealing with this uncertain wait. And I agree, it is really hard to accept the physical limitations that our bodies place on us at times. I know I struggle with that and have to try to remember that there are times when you need to put your energy into healing and just looking after your health and that you can no longer push yourself to do all the things you want to. But hopefully, in the not too distant future, you will be feeling healthier and be able to go back to living a more normal life.

 

[Mina_]

Thanks again everyone!

Today I found a similar forum for Italian Crohn's sufferers and it looks like Vedozilumab is not going to be available here until "October or November if we're lucky" :-( So thanks for the advice regarding EEN, this is something I will definitely discuss with my gastronenterologist next time I see her. I'm hopefully going to be back at work on Monday and I have an active job which is especially demanding over the summer so I'm concerned about keeping the disease under control with just the prednisone over the next few months.

Completely off the subject but 24601 - is that a Les Mis reference?!

 

[24601]

That's a shame that you have to wait so long but great news that you might be feeling up to going back to work soon. Wishing you lots of luck with keeping this disease under control.

And yes that is a Les Mis reference!

 

[Mina_]

:thumright: I love it! I'm actually watching the DVD of the 10th Anniversary concert at the Royal Albert Hall right now

 

[24601]

That's my favorite!!!