Crohn's Disease Forum » Your Story » Infliximab Is Winning & I Think All My Fight Has Gone.


05-22-2017, 03:22 AM   #1
I_Love_Dasha
 
Join Date: May 2017
Location: Sydney, New South Wales, Australia
Infliximab Is Winning & I Think All My Fight Has Gone.

Hi Guys,

This Is My First Post.
I don't have crohns but my partner, Dasha, of 10 years does, She has had it longer than our relationship but only got diagnosed about 7/8 years ago.

A brief (very brief) history is this, We used to live in Prague where she was diagnosed, We lived there for about 5 years and for the last 2 years she was fine and was actually told by her doctor that she could come off the drugs.

We used to eat only fresh foods and had a pretty normal life, Normal as in we would go to work, socialise etc etc.

We then decided to move back to Australia, This is where we met. Dasha started studying for her masters in Finance & Accounting, She also managed to get her dream job in a consultancy Firm we both used to work for.

Now with the stress of moving, leaving her family behind, Studying for her masters, working and proving her worth at work she finally succumbed to crohns again.

she started to see a professor for her crohns who was THE main guy in Sydney apparently with regards to Crohns.

Well poppycock I say, she started the self injection (name leaves me now) and she had terrible reaction to it, Lost so much weight and looked like skeleton. came up with so many sores and ache's.

Obviously she was having mood swings and denying that she was not doing so well.

She tried to speak with her Dr but he was unavailable for a couple of days, anyway one night he called at a crazy hour like 8/9pm, She explained what was happening and he denied it was the drug and said well it looks like we will have to cut out some of your guts (my own words but meant exactly that, she needed to have an operation)

This was the very first type of drug she had used and we thought it disgusting that he didn't mention any other types of drugs to use, until WE suggested it.

Then he said Oh errr yeah we could try that !!!! WTF (sorry but I'm angry just thinking of it)

He told Dasha to see him in a week or 2's time. So what about the mean time ?

I took Dasha to hospital late one night because she was in so much pain and couldn't walk.

Well we was there for hours with no assistance, Then when we was finally seen we was told that her Dr (the professor) was in the hospital, He Didn't bother to come see her and told the nurses that Dasha can go home and sleep it off ? ? ?

Sleep what off ? The lack of weight, the excruciating pain or the fact that she couldn't walk ?

Anyway we had to leave the hospital so we did, it was only 24 hours later that I took her back to the hospital. The so called professor was there again and Dasha told the nurses in no uncertain terms that she did NOT want him to know she was there or to see him.

Anyway Dasha gave the so called professor the elbow and got another doctor at a private hospital, this guy seemed better (still seems ok after a couple years but never really knows Dasha's case)

Anyway within this couple years she has been in hospital a couple of times, Her own fault for not looking after herself too well BUT also because of the huge amount of stress she was under from work, studies and life with crohns.

As you all can imagine who have crohns, this is only a very small amount of Dasha's history with this terrible pain in the arse disease (pun intended)

Well now to the reason of this post....
Dasha has been on Infliximab for about 1.5/2 years, I noticed her becoming more depressed, crying everyday, and now for the last 6 months or so her anger getting worse.

She refuses to admit it is infliximab because now she is finally leading a "normal" life, don't get me wrong she still has relapses but generally symptoms are better.

I can understand that she is scared of the disease and the effects it has on her day to day life but with all that she has been through before and she never once got angry or aggressive or impatient as she is now.

We have nearly separated 3 times with Dasha saying she is moving out (not me leaving her) and I have talked her into staying.
But now it is me who is about to leave, I just can't take her mood swings, Anger. she even denies that she starts the arguments and to me it's her just causing arguments for no reason what so ever.

I researched Crohns for many years and found that Kefir milk and fermented foods really do help (although she isn't taking them as much as she should now)

The main reason for this post is not to ask your opinions on weather infliximab is causing her anger etc,
I know this to be true. What I would like to know is this,
from all the other fighters out there that have had this side effect with infliximab, What are you guys doing now, what have you done to combat this terrible side effect, How can I get Dasha to see that Infliximab is causing her to act this way, I'm aware that this would be more of a personal thing rather than a drug related thing but I'm at my wits end.

If she doesn't try and find another way of combating crohns I will be leaving because I just can't live like this any more.

My nephew has crohns and he was so close to committing suicide because of how infliximab was making him feel, He is usually the most softest guy ever Honestly I know people always say this but he truly is and he also started to be angry towards his wife who was pregnant and a whole bunch of other outbursts,

Dasha is someone who never talks about her problems and I'm just scared that she will commit suicide.

So.... Sorry for this long first post but to sum it up (I promise to be quick)

How can I get Dasha to admit, realise that Infliximab is turning her into the devil.

And what have the other guys on here that have a similar story done about their situation.

Her condition is good (knock on wood) but her anger,temper,emotions are way off the scale.

Sorry again for long post but thank you ever so much for taking the time to read this.

Please don't give me your opinions why it couldn't be infliximab, I know it is.
She isn't on her steroids any more either.
Oh and she has also come out in rashes, Under her armpits and on her groin area,

Oh and she suffered a bad case of Shingles which she caught on a plane back to Oz from her Nan's funeral....

She really has gone through some wars with this, But this last few months have been really over the top.

Please help Dasha and then please help me to save our relationship.

Thanks Guys x

Jez
05-22-2017, 06:26 AM   #2
ronroush7
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Hi. I am sorry for what you two have been through. Maybe you need to go with her on her next visit to the gi and explain what is going on. Maybe he can put her on another biologic that won't have this side effect.
05-22-2017, 06:48 AM   #3
I_Love_Dasha
 
Join Date: May 2017
Location: Sydney, New South Wales, Australia
Hi. I am sorry for what you two have been through. Maybe you need to go with her on her next visit to the gi and explain what is going on. Maybe he can put her on another biologic that won't have this side effect.

Hi RonRoush7,

Thank you for your reply and caring words,
The main problem is that she either can't see it or won't admit to the anger, What makes it worse is that we have no one around who has known her long enough to be able to tell her that she has changed, with all of her studying and crohns related issues we haven't really had chance to make a close set of friends.
We are going to see a marriage counsellor in just under 2 weeks so hopefully that will help her to admit some thing is wrong and be truthful to her self.

If she can start to admit to her self that she needs help with the side effects by looking at OR for another route for medicine or natural way then that would be a great breakthrough.
05-22-2017, 07:07 AM   #4
ronroush7
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I wish you the best. Keep us updated.

05-22-2017, 08:20 AM   #5
Tuff
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http://www.crohnscolitisfoundation.o...epression.html
05-22-2017, 08:50 AM   #6
I_Love_Dasha
 
Join Date: May 2017
Location: Sydney, New South Wales, Australia
Hi Tuff,

Thank you for your link but it wouldn't help, she won't watch it because
"it's wasting her time because she knows her body & she's fine"

What I'm looking for is other people who have / are going through this and what they have done to help themselves. ie what other medication / Natural way to help, so I can research that and then show Dasha that if she does come to terms with the fact she has changed totally since being on Infliximab & she still has other avenues to go down which would also offer (hopefully) the same results but not these side effects.

I can totally understand her fear IF fear is the reason behind her denying it but I am not 100% convinced she really sees it, The drug has obviously changed her thoughts, feelings and emotions and she is fighting it all whilst losing herself to it....

It's such a tough position for us both to be in
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