General Advice?

[Silmaril]

Hi All,

I am the partner of a newly diagnosed Crohns sufferer and this is my first post on the forum, apologies if i am posting to the wrong section but it seems to be the most relevant.

My partner was diagnosed about 2 weeks ago after a flare up which landed her in hospital for two weeks and i feel that the information she has been given regarding the disease and treatment options is rather limited and have done a lot of research into her options because of this.

The purpose of my post really though is that her parents have done some research of their own and they are encouraging her to try a diet based solution, i believe this is because they are in denial of the severity and because the severity has not been very well explained

I am trying to get an indication as to how viable a solution (even if short term) attempting to control with diet would be as i disagree with her parents on this.

My understanding is that when the disease is active it should be treated to be put into remission. If remission occurs then it may or may not be possible to move to a diet based option however remission is only likely to occur through medication and/or surgery.

My worry is that she will listen to her parents (as she has a tendency to do so) and will try to manage this through diet while the disease is active which will cause her more damage and risk further complications.

How many of you are able to manage entirely through diet and did you do so from the offset?
How severe was your initial flare up and did you go against the doctors recommendations of medicating?

My partner is young, just 25, and so in the short term really she wants to be able to maintain a normal lifestyle as much as possible and from what i understand this would be best done through medication rather than lifestyle changes.

As for whether infusions or home injections are the best option to start with i do not know, the pro's and con's of the two options have not been discussed with her effectively at all with just leaflets regarding them being given.

The doctors are pressuring to start her on medication ASAP, i think this in itself is a sign that she needs to.

While i don't have it currently i have asked her for the information she has regarding her MRI (i remember that it was described as patchy) which may help people to gain an understanding of the severity but i can advise that her flare up is still occurring and she is currently on a 2 month (steadily reducing) course of steroids

If you have any questions ill do my best to answer/find out but really this is just to try and find out what people who have suffered for years might say to a person who has just been diagnosed and doesn't know how best to start a treatment plan, is it right to trust the doctors opinion? should she get another? should she try diet for so long then medicate?

So many unanswered questions its very difficult to understand what best to do

Thanks in Advance

~SiL

 

[ellie]

A couple of observations..
Crohn's is a "benign" disease(i.e. not cancerous, though not necessarily an easy one to manage.)
My impression is that the first step is to get the initial flare under control - often using prednisolone - while working out how serious the disease is in each particular person, and where it is located, and initiating maintenance treatment +/- dietary adjustments to achieve ongoing remission.
I'd be reluctant to presume that diet alone would be enough.. (And I DO have mild colonic Crohn's, managed with sulphasalazine at this stage)
As far as I can tell, the aim of the exercise is to achieve an asymptomatic life, and not have the disease quietly causing damage.. and ideally colonoscopic remission.
Be guided by your GI consultant - if improvement is easy, then consider lowering the doses of maintenance meds, or even changing to a lower strength maintenance med. At the same time, pay attention to dietary effects .. Check out dairy, gluten, raw leafy salad vegs, and see what causes symptoms..


HD

 

[Silmaril]

Thanks for your comments

She is on those steroids currently but they want to start her on remi or humi from next week though have not really explained why. They have performed a flexible sigmoidoscopy and an MRI... I wonder if they have found something they have not discussed yet - Fistula?

Her diet since coming out of hospital has been largely what it was before the flare up, and she is starting to notice differences in how her gut feels but hasn't yet been able to pin point what might be making it worse (drinking at the weekend no doubt didn't help her!) but she has eaten salad virtually every day.

Are there many people with a medical background on this forum? I can post the MRI notes later today you see and i feel that these may help a professional to understand why the doctors are suggesting remi/humi

Thanks
~SiL

 

[Patricia56]

Particularly in the UK, the fact that they are suggesting remicade or humira from the start tells you that she has severe disease. They just don't do that there. There's a strong preference (based on the many posts I've seen from folks in the UK) for using a step up approach where she would start with AZA (Azathioprine/Imuran/6-MP) or MTX (Methotrexate).

You are welcome to post the details from the MRI/MRE and there's likely to be some people on the board who feel qualified to comment. If you have a copy of the biopsy report and the scope report those may be helpful too.

I personally would never call Crohn's a benign disease. It does not kill outright but it can be disabling, lead to permanent pain and the kind of suffering that makes a normal life impossible. People would not be going on these meds if Crohn's was benign.

I know there are some people on the board who will chime in about the dietary approach who are much more familiar with the SCD for example. My son did EEN (exclusive enteral nutrition) via NG tube for 10 weeks which got him into remission - until he started eating again. So we did more EEN - another 8 weeks and he could not tolerate food without starting to flare.

At that point we went to 6-MP which got him i nto partial remission but he still wasn't growing and he wasn't really well. So we stepped up to Humira after almost 18 months of treatment and that, combined with 6-MP, got him into remission.

He is now on Remicade and MTX. He was in the hospital for 10 days in January with his most serious flare ever. He started Remicade while he was inpatient and the effect was dramatic. He is currently on Remicade every 5 weeks because the standard treatment regimen of every 8 weeks was not working.

It's great that your partner has you - if she will listen to you. But it may be a losing battle if you are going up against her parents head to head. Educating them about the disease may or may not make a difference if they are feeling scared about the medications. A very recent, very large study was just published that found no association between remicade and cancer. This is one of the big things people are always scared about but the risk is just not there. Another study of remicade patients found the highest level of mortality among those on prednisone.

Of the drug options available, I personally would rank prednisone as much more dangerous than remicade or humira. It's a rescue medication used with severe disease flares to suppress inflammation. It doesn't heal the gut like remicade will do.

Can you get your partner to post to the forum? It might be best if she heard from others directly about being diagnosed and whether to try diet or meds or both.

 

[Silmaril]

Thanks for your highly informative post!

She does indeed listen to me and im not going anywhere whether she likes it or not

I thought the same regarding step up treatments from what i have read, the UK way is to safe money where it can and so if they can fob you off with a diet for a few years then they will do.

I have encouraged her to sign up to some forums and im sure that she will soon.

I'm also hoping to get those reports when we see the consultant next Wednesday and take it from there, i also feel that she should have a second MRI because they have suggested on the MRI report (though i dont have it yet still, sorry) that there was slow transit and they have assumed that an area is affected by the disease based on this but have not seen the evidence as the dye had not fully progressed through here system

Thanks,

~SiL

 

[Patricia56]

They can tell a lot even without the dye so may be making that assertion based on earlier image taken before they put in the dye.