Is MAiD an option?

[Tilly]

I spent most of my life battling this illness and honestly I'm just tired. I was diagnosed when I was 10, but had symptoms as young as 7.

Purinethol worked more or less for about 10 years... then nothing. For the past few years every single treatment I've tried failed: Purinethol, Stelara, Entyvio...even Cortisone sometimes needs to be injected at higher doses.

I'm now taking 2 injections of Hyrimoz per week and I just want to throw the pens out the window every single time I look at them. If they worked it'd be one thing, but yet again another failure. Doctors are just being persistent because at my age, even surgery would mean complications by the time I'm in my mid 30s.

I used to have a mindset where I though I'd never let this illness stop me from doing what I want. Now, I've asked my doctors to help me get medical assistance in dying. I'm not sure if I'll be accepted but if I am, how should I break the news to others?
Am I a coward for wanting to take this route instead of toughing it out?

 

[my little penguin]

Have you seen a medical coping psychologist??
How old are you and what meds have you tried ?
There are plenty of options other than Hyrimoz(humira )

my kiddo was dx at 7 - now 18
He has tried alot but found things finally got good on the combo of Stelara and methotrexate
He has been well for over 5 years now

tagging other parents on here
@Maya142
@Pilgrim
@Catherine
@crohnsinct
@pdx

please talk to a psychologist
And express to your Gi the need for different meds to calm things in your gut

 

[Tilly]

Have you seen a medical coping psychologist??
How old are you and what meds have you tried ?
There are plenty of options other than Hyrimoz(humira )

my kiddo was dx at 7 - now 18
He has tried alot but found things finally got good on the combo of Stelara and methotrexate
He has been well for over 5 years now

tagging other parents on here
@Maya142
@Pilgrim
@Catherine
@crohnsinct
@pdx

please talk to a psychologist
And express to your Gi the need for different meds to calm things in your gut

I've been seeing a psychiatrist who's working with my GI. She knows that finding something to soothe the symptoms is the only way to make any progress so we talked again to my GI about meds.

She said if this treatment fails again one new option has been approved for crohn's and another one she could fight for even though it isn't fully approved yet. Or else it's surgery and even that doesn't solve the issue.

Seeing as I'm only 25 and remission on these medications don't typically last that long, the prospects look somewhat bleak.

Still, I'm glad that Stelara and methotrexate worked for your child!

 

[my little penguin]

Have you tried een (exclusive enteral nutrition) ?
Formula only - no solid food
This is used in place of steriods and stops inflammation.
They use it in kids a lot
Entyvio,Stelara,rinvoc are all options .

have they done genetic testing ?
A lot of early onset ibd (those dx before age 10 )
Can have disease that mimics crohns
Auto inflammatory disease also tend to mimic crohns but have different treatments

my kiddo has juvenile arthritis ,crohns and auto inflammatory (sweets syndrome )
The sweets syndrome requires a different biologic than the crohns /arthritis
So always good to make sure the extra symptoms are from crohns

until we add the extra biologic for sweets he was miserable

hugs

 

[my little penguin]

Tagging @Delta_hippo

 

[pdx]

Big hugs to you. My daughter is 20 and has a Crohn's history similar to you. She had many years of remission on Remicade and methotrexate, but lately has had a few years of uncontrolled disease, and that, combined with Covid shutdowns, has been really hard for her, physically and mentally. During her first 2 years of college, she was only on campus one term.

She finally had surgery last summer, and we are cautiously optimistic. Her calprotectin went from 7000 to 80 three months after the surgery and she is feeling good. She's back at her university now taking a full-time engineering schedule, and living in an apartment with friends. You are right that surgery can mean complications down the road, but we are hopeful that getting rid of the 10 cm of intestine that was scarred and strictured and always inflamed will allow meds to work better in the future.

My daughter did try EEN last spring. She used an NG-tube to get all her nutrition from formula for 6 weeks. Unfortunately it did not reduce her inflammation, but it did reduce her pain a lot and allowed her to increase her weight to a healthy level before the surgery. I think that being well nourished for the surgery probably helped with her recovery.

It sounds like there are treatments you could still try, including adding methotrexate in addition to biologics as you try them. Methotrexate is a Crohn's treatment on it's own, but also seems to boost whatever drug it is used with.

I wish you the best of luck in finding a treatment that will work for you. And if you don't find one, I think it is worth considering surgery. Obviously I don't know your particular situation so maybe surgery is not a good option for you. But I think I wouldn't worry about complications 10 years down the line when you're feeling so awful right now.

 

[Delta_hippo]

Oh you poor thing I am so sorry to hear how much you are struggling.
A few thoughts.
Is the tiredness and fed up ness solely active disease or is there a possible bit of anaemia or malnutrition adding to the overall feeling crap? Just wondering because you have had Crohn’s for a long time if iron levels for example running low and adding to your misery.
Second it might be worth showing your psychiatrist the Briggs protocol which is a regime for Ulcerative colitis that uses an antidepressant to reduce inflammation so may be worth a look
Third there is a big difference between psychiatric support (more emphasis on meds) and psychology support (talking therapy) and within the psychology field there are very different approaches and different therapists. With all you have gone through a good therapist might be well worth finding to help you figure out living well with a chronic condition
Fourth is it worth looking at what else you could potentially add to your biologic to help? For example anti inflammatory diet, vitamin d, supplements. I like the ibd-aid diet (and there is a very friendly and supportive Facebook group) but scd and cded also worth a look.
Finally for now there is absolutely a life worth living for you despite what Crohn’s or some other curve ball throws at you. In my experience it has involved a bit of reevaluating priorities and a change of focus to what can I do rather than what can’t I. Hence recommending finding someone to think all this through with.
If I think about my Crohn’s I do hate this disease and would give pretty much anything, loved ones excepted, to go back to being healthy. It has taken a lot from me, physically, financially, assumptions I made about the future.
But. But. I am a kinder person. I notice more when others are suffering. I am more gracious and understanding. I am less materialistic. I live more in the moment.
Finally finally!. There is a lot of research into Crohn’s these days. New approaches and meds are in the pipeline. Even if you end up with temporary surgery, it may buy you time until something new that works for you gets developed. Now is a much better time to have Crohn’s than 20 years ago and a hundred times better than 50 years ago.
Wishing you lots of love. Hope things feel better soon.

 

[Tilly]

Oh you poor thing I am so sorry to hear how much you are struggling.
A few thoughts.
Is the tiredness and fed up ness solely active disease or is there a possible bit of anaemia or malnutrition adding to the overall feeling crap? Just wondering because you have had Crohn’s for a long time if iron levels for example running low and adding to your misery.
Second it might be worth showing your psychiatrist the Briggs protocol which is a regime for Ulcerative colitis that uses an antidepressant to reduce inflammation so may be worth a look
Third there is a big difference between psychiatric support (more emphasis on meds) and psychology support (talking therapy) and within the psychology field there are very different approaches and different therapists. With all you have gone through a good therapist might be well worth finding to help you figure out living well with a chronic condition
Fourth is it worth looking at what else you could potentially add to your biologic to help? For example anti inflammatory diet, vitamin d, supplements. I like the ibd-aid diet (and there is a very friendly and supportive Facebook group) but scd and cded also worth a look.
Finally for now there is absolutely a life worth living for you despite what Crohn’s or some other curve ball throws at you. In my experience it has involved a bit of reevaluating priorities and a change of focus to what can I do rather than what can’t I. Hence recommending finding someone to think all this through with.
If I think about my Crohn’s I do hate this disease and would give pretty much anything, loved ones excepted, to go back to being healthy. It has taken a lot from me, physically, financially, assumptions I made about the future.
But. But. I am a kinder person. I notice more when others are suffering. I am more gracious and understanding. I am less materialistic. I live more in the moment.
Finally finally!. There is a lot of research into Crohn’s these days. New approaches and meds are in the pipeline. Even if you end up with temporary surgery, it may buy you time until something new that works for you gets developed. Now is a much better time to have Crohn’s than 20 years ago and a hundred times better than 50 years ago.
Wishing you lots of love. Hope things feel better soon.

Oh, malnutrition and anemia are definitely not helping. Since another issue was resolved, with iron supplements the anemia is finally somewhat under control. As for the rest, a nutritionist is part of the team helping dose the supplements I need now that I'm forcing myself to eat again.

As for said team, they have a psychologist that specializes with patients with Crohn's and Ulcerative Colitis. My psychiatrist's work is in addition to that and more complementary. That said, I do understand that there is a huge distinction between the two.

I guess your last point is the one that hits the hardest... so far I haven't met anyone who really cared to understand what it means to have this illness, hence why I decided to ask my questions here. Maybe having that support would have made a difference.

Still, you're right about the research. Going from being pressured 15 years ago to take Remicade, to having so many options on the market is already a huge step. They may not work for everyone, but it's better than back then for sure.

Thank you

 

[Maya142]

I am so glad you are seeing a psychiatrist, but are you seeing a psychologist too? Seeing one that specialized in IBD patients helped my daughter immensely. Like @pdx 's daughter, she has struggled with severe disease (but in her case, she has very severe arthritis and mild to moderate Crohn's and pretty bad Gastroparesis) and isolation in the pandemic. She really struggled through college and was hospitalized 16 times and had 10 surgeries or so and had to take many medical leaves of absence. It has been very hard - she has been on 9 biologics and many immunosuppressants and struggles with severe pain. But things can get better. There are new meds being approved often. Some people also need two biologics - my daughter has been on two biologics for several years and I know we have one member on the Parents' forum that has a young adult daughter who has struggled with very severe Crohn's and has also been on two biologics for several years. So for example - Entyvio and Humira (Hyrimoz), Stelara and Remicade etc.

For her, seeing a psychologist helps a lot, as does staying in touch with her friends, volunteering for the Arthritis Foundation and eventually, she hopes to get a job in the next year doing research (she was a chemistry major). It sounds silly, but we got her cats and no matter how miserable she is, they make her smile. She used to be very private about her medical conditions, but with the help of her psychologist, started telling her friends and they go out of their way to help and support her.

She is nowhere near remission in terms of her arthritis, but we still have hope. We know there are a couple of options in the pipeline and we hope they will work better for her.

It sounds like you DO have options left. There is Risankizumab (Skyrizi) that was just approved for Crohn's. There is Xeljanz and Rinvoq - Rinvoq is in trials for Crohn's and it's doing really well! My daughter has been on it and while it did not work for her arthritis, it worked for her Crohn's. Rinvoq is different from the biologics you have tried - it's a JAK inhibitor and a daily pill and it has a completely different target compared to Humira.

Additionally, surgery can make a huge difference for some people and after that, the biologics work much better. My daughter has not had surgery for Crohn's, but she had needed surgery for joint replacements at 22. It was a last resort, but it helped her pain and quality of life a lot.

She struggled with severe malnutrition and that can also cause all sorts of symptoms. She eventually used a feeding tube to gain weight and it made a huge different to her quality of life. EEN might be a good option to consider.

I will tag @crohnsinct - her daughter is the one who has been on two biologics and has severe Crohn's. She also has had to have surgery - an ileostomy - and it greatly improved her quality of life.

Things can get better. Sending hugs and hang in there!!

 

[Maya142]

I want to add - don't discount medications like antidepressants that your psychiatrist can add. Your depression may be directly due to your disease and circumstances, but that doesn't necessarily mean an antidepressant won't help. It won't magically fix everything, but it really can help. My daughter has been on one for years and recently switched and she has noticed a big difference.

 

[Delta_hippo]

A couple more practical things, when I was struggling to regain weight and at times when eating has just felt really hard then smoothies have been very helpful especially when you chuck high fat things in like coconut milk, avocado or nut butter.
Also when you are worrying about running out of treatments there is the anti-map antibiotics option (like everything seems to do wonders for a few, not a lot/ gritty side effects for others). Redhill biopharma did a study a couple of years ago I’ll try and find it.
In terms of therapy I just think there is so much potentially traumatising about Crohn’s and you are right that having good support and people around you makes a real difference in how you find a way to cope. It sounds like you have a lot in place but when you also describe wondering about medically assisted dying it just feels like there is maybe a piece of the support jigsaw missing or something is not being “got” about how hard this illness can be.
I don’t know if any of this helps but I felt so sad reading your post and wanted to think of something comforting even if I have missed the mark maybe.
Hope the eating and the iron supplements etc are starting to help.

 

[Delta_hippo]

https://www.redhillbio.com/news/new...udy-of-RHB-104-in-Crohns-Disease/default.aspx