When to say enough is enough and move on with treatment

[Turfymantis]

Hi, this may be a long one sorry!

Diagnosed in 2013 with mild crohns only treated with short course of entocort and then pretty much left to my own devices. Last august had a bad flare and ended up in a&e treated for two days in the hospital and ended up with a new Gastro dr who has largely been great. Symptoms continued to get worse with urgency and increased bowel movements through to feb with increased pain and nausea where she admitted me straight to a ward and I had colonoscopy and endoscopy which showed my area of disease had doubled at least in length from 7 years ago and also have gastritis. Had also lost 12kg in 6 weeks before admission. Shortly before admission had ct scan and this confirmed active Crohn’s disease. Admission lasted 3 weeks and was on a huge amount of IV drugs, prednisone, omeprazole, morphine, paracetamol, magnesium, cyclizine, potassium, fluids, vitamin replacements, metroclopromide and probably some other things I don’t remember. I was also tube fed for a lot of the stay. They commenced mesalamine when I arrived and Azathioprine a few days before I left. When I left I wasn’t feeling great but understandably with what’s going on at the moment and being immunosuppressed I was better off at home.

I have been at home for 6 weeks now and whilst I am better at moving around etc I have no energy, still feel nauseous, my skin has a constant burning feeling, I am literally RUNNING to the toilet 5 times a day, I can sit there for 20-30 mins each time and in between I have constant cramping. And in the last week the pain has been excruciating to the point where if it wasn’t a Sunday today I’d have rang my IBD Nurse and asked her advice but luckily she’s calling me tomorrow so I’m just going to wait it out (I was meant to go to the hospital tomorrow for a check up but they are being done over the phone).

so, finally, sorry for the essay!! But am I within my rights to say I’ve had enough of taking 50/60 pills everyday and seeing no improvement and actually a decline to the point where I nearly feel the need to go back to the hospital? And ask what my other options are? I am told every week on phone calls with my nurse (which are really appreciated she’s great) that they are waiting for the 8 week mark for Azathioprine to work, but I don’t see what two weeks is going to achieve if I’m getting worse now? I know Azathioprine can take a lot of time to work but I’ve been in this state since September and I’m continuing to get worse I don’t think the answer now is hold on and wait.

lots of info and questions I know but if anyone can give any advice that would be great. Thankyou!

 

[my little penguin]

Hugs
The problem in ibd land is all maintenance meds take 6 weeks to 12 months to work depending on the drug
A lot of docs give bridge therapy of steriods until the maintenance meds kick in to work
Aza can take 8-12 weeks to work
So you are half way there
The next meds would be one in the same class
Methotrexate which tajes 12 weeks to work
Or move on to biologics which remicade takes 6 weeks to work /humira takes 12 weeks to work

so even if you switch your going to have to wait an additional 6 weeks to 12 weeks for the drug to kick in

if you don’t want steriods as a bridge therapy for the next two weeks
They have similar success with exclusive enteral nutrition (formula only - modulen is used in the U.K. I believe )
No solid food just formula only which stops inflammation until food is reintroduced

there is also neocate splash

to put it In perspective Ds started stelara (biologic ) in aug 2017 (switched from humira -started feeling poorly in March 2017)
Was put on steriods as a bridge but still felt poorly until March 2018 when Stelara kicked in fully
No issues since
Unfortunately it takes a very long time

 

[Turfymantis]

Thanks for replying!

so I’m still on entocort, mesalamine and aza at the moment so still on steroids which is why I feel like this is all quite excessive for little return. I also take hydrocortisone replacement therapy for Addison’s disease! So a lot of steroids all around.

I suppose I was just hoping for some more improvement after 6 weeks, day by day, I’m not looking at the big picture as I know it doesn’t work like that, like you said it’s difficult and it takes a long time. But as I’m getting worse I’m wondering how long do I let this go on. Infliximab I’m wondering about as I know a few people through other family members who literally swear by it. Whilst I don’t want to have to move onto other bigger treatments I have to start weighing up quality of life.

thanks again!

 

[Turfymantis]

Hi,

I have a bit of an update and just need some advice.

My GI called me this evening, she’s great and I can’t fault her. I told her all of the above including that last night I nearly passed out on the toilet. I’ve also lost 2kg in 6 days and she said this is often the pattern of how I get sick. She said I need an urgent xray and fecal calprotectin. She said that if my FC comes back over 500 which she thinks it will (last time I was in a flare in Feb it was nearly 1000) she can put a case together for me to be put onto Infliximab.

advice please though. With it being a weekend, the xray won’t be until early next week and she of course said that if my pain becomes too much (I feel tho it already is as I’m starting to take morphine again) then I’ve to present to the hospital and that this wouldn’t be the worst thing as she could treat me with iv hydrocortisone and get some urgent tests done. She knew I wouldn’t go for this option so she left it with me. I’m just stuck as Im wondering do I bite the bullet and go now or wait for the planned xray during the week and see what that says and try ride out the pain? I am getting so tired!!

thanks for any help!

 

[my little penguin]

X-ray typically doesn’t help much for crohns
Looks for obstruction/constipation but won’t show inflammation wise you need ultrasound /scope /MRE for inflammation
If your bad enough to ask on here if you should go to the ER /AE then most of the time you should just go

easier when your the parent of the ibd
Then it’s simply -bad pain equals hospital end of story

 

[Turfymantis]

Thanks for your reply!

GI said xray useful as I usually suffer from constipation (tho not for the last 6 months) and could give some inclination if I am having overflow as I am going 3-5 times a day.

I know it’s inevitable I’ll end up there it’s just difficult right now as hospitals typically aren’t the best places to be right now plus I only got out recently after a traumatic (over 30 cannulas in 3 weeks and ended up with a Picc line, eventually couldn’t feel my hands or arms). Just having a battle of the mind right now!

 

[BilboTheApe]

Would you be open to trying EEN?

I myself ended up in hospital a few years back in sort of similar circumstances to your own. I had started on Humira which wasn't really working all that well.

While in hospital one of the GI doctors decided to start me on EEN, and thank the heavens she did. It really turned things around for me and just gave me some much needed breathing space. After that the Humira started working and I was able to avoid potential surgery. Maybe it can help you avoid the hospital?

If you can tolarete it, EEN can really be of great benefit. It is no cure, but it can give you time to calmly decide what your next steps will be. Making decisions on treatment in haste and in a panic is no fun.

Best wishes.

 

[Turfymantis]

Hey thanks for your reply

she mentioned a liquid diet (is that the same) over the weekend just for a rest so I’m giving that a go today and tomorrow. I’ve given it a go previously whilst I have been in the hospital and when I’ve been out and can’t honestly say whether it relieved me of any symptoms but as I said to my dr yesterday I’m willing to try anything right now!

 

[my little penguin]

Not a liquid diet
Een is exclusive enteral nutrition (formula only )
Modulen if in the U.K. semi elemental formula
forstips is polymeric version
Peptamen in the US is semi elemental

liquid diet is just drinking smoothies /tea/ purée soup not the same
Tom is given in the hospital in the vein -again not the same thing

Een is as effective as steriods for crohns disease

e028 splash or neocate splash are other options
Some use Boost or ensure if they can tolerate it
Formula with complete nutrition
No solid food only formula for 6-9 weeks

 

[BilboTheApe]

Yep, my little penguin gave some real good info.

EEN is basically receiving all of your nutrient needs from specially formulated drinks which are very bio available (easy to absorb). You have nothing else except water.

The hardest part is the length of time you are on it for. I was on it for 6 weeks. It sounds scary I know, but it really does work and can help turn things around.

I would at the least ask your doctor what they think

 

[Turfymantis]

Ah ok sorry by liquid diet I meant ensure only, I’ve been doing that today and will do tomorrow hopefully until I get the urgent xray tho I am thinking I may go in tomorrow as I didn’t sleep again last night and have failed to go to the toilet today so worried as the dr said I may be showing signs of constipation (another sign usually that I am getting sick) so I am taking lactulose!

6-9 weeks on the een? Wow that is truly a long time. it is such a mental battle...

 

[BilboTheApe]

It is totally a mental battle turfymantis, this whole disease is just as much a mental balancing act as it is a physical one. I feel you on that one. I hope you get better soon.