Update on my horrible flare!

[Astra]

I haven't been on the forum for a while, I just feel so depressed!
I have been on Humira fortnightly since January and 6 weeks ago the doc added Methotrexate 25mg once a week with Folic acid 5mg.
I also was told to stop the Pentasa after 8 years.
I have been feeling terrible ever since! Constant diarrhea, sometimes up to 8-10 times a day, back ache and very tender in LRQ.
I just want to stop all this toxic **** going into my body cos I'm not responding!
Is it just a coincidence that this started with the Methotrexate? Or...
Since I stopped the Pentasa?
I'm considering a resection, but....?
I have a consultation on the 23rd to discuss options, the doc won't let me have any steroids just in case I have surgery and need to be 6 months free of steroids to promote healing. Entocort would stop this flare in it's tracks.
I'm sooooooooooooo down

 

[Cat-a-Tonic]

Aw Joan, I'm so sorry to hear it. If it were up to me, I'd take Entocort over surgery! I'd also consider other meds (including the non-mainstream stuff like LDN) before getting cut open. Just me of course, but surely there are things you haven't tried? Infliximab? Not that you want to be a guinea pig, but that's still got to be better than surgery?

I hope things go well on the 23rd and you're given some options to consider. I know surgery was on the table for you in the past, so if it comes down to that, I hope it gives you years of good remission. Big hugs, and keep us posted on what happens on the 23rd!

 

[Astra]

Thanks Cat, girl after my own heart!
I remember the consult with the surgeon last year who said no. He wouldn't operate on something that's been in situ for 50 years! He reckons it causes more complications such as loops, kinks, narrowing etc.
Maybe I just need to be a patient patient and give it time to get going. xxxxx

 

[CrohnsChicago]

I'm very sorry you haven't been feeling well Astra.

I know Jen has been having possibly Methotrextate issues herself lately. I agree that stopping the Pentasa could also be a possibility. These drugs can to such unfortunate things to the body yet we have to depend on them so much and sometimes only hope that things work out

Thanks for taking some time out to let us know how you have been. I really hope things start to turn around for you soon. I hope your appointment on the 23rd turns out to be very productive and promising. Take very good care of yourself.

 

[Astra]

Thank you so much CrohnsChicago xxx

 

[Cat-a-Tonic]

I don't know if I'd take your surgeon's advice as an answer, Joan. Sounds to me like a convenient way for him to brush you off. Maybe surgery isn't the answer, but I don't necessarily think that giving your current regimen more time is the answer either. I don't pretend to know what the answer is, but it sounds like you're doing really poorly so clearly something needs to change! Good luck and big hugs, I will have my fingers crossed on the 23rd that you get a lot of good options to consider.

 

[Josephine]

Good luck on 23rd, feel better.

 

[Jennifer]

I'm sorry you still aren't doing well Astra. :hug:

Seems a bit late for them to add the Methotrexate. From what I understand with the biologics is that if things aren't working/improving by 6 months then it may not work so to me it feels like they waited too long to add on another medication (not saying that it wont ever work, I just don't understand why they waited). Its possible that the Pentasa was doing something but likely not enough as its a pretty mild med and isn't the best for Crohn's because its topical.

Methotrexate can cause diarrhea so hopefully your GI will be willing to either try something else or lower the dose to see if that helps reduce the side effects (assuming you want to wait and see if it helps).

A narrowing could possibly explain the LRQ pain and the back pain (my back hurt so much when I had my obstruction, a partial obstruction could cause back pain as well).

I've never heard of having to wait 6 months after taking steroids before doing surgery yet if steroids would help get the inflammation under control to avoid surgery then I don't quite understand their reasoning.

I hope you and your GI can figure out a new plan to help get the flare under control. It may still be possible to avoid surgery. :hug:

 

[Astra]

Thank you Jennifer xxx
I do have a lot to consider, I don't want surgery, and if it's down to choice, I'd choose Entocort. I have had horrendous diarrhea since the Methotrexate so it's gotta be the cause. I started taking Pentasa again today.
Thing is, every time I have a consultation I have a different doc, each doc talking about different things! The one who put me on Metho isn't my consultant, he was there cos my doc was on annual leave. He's the one who mentioned being steroid free for 6 months before surgery. It's a nightmare!
xxx

 

[Jennifer]

Oh no that's terrible. D: I've had to deal with that with seeing general practitioners in the past (different one each time, thankfully not anymore) but can't imagine doing that with a specialist. Seems so unprofessional. I hope you'll see someone with sense on the 23rd. *HUGS*

 

[Astra]

Hiya everyone
Still poorly, and off the Methotrexate, Thank God, toxic ****.
The only way I can describe this pain is sunburn, maybe someone can relate.
So I saw the consultant on the 23rd and we talked for ages, the conclusion is surgery.
I have scar tissue that won't go no matter what gets thrown at it. I'm to carry on with the Humira til the referral comes through.
The reason for this is the inflammation, it's helping with it, but the scar tissue needs to be cut out, it's narrowed and giving me gip.
I feel ok about it, I believe it's the right decision.
I will keep you posted, hope everyone's is doing ok xxx

 

[ronroush7]

Hope you feel better soon.

2

 

[Jennifer]

I hope the surgery will help kick start remission for you so you can finally start feeling better. Keep us posted on the date.

 

[CeeCeeGo]

Hi Joan

Sorry to hear that you are still feeling lousy but hopefully the surgery can get you feeling better.

Lucky you off the MTX. I'm still on it (8 weeks now) and my GI wants me to give it another 8 weeks to be sure. Not noticed any improvements yet and like you have more D and pain on LRQ/LLQ.

I think I know what you mean by sunburn type pain. I would say for me it is like internal sunburn. Do you have to take meds for your pain?

Let us know when your surgery is planned for and I hope you start to feel a little better soon.

Take care
Carol
xx

 

[LodgeLady]

Hope you can turn the corner!! :ghug: