When were you ready for surgery?

[lookame]

This is part vent part question.

I'm tired....I'm so so very tired. I thought I had found just the right mix of meds to keep me healthy enough (not super healthy but enough that bathroom visits were limited to 3ish times a day and in the morn). Double dose Remicade, 50 mgs 6mp and 4 pills of lialda. Well after about a year and a half to 2 years on Remicade I'vebecome allergic...ii had hives in my throat and hives around my mouth. So i got switched to humira. All during pregnancy it was fine then after birth and pow! Symptoms! I've slowly been getting worse over the last 4 months and it'd be one thing if it was pain or needing to go often but I have diarrhea so watery and urgency so bad I could try to hold it and i still have a waterfall...on a DAILY basis i have at leadents, I wake up 3-5 times a night (sometimes I just sleep on the floor next to the bathroom so I'm right there) i can usually get through the day but if i feel i need to pass gas it's usually a bad sign (either it'll be a bloody/mucous fart...that's a good day, or it'llnot be gas at all...)

I'm feeling like I'm just done. Yes I can change meds again, up my dosage of humira, hop on 6mp now (i came off it during the pregnancy) but im feeling like....whats the point? I still have this diseased colon which meds sort of help. My husband wants me to try other meds though because he feels i think surgery is an easy fix (i dont but im looking at the fact that once everything is healed am i going to have to sleep next to the bathroom? Am i going to have to miss my kids activities because i didnt make it to the bathroom? Am i going to have to clean up the bathroom everytime i go to the bathroom? ....could i....dare i say...actually plan a full day and not have to worry about where the bathrooms are, if i have changes of pants/undies,not having to worry about being directly next to the bathroom all.the.time....)

I am calling my GI on Monday and I'll be put back on 6mp. I'm nervous to bring up that I haven't been doing well because I don't want more meds like suppositories. Honestly I'mso tired of being sick...ii feel like sin e my diagnosis I've just been varying degrees of sick (while on Remicade i was not to sick but still sick)...

Anyway my question...when were you ready for surgery?

 

[FrozenGirl]

I am on almost the same Meds, 2x Remicade every 4 weeks, 50mg of Imuran, and 4.8g of mezavant (Lialda). For now I'm doing the same as you were, okay but not great. Honestly if I were to have a reaction I would be at the surgery stage. I actually really considered it when remi didn't work for me initially. My view ( as someone who hasn't had surgery) I think there comes a point where you just want to stop experimenting with meds and really do something concrete.

Very good question. I hope you find a good compromise that works for you.

 

[Polaris]

I also think this is a great question. Lately I've been wondering the same for myself. Every med I've tried so far has failed. How many meds/trips to the bathroom/vomiting/nausea/episodes of pain, etc. do we have to go through until we get relief? My doctor and a friend with Crohn's both say surgery is NOT something I want. I don't know what to think anymore.

 

[lookame]

Stelarjess my GI keeps coming around to surgery like it's inevitable in my case that I'll need surgery.

 

[Polaris]

Mine keeps throwing meds at me and it's getting old.