Surgery or biologics

[Chrissy77]

I'm new here, just hoping to find some guidance maybe, edification. I've had symptoms of Crohn's since 2004, diagnosed in 2010 (strong family history of colitis and Crohn's). I'm a more constipated person which is why I think mine has taken longer to get so bad. I'm at the point now where they want me to start biologics (colonoscopy showed 3 deep ulcers at terminal ileum where disease rests). I, however, do not WANT to take anymore meds. I am highly susceptible to side effects like prednisone which causes severe body aches (always need Vicodin or something stronger whilst on that med) and episodes of psychosis (I'm bipolar). All my life I've been more sensitive to medications. I would personally prefer a stoma for bowel rest. I'm curious if there are others who feel the way I do about the pharma end of things? Just looking for thoughts and opinions.
I return to the gastroenterologist the beginning of September and am researching as much as possible. I honestly never thought I would get to this point; always somehow thought it would just go away....Yes I know that's not possible lol.
I've read so many studies and blogs and research. I think I'm more confused because of it

 

[ronroush7]

Welcome. When you go back to the doctor in September, let him know all your concerns.

 

[Chrissy77]

Thank you

 

[Caitlyn336]

One thing to keep in mind is that Crohn's affects much more than just the intestines and colon. Even if you get a colostomy bag Crohn's could still impact your skin, eyes, energy, and more. Medication may be able to treat more of those areas than surgery.

 

[Maya142]

I wanted to add - the stoma might help, but it won't take away all the inflammation. Over time, if the disease is uncontrolled, it's going to cause more and more scar tissue and you will keep needing surgery. Once you have surgery, you are much more likely to need it again.

My daughter is the one who has IBD, not me. She is also very sensitive to meds - had a bad time with Imuran, MTX, LOTS of side effects on Prednisone (though that is common, unfortunately), but she's never had side effects with biologics. No issues at all! No increase in infections or anything like that and she was on them through middle school, high school and now college.

I would look at the research very carefully. I think your best chance at remission is probably what your doctors are recommending. Remember that all medications have potential side effects - even Tylenol! But the key is that they are potential. Our doctors (both rheumatology and GI) say biologics are very safe and effective medications.

CCFA has a good presentation about the risks vs. benefits of various IBD meds: http://programs.rmei.com/CCFA139VL/

It's not about surgery - I would research that separately and the chances of recurrence after surgery - but it does talk about the safety of the common IBD meds.

Good luck!!

 

[Chrissy77]

I appreciate all the info!

 

[Guerrero]

Hi chrissy i think side effects of biologics are not that bad as prednisone (especially psychological ones).
In my case I hope biologic (entyvio) start working for me so i can quit prednisone as soon as possible.

You should discuss with your doctor which treatment could be milder on you considering your history. Staying without medication could be more risky and expose you to eventual surgeries or emergency issues and in those case its very likely they give you steroids again.

 

[Toni68]

Hi maya I've read about yours daughters before and their success on Simponi and I was just wondering have you ever heard of anyone building antibodies to it? The reason I'm asking is my consultant thinks I have... Currently I take 1 100mg injection monthly.. Last month(week before injection was due) had awful heartburn ( highly unusual) next day fine Til bed time when I burped up 3 mouthfuls of blood.. Of course rang ibd nurse next day she said will talk to team and get back to me , but didn't. Took my injection when due and instead of feeling better within 5 days COULDNT get out of bed(IMMENSE back pain,left knee and hip pain)... It was bank holiday weekend so struggled to gp his answer was to take more solpodeine and go hospital the following Tuesday when clinic is on. So got there, file wasn't handy as wasn't my appointment day, so went through my history with doctor.. Then consultant came in and said he thought id developed antibodies to simponi questioning if I should stop it( I'm allergic to humira as well)so bloods were ordered, X-rays of effected joints, calprotectin and cdiff investigations and given prescription for short term predict starting on 30mg and tapering.. TIL results come back(on day 3 at the min, bad calf pains and left side still as bad) spoke to ibd nurse yesterday and she said bloods looked ok but simponi may be keeping crp down and calprotectin will tell more.BUT the strange thing is she said they were talking about UPPING the simponi NOT stopping it???? VERY strange....also was asked had I a fever., Blurred vision,etc .. I think they might think it's lupus.. But didn't actually say... But I've asked them twice before to test me for it.. Cos I HAVE the butterfly rash and have had it for years.. Had pneumonia twice and 2 collapsed lungs and all over body rash( that had to be covered in bandages) would be glad of any advice anyone has... Sorry so LOND winded

 

[Maya142]

You can definitely develop antibodies to Simponi. It could also be Drug induced Lupus - especially given the butterfly rash. Usually they will do blood work for that - anti-histone antibodies, ANA, anti-dsDNA etc. My daughter got drug induced Lupus with Entyvio and she was MISERABLE - extreme fatigue, horrible joint pain, butterfly rash - it was AWFUL. They stopped Entyvio immediately and it took about 2-3 months before she felt better.

It sounds like they are thinking your symptoms are Crohn's related, which is why they are upping the Simponi. I would ask the doc about both possibilities - it being Crohn's related or if it could drug induced Lupus.

If it is Crohn's, then upping the dose might help. Sometimes increasing the dose does actually help when you have antibodies. So does adding something like MTX.

Good luck!!

 

[Toni68]

Thanks sooo much for reply... It's gas how you can often get more info here than at the hospital.... Hopefully the results I'm waiting for will be conclusive of something... So sick of well being sick grrrr

 

[Toni68]

Hi everyone... just got results of all tests and am baffled.... bloods fine, calprotectin & cdiff.. fine... X-rays .. didn't show anything untoward happening.. yes wear and tear is obviously still there but no worse.... ibd nurse believes it must have been a virus????.. asked if I had flu like symptoms etc before I got really bad... but the answer is no.... coincidence pred has worked??! NEVER had a virus that left me so bad I couldn't do the simplest thing unaided... any clues anyone as to what kind of virus it could've been? Or maybe it's just that cos I'm in simponi that symptoms were so bad?