First-time in the forum! Hoping for your advice

[LaurenAuf]

Hi everyone!
This forum is a GOD-send. I think I've spent a full week looking over your posts and reading your stories before realizing i really need to JOIN this group!
I am a 31 year old Crohn's case but have NO symptoms and feel generally AMAZING. I was diagnosed 10 years ago in college (thought I had a bad chicken caesar salad wrap! haha ) and that first Flare was my one and ONLY since!
I've been on Prednisone and did a short course on 6-MP, (which made my hair fall out) but that was 10 years ago. The past decade i have only been taking my Pentasa, which I credit to keeping my intestines at bay.
Imagine my SHOCK when a recent Pill-Capsule Endoscopy shows major small bowel ulcers dotting my walls. They ulcers are so significant that my GI's are saying to go on Humira immediately! I basically had a nervous breakdown looking at all the research and testimonials of those who lost loved ones or experienced horrific side effects on biologics.
I guess what I'm hoping to hear from you on is... if you were feeling perfectly well, and your blood work showed NO inflammation- would you go on a Biologic?
I am so torn and they told me these ulcers are a "ticking time bomb waiting to perforate" if I don't decide my therapy.
I asked if I could go back on 6-MP (a drug that at least I'm familiar with-) rather than step up to a Biologic but TWO GI's have both informed me that Humira will be the most effective in terms of dealing with these ulcers.
I am SO scared to start injecting myself with a drug that could give me awful side effects- when I currently an a-symptomatic.
I am seeing a third doctor for a THIRD opinion at UCLA thursday- so I am PRAYING he offers another option.
I guess the small bowel ulcers are difficult to treat/heal?
Anyone have advice? Encouragement? I'm at a total LOSS!!

THANK YOU FOR READING THIS.

 

[valleysangel92]

First off, welcome to the forum!

I'm glad to hear that you are feeling so well!

Hmm.. This is something that can be difficult to work out..

Biologics are heavy medications and they can be scary to consider, especially when you feel so well. Many doctors now seem to have the approach of using stronger medication earlier in order to bring the disease under control quicker and thus limiting the damage it can do.

One thing I will say is that the side effects are rare and the majority of people who take these medications do not suffer from the worst side effects.

I cannot tell you what the best thing for you to do is, I can only tell you what I think.

Remember that crohns is tricky and sneaky and it's possible for things to get very nasty with little or no warning, and that no matter how bad the meds seem, undertreated crohns can be just as bad and often worse.

If you really don't want to try biologics then you could see if your GI would allow you to try an immunosuppresant such as azathioprone (because you mentioned hair loss with 6mp) for an agreed period and if it doesn't have the desired effect then you could agree to try biologics at that stage?

If you have any other questions just let us know, and if nothing else we will always offer you our support. We can all understand what this is like and we understand your fears.

 

[LaurenAuf]

Hi valleysangel92!

Thank you for your response! I have tears in my eyes just feelings grateful that somebody read my post and took the time for a thoughtful, insightful reply!
Thank YOU!!
I totally could not agree more! I am BEGGING my GI's to agree to a 4 month course of azathioprine to see if at least it HELPS HEAL the ulcers and then we can take it from there.
I am just a nervous wreck that every time i stretch i am going to perforate and be a goner!
I really appreciate your insight and it feels amazing to be a part of this group and know there are people out there who are also on the same page as me!!!
THANKS!!
xoxoxo

 

[Axelfl3333]

Welcome to the club no one wants to join!if you,ve been reading the forum you,ll have seen lots of warnings about dr google,he never delivers good news!its good to be informed but you must remember many people go on these powerful meds with no problems,good news is no news and most with good results don,t go on forums,you,ve got to remember these drugs are designed to help and it's far better to go on a course of these and have regular check ups than for you to get really ill with all the possibly bad effects of crohns.all the best good luck
P.s I,d go with your drs.

 

[valleysangel92]

I'm so glad I could help!! I really understand how you feel, I'm currently not on maintanence medication at the moment myself an every time I get stomach pain I get worried. The GI I've been seeing isn't and IBD specialist and insists I don't need meds, I'll be seeing my crohns specialist soon so I'm sure he'll help me work it out. So I totally get what you're saying

If your GI won't agree to it then get them to discuss why, and have an open discussion about your concerns. Have a list of what you want cleared up ready and make sure they answer you. It's your body after all. Honestly though, a lot of people here have used biologics and found that they have been very useful . You'd also be closely monitored for any problems just incase.

I'm so glad we are helping you . If you feel the need to chat anytime then just go ahead and drop me a message and I'll be happy to help xxxx

 

[valleysangel92]

Oh and I agree totally with Axel about Dr Google, he's full of disproportionate information.. Remember that people who are struggling will make more noise than people who aren't, because the ones that are struggling need help and the ones that are doing well are enjoying life .

 

[nikimazur]

I went from being trying the 5ASAs (Pentasa/Lialda/Asacol HD) then added in Entocort, followed by prednisone then jumped right to Humira. I had to stop the Humira due to liver issues, and have started azathioprine and prednisone. My personal experience, is that I had way fewer side effects with Humira, compared to azathioprine/ prednsione. Though it is kind of scary, the side effects are just as serious as those of azathiorprine/6-mp. I noticed much more improvement on Humira, and am suffering now on the prednisone combo. I definitely think biologics are worth a try! More doctors are preferring to go right to the biologics, for the side effects are similar if not lesser than with immunomodulators. I have only been on azathioprine three weeks and have lost a decent amount of my hair, have prednisone induced insomnia, acne, and have come down with a sinus infection.... From personal experience I would take the biologic any day over the immunomodulators!

 

[LaurenAuf]

Hey Niki!

Wow, that is SO interesting to hear! I really appreciate your POV.
I guess you are right that the preference now is to hop on the Biologics and not just put a band-aid on it with the 6-MP/Imuran.
I am SO torn i have honestly lost sleep over that-- and today the doctors are calling asking what I have decided and want me to pick SOON.
One even suggested I enter a Clinical Trial of Cimzia and that it would be free. Umm, sorry, no thanks. I feel like I have a price tag on my head-- or should I say GUT!


Basically, my options to treat the small bowel are:
1) Humira (suggested as the #1 pick my 2 GI's)
2) Remicade
3) negotiate my way to a trial 6 month run of 6-MP or Imuran to see if that heals the ulcers and we get some progress. (doctors will give into this, but don't endorse it)

I guess taking your story into consideration, the Biologics make more sense seeing as you are right that ALL carry their own scary side effects.
The T-cell lymphoma really is what churns my gut over picking Humira. I know they say it's 1 in 10,000, but isn't that like...
NOT COMFORTING ODDS???

Thank you for your reply and for reading my story!!! I LOVE This forum!!!
It's honestly given me the most peace of mind I have had in weeks.

 

[nikimazur]

Also, forgot to add.. I personally preferred the ease of injection Humira at home, rather than to try to plan for the Remicade infusions, and have to worry about time off from work and whatnot. You also technically have a higher risk of getting cancer (melanoma and the various skin cancers) from 6mp/ azathioprine as well. It is a tough decision, and worth getting the 3rd opinion. We are fortunate though, that we have choices in our treatment and have a say of what goes in..

 

[Farmwife]

Hi and welcome aboard.
Sorry you find yourself in this dilemma.
My dear five year old Grace is the reason I'm on this forum.
She's on humira, methotrexate and she's done rounds of prednisone.
I researched all lot and found what this disease can do over time if it's not treated right will cause more damage than the side effects possible could.
That doesn't mean it's an easy thing to give the love of my life (one of them)
But I do it in hope of a healthier future for her.
All the scarier side effect, I leave that worry in God's hands.


Keep us posted.:hug:

 

[habbymomma]

My son had no real symptoms until the night before we went to the ER thinking he had appendicitis. He had a abscess and perforations and ended up in surgery after two+ weeks in the hospital on TPN.

It scares me that Crohn's can creep up that way, without you knowing. That is why we agreed to put him on Remicade.

Best wishes to you whatever you decide to do!