Does My Crohn's Really Warrant Biologics?

[BlackButterflies]

Hi guys

I consider myself to have mild Crohn's and am afraid of ending up unnecessarily on medications my GI is suggesting (IE Remicade/Humira). Here is my backstory.

:sign0085:
Warning: TMI Ahead

I have been on max dose Pentasa since diagnosis in April 2014. Every 4-6 months I begin passing blood or what I would call blood/mucous jelly beans and end up on Prednisone.
After being good for 5 months, October 2015 the bleeding started again. This time, the jellybeans were joined with large blood and mucous lumps. I made my apt with my GI and waited, as my Primary Doc I found out left the practice and I hadn't known. This progresses to the point where up to 20 times a day I am running to the washroom with urgency just to pass water, blood and 'clots' or let out what I can only describe as blood farts. By December I had increasing pain throughout my stomach, only now I had pain above my belly button too. Christmas night driving home from family I took myself to emerg. I was admitted and informed that the pain is actually due to Pancreatitis and I wouldn't be going anywhere.

The cause of the Pancreatitis was determined to be the Pentasa as they could find absolutely no other reason. I'm not a drinker, I don't eat fatty foods, no stones, no travel.. it goes on and I was tested for everything. After being starved of any food that triggers enzyme release and on IV for two weeks the pancreas pain improved and my lipase levels dropped back within a safe range (wow I didn't realize how bad it had gotten) but that left me with nothing for the Crohn's and bleeding so I was put back on Prednisone. I am still on Prednisone today (two more weeks to wean off - I am going off because every other time a smaller dose for shorter amount of time stops the bleeding and it has had zero effect this time and I want off these hell pills) but the situation is the same concerning the blood and mucous. I am still on mostly liquid/soft food (my pancreas is still trying to heal and wow is it slow). Methotrexate is out of the running due to the risk of pancreatitis with me now, so the GI team is ready to step me up to Remicade or Humira.

I go through the forum and I read about so many of you struggling with so much and having so many terrible symptoms from Crohn's that really need these drugs. I don't think that I do. The bleeding isn't normal, but I can still function. I feel like it's putting a cast on a little scratch for my Crohn's. Would it really be that bad if I left it? Since I am bleeding slowly enough that I am replenishing my stores and bloodwork checks out ok why can't I leave it? If a drug like Pentasa gave me Pancreatitis, looking at the possible side effects of biologics makes me want to run for the hills! I worry that with my luck I will end up worse off than if I had just passively monitored my Crohn's. I ask these questions to doctors but no one wants to give me a straight answer and it leaves me very uncomfortable and unable to make a decision. It's a lot of well it's your body but here are your biologics options... The blood and mucous is my main symptom. I have other symptoms like not fully digesting food, D, bloating and cramping, fatigue, joint pains.. all of this I am managing with a very controlled and limited diet, lots of rest, baths, yoga, meditation, therapy, and I am going back to school to change careers - but none are severe enough that I am missing out on life. On the other hand.. I don't want to leave my Crohn's and end up letting the disease run rampant to where I regret it when I am older - but I can't get acknowledgement that it even will.

Thank you for reading this. I appreciate any thoughts or opinions anyone may have - my goal is to live the best life I can live.

 

[ronroush7]

Hi. Six years ago, I went to the emergency room. I had thrown up about six times. They determined that I had pancreatitis. It was caused because my body had a bad reaction to something in the TPN formula. They had already decided before this that they needed to do a resection on me. I had been on Remicade but took myself off because of the expense. Not being on the Remicade caused more damage to me. I can't say what will happen to you . Each person is different. It might be better not to take a chance. Please keep us updated. Support.

 

[JaimeM]

I will say I loved being on Remicade, I felt great. It's always better to be a little aggressive with crohns from what I've read and what I've experienced. I was diagnosed with crohns in 2008. I started Remicade after 6 months of entocort. I had fairly mild crohns I think. Anyway I was in remission for a very long time.. Had a baby and decided to manage my crohns with diet for awhile so I could breastfeed. Well, I switched to Cimzia bc my lifestyle with a newborn didn't really make it easy for a remicade infusion.. So I ended up getting cdiff for 4 months and now have the worst flare I've ever had.. If I could go back, i never would have come off of the Remicade and i would never have thought I could manage my crohns with diet.

 

[Clash]

You don't need to exhibit symptoms or even have severe inflammation to have active disease permanently damage your bowels.

Simmering inflammation left untreated or under treated can lead to stricturing, obstruction and surgery.

GIs tend toward the top down treatment approach because studies have shown that that the quicker you can achieve and maintain a healthy bowel with complete mucosal healing the the lower the risk of surgery and loss of bowel. Prednisone can dampen inflammation but doesn't not promote mucosal healing.

All of the symptoms you list
Multiple BMs
Blood
Diarrhea
Joint pain
Fatigue
Bloating
Cramping

are indicative of active disease present and negatively affecting your bowel. The complications that this can bring about can scary, not to mention it can increase your chances of bowel cancer.

Write down your questions and concerns and have your GI go over them one by one with you. Noone can tell you the definite course of your disease but numerous studies have shown that even simmering inflammation can lead to serious complications.

 

[Eridon2002]

For a long time I thought I could manage without meds because I could handle my symptoms. Meanwhile damage was still raging in my colon. I now have to have a resection due to the severe stricture. I wouldn't use your ability to manage the symptoms as your litmus test to deciding whether to go on meds. Damage could still be occurring and with this disease things can quickly become worse.

 

[schwooters]

at my last big inflammtion prednisone didnt helped me !
I ended up in the hospital needing 9 units of blood.
i received humira and it saved me from operation.
it always can get worse as long as inflammation is active !

 

[shamrock15]

I had active crohn's for almost 20 years after my diagnosis. The ONLY thing that has ever really done it for me is remicade. I needed imuran to go with it, but nothing else even came close. I have now been on it for 7.5 years and wish I could have been on it sooner. Might have saved me 3 surgeries.

While I understand and accept that some people may want to try to manage their disease without medications, they really do need to fully understand what may happen if they don't have medication. Talk to those with multiple resections (myself), those whose body has been permanently injured (again, myself) but still can lead an almost normal life. Those who don't know I have crohn's wouldn't be able to tell there was anything wrong with me. I am absolutely certain that without remicade my life would be much poorer today, if I would even be here.

 

[Agent99]

I had the same concerns prior to starting Humira, but once I realized what a miracle drug it is, I was very happy that I took the chance. I was on Humira for 5 years and loved feeling better! Unfortunately, I had to go off Humira due to severe sinus issues. I may go back on it once we get the sinus issues under control.

 

[ronroush7]

I had the same concerns prior to starting Humira, but once I realized what a miracle drug it is, I was very happy that I took the chance. I was on Humira for 5 years and loved feeling better! Unfortunately, I had to go off Humira due to severe sinus issues. I may go back on it once we get the sinus issues under control.

If you do go back on it , you may want to ask your doctor to test you for antibodies.

 

[Agent99]

Yes, I've had that test done once and thankfully, it was a good result!

 

[ronroush7]

Great