Crohns disease: perianal (fistula) and small intestine; advice on 6-MP and Infliximab?

[Camjames]

Hi,

I have recently (after 4 years of symptoms) been diagnosed with Crohns disease. The past 4 years I had issues around the perianal area only, which was the reason for misdiagnoses, as the doctors thought I had a bad case of hemorrhoids (skin tags that became infected, bleeding, pain).

In early 2017 I had a colonoscopy to ease my paranoia about bowel cancer (due to bleeding from my anus following bowel movements) and the doctor noticed some inflammation of the small intestine. A biopsy came back negative for Crohns and since my symptoms were sporadic he cleared me on the condition that I monitor it.

Mid 2017 I went to Vietnam and fell violently ill after the third day. I came down with a serious lung and intestinal infection and had to fly home (Australia). For the next month I had diarrhea daily and my doctors tested me for foreign bacteria and the likes, which came back negative. I broached IBS to them and they dismissed that idea.

Around the end of 2017, after the daily diarrhea subsided, I was having sporadic bowel movements that were very "unhealthy" looking (pale, dark, smelly, mucusey, loose) and eventually formed an abscess that became a fistula. Following a procedure with my original colonoscopy doctor to insert a seton I began a series of tests in January and February of 2018. The seton helped with the fistula, however the series of tests finally confirmed that I have Crohns disease.

Yesterday I was prescribed 6-MP 50mg daily (which I get tomorrow) and will soon be going on Infliximab. I have researched some of the side effects of 6-MP and Infliximab and am quite scared to start this treatment.

If anyone would like to share their experiences using these drugs and whether or not it worked please go ahead, I would love some encouragement as I know not taking these will only prolong the inevitable.

Thanks

Cameron

 

[Max's Mom]

Sorry to hear that you have been diagnosed with Crohn's, but now when you know what you have ,it will be easier to treat. For us, 6-mp and pentasa didn't help at all. Remicade works quick and does a good job for lots of people,especially with perianal disease .For us, Humira was not as effective,still did an ok job. Entyvio did nothing,our doctor does not have a single patient where Entyvio helped at all,just being honest here. Good luck and know you're not alone.

 

[ronroush7]

I have been on imuran for years which is similar to 6 mp i believe. I hope these medicines can give you sime relief.

 

[Lisa]

I was on 6mp when I started Remicade over 12 years ago...I eventually stopped the 6mp, and have continued on Remicade. This took care of my multiple fistulae, and I haven't had anything serious enough come up to make me stop taking Remicade...in fact, overall I'm the 'healthiest' one in my family!!

 

[Scipio]

Yesterday I was prescribed 6-MP 50mg daily (which I get tomorrow) and will soon be going on Infliximab. I have researched some of the side effects of 6-MP and Infliximab and am quite scared to start this treatment.

The risk to your health from side effects from Crohn's medications is real but small and manageable The risk to your health from uncontrolled Crohn's disease is real and huge and eventually gets way out of control.

 

[Camjames]

Thanks everyone for the response. Appreciate it. Yes, I will definitely start the treatment as soon as I get the medication.

It is nice to know I am not alone, and judging by the other threads on this forum I have minor Crohns symptoms in comparison to others who are doing it tough and who appear to be battling along quite fine with their medication.

Thanks again,

Cameron