Community Forum

I’m a 46-year old male who has suffered with severe Crohn’s disease for about 2 years.  

Since my early 20s, I have suffered from what was diagnosed at that time as IBS and frequent constipation.  In hindsight, that earlier diagnosis was probably Crohn’s as well, just not as advanced.  I started to have symptoms that led to a Crohn’s diagnosis in March of 2022.  I wasn’t properly diagnosed until February 2023.  It took almost 1 year to get a proper Crohn's diagnosis, because the symptoms were not consistent with Crohn’s.  

At first, I had trouble breathing with lots of phlegm and mucous, lack of energy, and spotty fever.  These symptoms dominated for  the next 5 months.  I got x-rays and ruled out COPD, chronic bronchitis, and other lung-related issues.  While still suffering with breathing issues, I began having intense nausea (typically a short while after eating).  This persisted thru the fall months and by November, the focus began to shift to the possibility that I had a GI-related ulcer or stomach problem.  I was put on Omeprazole then Prednisone to treat these ulcer-like symptoms.  Both medications seemed to help initially, but over time both became ineffective.  

On November 1st, I had terrible diarrhea that lasted  days.  I developed what were erroneously diagnosed as bad hemorrhoids (turned out to be anal fissures).  I first saw a GI doctor in November, but they didn’t look “down there” so the misdiagnosis persisted for several months.  It was another 3 months before I was able to schedule a colonoscopy.  At that point,  my fissure was intensely painful and I was bleeding profusely with every bowel movement.  By some miracle, my breathing issues had resolved themselves,  leaving the “hemorrhoids” as my main issue.  I had other symptoms (upset stomach, fatigue, etc.) but I had lived with these symptoms for over 24 years and at this point don’t know what it’s like NOT to live without them.   Anyways, when the colonoscopy was performed, the diagnosis of Crohn’s and anal fissure was made.  

Another 2 months passed and I finally was put on Avsola.  The 24 hours after my first infusion, I felt much better.  I think I even had a pain-free bowel movement!  But after 24 hours, I returned to my current state - weak with intense pain following bowel movements that lasts 6-8 hours (sometimes with intense nausea).  I tried everything to heal the fissure(s) but to no avail (ointments, sitz bathes, soft-food diets, all did nothing).  Just a week ago, some blood work was done and the discovery was made that my body is building up  a resistance to Avsola already.   The plan moving forward is to try to increase the Avsola infusions, but my gut tells me (figuratively speaking) that this will not work.  So my questions for everyone out there is:

1) Avsola and similar biologics have a 60% success rate… Is there something I can do to increase my chances of remission?
2) I “came down” with Crohn's in my mid-40s.  All the research I’ve seen points to this being a disease that very young and very old people get; I suspect getting a Covid vaccination in the summer of 2021 may have kickstarted my current condition.  What are your thoughts?
3)  I hear a lot about people having constant diarrhea and weight loss with Crohn’s.  I do occasionally suffer from diarrhea, but I’ve actually gained a considerable amount of weight since my diagnosis (roughly 15-20 pounds).  How, exactly, do people lose weight with Crohn’s?
4) What to do about the pain (post-bowel movement)?  Tylenol does NOTHING.

Reply posted for NotFun.

Hi, I am sorry your diagnosis journey took so long. I also have had similar respitory symptoms with lots of mucus. I am not familiar with that specific biologic, but if you are concerned about that one not working, talk to your doctor about other medicaitons. There are lots of medications availble now so finding the one that is right for you can take time, but there will be one that works for you. 

I do have friends that struggle with weight gain and not weight loss with their Crohn's, espcially if they have used predinisone. Everyone has a different experience with these diseases and since your disease seems to be throughout your GI tract and not just focused in one area, I am not surprised your expereince does not match what you may see online as typical. I hope you are able to find something that works for you, good luck!

Reply posted for NotFun.

I'm sorry to hear about your journey. I personally have had similar symptoms in my 20s of chronic constipation and seeing many doctors about that bute wasn't officially diagnosed with Crohn's until I was 32 so I can understand what it's like to be somewhat middle-aged, and get this diagnosis. It wasn't until after I was diagnosed with Crohn's that I really started getting the more common chronic diarrhea and more typical symptoms. I'm not sure what kind of pain you're experiencing but definitely talk to your doctor about specifics because they might be able to recommend things like sitz baths or similar at home remedies. I'm not familiar with the medication you're on or the chances of remission, but your doctor can certainly dive deeper into that with you - don't be afraid to ask the questions. Sometimes I find it handy to write the questions down as they come up and then I can bring them all into my next appointment because I know what it's like sitting in the office and everything flies out your head.