Mild/low-symptom Crohns takes a toll - Observations

[brooklyn23]

This came from a conversation I had with Cat-A-Tonic, but I wanted to touch on something I noticed.

I've been back on Pentasa for about 3 weeks now, and on top of less pain and fatigue, I've noticed something else. My cardiovascular health is better than it was in the years I was not taking Pentasa.

The first time I was on Pentasa, I was in the best shape of my life. I mean, lowest body fat percentage, doing P90X, confident in a bathing suit. I didn't have many symptoms of Crohns when I was diagnosed, it feels like it was almost an incidental finding, to the point where I decided to stop taking the pentasa, and start taking the pill to just deal with what caused the worst of my pain which was ovulation.

What if my weight gain and loss of energy was not from the pill? What if it was because I was off the Pentasa? The Pentasa clearly had a beneficial effect on my overall health. Perhaps even if I wasn't blatantly symptomatic, I was still struggling, and that had the negative impact on my cardiovascular health.

I mean, I ran for 16 minutes and never hit peak cardio once. I felt like I could run forever. And that was after only 3 cardio workouts after I hadn't been active for months!

 

[24601]

Really glad you are doing well! Even though I don't think I know much from personal experience about mild/moderate Crohn's, I think this is a really interesting discussion and I think it relates also to how with a longterm illness we can sort of get used to symptoms and/or also come to expect them and accept them and it can be hard to recognize just how much impact they are having on our life and what normal felt like.

Being able to recognize the effect even milder symptoms are having on our lives can I believe be really helpful in knowing when to seek more help and/or investigations.

I recognize too, as I think quite a few female Crohn's patients do, the exacerbation of symptoms by our menstrual cycles and the inclination to try and deal with those exacerbations first - only to find that the issue we most need to deal with is the state of the underlying disease.

 

[brooklyn23]

Sometimes I feel strange being here and talking about my condition when others clearly struggle much harder than I do, but it was a bizarre observation. Because I'm still having some lesser abdominal pain while everything else seems to be getting better.

 

[24601]

I think that what you are describing is something universal to all of us - that we don't realize all the way Crohn's affects us because we're like that so much of the time and it's only when we get relatively healthy (which so many of us struggle to achieve) that we understand how it has been making a difference to so many things.

 

[Crohns08]

I wouldn't advise going off of medication. As much as I am an advocate for diet because it has helped my family and I so much, one regret I have is that when I was a few years younger and in denial of my disease I went off my meds because I was feeling good and in the end I ate a lot of sugar and inflammatory things and my crohn's went from mild to severe and required biologics and steroids.

 

[brooklyn23]

I'm back on Pentasa now, and have no plans to come off. I was a rather immature 22 year old when this whole thing started and was all "pout pout I don't have the answers and I don't like 8 pills a day" ... my doc was very unhappy that I stopped taking it.

Although, like my sig says, my most recent scopes were equivocal at best. No ulcers, just a few reddish spots. But I was symptomatic.

 

[Cat-a-Tonic]

Hey Brooklyn, just wanted to let you know that I've moved this thread to General (Your Story is mainly for introductions). Don't worry, you did nothing wrong. This thread just fits in this section better.

I guess my IBD is mild as well - I'm still not fully diagnosed, they can't seem to figure out which type of IBD I have. My GI has for years been leaning towards microscopic colitis (that would explain why they don't see anything on scope, but they haven't yet been able to find it on biopsy either - microscopic colitis is tricky though, they basically have to luck into biopsying the right spot since it has a skip pattern AND it's microscopic so visually all looks normal). And yeah, for the most part I've been okay just being on a mesalamine formulation (first Asacol, now Lialda) and no other IBD meds. But I do need to be on mesalamine or I will flare up, as I learned the hard way when they stopped making Asacol and I struggled for awhile to find another med that worked as well for me. I'm still waiting to see for sure how Lialda treats me when I've got no other issues going on - I had labyrinthitis, then the flu, and now rectal bleeding which is hopefully just from really bad hemorrhoids. Once I've got no other stuff going on, then I'll be able to get a good baseline of how Lialda treats me when there's nothing else interfering with my overall health. I'm pretty sure it's on par with what Asacol did for me. So yeah, for mild IBD, mesalamine by itself can work wonders.

But yes, even mild IBD definitely takes a toll. I lost 20ish lbs the first year I was sick. I was extremely pale all the time. I was very depressed and cried quite often. During one of my worst flares, I counted approximately 35 bathroom trips in 24 hours (I got sort of delirious around bathroom trip #30 so I lost count, but I went about 5-6 more times after that so I'm confident that the number is right around 35). I had to go get IV fluids multiple times. This all started in 2009. And yet, my IBD is still so mild (?) that they still can't seem to pin it down. I guess it's a good thing that it's still so mild 5+ years in and it's definitely a good thing that I still don't need anything stronger than steroids for a flare and mesalamine for maintenance. Yes, it still takes a toll on both my mental and physical well-being. Even when I was in remission, I still had to be mindful of what I was eating, how much exercise I was getting, how stressed I was, how much sleep I was getting, etc. Even mild chronic illness is still chronic illness, and it takes a toll even if you're not completely miserable.