Young Adult with Crohn's

[PokerFace]

Hey everyone. My name is Evan and I was diagnosed with Crohn's disease when I was 18 (3 years ago). I always try to look up posts about issues I am having so I thought it was about time I join a forum. This is kind of a long post but I hope some people out there have had similar experiences as me! If you'd rather not read I have some questions at the bottom that I've been dying to ask.

When I was first diagnosed my symptoms were pretty horrible. I lost an insane amount of weight (205-160 in a few months) and had very bad abdominal pains. Every time I ate anything, about 10 minutes later I would get incredibly sharp stomach pains that would keep me over and would last maybe a minute then go away completely. They would also happen throughout the day.

After a colonoscopy and a second and third opinion I was told that I have a "mild" case of Crohn's disease. Til this day I am not convinced it is Crohn's since I do not have many of the symptoms and as one of the doctor's told me, Crohn's has become a blanked diagnoses for a variety of currently unknown intestinal inflammation-causing diseases. However, until I know better, Crohn's it is!

At first I was given a blast of two different anti-biotics and 4000mg of Pentasa daily, along with vitamins. I remember about 17 pills a day which was rough for me. I guess it worked since that pain has subsided and luckily has not been as bad as it was. I was told to stay only on Pentasa, vitamins, and optionally probiotics indefinitely to keep the CD at bay. For a while I did that but recently (last year or so) I have found it mentally difficult to take my medication. To be honest, I don't know if it makes a difference with my abdominal pain and I would almost rather have the pain once in a while than take the medication.

Swallowing the 8 or so pills a day is not a big deal for me, but every time I look at them it reminds me of the permanence of the disease and when I don't take them I sort of forget I have it. I am much luckier than most, I only have abdominal pain sporadically throughout the day and I have never had a problem with going to the bathroom often (in fact, I wish I did!) but the biggest problem for me has been muscle pains.

I went to an RA and got prescribed some pills with the explicit instructions to stop taking them if I experience adverse reactions and low-and-behold the day I took it I felt pretty bad and had a rather unpleasant bathroom experience.

I wake up with pain all over my body that feels like arthritis, mainly in my shoulders and hands. The pain will sometimes go away later in the day and is ALWAYS very bad when I wake up.

I am actually overweight right now (175lbs, 5'10" but it is not muscle) and have been on a pretty strict diet of veggies, meat (mostly chicken), beans, and some grains and staying away from all wheat products and most milk products. This is definitely making me feel better and I have been losing a few pounds a week but I don't think it is making a difference with respect to my CD. The biggest problem for me right now is that I REALLY want to get in good shape and I have access to a gym but my out-of-shape-ness and Crohn's muscle pains are really getting in the way of it. I want to do things like pushups but my shoulder becomes excruciatingly painful after just a few. Even at my weakest I can do 20-30 pushups at once as long as the muscle pain isn't there.

I have a few questions for those who have made it this far...
First, for those who have been diagnosed for a long time now, has it gotten worse? What can slow that process down/make it faster? I am very worried that I will live my life and one day my world will fall apart with hospital visits and all of the typical Crohn's side effects.

The second question is about pain and working out. Have you guys tried any non-extreme methods of pain relief? I have an Aloe Vera plant and when I drink some blended up Aloe from inside the leaves I feel better for a little while but I am hoping there is an easer way to solve this. I would also like to hear some fitness tips maybe about ways to get myself through the pain and work out anyway. I can take something like Celebrex to fight the muscle inflammation but I don't think that is a long-term fix

Thank you everyone, I hope to have a good stay here!

 

[alex_chris]

Hey Evan, welcome to the club (just kidding...), your story reminds me a lot about my own. I'll just comment on some parts of your post here and answer your two questions if that is alright.

When I was first diagnosed my symptoms were pretty horrible. I lost an insane amount of weight (205-160 in a few months) and had very bad abdominal pains. Every time I ate anything, about 10 minutes later I would get incredibly sharp stomach pains that would keep me over and would last maybe a minute then go away completely. They would also happen throughout the day.

The weight loss was the same for me back when I was first diagnosed at 18 (I am 32 now), but it was more gradual over 1-2 years I'd say. I was 160lbs and went down to just 120lbs for quite some time at the beginning of having Crohn's. It wasn't as bad as you are describing it with pains after everything I ate tough...

After a colonoscopy and a second and third opinion I was told that I have a "mild" case of Crohn's disease. Til this day I am not convinced it is Crohn's since I do not have many of the symptoms and as one of the doctor's told me, Crohn's has become a blanked diagnoses for a variety of currently unknown intestinal inflammation-causing diseases. However, until I know better, Crohn's it is!

As you say later in your post, Crohn's is a blanked diagnosis for "inflammation in certain part of your smaller intestine and/or colon, but well it's not UC"... does it really matter if you call it Crohn's or not? If there is inflammation and it stays and it is not just located at your colon (UC), we call it Crohn's - which "sub-form" it is, doesn't really matter, what treatment works varies from patient to patient anyway, but no matter what, any inflammation can be fought with certain drugs, so as you say "Crohn's it is".

Re, you do not have "many of the symptoms", what do you mean? If you got pain and inflammation, that's a symptom. There are so many different things that can come from an inflammed intestine, it doesn't mean much if you haven't have them... or even if you have a lot of them, if you ain't got any inflammation ;-).

At first I was given a blast of two different anti-biotics and 4000mg of Pentasa daily, along with vitamins. I remember about 17 pills a day which was rough for me. I guess it worked since that pain has subsided and luckily has not been as bad as it was. I was told to stay only on Pentasa, vitamins, and optionally probiotics indefinitely to keep the CD at bay. For a while I did that but recently (last year or so) I have found it mentally difficult to take my medication. To be honest, I don't know if it makes a difference with my abdominal pain and I would almost rather have the pain once in a while than take the medication.

Quite similar treatment I was started on, as I was also diagnosed with "mild" Crohn's. Now here is a very subjective thing to say about Crohn's - there is no mild form. That's my opinion, because the problem I see is that every patient reports his or her symptoms differently to a doc. And, not sure how you do it, but in the first few years I normally said "I am doing fine", which of course wasn't quite true - because I had symptoms and regular pain, but as I was originally told about the "flares" and I never really experienced any "flare up" (still haven't quite figured out after 14 years what docs try to say with "flaring") but rather it's just when I had inflammation in the intestine I got problems, pain, cramps, *gurgelling*, gasing etc.

Anyway, you say you have abdominal pain despite taking Pentasa. Happened to me too. I was on Pentasa for 4 years and it didn't do anything for me. Now, years later I know Pentasa helps only in very select cases (it helps on the superficial layer of inflammation and is more effective for UC than for Crohn's and especially doesn't help much at all if you have Crohn's primarily in your smaller intestine...).

I am actually overweight right now (175lbs, 5'10" but it is not muscle) and have been on a pretty strict diet of veggies, meat (mostly chicken), beans, and some grains and staying away from all wheat products and most milk products. This is definitely making me feel better and I have been losing a few pounds a week but I don't think it is making a difference with respect to my CD. The biggest problem for me right now is that I REALLY want to get in good shape and I have access to a gym but my out-of-shape-ness and Crohn's muscle pains are really getting in the way of it. I want to do things like pushups but my shoulder becomes excruciatingly painful after just a few. Even at my weakest I can do 20-30 pushups at once as long as the muscle pain isn't there.

Ok, I haven't had any Crohn's related muscle pains. But I have a story of many years of being out of shape because of Crohn's. They key for me always was getting my inflammation under control. If I had even occassional pain, diahrrea, problems when eating food etc., I would also end up out-of shape, because either I normally also ended up with some deficiency (normally iron, because of malabsorption) and just not doing enough sport because I got symptoms.

Currently, I am doing sport (1 hour to 90 minutes) 3 to 4 times a week and am in pretty good shape. My experience is that endurance sport really helps to manage Crohn's. Anyway, if you have problems with muscle pain etc. from a few pushups, something isn't right - and if it's Crohn's related (which it probably is), getting the Crohn under control is the first step.

I have a few questions for those who have made it this far...
First, for those who have been diagnosed for a long time now, has it gotten worse? What can slow that process down/make it faster? I am very worried that I will live my life and one day my world will fall apart with hospital visits and all of the typical Crohn's side effects.

Well, four years after my diagnosis (only being on Pentasa for that time...) I had surgery to remove two strictures (which had developed over those first years...). Since then it has been a bit of a rollercoaster. Yep, long-term management of Crohn's isn't easy. You need to find the right drugs, the right diet (e.g. I am not sure how you can eat beans... it's normally a bid no no for Crohn's patients), the right stress relief (for me it's endurance sport), the right way to fight any vitamin or other deficiencies and very importantly you need to find a good GI and also know your stuff when it comes to Crohn's (how it works, what are the standard treatments and why, what you can and shouldn't eat, what other people do or don't, scientific articles etc.).

It'd say right now after 14 years I am probably in the best shape of my life. Even before the onset of my symptoms I hadn't been in such good shape and I'd say I am in deep remission (no symptoms except if I eat something really bad).

Having said that, if I had known many years ago how to manage Crohn's, things would likely have gone better (not sure whether that surgery could have been avoided, but that's in the past anyway).

So, my advice to you would be to think seriously about the standard long-term therapy of Crohn's. Evidently Pentasa isn't working, otherwise you would be in remission without symptoms. That leaves immunosuppresives and/or biologics. Not every GI is up to date on the standard treatment of Crohn's, many are stuck in the 90s and still have the normal reflex of "mild" -> Pentasa, "moderate" -> immunosuppresives and "severe" -> biologics, where severe in their few means the patient can't even move and is in the hospital all the time, moderate means the patient tells them that they are sick every day and things hurt etc. etc. and mild are normally all the male, young guys who say "I am coping". Fact is, if you got symptoms you need effective treatment, immunosuppresives and biologics may have side effects in rare cases, but I take them any time over Crohn's symptoms.

Other than long-term treatment of drugs, you already do what you can do - try to avoid food you know will get you in pain, try to get in shape and do sport, try to avoid vitamin etc. deficiencies (I would ask your GI to test for every single potential deficiency, from iron/ferritin to calcium to vit d3 etc.) just to see if there is something that could be tackled.

The second question is about pain and working out. Have you guys tried any non-extreme methods of pain relief? I have an Aloe Vera plant and when I drink some blended up Aloe from inside the leaves I feel better for a little while but I am hoping there is an easer way to solve this. I would also like to hear some fitness tips maybe about ways to get myself through the pain and work out anyway. I can take something like Celebrex to fight the muscle inflammation but I don't think that is a long-term fix

I have to say, I am not a friend of pain relief. It masks symptoms. And if I am in pain, I also don't do sport - it's as simple as that for me.

However, what does help (similar to your Aloe Vera drink) might be taking baths with eucalyptus oil etc. But now sure how effective that really is.

In any event, sorry for the very long reply, but your story reminded me of my own that much and if someone back in 1999/2000 had told me to get better informed and forget about the whole "you got mild Crohn's but still got reoccurring sympoms" and just go for long-term treatment, I might have gotten Crohn's under control sooner... or I might have just ignored that person (I was pretty stubborn back then, however, I also didn't know much about Crohn's). Anway, look around this forum and the forum wiki, and I would suggest to talk to your GI about trying someting different than Pentasa.

Cheers,
A

 

[PokerFace]

Alex thank you for the reply. When I say that I don't have many of the symptoms I am really referring to the pain. It comes and goes maybe three times a day and it is just a minor pain (maybe I have just gotten used to it?) so it doesn't really bother me. However, you were right about the deficiencies. I know that I have an iron deficiency but I don't know what else. I think the lack of iron could be causing my muscle problems.

I think I should give Pentasa another try...I don't really take it too often and I've heard it can take up to two months of constant use before taking effect. I also have not had a colonoscopy since my diagnosis so I should probably get one of those...

The "out of shape" cycle sucks and that's what has been killing me. I am too out of shape to easily work out, and without working out I will never be in shape :ybatty: For those with iron deficiencies, do you just take supplements or is there something else I can do?

 

[alex_chris]

Next to oral supplements, you can ask your GI about iron injections (as an iv injection) or iron infusions. If oral supplements don't work they will get your iron levels up significantly, although it will only last for a few months until you need the next set of injections or infusion, if you got a chronic iron absorption problem.