Greetings all,
I've recently started lurking around the forum and have decided to join as it appears to be a terrific community.
My name is Michael, I'm 25 and have been managing Crohn's for about 7 or 8 years now. And after reading some of the posts here in the past little while, I realize that while I do struggle - sometimes considerably - with it, I'm quite lucky to not have it so much worse. My heart really goes out to some of these stories here, it's really a tragedy that this can usurp the lives of so many...
My story basically goes something like this...
When I was 17 or 18, I was living a pretty normal life as far as kids that age go...however, at around this time, at seemingly random times, I would fall ill. Very ill. Vomiting, diarrhea, the whole bit. It would last a day and go away. It was very odd, and happened quite a bit more than one would expect...sure, you "catch a bug" here and there or eat something funny...but for me, it was quite literally, at random. No food correlation, no activity correlation, no nothing.
As this got worse and worse, there was one night where I was experiencing these symptoms quite badly. A veritable all-nighter. Though, it felt like I couldn't go but had to. Some of you, undoubtedly know this feeling. I'm really struggling with what feels like constipation. I'm taking laxatives, enemas, hot baths, the whole deal. And I still have that same feeling.
Doctor.
They recommend some medicine to make me go and just before I leave, they recommend some sort of test (I forget exactly, probably like a barium x-ray or something) because the doctor just thought something wasn't quite right.
He recommended I go to the hospital and get it checked out post haste. So I did - though, not a fan of doctors or hospitals, I said I'd rather try the medicine first. My pleas were rightly rejected.
Turns out there was nothing in my intestines at all, but that they were swollen. Severely. I think the person doing the bloodwork said something like, "the normal range for X is 1-15, with 15 being pretty swollen..." - "what's my number? 13?" - "82."
So, they gave me some medicine to reduce the swelling and recommended a G.I.
A series of medical tests, hospital visits and just out and out misery...they come back with "99% sure it's Crohn's"
Chronic diarrhea, fatigue, general discomfort. We all know the story. I'm on 21 pills a day, Pentasa for many years, a series of steroids to off-set symptoms as they spiked and receded...for someone that had never had to swallow pills whole before, Pentasa sure was a trial by fire. I could barely lift those things, much less swallow them whole...
I go off to college, symptoms are still pretty bad. I can live my life, but altered certainly.
I keep having issues. Remicade gets brought into the mix. I had a surgery to remove a significant abscess and a small piece of intestine. And eventually, I weaned myself off of Pentasa - unsure that the pills were reaching their intended destination...which is way down the pathway according to doctors.
Did very well after remicade and surgery for a little bit. Was going relatively symptom free for a little bit in there and I was loving it. As you can imagine. Especially given that I was up at college.
So, now I'm around 21 or so. And I notice that I'm having some trouble with bm's...thinking it was dietary, I got some fiber going and other adjustments, but the problem worsened...
3 days, 4...a week...doctors at school and G.I. are puzzled. Series of x-rays and other tests...
I get a perscription for Miralax (or its generic form). Breakthrough! After 11 days! Wow, what a relief...
Ok, so that becomes a norm. Miralax, every other day or so, to manage what's going on. I can tolerate that. It's a strange medicine, in that, you (well, I) have to balance it with both what you eat and how much you eat. It's not like a "take 2 pills, call me in the morning..." deal. It's dependent on your habits. So, trial and error...too little yields constipation; too much yields diarrhea. Got it.
Eventually, it gets boosted to every day I take it...but fine. I'm living my life fairly comfortably. Only hiccups now and again, nothing debilitating...I'm quite fortunate, I realize, all things considered.
That way of life lasts a few years until just recently.
I move down to Philadelphia and after years of eating out all the time (quite literally, every meal basically, and not good food either...fast food sometimes, pizza shops a lot, subs, etc....) or school dining hall food...I'm finally able to go shopping...
I switch up my diet, getting Whole Foods (organic/healthy stuff) involved. I'm feeling good. I'm cooking my own meals, I'm eating healthy.
However, my chronic constipation has worsened considerably in recent weeks. So, I resumed a food diary, started eliminating possible problems...rice, cheese, tap water, etc.
Still major problems. Having to resort to the nuclear option several times in the last couple weeks (nuclear = magnesium citrate).
So, I scale it back further. Chicken (a staple of my diet for the duration of this) and pasta (its trusty, easily digestable sidekick). Not much else.
But yet again, today, had to nuke it again...3 times in the last two weeks alone. Which can't be good in its own right...
So, I'm struggling with it once more and I'll even admit it could be self-inflicted, I just don't know how to uninflict myself. So I'm seeing if there's anyone like me out there that might have some ideas and similarly, maybe I can offer some helpful advice/support for others in the process.
I look forward to being a member of the community here and sorry for a long first post...I can be long-winded sometimes...
I've recently started lurking around the forum and have decided to join as it appears to be a terrific community.
My name is Michael, I'm 25 and have been managing Crohn's for about 7 or 8 years now. And after reading some of the posts here in the past little while, I realize that while I do struggle - sometimes considerably - with it, I'm quite lucky to not have it so much worse. My heart really goes out to some of these stories here, it's really a tragedy that this can usurp the lives of so many...
My story basically goes something like this...
When I was 17 or 18, I was living a pretty normal life as far as kids that age go...however, at around this time, at seemingly random times, I would fall ill. Very ill. Vomiting, diarrhea, the whole bit. It would last a day and go away. It was very odd, and happened quite a bit more than one would expect...sure, you "catch a bug" here and there or eat something funny...but for me, it was quite literally, at random. No food correlation, no activity correlation, no nothing.
As this got worse and worse, there was one night where I was experiencing these symptoms quite badly. A veritable all-nighter. Though, it felt like I couldn't go but had to. Some of you, undoubtedly know this feeling. I'm really struggling with what feels like constipation. I'm taking laxatives, enemas, hot baths, the whole deal. And I still have that same feeling.
Doctor.
They recommend some medicine to make me go and just before I leave, they recommend some sort of test (I forget exactly, probably like a barium x-ray or something) because the doctor just thought something wasn't quite right.
He recommended I go to the hospital and get it checked out post haste. So I did - though, not a fan of doctors or hospitals, I said I'd rather try the medicine first. My pleas were rightly rejected.
Turns out there was nothing in my intestines at all, but that they were swollen. Severely. I think the person doing the bloodwork said something like, "the normal range for X is 1-15, with 15 being pretty swollen..." - "what's my number? 13?" - "82."
So, they gave me some medicine to reduce the swelling and recommended a G.I.
A series of medical tests, hospital visits and just out and out misery...they come back with "99% sure it's Crohn's"
Chronic diarrhea, fatigue, general discomfort. We all know the story. I'm on 21 pills a day, Pentasa for many years, a series of steroids to off-set symptoms as they spiked and receded...for someone that had never had to swallow pills whole before, Pentasa sure was a trial by fire. I could barely lift those things, much less swallow them whole...
I go off to college, symptoms are still pretty bad. I can live my life, but altered certainly.
I keep having issues. Remicade gets brought into the mix. I had a surgery to remove a significant abscess and a small piece of intestine. And eventually, I weaned myself off of Pentasa - unsure that the pills were reaching their intended destination...which is way down the pathway according to doctors.
Did very well after remicade and surgery for a little bit. Was going relatively symptom free for a little bit in there and I was loving it. As you can imagine. Especially given that I was up at college.
So, now I'm around 21 or so. And I notice that I'm having some trouble with bm's...thinking it was dietary, I got some fiber going and other adjustments, but the problem worsened...
3 days, 4...a week...doctors at school and G.I. are puzzled. Series of x-rays and other tests...
I get a perscription for Miralax (or its generic form). Breakthrough! After 11 days! Wow, what a relief...
Ok, so that becomes a norm. Miralax, every other day or so, to manage what's going on. I can tolerate that. It's a strange medicine, in that, you (well, I) have to balance it with both what you eat and how much you eat. It's not like a "take 2 pills, call me in the morning..." deal. It's dependent on your habits. So, trial and error...too little yields constipation; too much yields diarrhea. Got it.
Eventually, it gets boosted to every day I take it...but fine. I'm living my life fairly comfortably. Only hiccups now and again, nothing debilitating...I'm quite fortunate, I realize, all things considered.
That way of life lasts a few years until just recently.
I move down to Philadelphia and after years of eating out all the time (quite literally, every meal basically, and not good food either...fast food sometimes, pizza shops a lot, subs, etc....) or school dining hall food...I'm finally able to go shopping...
I switch up my diet, getting Whole Foods (organic/healthy stuff) involved. I'm feeling good. I'm cooking my own meals, I'm eating healthy.
However, my chronic constipation has worsened considerably in recent weeks. So, I resumed a food diary, started eliminating possible problems...rice, cheese, tap water, etc.
Still major problems. Having to resort to the nuclear option several times in the last couple weeks (nuclear = magnesium citrate).
So, I scale it back further. Chicken (a staple of my diet for the duration of this) and pasta (its trusty, easily digestable sidekick). Not much else.
But yet again, today, had to nuke it again...3 times in the last two weeks alone. Which can't be good in its own right...
So, I'm struggling with it once more and I'll even admit it could be self-inflicted, I just don't know how to uninflict myself. So I'm seeing if there's anyone like me out there that might have some ideas and similarly, maybe I can offer some helpful advice/support for others in the process.
I look forward to being a member of the community here and sorry for a long first post...I can be long-winded sometimes...
