Hello, I'm concerned

Well, I'm new here. Here's my story. I'm a male, 6'1" and now 21 years old.

In July 2003 I was admitted to a local hospital with pain in my lower right side, mild fever and night sweats. It had started out as a dull sensation a few days earlier but it was a constant burning pain by the time I was admitted. I was in the hospital for 3 or 4 days and during that time they noticed that my white count was mildly elevated, they referred me to a GI in Houston, TX.

The next couple months were very rough and I started losing a lot of weight. I had blood in my stool, diarrhea, weakness, and pain in the same area. I also developed an anal skin tag which was very uncomfortable. I had an upper endoscopy and colonoscopy which found inflammation in my esophagus, stomach and colon. On Sept. 10 2003, at 17, I was diagnosed with Crohn's. Thank God for the relatively quick diagnosis. I was initially put on prednisone 60 mg/day and imuran 125 mg/day. Well this only mildly improved my symptoms and by late October I was in the hospital again (in Houston this time). My weight had gone from 205 to 155 lbs during these few months and I was exhausted on top of everything else. They did an upper GI series to check for narrowing of my small intestine (came back good) and I was given remicade this time and it put me into remission.

During the months that followed I was able to put back on some of the weight I had lost and was up to 170 lbs in about 18 months. 2005 was a good year with minimal symptoms and generally feeling very good. I've only had minor flare-ups in the past couple years while on remicade. I stopped the pred soon after I got out of the hospital.

Well, I switched to humira injections about 8 months ago for convenience. In the last week of June this year I started having trouble with bloating and stomach pains. The doctor put me on entocort 3 mg 3x daily and ordered an upper endoscopy. He did the endoscopy 2 weeks ago and said that it looked decent and I have a follow up appointment this Wednesday. However, even though I'm on humira, imruan and entocort I've been losing weight again. I've lost about 8 lbs in 6 weeks and I'm down to 164 lbs now. I've had a decreased appetite, still having stomach pains and bloating, and generally feeling poorly. I'm just a little concerned about this I guess.

Hi ronyan.. Welcome to the forum. Congrats on the speedy diagnosis. It really helps to know what you're dealing with. I'm relatively new to this myself.. ill for a few years before a diagnosis was made... and even it is tentative.. As for the ups/downs of this illness... I wish I could offer something spiritual and uplifting.. some advice for coping.. I can't. The roller coaster ride of it JUST is... worrying about it wont' help. Its the best I can offer... What will be, will be. fight the good fight, see your doctors, go with the best advice, practices, meds, routines, etc.. and enjoy your good days/times as much as possible.. that's what I try to do, OK?

Sorry I forgot to give my real name, it's Ryan. I appreciate your thoughts Kev, worry and anxiety are things I struggle with. I know it can only hurt my situation but it's hard for me not to worry about it when I'm not doing well.

Hi again Ryan... Yeah, trying to stop worrying seems to have just the opposite effect
Just a quirk of our brain pattern.. As for me, I have those days/nites too. Taking my mind off it CAN be a challenge. So I force myself to do something. Like, if my body permits, I go out with friends... I can still socialize, even if I can't eat or drink what they do.. And generally, the subject of my health isn't a topic of conversation that I bring up or discuss... It isn't taboo, I just give very short answers, usually jokes, if it is raised, then quickly change the subject. Works best for everyone, me included. I also DO things around the house to take my mind off my worries. Like, I always wanted to write. Between work and family, just never found the time. Now I force myself to find the time.. written some stuff, may even get some published.. I also do/start home projects... work on them when my illness permits, leave em when I have to. Remodelled the bathroom, just finished the kitchen. Get a great feeling of accomplishment... AND, you know what they say about idle hands. Truth is... finding things to do won't make my illness any better.. but it does help avoid those nasty thoughts and fears that creep into one's day to day life that REALLY don't help, AND even if no one can prove they hurt, can't possibly do any good. It isn't rocket science, or medical science. Just a simple coping strategy that does the trick for me... you have to 'WORK' it for it to work, and not analyze it too closely...

That's good advice Kev, there are more things I could be doing around the house.

Well today's my follow-up so I'm wondering what the doctor is gonna want to do to me next. :lol:

Well, I went to see the doc and my weight is down 10 lbs in a month. He wants to put me back on Remicade and hopefully that will help.

I'm having burning abdominal pain on my lower right side that is getting worse, pain in my middle abdominal area, low energy, and weight loss. What most concerns me right now is my weight, I think I've been eating enough but I keep losing pounds.

Anybody else struggle a lot with weight loss?

Hi ronyan/ryan,

Weight loss is a somewhat common symptom. Since you are eating normally (whatever is normal for you) then the weight loss is likely due to malabsorption. This means your intestines are not able to absorb everything they should be. If this is the case then hopefully the medication you are on allows the intestine to heal and for your diseaese to go into remission. Otherwise it may help to eat more calories if possible, which may give your body the ability to absorb more calories. I am not too sure if this is really helpful though, but at the very least look to increase the amount of calories you intake each day (like by drinking a fruit juice instead of water perhaps).

Well, my weight has leveled off for 2 weeks now, but I'm still in pain (especially after meals). It's weird, this doesn't really feel like a typical flare to me, I'm having pain in my upper and occasionally mid abdomen area. I haven't had much pain in this location in the past (other than heartburn) or this kind of pain before that I can remember. It feels like someone is pushing or poking my stomach, pressure towards me. I'm still having some mild nausea, and the usual lower right side pain, but my bms look healthy to me.

I had a Remicade infusion last Tuesday but so far I'm not really feeling any better, I go back to the doctor in a week.

Yeah actually I have also lost a bunch of weight but that's because I stopped excercising and now I am having a mild flare. Try taking your mind off of whats happening. If you feel well enough to start excercising then do that.

Hope you feel better soon.

I just dropped a little over 40 lbs. I now have to go and get the Scope. Oh Boy My Favorite

Well I got my second remicade last Friday, so far I don't really feel much better. I have stopped losing weight which is good but I'm still having fatigue, abdominal discomfort/bloating and pain after eating. I'm now trying a diet lower in sugar and fat, hopefully that will help some.

I need to have more discipline with my eating habits, a lot of times when I'm feeling good I don't eat right and that only hurts me in the long run.

WOW i wish i could say i was worried about losing weight. I am currently on 40mg of prednisone and have been on it for pretty much a whole year. Different doses of course but in the past say 2 months i have gained 30 lbs it's so frustrating they say it's water weight but geese the prednisone isn't helping and it seems like i'm never gonna get off of it. anyway i guess i just wanted to say i'm jealous

One of the 'effects' of pred., common to steriods. increased appetite, added bulk. Its one of those good news/bad news sorts of things (at least that's how I look at it). A common scale (no pun intended) for watching the progression of this disease is via a regular weigh in.. If you r losing weight, they assume u r losing ground, conversely; if u r gaining weight, then u r assumed to be gaining ground. But weight gain due to a med that u can't stay on doesn't seem to my uneducated eye that good a milestone to measure against. I know they know that, but sometimes even they can forget to add 2 plus 2 and get it to equal 4.. you know what I mean