HealingWell
Search Close Search
☰

Teen recently diagnosed with Crohn's. Tips please?

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/13/2012 1:30 AM (GMT 0)
I'm 18 about to head off to college, I was sick for about 2 months (pretty much the whole summer) before I was diagnosed with "mild/moderate" Crohns. My sympotoms early on were not as debilitating as they were just annoying. But things increasingly got worse. I became tired, started bleeding, losing weight. I was going only 2 times a day, but they were always watery with blood. I would have cramping right before I needed to "go", then once I went I continued with my day with no problems until right before bedtime. Pretty soon I realized I couldnt eat pizza anymore...I just couldn't. So that was the last straw and I went to the doc. They gave me antibotics, which was a terrible idea because my symptoms increased 10 fold. I got a colonoscopy 3 weeks ago and they put me on 20mg prednisone--let me just talk about this for a sec: I hear all of these horrible side effects of pred. How long do they take to happen? Because I've been taking it everyday at 7pm (not knowing it could cause sleeplessness) and I sleep like a baby come 11pm. When I told my NP I take it at 7 she asked "AM?" and when I said PM she gave me this surprised look, I also havent gained any weight back, anyways-- and they also put me on Asacol. I took it upon my self to take up a gluten-free diet (because of the pizza situation) and took up a dairy free diet per my docs instructions. And while I'm at it, I'm avoiding processed sugars as much as possible. So things seem to be going "well". I only use the bathroom once or twice per day, generally no cramping, but I still have some bloating symptoms (i.e. gurgling sounds after I eat, the feeling of gas moving through my intestines, noises, but its not painful as it is annoying.) How will I know when/if I go into this "remission". A lot of people complain about never having "solid" poops. What does that mean? Like rock hard or just formed. Because my are formed but just soft (sorry if thats TMI). They expect to start tapering the prednisone in a week. Is there a good chance that I will get worse after that happens? Is what I'm experiencing "normal" for someone on prednisone. This all seems just too "easy". Where is the catch? TIPS, ANYTHING PLEASE!
Posted 8/13/2012 2:19 AM (GMT 0)
I loved the Predisnone. I know that weird but I felt great. When I was on that and b12 shots I actually had energy. The doc said I would be crazy and not be able to sleep. I slept fine and that when I was on both. And they both are supposed to do that to you.
Posted 8/13/2012 2:38 PM (GMT 0)
Hi jhu_raven, welcome to the forum. Glad you found it! And congrats on getting ready to go to college. Keep coming to the forum while you're at school, you will find lots of help here.

It's good to know you're feeling better on 20 mg of pred. When you start tapering the pred, it is possible your symptoms will return. You need to taper slowly, and watch those symptoms like increased frequency, looser stool, blood coming back. If that happens, stop your taper and hold at that dose, or your DR might even suggest going up 5 mg for a while.

Do you know where your inflammation is? You can ask for a copy of the colonoscopy report if you are curious about that. The medications all work a little differently, and depending on where your inflammation is, a different medicine might work better.

Have you had a small bowel follow through x-ray? This is where you drink a barium solution and they take x-rays of your gut while the barium is moving through it. This will identify any areas of inflammation in the small bowel, because the colonoscopy cannot see into the small bowel beyond the terminal ileum.

You asked about stool - believe it or not, there is a grading scale that goes from 1 (totally stony constipated pebbles) to 7 (completely loose, diarrhea). It's called the Bristol stool scale. I think your DR would be thrilled if you had stool between a 3 & 4. Hopefully you will get there. It took me a looong time, and going gluten-free was the final solution for me. You've already done so much by eliminating dairy and gluten - I hope that you will find remission soon.
Posted 8/13/2012 3:08 PM (GMT 0)

First lesson on having CD...everyone has very different symptoms and different care and different reactions to care and different dietary restrictions.  It stinks because it makes it harder to learn from others, but we all share and find things out as we go.

I have mild to moderate CD also.  I always say I am one of the lucky ones.  Pred never kept me from sleeping either.  It did give me moon face when I had it the long term time.  I was a bundle of energy in the day too.  As kazbern said well.. watch as you taper for any variation in your symptoms.  Pred did give me "cotton brain" every time - that feeling that it was hard to pull a thought out of your head.

Tips...you may already do this, but I found dropping carbonated beverages and chewing gum were the easiest diet changes I made that had a huge effect in making me feel better.  Also, get to know your symptoms and when things change so you can describe them well to your doc---good communication helps with better care.

Hope you continue to succeed on the pred and taper!

Posted 8/13/2012 3:38 PM (GMT 0)
Hello,

I was stricken with Chrons in my late teens as well but bounces from doctor to doctor and was never steady on advice or medication. My first advice, in the town ou go to college get a GI you are
Comfortable with and listen and learn as much as you can from them. They are now your life coach. Learn to negotiate and ask the hard questions. Get into a relationship where you can both be open. If something is t working ask to change. It's your body not his/hers. Remember, you don have chrons because of a chronic deficiency in medicine. It's a genetic defect improved through medicine and each case is different, so it takes some playing with doses and habits. Also if you EVER feel extreme pay. And visably see bloating get it checked out ASAP. I nearly died after living with a twisted intestine at my termin ililium.

If you ever need more advice on surfing college or being a young person with chrons give me a shout. I'm here to helper you, as well as help me. I'm only a few years removed from college so its all still fresh.

Will
Posted 8/13/2012 4:00 PM (GMT 0)
Thank you for the quick replies.

They gave me a colonoscopy report the same day and said half of my colon was patchy inflammed. From the transverse colon down. They couldnt "see" inflammation in the rectum, but when they biopsied it they said there were signs of inflammation. They also said there was some minor inflammation in my stomach for which they just kept me on Nexium.

I had 2 tests with barium done. (My docs want to put me on drugs like Remicade because they say treating it aggressively from the start is best....I'm getting a second opinion before this happens when I get to my colleges medical center.) One test I drank the barium right there and waited a little over an hour for it to pass, then a radiologist came in with a wand looking thing and pressed on my stomach. He said everything looks "normal", but I dont know what they were looking for...and the second test was a CT/ Pelvic Scan and I had to drink the barium at my house at night then again the morning before the scan. The person doing the scan didnt give me any feedback. All of the information was sent to my doctor and my appointment is on Wednesday.

I have dropped off soda all and chewing gum. And when I drink juice I dilute it half with water. I'm also skipping the raw fruits and veggies for now (except banana because I love banana), only cooked fruits/veg. And raw nuts are a big no-no for me right now. I ate 2 cashews and it made my stomach tighten. I feel good enough to exercise and go out places. I'm just worried because they are tapering me right as I'm about to leave for college. I will be in the middle of a taper as I'm on a plane for 3 hours trying to get to school, so that worries me if it doesnt go well. Generally speaking, are people usually successful with pred tapers? Or are there usually some problems?

Posted 8/13/2012 4:03 PM (GMT 0)
I had no problems. My appetite took a hit and I felt a bit restless but I never had any horrible symptoms. Though horrible is quite relative. Any symptoms that are not Cheons symptoms are generally childs play.
Posted 8/14/2012 12:23 AM (GMT 0)
I tapered off pred fine, but I was taking it for joint pain, not flaring bowels. I think you'll do fine, you sound like a thoughtful and diligent patient. Don't be afraid to call your GI with any questions, though.

Many GIs recommend biologics for getting Crohn's into remission and keeping it there. They are very effective medications, and in fact, maybe the only medications that are shown to be truly effective for Crohn's. On the other hand, if your Crohn's is limited to the colon you might do very well with Asacol, the medication you've been given. You might want to consider using rectal mesalamine to treat the rectal inflammation, because the oral meds are not going to get there very well.
Posted 8/14/2012 7:25 AM (GMT 0)
I'm basically in the same boat as you, man. I'm trying to taper off of pred right now, too, just as I'm about to start college. For me, pred has resulted in moon face, insomnia, some minor acne increases and minor hair loss. Nothing too bad; mainly annoying. Everyone thinks I got my wisdom teeth out because I'm all puffy, haha.
Posted 8/14/2012 2:54 PM (GMT 0)
Welcome, raven! I admire your courage and your pro-active responses so much! I wasn't diagnosed until my early fifties, so I was spared the challenges of having to deal with CD during college--and I'm forever impressed and proud of those of you who manage to make it through while handling a tough disease. I hope you know that you can come to this site at any time--both to ask questions and to vent and rant--whenever you need to. And believe me, there's no such thing here as TMI. It's a real relief to have someplace where you can talk openly about anything, including things that you're afraid to bring up with other people. You'll be in my thoughts today. Hang in!
Posted 8/14/2012 10:49 PM (GMT 0)
Thank you for your kind words, kazbern and nawlinscate.  :-)

Also, I'm not so sure the asacol is working 100% because sometimes a pill will show up in my stool, sometimes its just the shell, but not always. I take 6 per day, but if there is one undigested pill I can see I'm sure they're others I can't and I'm certainly not going to go looking for them! I think I have to give the prednisone most of the credit.

Codfish, how long have you been on pred? And how long have you had symptoms for? Did they only start once you tried tapering?

Posted 8/14/2012 11:29 PM (GMT 0)
I've been on it since mid-June. The insomnia was from the first night, but it isn't as bad now as it was in higher doses (I started at 60mg I'm pretty sure.). I first started to notice my face swelling after probably a week to ten days. The acne and hair loss came later. I can basically control the acne (it isn't terrible, just in places I've never had it before, like cheeks and chest), and the hair loss isn't noticeable, I can just tell more comes out in the shower/when I brush my hair (I cut my hair shorter and started taking biotin in hopes of helping, and I can at least say it hasn't gotten worse). I also have gotten the occasional random pain in a knee or two, but that might be the Crohn's itself.
Posted 8/15/2012 1:36 AM (GMT 0)
hi jhu-raven,
Welcome to the forum. You sound very intelligent and I think you will do a great job communicating with your doctors. It is normal to see beads, or parts of the Asacol in your stool...don't worry about that. You are still absorbing what you need. I hope you are able to find a good GI at college and that all goes well. I can imagine that this is all very stressful for you, but hopefully you will take things one step at a time and it all goes well. Check in with us now and then...we'll all be cheering for a great transition to school!
Posted 8/15/2012 4:01 AM (GMT 0)

Raven. This is one great site.  More information on here then you can get from a doctor.  Believe me. been there done that.  I keeping telling my doc they should tell Every patient about this site.  As to the predisone, i have been on it for over a year.  20mgs.  I will be tapering soon, as i am going to try Cimzia.  I start  my first dose Thursday.  I too did get a moon face when i was on 60mgs and let me tell you about energy.  Mood swings also.  I forwarned the ppl i work with about the mood swings.  They were cool about it.  I too, do not do nuts,fruit,dairy, steak, and no more Tobasco sauce.  That one really hurt.  oh well.  With this disease you have to take it one day at a time.  Works good for me.  Good luck in College.

 

Posted 8/16/2012 3:25 AM (GMT 0)
Thanks everyone! Rest assured I feel very welcomed.

My doctors also recommend putting me on Cimzia. But I honestly think its wayyy to early for that. Their justification is that I have stomach involvement, so they think biologics are best; however, I was reading the basic literature for it (Cimzia's own pamphlet) and it said: increased chance of lymphoma in teenagers and young adults AND used as a "last resort medication". I am a teenager and this is my first resort. I dont understand their logic.... And god only knows the long terms effect of this medication. And then what happens if the "last resort meds" dont work. That would seem pretty disheartening. Besides I seem to be responding to the low dose (20mg) of pred + asacol. Whats the big rush with jumping right on the biologics? Either way, I'm going to get a second opinion and might be more inclined to the opinion of Johns Hopkins medical center doctors than my local GI, which of whom I cant seem to get a straight answer out of. I'm starting the taper tomorrow. I'm not too worried because if I get worse I can just hop back on the 20. It seems to be okay for now until I get to JHH. I should have an appointment with them by the end of the month.

Posted 10/8/2012 12:03 PM (GMT 0)
Since you are newlly diagnosed with a mild form of CD, you have a very good chance that you can put this into remission buy simply changing your diet.  I see by your posts that you already are eliminating some bad foods and I commend you for that,  but I would suggest you read the book "Breaking the Vicious Cycle" which is about the SCD diet. This diet elminates all processed foods, all foods with sugar and all foods with high carbs that convert to sugar. The theory behind this diet is the cause of CD is because you have a out of balance in your bacteria in your gut. The diet eliminates the sugars that feed the bad bacteria therefore starving them out of your system. In return, the SCD diet tels you to eat home made yogurt to replenish the bacteria with good bacteria. 

This diet has helped many people to put your thier CD in remission. This diet seems to work the best in newlly diagnosed people who haven't had much damage done to thier intestines yet by CD.  There are many people on this site that have had great success with this diet, so you have a wealth of information you can tap right here. You have nothing to loose by ytying and all to gain.

Posted 10/8/2012 3:13 PM (GMT 0)
My best advice for you at 18 would be to exercise. Exercise! Take the minimum drugs you can get away with for as long as you can to stay healthy, question everything, don't be afraid to get second opinions on the doctors suggestions and.... Exercise

If you don't participate in sport; start now while your young (har! I sound like an old man at 33;-) ). Try any sport you can think of until you find the one you get addicted too. I started mountain biking 4 years ago. Best I've ever felt until I snapped the frame last year and now haven't ridden in 10 months... what do you know flare up again! got my mates bike now, time to get back into it.
Be positive.
Posted 10/9/2012 2:11 PM (GMT 0)
If you can, in my opinion SCD and exercise is the best advice that you can get.
It is what put me in remission. It might not be easy, in fact there are days when it is a pain in the ...
But it is much easier than being sick. If you can not do it now, (I could not do it when I started SCD), hopefully SCD will heal you enough to start exercising.
Not alll can do it, But IMO SCD and exercise is the best advice that you can get.
Dave
✚ New Topic ✚ Reply