Diagnosed earlier this year

diagnosed earlier this year

Hi all,
First off, it's comforting to see that I'm not the only one with these problems. I got diagnosed in April this year. I had no idea what was wrong last November, when I would get home from school and sleep 12-16 hours a night. I have had back pains since I was about 13, so when they got even worse I thought it was stress/sitting too much. I didn't get treated back then, but finally got everything checked out late March when I was having fevers daily and could barely get out of bed. After corticosteroids for 2 weeks and pentasa i've been doing great. I traveled all summer and had no problems. Until now. I just started medical school a few weeks ago and it just hit me a few days ago. My back started hurting (upper mainly)... I felt warm... and then the stomach pains came.. spent a day in the bathroom... then nothing for a day except for cramps... and today I got home and couldn't even stand for 2 minutes, I just fell asleep for a few hours. I am really scared because I can't miss school, I need to study like crazy, and I need to be alert and ready to go when talking to patients. Today all of that was SO hard to do. Since this is my first flare (I'm assuming it is a flare..) post-diagnosis, I'm wondering how quickly flares can be calmed, what some ways are to get my energy, reduce back pain (can I take tylonol?). Also, how do you deal with this emotionally? I feel like I don't want to annoy my family and my boyfriend by constantly complaining... even though they are extremely supportive... I just feel bad pulling them into this too. I also get really upset but mainly from being scared about how this disease can affect my life. Any advice?? Sorry this is so long! But it's my first post on a forum ever
Thanks!

Hiya Purelife
and welcome

I've moved you to your own thread so that you won't be missed.
Sorry you're going thro a flare at the moment, have you spoken to your gastro about this?
Have you had your vitamin B12 checked? As you will see from the thread that you originally posted in, fatigue is a killer with this disease. Lots of us suffer with it, it's when the immune system goes haywire and struggles. A lot of people drink the power drinks, Gatorade, Powerade etc. I drink Dioralyte to boost my electrolytes when I'm flagging.
Stress is a killer too, probably why your symptoms have kicked off again. I can't stress enough the importance of rest during a flare, and over hydrating with plenty of water.
Hard when you're trying to study I know.
I would speak to your GI and get something to calm it down before it escalates. In the meantime have a read of the diet and fitness sections on here regarding the low residue diet.
You can come and vent here with us anytime! We know how you feel.
It's ok to take Tylenol, just stay away from NSAIDS such as Ibuprofen, Advil etc
Take care, slow down, deep breath and
good luck
Joan xxx

HI purelife, welcome to the forum . i am sorry your still suffering. Like astra said go to your GP and get your blood work done up and to check for your B12. To see if it's low usually with crohn's patients the fatigue is related to low B12 count. Try not to stress yourself out it will only make matters worse and get plenty of rest in between studying and if you need support the forum is always here to help. i know it seems like a burden to rely on your family and bf for support but if they understand then it's not a burden. Just sit down and talk things out. or you can vent here. best wishes.:rosette2:

scott

Hey there and welcome In addition to what the two fine folks above asked, have you had your iron levels checked as well?

See you around the forum!

*hugs*

I think you would appreciate reading this post and the responses. We have really good friends here that remind us of how loved we really are.

http://www.crohnsforum.com/showthread.php?t=12000

I hope you feel well soon!

Loads of hugs! :hug:

Thank you so much!!!!!! I am going to a new GI doc today actually. I hope he'll be a good one! By the way, has anybody heard of Low Dose Naltrexone?? Is anybody taking it?

http://www.crohnsforum.com/forumdisplay.php?f=32

You'll find everything you need here ^
about LDN

xxx

So I just went to my new doc today. He was really great at answering all my questions. I am getting on Prednisone, 20mg, for a few weeks. Not sure how long, but I'm doing a follow up with him next week. Last time (with a different doc) I did 60mg and tapered down to 1mg in only 15 days, this new one says that's not a good idea and I probably did not heal completely. Any insight on what you guys have done with corticostereoids?
Other than that, getting my blood drawn soon, seems I might be anemic. Hopefully I can get rid of the pain and fatigue soon!! Also, he said that a lot of people are able to manage and avoid flares, even with high stress, so that's good news! Just trying to squeeze out the positives and keep on pushing Again, thanks for all the support and all the links. Oh, and also, the doc said that he's not comfortable enough with LDN yet, he wants to see some larger, randomized studies done.
Best wishes to all of you!

YIKES! 15 days to taper 60 mg!!??

I was prescribed the same amount, but tapered in 6 weeks - going down 10 mg each week until finished. Your new doctor sounds a bit more wise. Whew!

Steroids are usually a temporary fix until you can get on some other maintenance meds, like Pentasa, Asacol, Imuran, or the biologics...or LDN. Rarely can prednisone alone take care of a flare. You may just flare all over again when you come off if you dont have another med to take its place for inflammation.

My GI said the same thing about LDN when I wanted to try it.

Yeah the 60mg was pretty bad for my sleep... I would wake up in random hours of the night... Have you had those problems?
But with the last time, and this time, I have also been on Pentasa, which my doc said may not be strong enough... We'll see! I started the 20mg Prednisone this morning. I got a bit jittery and a little nauseous, hopefully I can have a good sleep tonight. I'm still feeling really fatigued right now...

One big question, what's your solution to taking a lot of pills, especially in the morning? I want to start taking more vitamins and supplements, but I feel like it will make me sick if I do. I don't like eating a big breakfast... which seems necessary for such a big load.. Suggestions?

I know how you feel. I have the same problems with the Prednisone! You are almost done though, so keep strong. It will definitely help you.

This sounds stupid, but I take the kids gummy vitamins. They aren't as strong, taste good and are easy to eat. And I space out my pills. I take something with every meal. Also, my GI told me Immodium is safe all the time. I take it even when I'm cramping and don't have diarrhea. The vitamins will help with the sluggish feeling too, but make sure you are drinking enough water. Sometimes that's the trick to getting more energy.

I'm glad you found a better doctor. Good luck!
Andrea

Thanks Andrea! Great, now I have a good excuse, I love the gummy vitamins
That's a good idea, spread out the vitamins at least. Yeah Immodium is my lifesaver, especially if I'm nervous about something I'm about to do, I have to take it before any symptoms to stop from running to the bathroom later. I've upped my water and gatorade, and I'm still tired, but not as bad as the past days.. I don't think the Prednisone would work that fast (several hours), so maybe fluid is helping. My back is killing me though! I'm trying to put in a good amount of studying and it's really painful sitting up.

I'm so happy I found this site.. even with a lot of support from the people around me, I feel like I can really get everything out here It's good for my emotional stability. I've had a few hard days.. being scared of the future and how this will develop, etc etc, but seeing so many people going through the same thing is giving me a lot of strength

Thanks

Careful girls with the Imodium, not a good idea to take long term.
Your bowels need to keep to a natural peristalsis. There is a high risk of blockages and constipation.
Not too bad for emergencies, every now and then, but certainly not as a preventative.
Just my personal opinion
xxx

I love gummy vites! Thanks for that tip!

And speaking of tips... Astra... thank you for your bit on imodium. I have never taken it - just dealt with the D most of the time. But lately, having regular formed stools, and then a sudden unexpected D yesterday, I got to wondering about imodium. I appreciate ya!

:hug:

Oh yeah, I meant just before an interview, or big test. My bowels just go crazy when I'm nervous!

So I've done just over a week on Pred, feeling better, but still having some pain... not too bad.. so I'm not sure if it's symptoms of the flare or just 'normal' stabbing feelings in my guts..
I'm going to see the doc again today to follow up, see how long I'll have to stay on Pred.
Btw, what do you eat for breakfast?? I feel like anything I eat is too heavy and makes my stomach hurt... Even a banana seems to be too heavy..
PS. I just had my 1st med school exam and tried not taking immodium beforehand. It was a little tough at first, but I got through w/out running to the bathroom! Yayyy!

**Hugs**

Congratulations on a test well taken! Let us know how you did on the test when you find out your score!

2 pieces of great news! 90% on the first exam and I got my blood works back, no inflammation! My CRP was <1!!! And I'm not anemic anymore! I guess the pains/symptoms I was having was just stress. I'm tapering down on the Prednisone now. Glad to share good news.
How are you doing?

HI Purelife, It's glad to see you are doing so well your blood work and tapering down on predisone nasty drug. As for me i am still stuggling with my flare up and i am also tapering down off predisone. But i don't know how long i can stay off it. But it didn't seem to work for me. I will probably will have to go and see my doctor again and see what he has to say.
i am glad your doing so will keep it up and keep us posted. Best wishes

90% is a fantastic score! Well done!

And I'm so glad you're healthy. :hug:

Hi Purelife,

Welcome. It is easy to drift into complaining about the many bizarre and varying symptoms we all get. I was diagnosed two years ago, with another year of symptoms before that. Here's a funny story.

This July I went for a c-scope and EGD. I brought my GI some medical reports from when I had a partial small bowel obstruction almost 10 years ago. He took the reports and read them before my c-scope that morning. He said the same thing is going on with you today. This July the obstruction was not as bad, or maybe it was as bad but it didn't seem like it?

I opted to get this knee replaced instead of dealing with the Crohn's. The GI suggested I get the knee because I already know what to expect from Crohn's - essentially it ain't gonna kill me, but the knee would improve the quality of my life.

What I'm saying is we can take chances in life just like the man or woman who doesn't have Crohn's. We cry, we moan, we agonize. we mourn and grieve until we're on our knees gasping for air and blowing our noses. Then at one time or another most if not all of us wipe the tears away and say WTF? Maybe I better figure out how to live again?

Then we work on developing a thicker skin, a higher tolerance for pain, and map out the bathrooms everywhere we go. We eat stuff we know we shouldn't eat and get the sh_its for weeks on end. But eventually we discover that we can do mostly anything anyone else can do. We even connect to our souls and start dreaming again.

Then we come back here and and listen to the new man or woman who felt exactly like we did which is how you feel now, and God willing, offer them some hope and maybe even inspiration to take a few risks and stop being afraid of their shadows.

OK so now you got your marching orders. You're smart and talented. I'm confident you're already figuring this out. Any questions? We're all here to lend a hand.

I know exactly how you feel purelife, I'm studying chemistry at uni and it is so hard to stay alert and study hard! But you've done amazing in your results, well done! and it's an even greater achievement that you did that in spite of such adversity so you should be so proud of yourself
I'm on steroids at the moment too - third time this year - hope they go well.

Good luck with medical school
xxxxxxx

Hi guys! Thanks for your wonderful responses!

scottmyster, what are you usually on when not on steroids? I just talked to a doctor/professor here at my school who not only had Crohn's patients but also has had Crohn's himself for many many years and his son has Crohn's as well. He shared with me that his son was diagnosed with Crohn's at age 12 and started Humera right away. He has been in remission since and he is now a 4th year med student (so probably around 26). The doc is also on it and says it really works well for him. He suggested I go on it even though I have a moderate case, but my actual GI said to hold off. Just a suggestion, if you keep going on Pred.

Thanks for your encouragement Regular Joe! What I always find inspiring is that people at every stage of the disease still find strength to push forward. And yes, those nights when you're lying in bed, scared of what's waiting for you in the future and what you'll have to face tomorrow with tears streaming down take a lot to get through, but when you do and you look back, it feels kind of empowering. We can get through it and live normally (in our own special way.. ). Also, it made me laugh, I know that drinking milk or eating cheese or a burger will hurt, but sometimes we become like little kids and just ignore the repercussions and go for it. Why do we do it?!?!

vickyhunter, I know how hard it is! Make sure that you let your professors know what's going on. That's what helped me in my last semester. I missed over a month of my last semester of senior year. I had to finish up my finals and senior thesis. Because I let all the professors know what was going on at every stage (I didn't know I had Crohn's until the end of that month) they were very supportive and allowed me to make up exams, assignments, etc. Man, like school is not hard enough without this... but just keep fighting, you'll do great Good luck with your studies!!

HI Purelife, When i am not on predisone i am just on asacol, modulin, dicetel, and 10billion of probotic supplements and omega-3 fish oils. i was in remission for 15 years and just recently had a flare up the flare is starting to die off. then i am off the predisone. i only take it for a couple of months if it flares up and longer if it don't.I guess it all depends on how long the flare up lasts. i hope this helps. Best wishes.

Scottyster, what probiotics are you on? I'm looking to start taking some, but don't know where to start.

HI Purelife, The Probotics i am on are 10billion strain i usually get it from the GNC store or you can get at your local walmart, But, at walmart you usually get 5billion strain.so , you will have to take two tabs. if i were you i would go to a nutritional store like GNC or any other nutritional store they should carry it. and get the good brand, at least 10billion strain and just take one tab for maintenance . But, LIke i said if you can't, then go to the drug store sometimes they carry it you can ask them directly. or just go to walmart in the vitamin section if you can't find it right away just ask the pharmacist.best wishes

scott