Flaring, College, and Frustration

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ArtKid
New Member


Date Joined Aug 2010
Total Posts : 15
   Posted 9/4/2010 10:28 AM (GMT -7)   
So I'm at college and find myself stuck in my dorm room most of the time in case i need to make a dash for the bathroom. I've been on Entocort for about 3 weeks and a few days ago it just stopped working for me. I'm starting to think its making my symptoms worse. In the beginning of this week i had constipation issues and now its completely reversed and i find myself running to the nearest bathroom every two hours.
I've been eating the right foods and all but still get sick. I'm afraid of eating now, and I used to love eating and trying out new foods with no problems before CD. but those days are long gone.

These problems wouldn't bother me so much if i wasn't in college and busy with assignments all the time. I love my homework (i go to an art college) but I feel to sick to my stomach to pick up my pencil and start sketching.

Does anyone have any suggestions to make the D stop? My doctor won't prescribe me Lomotil and I'm wondering why not? :/
but in the meantime are there any foods that help during such a serious flare up? drinks? meds?
19 yo. Diagnosed in summer of '10. Currently on Entocort

imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 9/4/2010 11:19 AM (GMT -7)   
I had the same problem last year (I went to the School of the Art Institute of Chicago, btw). I recommend giving your guts a break for a couple of days and go on a liquid diet. My drink of choice is Ensure (or off-brand when I'm really feeling like a poor college student, lol). Liquid diet usually helps me feel better. I know you're on entocort- but what maintenance med are you taking? Pentasa? Azathioprine? It may not be strong enough/have had enough time to start helping.

Have a good semester. :)
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Off every med while the doctors contemplate my diagnosis.
Been on: Entocort, Pentasa, Prednisone, Humira, Imuran

ArtKid
New Member


Date Joined Aug 2010
Total Posts : 15
   Posted 9/4/2010 11:26 AM (GMT -7)   
maintenance med? The only thing my doctor prescribed is Entocort :( but I think i need something on the side. My doc is really hesitant on giving me heavier medications, and so I'm on a test trial with this med.
But thanks for recommending the liquid diet. I've never tried Ensure but I'll get some today and try it out :) anything to calm down these symptoms >.<
19 yo. Diagnosed in summer of '10. Currently on Entocort

imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 9/4/2010 11:34 AM (GMT -7)   
Well, usually, a doctor will give you a steroid and a drug that you will be on "forever". Entocort is a steroid, and therefore shouldn't be used long-term, even though it is low dose. I was on entocort for a year and a half and am dealing will all kinds of issues (albeit, rare) from long-term steroid use. There are medications like Pentasa and Asacol which are an aspirin-derivative and are generally considered to be very safe.
I would call your doctor and tell him that the steroid alone just isn't cutting it. Besides, you're going to need something for when you have to go off the steroid.

I like chocolate Ensure. The vanilla definitely isn't as good IMO. The chocolate tastes like drinkable pudding, lol. It's pre-digested which means your intestines don't have to do any work- they just absorb the nutrients.
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Off every med while the doctors contemplate my diagnosis.
Been on: Entocort, Pentasa, Prednisone, Humira, Imuran

ArtKid
New Member


Date Joined Aug 2010
Total Posts : 15
   Posted 9/4/2010 11:43 AM (GMT -7)   
Yea my GI doctor plans to take me off of the Entocort when I return home for Thanksgiving break (to prevent any side effects from the long term use of the steroids) I have to call him this coming week and tell him i definitely need something else. I don't think I stress enough to him how much pain I'm in :/
and thats great about the Ensure (i love chocolate and miss eating it every day)
19 yo. female
Diagnosed in summer of '10.
Currently on Entocort

bookworm21
Veteran Member


Date Joined Mar 2008
Total Posts : 1766
   Posted 9/4/2010 3:39 PM (GMT -7)   
I agree with imissicecream--you need to be on some sort of maintenance med along with the steroids, the latter of which is for short-term use. Is there any way you can visit your GI at home or find a new one next to school? Doctors aren't always helpful over the phone.
 
Does sugar bother your gut? If so, then lay off the Ensure--if I remember correctly, it has a lot of sugar. If you can handle it, then try it. There's also Boost, which is very similar to Ensure. (I personally hated both of them!)
 
Are you registered with the Office of Disability Services at your school? They can email your professors about the fact that you have a chronic illness and may need some accomodations in terms of deadlines and missing classes. They can also help you find a dorm room with a private bathroom or right next to a public one.
Female, Age 21
Remicade, Asacol, VSL #3 DS, Vitamin D, Calcium, Prozac, Turmeric, Biotin, Zyrtec, Prilosec, Culturelle, Canasa

kelli_C
Regular Member


Date Joined Jul 2009
Total Posts : 130
   Posted 9/4/2010 8:35 PM (GMT -7)   
It's like God's idea of a cruel joke, considering that most people are diagnosed with IBD when they're young and going off to college. As if that's not stressful enough on its own, throw in the need to run to the bathroom all the time (and not even your OWN bathroom!), not being able to party wed-sat, and having general issues "down there" - it's a wonder we make it through!

But we do. :)

Keep your head up and continue being an advocate for your own health. It sounds like you and your doc are working well together - make sure you continue to do so while you're away at school. Good luck to you! :)

ArtKid
New Member


Date Joined Aug 2010
Total Posts : 15
   Posted 9/4/2010 8:37 PM (GMT -7)   
Hey Bookworm 21, I'm trying to stick with my current GI doctor but if he doesn't prescribe me on some other meds i might just have to consult another one. I can take a bit of sugar (but too much makes me sick, so i have very small quantities of it during the day) thanks for the advice :D

And I already went to the Human Resources at our school to get that done, but i'm just waiting for my doctor to fax them the information (and hopefully does it soon, because missing classes here is something i want to avoid) And as for my dorm I have my own bathroom and have a very understanding room mate (thank heavens for that!)
19 yo. female
Diagnosed in summer of '10.
Currently on Entocort

flowery
Regular Member


Date Joined Jul 2008
Total Posts : 440
   Posted 9/4/2010 8:55 PM (GMT -7)   
Hey Artkid!  Taking a steroid is going to "open" you up and your gonna have D often! that's the point of it..they don't want you to get blockage. I agree with everyone else you should also be on a maintenance drug also. This would help stop your flaring. For short term..I'd ask you Dr. if uses Immodium would help out with the D... I have Lomotil and it really doesn't help as much as Immodium! seriously! ...My GI said I can take up to 6 a day. It helps me alot..and try cutting out high carbs. I know it's one of the only things you can eat as a Crohnie so it's hard. But, try eating yogurt and get yourself on a probiotics. They sell probiotics at Walgreens.  This should help with getting some "good bacteria" in your intestines.
Also, if all this doesn't work short-term...you could always ask your Dr. for an anti-anxiety med..sometimes this will slow the intestines down a bit.
Soooo jealous your at a college for ART! enjoy! I was in school for that long ago:)...best time of you life!!
Take Care
 

jpnutritionfirst
Regular Member


Date Joined Apr 2009
Total Posts : 383
   Posted 9/4/2010 9:53 PM (GMT -7)   
In my humble opinion,
I wouldn't use ensure -- full of high fructose corn syrup and it's technically not an elemental formula. I'm anti-ensure mainly because i used to drink it all the time BEFORE i was diagnosed. If you have money to spend, I would order a case of Peptamen OS made by nestle. You can order it through their website by googling it. It's an elemental formula that you should drink exclusively. Seems to work as well as prednisone to get you out of a flare with no side effects. Another option is a shake called Absorb Plus (google that too).
I wouldn't use lomotil or immodium for diarrhea. Try using a supplement called L-glutamine (an amino acid fuel source for your gut cells). There's also the ayurvedic herb combination called bilwadi churna. Dry curd cottage cheese can also bulk up your stools. As far as yogurt goes, the ones commercially made have too much lactose and can worsen your diarrhea. I'd stay away from yogurt unless you make it yourself (incubate over 24 hours to get rid of all lactose). I'd stay away from yogurt during a flare though.
Anti-anxiety medication can be a life saver if you're really depressed, but it's never a good long term solution. Plus many of the serotonin reuptake inhibitors have GI disturbance as a side-effect.
Crohn's diagnosed 6/08
Organic SCD since 4/09
Remicade from 6/09 to 4/10
Low-dose naltrexone since 7/5/10
Boswellia + Natren's Healthy Trinity probiotic + Cinnamon + Wild Oregano Oil + vitamin D

SaraOnThisSite
Regular Member


Date Joined Feb 2006
Total Posts : 211
   Posted 9/5/2010 9:38 AM (GMT -7)   
This thread is making me remember my days in art school (I went to FIT). It's good you have yourself an understanding roommate! And hopefully once your paperwork goes through the human resources people will help you out.

Ill always remember the confrontation I had with a drawing teacher who didnt understand why I could go to class to draw (which was right across the street from the dorm I was in...and i.e. the bathroom!) but then when he said we were going to a nearby park to draw (i.e. no bathrooms, not even public ones nearby) why I couldn't go since I was in a flare up then. And he even had a letter from the disability department and technically I didn't have to even tell him as much as I did. It was really frustrating because he basically accused me of using my illness as an excuse not to go to class and I, like you, loved my classes and was always a straight A student so it crushed me that he thought like that. Eventually we worked things out but its rough being in college with this illness.

I wish I had advice to give as far as foods and whatnot but I can't figure out what works for me either :/. I do know that painkillers help a lot with both the pain and kinda slows down your stomach for a few hours so that can be a lifesaver when your in art classes that last for hours. I don't know if your dr precribes them (since so many GIs dont believe in using painkillers) but if they do, I would try that. They definitely helped me during times that were really bad and I had to be in the studio working.

Oh and I definitely agree with everyone else that you shouldnt just be on entocort, you should be on some other type of medication.

Good luck!
25 year old female, diagnosed in Aug '02 after being misdiagnosed with Lyme Disease for a year.

Have been on Prednisone, Asacol, Entocort, Remicade, antibiotics (cipro, flagyl, avalox, etc), and Mercaptopurine (even the lowest dosage was messing up my liver, argh) in the past.

Currently on Humira but isn't working, trying to figure out what to do next.

ArtKid
New Member


Date Joined Aug 2010
Total Posts : 15
   Posted 9/5/2010 10:10 AM (GMT -7)   
Thank you all so much for all your advice and support :)
Yes going to college is stressful (but is a good type of stress since I'm doing what I love) All of your suggestions have been a big help. I'll call my doctor as soon as the new week starts and hopefully get on another medication :)

thanks again!
19 yo. female
Diagnosed in summer of '10.
Currently on Entocort

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 9/6/2010 7:25 AM (GMT -7)   
Hi Artkid, which dose of Entocort are you on? Without more information about the dosage, it's hard to tell whether you are getting enough of the med to do the job. Typically, up to three pills, or a total of 9 mg daily, is required to try to induce something close to remission. The minimum maintenance dose is 6 mg, but as others have said, this is not a good maintenance med for the long term...even the clinical trials show a flare is likely within the year, when on the maintenance dose.
 
Also, it is unlikely that Entocort, by itself, will put a patient into full remission. Even when symptoms are gone, the inflammation can be festering in the body, causing damage...for instance, a stricture. To date, I have not seen a clinical study showing Entocort knocked out all inflammation in the small intestine, resulting in a clean colonoscopy...given the amount of money drug companies make off Entocort, am assuming they know it can't result in full remission...or I'm sure they would have plenty of pics posted, showing clean colonoscopies, to prove it works.
 
Entocort is a great med to take to get symptoms under control while you figure out the next step. The next step means choosing a med and/or diet that will create a real remission, and that possibly might be taken on a lifetime basis.
 
(Sorry, I'm going to have to disagree, flowery, and say Entocort, like prednisone, tends to cause constipation rather than D. In fact, when my daughter had C on prednisone the doctor said, "Good, this means it is working." Yes, a steroid can "open up" areas of the small intestine, which means by reducing inflammation, for instance, it can prevent or improve narrowing of the small intestine...but this does not cause D.) 

ArtKid
New Member


Date Joined Aug 2010
Total Posts : 15
   Posted 9/6/2010 11:07 AM (GMT -7)   
Well I'm taking 3 pills of Entocort (9 mg) every morning. Some days it helps while other days it just makes the symptoms worse. (I'm really getting tired of these fluctuating symptoms.) But I'm calling my doctor tomorrow to see what additional medication he can put me on (specifically for the pain)

I know that my doctor plans to take me off of Entocort (most likely in November) because as you mentioned this drug is not good for the long term and can have some bad side effects.

And as for what flowery said, well I had C earlier when i began taking Entocort and it was working, but now I have D which leads me to believe that Entocort is no longer having a positive effect on me.
19 yo. female
Diagnosed in summer of '10.
Currently on Entocort
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