HealingWell
Search Close Search
☰

recently diagnosed and needs advice!

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/21/2010 4:09 AM (GMT 0)
I am 16 years old and I was diagnosed with IBD Feb '10.  My doc thinks it's most likely UC but is still leaving my diagnosis open because it's still too early to tell.  I had been on bentyll in early Feb because my GI thought that that I had IBS, but it just made my symptoms worse and I was had a colonoscopy.  Following the colonoscopy, my GI prescribed me with prednisone and asacol (2 pills 3 times a day).  My parents were too scared to let me take the prednisone, but I did take the asacol.  While the asacol did help a little, blood kept appearing frequently and I still had to go 5+ times a day (my asacol was later upped to 8 pills total but didn't make much of a difference).  Last week my GI gave us a choice between taking prednisone and cM6 (i think that is what it is called) because he felt that I should've been into remission by now.  We chose prednisone because my GI told us it was less risky than the other medicene and that IBD gets less responsive to meds if you don't treat it aggressively enough.  He also told us that he does not believe that diet will make a significant impact to remission (I'm on a very strict diet now anyways, as I've become extremely intolerant to dairy, fruit, vegetables, anything with, high fat, salt, or sugar, and spicy foods).  I'm starting out at 60 mg (30 in the morning and 30 at dinner), and then he's going to taper it down according to my response to the medicene.  I started the medicene Friday morning and the next day i only had to go to the bathroom once (the same happened Saturday and today).  I feel great but I'm still concerned because I'm still seeing blood.

What should I be concerned about with prednisone?  Is weight gain inevitable?  Did you notice any other side effects while taking this medication?

Do you think diet contributes to controlling this disease?

How can I prevent against a flare up once in remission?

What is the best way to cope with living with UC?

I really appreciate all answers, I hate living with this disease and I want to go into remission so badly! 

Posted 6/21/2010 4:11 AM (GMT 0)
oh and is it common to lose 10+ pounds if you have ulcerative colitis?
Posted 6/21/2010 4:17 AM (GMT 0)
The Specific Carbohydrate Diet is working for me. The prednisone was not working(prednisone intolerant) and the next step was 6-mp. No way. As a pharmacist, we studied these drugs. It was not an option for me. The diet is hard to adapt to at first. Heck, I went to Hometown buffet and all I could eat were the steamed carrots, steamed green beans, turkey, and roast beef, and also a salad. The rest I could not touch, but I don't have to run to a bathroom right now. It is quite empowering.

Whether you decide to take the meds is up to you? My only regret is not knowing about this diet at 21 yo, and suffering for 10 years being on and on prednisone or cortenemas. Life is good right now, and will get better.

Good luck. There are a lot of great people on this site that will give you great advice. Mine is only one perspective.
Posted 6/21/2010 4:25 AM (GMT 0)
I was just diagnosed in April of this year. I have UC in my sigmoid. I am taking Apriso (4 pills in the morning) its the same as Asacol only that it is a slow release pill. I'm also using rectal enemas called Rowasa. Rowasa has really help me. My doctor wanted to give me prednisone but I told her I wanted to try Rowasa first. I've never taken prednisone but I've heard that it may have some side effects. Where is your UC? Why don't you ask your doctor for rectal meds they may help you if your UC is in your sigmoid or rectum. I haven't reached remission but I think I'm close. Ever since Rowasa (2 weeks now) I've noticed less blood and less urgency. I am also trying to do the Specific Carbohydrate Diet. You may want to look it up online. There are great reviews on it. I hope I helped you.
As far as your other questions I'm wondering the same myself. Hang in there. This forum is very helpful. I'm glad I found it.
Posted 6/21/2010 2:23 PM (GMT 0)
Welcome to the forum!
Gosh, I'm sorry for your troubles.
Yes, weight loss of 10 lbs or more is very common with flaring. Once you get it under control you'll stop that dramatic "losing" thing.
My son was diagnosed at 13, and he had to do prednisone. His colon was a mess, and it seemed like the best option to us. He also started Asacol, which he still takes. He was on and off the prednisone within 4 months. Yes, he did gain weight, but at that age he wouldn't listen to reason about what to eat when he got the "steroid munchies!" If one eats lower calorie foods and stays away from salty snacks, that weight gain can be less than if you give in to the urge to have burgers and chips constantly!
Your diet sounds like the exact thing many of us have discovered - certain foods make the symptoms worse while we're in a flare. Can you eat cooked fruits and veggies.....? I can eat a lot of things as long as they're cooked soft.
Some of us find that diet makes a huge difference in overall UC (frequency of flares, severity of flares) but others don't. I am one that does fine on a pretty non-restrictive diet - although, because I've had UC for almost 24 years, I have sort of adapted what I think is "normal" to eat. When I'm not flaring, I can eat anything I want - salads, etc.
Are you in school? How's that going? Do you have a 504 plan in place? (If not, I'll be glad to share our experience with that.)
I would suggest a probiotic. My son had a little flare this spring and it responded beautifully to 10 days of an antibiotic (flagyl), upping his asacol by one pill, and adding a probiotic.... also, we added a fiber supplement, which often in our case clumps the poops together (even if the rest of the world thinks of them as laxatives....lol.)

To answer your questions, the side effects of being on prednisone for a long time can be nasty, contributing to osteoporosis, etc - but if we're on it not too long, it's the immediate side effects that are obnoxious. But, it does help a lot of people get unflared relatively fast.

If you haven't yet, check out ccfa.org and the "kids and teens link". there are some good tips, even the small things, like carrying your pills in a mint tin so you don't feel so weird having them on you.

I hope you get out of this flare asap, and---- ask any questions! :-)
Posted 6/21/2010 3:06 PM (GMT 0)

Hey Christina

First off, welcome to HW ;]

I was diagnosed at the same age as you so I understand how frustrating (and scary) this is for you. Here are my answers to your questions:

1. Concerns about prednisone - Weight gain, acne, and insomnia were my most common side effects. All three went away after I stopped taking the meds. You can combat the weight gain by exercising, which is also suggested to be good for UC.

2. Does diet contribute? - I believe that diet can help exaggerate/reduce symptoms when flaring but it will not actually cause a flare or induce mission. When flaring, you have to find out if certain foods/beverages aggrevate your system and avoid them. In remission, you should be able to eat/drink anything you want.

3. Can you do anything to prevent a flare? - There's not really a magic solution to preventing a flare. If there was, we'd all be doing it. Stress is a big factor so try to keep your stress level low. You can't stop stressful things from happening in your life, but finding something to relieve the stress (ie exercise for me) can help.

4. Best way to cope with UC? This is different for everyone because our cases are all different. For a long time I just sat around feeling sorry for myself, but then I realized that wasn't making me any better. Finally I realized that there a million different health conditions that a million different people have and this one is mine. It's not going to kill me and I have lots of options on treatment. In other words, it could be A LOT worse.

Posted 6/21/2010 5:06 PM (GMT 0)
Taking Prednisone is better for your body than being in a flare. What you want to avoid is long term dependance on Pred but your doctor will avoid that.

You might end up with acne as the most visible side-effect from pred so you might want to contact a dermatologist if you notice you start getting it. Go for the good creams and be very careful with oral acne medications (antibiotics, accunate) due to the relatively high risk of affecting your UC.
Posted 6/22/2010 3:21 AM (GMT 0)
Everyone thank you so much for your advice! Most of this stuff is still new to me and many of you mentioned things that I haven't even heard about.

@blueclassring It was 6mp that was my other option (not cm6 lol), but my doctor strongly advised against it so I am very happy that I chose prednisone instead. I'm going to look more into the specific carbohydrate diet, as many others on this site also suggested it. I find it very hard to find foods for me to eat because I've always had a very sensitive stomach and it has become even more so since I was diagnosed. And yes, I can eat cooked carrots and apples but I cannot eat anything with skin right now. You are the first person to tell me that I will be able to enjoy the same things that I used to and I truly appreciate that!

@missey My doctor said my disease was in the transverse and descending colon, but they did find a little bit of inflammation in the ilium (my parents took me to Cleaveland Clinic after this for a second opinion and they were convinced it was crohn's, but my doctor assured me that he's almost positive it's UC). He didn't mention anything about rectal meds, but it's too late now to take them because I'm already on prednisone.

@songlady So, when you go into remission you can eat everything you used to again?! I'm on summer vacation now, but dealing with this condition during school was really tough. I'm a very competitive person, and I get stressed out and frustrated easily. I used to get really nervous before tests because I don't want to let my parents down by getting anything less than a solid A on my report card. I was also dissappointed this year because my parents wouldn't let me join track because they thought it would be too hard on me. And it was really embarrassing having to leave the classroom multiple times to go to the restroom. I would become really irritable and lash out at my friends when I didn't mean to - it really sucked. But everything is becoming a lot better now and I almost feel like my old self again! What is a 504 plan? I've never even heard about it before. And thank you so much for your advice! I'm the only one in my family with IBD, so no one really knows how I feel about this or what to really expect.

@juju0010 Thanks for your advice. I now see that my biggest challenge is overcoming myself (especially my stress). I am going to use this summer vacation for a ton of R and R. What I'm mainly worried about is when I get back into school and start obsessing about grades, friends, and sports again. I was thinking about starting a yoga class because I've heard that is especially helpful in reducing stress.

@chcl I haven't experienced any acne so far (I've never had acne in my life), but I'll be sure to keep your advice in mind if that symptom should occur.

Thank you so much for everything! It's great hearing from people who actually have UC that everything is going to get better, and I now feel much more at ease.
Posted 6/22/2010 5:58 PM (GMT 0)
Christina - welcome to the forum and sorry for your troubles.
I would like to add that probiotics and rowasa enemas have helped my daughter with UC. Ask your Doctor about VSL#3DS. This is the most widely prescribed probiotic, which has shown some very good results. Probiotics are good bacteria that can help regulate your digestive system. We started the enemas during a hospital visit and they help calm things down, have very little side effects and are very easy to get used to.
We also believe Psyllium Seed Powder has helped her a great deal. You can search for both VSL#3DS and Pysillium Seed Powder to see what others think about them, but both of these are natural and as far as I know do not involve adverser side effects.
I would also suggest searching prednisone/steroid tapering. We were unsuccessful on our first attempt to taper off of pred, but it worked the second time when we went a little slower and started the Psyllium Seed Powder.
You can see what we have tried in the signature below. We have tried lots of things that help reduce inflammation and we do not know exactly which ones are helping the most. I remember searching this website for ideas and we found some great ideas and advice. My daughter especially liked the ability to ask other patients questions about IBD. Seems to me that getting the first flare under control is a challenge for a lot of folks with IBD. We had lots of struggles, but my daughter is doing well for now.
You seem like a very smart young lady and you've found a great resource here.
Best of luck to you and God Bless.

UCPop
Posted 6/22/2010 7:57 PM (GMT 0)
Christina -
You can do rectal meds and prednisone at the same time. Actually, starting some Rowasa (5-ASA) enemas while you're tapering off the pred might be a good thing!

For me, (and my son) - yes, when not flaring, we can both eat anything we want to. When flaring... well, I've gone a few summers of not having corn on the cob, and... so, I just remnind myself there are worse things in life to have to deal with!

Again, the ccfa site has info about a 504 Plan. When my son started high school, his GI recommended it (he got sick in April of 8th grade and had to miss the rest of the school year.) His doctor wrote a note saying that because of his illness he would be absent from time to time, would have more tardiness than the regular person, and he needed to be allowed to use the restroom AT ANY TIME. Also, some thingy about test timing - so that if he was taking a timed test and needed to use the bathroom, they'd give him the extra minutes later. They also gave him a laminated lav pass - :-)
It's under the Persons with Disabilities Act, and there is a model form you can print from ccfa.org. We cut it way down and made it simpler, but it'll get you started.

I hope the summer bring you a time of healing!
Posted 6/23/2010 12:37 AM (GMT 0)
Christina-ANY inflammation in the ileum is usually crohn's, not UC. I'd go for a second opinion.

Also, 6mp is not as bad as the doctor makes it sound, they HAVE to tell you everything that goes wrong for legal reasons. I have a lot fewer side effects on it than I ever did on prednisone, and long-term I'd be more afraid of the pred than a mercaptopurine drugs.

As for pred side effects, the worst are probably the mood swings and insomnia. I also had acne, food cravings, and weight gain.
✚ New Topic ✚ Reply