My son was diagnosed 7/10/14....I have questions.

Hi there,

My 18 year old son was just diagnosed. Actually, he had a colonoscopy on Thirsday and in the brief encounter I had with the GI that I had not yet met, he said it was colitis. Didn't specify what kind. He wrote a bunch of prescriptions (pred. 50mg for a week, 40 for a week, 30 for a week, etc., Asacol 1600mg/twice a day) told me to put him on a low residue diet, and left. We haven't received the results of the biopsy or blood tests yet, but we have another appointment with the doc on the 26th.

Anyway, I had never even heard of colitis before so for the last week I've been trying to educate myself on this condition. I've spent a lot of time reading different post here and I have to say....I'm just lost. There's just so much conflicting information.

So, my questions...How long does a flare generally last? Will the meds he's on make the flare go away or are they just to help the symptoms? When should he start feeling some relief from the meds? When this flare does finally pass, will his diet determine whether he flares again?

He's struggling to find things to eat. He's vegetarian and has now cut out all dairy, gluten and processed sugar. He still eat some fruit....mostly banana. He makes a smoothie with almond milk, banana and peanut butter. He sautées mushrooms, zucchini, and spinach with garlic and eats it with eggs or potatoes. He eats white rice depending on how I cook it. Hates it plain though. This diet has really thrown us for a loop as we normally eat very high fiber meals. Lots of whole grains and fresh veggies and beans.

Also, he's been on the meds for two days now and has not noticed a change. How long before he starts feeling some relief?

I sincerely appreciate any help you all can give us.

Thanks!

1) Flares can be as short as a week or they can never go away. Ive have been in a constant flare since I was diagnosed (5 years now). But dont be afraid, this isint typical. Most of the people on this forum represent the population of UCers who have it the worst off, so take our experiences with a grain of salt.

2) The meds will do both. Their main purpose is to reduce inflammation which both induces remission and deals with the symptoms.

3) Relief can take anywhere from 48 hours to 3-4 months (assuming the meds work). The mesalamines (Asacol in your case) can work anywhere from 3 days to a few weeks after starting. However, the prednisone he got should induce remission (or at least seriously help) anytime after about 48 hours.

4) Diet it s touchy subject. Some people claim diet makes all the difference and there are tons of UC diets. While other say diet makes no difference to them. Ill leave the diet stuff to someone who has more experience with the stuff though

Bananagirl, he's going between 5-8 times a day. When he has to go, he HAS to go. He spends quite a bit of time in the bathroom once he's there also. He's also told me that he feels constipated. That's actually what he told me a month ago, and for weeks I was feeding him extra high fiber foods, trying to help him go. Little did I know that was just making him worse! Is it common to feel like you're not getting it all out? I know he's not super comfortable talking in detail about his bathroom habits so it's hard to get accurate information from him.

Thank you all for your responses. I've got him writing everything down. What he eats, how he feels, when he goes, etc. Hopefully we'll see some sort of a pattern as to what foods bother him. I'm hoping these meds will start making him feel better too. I read that stress is a factor too, and I'm trying to get him to work on managing that too. You wouldn't think an 18 year old would have too much to stress about, but he is a worrier. It breaks my heart to see him so miserable.

Garylouisville, I've already become more patient. I do feel incredibly overwhelmed though. So many unknowns.

Marauder, I can't believe you've been flaring for 5 years! You poor thing. I feel for everyone of you that's suffering from this horrible condition.

That feeling of not emptying out is very common for most people when flaring. It is rectal inflammation causing him to feel that way,

The embarrassment factor can be difficult but for most of us with UC, this soon passes. We have an inflammatory bowel disease that is a chronic illness. Prior to and just after diagnosis, I had to speak to to many medical professionals about my bowel movements. After all, everyone poops.

Has your son had a look at the website himself? I found it all very difficult it the beginning and the information can be overwhelming but it helps to know as much about the illness. I agree with Gary - it takes time to find out what works. What works for one does not necessarily mean it will work for another, all trial and error.

Stargirl, he has looked at the website. For the first couple of days I think all we both did was google, and read. He told me yesterday that he was tired of reading on here because everything's contradicting....he doesn't know what to believe. That's mostly in regards to diet though. How does one really go about finding out what the trigger foods are....especially during a flare? He's miserable no matter what he eats....which makes him wonder why he's even bothering with cutting things out.

UCandme, I will talk to the GI about recital meds. I've read that they're helpful for some.

"There is no cure for the disease. He will have to take some kind of meds forever,"

No, only if you base yourself on status quo. We never know what tomorrow brings.

When flaring low residue is a good idea. Try to make one change or addition at a time. You will be better able to tell what aggravates his UC and what doesn't.

Dairy, gluten, high fiber, raw vegetable are popular triggers. Gluten you need to give at least three weeks to determine if it bothers him or not. With that being said when in a flare it can be difficult to tell. I can remember simply drinking water had me running to the bathroom.

Do make sure he stays hydrated and eat as much as tolerated to keep up strength.

Helpingmykid96, I can understand why your son is confused about diet. Really, there is a ton of info and it is very complicated and there's no one answer for everyone. But here is one truth - in the midst of his first flare, diet is probably the last place he should be looking for help, except for the low residue approach, which should at least give him some relief from discomfort.

Low residue will give his bowel a bit of a break, but it won't affect the disease process. I'm disappointed that your GI did not prescribe rectal meds. The use of both oral and rectal mesalamine is the best practice for successfully treating UC. Since your GI did prescribe a pretty high dose of prednisone, I would guess that your son's inflammation covers a relatively significant part of his colon?

When you go for your follow-up appointment please ask the GI to explain exactly what he saw, and what the biopsies said. You will want to discuss whether your son's colitis is UC or Crohn's. You will want to know the extent of the inflammation. Please ask for rectal meds. And yes, while your son is flaring, all food is going to hurt.

Hi--I'll throw in my own two cents for what it's worth. And as the cliche goes, your mileage (or your son's mileage) may vary. A lot.

My own situation is that I am an adult (much older than your son--I have two, now adult daughters.) I was diagnosed with UC many years ago--back in the 90's. Once we got a handle on my situation, I was fortunate to have my UC under control up until about 15 months ago when I developed a flare, that I still am combating today--but at least we're making progress--slowly. However, not too long after my initial diagnosis in the 90's, we (my GI doc and me) got it under control with meds like Asacol, along with me figuring out very quickly what made me feel bad, and also with, I assume, lots of good fortune. But those first early days felt were terrible and scary. In my early years, when I got had a flare, it was able to be quickly managed--usually with a course of corticosteroid enemas.

As others have pointed out is that what helps one person may not help your son. What helps your son, may not help me. What foods bother others, may not bother him. That's one reason why you read so many conflicting things on the internet, etc.

His feelings of having to go, spending a lot of time on the toilet, and actually feeling constipated, are common when in a flare. My understanding of the process (and I may not have it exactly correct--I've learned that those on this forum are way more informed than I am) is that when there's inflammation, the swelling and inflammation hit the nerves that tell your brain that you have to move your bowels. Of course, you run to the bathroom, push and strain, which adds inflammation, and, well you get the idea--it becomes a bad cycle. Of course, there's no way of knowing when you get the urge to run to the bathroom when it's the real thing. (Being wrong once can have a pretty bad consequence, needless to say.) Even when you go go, it also feels like you've never "emptied out" and still have more to go.

Hopefully, the pred, asacol, and figuring out the right foods, will deal with the inflammation before too long, and he regains some sense of control of his body and his life. (That will go a long way to help you, as well! :))

As I mentioned, like others here, I'm also a parent. I absolutely understand your stress and how upsetting this is for you. I have found a lot of great info here--and many things that have helped me have a better understanding of some facets of UC. But, I will caution you that many people here are suffering at the extreme end of the UC spectrum. There are also many others--as I was for many years--who have UC that is under control, and are able to function well in their every day lives. Don't lose sight of that!

Thank you all so much for the advice! Kazbern, I have a lot of questions for the GI when we see him. I had no idea what colitis was so I had no idea what to ask him at the time. I will definitely ask about rectal meds. UCandme, I'm going to have him stick to the gluten free diet for a good three weeks to see if it has any effect. Are gluten free breads and pasta ok, or are they still too hard on the intestines? I hate the thought of feeding him something that's hurting him. I'm really just thankful that I still have him at home with me so I can help. If he was off at college or living on his own, I'd be a lot more worried. At least for now, so we can learn about this together and try to figure some things out.

Definitely different for everyone. I felt the same frustration when I first arrived at this site. I didn't know what to believe. After a bit, I figured out what I'm supposed to do is learn how to follow what my body is telling me. I got a lot of ideas to try here. Some worked and some didn't. For example, upping my vitamin d and probiotic intake has definitely helped me. Other diet stuff, not so much. I'm one of the weird ones who can eat a salad with no problem. I do have a hard time with things like broccoli, garlic and nuts. They upset my stomach. Comfort foods worked well for me. When my intestine was throbbing from injury, I spend a lot of nights eating baked potatoes, avocados, scrambled eggs and mac n cheese. I haven't needed to cut out gluten and I'm okay with sugar so long as I don't go nuts with it. I drink tea, but can no longer drink straight coffee...especially the strong stuff. So, yes, we have a lot of different situations on this board. I'm certain he'll (you'll) find a few with very similar situations if you hang around for a bit and share your progress (or lack there of). I thought I was the only one who lost the ability to go when severely inflamed. Though I'm in the minority, I've stumbled across others with similar problems.

Another huge plus to this board is I now have much better conversations with my doctor. I ask about drugs/therapies/approaches I wouldn't have known to ask about before. I'm already informed about drug names and how they are typically introduced. Because of this, I think my doctor takes me more seriously. Sometimes I'm ahead of her when it comes to when we need to be checking liver enzymes and such. We're more of a team than we were in the beginning and I'm certain I'm getting better care because of it.

The situation you described in the beginning, that rushed report on the diagnosis with a quick rundown of what drugs your son would be on, was pretty close to what happened to me. I was still groggy from being put under from my colonoscopy. Later in the day, I wasn't even sure the conversation really happened. My husband was there and verified it did. I told him right then and there, with what I'm reading about this disease and what I'm going to be taking to fight it, I'm done with rushed conversations that involve a bunch of goobligook I don't understand. The diagnosis may be old hat for gastros, but, like you, I'd never heard of it before. If I was only going to have small pockets of time with my doctor, those pockets were going to be packed full of meaningful two-way conversation. It's been a confidence building to learn from those here what things you can, and probably should, push back on.

I hope your son finds relief soon. I do agree a rectal makes sense. I'm assuming you have a follow-up appointment soon to evaluate long term options. Maybe that's when the rectal will be suggested.

I also agree your son will soon lose his shyness about discussing his bathroom habits. I was very private about that kind of thing. Now I'm not. Interestingly, now I can spot those in my circle of friends who are likely dealing with their own issues. I notice things that I didn't notice before...frequent bathroom trips, hands on abdomens, casual references to frequent doctor appointments, avoiding food at parties... Whether or not it's UC, you'll be surprised how many people close to you are struggling with gastric issues that you never realized. I'm having open conversations with friends who I now know are struggling with IBS, ciliac disease, etc. Our friendships are actually better because we can relax with one another and not stress out about, gasp, going on a road trip and needing to pull off the highway multiple times for pit stops. Needing to get the check and a to-go box right after settling into a restaurant requires no explanation.

I will answer your questions with my experience. Keep in mind that everybody is different.

So, my questions...How long does a flare generally last?
- 2 years if not more

Will the meds he's on make the flare go away or are they just to help the symptoms?
- goal is remission which is a symptom-free time. The condition is not curable.

When should he start feeling some relief from the meds?
- depends. Pred will give quick relief however he should not stay on it for long. Give him calcium & vitamin D because Pred will eat up his bones

When this flare does finally pass, will his diet determine whether he flares again?
- everybody is different. Diet makes a difference for some, and none whatsoever in others.

He's struggling to find things to eat. He's vegetarian and has now cut out all dairy, gluten and processed sugar.
- I was vegetarian too and I decided to eat meat again for my health.

Also, he's been on the meds for two days now and has not noticed a change. How long before he starts feeling some relief?
- as I said it can take a few days.

Hope he feels better soon.

Sorry to hear about your son. I was in the same situation 3yrs back- struck,scared ,confused and overwhelmed!!
Learned a lot from this forum and knowledgeable people here.
You got very good advice's to move on...

My advice- By all means do your very best to attain remission. Sometimes meds alone wont help to gain remission. Some diet restrictions(VARIES WITH PEOPLE), supplements and may be a life style change might be needed. Once attained be cautious not to break it.The longer the remission the better the life.

Try to reduce all stress factors for him. If possible/workable take a break from his studies.(DD did this and it helped tremendously)

For many, while in perdnisone no symptoms persist- So its natural to think everything is back to normal.
Pay close attention to healing during this period.(As perdnisone wont heal the ulcers and inflammation)

While in perdnisone- try to avoid all processed/packaged foods, sugar and milk.(As these are all inflammatory foods)
Go with home cooked foods-Check into urban poser, All against grains websites to get recipes(easy,quick,healthy and tasty)

For snacks/baked goods,you can get quality stuffs from Wellbee's (Previously Digestive wellness).You can order through their website. As far as I know, their products are gluten,sugar,grain and preservative free.

Home made chicken soup has lots of healing properties. Also try to get sunlight.

In our case, even though DD got so much better with SCD diet, lialda and lifetsyle changes, fecal transplant brought her back to perfect Pre-UC state.

Your son being 18, chances are he won't be serious with this disease. It would greatly help if you could get involve with your son's diet.

All the very best..
Prayers..