Anyone here have ulcerative colitis?

jojocoFebruary 8, 2010

I know I should post on the health board, but you guys are like family here. Anyway, my 16 year old son was just diagnosed with this. He has been in the hospital for almost a week, and it is a huge relief to get a diagnosis. His dr is giving us lots of information, but it would be nice to hear from anyone who deals with this on an ongoing basis.



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My dad has it, and I have it's milder cousin, IBS. A maddening condition because it waxes and wanes on its own little path. What helps to relieve it one flare up doesn't the next. There is a fantastic organization, the Crohns Colitis Foundation with lots of resources. Overall, I would say the hardest thing your son is going to have to deal with is that he is no longer Superman. He has a touchy constitution and has to watch his health regime--eat right, get a enough rest, practice stress relief techniques, learn coping strategies for having a chronic illness. And despite what people say, it is not about what you eat or your stress, although managing those things can help lessen your symptoms and lessen your suffering. It is an autoimmune condition. Keeping yourself stress free and healthy is good for the immune system, no matter how you look at it, but not always possible. We do what we can. It is also related to seratonin. I have migranes, another seratonin related condition, which is also chronic, so I definately can related to what your son is going through. Like I said, he needs to just realize that this is part of being human, he won't always have flare ups, it will pass and he will have many, many good days. And when he has a bad day, he will just have to take it easy and people will just have to understand. Then he can go back gangbusters on the good days. If you try to drug yourself into "normalcy" with these chronic conditions, my experience has been that you just drag out the hard times all that much longer. At least that's the way it is with my migranes. I can drug myself into a three day migrane to try and function, (which I can only manage to do marginally) or take a day off work and be back 100% the next day. Same with my dad, he was ill on steroids for 10 years, absolutely miserable, until he accepted his disease, went off steroids, adjusted his lifestyle and has been feeling great ever since. He also ended up with steroid related degeneration, so I would avoid that route if I possibly could with your son. My friend was taking steroids for asthma for years (which actually ended up being misdiagnosed and who knows how many of her subsequent health problems were a result of the steroids), and has had nothing but grief the past five years from fallout from that. I'm not saying steroids haven't saved some people's lives with these chronic conditions, but IMHO the best route is to try holistic management of a chronic condition first. My friend didn't even HAVE asthma, which shows you how the medical field can get things VERY WRONG some times. You need to educate yourself and be your own advocate. Your son is not alone!

Just from my own experience, a mild diet low on the rough fiber (from wheat bran and vegetable and fruit peels) and low on dairy, but including soluable fiber (from things like applesauce, barley and oatmeal) is helpful. Some people are sensitive to onions, peppers and cruciferous vegetables, but if your son is not, then don't worry about that. Doctors say stay away from lots of fat, lots of sugar and caffeine and eat smaller meals spread out througout the day to keep from hyperstimulating the digestive tract. But that's good advice for anyone. Again, your son will just have to watch himself. He doesn't have an iron gut, but then no one should actually act like they do, although a lot of us do.

My friend who has it swears by herbs, (and she's a scientist), but your mileage may vary. Everyone is unique in how they respond to various natural treatments. That's one thing you learn with a chronic disease, you have to find your own unique combination of coping techniques that work for you. There are lots of resources out there. Approach all with an open mind but a healthy dose of skepticism. It has been my experienc that a LOT of doctors know nothing about treating chronic diseases through prevention and lifestyle managment. They only know to prescribe this or that pill which is what they get from the pharmaceutical companies. I'm not totally dissing pills, but bear in mind that these pills all have side effects, many of which are NOT reported on. For example, my dad was on cholesterol lowering medication for TWO YEARS which gave him chronic lung congestion. He was on round after round of antibiotics and claimed to have a constant cold. Well FINALLY after going to many doctors, one realized it was a little publicized side effect from the medication. Same goes for my friend with "asthma," she actually had a rare swelling of the trachea, and 10 years of asthma treatment, (which is a bronchial condition), treatment for swollen vocal chords, etc. did nothing for her. Eventually x-rays revealed the problem was in the trachea, which is between the vocal chords and bronchial tubes, which had not been looked at all that time. I'm mentioning this because I really think that my dad got some BAD advice early on in his battle with ulcerative colitis and I would urge you to not take the kool aide totally with all these drugs the doctors push. Find out some alternatives from people who are also scientific in their approach, knowledeable, flexible and skeptical, but aren't totally under the sway of the drug companies and the billions they pump into research. Good information takes a little rooting around to find. There's probably an active Chrons Colitis group in your area to join.

Here is a link that might be useful: Chrons Colitis Foundation

    Bookmark   February 8, 2010 at 11:45AM
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My oldest granddaughter has it. When it was discovered at age 5, she could not eat bacon, drink milk, nothing fried, no nuts, no strawberries or fruit with tiny seeds.
She is 19 now and can eat bacon and drink milk, but she still cannot do nuts or seeds, and never has fried foods.
She went through a lot when she was little (think always needing extra underwear at school because of inability to control sudden accidents with all the other kids laughing at her cause she "poops" her pants)
She is so much better now, and can eat fairly normally, just avoiding fried and seeds and nuts.
(She used to cry cause she wanted to taste a strawberry. It just killed me.)

    Bookmark   February 8, 2010 at 11:45AM
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My 33yo son was diagnosed with it when he was 28, after a hospitalization. He takes meds to control it but otherwise pays no attention to his diet with no ill effects. Stress, however, can send him into a very bloody, painful time, thus far about two bouts a year. His gi doc says dietary restrictions would not help his case.

I'm sorry your son has to go through this, but he'll be fine once he adjusts. Good luck to you all.

    Bookmark   February 8, 2010 at 11:17PM
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My SIL had it but had the reconstructive surgery about 14 years ago. Before that, she had to take lots of steroids to control it which wreaked havoc with her bones. Just being pregnant (her son is now 12) fractured her back because her bones were so brittle. I know they've come a long way in treatment now and her surgery as far as her condition was a success. She can pretty much eat what she wants and hasn't had any major problems except for the damage from the steroids.


    Bookmark   February 9, 2010 at 9:05AM
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Oh geez, Jo, I'm sorry to hear your son has to deal with that.

Amanda has diverticulitis and has had a couple of emergency room visits and hospital stays. Like other similar issues, she's learned what she can and cannot eat. She's OK with strawberries and blueberries, but not raspberries. Corn will send her to the hospital, every time.

As your son's system recovers and he discovered what his own personal digestive triggers are, he'll feel better. I hope it's fast!

Hey, and he does have a mother that cooks, it'll be much better for his system when it all gets figured out and he starts eating what is good for HIM.

Hugs and prayers to both of you.


    Bookmark   February 9, 2010 at 3:09PM
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Thanks guys for the good advise and well wishes. We're working our way through this and throwing out all the advice that came via the nutritionist. She okayed things that really aren't okay right now, during a "flare" (ie, acute diarrhea). He keeps asking me if things are okay, like baked potato chips. I finally told him no, nothing is okay for a few days except rice, mashed potatoes (no milk though), scrambled eggs, jello and liquids. Right now, no wheat, no corn, nothing spicy. We'll definitely be looking at ways to control this with as little meds as possible, but right now, we need the cortisone to control the inflammation. Believe me, I looked into other options, but he has had 6 transfusions and we needed the big guns. His dr. plans on tapering the prednisone starting on the 18th.
Please keep the information coming.

    Bookmark   February 9, 2010 at 3:19PM
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Wow. What a whammy for a teen boy. My son had irritable bowel syndrome as a toddler. Thankfully removing all dairy from his diet for many years solved the problem. He still doesn't consume much in the way of dairy as he never got in the habit.

I'm sure you will find healthy ways to manage his condition.

"It has been my experience that a LOT of doctors know nothing about treating chronic diseases through prevention and lifestyle management. They only know to prescribe this or that pill which is what they get from the pharmaceutical companies." Ditto. This my experience, too. But when you need the drugs in crisis situations, they are truly blessings.

    Bookmark   February 9, 2010 at 4:01PM
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Jo, I'm so sorry about your son. My niece was diagnosed with Crohn's when she was 17. She's 51 now.

Thank goodness he's got you to get him off to a good start in managing a life-long chronic disease.

For my niece, in addition to the diet restrictions, stress management has been important. Letting herself get over tired has sent her to the hospital more than a slip-up in diet. She's been on/off steroids as the need arises but has managed to avoid surgeries. Honestly though...she been hospitalized at least a dozen times for acute episodes. It took her about a decade to accept that she had to make permanent commitments to her health. During her 20s it seemed like she was always very ill. Then, after a horrible flare-up after a messy divorce she made the decision to take charge of what she can control & her life has improved tremendously.

The next few months will be a lot of trial/error but you'll get it worked out. I would suggest you get your DS involved with his meal preparations so he's able to fend for himself when he leaves home for college & life on his own. Hard stuff for a teenage boy just wanting to gobble down a large pizza with his friends.

I'm so glad you've got a diagnosis & are moving forward. How scary not knowing what was wrong! Hopefully, he's starting to feel better.


    Bookmark   February 9, 2010 at 4:02PM
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If he's in an accute phase, then absolutely he needs meds to get the inflammation down. I didn't mean my rant to be against the medications. It's just that my dad wanted a pill that would make it all go away and unfortunately there just isn't one. Everyone has a different constitution and so he'll have to find his own way to the best overall treatment. My only advice is to keep going to doctors until you find a good one who respects that process. Sounds like you have found one. And yes, tell him that those of us who have been through this can tell him that he will get through it, that it will die down. It happened with my dad, it happened with my friend, it happened with the folks mentioned above and it will happen for him. He'll get a handle on it!

My dad was diagnosed in his mid 50's. His disease started after he had surgery for an inflamed obstruction of his colon. He had diverticulitus, got an obstruction, refused to go to the doctor until he had to be immediately checked in for emergency surgery since his blockage was about to rupture and he could have gotten peritonitis. He had to have a section of his colon removed. Then, when they reconnected his colon, he developed the ulcerative colitis. This was a man who had been a type A person all his life with the constitution of a horse most of the time. It was very hard for him to adjust emotionally to not being in "control" of his body anymore. I would imagine that would be the hardest thing for a 16 year old male to adjust to, all of a sudden at an age where you tend to think and feel invincible, to get a tap on the shoulder, NOPE. But we all need to learn the lesson that we are not invincible at some time in our lives, coping successfully with something like this gives us compassion for other people, and true strength of character. It took him a while, but my dad finally came to terms with his disease, as I have mentioned, and has done relatively well afterwards. His inflammation eventually went down.

Hopefully eventually your son can meet some other kids his age who have gone through it. All I know is what little old lady me has gone through and what my dad went through when he was my age, and my colleague of a similar age. But anyway, hope it helps your son to know he is not alone.

    Bookmark   February 9, 2010 at 4:47PM
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Hello my name Isabella and I am 11 and my dad has had this disease for 2 years. I always cry everytime I hear him in the bathroom, his cries and th blood I feel so bad and it's really hard( I'm crying now) anyone know what I'm going through?

    Bookmark   January 2, 2011 at 10:40PM
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