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Ulcerative ColitisHello,

My son is 25 and was diagnosed in 2006. we went thru 2 doctors before all heck broke loose and he ended up in a Maryland hospital for 3 weeks on Jan 26, 2008. After managing to heal a torn esophogus (a result of extreme pain induced vomiting), and then 2 blood transfusions from a major blood loss in the hospital, the surgeon came to talk to us about complete removal of his colon. The attending doctor happened to be the director of the Board of Gastroenterology for the Hospital. He advised my son that he could try Remicade to see if he could get things under control so as to avoid the surgery at such a young age.  Of course, he opted for it!  On Feb, 7, 2008 he was released from the hospital. Slowly, he gained back the 40 pounds he lost during that time, and with about 6 weeks of recuperation and a second Remicade infusion he was able to go back to his part time job. He has had remicade every 7 weeks since then and went to the gym almost daily and ate just about anything  he wanted .  He had his life back with few "bumps" and much happiness and relief. Until January 22nd, 2009. He began a flare two days before his infusion and after the infusion he just kept getting worse. On February 4th he had a Flex sig and the doctor said the disease was active again.  He gave him cortisoid enemas to use for 2 weeks...no change..on Feb 24th he decided to give him a Double dose (900mg) of Remicade.  It has been 8 days now and there is still no change. He is very depressed and my anxiety level for him, is off the charts.  All I can think about is  "The Surgery", not only how it will affect him physically, but mentally  as well.

Do any caregivers out there have someone with UC my sons age?

How are you dealing with the heart-sinking emotions that the Remicade is failing? And If your loved one has had the surgery how are you and that person dealing with it?

Any input would be appreciated.

Thanks,

Karen

 Reply posted for HelenasMom.

hi... I read your post and I was curious if would be  able to shares some food ideas for your child. I have a 10 year old daughter and Im feeling at wits ends with ideas to keep her motivated with foods taht she can eat!Thank you

Marisela

email:maristearn@bellsouth.net

 Reply posted for Jacksons Mom.

Hi,

I saw your post on CCFA.org. My son was diagnosed at 3 1/2 
with UC and now just turned 4. So we are new to all of this 
and yet have had - colonoscopies, steriods, 6mp, Pentasa, 
Entocort, flare-ups only since Feb.09. Our GI Ped. wants to 
start Remicade on my son, but I am too afraid of that right 
now with all I read about it. The 6 mp is scary enough. How 
is your son doing and what medications is he on? The 
prednisone really works, but my son turns into a monster. We 
had 2 rounds of that so far. He seems to have mild flare-ups 
while on the 6mp, pentasa and entocort with 2-3 bowel 
movements a day. I don't see a need to resort to remicade at 
this point. The 6mp takes awhile to get into his system, so 
I rather just wait it out and see if it will work. I'd love 
to hear about your son and what you/Drs are doing for him. 

Sincerely, Wendy (mom to Carter- 4yrs old)

 Reply posted for Jacksons Mom.

Dear Michelle,

My son too was diagnosed a year ago at the age of 4 with UC, and your story is very much like ours. I too have not found any one or any doctor for that matter that has delt with a child this young to have this disease.  If you would like to talk to me, please email me at scottijohns@hotmail.com and I will give you my #.  

I really look forward to talking with you,

Sincerely,

Scotti

 Reply posted for scotti johnson.

My son, Jackson, was also diagnosed last year at the age of four with ulcerative colitis.  I have had a really hard time emotionally for my son and have had a difficult time finding other parents who have children diagnosed at such a young age.  No age is a good age, my son was just four and I can't comprehend it.  I am just looking for other parents who have very young children fighting this fight, just like we are.  -Michelle

 Reply posted for mysonsmom.

My daughter is 21 and is dealing with ulcerative colitis. That was her Christmas Gift. This is her mom and am heartbroken. She lost 35pds. was totally dehydrated, and had 2 blood transfusions. She was very ill and are blessed to have her with us. She is on prednizone and asacol. It helped for 4 months, but she has lost ALOT of her hair. I don't understand. Isn't colitis enough to deal with?Now hair lose.What next? She is a college student,has dreams to becoming a elementery teacher.She is a wonderful daughter.I keep asking why her? The embarassment,watching her eat next to nothing cause she is having a flair up. to see her depressed,well this is so unfair to All who have to live with this. If I could I would take her UC in a heartbeat.

I feel for you all,and will keep you in my prayers.

 Reply posted for mysonsmom.

Hi Karen,

 Reply posted for scotti johnson.

Hi Scotti,

I have been so preoccupied with Bobby I havent been looking at the messages!   Im glad you found the shakes for your son. Maintaining their weight is so important.  Those flares must be SO hard to endure for such a young child. And I know how it hurts our hearts to feel so helpless!  Bobby has been put back on 60mg a day of Prednisone and once a week Actonel to combat the bone loss.  This is the second week and his system is finally starting to calm down a bit. He still is not confident enough to go back to work though. We have an appointment with the Doctor on Monday to discuss the"exit strategy" from the Prednisone. This relief is only temporary unless he can regain control with another dose of Remicade now that the Prednisone has kicked in. We'll see. You know, since I will be there on Monday, if you would like to tell me what city you live in I will be happy to see if they can recommend a doctor in your area.  My e mail: K32155@aol.com

I have come to find out that researching and networking is amazingly helpful!  Just let me know.

Have a beautiful day.  My best to you both.

Karen

 Reply posted for mysonsmom.

Hi Karen,

I am so glad to find this support group.  My son Seth, was 4 when he was diagnosed.  He has been hospitalized 3 times, but we haven't had to have any blood tranfusions.  I'm having a hard time finding a doctor that has treated a patient this young.  We are traveling 4 hours to his doctor now, and I am not very satisfied.  They are not giving us much information at all.  Seth has alot of flare ups and we are still, I guess will always be trying to figure out what triggers them. He is currently on Colozal for inflimmation, and has to take prednizone from time to time.  I am concerned about the number of flare ups that he has.  We didn't know dairy may cause flare ups, so I will start eliminating that from his diet.  All we were told was to keep him on a low fat, low fiber diet.  I do give him pediasure shakes to help with his weight. 

My thoughts and prayers are with you and your family.  Keep me posted about thing that may be helpful and I will do the same. 

 Scotti

 Reply posted for mysonsmom.

My daughter, age 11, was diagnosed with UC a year and a half ago. Nothing worked-- Prednisone (first oral, then HUGE amounts via IV), Asacol, Colazal, Remicade, Tacrolimus (well, she reacted so badly to that the she was only on it for 2 days), various enemas, NG tube,  I've lost count of it all. We tried the Specific Carb Diet and it seemed to help but only up to a point, and she rebelled against it and then was hospitalized as the flare worsened and we stopped the diet as she had too many opther things to worry about. She's currently on Imuran but to be honest, we don't know for sure if that's what's been helping. It takes Imuran up to 12 weeks to reach potency, but she started improving within a month of starting the Imuran and well before her dosage got stepped to working levels--in fact, she began to improve immediately after she started having acupuncture 3 times a week .
I have no idea why it works. I'm still not really sure I -BELIEVE- it works. But the kid who walked into that first session is not the same kid who walked out. She's down to one session a week now, and if she misses it we can tell.
The last time we saw her GI (he no longer brings up surgery every time he sees us), he said she was doing better than he thought she would and he didn't know why.
So, it may be worth trying. This is our second acupuncturist, we tried this the first time last year and she didn't connect with the practitioner and it did nothing. We gave up and only tried it again because months later, her primary care physician suggested we try this particular practice. He said, and I agree, that it was at least worth trying....

Good luck!

 Reply posted for mysonsmom.

I was hoping the probiotic would help.  I did hear about coconut and how helpful it is.  I bought coconut milk yogurt at Whole Foods and my daughter makes a smoothie in the morning with it.  She puts in the coconut milk yogurt, banana, frozen fruit and adds soy milk (now she is starting to add juice instead and it tastes more like Jamba Juice).  I tried to get her to eat coconut flakes and actual cut up coconut but she won't.  She is very picky (I think it's her age, 18).  I hope your son starts feeling better.  My daughter was on 40mg of Pred. 2 years ago.  She had some symptoms but they went away as her dosage decreased.  She had acne, moodiness and had lots of energy but it did help her with her symptoms.  I hope it helps your son.  Please let us know how he is doing. 

 Reply posted for mysonsmom.

I was hoping the probiotic would help.  I did hear about coconut and how helpful it is.  I bought coconut milk yogurt at Whole Foods and my daughter makes a smoothie in the morning with it.  She puts in the coconut milk yogurt, banana, frozen fruit and adds soy milk (now she is starting to add juice instead and it tastes more like Jamba Juice).  I tried to get her to eat coconut flakes and actual cut up coconut but she won't.  She is very picky (I think it's her age, 18).  I hope your son starts feeling better.  My daughter was on 40mg of Pred. 2 years ago.  She had some symptoms but they went away as her dosage decreased.  She had acne, moodiness and had lots of energy but it did help her with her symptoms.  I hope it helps your son.  Please let us know how he is doing.

 Reply posted for mysonsmom.

I was hoping the probiotic would help.  I did hear about coconut and how helpful it is.  I bought coconut milk yogurt at Whole Foods and my daughter makes a smoothie in the morning with it.  She puts in the coconut milk yogurt, banana, frozen fruit and adds soy milk (now she is starting to add juice instead and it tastes more like Jamba Juice).  I tried to get her to eat coconut flakes and actual cut up coconut but she won't.  She is very picky (I think it's her age, 18).  I hope your son starts feeling better.  My daughter was on 40mg of Pred. 2 years ago.  She had some symptoms but they went away as her dosage decreased.  She had acne, moodiness and had lots of energy but it did help her with her symptoms.  I hope it helps your son.  Please let us know how he is doing.

 Reply posted for mpace.

Oh, I forgot.  There is a probiotic called VSL 3 which we are trying today. 

 Reply posted for mysonsmom.

I don't know if my son's story will help your son.  I hope it does.  My son was diagnosed with Crohn's disease last year (I think Crohns is similar to UC)  We found that he got a lot of relief through diet.  He went off all gluten and dairy.  This helped.  I also had his stools re-tested.  In this second round of testing they found H-Pylori.  After a round of anitbiotics, he felt great.  He has been doing great (without any drugs) for 6 months.  Right now, he has had another flare-up.  I will have his stool re-tested to see if there is any virus or bacteria affecting him.  My GI doctor also suggested I have him fully tested for food and environmental allergies.  He said that allergies as well as the flu (which he had last week) could have caused his flare-up.  I know it takes a lot of work and guessing, but I have had pretty good luck (if that even exists with this disease) with trying to find out what is causing my son's stomach pain. 

My thoughts and prayers are with you.

 Reply posted for scotti johnson.

Hi Scotti,

Wow, 5 years old. He's so young, poor baby! I really feel for you and your family. It is heartbraking enough to see my 25 year old go through this disease, I can't IMAGINE the pain I would feel if my son were only 5years old. When was he diagnosed?  What is the doctor doing for him?

I can tell you one thing..from what I have been reading about the extreme weight loss in young children and how it basically stunts their growth,(if your son has lost a lot of weight), you might ask your doctor if you can give your son "shakes" made with weightgainer from the Vitamin shoppe, or GNC etc. 

My oldest son is a Bodybuilder/Personal trainer and he has his clients that need to gain weight, choose a weightgainer shake flavor that they like, and add milk, a banana, and Pnut butter.  Drink it as the last meal of the day before bedtime. You will gain.  He advised Bobby to drink these shakes last year after he lost 40 pounds in the hospital for 3 weeks.  Bob had to regain the weight before he could resume his normal schedule, and he did it with the shakes. (I got him Lactaid instead of regular milk).  He said they tasted really good! (That always helps!) Of Course, we ALWAYS ask the Doctor if it is okay before he trys anything new. Ensure is also a staple at our house for  when he doesn't want to eat.

Of course, I have no idea how bad your sons disease is at this point so maybe none of this pertains to him. If you are considering Remicade for him, Look into the REMISTART Program. They Partially fund the infusions after insurance pays their part. I can e mail you with the number to call if you are interested.

As I research for my son, I will keep yours in mind in case I come across anything you can benefit from for your little guy!

My Best,

Karen 

 Reply posted for EZ.

No, he isn't seeing any change unfortunately.  I think his flare is just too far gone right now. I just spoke to his doctor this morning and he is putting Bobby back on 60MG prednisone a day along with Actonel to try to protect his bones as he already has the Osteopenia from the original bout. Maybe if the Prednisone works its magic, then the probiotoc will be more helpful in his maintenance phase. We won't give up on it just yet! :)

I was reading about the positive properties of coconut oil and coconut milk, as well as the regular flaked coconut and I found it all at my grocery store yesterday. I am going to find recipes to incorporate it into his diet also. If this disease does anything...it sure does end up educating you!! I feel like I can't learn enough to try and help him..I am always reading something.

How is your daughter doing?

 Reply posted for mysonsmom.

Is your son seeing any difference from the probiotic?  I know it's only been a few days.  I hope it works for him.  Please let me know.

 Reply posted for mysonsmom.

I am so sorry to hear about your sons disease.  We are in a simailr situation although my son just had his 5th birthday. If there is anything that may be helpful to you and your family that I discover, I will let you know.  Please do the same for us. My email is scottijohns@hotmail.com

Sincerely,

Scotti Johnson

 Reply posted for mysonsmom.

I am so sorry to hear about your sons disease.  We are in a simailr situation although my son just had his 5th birthday. If there is anything that may be helpful to you and your family that I discover, I will let you know.  Please do the same for us. My email is scottijohns@hotmail.com

Sincerely,

Scotti Johnson

 Reply posted for mysonsmom.

I am so sorry to hear about your sons disease.  We are in a simailr situation although my son just had his 5th birthday. If there is anything that may be helpful to you and your family that I discover, I will let you know.  Please do the same for us. My email is scottijohns@hotmail.com

Sincerely,

Scotti Johnson

 Reply posted for EZ.

 

We spoke to the nurse who relayed the info to the doctor while he is out of town..he sid the Probiotic was fine to try.  I acutally bought it for him today. He took his first capsule tonight.  The doctor said that he will probably put Bob back on Prednisone along with the Remicade for a while to see if he can stabilize him that way. When he was in the hospital last year for 3 weeks they had him on the prednisone along with the Remicade (and many other things!), and he went into a pretty good remission for almost a year.  So maybe the doctor is thinking if Bob takes the Prednisone again this time it might just work a second time to pull him out of this HUGE Flare.  I hope that this Probiotic offers him some relief.

My heart goes out to your daughter..wow, those tests are SO Grueling! I feel so sorry for her.  I sure do hope she is feeling better soon.

It is So hard to have to see our children,(regardless f their ages) go through such agony and us be so helpless that there is nothing we can do except research and try different things and be supportive.  I hope your daughters  doctor was right..a cure in 10 years would be wonderful..but secretly I hope for a miracle overnight!

 Reply posted for EZ.

p.s.  my daughter's first GI doctor told her he felt there will be a cure for IBD in 10 years. 

 Reply posted for mysonsmom.

What did your son's doctor say about the probiotic?  It works so well for my daughter.  It has 50 billion good bacteria.  My brother had UC.  He got it when he was 33.  My daughter got it at 16.  She was on ampicyllin and menecyclene (I know I'm spelling those wrong) for almost 3 years for her acne. (my son was on the same meds for almost 3 years also but didn't develope IBD) When she stopped the acne medicine, a week later she got UC symptoms.  The doctor said there's usually a "trigger" that starts UC.  I took my daughter today for a CT Enterography which she said was one of the "worst" experiences of her life.  I didn't realize she'd have to drink 3 bottles (about the size of a water bottle) of barium or have an IV.  The test itself was very fast but afterward she felt like she was going to throw up, poop, pee all at the same time.  They did put 2 pills in her barium which were for nausea.  I feel so awful she has to go through all this.  She is supposed to take that Lactulose Hydrogen Breath Test before her coloscopy next month but she doesn't want to stop her probiotic for 2 weeks prior to the breath test since she feels so good on it right now. 

 Reply posted for EZ.

Thank you for your response, I really appreciate your input.  My son will be talking to his doctor today and I will tell him to mention the Ultimate Flora Critical Care 50 Billion that your daughter takes. He was taking Activia, but as he has not gotten better, he stopped just because you never know what is making it worse sometimes!  Nothing seems to be making a difference lately.  When the Remicade was working he was able to eat a normal diet and nothing bothered him. Now, everything he eats runs through him within 1-2 hours.

Yes, he just began to go on this website last week. I am hoping he connects with someone his age that he can relate to.

I am glad to hear that the things your daughter is doing are working for her. I wonder, is there a history in your family of IBD? There is nothing like that in mine so we are constantly wondering what caused it. I hope someone finds the cure pretty soon so all of our kids (and everyone else), can have their lives back with some semblance of normalcy.

Take care and please give your daughter my very best.

 Reply posted for mysonsmom.

My daughter was diagnosed with UC 2 years ago when she was 16.  I know what you are going through.  She has been on many meds.  Right now she is on Azathioprine and Lialda plus Women's One a Day and a probiotic called Ultimate Flora Critical Care 50 Billion which has helped her so much.  She tried Canasa and Cortifoam but they didn't help.  We just went for another opinion and this is her 4th doctor.  The doctor actually recommends the probiotic she is taking.  He said lots of UC patients have "bacterial overgrowth."  He wants her to take a test called Lactulose Hydrogen Breath Test to test for it but she'd have to stop the probiotic for 2 weeks and she doesn't want to do it because this has been the only thing that has helped her.  Her 3rd doctor was recommending Remicade but we didn't want it.  I asked that doctor if Remicade stopped working what would happen.  She said surgery is the last resort.  She could try "trials" first before surgery since she is now 18.  That may be an option for your son also.  I'd first want to try probiotics.  My daughter also has tried to change her diet.  I bought that Specific Carbohydrate Diet book but we modify it a bit.  She just tries to cut added sugars and foods with all those additives also limit dairy and wheat.   Also does he ever go on this website or attend any ccfa support groups?  That may help also.  Please let us know how your son is doing.