new to the circle...

Natalie - posted on 12/01/2008 ( 9 moms have responded )

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I just wanted to introduce myself and say hello...

My 12 year old son was Dx with Crohn's and Spondyloarthopathy almost two years ago... It has been a hard fought battle, but he has been in remission now for 11 months. We still take each day as is comes and celebrate the "normality" of life...

Looking forward to getting to know all of you, and being able to share the joys and struggels that only another IBD mom knows.

Natalie

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User - posted on 04/27/2009

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Hi Natalie. My 8-year-old daughter was diagnosed in August of last year and had two hospitalizations one right after another. It was a long and difficult summer, but she has been on Remicade since October and has been in remission ever since. It has been a wonder drug for her.
I have to laugh at Amy's post about asking about poop - I ask my daughter all the time and one of these days she's probably going to smack me! LOLOL!

Wendy - posted on 04/02/2009

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Hi Lisa, I am Wendy- who wrote just above you...wow, so young your son was to begin this battle!! My son Robby also has stricturizing Crohn's for which he had surgery to remove a foot of bowel. The small bowel above the stricture was removed due to disease also. As I wrote above and in another post about MAP. Robby has been on every med minus methotrexate (due to the dangers) and Humira- because we chose a new path that has proved successful. Please read my post and I would be glad to answer any questions. This treatment for MAP is slow in gaining acceptance in the medical community, but it is worth trying! My son is on RMAT (3 antibiotics and Prevacid only). No more immunosuppressives or anti-inflammatories!

Lisa - posted on 04/02/2009

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Hi, I thought I would introduce myself. I am Lisa, I have three sons, the oldest of which is 12. He was diagnosed with Crohn's when he was six, but he had his first flare when he was a year old. He is currently on Sulphasalazine, azathioprine, omeprazole and prednisalone- the evil drug he calls it. he had his first surgery two weeks ago to resect his bowel after it was found he had a stricture. It will be nice to talk to other's who know what I am going on about!

Lisa - posted on 04/02/2009

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Hi, I thought I would introduce myself. I am Lisa, I have three sons, the oldest of which is 12. He was diagnosed with Crohn's when he was six, but he had his first flare when he was a year old. He is currently on Sulphasalazine, azathioprine, omeprazole and prednisalone- the evil drug he calls it. he had his first surgery two weeks ago to resect his bowel after it was found he had a stricture. It will be nice to talk to other's who know what I am going on about!

Wendy - posted on 03/31/2009

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Hi Natalie- I met Amy Lockhart because she was on her way to see the same doctor we did in Texas. I am a retired R.N.,my son is 22 and has had Crohn's almost 10 years. Please read my story and how RMAT treatment is helping when every other med was not. The group site is "in search of new treatments for Crohn's". My son has been on RMAT treatment for almost 1 year and is in remission!

Tandyfun - posted on 12/21/2008

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Welcome Natalie. My daughter was 10 when she was diagnosed with Crohn's. I understand about the battle! We are still fighting it. Remicade has not worked for her. They even double dosed her Remicade and it did nothing. She was still bleeding 3 days later. Her hemoglobin as of Friday is only 75. They are supposed to be doing a transfusion to help her hemoglobin. But for some reason they seem to not want to do anything, probably because of the holidays. At least that's what I think. What kid wants to be in the hospital over Christams lol Next step is Humira or at least that's what they keep telling me.



That's interesting to know about Spondyloarthopathy. Sami's joints get extremely bad when she's going into a flare. Is unable to get out of bed, or even get to the bathroom without being carried. She was diagnosed with Arthritis at the age of 4.



Has anyone dealt with fistulas? She has a vaginal fistula. It's been painful for her and uncomfortable for me as I have to put polysporin on it. She refuses to do it.



I am looking into stem cell transplants and to see if it is even possible here. I have heard talk about people having success of this transplant but I don't know the severity of their disease.



Have either of your kids had a bone density scan done? Sami had one done and is at high risk for fractures so now they have cut out alot of sports for her. Like skating, rollerblading which happen to be her favourite things to do. It's very frustrating!



I hope everyone is having a good weekend!

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"spiky" poop! I get it! We have "applesauce", "pudding" and "potatoe" varieties ;) Had Karis' check up last week...not great. She has two perianal fissures that have cropped up in the last few weeks and are really bothersome. I can't imagine, but they say it's like having a cheese grater go through your behind. UGH!



Anyway, the Dr. wants to put her on 6MP which is an immunosuppressant. I want to get a second opinion. In one breath they say she has a "moderate" case, but in the next they want to hit her with cancer therapy drugs! I just don't get it!



Have you heard anything about the mycobacterium theories related to Crohn's? I'd like to find a doctor that is looking at diet as well as drugs for therapy. Is your son on a restrictive diet?

Natalie - posted on 12/03/2008

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Hi Amy! It is nice to meet you. Wish it was on a different board, but here we are.

When did you first notice symptoms with your Daughter? My son was 2 when he began to have arthitic symptoms.

Spondyloarthopathy is a sister disease to Crohn's. It is also an autoimmune disease. Tyler's flares always start with pain in joints, when it gets to the point that he can hardly walk we know that we are in big trouble....His last big flare was almost a year ago. He had another pill cam done, and his guts were a mess. He is now on Remicade and that has been our miracle drug. Last month he was doing to much physical activity and started to flare. We were able to move the Remicade up and that smothered it, but there is always that nagging feeling of whats next....

What meds is your daughter taking? Ty in on Pentasa, Prevacid, Imuran, and Remicade.

Even though he has been in remission, we still have our daily "crappy" conversation. Sometimes the boys (my youngest also has had some problems) will leave the room and I will just laugh. To be a fly on the wall would be hilarous. We have developed our own poop dictionary. There has been a couple of times when I have used our terminology at the dr. office... their faces go blank, and they say something like "excuse me, but did you say spiky poop" Yep, that is what I said..... at least we can get some good laughs out of it

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Hi, Natalie! My daughter is 12 also, and was dignosed with Crohn's 6 months ago. I have never heard of Spondyloarthopathy...what is that?



No one can understand the struggles of families with children who have Crohn's like another family in the same boat! Right now, Karis is in clinical remission, but I always wonder what the trigger might be to flare things up again.



Life will never be the same again. Poor thing, I am always asking her about her "poop"!

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