As a mother of a 21 yr old daughter who was diagnosed with crohns about 6 yrs ago, its been difficult to watch my child suffer, and live a life where shes tied to a bathroom, never getting an entire nights sleep, because of multiple trips to the bathroom. Many hospitalizations, surgeries, scans & other tests. On very harsh meds that have done absolutely no good to control or lessen her symptoms... shes been on humira for approx 8wks now, with no improvement. I continue hoping and praying daily for a miracle for her & some sort of normalcy in her life. Sadly we havent yet seen that. They just added a new med, another immuno suppresant and tonight shes spiked a fever of 103. Im also a nurse, I do my best to be her advocate and support person, but sometimes its just down right depressing to see no improvements in her condition. Has anyone had positive results with humira? If so how long did it take to see the improvements?
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Soo difficult watching my child suffer
- Thread starter nicolesmom
- Start date
nogutsnoglory
Moderator
I can't imagine how hard it must be for you. I know my own parents are also heartbroken and in pain over my problems.
Humira should definitely start showing signs of improvement and if it doesn't by 3 months its usually discontinued. I'd give it one more month to see if it kicks in.
Humira should definitely start showing signs of improvement and if it doesn't by 3 months its usually discontinued. I'd give it one more month to see if it kicks in.
@nogutsnoglory, thank you so much for the reply. Did you find humira helpful in managing symptoms?
nogutsnoglory
Moderator
I was on Humira for a short period due to reactions to it so I couldn't tell if it made a difference.
Hugs
My son is on humira as well
We were also told it takes time.
There is a parents section as well
Some have little ones but some have adult children as well.
Here is the link
http://www.crohnsforum.com/forumdisplay.php?f=49
My son is on humira as well
We were also told it takes time.
There is a parents section as well
Some have little ones but some have adult children as well.
Here is the link
http://www.crohnsforum.com/forumdisplay.php?f=49
@ my little penguin, Thanks so much for the response. I will check the parents section out. I appreciate the post.
DustyKat
Super Moderator
Hi nicolesmom and :welcome:
I am so very sorry to hear about your daughter. :ghug:
We have no experience with Humira at our end. Came close once but complications reared their ugly head and they ruled that one out. (((sigh)))
Do you mind if a ask a few questions? Just so we can get a better idea of where you been and how you got to where you are now.
Where is Nicole's Crohn's located?
What treatments has she had?
What surgeries has she had?
I also have a 21 year old daughter
, she was diagnosed when she was 14. I remember only too well when Sarah's life revolved around her Crohn's, it is so heartbreaking for a mum to watch knowing that you can't take it away from them and make it your own.
Dusty. xxx
I am so very sorry to hear about your daughter. :ghug:
We have no experience with Humira at our end. Came close once but complications reared their ugly head and they ruled that one out. (((sigh)))
Do you mind if a ask a few questions? Just so we can get a better idea of where you been and how you got to where you are now.
Where is Nicole's Crohn's located?
What treatments has she had?
What surgeries has she had?
I also have a 21 year old daughter
, she was diagnosed when she was 14. I remember only too well when Sarah's life revolved around her Crohn's, it is so heartbreaking for a mum to watch knowing that you can't take it away from them and make it your own. Dusty. xxx
Remicade is another option if humira doesn't work. I see you're in Ohio. Where are you taking her for treatment?
I've done Remicade it works very well I must tell you. I'm now on Humira because I became Immune to Remicade. I'm not much a fan of Humira.
Pentasa is amazing.
I've had Crohn's since I was six and a half. I had a full colectomy at that age. I've suffered so much. I know what it must be like being a mother watching your very own daughter suffer. I'm 25 now, I've been doing alot better because the thing about us Crohns patients is we can learn to adapt to this. We learn through our experiences and conquer them through it. My advice to you and her see if you can somehow find "a second opinion on this." I honestly and whole heartedly think that the cure for Crohn's is in Stem Cell research. Just keep a good head about things.
Have you ever had her try pentasa?
Pentasa is amazing.
I've had Crohn's since I was six and a half. I had a full colectomy at that age. I've suffered so much. I know what it must be like being a mother watching your very own daughter suffer. I'm 25 now, I've been doing alot better because the thing about us Crohns patients is we can learn to adapt to this. We learn through our experiences and conquer them through it. My advice to you and her see if you can somehow find "a second opinion on this." I honestly and whole heartedly think that the cure for Crohn's is in Stem Cell research. Just keep a good head about things.
Have you ever had her try pentasa?
I can tell you that the treatments today are much better than when many on this board were young. There are a lot of options. If you have not given the Cleveland Clinic a shot, I would strongly recommend it. They have one of the best Crohn's teams in the country.
Thanks for all the responses, Dusty Kat Nicoles disease is spread throughout colon, and small intestine, she has had resection & illiectomy. Her disease process was further complicated by salmonella poisioning which she obtained from handling a snake tht her father father bought her against my wishes. Which caused severe inflammation & a 4 month hospital stay during her senior yr of high school, receiving massive doses of iv antibiotics and steroids. Shes been on every oral med tht I can think of such as Pentasa, 6mp, mercaptopirine, etc as wll as methotrexate inj & spent over a yr on Remicade, only to find out tht she still has salmonella through out the entire course of Remicade, she has been extreemly depressed and withdrawn because of all this and literally continues to make 20 to 30 trips to bathroom daily. Im sure her lack of dietary restrictions had contributed to some of this but it is definitely heartbreaking to watch. She sees a doc at osu hosp whos supposed to be a leading specialist in Crohn's treatment. She was with childrens hosp GI dept in columbus up until about 2 yrs ago.
Mary
Mary
OMGosh Mary. . Your poor girl. My daughter is 19, and going through a tough time too, but didn't start anywhere as near as young as Nicole.
It is hard getting young adults to stick to any diet, especially if they don't see an improvement!
I really hope you find something to help, in the meantime, this is an amazing place for help and support.
(((Hugs))) xx
. Your poor girl. My daughter is 19, and going through a tough time too, but didn't start anywhere as near as young as Nicole.It is hard getting young adults to stick to any diet, especially if they don't see an improvement!
I really hope you find something to help, in the meantime, this is an amazing place for help and support.
(((Hugs))) xx
If it helps at all... she is one of the best places in the world for Crohn's Disease treatment. She has two other options if she doesn't get better. The hospital in Cinci is very good for GI. The Cleveland Clinic is among the best in the world. The doctors that specialize in crohn's there actually wrote the textbook on crohn's. Don't be afraid to get a second opinion. If she doesn't get better soon, I would make the 2 hour trip in either direction. Me personally, I'd give the Cleveland Clinic shot.
On diet, make sure she gets her calories and vitamins in. One thing that helped me when I was very sick was Boost. I usually bought it online or at Sams Club because it was cheaper. I found that I subconsciously stopped eating a lot because what goes in must come out. Boost shakes are an effective way to get nutrition and calories when your body really needs it. It is designed to be absorbed quickly which is EXTREMELY important when your GI tract is moving that fast. Multivitamin pills tend to move too quickly to absorb when you are that sick. Malnutrition can make depression worse, so it's important that she gets enough in her system.
On diet, make sure she gets her calories and vitamins in. One thing that helped me when I was very sick was Boost. I usually bought it online or at Sams Club because it was cheaper. I found that I subconsciously stopped eating a lot because what goes in must come out. Boost shakes are an effective way to get nutrition and calories when your body really needs it. It is designed to be absorbed quickly which is EXTREMELY important when your GI tract is moving that fast. Multivitamin pills tend to move too quickly to absorb when you are that sick. Malnutrition can make depression worse, so it's important that she gets enough in her system.
Have any of the treatments ever worked at all?