Mother...CD Sufferer

[Hill]

Hi, I am a mother of a CD sufferer. My daughter was diagnosed at age 13 and now at age 20 has had her first resection of approximately 16 inches of her small intestines. It seemed mild at the beginning and she was treated for about 5 years with Pentasa 500mg x4 daily. She began to gain weight back but suffered with many flare ups and joint pain. At age 18 we noticed that she again was losing weight and the flare ups were becoming more numerous. She was then put on Humira X1 per 2weeks. After 6 months of treatment we noticed the same trend and in one month lost approximately 25lbs and could not keep anything down, not even the dye for the CT scan. They determined her stricture had become so severe in a short time and she had developled pockets of diverticulitis. The immediately referred her for surgery in fear that she would develope a tear.

I was reading a lot of information on this site and found it interesting to hear all the stories, what works, what doesnt and what others are doing for this disease. Thank you to whomever that has opened this up. It is great.

I do have just a couple of questions:
- She will be going for her followup this week and I see a lot of people on B12 shots....has this work for you? What is the purpose and do you recommend that we ask about it?

- She has been told she will go back on an immuno therapy again, possibly humira again. Has anyone tried more than one and what are some of the ones that have worked for you? I understand there are alot of new ones coming out.

 

[Emily]

Hi and welcome! I am about your daughter's age, 19, and only just in the past year or 2 has Crohn's really re-entered my life, so I can understand how tough it is to have it attack when you've enjoyed your teen years being in decent health.

B12 shots are a must in my opinion. Our diseased intestines do not take in B12 properly, and particularly if she's had a resection, there is even less absorption. Many Crohnies have drastically low B12 levels, and I'd be surprised if her levels were normal. My GI told me to never buy any B12 pills, no matter how high the dosage, cause it'll be a big waste since I won't absorb any of it. Some people claim the injections give them more energy, I haven't found that but I like to know that I'm properly supplementing a deficiency.

So far Humira is working great for me, but it doesn't work for everyone all the time! Sometimes it is possible to re-start a drug like this successfully, but I think there is a higher risk of developing antibodies to it. Remicade has been around for a while, and Cimzia is a bit newer. Also, I believe Tysabri was recently approved for Crohn's too. I think there are some people here who have stopped and restarted Humira that can give some advice, but my thinking is that if it wasn't helping her in the first place, why go back?

 

[DustyKat]

Hi Hill and :welcome:

I'm sorry to hear about your daughter...:hug: My daughter went undiagnosed for about 18 months but was eventually diagnosed, via emergency surgery, at 14.

When you say your daughter had 16 inches of small bowel removed I assume this was terminal ileum? If so then she will have to have B12 supplementation as the terminal ileum is the only place in the intestine that it is absorbed. Her levels may be normal at this point as the body is able to store B12 for some time but keep a check on it 6 monthly. If she is unable to absorb sufficient amounts then a lack of B12 will result in pernicious anaemia and that has serious side effects.

She should also have blood levels done for Iron Stores, Folate and Vitamin D.

Both of my children have ileal Crohn's and both have had ileal resections. They are both on Imuran and have been in remission since their surgeries...5 and 1/2 years and 10 months respectively.

We have a parent's forum here you might like to pop by and have a look at...

http://www.crohnsforum.com/forumdisplay.php?f=49

I hope the surgery has been successful for your daughter and it brings her many, many years of relief. Good luck and welcome aboard!

Dusty. xxx

 

[xJillx]

Hi Hill and welcome! I am sorry to hear about your daughter. There are many more treatments becoming available, but the current big 3 biologics are Humira, Remicade, and Cimzia. I suggest checking out the Treatment Forum to read up on these different treatments.

I sure hope your daughter finds a treatment plan that works for her real soon!

 

[Angrybird]

Hello and welcome to the forum Dusty and Jill have covered all the key areas that need to be looked at vitamin wise and other meds that can be tried so I don't need to add anything here. I was just wondering how your daughter is feeling right now? Did the op go smoothly for her? Please keep us updated on how things go at the follow up.