Crohns and Common Variable Primary Immune Deficiency

[MissMina]

Hi Folks,
I had a colonoscopy and I was diagnosed with Crohns Disease of the terminal ileum. I've had Common Variable Primary Immune Deficiency for several years. I take Hizentra to pick up the antibodies that my body won't make on its own. The doctor told me I would need treatment for the Crohns Disease and I have an appointment again in three weeks. It looks like a lot of the treatments seek to dampen down the immune response and my immune system is already impaired. I am not sure what they can do for me. Has anyone else had these two diagnoses together? I am really sad I have another chronic condition.

 

[Lady Organic]

Hi MissMina and welcome to the forum
I am sorry about this new diagnosis.
Several people here have multiple medical conditions and have to see different specialists.
Also, a lot of IBD patients take 2 immuno-supressants, I am one of those, if that can reassure you a little bit. I take purinethol and Humira. Of course I was not happy with this, but I had no choice, as one was not enough at some point. Two years since addition of 2nd medication and no signs of side effects. I have already come across some research studying 3 immuno-supressants, all taken together, for one condition, such as IBD.
Hopefully your doctor will find the perfect combination of medication for you so that you feel better soon.
Let us know how it goes,
Lovely doggy BTW

 

[MissMina]

Thanks for the information Lady Organic. My gastroenterologist asked me to see her 2-3 weeks after my colonoscopy. I got her first free appointment which is two months away. There must be a lot of tummy trouble where I live.

 

[Lady Organic]

So your next appointment to get the medication is in 2 weeks or in 2 months?

 

[MissMina]

Two months. I don't think the doctor realizes how backed up the appointments are.

 

[Lady Organic]

Yeah, I am sorry to hear this. This is very long. Your disease has been diagnosed and is active. It should be a priority to offer you a treatment. In Canada or in the US we usually get treatment on the day of colonoscopy if disease is found. In what country do you live? Is this the only GI in your area?

 

[MissMina]

I live on the middle peninsula of Virginia. I go to Virginia Commonwealth Hospital ( fomerly Medical College of Virginia). I believe the issue on the day of the colonoscopy was my other chronic condition, Common Variable Primary Immune Deficiency. The gastro doctor said she needed to coordinate things with my immunologist. They don't give me steroids as they are trying to build up my immune system and not tamp it down. It is ironic that CVID is caused by b-cells that don't make antibodies, yet folks suffer from autoimmune disorders and inflammation.
There are other GI doctors in Richmond, but I try to keep my medical providers within the VCU system. They are the only ones who were able to put together my diagnosis of CVID (a rare disease) so I believe I generally get good care there.
I am trying to "rest my gut". Do you have any suggestions on the best way to do that?

 

[Lady Organic]

I understand, it makes sense the GI wants to coordinate with your other doctor. You'll see how it goes afterwards in terms of fallow up and emergency care. In the meantime, something interesting you could do to rest your guts is a course of enteral liquid diet. Enteral liquid diet is commonly used with children with IBD or in other countries (ex: UK, Israel) in the world for adults. In North America, GI doctors working with adults rarely talk about these diets. It can bring Crohn's to remission, just like steroids can do, with similar rates of sucess. if you have a chance to consult a nutrionnist at your hospital, that could be great and she could help finding a liquid meal for you. A pharmacist can also help with that. here is an article on the subject, the litterature is full of such scientific articles:

An overview of the role of exclusive enteral nutrition for complicated Crohn’s disease

The role and efficacy of exclusive enteral nutrition (EEN) in the treatment of luminal Crohn’s disease (CD) has been well established over the last 2 decades. Consequently, in many centers nutritional therapy is now considered first line therapy ...

www.ncbi.nlm.nih.gov