Continuing Pain with Crohns

[topperdoy]

I am parent of 25 year old diagnosed with Crohn's almost two years ago. He takes Remicade and doctors see no sign of active disease upon extensive testing. However, our son continues in constant stomach pain (where Crohn's was the worst when it was first diagnosed) and suffering with constant nausea and vomiting. The doctors are at a loss to help our son any further. They are stumped on what to do. He is now seeing a pain specialist and taking anti nausea meds, but, to little avail so far. He had to drop out of graduate school and lives now with us, in bed most of time for feeling so sick. No end in sight to this interruption in his life. Just wondered if anyone else has had similar experience or any ideas.

thanks, Topperdoy

 

[DustyKat]

Hi topperdoy and :welcome:

I am so very sorry to hear about your son...:hug:

What sort of tests did he have done?
Did he have a pillcam and/or MRE/CTE?
I wonder if something is occurring further down in his small bowel. Issues elsewhere in the bowel can produce the pain and symptoms your son is experiencing. My daughter has Ileal Crohn's and all of her intestinal symptoms (pain, nausea and vomiting) pre diagnosis were in the upper epigastric region.

Has he had blood levels done for vitamins and minerals or at the least B12, Iron Stores, Folate and Vitamin D?

Has he tried Enteral Nurition either orally or via NG tube?
I was thinking that it may help alleviate the pain, nausea and vomiting plus provide him with all his nutritional needs.

A pain specialist is a good idea so I hope they are able to find some solid solutions for him.

Could it be a side effect of the Remicade???

I'm sorry I am not of much help and asked more questions than provided answers!

Dusty. xxx

 

[Tesscorm]

Hi Topperdoy,

I'm so sorry to hear that your son is not well! I can certainly imagine how upsetting and frustrating this is to your son and your family!

I have no experience with medications to share with you however, do have experience with the Enteral Nutrition (EN) that Dusty mentioned above. My son was diagnosed last year, 16 years old, and his only treatment has been EN. It has taken him into remission (or, at least, is controlling his inflammation/symptoms). It is a nutritional formula with anti-inflammatory properties and has success at inducing remission comparable to steroids - with NO negative side effects. My understanding is that it works best if the inflammation is located in the small intestine. However, even if your son's disease is located elsewhere, the EN will provide him with all the necessary nutrition and will give his intestinal system a rest (it is formulated to be very easily digested). It is not as commonly used in the US but is very commonly used elsewhere - reasoning may be patient compliancy as it usually entails 6 weeks of no food, formula only (sometimes clear fluids are allowed, ie broth). As mentioned, can be ingested orally (shakes) or through an NG tube overnight (as my son does). However, as your son is already on Remicade, perhaps he can continue with his diet and also the EN (I have read of this as well). You will find lots of info on EN on either this subforum or in the Treatment subforum. I'm also happy to try to answer any questions.

Another treatment you may want to look into is Low Dose Naltrexone (LDN). Again, this treatment is not commonly offered as the drug was initially developed for other uses and is used for crohns 'off-label' (I believe that's the term??? :blush. However, there are a number of members on this forum who have had success with LDN and, again, has minimal side effects. You can also find lots on info on LDN both on this subforum and the Treatment forum.

I hope you are able to find a resolution to your son's symptoms; I am so sorry that he has had to put his life on 'hold' as he tries to find appropriate treatment. :confused2:

There are many wonderful parents and members here who are always happy to offer their support and experience. :ghug:

 

[Sascot]

Sorry to hear about your son - it is heartbreaking watching them in pain. I agree with the others - has your son tried the EN? It would certainly give his tummy and bowels a rest and it may reduce the inflammation. It sounds like he doesn't have much quality of life just now so it would be worth a shot. If he is too nauseas to take the shakes, he could have the NG tube and it would be good knowing he is getting good nutrition. I hope the doctors manage to help him soon!