Need Treatment Help

Has she had an upper endoscopy? I had one about 1.5 years ago that showed my entire stomach was lined with erosions. A stricture can also cause ongoing nausea.

When I was feeling as lousy as it sounds like your wife is my Dr decided to stop waiting to see if 6mp would work and put me on remicade, which helped very quickly.

Good luck finding something that will work for her.

She had an endoscopy of the stomach last Spring.  It showed her stomach was highly inflamed.  The pill cam showed Crohns this Summer.  We will asked about remicade.  Thanks,  John

It would be helpful John if you could give a list of the meds that have been tried so far or the current recommendations. That way we won't suggest something that she's already failed for some reason.

Crohn's treatment is often a matter of trial and error. Many of the meds take several weeks to months to have an effect so treatment plans often call for lengthy delays after starting a new med before the doctor decides something isn't working. This can be extremely frustrating for everyone - patient and doctor alike.

If she doesn't already have an anti-nausea medication to use I would talk to her doctor about getting her Zofran. This is a powerful anti-nausea med and usually works really well.

My best suggestion for short term relief is that she go on exclusive enteral feeding for at least 2 weeks to see if that calms her symptoms. She may have considerable relief in even a few days. My son had noticeable improvement after 5 days.

To do it, she needs to substitute liquid formula - can be OTC like Ensure or Boost - for food and beverages so she isn't "eating" anything. Instead she will drink the formula, some water and perhaps one can of diet soda and 2-3 hard candies a day to begin with. If she starts to improve she can add a very small amount of things that are homemade and use sugar (no corn syrup) like homemade icees with sugar and flavoring like Vanilla Extract.

She should consult her doctor before starting. But be aware that many US doctors do not encourage their patients to take this approach because the doctors are either ignorant about it or feel their patients will fail because it's hard to stop eating in our food obsessed culture. If she can get referred to a dietician with experience in feeding disorders and recovery from bariatric or GI surgery that would be really helpful to her and her doctor.

This approach is used outside the US widely and is the treatment of first choice for newly diagnosed children with Crohn's in Canada, Europe and Asia. In children, it is as successful as prednisone in inducing remission and, unlike prednisone (or entorcort), actually promotes intestinal healing and stabilizes the patient's nutritional status. In the past couple years, US pediatric GI's have begun actively recommending this option to their patients but there doesn't seem to be the same thing happening at the adult level. Yet.

I think she does need to be on meds to get her into solid remission and keep her in remission. Doing exclusive enteral nutrtion may help her feel better quickly while she and her doctors are figuring out what meds she needs.

If she decides to try doing formula, do a separate post and we can offer suggestions on how to help make it easier to do successfully.

Best wishes,

Patricia

My wife and I thank you for all the great info.  She has a question.  Are you ever symptom free,  have days with NO pain.  She is so scared that the pain will never go away.  Also it seems her doctor is starting her on low doses of meds.  She is on 3g of pentasa, 9mg of entocort, 2g of carafate, plus vit. D.  Thanks,  John

John, the pentasa and the entocort aren't going to address the gastric issues - they are meant for the small bowel & colon. I don't know what carafate is.

I haven't had as much pain as your wife, or as much nausea, but I have had plenty of heartburn (ugh). The ppi meds do help with that pain. There are anti-nausea meds that work well, too - I used phenergan suppositories a few times (cut them super small so I would be awake to enjoy not feeling nauseated, LOL) and that worked well.

Is your wife's pain gastric? Or is it right side/left side? Did the pill cam show any strictures?

Your wife is still in a flare if she's still in pain. I think we talk about a flare as a sudden increase in symptoms. They can be long or short, acute or chronic. This is a chronic illness, but many people have months or years (hopefully) of no significant symptoms once they get the right treatment. Given that, however, most feel that even when we're not feeling well we should stay on maintenance meds.