No treatment unless symptoms increase?

[rose93]

Hi everyone

I was diagnosed with mild terminal ileal Crohn's Disease a few months ago and have been waiting to start treatment. I had blood tests the day I was diagnosed and have been waiting for the results before starting Methotrexate.

However, I've received a letter to say that there is no need to start treatment at this moment in time unless my symptoms increase? So now I'm a little confused and concerned that I've just got to wait until I get worse before I can treat it?!

I wouldn't say my symptoms are severe but I still suffer everyday with a few bouts of diarrhoea every morning and stomach cramps throughout the day. Along with loss of appetite, sharp pain in hips (this never lasts long but is very painful), weight loss, painful gas/bloating and tiredness.

I just wondered what others think to this? Is it ok to go without treatment if you have mild Crohn's or should you be on medication no matter what?

 

[crohnsinct]

You must treat the inflammation. Left untreated it will only get worse and you risk a lot. Who sent this letter to you? Was it the insurance company refusing to cover the meds or the doctor? If it was your doctor I would find another and get a second opinion right away. If it was the insurance company get your doctor to help you appeal this decision as it is definitely not the normal protocol.

FWIW - my daughter was just diagnosed with the exact same thing and was prescribed Methotrexate and put on Exclusive Enteral Nutrition to get the inflammation under control while we waited for mtx to get to therapeutic levels. I asked if we could start with a lower level drug and the doc said absolutely not. That they were ineffective and the disease would only progress. So if he felt that way about a lower level drug he certainly would not let us sit and wait for things to progress.

 

[rose93]

Hi Crohnsinct, thank you for your response.

It was my consultant who sent the letter. It just concerns me because I've heard you should be on medication even if it is mild because it will just get worse (like you've mentioned). Also I'm confused as to why they've suddenly changed their mind because when they diagnosed me they gave me 2 options - medication or surgery. So it can't be that mild surely?

I've made an appointment to see them in a few weeks. It's taken years to get a proper diagnosis so now I have one I don't want to do nothing about it and just sit and wait for it to get even worse!

Thanks again for your advice

 

[24601]

I agree with crohnsinct that it's far too risky to not treat the disease. And additionally it's not just about watching for symptoms as th eletter suggests but it's important to monitor inflammation and disease activity with tests like CRP and fecal calprotectin because inflammation and disease activity do not always correlate with symptoms.

The letter certainly doesn't seem to correspond to the treatment options you were previously given.

 

[rose93]

Thanks for your reply,

I had a calprotectin test before I was diagnosed which indicated there was inflammation but I wasn't aware that you should keep having them to monitor the disease. I don't feel like I've had things explained to me very well at all. My appointment was very rushed when I got diagnosed so I didn't get chance to ask many questions.

Hopefully I'll get more answers when I see them in a few weeks. Although I'm worried about taking methotrexate, I was actually looking forward to starting treatment so I can finally start feeling better. Just seems crazy to not do anything about it, even if it is mild.

 

[rose93]

crohnsinct, do you mind me asking how your daughter has got on with the liquid diet? Has it helped at all? A family member has recommended doing a juice diet (a 28 day one) but not sure if it's a good idea or not...

 

[crohnsinct]

Both of my girls did a course of Exclusive Enteral Nutrition to induce remission at or shortly after diagnosis. EEN consists of drinking a nutritional formula...think Boost or Ensure and not eating or drinking anything else but water for a period of 6-8 weeks. After that there is a very slow reintroduction of food.

It worked for both girls. It is difficult therapy but if you could get past the first week it gets a bit easier. The added motivation comes when they start feeling better and that comes pretty soon after starting.

They don't quite know yet why it works. There are many theories out there. One was bowel rest so some people try juicing and it has not had the same success. So they are thinking there is something about the formula that is anti inflammatory.

I hope I answered your question. I am rushing because my teen needs my computer. If you have any other questions, please feel free to ask. I will be back later this evening.

 

[24601]

Hi rose93.

As crohnsinct said when people with Crohn's get treated with a liquid diet or 'exclusive enteral nutrition' it means drinking a formula for a period of time - often 6-8 weeks. Whether you use an elemental formula or polymeric formula this has been proven to work well at inducing remission and be similarly as effective at steroids.

It's a great treatment for inducing remission and avoids the undesirable side effects that steroids have and it's actually better than steroids for mucosal healing, which when achieved leads to a better prognosis.

As crohnsinct quite rightly said it isn't the same as juicing though and you won't get the same results from that.

I think it's a very common experience for most of us who have been diagnosed with IBD to get a lot of advice from those around us about what we might want to try to get healthier - and that's especially true of diet.

It's entirely understandable that people want to help and I think it's a natural association to make that if our guts are affected then what we put into them might have something to do with it. And that is partly right - in that we can attempt to treat Crohn's with diet and it can have good success, for example Exclusive Enteral Nutrition and even Partial Enteral Nutrition for maintenance treatments. There are other diets too that people with Crohn's have had some success with like SCD and Paleo, though there aren't the same kind of studies to back this up and it's very much an individual thing whether you want to pursue that at all and if you see any benefit - some don't.

Diet is also often not the whole answer to treating Crohn's and the majority of patients needs medications as well.

The cause of Crohn's is not yet known either so I never think it's very helpful when (hopefully well-meaning) people go down that route with their dietary advice and suggest that we might have caused it through poor diet.

I try to view this sort of advice as people expressing their concern and desire for me to get healthier but not follow any of it until I've researched thoroughly and read about the experiences of other Crohn's patients trying the diet or supplement on an unbiased forum like this one, where no one is trying to sell you anything!

If you want to give Exclusive Enteral Nutrition a go then you may have to be the one to tell your doctor how much you'd like to try it - since they often think it is worse to do than it is and that it's somehow less appropriate for adults - it isn't, it's just there are additional important benefits for children. In Japan and I think increasingly in Europe EEN is used to treat adults with Crohn's, whereas in the US it seems to be used less for adults and thought of as a therapy much more for just children. At least that's my perception. I'm in the UK and I've used EEN to good effect at times drinking Elemental 028, Modulen and Fortisip to give you the names of a few specific formulas!

It does sound like it will be beneficial for you to have time to really discuss things properly with your doctor - I hope you get the chance next time! If not it might be time to change doctors because with a crohnic illness like this you really need someone you can talk to and has time to listen to you too.