Crohn's patient for about 3 years... I have some questions.

[funnybunny]

Hi everyone, here's my story.

Ok, so after many many tests, I was diagnosed with Crohn's of the small bowel, but also suffer with symptoms of Irritable Bowel and an aggressive stomach.
YAY ME! lol

Anyway, the thing is... I live in Ireland.
I've been on Pentasa (Mesalazine) 3000mg daily since I was diagnosed, and for the first few months it was great and I was careful with my diet.
My diarrhoea lessened and I felt no pain.

But then I started to slip, and seemed to have a constant continuous flare up.
My doctor put me on a corticosteroid (I think it was called Budenafalk) for one month. I felt no ill side-affects.

But when that didn't work, he put me on a REAL steroid, that effected my moods in the worst possible way, and made my face very swollen and made me grow unwanted hair lol.

I find it odd that after Mesalzine my doctor would go to such extreme medication. He said if the steroid didn't work, I would need an immuno-suppressant.

After that, I lied and told him I was fine. I was not going down that road.

My question is: Is Ireland really that bad off that we don't have any other drugs for Crohn's besides anti-inflammatory's that stop working after a few months, and harsh steroids that give you unbalanced moods.

My doctor is not exactly young, and even though he's supposed to be the best, I really feel like we skipped a step, especially when I read these forums and here all these other names of medications. There must be something else right?

Any help would be so appreciated.

Thanks.

 

[funnybunny]

anyone? I'm getting desperate. I've started vomiting recently and I'm afraid my Crohn's is getting worse.

 

[Aussie]

Hi Funnybunny, I guess when looking at Crohns treatments there are two arms. First the induction of remission, then the maintenance of that remission.

With small bowel Crohns you can attempt to induce remission with:
1. Surgery, good if it's short segment disease or if you have non-inflammed structuring or fistulising.
2. Steroids - budesonide good for small bowel Crohns, but not quite as effective as prednisone, which has a long list of side effects. Neither any good for maintaining remission.
3. Exclusive enteral nutrition - not quite as good as prednisone in adults, but you avoid all the horrible side effects.
4. Biologic therapy - infliximab or humira (or cimzia in the US)
5. experimental therapies - low dose naltrexone, etc.

After you are in remission, good maintenance therapies are:
1. Thiopurine - Azathioprine or mercaptopurine, great great medications for Crohns!!! There are some risks, but well worth it in my opinion. Undertreated Crohns for fear of potential treatment complications is a poor option.
2. Biologic therapy.

To give you my opinion of your situation, I would suggest attempt remission with enteral nutrition or continue with the oral pred if it's working and start a thiopurine as soon as possible, because that will take around 3 months to start working.

Good luck.

 

[David]

Hi Funnybunny and welcome to the community I'm sorry to hear of your troubles

Aussie really knows their stuff and outlined things nicely. I'm a huge fan of enteral nutrition and suggest you research it and discuss that option with your doctor.

Yes, the immunosuppressants such as Azathioprine and 6-MP are scary. But as Aussie said, they work pretty darn well.

I'm also excited about the prospects of Low Dose Naltrexone though it can be a little hard to get.

In the end, if your disease isn't properly treated things can get out of control and fast. I understand your fears, I really do. But few things are scarier to me than untreated or improperly managed Crohn's disease.

 

[Thermo]

I understand your fears, I really do. But few things are scarier to me than untreated or improperly managed Crohn's disease.

This ^^ if you are concerned or scared now due to medication untreated Crohns can get much worse very quickly. I am not trying to scare you but I myself have lived with it my entire life and I am in constant fear that something I do or eat will send me to the ER, don't let it get like that for you, getting on several forms of maintenance medication as quick as possible is a must, just find the combo that works best for you, you cannot reverse the damage you can only try to limit future damage.

 

[funnybunny]

Thanks guys, a lot of these terms and medications are new to me so I have some googling to do

Thanks again. I'll keep you updated

p.s. I've actually been on "Budenaside"

It helped a bit but not much and then I was put on a much harsher steroid which caused horrible side-effects.

I think I'm probably going to try go the natural way and get some acupuncture, and some psillium husks for the diarhhoea, and keep taking my aloe vera and L-Glutimine.

I really don't like the way western medicine treats Crohn's.

 

[David]

I can understand your desire to try a more natural approach. I feel if all you do is what you listed, the outcome will be bad. From a personal perspective I'd prefer a western medicine be added, but here are some additional ideas from an alternative standpoint that may result in more proper control of the inflammation:

- Dietary changes - Enteral/elemental nutrition, [wiki]paleo diet[/wiki], or [wiki]specific carbohydrate diet[/wiki]. Juicing is also growing on me a lot. Diet doesn't help everyone, but I think it can help most at least reduce some symptoms. But it's about finding what works best for you. Experiment as necessary.
- Hydration - Dehydration and loss of electrolytes is common. Proper hydration and adding electrolytes back in can help you a lot.
- Alternative treatments - I'm a fan of Low Dose Naltrexone. Two studies in adults have had great results (see the stuck thread in when following that link) and there are very few side effects. It's also not very expensive. Medical marijuana has been shown to help a lot as well if that's something you're comfortable with and is legally available in your area.
- Stress reduction. Do whatever it takes to reduce your stress levels. In addition, a weekly or even monthly massage if funds are tight is great. Studies have actually shown that massage can reduce inflammation. Give yourself self-massages as often as possible in between the professional ones.
- Exercise if you're able - a gentle yoga is a good one
- Vitamins and minerals - find out which you're deficient in and properly supplement. People with Crohn's disease are commonly deficient in vitamin B12, vitamin D, folate, and magnesium as well as a host of others. But those four first ones should definitely be checked.
- Supplements - there are a variety that help improve overall health. Check our our diet/fitness/supplements forum for ideas.
- Alternative medicine - This could be stuff like acupuncture like you mentioned, including a naturopath in your treatment team, etc.

Bring your doctor in on the conversation for all of this. Get their input and let them help supervise your disease state regularly. Some doctors might need a little push on some of this stuff, but we can provide studies that showcase the efficacy of all the above.

 

[funnybunny]

Thanks, I will work on being better with my diet. It's hard though.
The massage idea sounds great. I'll buy a tennis ball this weekend.