Old hand at Crohn's/ New to the forum

Hello Everyone! I'm new here as you might guess, I have been watching and lurking in the background for awhile just to get an idea of what the forum is all about. Needless to say I have found lots of helpful info and some stuff that I already knew. Anyway, to begin my story(it is quite long) I will try to keep it as brief as possible. I was Dx'd with Moderate/Severe Crohn's in 1993 at the ripe old age of 23. I can honestly say that I was sick off and on most of my life, just thought I was especially sensitive to stomach viruses..uuhhh NOT! After lots of meds everything from Asacol & Pred to 6MP(no biologics, they didn't have them then), switching doctors from a D.O. to a G.I.(A GOD send) and lots of invasive testing:voodoo: we(my G.I. and me) decided that the only thing left to do was surgery since there was no remission in site. So at 27(1997) I had a full abdominal collectomy with a procto-collectomy and ileostomy, which put me in remission for about 11 years. I have to say that I became very cocky and complacent, thinking the worst was behind me because I felt ever so much better.

No more urgent cramping and praying/crying on the toilet, No more planning a route around town(on the days I could get off the John) just to run the necessary errands. Life was good! Until that is about 5 years ago when I started having really bad heartburn, belching and vomiting(on occasion) so I started self-medicating(OTC antacids and stomach aids) I know I know I just hate going to the doctor and I didn't have insurance. Last year I had a terrible car accident(rear-ended) that messed up my neck and back after lots of therapy, CT scans, X-rays, and MRI it was discovered that I had huge ovarian cysts. So I got on public insurance where you pay as much as you can and the state pays the rest, had a Hist in October 2011 and they had to run my complete small bowel because of adhesions, and they found that I am malnourished(minerals and vitamins). So, I just had another scope(EGD/Colonoscopy) and the G.I. that was assigned to me doesn't know much about Crohn's.

He states that the testing was negative even though there is severe scarring and ulcerations of the duodenum. So he put me on 3 different antibiotics and Nexium for the next 2 months. Still have the belching, vomiting, and heartburn. Trying to get a second opinion, and talking to a Crohn's advocate from Abbott. Not sure I want to try the biologics because of all the side-effects, and elimination diets and stuff don't do much for me. Have thought about LDN and may be willing to give it a try since I am already on Welbutrin(smoking ceasation) for anxiety. Any and all advice will be noted and researched. Thanks for your time, this went a little longer than I had planned.

Hello and :welcome: to the forum. Sorry to hear you are not doing so great at the moment, I hope you will be able to get a working treatment sorted soon. I can only agree about trying to see a new GI as you need to see someone who DOES know about this disease and can look after you properly.

Wishing you all the best.

AB
xx

Thanks Angrybird for the Welcome, and the support. Will be out of town for a few days, but hopefully will have an appointment with a new G.I. soon.

Greetings and welcome

I'm so sorry to hear you're experiencing problems again after so many years of remission.

Out of curiosity, what vitamins and minerals did they find you are deficient in and are you supplementing them now?

One treatment option you may want to look into as well is enteral nutrition. It could at least help settle things down and improve your malnourishment while you find a doctor who knows about Crohn's Disease.

Again, welcome

Thanks David..They said vitamin B6 &12, vitamin D, potassium, iron, and all the nutrients you would get from multivitamins. I am currently taking all of the above, but they make my tummy hurt so it is hard to eat.

Also had a blood transfusion while in the hospital 4 Pints, because I had lost so much with the cysts and surgery(6hrs), they also said that my facia(SP?)(what holds your organs in under the muscle tissue) was depleted due to the malnourishment.

Will check into the ET feedings.

Thanks!

If I had to guess, I'd say that it is the iron that is upsetting your stomach. The others are usually well tolerated by most. But iron is pretty hard on many. There are a variety of iron supplements out there though.

How much vitamin B12 and vitamin D are you taking per day? Vitamins and minerals are something I'm super interested in as I feel they're vital for people with IBD.

Multivitamin-Alive Women's Energy(has fruits and veggies in it)has 1,000 IU of D, 6 mg of B6 and 18mcg of B12 also contains B1,2 &3

Then I supplement with Nature Made B-complex W/vitamin C
Nature Made Calcium 600mg W/Vitamin D3 200 IU 2xdaily

Do you know what your exact levels of B12 and D were when you were last tested? I ask because those levels of B12 and D are very likely nowhere near enough. For example, when it comes to B12, people with Crohn's Disease can't absorb it because of inflammation/scarring/removal of the terminal ileum where it's absorbed. As such, they either need injections of it or to take oral/sublingual forms along the lines of 1000+mcg per day.

I can't stress enough how important it is to get your vitamin and mineral levels into the ideal range.

Hmmmm

I don't have any idea about what levels they were when they tested in October and then again in late Feb., and it will be June before I see that G.I. again. But I will get some extra B12 today so that I can start to feel somewhat normal. Thanks for the advice. How much Vitamin D should I be getting??

Therein lies part of the problem. To figure out optimal dosages for you, you need to have your actual results. It's not a good idea to blindly supplement in my opinion. You might take 1000mcg of B12 by mouth per day but your B12 might not budge or even go down the next test. That would tell you that you need to probably get injections. Or you might take 1000mcg per day and your level shoots up to 800ng/ml which tells you that you can probably try 500mcg per day orally. Or with vitamin D you might have a level of 22 so you need over 4000iu per day but it's again about tracking to ensure you're getting an optimal dose.

I'd call and get the results for as far back as you can. From there, we can make some suggestions that you can them discuss with your doctor. But it's so vitally important to get your actual numbers so you can track how you're doing with your current dose AND correlate it to how you're feeling.