New guy

[Ozark Hill Billy]

I've had Crohns for at least 30 years now. After awhile you learn you are pretty much on your own with your disease. Initially for me, the doc's could not diagnose the disease. Confirmation was not until near death emergency surgery for a perforation and removal of 18" of small intestine that they could look at.
Since then the symptoms have returned in moderate to severe form. I have found that in my case, which I believe no 2 cases are the same, flare ups are controlled by probiotics, certain foods avoided or added to my diet and controlling stress the best I can. All of the drugs that have come out for Crohns so far have caused other problems while reducing the symptoms of the disease. I've had first hand evidence of this with my own health care and my Mom who died from the long term effects of drugs she took for her Crohn's. All the while we both had the best medical insurance coverage and top doctors.
This hasn't made me a pessimist though. Actually, I am best described as a cautious optimist from the "Show Me State".:shifty: I have to admit though, that I am occassionally frustrated and can stand to be reeled back in.

 

[CLynn]

Well put, Billy. I've it had Crohn's 24 years, and we "Show Me's" have similair views.

 

[Ozark Hill Billy]

Thanks C ! It looks like you are taking several things that I am as well as some that I have strongly considered. It's good to hear from another close to home. By the way, my emergency resection was in '98...in Joplin. Glad I was there at the time because of the great care I had.

 

[CLynn]

I need to re-add my probiotics. Which ones are you considering? I had my resection in the St Joseph area, my GI was in St Joe, so let him tell me who to use.

 

[Ozark Hill Billy]

The probiotics I take are Kyo-Dophilus9, mainly because that brand does not require refrigeration when I travel. But I have found that at times I can take too much. Once I have established the "good bugs", I maintain with one capsule every other day. I'm also taking an "Energy Complex" heavy in the B's and herbal supplements.

What I have been considering is a stronger form of B12, such as injections like you are doing. I also need to add "D" I have been told. Beyond supplements, I'm always open to hearing about prescriptions that are working. My friends and family are always pushing for the doctor prescribed regimen when they see me experiencing flare ups, which I go through great lengths to hide. At times they lay you out for awhile, don't they.

It seems I am looking for anything to boost energy because I have a lot of responsibilities to keep up with. And can't, or refuse to, let Crohns slow me down any more than the inevitable trips to the b-room.

 

[CLynn]

I don't think I gave the probiotics enough of a chance, not long enough to establish the good bugs. I will have to look into that again. Traveling isn't really a problem for me, pretty much stick around the hometown most of the time, my kids and working keep me busy, lol!
I love the B complex vitamins, but for B-12, injections are a necessity, as they took out the only part of our body that metabolizes or absorbs the B-12 when they did my resection, the ileum. Truth be told, that spot was so ravaged I probably needed the shots before the surgery.
I completely understand the friends and family "over protecting", mine are the same way. I was first on the Imuran about 15 years ago, honestly, it settled my flare down so much better than Prednisone ever had. And yes, I refuse to let it stop me too, when I was diagnosed I was in college full time, working full time to pay for that, and still trying to manage going out with friends as much as I could, lol! Everyone worried about me having kids, but I had 2, and felt better during both pregnancies than before. I take Imodium daily, but my new GI wants me to take Colestid, says it controls better than Imodium. It's actual a blood cholesterol med. So may switch to that.

 

[David]

Hi there and welcome! I'm so glad you joined

When they took out part of your intestine, what part was it? By chance the last part of the ileum right before your colon?

 

[Ozark Hill Billy]

Hey David, Thanks for the welcome message. My surgeon described the section removed as being all in the small intestines. I remember his comment that it did not get into the ileum and I had the feeling that was a good thing? Weeks prior to my emergency resection, my GI Doc ran scopes every where possible. But he could not find the area of the disease. When asked about it later and why my problem wasn't detected, he said it was beyond the reach of his scopes....if that tells you anything. X-Rays only showed minor abnormalities, but enough to start prednisone.

 

[Angrybird]

Hello Billy, I just wanted to say welcome to the forum :bigwave: I hope you are currently feeling well and that you are having a good nosy around - this is a great place to be with lots of great advice and support

 

[David]

That tells me that it MAY have been the terminal ileum though they can often have a peak in there with a colonoscopy. But it's more likely farther up the ileum or maybe even in the jejunum or duodenum. Maybe those names spark your memory

Anyway, each area of the intestine absorbs different nutrients. You have plenty of some areas, others are at a premium. If it is indeed the terminal ileum for example, you'd definitely want to monitor those B12 levels as well as other fat soluble vitamins such as A, E, and K.