Learning to Deal with Crohn's

[skip]

I think I may have joined this forum almost two years ago. Not sure. Didn't spend much time on it. May have even left my story here in early 2010. Anyway, my first experience with Crohn's was in April 1985. I was 31 and had a blockage of my small intestines right where they meet the large intestines. Man, that really hurt. I was in the hospital for three weeks. Had an NG tube down my throat for two of those weeks. They feed me three gallons of sugar water through an IV for the first two weeks. I was back on my feet running again a month after the surgery. Never went on any medication. Still wasn't normal though. The year before my latest surgery, I had to begin using Imodium regularly. Anyway, my Crohn's came back with a vengeance after all those years. By the time my doc did a colonoscopy on me, he couldn't get the scope into my small intestine. I had surgery the following Friday. They gave me a pill just before my surgery that had only been on the market 2.5 months. I don't think I could have lasted another day without the surgery. They removed two feet of my intestines, a fist sized abscess, and fixed a hernia I didn't know I had. Anyway, the pill was designed to wake up my intestines after the surgery quicker. They started me eating the day after the surgery. That all came up that night along with two bedpans full of blood. Gross and scary also. No food on Sunday. Began eating again on Monday and home on Wednesday night. Back in the hospital a week and a half later to put a drain in my side for one of those hospital operating room acquired infections. I've done okay since then. Put back on all my lost weight. Couldn't eat gluten for four months. All those antibiotics they had me on to kill the infection caused that I believe. I had a relapse in October caused by a very very stressful week at work. Thought I had a fever because my face would get very red and feel warm. But I didn't have a fever. Weird. My doc doesn't know why I get red in the face. It's very infrequent now and somehow related to the Crohn's I think. I can eat anything without any problems I can tell. I've been on Mercaptopurine for over a year (2 50mg tabs a day). Just started the Humira injections. I've taken the first four and then two starter injections. Stopped taking Imodium a week before starting the Humira. I was in much better physical condition before the last surgery. Have never really recovered in that respect. Since my relapse, I get tired more often. It's easy to take a nap during the day. Used to go to bed a 8 PM and get up at 4 AM. No problems getting up at 4, but I rarely last past 7 or 7:30 in the evening without pooping out. The doc is going to leave me on the Humira and Mercaptopurine because of the results of my recent colonoscopy (lots of white specks - Crohn's and two want-a-be ulcers and one real one like cold sores in your mouth the doc said). Had to drink the salty stuff as the prep for my last colonoscopy. Threw about a fifth of the first dose down the drain and a third of the second dose. The doc never knew. There's not much you can do to make salty stuff taste like anything but salty stuff. I'm very grateful things aren't worse and I went so long without a second surgery. I have a great wife and children for my support system. My "faith" really makes a difference. The second surgery really made me reevaluate my priorities. Wondering what to expect with the Humira. Hope I get my energy back. Will really watch my stress level at work now. Hope I can be of some help to someone dealing with Crohn's.

 

[Angrybird]

Hello and welcome....back? Sounds like you have gone through more than enough and will be of much help and support to others. Fingers crossed the Humira will do the job, I may be starting this soon so am interested on how others are doing on it.

 

[jimmyf]

Hey skip, i really agree that the stress levels can really effect crohn's disease. Personally, when I get stressed, I can immediately feel it transfer to my stomach and nausea and pain come on, then I realise I need to stop stressing and the pain goes away!

 

[Jessi]

Hi Skip. :welcome: to the forum.

I don't know anything about the red face, but I can definitely relate with you when we're talking about fatigue. It really is a bugger. Are you on any vitamin supplements? The right vitamins could really help you out.

I'm on Remicade and am so grateful for the biologic drugs. Humira is a really great one that helps a lot of people get into remission. You can read up on others' experience on Humira and get some questions answered here in this sub-forum.

I'm really glad you joined us. :hug:

 

[skip]

At one time I was taking vitamins with iron, but stopped that about a year ago when I struggled getting rid of a kidney stone. I think the kidney stone may have been caused by those darn horse pills I had to take before my surgery and a week before that before a colonoscopy. I will start back on the vitamins today and see what happens. I'm also on monthly B12 injections. Thanks.

 

[Jessi]

I love that you're getting vitamin B12. I really need that one, but the pills make me sick and I haven't spoken to my doc about injections.

I take a liquid form of vitamin D3 and feel a ton better. Be sure that you're getting D3 as well. It's the disease fighter.

 

[skip]

B12 Injections

I give myself B12 injections in my thigh once a month. How long have you been on Vitamin D3? Did you get it over the counter?

 

[Jessi]

I buy Wellesse D3 liquid from Costco the same way I buy tylenol. It works really well for me. I've been taking it for about 3 months now. Before that, it was a pill form that didn't work as well.