How do I handle this?

[jfransoo]

This is the first time I have ever thought about joining a support group. Reading everyone's story sure makes me feel a little better that I am not the only one having problems still.

I got diagnosed with Crohn's Ilietis in 2007. Before I was diagnosed I had mild stomach pains but had loose stools. Gradually it started to get worse and worse. One morning I woke up, went to the bathroom and saw there was blood in my stool. Lots. I called in sick to work and went to the hospital. They ran a few tests then decided it wasn't an emergency but to get my GP to refer me to a GI doctor. Soon enough it was done and I was getting more tests done. MRI, CT scan, Colonoscopy, etc. I went back for the results and the GI showed me what I had. Unfortunately I had to basically pry the information of Crohn's out of him since I didn't know exactly what it was.
I don't remember the pills he first put me on, but I tried 3 different pills in a period of a couple months and they gave me flu like symptoms all day everyday. I went in for a check up and he said that my inflammation or symtoms were not subsiding so it was time for surgery. I went over my options and decided against the surgery. I wasn't sure yet what to do but I got referred to another GI specialist.
During that time I got put into the hospital for a period of 2 months all together. I lost 30 pounds or more and weighed just under 90 lbs. They couldn't do surgery at the time so they decided to not let me eat anything but ice chips for 2.5 weeks and put in a pic line. From there they decided I would go on Remicade. I got out of the hospital on October 30th, 2011.
I got 3 doses of Remicade on 3 seperate occasions until the last dose I went to anaphylactic shock. Remicade went out the window. Ended up back into the hospital and was going for surger until my GI suggested Humira.

I have been on Humira for the past year and things have been going well. Except for the last couple months. I wake up every morning and my stomach hurts. Every morning. I work 2 full-time jobs and starting school in January for Education. I have a huge worry that I am going to wear myself out, but what are we supposed to do? I have to make money for my house as well as get my education. My stomach now feels raw and I feel like there is not much we can do. IN the last year Humira has subsided my symptoms although my doses have been increased from once every 2 weeks to once per week.

Thanks for reading my story. I am excited to be a part of this group.

 

[David]

Greetings and welcome

When you say your stomach hurts, are you referring specifically to your stomach or could it be your intestines? Regardless, if you haven't told your doctor about this, please do as they'll likely want to evaluate whether you have inflammation higher up.

Have you tried any dietary changes to see if that helps at all? Has anyone talked to you about enteral nutrition? Have you had vitamin and mineral levels tested such as vitamin B12, vitamin D, and magnesium? Crohnies are commonly deficient in a variety of vitamins and minerals and those three are quite common.

Again, welcome!

 

[Andrea30]

Hi there

Remicade failed for me. Now I am on Humira. Just started a few weeks ago. But still having surgery shortly as my symptoms are getting worse and now I have a fistula. I always find that when my symptoms are at there worst I stay on liquids or low residue diet.

Nutrients, vitamins, probiotics very important to take daily

 

[jfransoo]

Hi David,

Yes, it is my intestines. I have told my GI but he just increased my dosage of Humira. I know there is still inflammation because my recent MRI has showed some still. Although it is better than what it was. I haven't heard of the eteral nutrition? I am taking pre-natal vitamins as my doctor has explained are good to take. I have 3 fistulas... I am worried surgery will be the next thing, but I REALLY want to pray for remission although my GI pretty much had a startled look on his face when I asked him when it may happen...

 

[Alaksander]

Hello, I am new here and since this is the first group i have ever joined concerning Crohn’s. I wouldn’t recommend this for a long period of time as i am currently stepping off it. But i got diagnosed in 2003, 1 major almost died surgery due to the large amount of puss i had built up in my abdomen, and another for a perforated colon. If you can get a referral to a pain specialist you can have him try a low dose of the fentanyl patch, don’t let them go over 25mcg as it is really rough on you especially if you get a fever, your patch will give more than its supposed to and you hit withdraws early. In saying that, I have been on the 50mcg dose for the last 8 years.

The patch in addition to the vitamins listed above post and a decent diet, i got plenty of flare up's but they never lasted long, my only problem is it takes no time to dehydrate cause of the amount of lower intestine that was dissolved in abscess and removed in surgery. I would stay on it because i feel good, clear head no fuzzyness, cause i hate the high my brain is healthy no senses making it fuzzy, but i have no appetite and i have a really hard time gaining weight. I tried no narcotics for the first 3 years after my diagnosis and it was really hard, pain turned to agitation and anger and i lashed out at my family and friends. It saved my life i think and my marriage. It will help you control your bowel movements and you will not notice your guts pounding or feel like you’re being shived over and over. that three years before the patch, I have tried remicade, pentasa, a few others i cant remember now. I was taken off all the meds but presidone once in a while for flare ups and the fentynal. I have tried going off it once a few years ago and life the three years before i was in the hospital almost every month, cause my crohns resurfaced and was hitting my intestines, pancreas, stomach and all that good stuff. Randomly and with out mercy it seems like cause the narc locked it away. I am still getting off it cause i became allergic to the adhesive and tylenol from others meds over the last 10 years. I am not sure what i am going to do, but i am tired of being dependent on meds that fail cause my liver hates me or i become allergic to it. Just know your options and then decided for yourself what is right and how far you think you can take it before it starts to do harm. I have read Humira is decent i guess i might ask my gi to try that once the fentynal is outa my system. hope i dont have to go back, cause i sure do not miss the hospital trips.


This is an option that you should really discuss with a pain management doc cause you never know if it will work for you or not, but working 2 jobs and going to school and not having and pain control is going to put more stress on your body then you can safely handle. I wish you the best.