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Crohn's Disease Forum » Your Story » Pass the TP; My life with Crohns


08-18-2015, 07:54 AM   #1
itsmaybeline
 
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Pass the TP; My life with Crohns

I have been fighting IBD/Crohn's disease for the last 10 years of my life. I was first diagnosed back in 2005 with Irritable Bowel Disease, back when no one knew what Crohn's was yet. It was a generalization that my intestines did not funtion as they should. The symptons started with multiple bathroom breaks, cramping, pain, and stomach spasms. Then the diarrhea increased and so did the amount of time I spent in the restroom and the number of times I went. My friends and I would joke that I was always in the bathroom, hence our catch phrase "pass the toilet paper". I was embarssed by my condition but did not show this to anyone, I continued living my life. Even thru the embarssing moments where I had to miss school or work because I soiled myself on the way. Driving around looking for an empty lot to pull over, running behind a garbage can outside a business, going in a plastic bag in my car in a public parking lot, catching a flat on the expressway stuck in traffic in my white nursing uniform and having to go. Or simply just going on myself and try to make it home quickly and jump in the shower completely clothed. My childrens lives changed as well. Depending on if mommy feels well today or not. Hoping that I would not soil myself in public while with them. They covered for me, while I crouched on the side of the road to look out for others so no one sees what i was doing. They held my hand as I lay in bed numbed by the pain.
The symptoms only worsened throughout the years until the point where I lost complete control of my bowels. I could no longer hold them and was afraid of leaving my home. That was when I decided to go see a specialist. The disease was taking away my life, my happiness, and destroying my family. I was hospitalized numerous times and the Dr would not know what was wrong with me. Call it gastritis and send me on my way home. Where I was in pain and felt more alone then ever.
When I moved to Lehigh Acres, I was finally diagnosed with Crohns Disease while pregnant with my third child. It was my hardest pregnancy yet. After bouts of abscesses, turning into fistulas, drainage, episodes, chronic diarrhea, extreme fatigue, pressure headaches, sinuses, low blood sugar and pressure, chronic pain in intestines, inflammation, 2 false miscarriages due to how strong my pain was and add to that the symptoms of pregnancy, it was utterly the worst! But after 39 weeks I gave birth to a beautiful healthy baby boy 9lbs 4oz. And in just 3 weeks I was having my first surgery to control the fistulas and drainage caused by the disease. I am currently receiving chemotherapy every 4 weeks. Along with very strong medications given to gout and transplant patients as the chemotherapy alone is not functioning, At times I am so weak, I can barely get myself out of bed. My mother and daughters help with laundry, dishes, dinner, and the baby. My mother is taking me to my weekly Dr's appointments. And she has been missing work with NO PAY due to my illness. She was recently demoted to part-time and is not eligible for insurance through the company and she has to take care of herself, having high blood pressure and osteoporosis, I know she is tired (i can see it in her eyes) but she won't say so. She doesn't understand the disease. Like many others whom I've encountered and have spoken in regards to my illness. This is new to her and the world. She doesn't understand why there is no cure. Why am I not healing? Why do I have more bad days then good ones? Crohn's disease is a chronic, painful, debilitating, disease and HAS NO CURE. People say to watch what I eat, or do a spiritual cleanse, or try this herbal remedy or that home remedy. I have tried EVERYTHING!!! I have been fighting this disease for 10 years now. i spent most of it without insurance and suffering thru the pain. Unfortunately now there is so much damage that I can no longer work. My intestines do not function as they should. My inflamation has spread to my blood. My hope of the miracle drug that is Remicade to help me heal is not working, even with the other medications, it isnt doing what it is meant to do. All knowing that I am putting myself at risk of Cancer and Death.
Most of my days are spent in a haze of sleeplessness and pain. Zombie like and unable to function. Other days I can not leave the house because my diarrhea is so bad I'm not making it to the bathroom on time. But thru it all, she helps me. She is tired and she helps me so much. It breaks my heart that I can not help HER. The way it should be! The way I planned to. And worked so hard to finish 4 years of college and nursing school, only to succumb to the debilitating reality that is my life with this disease.
08-18-2015, 08:35 AM   #2
scottsma
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I'm so sorry sweetheart.Nothing I say will be of help to you,but at least you've found us here on the forum.There will be someone along soon who's maybe had similar experiences to you,and can share notes with you. I hope you find something to help you soon.Ten years is far too long to suffer as you have.Feel better soon,best wishes.
08-18-2015, 10:06 AM   #3
Tuff
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I'm sorry you're having such an awful time. Have you tried enteral nutrition?
http://www.mayoclinic.org/tests-proc...n/prc-20012832
I haven't been on it myself, I just do low residue, but some members have had success with that. When I had uncontrollable diarrhea, I started using adult diapers. It took away the stress and worry. Then if I had an accident, it was easier to clean up. I also carried changes of clothes, plastic bags and wet wipes. Your mom might benefit from a support group as well. Sadly I no longer have any family members nearby willing to help. Hang in there, and maybe get a second opinion.
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Inflammatory bowel disease may more than double the risk of a serious blood clot in the legs or lungs.
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Stelara, Warfarin, calcium, Vitamins B12, D.
Previously: 5-Asa, Cipro, Flagyl, Prednisone, Aza, Remicade.
Pulmonary Embolism, DVT's, osteopenia, Peripheral neuropathy.
08-20-2015, 04:45 PM   #4
Ari
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Well, as far as I know not everyone gets the same kind of Crohn's disease. We are all very individual and perhaps it would be better to avoid Remicade if it does not do anything for you, especially that it may cause additional bleeding and it weakens your immune system and perhaps that is not what you need. I remember my doc tried to put me on Aza, but I refused and preferred to have a resection instead and, currently, I am in remission, or so I think, but I still bleed and have bouts of diarrhea. Maybe you should take Vit K and K2 for your bleeding and methylcobalamin (B12) as it is needed for the brain to function and I think it is also involved in the production of bile and you may be loosing a lot of it through your poorly functioning ileum. I know processed sugar may cause fatigue as well so perhaps it would help if you switched to glucose and added some vinegar or lemon juice to help your body produce energy (Krebs cycle). Obviously, you should try and avoid dairy and other inflammatory foods, bananas as they are full of fiber and fatty foods (bile). I hope you get better soon. x
08-21-2015, 08:32 AM   #5
itsmaybeline
 
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Thanks for your kind words. I will look into those different remedies. Anything to alleviate some of the symptoms. Just had a capsule endoscopy done, Waiting for the results now.
08-21-2015, 08:33 AM   #6
itsmaybeline
 
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and we did stop the remicade finally. waiting on the approval of stelara now.
08-21-2015, 03:37 PM   #7
fuzzy butterfly
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aw what a time you have had hun, i pray they find the right meds soon... btw what a cutie your little one is, just gorgeous. sending hugs and best wishes your way x
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5yrs since dxd. 3yrs in remission.. in remission since march 2014, dxd july 2012, ileostomy march2014, reversed feb 2015 all's good so far
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08-22-2015, 07:49 PM   #8
Ari
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Anything to kill the pain and help with those horrible fistulas. I hope they approve it for you. What do you think brought it on 10 years ago?
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