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Crohn's Disease Forum » Your Story » Surprise, you have Crohn's!


05-17-2014, 03:15 AM   #1
Crohn's mommy
 
Join Date: May 2014
Surprise, you have Crohn's!

I was diagnosed with Crohn's disease in my mid-twenties, during my single, party life. I was drinking frequently and always eating out, which I thought was the cause of my daily illness. Until, one morning I woke up in excruciating pain! My belly hurt so bad, I couldn't even stand up straight. I woke up my boyfriend at the time and asked him to take me to the hospital. I thought for sure it was my appendix. The hospital admitted me right away and said they need to do a CT scan and told me to call my family if I wanted. The CT scan revealed that my intestine had ruptured and I needed emergency surgery. Did I forget to mention that it's Christmas morning? One of the worst things was having the NG tube placed, so uncomfortable! Then I was off to surgery after signing my life away and seeing my family. I remember waking up while the nurse was placing my PIC line and fading in and out of consciousness. When I finally woke up, I was horrified to see a huge incision up the middle of my tummy, and a bunch of horribly ugly staples, and a drain! The next few days were horrible, I became a humane pin cushion. I was on IV nutrition, insulin, Morphine, had the NG tube in place, and because of the steroids - started my menstrual cycle. To top things off, my incision became infected by e-coli and the doctor had to open both ends which I had to pack with gauze and change daily. Then, the doctor came in and asked me if anyone else in my family had Crohn's disease. I said no why? He said oh nobody told you yet that you have Crohn's? I said nope but you just did and started crying. I was terrified after he continued to tell me about the young man a couple floors above me that has Crohn's and may never leave the hospital alive. Great bedside mannor!!! My family was arguing over me and my so called boyfriend ran off with my car. I didn't have insurance at the time and I only had two weeks paid vacation to use at work. After spending New Year's in the hospital, I was released the next day. I went home alone and continued my IV antibiotics on my own, while my neighbors helped me take care of my pets. After a few weeks, I was able to return to light duty at work. Since then, I found my husband and have had two beautiful children, with no complications. While pregnant, my Crohn's was in remission but now I'm showing signs again. Everything I eat seems to bother me and I'm running for a bathroom 1-5 times a day. I rarely have a normal day. I tried going gluten-free and saw some improvement but I had to stop. I'm currently breastfeeding and the diet decreased my milk production drastically. I'm looking forward to a diet change and trying the wild oregano oil after my daughter is weaned. I have never been on any medications because I either didn't have insurance or was pregnant/breastfeeding.
05-17-2014, 03:32 AM   #2
valleysangel92
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Join Date: Dec 2012
Location: United Kingdom

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Hello! Welcome to the forum

I'm sorry you had such a rough time.. And such an insensitive doctor! I think they forget that this is actually our lives they are talking about.

A lot of people find they experience remission during pregnancy, the change in hormones seems to help calm the disease.

I know you're breast feeding, but if things seem to be getting worse then you do need some medications. There are some which are very mild which might be an option for you.

The mesalazine group of meds (pentasa, asacol etc) are the mildest available form of crohns medication and although they aren't always effective, they may be better than nothing. Now I'm not an expert and I don't know much about which meds are ok with breast feeding, but based on the medication strength, I would think these are your best option. If you want to discuss them then your doctor should know what is and isn't safe.

Once your daughter is weaned you can look into other treatment options which will hopefully calm things down and get you into a nice steady remission. Do you have insurance now? Being in the UK I don't need to worry about that , and it always bewilders me how people can be left in those situations, it's really unfair that you have to not get meds because of what's in your bank account *hugs*
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Nicola
coeliac disease/Osteopenia /Crohns/Arthritis/
laperoscopic hemicolectomy 25/06/ 2013

Meds- Vedolizumab, sulfasalazine, Lansoprazole, Vitamin D, prochlorperazine, Oramorph, MST, B12 shots My journey with crohns: http://glutenfreecookiemonster.wordpress.com/

Allergic to - inflectra, aza

Non CD meds - Gabapentin, paracetamol, ventolin
05-17-2014, 04:33 AM   #3
Crohn's mommy
 
Join Date: May 2014
I just recently got insurance because of the Obama Care. However, my deductible is really high and I can't afford to pay out of pocket right now.
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