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Crohn's Disease Forum » Your Story » My longggg story!


02-06-2012, 08:17 PM   #1
JThorn676
 
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My longggg story!

I was happy when I found this forum, I have been reading a lot of the threads most of yesterday and today and have already learned so much. This is going to be long, I'm just copying and pasting most of it as it's a lot to re-type!

I started feeling really ill in the begining of August, I had no desire to eat and was really nausous. Three days later, I had lost nine pounds and started running a fever which got up to 103 degrees. Anytime I took fever reducer, my fever would break but came back within a couple of hours. On August 12, 2011 I decided to head to urgent care since my fever kept coming back, the doctor told me I had a viral illness and advised me to take some ibuprofen for my fever and sent me on my way.

Three days later On Monday, August 15, 2011 I woke up and fed my kids - I felt the same as I had been feeling - achy, fever, tired, upset stomach etc. Suddenly, at 9am, I got the worst abdominal pain I have ever had in my life. I ran to the bathroom ( I felt like I had to throw up) and called my husband at work so he could come home and take care of our young kids and I called my sister so she could take me to the hospital (she's a firefighter/EMT and could explain stuff better to me if I didn't understand). I basically curled up in a ball crying while I was waiting for them because it hurt to move.

My husband and sister got to the house at the same time, they were both shocked to see that I was completely pale and my lips were blue. My husband asked me if I ate a popsicle, I told him I didn't. I had no idea this was going on as I hadn't moved from the couch. My husband carried me to the car and stayed home with the kids while my sister drove me to the hospital. Once I got to triage, they took my blood pressure - which was 80/40 and rushed me to a room because "I didn't look good" . Once I got in the ER, they hooked me up to fluids, ran some blood tests and did a CT scan. They saw that I had a lot going on in my stomach and needed to get a better look so they wanted to do another CT Scan. They gave me a contrast to drink and told me they would do a CT scan after 3 hours. Shortly after drinking the contrast, I realized I hadn't gone pee yet.

I knew I should have had the urge since I had a few bags of fluid and drank the whole contrast . I've had ONE bag of fluid before when I was severely dehydrated and I was in the bathroom shortly after. The doctor came in and I asked him if it was normal that I didn't need to pee and he told me no and left the room. Not much longer after that I was told I was being sent to emergency exploratory surgery and I was septic. They wheeled me into pre-op and told me all of the possible outcomes including a full hysterectomy, removal of both ovaries on top of many other things I can't remember since everything happened so fast. I hugged and kissed my family and babies for what could have been the last time since they didn't know if I would make it out of surgery. I was in surgery for a few hours, during that time, my blood pressure got down to 66/30. My surgeon came out to the waiting room and told my family that they removed my appendix, my right ovary, my right fallopian tube, my cecum, and 1 1/2 ft of my small intestine. My husband said he started off with decent news - they think they got all of the abscesses and everything. Then he went on to say that my kidneys had COMPLETELY shut down (which explains why I wasn't urinating) and there was a 50% chance they would start working again. He also said my lungs and heart were starting to shut down.

The general surgeon told my husband that the type of infection I had had a 60% death rate and if I had arrived at the hospital an hour or two later I would have been dead for sure. Shortly after I was out of surgery, my kidneys started functioning which was awesome news for everyone. I was put in a room in ICU and I was on a ventilator. I had a vertical scar going from above my belly button all the way to the bottom of my stomach. I also had three drains coming out of my stomach, at least 6 IV's in my hands/arms one of them included an arterial line. I also had a central line going into my internal jugular(IJ) vein in my neck - I was receiving TPN through the central line. I had two cart things full of medications including antibiotics, fluid, pain meds etc. After being intubated for two days, they decided to extubate me and while they did that I pulled out my tube out of my nose... oops! But they didn't put it back in so I was happy . Four days after being admitted I was stable enough to go to a regular room which means I got to see my babies!! yay! I had another CT scan because of pain I was having and I had another pocket of fluid so I had to have a procedure to have a drain inserted to remove the fluid - thankfully, they didn't have to leave the tube in! August 26th my surgeon came in with the pathology from my biopsy which came back positive for Crohn's disease.

I got my 3 drains removed and after two weeks in the hospital all I was waiting for was my central line removal and my presciption and I was being released! On Sept 7th I saw my GI dr from the hospital. He told me that the pathology dept at my hospital is horrible so he wanted to order me blood work (PROMETHEUS) and get a 2nd opinion results from the hospital. On Sept 27th, I had my follow up apt with my GI dr regarding my bloodwork, he said words I knew he would say but I was so afraid to hear" Your test came back positive for Crohn's disease" . He also told me that not only do I have Crohn's disease but that my Crohn's disease is aggressive . He had a conference call regarding my results, he got THREE opinions on my biopsy and the blood work and they ALL came back positive. I cried and cried and cried. He prescribed me Pentasa ( 2 pills, 4 times a day). A month or so later I ended up on Budesonide which I have since weaned from!
02-06-2012, 09:50 PM   #2
mikeyarmo
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Welcome to the forum JThorn676!

I am glad you are benefiting from the forum so much already. There is a lot of information on here, so hopefully you will continue to learn and be able to take more control over your Crohn's Disease.

I have read a lot of stories on here, but I am still shocked at so many of them. I am at a loss for how quickly you started feeling bad to ending up in the hospital last August. I am glad you made it out of the surgery and are coping right now.

What symptoms are you currently experiencing? Are you still in pain or is the Pentasa helping keep your Crohn's under control?
02-06-2012, 10:04 PM   #3
David
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Greetings and a most sincere of welcome's to you

Holy moly, what an ordeal! I'm so sorry you've been through so much but thank goodness you made it through.

You mentioned that your Crohn's Disease is aggressive. Are you only on Pentasa at this point? Or are you on specific nutritional programs as well?

That they removed your cecum and 1.5 feet of your small intestines tells me that they likely removed a significant portion of your terminal ileum. As such, you're going to want to pay very close attention to, at the very least, your vitamin B12 and folate levels. Have you been tested for those levels yet?

We're glad you're here. Anytime you need us, let us know.
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02-06-2012, 10:20 PM   #4
Vickiinicolulis
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hi j,
My husband has had crohns for 35 years. It is a rough disease but w/right drs, meds, and diet (that fits you) it is managable. If you ever just need someone that has lived w/crohns disease pt., feel free to hit me up. peace & love
02-06-2012, 10:36 PM   #5
JThorn676
 
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Mikeyarmo - I'm actually feeling pretty well right now. I was having some cramping and the budesonide took care of that so my dr weaned me off of it. I had an endoscopy in november which he said looked good. I had two failed attempts at a colonoscopy since the prep made me violently throw up. I did have a successful prep this past wed though so I finally got to have my colonoscopy on Thursday. I was nauseous for about 3 days before the prep so I was very nervous about the results but the doctor said that my colon is pink, looks great and that he didn't see any inflammation. I asked him about the nausea and he said that if I am still experiencing any nausea at my follow up apt in two weeks, he said we can do the pill cam to look at the small intestine better but I haven't had any nausea since. I guess it was probably my nerves. He did take some biopsies also. He said that it would see anything the naked eye couldn't see. Is it common to have a good scope but the biopsy come back abnormal?
I was just weaned off the budesonide about 3 weeks ago and have felt pretty good since.

David - Yes, right now I am only on Pentasa. I was on Budesonide but was weaned off of it about 3 weeks ago. My dr did routine bloodwork since my diagnosis but i'm not sure what he tested for... After reading on this website, I was realizing that I probably needed to look into my B12.. My liver enzymes were elivated so my GI dr did a liver ultrasound and I guess I have a "fatty liver". I have noticed that salad is a no no for me. As is milk and ice cream . I am going to talk to my dr at my follow up next week about specific foods and stuff. Before all of this, I had never heard of Crohn's so I had no idea what to expect.

Thanks for the warm welcome!
- Jennifer
02-06-2012, 10:38 PM   #6
JThorn676
 
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vickiinicolulis - Thank you! From what I heard this disease is completely different for everyone. I plan to ask my dr more about the diet aspect of it at my next apt. Good luck to you husband!
02-06-2012, 11:57 PM   #7
JThorn676
 
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okay, sorry to post again but I decided to google B12 and folate deficiency and on a website it says "vitamin B-12 deficiency can cause neuropathy, from numbness and tingling of the hands and feet". Shortly after diagnosis ( I would say within 1-2 months), my big toe on my left foot has been numb. I called my GI and asked him if it could be a side effect of the pentasa or budesonide and he said no. I wonder if maybe I do have a B12 deficiency and MAYBE it's causing the numbness in my toe! I am def. going to bring this up to my dr!
02-08-2012, 10:35 AM   #8
David
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B12 tests are not included in the "routine" bloodwork. Your toe could indeed be due to peripheral neuropathy. Bring it up to your doctor and if your levels haven't been checked, get them checked. And get the actual number, it's something you're going to want to keep track of and learn about.
02-08-2012, 07:48 PM   #9
JThorn676
 
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I have an appt next Thursday and have a list of questions to ask. A possble B-12 defficiency is on that list now. Thank you for the information!
02-08-2012, 08:59 PM   #10
David
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Add folate and vitamin D as well. Seriously.
02-09-2012, 12:03 AM   #11
JThorn676
 
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I will. Thanks!
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