I'm a newbie to this

[Ladydie]

Hello, here is my story.
In January of this year I decided to go to the doctor after a few months of having stomach cramps and pain and this may be TMI but was having a substance coming out of my belly button. I had been extremely tired all the time, could fall asleep in only a few minutes, but I just thought I wasn't sleeping well. I do not go to doctors, except for my annual exams so I needed to find a doc. I went to a family doc, who drew my blood, looked at my belly buttons and gave me antibiotics. The next day I got a call at work tell me I need to go to the hospital immediately as I was losing blood and needed a transfusion. I wasn't prepared for what the next two months would bring for me. I had an ultrasound, colonoscopy, endoscopy, CT scan, pelvic ultrasound and a capsule endoscopy with blood draws to find the source of my anemia.
I even went to see a Hematologist, nothing, no results. I had both the GI and hematologist telling me they did not know the cause of my anemia. I had several friends and some family telling me That my symptoms sounded like an autoimmune disease, so I asked them (GI and Hematologist) and they both stated my symptoms didn't match....I had no blood in my stool and no diarrhea. However they still needed to review my capsule endoscopy. I was starting to think it was all in my head, but obviously there was something wrong because I required a blood transfusion. I got several messages from the GI doc to call them, so I did. I was driving home yesterday when I got the news....Crohn's disease.
I wanted to cry and scream at the same time. finally an answer, but what does this mean for me, my family, and what changes to we need to make. I am on Pentasa, Omeprazole and have to take iron 3x daily. I have never been one to take pills, now I have to take at least 12 daily.

I know that there are some life changes that need to happen, but I don't know where to start. Any suggestions would be greatly appreciated.

 

[24601]

Hi!

Did your GI tell you what the various finding of all the tests and imaging were?

I would want to know
*if/where they saw inflammation - as in which parts of your GI tract (small bowel? colon? rectum? esophagus?)
*how extensive is the inflammation?
*do you have any strictures?
*do you have any fistulas?
*do you have raised inflammatory markers in your blood? Usually measured by CRP and ESR. Useful for assessing how well treatment is working and monitoring disease activity.
*have they done a fecal calprotectin test? What was the result?
*have they explained the drainage from your belly button?

*how are they planning to treat this?

I read that you were on pentasa but I'm imagining they may review that when they have all the results back since it's not the most effective medication for Crohn's - though it works for some people who have it mildly. Basically if it were me I would want my doctors to explain to me why they felt comfortable with that choice.

I don't know if that's helpful for you at all but that's where I would start before making adjustments to diet or anything.

Hope you're feeling better soon!

 

[Ladydie]

Thank you 24601. The mass of ulcer (that all that comes to mind of what they told me) in my small bowel which they wanted to know if I took excessive aspirin (and a few others were mentioned). I told them that I don't and stated that it was more than likely Crohn's. My rectum was fine and they took a biopsy to test for celiac (which was negative). I am in the process of the fecal test. They did say that I have gastritis and have Schatzki ring but found no other bleeding to explain the severe anemia. I don't believe they test for inflammatory markers but they were throwing so much at me they might have told me. At one point they felt the extreme blood loss was from cysts on my ovaries but my obgyn, stated it could not be since they were considered in normal range.

I do have major abdominal pain which was a big part of me getting checked. It gets so bad where I have to lay down. Rest seems to make the pain a little more bearable I will call and see if I can get an earlier appt to address the questions you pose. Thanks again

 

[Ladydie]

As for the drainage from my belly button, the antibiotics they gave me cleared that up. The GI after hearing that requested the CT which was normal minus the constipation (didn't feel like I was) and cysts.

 

[POTTYTIME!]

Ladydie:

I have CD. I also take pentasa at no avail. But that is what I started on because of insurance purposes. I still take it along with humira injections, steroids, also at no avail. So with everything im at 14 pills a day with humira injections every 14 days.

Sorry to hear about the blood loss. That is very scary. Did they tell you anything about your colonoscopy? As far as food habits, everyone is different. I find no more pizza, sketty, raw vegetables, fiber. I mainly eat chicken, alot of fish and rice. I cant eat McDonald's anymore. Boiled carrots and zucchini are good to me.

There is never TMI on here. Thats how we all learn the ins and outs of this disease. Wish you the best.

DX with CD
gallbladder removed in November
Awaiting results from CT SCAN to schedule resection and fistula surgery

current meds:
Humira injections every 14 days
Pentasa 4000mg a day
Prednisone 20mg a day "started taper on Friday"
Nexium 40mg a day
Bentyl 60mg a day
Norco 10-325 when needed
Liquid Omega 3 800EPA / 500DHA
Chamomile oil
Jarro-Dophilus EPS probiotics

 

[POTTYTIME!]

Forgot to add.

Try a heating pad on your belly. That is the only thing that gives me some kind of relief.