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Help needed on the IBS board
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sheba_q posted:
There's a post there titled Help and it sounds like she has Crohn's.

http://forums.webmd.com/3/ibs-support-group/forum/255/0?@guest@
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laurenhope91 responded:
I'm Lauren and I am the one who posted Help on the IBS board. if anyone can give me any advice or help please do. my username is laurenhope91 so you can follow my story.
 
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miserable_sob replied to laurenhope91's response:
Lauren the link in this thread is broken, there's no way I can go to it and read whatever you posted.
 
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laurenhope91 replied to miserable_sob's response:
yeah i just realized that well you can go to the IBS community and i am the first story.
 
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laurenhope91 replied to miserable_sob's response:
if you go to the IBS support group i am the first story. idk why it wont let you go to it?!
 
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laurenhope91 replied to laurenhope91's response:
Hey so i just got back some blood work and my SED rate was a 43!!! i also have the trait for thalsemian minor which means i am most likely anemic. also i have a high content of fat in my stool because of malabsorbtion of fat in the colon i looked at aq few web sites and it all led to Crohn's Disease. I have an appointment with my new GI on april 1st so i am trying to wait patiently. it really upsets me that my GI dr didnt do any of these test that my primary care dr did.
 
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laurenhope91 replied to laurenhope91's response:
Someone please HELP!
 
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JavaMamma27 replied to laurenhope91's response:
Crohn's is a hard disease to diagnose and some of us are YEARS getting answers. Be patient. Aprinl 1st is close. I have had MANY Dr's dismiss my symptoms AND blood work for over a decade. And not until I was debilitated and at a moderate-severe level did I get any answers. And we are still trying to figure it all out. This month is a "watchful waiting" month for me to determine my need for surgery.

Even if/when you get a Crohn's diagnosis you may have to wait for treatment. The biologic medicines require MORE testing before you can start those, there are more tests to determine the severity of the disease. And then there is the time waiting for SOMETHING to work (which is where I am).

This is not a disease that is quicly diagnosed and treated. We all have to learn ALLOT of patience. And unless you develop symptoms that could be life threatning (obstruction, excessive bleeding, infected fistula) treatment can be slow.

I have to remind myself that I am one of MANY pateints my Dr's see and my needs are not threir top priority. Even though it is MY life, I still have to "get in line" for treatment.
 
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laurenhope91 replied to JavaMamma27's response:
Thank you. i hope everything works out for you. yeah i do need to be more patient, i guess i'm just annoyed and aggravated because my GI dr is convinced it's IBS. but im not convinced because i have all of the symptoms of Crohn's. I have heard from other people that it does/can take a long time to diagnose it and that's what scares me because i am so anxious to know.
 
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Elizabeth_WebMD_Staff responded:
The "spaghetti" after the discussion number did not allow the link-

Lauren's Member Story -
http://exchanges.webmd.com/ibs-support-group/groupstory/16600753

Discussion referenced -
http://forums.webmd.com/3/ibs-support-group/forum/255

Elizabeth
 
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laurenhope91 replied to Elizabeth_WebMD_Staff's response:
So my therapist has been wanting me to see a nutritionist that she works with for months now and i have just been tossing it around. well because im not eating my therapist was worried about me and said i need to see her immediately. i have been planning on finding one that fits in with our insurance but i figured just use her because they work together. it just so happened that she was working today and she had an opening for an hour consultation. it went really well. but again because i am only eating about 150 calories a day and barely drinking she was very very concerned and is making me drink ensure and gatorade. she gave me meal ideas that sound really good but im not sure if i will be able to eat them but she wants me to and i will try.
 
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OyWithThePoodlesAlready replied to laurenhope91's response:
oh wow, yeah - you can't survive like that. Do you know what causes you to not eat? are you having physical pain or depression or just a lack of appetite?

I just read your post w your sed rate - now everyone's different with the inflammation tests but 43 is quite high! unfortuently, it doesn't say where the inflammation is. My CRP is what jumps for me, and before my dx it was 11.2 and the GI wasn't overly concerned, but a few years later after the dx, he was not happy when I was at 6.8 so I think they interpret it in the context of things.

hang in there,
Ali
 
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laurenhope91 replied to OyWithThePoodlesAlready's response:
Hey Ali,

Im having physical pain and lack of appetite. my nutritionist/dietiton is making me eat a lot of food high in protein because i am having malabsorbtion, today i tried eating breakfast and i had a plain waffle with half a tablespoon of peanut butter. about an hour after i ate it i had to run to the bathroom and had diarrhea. an hour after that i had to go again and it was really bad diarrhea and it looked like there were specks of light red blood, because i didnt have anything red to eat recently. i'm convinced that I have Crohn's Disease because of all of my symptoms and such high inflammation. my dr would always say it was post surgery but when i saw my surgeon he said 5 weeks ago it wouldn't have to do with my surgery!! im just so annoted and frustrated. my stomach feels so sour today and am having a lot of discomfort and pain. we shall see what the dr says....i hope he finds the CORRECT answer!
 
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OyWithThePoodlesAlready replied to laurenhope91's response:
yeah, it does make things complicated when there are alternative explanations... I've never had surgery, maybe other people here who have can give you a read on how long the SED would stay up (although, I'd expect your surgeon to know...)

what I make when I loose my appetite is whey shakes. if you can find a good, non-denatured whey - even better. I like bluebonnet but natural factors whey works too (they just have a stronger taste).

throw in a blender:
1 scoop whey
1 scoop twinlabs ultra fuel fruit punch
3 scoops cytocarb
1tsp to 1tbsp (how ever much you can tolerate) flax oil or Udos 3-6-9 oil
.75 to 1 cup of water

if you can tolerate a banana, that's always good, or throw some milk in there (cow or almond or soy or whatever you can handle)

that's what I do, along with vitamins. If I'm only drinking shakes, I try to mix up 3-4 at a time, and get vitamins in capsules and dump them in the shakes, then you're getting it slowly throughout the day in case one dose moves too quickly to get absorbed...

I hope you can find foods that work for you and get some answers!
 
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laurenhope91 replied to OyWithThePoodlesAlready's response:
yeah before i saw the nutritionist my therapist was telling me to do the same thing with fruit. i had my firt ensure yesterday and i really liked it. but as for my first day of going back to eating....i did not like it. i was always running to the bathroom or always had the urge to go. and after i ate anything, i would feel nauseous and felt like i had to throw up. at one point i did after i had dinner. it was like all acid and some of dinner, not to sound gross. but all day i felt miserable and i still do today. i hate all of this and just wants to know what the heck is wrong with me. i am convinced its Crohn's but i wont know until April 1. thanks for all of the tips!


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