Not yet Diagnosed-FRUSTRATED

[Mudstick]

Hello everyone. I am a very proud Air Force wife, mother and grandmother to a nearly 2 yr old wonderful grandson. I just turned 40, I told my husband that I am falling apart already. LOL I have been having bouts of off and on diarrhea for about 20 yrs. There are time when its worse and times when its better. I know the foods that bother me so I eat only in moderation and only at home. I never go out for Ice cream unless I get it and bring it home or even to just eat fresh raw fruit and veggies is horrible.

This is my 3rd flare up of IBD or possible Crohn's (will have the second Colonoscopy on the 26th). Not looking forward to the prep but if its gonna make my stomach quite hurting, I'll do anything right now.


The first flare up was in 04 possibly before that and the Dr's thought it was GERDS in 02 I had a Lapnison (gastro surgery for acid reflux) and for several yrs I was ok with no real problems. In 07 I started having really bad diarrhea and stomach pains in my right lower side, Dr's thought it was my appendix and did every test known to man, one of the test was an Iodized MRI to which I had an allergic reaction to the Isotop that nearly killed me. At that time I stopped all testing and just lived with it. I was told that I just had IBS.

Then in 07 the pains and the diarrhea came on again. It gets so bad that I can't wear anything but sweats, I can hardly even stand anything to touch my stomach. I feel bloated and its hurts in the lower abdomen to urinate. They finally did a Colonoscopy about a month after the flare up ended and I was told that there was evidence of inflammation but no real findings. So again I live with it.

Then about 3 weeks ago the pain came on again and has not stopped. I have had some bloody diarrhea and some constapation. The GI Dr that I was finally able to see after several trips to the ER told me he is almost sure that it is Crohns but cant make a diag without the Colonoscopy. I am just so frustrated that it takes an act of congress to get anything done quickly in this little town of Great Falls, MT. Not many Dr's and it is hard to get an appt. I have been off work now for almost 2 weeks because I cant wear my work clothes and I don't think they let me where sweats with my belly hanging out to work. LOL

I am just frustrated and would like to have some answers on what is wrong with me. I can not walk upright the pain in so bad and I have to lean back in my recliner just to sit. On top of everything else I also have Psorisis and since we got stationed here in Great Falls my body is covered in patches over 50% of my body. FRUSTATED and don't know what to do anymore.

 

[kev1986]

so sorry to hear , i m also going through the diagnosis stage at the minute ive has scope etc and have been told by specialist that hes 99.99% sure its chrones but wants to wait for biopsy whic is tommorow at 3.20 for my results i have been bleeding for 5 week snon stop and going to toilet about 4 times a day and only after 5 week shave they started me on steroids to help with it , i am only 25 and have a young family and am now very worried about my career since some mornings i cant harldy stand never mind get to work but u have to say that readin gthrough this site has helped me keep my chin up a lot as there is a lot of ppl out there that do live with it and carry on doing normal day to day duties because when i speak to people who aint got it they always seem to tell you a ll th ebad things and all the things you cant do and the horror stories
atb
kev

 

[xJillx]

Hi and welcome! I am sorry to hear you have been struggling with your health without any answers for so long! Unfortunately, it can be really difficult to diagnose IBD sometimes. But it does sound like you may get a diagnosis soon. If not, find another GI. People with IBS do not bleed, so it is obvious that something more serious is going on.

Good luck with the upcoming colonoscopy and please keep us posted!

 

[Mudstick]

Thanks

Thanks to both of you. I am just taking it day by day. As for finding another GI that is not an option. Here in Great Falls we only have 3 GI's and I only got into see this one because of a cancellation otherwise I would have had to wait until the end of the month. Thanks again and I will keep you posted.

 

[thecrohn]

Look into the SCD

I love that you acknowledged that what you eat has an affect on your tummy. Though you may be eating foods that you think are ok because they are healthy, your body still cannot digest them like a normal person's because of your IBD.

Have you ever heard of the SCD diet? I've been on it for a month and it's been turning my life around. It's putting foods that are easily digestible into your body. Check these sites out and do some research:

http://www.breakingtheviciouscycle.info/
http://www.thescdexperiment.com

Let me know if you have questions. In terms of my experience, the results here prove that my inflammation has gone down... SIGNIFICANTLY... after only 4 weeks on it. I hope the info helps, please feel free to email me at [email protected] if you have any questions at all about it.

 

[StarGirrrrl]

Please feel free to stop by the Undiagnosed section of the forum We are all going through the same thing.

Have you had any other tests, bloods etc, or scans (MRI or CT) or anything to look at your small bowel, such as a Barium Follow Through? Crohn's can occur from mouth to anus so can be very tricky to find.

If your scope doesn't give you answers then you GI should be doing other testing. One normal test does not an IBS diagnosis make!

 

[Mudstick]

I have had test after test and the only conclusion is that I have IBS. That was diagnosed several yrs ago. My last Colonoscopy was in 07 at that time there was some evidence of inflammation but no definitive diag. The GI is doing blood test again and I had a CT done last week.

 

[thecrohn]

Glad you're getting CT scans and colonoscopies. They told me that I had IBS too. #DoctorFail

 

[kev1986]

when i first wnt it to hospital in so much pain i was passing out and both D and V both with blood present they thought i had weals disease which i caused by rats urine as i do a lot of shooting and pest control then they thought i migh of just had an infection then when they put camera up he said 99.9% chrones but will await to see what biopsy shows up etc to clarify

 

[jenny2]

hello mudstick, i am in the same situation that you are trying to get a diagnosis. had small bowell follow thru, endoscope, colonscope and they didnt find anything. today i had a ct scan of stomach so we will see if they find anything. they thought i had celiac disease but that was ruled out by endoscope. this is a fight i tell you .

 

[Mudstick]

Yes jenny2 it is a fight. I have been fighting for nearly 10 yrs. I have been poked and prodded by so many different Dr's. I was beginning to feel like a pin cushion. We have had to move around so much with the Military that each time I have a flare up I just about have to start all over again. This time it took me forever to get into the GI. I was in the ER several times and was told each time that I needed to be seen by GI. Well when you live where I live and try to get into a GI Dr. Not happening. I just lucked out and they had a cancelation last week.

 

[Jin]

Welcome and hello!

The diagnosis stage is a pain (literally and figuratively) and I'm so sorry you're going through it. An IBD diagnosis is a tedious process but I hope they find out the causes to your symptom soon so you can get the treatment you need. Stay on top of your medical symptoms and make sure your GI is doing EVERYTHING to fins a solution. As mentioned prior, if they don't find a GI that will.

Keep us posted with your journey!