Not Diagnosed Yet - What do you think?

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

allieinwonder

Moderator
Joined
Oct 22, 2010
Messages
1,000
Hello. My name is Allie. I am an Army wife, and my husband and I are currently in Schweinfurt, Germany with the US Army. I am also a college student (online from the states) and am a proud Alpha Xi Delta member.

My story starts a long time ago, 6 years in fact, when I was 15. I started being very irregular digestive wise, and would have frequent abdominal pain. This pain would feel like my abdomen was shredding itself. I went to the GI and he said it must be IBS...my gut told me he was wrong. He put me on medication (I have forgotten the name of it) and I was allergic (it made my throat close up). I went back a month later and he told me I was a liar. I stopped going to him.

In May I started to have more severe problems. I had pain in a very certain spot, diahrea, and blood in my stool occasionally. The worst was the pain. I went to an urgent care center and an ER, and they said they could not figure out why I was in pain. I thought it might be ruptured ovarian cysts, which happened already last January, so I went to my OBGYN. She did a transviginal ultrasound and laughed at me...telling me all it was was constipation and to go home. I was so embarrassed...the pain meds I was on for the abdominal pain caused constipation, it was not why I was in such bad shape.

I went to a second ER and the doctor poked at the spot I was in pain and said it must be a hernia. I went to a surgeon, and he had a hard time finding one, and found a very small one, but it was not in the spot I was in pain. He went ahead and did surgery anyway. By the time I recovered from that, I was feeling better in my abdomen and went by to normal life.

About 6 weeks ago I ended up back where I was before. Abdominal pain in the same spot, very severe..I feel like I have been shot. Diahrea, sometimes blood is in my stool as well. At this point I went to another urgent care and they checked for kidney stones and did an xray of my digestive system. She did not find anything. I ended up in the ER again a few days later, and they did a CT scan of my digestive system. Again, nothing. The doctor barely even tried to help me, said there was no physical sign that I was hurt, and sent me away with nothing but more pain meds.

I finally went to a GI about two weeks ago. He said it was either crohns, ulcer colitis, or colon cancer. In the past 6 weeks I have lost 20 pounds at least, I am losing my hair, and I have only been eating about 1.5 to 2 meals a day because of the pain. The pain is in a certain spot and it gets much worse with excercise and eating. I feel very weak, and for the first time in my life I feel very depressed and I am having anxiety attacks. I have also had ulcers in my mouth for the past 6 years.

Through all of this we had to move to Germany. That is why it is taking so long for me to get treatment. My husband got sent off to Afghanistan, and he was suppose to get sent home because of my problem, but he isn't yet. I now have to start over here with my diagnosis, and I have been trying to wait for my husband to get back because I am scared of the colonoscopy/ upper endoscopy that I need to get. But at this point I am very sick and I cannot wait any longer. I have a doctors appt. on Tuesday.

What do you guys think? Sorry it is long...very complicated. I'm hoping to have answers soon...I am so sick I almost want to drive myself to the hospital to get help, but every time I have done that they have turned me away.
 
Hi Allie and :welcome:

Sorry to hear you are going through all this. Well you certainly have something and I suppose the first thing to say is you don't get intestinal bleeding with IBS. Everyone is different but the symptoms you describe certainly can be attributable to IBD right down to the mouth ulcers. Where is your pain located and are you on any medication now?

I guess the main thing is don't be discouraged by your normal test as it is not uncommon around here for people to wait quite a time for a diagnosis and a big part of the reason is normal test results. Perhaps before your appointment and if you have time you could document what you have experiencing over time and take this to the doctor with you. Here is a link that may give you some idea of the things that to tell your doctor, writing things down helps to keep it clear in your own head and it is just to easy to forget stuff when you are living this day in and day out and you are in pain................

http://www.crohnsforum.com/wiki/Diary-Inclusions

Also here is a link to the Undiagnosed Club, you might find some similar stories there and some things may fall into place.........

http://www.crohnsforum.com/showthread.php?t=13113

You are your own best advocate so keep listening to your body and fight tooth and nail until you get answers and appropriate treatment. Whatever is going on it is NOT normal and you deserve to be treated with respect and dignity, tell the doctors that.

Please stick around 'cause there is loads of info and support here and you don't need to be alone with this. Browse the food and diet forum, you may pick up some tips regarding what to eat when you are in pain and any questions at all just fire away and we will do our best to answer them. Good luck, keep us posted and welcome aboard!

Take care, :)
Dusty
 
Last edited:
Hi Allie, welcome!! Are all your doctors on base? I hope you have access to a real GI specialist who will take your symptoms seriously. Good luck!!
 
Hi Allie
and welcome

I can't add any more, Dusty's said it all!
You could try the low residue diet whilst you're waiting, this can give the bowels a rest and slow down the diarrhea, it always works for me.

http://www.crohnsforum.com/wiki/Low-Residue-Diet

Hope you get to see a specialist in IBD, this isn't IBS! You don't bleed with IBS
Glad you found us, lots of support and friends here for you
lotsa luv
Joan xxx
 
Hey Allie
I'm so sorry to hear how you've been treated. Some doctors can be so inconsiderate. Being in pain is nothing to be dismissed. On top of everything else, I'm sure you're under a great deal of stress worrying about your husband. Man, it's just coming at you in all directions. I think having a colonoscopy/endoscopy is probably wise at this point. Don't be too scared, it's usually not a painful procedure. The prep is generally the worst part. I'm glad you found your way here. You need the support of people like us who know first hand the things you're dealing with. While we are all different and treatment is very individualistic, we all have a common bond in the types of symptoms we go through. Dusty has pointed you in the right direction. Feel free to come and vent your frustrations. There are definitely no topics off limits here either. We talk about it all. Any questions, fire away. We're all here to help and support each other. Welcome aboard. Hope to see you around.
 
Thank for the responses :) I am really glad I have found this forum

My pain is located (if it were me looking down) on the left side close to my belly button. The GI I saw back in the states said it was probably my colon that was causing the pain.

The only medication I am on right now is Tramadol to help with the pain. Other than that I am also on Loestrin 24 for the ovarian cysts a year ago.

As far as I know I will be initially seen by someone on base, and if they don't have a specialist for this I will be referred to an outside civilian doctor. But I'm hoping the clinic here can handle this because getting off base is hard because I don't have a car yet.

I have had a feeling this was an IBD since I was 17. But like I said before, doctors have always brushed it away. I'm definitely not backing down until I get some answers :)
 
Back
Top