Undiagnosed and unsure

[Melanie610]

Hi everyone. :ysmile:

My name is Melanie and I'm 24. I made a post in the "undiagnosed" thread in the Support forum, and Cat-a-Tonic said I should post here. I was hesitant at first, really. I didn't know if I should where most of you guys all have a "name" for what you have, and I'm just kind of teetering, playing the waiting game. I came in search of answers because my body is telling me something is wrong....and the only way to know what something is like is to experience it.

All I know is that I've never felt this awful. I've felt this way for over three months now. Well, I guess you can say technically I've been feeling crappy for about four years. It all started when I was 20 and was about 30 pounds overweight at 150. I had to have my gallbladder out because it was nonfunctioning. It comes out. Then I'm suddenly lactose intolerant, I still can't tolerate greasy food, there's problems with IBS, and at the same time I am rapidly gaining weight and eventually balloon to 210 pounds by October 2008.

Fast forward to September 2010. I have been nauseated daily for two months. I weigh 170, dropping from 190 in June. I am vomiting up my breakfast and lunch four or five times a week and having terrible IBS symptoms again, mostly in the afternoon and evening. I am tired and always trying to nap on the weekends. Having been told by ER and urgent care doctors each once that it was a virus, I am not satisfied when the illness has not gone away by mid-October, when I am down to just below 160 pounds. Eventually I am convinced that if this keeps up I am going to be back to 110 in a matter of months.....great, but I don't want to throw up doing it.

One night I am on the internet researching my symptoms. Gastroduodenal, a type of Crohn's Disease, pops up as the best key word and also the most of anything. I casually brought this to the attention of my primary care doctor....God love him, he has always listened to me through my neck/spine and gyno issues, and when he can't make the play, he passes the ball off to someone who can. He immediately makes me a referral to the gastroenterology associates. I also discuss my symptoms with a pal, Lindsey, who says that my symptoms mirror Crohn's....which she has.

Today, October 25th, I had my first meeting with the GI doctor. She asks me a serious of questions, but what concerns her most is the weight loss. I ask her about the possibility of gastroduodenal CD...."yes, doctor, even though I did read it on the internet." She kind of laughs it off and says that it would only be the second case she has ever diagnosed. Have I mentioned she's, like, 30? Anyway....yeah, I know it's rare. Like 4% of all Crohn's cases. So she throws Celiac's disease at me. A possibility? Well, I don't know....I can't keep down almost everything I eat! She orders bloodwork, an endoscopy, and a few more awesome tests, and prescribes a nausea pill that I have to wait till I get paid next week before I can pick it up. Blah.

So, here's my story so far. I don't know where I stand, and I feel kinda sucky because I feel like absolute crap physically, but I know you guys have an actual documented condition. It's so frustrating.

My love to you all, keep fighting the good fight. :hang:

 

[caligirl]

Hi Melanie - I'm so sad to hear all that you are going through - just doesn't seem fair, does it? Being undiagnosed is absolutely no reason to stay away from the support you can find here!!! Besides, having a dx doesn't necessarily mean that that's the final word - I had UC for years, had the colon removed to "cure" the UC, and now some 20 years later they are thinking I now might have Crohn's even though I don't have any of the markers. Remember, that's why they call it "practicing" medicine! Having great drs that you can really talk to is a huge help -- even though they don't always have the answers, it's another person to talk to who usually understands the misery you are going through with whatever the dx ends up being. Have you tried keeping a food journal to help determine what foods are easier on your system? I wish I had some better info for you, I don't, but consider yourself ((((hugged))))....

 

[mikeyarmo]

Welcome Melanie610!

I am sorry that the past few years have been so hard on you, but hopefully you will make some progress soon with your GI now.

There is a lot of good information and friends to be made here, so I do hope you keep posting!

 

[Melanie610]

Thanks guys. It means a lot.

Caligirl....at this point, honestly, I think rice, crackers, and chicken noodle soup are about the only things that are settling with me. Everything else seems to cause an internal uproar!

One question: Did anyone else ever get recommended the "BRAT" diet, and did anyone have problems with bananas or toast?

 

[Entchen]

Hi, Melanie, and welcome to the forum (and, you're an East Coaster, lucky girl! I'm from New Brunswick and had the pleasure of working in Southern Maine for two summers -- along the Saco). I really hope that you get some answers soon. You are welcome here whether your GI concerns turn out to be Crohn's or not. The time searching for answers was one of the most difficult times in my life; you are fortunate to have a physician who listens and refers, and you are getting needed tests, so this is a GOOD START.

Re. your question about the BRAT diet, I can take the two foods that you mentioned unless things are *really* bad, but I definitely cannot take the applesauce, even on many good days.

Take good care.

 

[lynx]

Hi, I know its hard and frustrating and believe me even when you get a "diagnosis" from very skilled doctors its not always the case. I was diagnosed with Ulcerative Colitis in 2006 during a nasty flare. I was just recently in the hospital for a month (missed the entire month of September) with a really nasty flare and now have been diagnosed with Crohn's Disease. They mimic each other in symptoms, nice thing is they also, for the most part, respond to the same types of treatments.

As for the BRAT diet. I tried it but then by way of elimination and from what I already knew as a kid, I found out that I am allergic to WHEAT. So no more wheat for me. I also thought that was the main reason for my problems. This was all found out in 2006 and 2007. I do not have celiacs disease though. There is a difference. From what I know most people know when they are really young if they have that disease or not. I think its something they test for you for when your a baby. I am not positive. My mom told me that.
The theory behind BRAT is that it adds bulk to your stool and slows down the movement through your colon and small intestine. In severe inflammation I don't think it helps a whole lot (my personal experience) but it may work for you. My GI told me also and I can quote him on this. "There is no diet for Crohn's Disease." He just meant there is no diet that is known to help everyone. Unfortunately you have to play the "does this work for me" game.

This place is a great place to come and troll for info, ask questions and get support and find some laughs sometimes...especially late at night when your steroids are keeping you up...lol.
I hope you get your tests back soon and you find relief soon!

 

[DustyKat]

Hi Melanie and :welcome:

If nothing else you are not alone! You would have seen that from the undiagnosed club and many of the members here that have a diagnosis would have belonged to that undiagnosed at one time so you will find many kindred here. I hope the tests reveal some answers to you. Good luck and please keep us posted!

Take care,
Dusty

 

[caligirl]

Hi Melanie - No, I never tried the BRAT diet so can't help you there. Believe it or not, when I was a kid in the hospital and recently diagnosed with UC, I was on a lamb, rice, and milk - can u believe milk??? - diet - ugh. Then they brought in a GI, who I have been his practice with to this day, and he told me to eat anything I wanted and figure out what worked for me as everyone is different. Back then, most drs were insisting on a regulated diet - I think my dr was ahead of his time!!! The one thing that has never let me down - soft boiled eggs - for some reason, I can tolerate those no matter how bad the flare. Boring, I know, but it's food and provides protein! I hope you find some answers soon....

 

[Cat-a-Tonic]

Hi again Melanie, glad you decided to post your story. As I'm sure you know, I'm also undiagnosed so I know some of what you're going through. I was also initially told that this is just a virus (hmm, a virus that has managed to last over a year now, that's one tricky virus) and I was recommended the BRAT diet as well. I do not do apples in any form, so it was more like the BRT diet for me. I didn't have any problems with that, bananas and bread and rice are some of my "safe" foods. If you're having problems with certain foods, you should definitely keep a food diary so you can track which foods or ingredients in foods seem to be causing problems for you. There's information about what data to include in a food diary in the "wiki" section of the forum.

Good luck on your upcoming tests! Let us know how it goes. What anti-nausea med did your doctor prescribe?

 

[bushydougie]

Just wanted to say hi.
I'm also undiagnosed although my GI strongly believes I have CD but we haven'f found it yet on any of the many tests I've had.
I want to wish you good luck and keep asking questions and finding out from others on here. It is a great place get info an support even if you're not diagnosed yet

Sam

 

[MADiMarc]

Well, the white coats are at it again. As someone said in a previous post, you have to find the foods that work for you. Eggs hurt me no matter what form they are in but someone else is able to eat soft boiled eggs as a "rescue food." (That is what I call foods that you can eat even when the crap is hitting the fan so to speak). My resuce food seems to be salty pretzels. I have come to the conclusion that the docs are as mystified as we are with this insidious disease. Don't give up and keep coming here for support. I just recently found this site even though I was diagnosed 26 years ago. It has helped me so much in the past week just to realize others are going through the same nasties! I know what it is like not to have "an answer" to your questions and to be wondering around in pain and having on idea what is really going on. I did that for a bit before they figured it all out. Keep the faith and try to focus on getting your answers...by any means necessary. Michele

 

[Astra]

Hi Melanie
and welcome

I had to look that up, never heard of it, and one thing that stood out was, relief came with eating or antacids, but that doesn't seem to be the case with you?
When I feel crap with nausea I resort to the low residue diet, which includes, rice, bananas and white bread, and also potatoes, white pasta and white meat like chicken, nothing coloured, no red meat, no fruit or veg, no alcohol, lots of water! Rice Krispies and Arrowroot biscuits are safe too.
And Hey! just cos you're undiagnosed, doesn't mean you're not welcome here! You can come and chat whenever you like Melanie.
lotsa luv
Joan xxx

 

[Melanie610]

Thanks so much you guys!!!

Cat, the doctor prescribed Zofran, but I haven't picked it up yet. It's in BC/BS' (my insurance) highest tier for non-preferred....ugh....payday is next week! I guess this week it's drink ginger ale and pray! :lol: My parents or grandmother (who bless her heart is dying of terminal breast cancer) may swing the co-pay my way. I do have a wonderful family; they have been my rock(s).

One thing my GI doctor did say was that if it eventually DID turn out to be Crohn's, it may take a while to figure it out. I think my head spun when I heard that. I've read horror stories of people waiting for years for a diagnosis, but if she believes that Crohn's could at all be a possibility, why would it take so long for a yes or no answer?

 

[Dexky]

but if she believes that Crohn's could at all be a possibility, why would it take so long for a yes or no answer?

Isn't that the $1,000,000 question!! There are some very thoughtful answers to that on here somewhere. I've asked the same thing. Good luck Melanie and welcome!!

 

[Cat-a-Tonic]

Melanie: Did the doctor prescribe actual name-brand Zofran, or the generic counterpart, Ondansetron? I take the generic version - if you've been prescribed Zofran, call the doctor and ask why they didn't prescribe you the generic version! Should be much cheaper on your insurance and it's the same thing!

As for why it takes so long to get a diagnosis, I'm still sort of trying to wrap my head around that too. I've been ill for over a year now with no diagnosis. I've had tons of tests and nothing has been found - no inflammation, no scarring, no ulceration - nothing. Sometimes the disease can take awhile to show physical evidence of itself, even when you're having bad symptoms. Symptoms aren't always indicative of inflammation, either - you could be feeling horrible but only have a little inflammation, and conversely I've read stories on here of people who didn't feel that bad but had massive inflammation. It's a tricky, confusing thing sometimes. Good luck on your upcoming tests - I hope you do get some answers.

 

[Melanie610]

Ah, yes Cat, I called CVS tonight to see if it had been sent in by the GI on Monday and it ended up being Ondansetron after all. WOOHOO! Dad picked it up for me on his way home from work.

Thanks for the well wishes!

 

[caligirl]

Hi Melanie - I know how hard it is to be so sick and not have answers. I suffered for a few years before finally being diagnosed with UC back around 1965. I had the j-pouch surgery 20 years later to eliminate the UC, but have had chronic pouchitis and ilitis for about 6 years. Now they are thinking I may have developed Crohn's - no markers but all of the symptoms...my gastro told me once that if he hadn't actually seen my UC for himself, he wouldn't believe I had it because so many of my colonoscopies came out clean - even though I was having horrific flares - these IBDs are so confusing, not just for the patients, but are challenging for the doctors as well. I really hope they can dx you soon - not knowing what it is can be as scary as knowing exactly what it is....take care and good luck! Please keep us all posted...

 

[Melanie610]

Oh wow Caligirl....over 45 years? I cannot imagine.

Well, I had my endoscopy this morning. There is some light. My GI doc showed me the pictures of my small intestine and stomach. All I saw was a lot of red and white....she told me my stomach had a lot of inflammation and some little ulcers that she had biopsied. Then she proceeded to tell me that what she could see of my small intestine was heavily damaged. Okay, good. There IS something there!! I am home in bed now and I want to sleep all day.

 

[Cat-a-Tonic]

Yay, sounds like you are going to get some answers! I'm jealous, ha ha. Seriously though, let us know what you find out. Good luck!

 

[sebelford]

Hi Melanie! I am new here as well, and I am the wife of a Crohn's sufferer. Sounds like the doctor ordered the correct tests, and your symptoms are a lot like my husband's. He would have diarrhea 2 to 3 times per meal, and on occasion throw up. He got down to 126 pounds and was admitted to the hospital before he was diagnosed. Keep at the doctor to get you a diagnosis and I wish you luck.

 

[Melanie610]

Hi all. :bigwave:

Sorry I haven't posted in so long....ugh. It's taken awhile for me to get new answers. The doctor told me to try and cut out gluten after my endoscopy. I did and it's NOT easy!! I'm not really feeling much better; there's a lot of burning in my lower abdomen. The bloodwork came back negative for celiac but she saw a lot of intestinal damage on my endoscopy and on my biopsies. She said something to the effect of not ruling out celiac's completely, or at least me being gluten intolerant anyway. That utterly confused me to say the least. She also wants to do a colonoscopy now on December 1st and check for signs of Crohn's. I guess it's crunch time. The burning is really confusing me though. My stomach was inflamed severely when she did the endoscopy so I've been on 80 mg of Prilosec a day since. This morning I threw up my a.m. dose. That hasn't happened before.

It seems like as the days pass I get sicker and weaker and it seems like it takes forever to get in for a procedure. The nights are unbearable and I can only get comfortable in the fetal position. I'm not sleeping well. I used to work 40 hours a week but between appointments and going home sick I'm lucky if I put in between 32 and 36 now. Oh, and forget about dating and meeting new guys....one dubbed me "boring" recently because I have no desire to "bust out". I feel like a disgusting blob.

Sigh. :lol:

 

[Nica]

Melanie,

Keep your chin up. I wish I had some magic words to say to make it better for you. Hopefully just being able to vent to others who have gone through it will help you.

Oh I got my DX after a colonoscopy (both of them!), so maybe there is and end in sight!

 

[Astra]

Hi Melanie

I got my dx after a scope too, so hang on in there hun, you'll have answers soon enough!
As for the dates, that one was a dick, but you'll meet the right one soon, a caring sensitive lad who will love you just the way you are! I promise!

If you carry on vomiting tho, think about going to ER, and you shouldn't be in so much pain like this, keep your eye on your temp too
xxx

 

[Melanie610]

Thanks loves!

Oh, the ER....my favorite place in the world. :lol: When I went in with initial symptoms in September I was told it was a virus. How they go from dismissing me with a virus to the possibility of Crohn's in two months....it makes me sick. I feel like I only want to deal with my primary care and my GI docs now because they KNOW me and I trust them. I am lucky for that. When I went to see my GI doc yesterday, she walked in and said "How are you?" I replied "Good...." and right away she said "Uh, that's a lie." She's met me three times and she can already read me like a book.

My "normal" body temp was always low, like 97ish....lately it has been anywhere from the high 98's to the low 99's, but I didn't think anyone considered that feverish. My mom always considered 99 a low grade temp but I read somewhere that doctors don't consider anything below 100F a temp.

Dates....ugh....Mel feels very unattractive right now! :redface:

 

[StarGirrrrl]

It does take a long time for tests doesn't it, there is a minimum 8 week wait for my colonoscopy, and in the meantime you don't get any better!

As for dating and guys, I have given up for now, even an online dating profile would be the most boring ever lol.

 

[Cat-a-Tonic]

Hi Melanie, I can totally relate to missing time from work! Between doctor appointments and sick days, I've missed more than my fair share. You may want to apply for Family Medical Leave - I recently got approved for FMLA myself, and it protects my job in the event that I need to call in sick, they can't hold it against me. And don't worry about applying for it while you're still undiagnosed - I'm undiagnosed myself and I got approved for it, all they really need to see indicated on the application forms is that you have an ongoing, serious medical issue that will necessitate you to call in sick more frequently than other people.

My usual temp is in the mid 97s too, and I always call the doctor if it's anywhere outside of that range. During my most recent flare, for some reason my temp was 96.0. After a phone call to my GI, my dose of Entocort was upped and I'm feeling a lot better now. So it can't hurt to call the doctor, and it doesn't cost anything either.

Glad to hear you're having a colonoscopy soon. I hope you get some answers from it! Let us know how it goes.