My story, also posted on undiagnosed

[Jackie010307]

Hi, I'm Jackie. I thought I would introduce myself here as well. I'm 31, I've been married to a wonderful, supportive man for over 11 years now. We have 3 kids, 2 sons ages 10 and 8, and a daughter who is 4. My symptoms started with I was about 15 years old. At the time I was, and still am, 6 feet tall. At that time I weighed between 180 and 190. I played basketball and softball and had no health problems, other than sports injuries. Sports were my life and I loved them. That explains why I ignored some of the symptoms, fear of not being able to play. The other reason was hoping it would go away. I can remember when I stopped eating at school because it was sure to cause problems. I would eat only when I knew I would be able to get to the bathroom. I had horrible stomach cramps and diarrhea. After I graduated high school and went off to college things actually got better. Looking back I think that's because I was under much less stress after I left home. My home growing up was, let's just say not very nice or happy and leave it at that. While in my first, and only but that's another story, semester of college the symptoms went away, and while eating the wonderful way college students tend to, I gained about 50lbs. No, that wasn't good and put me overweight, and I have been overweight since. I recently lost about 30lbs, but that was because I was trying. Shortly after leaving college after fall semester 98 I moved out of state, met my now hubby, and married. We ended up living half way across the country for his job, but we were happy. Symptoms were minimal until 2003, after our second son was born. That was when it got worse. He would often be woke up at night by my crying in the bathroom. The cramps were so bad it felt like childbirth. On top of that I had already had 2 back surgeries for completely herniated disks, and ended up having a 3rd in March of 07. I had a severe bone infection after the last surgery that wasn't found until October of that year, and I did 9 weeks of vancomycin. During that time the bowel/stomach symptoms were gone. Fast forward to help make the story a little shorter, if possible! In 2010 I found my biological dad, and found out I have a half sister. My half sister was diagnosed with severe crohn's disease about 16 years ago. After looking it up I thought maybe that was my problem, so I made a gi appt. Dr did some blood work, told me it was negative for celiac, did a colonoscopy said it was normal, and my problem is that I'm fat. He wouldn't even listen to the fact that the symptoms started before I gained weight. That was just over a year ago. Last week I went to the er with severe left side and left abdominal pain. Dr thought kidney stones, did ct. It showed 6cm cyst on left ovary, confirmed size and that it wasn't torsioned with u/s and sent me home with pain meds. That was last Thursday. Tuesday went to ob/gyn, followup u/s showed cyst was 3cm, but pain was same. Having odd bowel issues, too. I would go, but it wouldn't be a full bowel movement, I'd have to go again a few minutes later, and again a few minutes later. Then it turned to complete liquid. Went to a new gi. He said a colonoscopy cannot rule out crohns and he's doing an egd on the 31st. I also have a lot of blood work to get done. As of now bowel movements are somewhat formed but very mushy, but much smaller in diameter that I can ever remember them being, much thinner. Oh, in the past I have tried dairy free, it seemed to help for a while, then not. I've also tried gluten free, which seems to help sometimes, but not always. If you've read this far, THANK YOU! I just don't know what to think. Hoping for some answers soon, though.

Edited to add: I was found to be b-12 deficient about 6 months ago by a neurologist. I have migraines and he was looking for a cause. No cause was ever found, however I have been on b-12 injections monthly since.

 

[Angrybird]

Hello Jackie and welcome to the forum, you have definetly come to the right place I assume the new doc can tell you right after the egd about what they have seen? I am curious as to what they say especially with the B12 deficiency as this is a common problem for us crohnies. I am glad you have a supportive hubby, that is so important at times like these. I hope you get the answers you need really soon and let us know how you get on.

 

[mikeyarmo]

Welcome Jackie!

Thank you for sharing your story here where it will be seen by more members. I hope that a diagnosis will come soon for you as have had to live with this mystery far too long! It is great that your husband is so supportive also.

I know you said you have avoided Dairy at times, but were meat, fish and eggs a good part of your diet prior to your B-12 defficiency diagnosis? It sounds like it is very possible that you were having an absorption problem, which is a typically problem for people with IBD.

 

[Jackie010307]

Meat and fish yes. My neurologist is who found it and he asked if I were a vegetarian or had ever had weight loss surgery. Nope, neither. We don't do eggs in our house, our 8 year old has a severe allergy to them, but he said it had to be an absorption issue. Honestly, I'm sure I ate more meat than I probably should have, but have cut down recently. He referred me back to my gp, but he'd already sent me to a gi who said there wasn't a problem, so I was started on injections without anyone looking any further for an answer.

 

[mikeyarmo]

Hopefully your new GI will help you figure this all out. Until then the B-12 injections should help you maintain better B-12 levels.

 

[Jackie010307]

I'm supposed to get a slip for blood work to check them when I get this months, so I'm hoping they are where they need to be!

 

[Fozzyboy]

Hello Jackie thanks for sharing. I know how frustrating this can all be but it sounds like you found the right GI doc. I had a bad go with doctors as well one told me it was because I was overweight as well and another even told me my symptoms were probably caused by me swallowing gum when I was a kid. Like you I had bowel issues when I was a kid and at 17 I was diagnosed with fibromyalgia and we just figured it was part of that but as I grew older it got worse. About 6 years ago it started to get really bad, i even spent my wedding night in the hospital. Long story short after suffering from prolonged severe bleeding and vomiting we went to the er and by chance met my current GI doc who immediately said I had crohns after a scope. He explained that not all biopsies show it and that my numbers were right on the border. I have since been trying different treatment but the bleeding and inflammation has gotten so severe so today I had a mediport placed, my veins are shot and next week I start remicade.
So I know how your feeling but once you find the right doctor things get easier because you start to feel as if a burden has been lifted that a doc believes you and is listening and not blaming you that in of itself is a big relief. Hope they can get you feeling better keep us posted