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Crohn's Disease Forum » Support Forum » Undiagnosed Club » New here, and my long story!


01-24-2012, 09:36 PM   #1
Jackie010307
 
Join Date: Jan 2012
Location: Buffalo, New York
new here, and my long story!

Hi, I'm Jackie. 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.
01-24-2012, 10:19 PM   #2
mickey
Senior Member
 
Join Date: Dec 2011
Location: Illinois
You are right on target to look at your diet. However, it took you a while to get her, so it will take a while to get back on target. gluten free, sugar fee, grain free, corn free, etc. is going to possibly be a life long diet, to get life results. Look at the ingredients in what you drink, as there are so many additives and garbage in that. Eat well and pure and your health will greatly improve and weight drop off. Yes, certainly the additional weight will add additional problems, but you had issues beforehand, as you said. The weight will add pressure to your body, so that makes sense that if you have an inflammed organ, for example, the added weight will cause more pain.

I would highly recommend "Bikram Wind Removing Pose" (google) and bellyl rubs added to your daily regimen. It will get circulation to the area and help your body heal itself or move things along. Be good to yourself! Good luck!
01-25-2012, 05:09 PM   #3
Cat-a-Tonic
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Join Date: May 2010
Location: Madison, Wisconsin

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Hi Jackie, welcome to the forum and the club. I'm glad you've got a new GI who seems to know his stuff. He's absolutely right, one colonoscopy cannot rule out Crohn's. Crohn's can manifest anywhere from mouth to anus, so it could be hiding out in your small intestine. It also has a skip pattern, meaning there will be patches of disease in between healthy tissue. In other words, it's sometimes very difficult to find and that's why so many of us here are still undiagnosed! (Myself included.)

I'm assuming you've told your new GI everything you've mentioned in your post? Especially stuff like the "skinny poos" (can indicate narrowing or a stricture) and the fact that you've got a family history of Crohn's. B-12 deficiency can definitely be a symptom of Crohn's so it's good that you're on injections. I'm undiagnosed too, but I thought I should mention that I also started getting migraines when this gut illness first hit me. I'm sure the two must be related somehow. Anyway, I'm rambling. I hope you can get some answers soon! Hang in there and good luck on the 31st!
01-25-2012, 05:38 PM   #4
Jackie010307
 
Join Date: Jan 2012
Location: Buffalo, New York
I know I forgot a few things, but I was and am still in so much pain it's hard to think of everything. My husband is helping me make a list, and he will make sure the dr gets it when I go in for my endoscopy the 31st. Oddly, my migraines only started about 2 years ago. They are accompanied by some hearing loss in my left ear so I'm not really sure if they are related to the stomach symptoms. No really sure what's going on in my body an if everything could be somehow related of if I just got unlucky several times!
01-25-2012, 05:51 PM   #5
Cat-a-Tonic
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Location: Madison, Wisconsin

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Do you only get the hearing loss during a migraine? I get the weird visual stuff just before a migraine, and then during the migraine I have high sensitivity to light and sound. It's freaky. My aunt has Crohn's and she also gets bad migraines. I don't know if the two are related for sure, but for me they both came on at the same time so it seems like too big of a coincidence, you know?

I'm glad your husband is helping you out with making a list, he sounds very supportive. Writing a list is a good idea so that you don't forget anything (I always write 3 lists - what my current symptoms are, what meds & supplements I've been taking, and what my questions are for the doctor).
01-25-2012, 05:58 PM   #6
Jackie010307
 
Join Date: Jan 2012
Location: Buffalo, New York
The hearing loss seems to be permanent. I've been to several ear nose throat drs and a very good neurologist and no one has any answers. I don't have any visual auras with my migraines, but end up so dizzy just standing up is a challenge. Our 10 year old has complained of visual disturbances twice now that his pediatrician said sounded like visual auras to him, but he didn't have a headache. All his tests were normal. Hubby is very supportive. Honestly, I don't know what I'd do without him. He currently has knee problems (torn meniscus and acl) but is doing his best to make sure that whatever is wrong with me isn't urgent before he schedules his own surgery!
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