Crohn's Disease Forum » Support Forum » Undiagnosed Club » I am still searching for answers!

03-06-2014, 03:22 AM   #1
Join Date: Mar 2014
I am still searching for answers!

Hello well this will probably be a long drawn out story over years of suffering that I hope at least one person can relate to and understand my daily struggle. I am 31 years old with 4 children and I have suffered as long as I can remember with at times EXTREME stomach pains, constipation, diarrhea, swallowing problems, digestive problems since I can remember. There has been times that seems worse than others and I have went to doctors had upper gi with barium..lower also. Both upper gi I had my esophagus dilated due to scar tissue after being told that I couldn't swallow was "all in my head". That was when I was approximately from age 15 to 18. I had had severe severe stomach pains before where I could of sworn I was dying and my mom would take me to ER doubled over in pain in waiting room for hours at a time..crying to have a simple Xray to be told again and again "it was all in my head". For two whole months I couldn't swallow not even my own saliva it felt like "was all in my head" until I had upper gi to show extreme narrowing of my esophagus. I am probably going to say things that are very personal but it's in hope to steer me in right direction to find some answers. Like I said I am 31 now and it wasn't until 8 months ago I started to feel the worse I have ever felt in my life and everyday gets worse. 8 months ago I had my first son and my first c section. Every since then I have had nonstop chronic diarrhea. In December I had another "stomach attack" as I call them that was far by the worse yet. I felt the usual "oh my I have to go right now" I get to bathroom sir down..and have by far the worse stomach pains and start cramping and sweating so profusely I have to strip my clothes off. I was in so much pain I open door to yell for my husband and in so much in pain and tears I could barely call for him. I was saying "god help me..Please help me" I almost passed out 2 or 3 times from the extreme pain. My husband asked if I wanted him to call squad. I I had been through this before..maybe not quite this bad but I knew it would eventually pass. Then I kept going and then was pure blood. I thought then I should go to ER because this never happened where wouldn't stop with blood. I go..get CT shows colitis and inflammation of mmy intestines. I'm admitted..started on 2 iv antibiotics..seen by general surgeon I work with. She tells me she can't do colonoscopy during my hospital stay because my intestines are too inflamed and I would need to wait two weeks. I have 4 days of iv antibiotics and sent home with same orally that I took for 2 weeks I felt better than I had felt in awhile. I went to follow uup where her PA seen me and said that would do a biopsy to look at under microscope to give me definitive answer. 2 weeks later I had colonscopy. You would think this doc that works along side me would acknowledge me. She acted like she never seen me. I had test thinking I would have some answers to wake up to them saying that it looked biopsies taken and I was fine. I seen this surgeon few months later in icu at was like light bulb went off and she asked how I was feeling. I was in tears and said "I feel no better if anything I feel worse the diarrhea has never stopped and the fatigue is getting worse daily and now is almost debilitating". Her office called me very next day to schedule the camera pill test to look at my small intestine. I feel like this is what this is..All these years of symptoms and now getting worse makes the most sense to me. I am just hoping this test will give me a definitive diagnosis so I can start receiving the correct treatment. At this point I feel like I am dwindling away to nothing. My fatigue is becoming debilitating and affecting my quality of life. I am just curious if anyone's story sounds similar and if they struggled withrreceiving diagnosis and treatment and if they ever felt like they were at their wits end. At this point I feel absolutely worthless to my family and helpless. I just feel so very sick. Thank you for llistening and any advice I will take very seriously. Thank you again
03-06-2014, 08:20 AM   #2
Senior Member
Saralr's Avatar
Join Date: Mar 2014
Location: Appleton, Wisconsin

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If you haven't seen a GI I would get an appointment with a GI. I had to fight with my doctor to get a referral but its worth it for me. I'm finally getting somewhere. A specialist just knows better what to look for.

I can't relate to everything you've been through, but I've had my fair share of days stripping down on the toilet and then laying on the floor of the bathroom naked because I'm to weak to do anything after.

I turn 38 this month and I waited this long to insist on seeing a GI. I accepted the fact that IBS was causing these symptoms. My GI talked to me for 5 minutes, felt my belly and could tell that I did not have IBS. No matter how good your doctor is, a GI should be better.

Good luck. I hope you get a diagnosis soon.
03-06-2014, 11:17 AM   #3
Senior Member
Join Date: Nov 2013
Location: Monongahela, Pennsylvania

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Hello! I been their ! I went to a surgeon for years. My late mother In law thought he was great never wrong? We'll he was my PC doctor. This in the 80s/ 90s, I would eat a Italian dinners at her house and spend most of my time in the bathroom. It wasn't till I got sick at work and my doctor was on vacation so sent to another for blood work went to work. Within and hour got a call to get to the ER fast! I was bleeding out. Lost two pints of blood. And needed blood. They found that I would eat then everything cames out! The gi doctor ( who I still have), said you have Crohn's disease . That day I fired two doctors that!! The one wanted to put a bag on me. The gi doctor said No let's try meds. ( also I tried another gi doctor) who could not find anything, and wanted to test all over! no fired him. Also that doctor did not give enough meds. And I felt the Whole colonoscopy :so I was crying heretical my husband had to hold my hand to the or room. When my new doctor read my records on what happen he was upset Never felt anything! Now I get photos each time. I have a crohns doctor also. ask for your records Get mad. Or get tuff and call your dr and ask questions or name of gi doctor, or look on line at crohns foundation and look for a crohns doctor like I did. I hope I did not ramble on. We have story's I have lots more haha. Take care I hope I help? maria

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