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My history with un-diagnosed Crohn's

Hi, everyone. My name is Niky. I am 29 years old, and I have been trying to get a solid diagnosis for about 6 years. Some important information from when I was younger, that from my research may or may not be related:

I had an immune disorder when I was younger called infantile hypogammaglobulinemia. There are multiple types of this disorder, but the infantile type generally goes away or decreases as you get older. Basically, this meant I was constantly sick. I had chickenpox three times while growing up. Something that would put most kids down for a few days would put me down for weeks. I had constant bladder infections, constant lung and sinus infections, got the flu and stomach bugs all the time, etc. From my reading, studies show there may be link between this and Crohn's. Now that I am older, it is not as bad. I stopped getting sick constantly when I was about 12 or so. Though when I do get sick, I seem to get sicker than most people do.

I have been getting painful boil like lumps in my arm pits, groin, and inner thigh since I was about 14. Sometimes they go away on their own, sometimes they have to be lanced. Since I have frequently not had insurance, most doctors blow these off and no one has ever bothered to diagnose them as a specific condition. Upon recent research I have done, though, I think it might be something called hidradenitis suppurativa, which studies show may also be related to Crohn's disease. These lumps are very painful, and often make it hard to function. I have also in recent years occasionally developed another strange skin rash that appears on my legs, chest, neck, elbows, and sometimes other places. This will appear during a flare up, and is itchy and sometimes sore. I am not sure what this is, but I assume since it appears during flare ups, it is Crohn's related.

I also get frequent sores on the gums and in my mouth, like cancer sores. I have had several very sore throats over the last few years with no positive strep test. Usually when this happens, the lymph gland under my chin swells badly.

I have also had frequent kidney stones since I was about 22. I think I have had a total of 13 or 14. I have sort of lost track.

The first sign I had of unusual symptoms was while I was pregnant with my 3rd child. (I have 4 girls.) I had morning sickness with all my kids. But this was different. I had extreme nausea, abdominal pain, and almost constant diarrhea. My OBGYN simply passed it off as IBS, even though there is a family history of Crohn's. (My mother and my aunt both have it.) Though my symptoms got a little better after she was born, I still dealt with bouts of vomiting and diarrhea at least every few months.

This got worse when I became pregnant with my youngest. (She is now 4, they were pretty close together.) I had constant nausea and diarrhea, accompanied with severe abdominal pain. It got to the point where I couldn't eat or keep anything in, not even water. I love 30 lbs in three months. Finally, I was admitted to the hospital when I was 12 weeks pregnant, and had my gall bladder removed. I was relieved because I thought this might fix the problem. It didn't. Some of the pain subsided for a few months, but the nausea and diarrhea continued. After my daughter was born, the nausea got a little better, but the diarrhea did not.

For about 6 months after she was born, everything I ate seemed to go right through me. I had heartburn all the time. Sometimes this heartburn would get so bad that it would wake me in the middle of the night, and I would barely make it to the trash can by my bed to vomit. At this time, my ex husband and I started divorcing. This stress seemed to make it worse for a few weeks. I lost another 25 lbs in about a month or so.

I was really careful about everything I ate for a few months. I barely ate much, actually. Just things you would eat when recovering from an upset tummy. I met the man I am currently with, and he suggested we cut out pork and beef, since they are so greasy. This did seem to help me a lot. For a while, most of my symptoms disappeared. Though I still had at least one minor bout of diarrhea a week. For about 5 or 6 months, I functioned pretty normally. I began to think that whatever was going on had cured itself. I was wrong.

One day, while starting a new job, I began to experience terrible stomach cramps, starting about at the bottom of the stomach, and rolling down. It was awful, but I stayed the whole day at work and tried to smile through it. (It was a retail job. So I had to seem happy.) That night I called my mom, who is a nurse, and she mentioned it might be appendicitis. It seemed more severe than my prior symptoms, so I thought it might be. She said to have my fiance push on a certain spot in my stomach, to see if the pain got sharper. When I lifted my shirt, he noticed a golf ball sized lump above my belly button. I had never noticed this, and kinda freaked out, so we went to the ER.

At this point, I was vomiting almost constantly. They sort of blew off the lump, saying it was probably scar tissue from my gall bladder surgery. They had me drink this nasty stuff, that I couldn't really keep down. They had given me meds for the nausea, but it was not working. Though they thought I might not have kept enough of it in for the test to work, they still ran a scan. They saw nothing, and told me to start taking prilosec, because i probably had a bad ulcer or something.

A few days later, despite being sent home with phenergan for the nausea, pain meds, and the priolosec, I was vomiting so much and in so much pain that I went back to the ER. I had no insurance, and couldn't get a regular doc to see me. This cycle went on for a few weeks. I would get desperate and go back in. They would tell me I needed to see a GI doc, but I couldn't find one to let me make payments. Eventually, one doctor told me I was faking to get pain meds, despite the fact that while he was saying this, I was vomiting in a sick bag right in front of him, and had lost 15 lbs that month, according to their records. This entire time, I would run a low fever, about 100. The docs kept saying it was not high enough to really consider, and blew it off.

Eventually, after starting twice the reccomended dose of the prilosec, and downing two bottles of pepto a week, I managed to get my symptoms somewhat under control again. I was only vomiting about once a week. This lasted about 8 months or so.

Then, I started to get the pain again when I ate. Diarrhea started back up. And almost every night, I would wake up with such severe pain and heartburn that I would vomit in the trashcan by the bed. I went back to the ER. I once again was told I was faking. I left in tears. My husband, having seen me suffer, almost got escorted out by security. He was furious. I started to think I was never going to get an answer. I upped the prilosec again (Three of the over the counter size pills twice a day.) This eventually helped with the nausea and heartburn, but the diarrhea only partially subsided.

This cycle has gone on for years. It will go away or get better for a bit. Then it comes back. The week before my wedding, I got so sick that I almost cancelled it. I was in the middle or a flare up at my wedding, and had to leave my own reception early because I was so miserable. I have stopped going to the ER. I managed to get insurance when we moved to Louisville a few months ago. Had an appointment set up with a GI doc for the beginning of December. The week before Thanksgiving, we had a house fire. We lost most everything, and had no place to stay down there. So we had to up and move back here so we had a roof over our heads. Thus, I missed my GI appointment. The state of Indiana does their requirements for medicaid differently, and I probably don't qualify here. I cannot use Kentucky Medicaid here. Since we are just getting back on our feet, I cannot afford insurance at the moment. I have applied for the medicaid but my hopes are not high.

The stress after losing our house was so bad that during Thanksgiving, I couldn't eat. I lost about 12 lbs in once week. I am feeling somewhat better at the moment. But I am really discouraged. I just want someone to diagnose me. I am about 99 percent sure I have Crohn's. I want to get on some meds and get on with my life.

There is a free clinic here in town for those with no insurance. They can refer me to a GI doc. I have an appointment with them January 14. They said after they see me and refer me out, it could take months to get me in to a GI doc. I am trying to find a job for the first time in a year. I have been an online student through a local college here, because when I get sick, I cannot make it to class. The last job I had I lost because I missed to much work when I was sick. Right now I am experiencing some minor symptoms, no major flare. But I am really worried that if I find work, I will lose my job shortly after if I flare again.

I am really discouraged. I am starting to think I am never going to get any answers. Doctors don't seem to care if you don't have insurance. I want to work so I can afford insurance. (I get it for my kids in Indiana, but they won't give it to adults unless you have zero income, and they count my student loans with my hubs income, and they say that is too much.) But every time I think I am well enough to work, I get sick again. It is like this cycle I cannot escape. I want to work. I want to get out and do things. I don't want to have to be afraid that I will have a flare up and everything will fall apart. I don't want to have to be constantly scanning for bathrooms when I go places so I know where to run if the need strikes. I know many of you probably know how I feel.

So, this is my story. I know it is long, and sort of rambling. I am sorry for that. I don't really talk to anyone about it, because most people don't understand. They think I am exaggerating. Or they just don't get it. And it isn't exactly the most pleasant subject matter.

I would love to hear from other people going through the same thing. I would also love any suggestions anyone has on how to get someone to diagnose me, or any home remedies or things you might have tried yourself that help alleviate symptoms between doc visits. I might have a job starting here in a few weeks, waiting to hear back for sure. And I really don't want to get sick and lose it. So any suggestions are welcome.

Thanks for listening.

Niky
 
I think the worst part is the waiting. Sending many hugs your way, hope you can get some answers soon
 

David

Co-Founder
Location
Naples, Florida
Hi there Niky and welcome to the community.

Wow, you've been through so much, you poor thing. :( Stories like yours are so saddening and frustrating to hear. I wish January could come sooner for you so you might get some answers.

In the meantime, my suggestion would be to check out our diet forum and look into the paleo diet, SCD diet, or juicing. Another option would be to look into our Enteral Nutrition forum.

Please keep us updated as to how you're doing. We're here for you.
 
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