Crohn's Disease Forum » Support Forum » Undiagnosed Club » New kid on the block.

03-20-2012, 03:39 PM   #1
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Join Date: Mar 2012
Location: Chicago, Illinois
New kid on the block.

Sidenote: this is really long, I tried to keep it as short as possible but even then it ended up being about 2,500 words typed. I'm sorry.

Iíve been waffling with posting here for awhile now, but after seeing the amazing outpour of support that you guys all give one another I felt like maybe I should say something now, instead of later.

I really donít know where to start with all this. Iíve had tummy troubles for as long as I can remember, but most of it was attributed to an anxiety disorder. The older I got the worse it got, but I could always seem to keep it under control. Then about 8 years ago it just got out of control. I couldnít keep anything down, my stomach HURT it felt like someone was trying to rip my insides out with a knife. I would go months with these episodes and then they would subside and I could go back to living life as normal and forget all about them.

So then about 5 years ago I ended up in the hospital, because I was once again unable to keep anything down, couldnít deal with the pain and was having these mini blackouts and such. They told me they were going to take my gallbladder out, so imagine my surprise when the next day I was told I could go home. At that time I was only 20 years old and really didnít know what I was doing, I didnít say anything and itís something that I regret not doing every day. I should have questioned WHY they were releasing me, instead of seeing it as a ďHECK YES I CAN GO HOMEĒ type of thing.

2 years and MANY ER & doc visits later Ė I still had my gallbladder, still had the episodes of pain, vomiting, and diarrhea, and now I have a new doctor. I go in to see her, and the first thing she tells me is that I need to drop some weight. Now I donít know how many people have ever had to deal with a doctor whose primary concern was that they were overweight, but let me tell you for this doctor it was the root of all my problems. Jessica has the flu, oh itís because sheís overweight. Jessica is blacking out, oh she needs to lose weight. Jessica has a sever ear infection, must be all that fat in her body. Seriously, it seemed like EVERYTIME I went to see the doctor she would tell me to lose weight. Now at this point most people would have gotten another doctor, or something. However the wonders of being uninsured and having to pay out of pocket means that I got to keep her for quite a while.

Finally one day I was at work and I started having this pain in my chest and stomach. It got so bad that I fell to the floor and clutched my chest thinking I was having a heart attack, I ended up back in the ER and was told I was just having some heart murmur issues and that I would be fine. Imagine my surprise when the next night I was woke up at 4am SCREAMING my fool head off, it hurt so bad I thought I was going to die. Rushed back to the ER and turns out my gallbladder was inflamed and had to be removed. Finally I thought I would get some relief. All was going to be well.

Nope, that was a fools dream. Still every 5-6 months I was having the same pains, the diarrhea, the vomiting and the blacking out. I kept ending up in the ER, because I now had no primary care doctor and that was the only thing I could think to do. There isnít much in the way of health care around here when you canít afford the 50$-75$ co-pays or whatever + the cost of whatever medication the prescribe you.

Alright, so now weíre about to last summer timeline wise. I was admitted into the hospital because I was in so much pain that WHILE DRIVING I blacked out and puked all over myself. I donít remember calling my best friends dad, I donít remember talking to him as I drove myself to the hospital, all I remember is the pain. I was admitted and they ran some tests, thinking that it was possibly a burst ovarian cyst or something. Nothing was found, and I was told that I had just probably pulled a muscle in my groin, how groin pain = stomach ache and everything Iím not sure but okay. Theyíre the medical professionals Iíll take their advice.

Then again, taken back to the ER because I blacked out at a friends house during a bonfire. Same thing, probably just an ovarian cyst or a kidney infection. Drink more fluids, youíll be fine. 4 more visits to the ER and to the local health clinic. Nothing was wrong, they just kept waving me away. Well by now at the 2 ERs in our town I am labeled a drug seeker.

Which brings us into this year, and where there is finally some light at the end of the tunnel. End of January, Iím back to the same old thing. Puking, pooping and blacking out. There were days where I was so tired I couldnít even get myself out of bed to go to work or school, anytime I would stand up or sit down I would get so dizzy. I just felt like crap, but I kept pushing it off. No doctor, no money and no point in going to the ER or anything. I blacked out again while driving, I donít remember HOW I got into the Walgreens parking lot, I donít even remember leaving the school. My stomach hurt, I couldnít keep anything down and I was just miserable. But I still kept pushing on.

And then I collapsed at work. Straight up fell down in front of everyone. I came too holding my stomach crying about how badly it hurt, and in a wheelchair. I was sent to the ER yet again, and I was terrified.
This time I was lucky and my grandma was with me, when we met with the ER doctor I told him EVERYTHING that Iíve just told all of you. I cried on him and seriously just let it out. I was embarrassed and in pain and I just wanted it to feel better NOW. Within 20 minutes of me being there, he had me ordered for a catscan with contrast, something for the pain and something to help me with the fact that every time I moved I felt like the world was going to end and I was going to puke. (Dear lord I love zolfran)

I was once again hospitalized, because from throat to anus I was completely inflamed, severely dehydrated and for pain management. While in the hospital I had to go through all the embarrassing things that I know many of you have gone through. Every time I had a bowl movement I had to page for the nurse, they had to come look at it and see how much was there. Multiple times per hour, they would come and check it. I felt horrible and so embarrassed. They ended up taking a stool sample, and more blood than a vampire, and scheduled me for a colonoscopy and an endoscopy. The sad thing is that with the colonoscopy prep, I didnít even need to drink Ĺ of the bottle. I was already pretty much cleaned out from being sick. The nurse said that she had never seen someone run clear so quickly before.

The day before the procedure I got to meet one of the doctors from the group that would be doing it. I told him straight up that I donít have insurance, and donít know how Iím going to pay for any of this. He told me that based on my symptoms he thinks it might be either Chronís or a Colitis, and that I would need a doctor like him and we would cross the bridge of payment when we got to it. He then talked to me like a human being, which at this time made all the difference in the world to me. He asked me about Jessica, not about the sickness, and he told me about himself and his partners. Just that little bit of kindness really REALLY helped me not be so afraid.

The procedure wasnít so bad, I just cried a lot during it because having the tube in my throat gave me a panic attack, but one of the nurses stayed with me and kept rubbing my face like my mom used to when I was little and it really helped.

A day later and I was released. I still was having poop issues and everything but I could now move around a little bit better and the pain was pretty manageable so they said that with nothing else to hold me on.

Two days after being released from the hospital I got a phone call from the health clinic, and they told me that I had tested positive for salmonella, and that I needed to keep taking the antibiotic that the hospital had prescribed to me. They asked me about where Iíve eaten and all that and then hung up. WHAT!?! I had never been prescribed an antibiotic, and hadnít eaten out or anything so I wasnít sure WHERE I could have picked it up at. Went back to the health clinic and talked to the head doctor there, she sent me back to the ER because it hadnít been reported to them and since it wasnít reported properly I needed to get it looked at. Because of the improper report, I had to tell work and school and call and inform my best friend who had just had a baby, because according to the file I had something worse than just food poisoning, I was highly contagious. That was seriously more embarrassing than anything I think Iíve gone through yet, to have to call my boss, my school counselor and my best friend and tell them that I could have put people at risk.

Once back to the ER with the note from the head doc in my hand I was treated like complete crap. At the end of that visit all I took away from it was that it was my fault that I was sick, and I didnít do what I was supposed to do. Got a script for an antibiotic and away I go.

So now I get the call from the GI doctorís office, and I need to come in. Great, okay. So I go in and tell them about everything that had happened and they tell me that well they know Iíve got some form of IBD but theyíre not sure which one. They tell me that the salmonella was probably a false positive but to finish the antibiotic anyway. They want me to start on a prednisone taper and asacol. Fine, I remind them that I do not have insurance and that I will be paying for all medication out of pocket. The medication was hella expensive, 780.00 for the Asacol alone. I wasnít able to get that filled but was able to get the prednisone. They also weighed me, and from the time I had been hospitalized until about 3 weeks later I had dropped nearly 50 lbs.

Once on the medication I kept having issues. I didnít think it would go away immediately but I also didnít expect to start passing whole pills and everything either. So I called the doctor, was told to go straight to the ER. Once there I get treated like crap again. They didnít take me seriously, the ER doctor kept calling it a ďstomach bugĒ when I politely corrected him and told him I was told that I had an IBD he shrugged it off and told me to eat more. I was never so boggled in my life. Eat more? How much more could I eat? Nothing I ate would stay down, not even plain water. I cried the whole way home that night. Called the doctors office in the morning and was put on another antibiotic and a probiotic.

So the stomach ache is still here, and Iím still best friends with my toilet. There are days where I want to sleep in the bathroom so I donít ever have to go far. Itís embarrassing and I think Iíve cried more the last few weeks than I did the entire time after my mom passed away.

I go back to the GI doctor tomorrow for a follow up and I donít have anything good to say. Iím still not feeling well. Iím at my ropes end with all of this. I look like a blimp, even though Iím losing weight my stomach swells so badly that I canít even fit into my clothing, and the clothing that I do fit into at the beginning of the day by the end of the day is either too tight of is falling off of me.

Iíve gone back to work on short shifts, but have had to call off more than once, and I donít qualify for the FLMA because I havenít worked the appropriate amount of hours yet this year, even if you combine them with last years. And school is a whole other ordeal, Iím just really thankful that my professors are understanding.

Iím back to completely relying on my grandma to pay for my bills and stuff. My last paycheck was 38.00, just enough to get my medication filled and some of the juice that I can keep down. Iím feeling lost and just like a crummy human being.

Thank you so much for letting me pour my heart and soul out here, Iím sorry this is so long. But I just had a lot to get off my chest and I donít really have anyone else I can talk to about it. Nobody else in my life really seems to understand.

Anyway hi. Iím Jess, 25 years old and currently running the undiagnosed circuit, but hoping for something tomorrow. Not really holding my breath though, because Iím sure that Iíll just be disappointed.
03-20-2012, 04:26 PM   #2
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Hi Jessica, welcome to the club. Wow, you have sure been through the wringer, poor thing! I hope you can get somewhere with your appointment tomorrow.

One thing that pops out at me - most people don't pass entire prednisone pills undigested like that. So that makes me wonder, perhaps you're so inflamed that pills just won't absorb into your system right now. There is an IV version of prednisone (I think it's IV hydrocortisone), so perhaps you can ask about that at your appointment. It will probably cost more than the pill version, but it might get you some relief and reduce the inflammation, at least to the point where you can take the pills again. Pred is great in that it's systemic, so it'll literally reduce inflammation anywhere in the body, but it has to be absorbed first, and it sounds to me like absorbtion could definitely be an issue if you can only stomach juice right now and are losing a lot of weight.

I hope you can get a more firm diagnosis and some proper treatment and relief soon (and insurance too!). I can relate to the money woes, even with insurance the meds and tests have cost me thousands over the past 2 and a half years. I got to the point where my GI decided I probably have IBD, and rather than put me through more tests, he put me on meds instead to try to get me into remission. It sounds like that's where you're at, although clearly the meds haven't worked for you yet. If I can offer you some hope, I am in remission and have been feeling well (for the most part) for almost a year now, so it's possible to get into remission even without a firm diagnosis. Good luck, big hugs to you, and I hope you can get answers and relief very soon! And again, welcome!
03-20-2012, 06:54 PM   #3
Join Date: Mar 2012
Location: Boston, MA
Wow, hon you certainly have been through a ton of stuff. I am so sorry for that. I am very newly diagnosed, so I don't have a ton of knowledge to offer, but I did want to send good vibes to you for your appointment and I really really hope you get the answers you need. The blacking out thing seems like it would be of huge concern to a Doctor, I don't understand why they continue to pass it off like this. Keep us posted on what you find out!
Living in the 'burbs of Boston
Mama of two tiny humans
Crohn's Dx, March 2012
Terminal Illeum thus far...
Prilosec 1/day
Pentasa 2/3x day
Still trying to make sense of all the supplement options
Hating my guts currently
03-20-2012, 09:47 PM   #4
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Join Date: Mar 2012
Location: Utah
Hi Jess, welcome to the forum. I am so sorry to hear what you have been through. I hope your gi dr and you get this figured out soon. I fired my first gi as I had to fight the C Diff infection for 6 months before getting the final diagnosis of Crohns. Maybe you have both? Don't give up on finding out whats going on. I hope you feel better soon. Take care
03-21-2012, 01:16 AM   #5
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Location: Minnesota

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Hi Jessica. I'm sorry you're going through all of this. I agree that when you're undiagnosed, a lot of ER docs treat you like crap. I remember one ER doctor pulling my mom aside and telling her I needed to be treated for anorexia. I hope you can find answers and get the treatment you need. Can you apply for medicaid? I don't know what they have where you live, but in my state, they have low/no cost insurance for people who don't have any otherwise.
Crohn's Sucks!
03-25-2012, 05:29 AM   #6
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Join Date: Mar 2012
Location: Chicago, Illinois
I want to thank everyone for the kind words, seriously they help so much. I am currently in the hospital. The drs appointment went really well, and the doctor was just as nice and accomidating as I remembered him to be. We talked treatment options and adjusted the levels of medication along with a diet plan. When I left there Wednesday night I was hopeful although tired and just real run down.

Woke up Thursday in pain but shrugged it off, the pain got worse so by Friday afternoon I had to call the doctor back and tell them that I could barely move. They sent me back to the ER where this time at least I was treated like a person instead of a bother. Admitted for pain management and because I have gone from having a BM 10-15 times a day to not at all in 3 days. No blockage but they are testifing me for C-Diff along with several other infections.

So we shall see what happens. Please excuse any typos.or random periods typing this.from my phone is hard. I will try all updated.

Edit to add - applied for the medical card here and am.waiting to.hear back on it. Should know.sometime this week.
03-25-2012, 06:20 AM   #7
Join Date: Mar 2012
Location: Boston, MA
I am so glad to hear they are taking you seriously! You definitely need support and answers, not being made to feel as if you are a bother. Good luck, keep us posted!!
03-25-2012, 04:17 PM   #8
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Join Date: Mar 2012
Location: Chicago, Illinois
I just got thenews I do have C-Diff so I'm currently in isolation at the hospital. Pretty sure that I'm gonna have to drop my classes at the local college. I didn't think I could feel any worse but I do.
03-25-2012, 07:10 PM   #9
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I'm so sorry to hear that jess I hope they start some treatment soon and it works quickly.

2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
03-31-2012, 08:35 AM   #10
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Join Date: Mar 2012
Location: Chicago, Illinois
Well, I'm out of the hospital and have a bit firmer diagnosis.

I did have C-Diff, and so far am responding to the medication so they're hopeful that I'll only need one round of antibiotics.

And they were able to solidify my diagnosis of Ulcerative Colitis, the doctor will be scoping me again once the C-Diff is gone so that they can for sure rule out Crohn's, because he seems to think that it may be that more so than UC, but I will cross that bridge when I get to it.

I have a meeting Monday at the college to drop my classes, a couple of my teachers emailed me and told me that they are willing to work with me if I can just do my work from home, but I'm waiting to see what the school says about how that would effect my FASFA.

And I have an appointment with my local Public Aide place in the beginning of April so that I can hopefully get some form of medical assistance because without it I won't be able to afford my medication. *Fingers crossed on all that*

I'm home now and am able to actually be on the computer so I can go around and comment on other peoples posts easier, but I want to thank you all for all your kind words. Seriously last week in the hospital was like the longest week of my life. <3
03-31-2012, 08:42 AM   #11
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Thanks for sharing. Hope you feel better.
Mom to Danny (16), sick since Dec 2008 but current diagnosis uncertain.

(Danny's story)

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