Too many symptoms

[lils]

Hello!

This post turned out longer than I thought so you can skim it if you want.

I haven't been on here in a while but that was probably because I was in remission since I was 16 and I'm now nearly 24. I was diagnosed at age 12 with UC, which was re-diagnosed as crohn's a year later.

I know not all of us are doctors but I figured I might as well ask--see if anybody else has gone through this/has ideas.

Last time i posted here I was newly diagnosed with mono--that was probably in the end of 2012. Everything went away and I was still in remission from crohn's. By mid 2013 my mono went away (i know the virus stays in the blood forever or so I'm told). Before my mono I had headaches all the time but they seemed to stop when I was sick. A month or so later, after being cleared, I went to an urgent care hospital because I just felt horrible (weak, tired, dizzy, headache No stomach pain though) and the results said my B-cells were abnormally large but not to worry.

I apologize that this post is kind of scattered, by the way.

So, I ran out of my 6mp for a week in January (I'm on it now) and just starting maybe two or three weeks ago feeling as if I were having a flare up and mono combined. I can't even explain. It's not like my stomach was in as much pain as one of my normal flare ups--I usually feel sharp, throbbing, aching, sour and burning all at once but this time it felt like I just had weird bubbly acid like food poisoning kind of. I'm so nauseous but I haven't thrown up much (trying not to because I'm 95% recovered from Bulimia. These symptoms aren't from recovery since I'm pretty much out of the 'withdrawal' woods and recently had an EKG to make sure I was okay). My stool is tar colored and goes back and forth from hard to soft each time I go to the bathroom. Speaking of which, I am going more than I have in a long time. I feel like I'm going more than before I went into remission but, again, it's been six, almost seven years since.

I am getting confused with my post--my memory and attention aren't great either now. Let me just list my symptoms.

-Tar/black colored stool - switches from soft to hard during the day

- loss of appetite - trying to force myself to eat

- weight gain - I'm not on any new medication, I'm definitely not eating more than normal but not eating too little to go into starvation mode. Active/exercise as I have been before the weight gain. I usually fluctuate up and down 5 pounds but within a two or three weeks I gained maybe 13lbs or more?

- headaches every day (like before mono) and only semi relieved with medication but for a small bit.

- chest pain (I had an ekg so I'm fine with that)

- fatigue

- weakness

- once in a while balance issues (not quite so much but I couldn't walk one day. It could have been because I took a bit too many headache pills in a short period of time the day before)

- Dizziness/foggy feeling/dazing out

- I feel like it takes a few moments for what people are saying to register in my brain

- nose bleeding. Sometimes just a little and sometimes gushing

- achy joints, which is totally normal for me but I thought I would throw it in here.

- dry throat

- that stomach pain I talked about

- night sweats and chills

- waking up super early but still really fatigued.

and just generally feeling horrible.

I've never felt these many symptoms with a flare up. I know I should go to the doctor and I have but I don't have a pcp (I need to make an appointment with my GI and he wants to transfer me to another since he's pediatrics and I'm now an adult. I'm so sad since I've been his patient since I was 12). Witht he EKG I went to the ER and everything was fine. They put 'myalgia' as a diagnosis on my discharge papers. For those who don't know myalgia is 'a symptom of many diseases and disorders' according to the internet.

I'm just so lost, feeling crazy because of the unknown diagnosis. I've been to two different ERs in two weeks (my therapist sent me to one because I nearly passed out in her office) and they came up with nothing. Granted, the first one had to boot me out because three severe emergencies came in. I had a psych evaluation in the second one and I checked out fine (I do have anxiety, depression and so on).

Do you think this could be just a bad flareup? I'm not bleeding--the first ER checked by tar colored stool and found no blood.

I am going to make an appointment and sorry this post is so long. I just need to get this out to people and I know this community is a great place to.

 

[DJW]

Hi lils. Sorry to hear your having a rough time. You could be flaring but I'm no doctor.
I had a hard time going from my pediatric GI to an adult GI. But it worked out great.

Hope you start feeling better soon.

 

[lils]

Hi lils. Sorry to hear your having a rough time. You could be flaring but I'm no doctor.
I had a hard time going from my pediatric GI to an adult GI. But it worked out great.

Hope you start feeling better soon.

Thank you! I'm so sad to leave Dr. Winter (from MGH/NWH) he's a genius and diagnosed me within a few days. My next appointment is going to be my last with him.

 

[Hope345]

without a doubt something is not right.
My first guess is that you are very anemic.
You should take a very aggressive approach to find out what is going on currently. It seems the GI's can get a little "lazy" if they think they have done all that they were suppose to.
Something is not right for you now and their job is suppose to be to help you get back on track.
I would be guessing but with the nose bleeds it almost seems like your platelet count might be low as well.
I would suggest starting from scratch again and have them run as many tests as possible from vitamin levels, CBC with diff, liver set, c-reactive protein, complete metabolic set, sed rate, ggt, stool cultures, c.diff, an MRE and probably another colonoscopy... you can get copies of all your tests and past tests to compare. keep a file if you havent already. also, look at the pictures from your colonoscopies and compare.

These are just suggestions, hopefully your GI will do all of this. Everybody is so different and what happens to each person, when it happens and what brings it on seems to be different as well.

Treatments are fairly standard across the board. They will probably need to give you prednisone to bring down the inflammation. They will want to start a biological which may be needed for a while to see if you respond.

I am so sorry you are going through this. I hope you have people (family) close by to support you through this. You need their help!!! you are a sick girl and need to get things back on track.

We have a 15 year old daughter that has been diagnosed with Crohns and currently U.C. she has flared for almost 3 years straight with only 2 months of remission. She has tried many of the big meds with no real remission. We are moving towards a different approach. It eliminates the biologicals that bring down the immune system and we are trying to bring up her immune system. Her U.C. is strictly in her rectum so we are able to have her use cortifoam instead of prednisone. We also believe in the theory that many are taking that this is caused from a bacteria, mainly M.A.P. (mycobacterium Avium Paratuberculosis).

Let us know what your GI's say and what tests they do.
best to you

 

[Cross-stitch gal]

I too am sorry to hear all that you're going through. It is difficult making the transition from a teenager/child to an adult and I too have been there. There are many on here in that situation right now though. I'd encourage you to check out the young adult support group on here. This group mainly has those in their 20's, but there are a few of us in our 30's as well. Please let me know if you need to talk. :hug:

http://www.crohnsforum.com/showthread.php?t=57196

 

[lils]

Thanks guys!

I should probably make my appointment now.

EDIT: made the appointment and called just in time! He only had one spot available for this week.