So tired of this, I need help

[dahlfacepoet]

I'm 23, joined this forum a year ago and everyone has been tremendous help to me. I am not being treated anymore. I've been undiagnosed with indicators of crohn's but nothing conclusive, according to the GI that ordered those tests almost a year ago.

Now he has taken me off all medication without warning and cancelled my appointment without telling me. I do have a balance with his office, and I don't mind at all paying for his service, but that hardly seems like a reason to completely drop all treatment without discussing it with me first. I was on 9mg of Entocort, 25mg of Amitriptaline as a sleep aide, and 50mg Tramadol 3x a day.

I have to look for a new GI now. I have an appointment at the end of this month with a new GP and I really hope he can help me.

I just don't know what to do. Now that I'm off the Entocort I feel awful, worse than before. I have d way more often now no matter what I eat. When I was being treated I had my d down to once or twice a week with fairly regular stools the rest of the time. All stool is hard for me to pass though, it causes so much pain and pounding in my head every time I'm on the toilet and I never leave the bathroom feeling like I've removed all my stool. It is awful, but at least it was tolerable.

I was able to call my gyno to get a tramadol rx because the pain is so bad I can't eat or sleep and my body goes into withdrawls since I've been on tramadol for a year now. I just don't know what to do anymore

On top of all of that I am having awful neuro symptoms like daily migraines and tremors. I can't keep up with this. I know how difficult it is to dx CD but I never thought I'd suddenly be without treatment like he left me. How do I go about getting a second opinion now? Should I pay the balance and switch to someone else in the office? I kind of don't want to do this because I'm afraid they will just agree with the previous GI's tentative dx of diarreah predominate IBS.

I'm so, so tired. I feel so, so alone and abandoned. I thought doctors were supposed to help us.

 

[TammyKathleen]

I am so sorry and outraged to hear this happened to you! This is my worst nightmare and that a doctor did this to you with no advance notice is horrible.

Whether you had been diagnosed or not, you were being treated as if you did have IBD, and it sounds like your symptoms were improved by your treatment and you responded well. I truly am so annoyed that the official diagnosis is withheld when someone is being treated as if the diagnosis was in place!

You are going to feel awful and tired from the lack of tramadol alone, which is another blow your doctor dealt you. Because after a year, you will have developed a dependancy (which is not the same as addiction).

How bad have your GI symptoms gotten? If you are bleeding, or feel obstructed, a part of me thinks maybe if these things are really bad, you could go through the ER and diagnosed by the GI in the hospital? Or at least possibly be able to speak to another GI.

Have you called your doctor to see what happened?

My thoughts are with you.
~Tammy

 

[dahlfacepoet]

Thank you Tammy, I appreciate it. I'm so angry he did this to me.

I noticed blood in stool about 2 days after I ran out of Entocort. I had been taking it since October, it did help but not enough to get me off the tramadol or do any of those other things I was expecting from a steroid. I asked for something stronger (specifically pred) but he refused since he wasn't certain it's CD.

And he's charging me for a no show on a colonoscopy which I called and cancelled it a week before it was scheduled. Id been unhappy with him for a while now, but he seemed like he knew what he was talking about.

He won't talk to me. I talk to his PA or the woman that does all his rx's and ask to talk to him and all they tell me is no. It sucks because everyone agrees the office is the best in the city.

I am keeping track of my symptoms closely just in case. I have successfully stayed out of the ER since these symptoms started, but I know that if I stay untreated I'll have to go. I've told myself if I faint again I'll go, If I see a lot of blood, I'll go. If I feel obstructed I will go. I don't have safety net anymore and it's terrifying.

 

[Cat-a-Tonic]

Dahl, I agree with TammyKathleen, please do go to the ER if things become worse. They (or your new GP) might prescribe you pred, and in the ER they might even put you on IV steroids if you're bad enough to need it. As for your old GI stopping your Entocort cold turkey, that's deplorable. Yes, Entocort is a relatively mild steroid, but you still need to taper off of it! Stopping it cold turkey when you're on the max dose is not good and I'm not surprised to hear that you're worse now, that really sucks. I was on the stuff for 7 months myself and had several failed attempts at tapering before I was able to come off of it without flaring myself, so I'm sure it would be way worse just stopping it altogether and I really feel for you. Big hugs! Maybe if you're not bad enough for the ER, you could try an urgent care/walk in type clinic? I've gone to urgent care many times and they can do IV fluids and prescribe meds and all that good stuff, so they might be able to at least tide you over or prescribe pred and that would get you through until your GP appointment. At any rate, I hope you're able to get some relief and proper medical care soon, what a crappy situation. Poor thing, sending you a big hug. Hang in there!

 

[dahlfacepoet]

Thank you Cat! That's a good idea, I hadn't considered urgent care. I went there first when I became sick, because I haven't had a GP until 2 weeks from now, but all they did for me then was determine I did not have an infection and that I was not pregnant. Maybe they can do more now that we're assuming to be dealing with IBS. I don't think I should have been on the Entocort max dose for as long as I was, he never mentioned tapering to me, but I've done my own research and I was really surprised that he just took me off it completely.

I'm excited for the GP though. I made the mistake of saying I was healthy before symptoms started. I thought I was, but the more you think of your past the more you remember. I was taken to the ER when I was 14 for abdominal pain, which they gave me morphine for but then said the pain was because of gas. Then a couple years later I had abdominal pain and awful constipation, it was 5 days before I had a BM, I went to urgent care for it and they determined I had IBS. Which I never took as a real diagnosis because it was just an urgent care doctor who knew nothing about me.

Oh and I did experience rapid onset of hypothermia... and I live in a desert! This happened twice on two highschool band trips. I hated when the second time happened because everyone thought I was faking, because how does a girl get hypothermia in the desert? But both of those times I was on my period.
Not that it's related to anything, but it could be, if I've been anemic and not absorbing what I needed, then a period would do stuff like that.

So a new GP is a new pair of eyes on me, and hopefully someone that will listen to all of my symptoms.

Sorry I feel talkative and have no one to talk to. My honey is wonderful but I'm tired of talking about my illness with him. He can't completely understand, no matter how much he wants to. Thanks for the support, I'm so grateful for everyone here.

 

[Jennifer]

Hi dahlfacepoet!

Bleeding is not a symptom of IBS plus as mentioned, you responded to the Entocort so its likely you have some inflammation going on and with IBS only microscopic inflammation is found (most doctors wouldn't even notice it). So to be frank, your IBS diagnosis is crap.

Glad you get to see a new GP though. I'm sure they'll get a referral going to a new GI right away and I doubt it would be in the same office as the old one because specialists don't generally take other specialist's patients from the same practice (one of those unwritten rules). Hearing about the bleeding etc. will definitely get you a new referral so no worries there.

While you're seeing the new GP have them run a full blood panel checking your CRP and all your vitamins (like Iron, Calcium, Potassium, Folic Acid, Magnesium, Zinc, Vit A,B,C,D and B12) to make sure you aren't low in any of them cause they can cause all sorts of undesirable side effects (including weakness, fainting, headaches etc.). You might also want to ask for a referral to a Neurologist for the migraines and tremors to be on the safe side in case its not IBD or nutrient related.

If you ever question going to the ER, GO. Besides getting a prescription for Prednisone or pain killers they can also run tests there like a small bowel series/barium swallow with x-ray, blood work, stool and urine samples etc.

Keep us posted and good luck!

 

[dahlfacepoet]

Crabby, as far as I understand IBS, if the dx was correct, I wouldn't have lost over 50lbs in the last year, losing 30lbs in the first month and I've been struggling to gain weight ever since.

So far pain is manageable. I was able to get a tramadol rx from my gyno, not sure if I said that. I'm down to 2 a day, which is uncomfortable, but I can't get another rx until my new GP on the 30th so I'd rather be in pain a little each day, than go days on end without it. Plus the dependence my body has on tramadol. Going through withdrawls is not favorable right now.

I hate this heat it makes me a prisoner in my own home. I can't go out unless the sun is down and it's cool enough. If I have to go out, the heat makes all my symptoms worse. I feel nauseated and tummy sick and get a migraine.

The days are counting down. I so hope this doc can help me and start treating me for the pain right away. Maybe something for the migraines too!