Insides burning...

[JoFowler]

I am going through a lot of symptoms right now, but I am only five days away from my Remicade infusion. I am at the point where I am not sure if I just suck it up and wait or seek medical attention. I will try and make this long story short and to the point.

All of January, I had a mild sensation of food sticking in my throat. In the last week, it got really really bad to the point I was trying to hack up stuff after eating anything. My family Dr prescribed Tecta and a soft food/liquid diet, and referred me to my GI, as she feels I need a scope done.

My GI Dr. said he would book a scope that would take two months, but felt strongly the Tecta would clear it up and I would likely be able to cancel the scope. He feels it is a ring in my throat caused by acid reflux.

I had Remicade infusion on Feb.11th, and a few days later my throat cleared up. I started taking one Tecta instead of two. (I am also taking a Ranitidine 150 daily). I had been taking two Tecta daily for a little over two weeks. So unclear whether it helped or the remicade.

I had once instance in March where after eating steak one night where I got that feeling that it was sticking again, but it went away in a couple of days.

Monday that just passed, I was up at 3am for the rest of the night with really bad "D" I had in fact soiled myself while sleeping. I have only had "D" twice since starting Remicade 15 months ago and this was the worst. It was extremely painful during the episodes- I was bleeding and it burned like crazy.

It stopped later in the day and left me weak and tired and a very sore bum I am getting occasional throbbing and pain at the site of my old abscess. Then I developed the burning in my stomach after eating(haven't had this since I started Remi) which is now radiating constantly through my chest and back since Wednesday. I am barely eating as everything is causing a lot of pain. I also have lower right side pain- sometimes front, sometimes back and occasionally left lower side too. This ride side pain I used to get weekly episodes of before I was diagnosed.

I have doubled my Tecta and Ranitidine and gobbling Gavescon. I don't drink or smoke. I normally drink two coffees a day, I had none for a couple of days and one the last two days(trying to have energy for work!) I know it says no caffeine but I didn't see any difference when I skipped altogether except I was more tired. Even a glass of water to take my pills sets off the burn.

Oh also, I had very bad back pain the week leading up to the night of "D" and it was completely gone when that started?

So I wait it out for five more days and hope I can start eating more before then? It's nearly the weekend so I wouldn't get into Dr today anyway.

Is this all just acid reflux? At what point do they say okay we need to do something else or more?

Also, if Remi clears me right up again, which is great, and then I get the call for the scope- will it show nothing and they then think everything is fine?

Crohn's sucks!

 

[mish2575]

My father had that burning feeling and the throat and it turned out to be severe ulcers. I'd go in as soon as possible.

 

[Jennifer]

If the burning is in your abdomen then you may be dealing with a partial obstruction (partial because you're still passing some stool). Have some tests done as soon as possible to make sure there isn't a blockage somewhere. Obstructions can cause really bad back pain as well. If it gets worse over the weekend or if you start vomiting or have a fever then please go to the hospital as those are signs of an obstruction.

My last obstruction they thought it was reflux too. Two weeks later I was hospitalized with an obstruction. I did have abdominal burning, nausea and back pain before I finally went to the ER. Vomited once I was in the ER. CT scan showed the obstruction and I was admitted. Be careful and keep us posted.

 

[mish2575]

Any update Jo?

 

[JoFowler]

Yes, sorry. The intense burning eased off over the weekend. Up until today, I felt kind of weak and achy in my joints and still had that pain in my lower right side. Today, I feel "better" overall, and tomorrow I get my infusion.

One thing I noted on Friday night when I was really chilly when my hubby was hot- my temperature was 95.5. Lowest I have seen it! It was up to 97 the next two days.

I will be mentioning everything to the nurse tomorrow and ask her at what point do I go to hospital while waiting for the scope.

Thanks for asking!

 

[nogutsnoglory]

That's odd about the low temperature. I have been down to 96 and doctors weren't concerned. I think they are really only concerned with elevated but would only be concerned with lower temp if its hypothermia.

 

[JoFowler]

Update: I had my infusion on Wed, and within an hour of leaving, all my joints except my wrists were killing me. For the rest of the night. Extra strength tylenol did absolutely nothing. Finally at 9:30 I took 2 painkillers- which I haven't had to take any for many many months. Normally I go to bed after infusion and sleep til 8:00, grab some supper and go back to bed for the nioght. This time the pain was so bad I could not sleep until after I took the painkillers.
I then woke up at 3:30 am and couldn't sleep again, but the pain wasn't as bad.

Usually the second day after Remi(which would be today) I feel a remarkable difference in my body pain and energy levels. I will say the brain fog has cleared somewhat, but still having joint pain. Not too intense for the most part, with the exception of shooting pain that comes and goes.