I'm confused about my progress

[embyrr]

Hi,
I was diagnosed with Crohn's disease at 13 and am now 26.
I've been in remission for years, with only basic hiccups but for about a year now I've been feeling quite different.
The stomach cramps and pains are more frequent. Nearly every day I wake up nauseous and will even vomit in the mornings. I'm having increasing trouble eating, to the point where I'm fatigued most of the time. Bathroom time is either too many times a day or not enough, and there seems to be no pattern.

I have an appointment with my gastroenterologist at the end of August since he couldn't earlier. I'm worried, though. It took me a long time to come to terms with the disease and to accept it.

Now it is having more of an impact on my life than it previously did.
I'm not sure why I'm writing - I'm just wondering if anyone has gone through a similar journey. I feel alone.

 

[embyrr]

I read somewhere that Pentasa can cause nausea, could all this be a side-effect of the pentasa?

 

[ronroush7]

Can you call your doctor and ask if they have a cancellation if they can pencil you in sooner?

 

[eleanor_rigby]

I wouldn't have thought pentasa would start causing symptoms of nausea after being on it for years. It may be losing its effect? Particularly given your symtoms, it sounds like you are in a flare.

 

[mellamoemily1]

Hi,
I was diagnosed with Crohn's disease at 13 and am now 26.
I've been in remission for years, with only basic hiccups but for about a year now I've been feeling quite different.
The stomach cramps and pains are more frequent. Nearly every day I wake up nauseous and will even vomit in the mornings. I'm having increasing trouble eating, to the point where I'm fatigued most of the time. Bathroom time is either too many times a day or not enough, and there seems to be no pattern.

I have an appointment with my gastroenterologist at the end of August since he couldn't earlier. I'm worried, though. It took me a long time to come to terms with the disease and to accept it.

Now it is having more of an impact on my life than it previously did.
I'm not sure why I'm writing - I'm just wondering if anyone has gone through a similar journey. I feel alone.

Hi!

I'm sorry to hear this but don't forget you are certainly not alone! I think in times of great stress or struggle we feel more isolated than usual. Don't forget you can always post here and get support here!

I have been feeling like I am on a similar journey. I was diagnosed a long while back and have had good periods of remissions and any random activity from the disease was always managable for years until the last few months.

Now, similar to you I have some days where I am visiting the bathroom much more than my old "normal" alternating with days where I don't hardly have to go in there. Some nights and days I feel crampy and stomach pains and other times I feel totally OK-- I think this is part of what is hard is that sometimes when you aren't running to the bathroom or in a stomach pain you feel mostly OK and think-- Oh, I'm ok! What was I worried about? Only to second guess it all 10 min later when you are in the bathroom!

Glad you made an appointment, but I agree with the comment above, the cancellation list could be a good idea! Maybe they can squeeze you in sooner. I know its sometimes hard to be upfront about symptoms, but sometimes telling them that you are experiencing lots of symptoms out of the norm helps them to know you are in need of an appointment. (easier said than done!)

take care and let us know how you are doing!

Emily

 

[embyrr]

My partner is going to have me see a Crohn's specialist - I've actually only seen gastroenterologists but never a specialist so I'm quite excited - this would only happen at the end of August as well.
I live in Brussels and everything shuts down in August...

@eleanor_rigby, I haven't been on Pentasa for years. I've always taken Asacol but switched to Pentasa in March because they don't sell Asacol in Belgium...

@mellamoemily1, thank you, I was having a particularly bad day yesterday and sometimes waking up and feeling like shit then continuing the day feeling isolated I can get pretty down. I know I'm lucky, though. It could be worse.

Thank you all for your messages - I just want to get some answers and make sure nothing's wrong.

 

[ronroush7]

My partner is going to have me see a Crohn's specialist - I've actually only seen gastroenterologists but never a specialist so I'm quite excited - this would only happen at the end of August as well.
I live in Brussels and everything shuts down in August...

@eleanor_rigby, I haven't been on Pentasa for years. I've always taken Asacol but switched to Pentasa in March because they don't sell Asacol in Belgium...

@mellamoemily1, thank you, I was having a particularly bad day yesterday and sometimes waking up and feeling like shit then continuing the day feeling isolated I can get pretty down. I know I'm lucky, though. It could be worse.

Thank you all for your messages - I just want to get some answers and make sure nothing's wrong.

I hope you get answers soon.

 

[embyrr]

@ronroush7, thanks. I hope you're doing well as well.

Just as a general question, does anyone have experience with Colitofalk?
My gastroenterologist told me over the phone that he could send through some prescriptions if I wanted to try a switch from Pentasa.