Diagnosed 7 months ago and still struggling

[ErinLiz]

I was diagnosed back in September of 2013 with Crohns of the lower large intestine. I was initially prescribed Lialda (Mesalamine) and symptoms seemed to get better, but not to 100%. I am now on Budesonide for a short period of time, while still on another form of Mesalamine (Apriso), hoping to kick it into remission. Has anyone else had success with Budesonide or Mesalamine? I don't hear of these drugs mentioned much. Since this recent change in prescription though, my symptoms are back to being worse, but different. Now I'm experiencing very painful bowel movements. I've done a lot of research on food and how it exacerbates symptoms, but nothing I find seems consistent. I try keeping track of my own eating habits but it is really frustrating, since everything I eat seems to affect me. Does anyone have a gluten intolerance? I've been looking into that a lot to see if that is somehow linked, or if I'm just making it up. I'm also considering seeing an allergist to see if I have any other food intolerances that could be making this worse. Does anyone recommend I do that? This is a journey I did not want to be on, but it is what it is!

 

[Trysha]

Hello ErinLiz
Welcome to the forum.
Crohn's can sometimes be difficult to treat and you need a good GI that you see at regular intervals.
It is a bit surprising that you have not had tests for gluten intolerance and for some it can be a good idea.
Some foods upset some crohnies more than others. Some are not affected by food, everyone is individual in this.
There is plenty of information in this forum regarding dietary approaches and also
different medications.
Has your doctor suggested biologics such as Remicade or Humira?
None of us want to travel this road but we have to make the best of what we have and what is available to us.
Feel better soon
Hugs and best wishes
Trysha

 

[Romey]

I'm just entering my third week of treatment. My Crohn's was diagnosed 3/4. Mt GI immediately put me on :
40 mg prednisone (down to 30 now) .375 Apriso 1000-2000mg canasa (both are mesalamine)
My symptoms have improved, bleeding stopped, no diarrhea, but my colon is still inflamed. Doc says it will be until we begin the biologics 4/1 (insurance issue) I'd have been on it this week otherwise.
He's convinced only the use of Humira or Remicade will help my case to go into remission.
I'm choosing Humira.
I hope you get better. Yes, mesalamine had helped me, but only so far thus far.

 

[alyssa519]

Hi ErinLiz!
Looks like we have a lot in common! I was diagnosed last July and live in Chicago (currently, at least) as well! Feel free to message me if you want to chat ever =)

Have you gotten tested for a gluten intolerance yet? My doctor actually did that bloodwork before sending me to a GI. Do you have a good GI? I know that's a hard question to answer at the beginning of this journey...I'm definitely still figuring it out.
Have you talked with your doctor about your return of symptoms? There are many other meds that you might want to try even before biologics. My understanding if that if your disease is just in your colon, there are some good oral meds for that besides those you are on.

Worst case scenario, biologics aren't that bad! I started remicade about a month after diagnosis and it has seriously saved my quality of life. I actually look forward to getting an IV every 6 weeks (something I never thought I would say!). I was able to put all the weight I had lost back on and I'm back in school and functioning and overall feeling generally well for the time being, so if that's an option for you to look into, it might be well worth it!

Let me know if there's anything I can do for you!

 

[colin324]

Budesonide is a good drug, with far fewer side effects than pred. I was on it for over a year, and it seemed to get me into remission. I'm on sulfasalazine now, as my GI thinks it may help my joint issues (old rheumatoid arthritis treatment). It seems to be keeping me in remission.

We're all different, so you might find one drug helps you that doesn't work for someone else. The main thing is to discuss any issues with your Dr or GI. Sometimes doses need changing, or they need to go to a different medication.

After 10 years of crohns, it never fails to throw up something new and different when you least expect it !