Confused and needing adivce

[JodieB]

When I was told that what they believe I have is Crohns, I was in the Colorectal Surgeons office being seen about two very active abscesses with a fistual that needs to be fixed. When the dr told me that what I have is Crohns and that is why I am getting so sick with infections all the time it felt like it was an answer.
Well now that I have been left to my own devices until they can schedule the surgery I am left confused and unsure what I am supposed to do when a "flare up" happens. The last two days I have been cramping and had a hard stool on Tuesday - this triggered me to take a stool softener because I was told one of the worst things I can do with the infections is to have a hard stool - so i took the softener. Well about 7.5 hours later I was in the fetal position in pain. it took an hour before I was able to pass anything and have been uncomfortable since. The cramping is continuing and I am bleeding when I have a BM, not to mention it is somewhat excruciating. So my question is to all of you - WHAT DO I DO?
- should i follow a certain diet? I already have restrictions not being able to have wheat because of an allergy and i've researched and try not to have raw fruits and veggies.. but what else can i do?
- do i go to work? I am a kindergarten teacher and I stayed home today but is this something that I should be concerned with and stay home and rest more?
What do I do? Does anyone have any suggestions? I'm so confused and uncomfortable and kinda scared.....

 

[exit4]

There are many meds that can help you with pain, heal and treat fistulas and abscess.
Do you have a GI that you work with? What is your treatment plan - what meds are you on? Have you had a colonoscopy, blood work, etc. to confirm that you indeed have Crohn’s? Abscess is a serous external manifestation of Crohn’s and should be treated as soon as possible – when I developed an abscess I went to ER and it was lanced and drained by attending colorectal surgeon.
I am on Humira and feeling great – no more pain, blood, fistulas or abscess.
Still have some urgency but it’s a lot better then before.
Talk to your GI and tell him all your symptoms, if you are not getting good answers – get another GI. I recommend seeing GI’s affiliated with a teaching hospitals –they are up on the latest research and some see more people with Crohn’s on a regular basis.
Good luck to you – if you are in pain go to ER!

 

[Jennifer]

Did you have bleeding (ever) before you took the stool softener JodieB? On a scale of 1-10, how bad is your pain? For me if the pain is really bad and the bleeding is sudden then I go to the ER. There they can treat the pain, give you fluids/nutrients through an IV and run tests such as blood work, stool samples and generally a CT scan or small bowel follow through. They send these results to my GI plus this gets me a sooner appointment/treatment plan from my GI (if you're about to have surgery they may make the surgery date sooner).

For diet during a bad flare, eating softer foods like soups can help reduce symptoms. Liquid diets in general are helpful so you may want to talk to your GI about your liquid diet options such as Enteral nutrition or other supplement drinks (you'll have to read labels to make sure none contain any gluten or anything else you can't tolerate, Ensure Clear may be possible).

As for working, that depends on how you feel. If you feel up to it then go ahead but if not then staying home may be best. You'll likely have to go day by day. Tylenol only helps so much for pain and since you're bleeding I wouldn't suggest any stool softeners or hardeners until your GI has figured out a treatment plan. Have you told your GI that you're in this much pain and that you're bleeding? Knowing your symptoms will help them treat you sooner.

Keep us posted on how you're doing.