Update and Opinions PLEASE! :)

[Holly]

Hello All
I'm not a long since diagnosed Crohnie, think I am into my 3rd month officially.
I am currently taking Pentasa 1g (4x a day) (and double dose of Iron (Ferrous Fumerate) but the Iron's irrelevant to my story really)

I had a colonoscopy last week which showed that the severe ulceration and disease that they found in the small bowel originally had cleared (which suggests the Pentasa is working and preventing) Woop! :dance:

But, the colonoscopy also showed more (a lot) of new severe ulceration and disease in the right colon. (A much larger area than found in the small bowel)
I was meant to be having a consultation with my Gastro yesterday but it has been postponed till the end of July...

So... Here's my question
When I do see my Gastro do you guys reckon in your experience that I will just have more medication added to what I am currently taking?
A stronger dosage of what I am on?
Or something completely new? or even nothing at all...
Just out of curiosity really cause I am impatient and can't wait till July

Oh, afterthought.. I am loosing my hair, it does say on the 'Very Rare Side effects' of Pentasa that you could loose your hair, but is this something that comes with the illness cause of lack of nutrients or do we think it is the medication?

 

[littlemissh]

Your hair loss may be related to your lack of iron. It is very common to lose hair when iron deficient.

The treatment you get next depends on where the disease was in your colon...do you know where. If towards the rectum they may try enemas etc. If not then steroids such as pred or budesonide may get you into remission +/- an immune suppressant like azathioprine. Each gastro has different ideas where treatment is concerned.

Have you rung your IBD nurse to ask for your appt to be sooner. When they are rearranged often it is the admin staff that do it without realising the patient should be seen sooner. If you don't have an IBD nurse then you could ring your consultants secretary and enquire.

 

[Holly]

I only have the basic Colonoscopy report given to me by the hospital and it just simply says 'right colon' so I am waiting to hear off the consultant where the disease and ulceration is specifically...
I have rang the consultants secretary and it is due to high demand of clinics that it has been postponed so I have been put on a list for a cancellation appointment but apparently that's the best they can do.

Interesting about the hair loss due to Iron deficiency.

 

[nikimazur]

Pentasa led to hair loss for me, as well as another melasamine, asacol hd. When i went off of pentasa for three months, my hair starting growing back normally, but recently added asacol back in, and now my hair has stopped growing as well. This combined with the whole malnourishment factor adds to hair loss. There is a post somewhere on this forum concerning hair loss...just search hairloss and you should find it


Unfortunately you are on the maximum pentasa dose, which is 4grams per day. This is typically when your doctor will add meds like entocort or prednisone. Pentasa is great, but a very "mild" Crohns med.

 

[Holly]

I really want my Gastro appointment to be moved cause I am still in flare since pre-diagnosis and I just want to get back to a normal life. I am getting better, and I can definitely see that but the pains I still get is ridiculous sometimes, and embarrassing if I am out with friends and I just suddenly bend over in pain and start deep breathing and popping pills. :/ Oh Crohns.....