Advice needed

[malonebag]

Hi,

I was diagnosed with IBD almost 5 years ago now through a colonoscopy. I was told at the time that they could not determine what type (crohn's or UC) and since then I had never been given a definite diagnosis. Until yesterday!! My consultant recently retired and I met with his successor who told me I veer more on the side of crohn's which was news to me!! I have only ever had that initial colonoscopy and on the whole i have felt well more often than unwell over the past 5 years. The only medication I have ever been on is asacolon which i believe is not supposed to be very effective for crohn's anyway? I guess I have a mild form of the disease but i'm only guessing. My symptoms don't really effect my lifestyle and i have had periods of up to a year and a half where i have had no symptoms at all and no medication. My symptoms include blood and mucus this would be the main one (sometimes explosive) bowel movements but not too frequent sometimes with urgency but never any accidents thankfully and occasional cramps and bloating!!

My new doc is keen to put me on meds but I am so reluctant to take steroids or immunosuppressants due to the horrible side affects they can cause. My recent bloods didn't show much signs of activity although i was having some symptoms at the time which have now subsided. I could live with the symptoms with no meds but the problem is i'm not sure how much damage I am doing to my insides without medication.

What i am trying to get at is...if i am well most of the time and the symptoms seem to go away themselves then is there a need for medication or am i still doing damage that I am not aware of. Is one colonoscopy in 5 years the norm or should i have had more?

I am scheduled for another one shortly to see how things are so perhaps i will know more then and can make a more informed decision about medication.

Any advice, comments etc greatly appreciated :ysmile:

 

[nogutsnoglory]

I think you should make a decision after the colonoscopy. If your insides are not damaged and you can deal with the symptoms why take meds? If you are having damage it's important to start treatment because it can all go downhill pretty quickly. Medication is better than surgery!

 

[malonebag]

Thanks for the reply. Althought I have had this for 5 years I really don't know too much about it as when I am feeling well I don't really think too much about it. It's only that I have seen the consultant recently that the wheels have started turning again!! I should probably ask him all these questions but sometimes they can be a bit dismissive and hard to get a straight (understandable) answer out of. I am hoping the colonoscopy will have positive results that reflect how I am feeling but there is an underlying fear that whats going on inside is a whole different story. Anybody had any expeience of this?

 

[SarahBear]

Hi, welcome to the forum!

One colonoscopy every five years is a little bit of a stretch when there is active disease. One a year or every two years is typical, then slightly less frequently while in remission. Crohn's can cause damage while not displaying many symptoms, so it's very important to make sure you know what's going on.

It's also important to stay on top of your treatment. The potential risks and complications of untreated Crohn's are typically greater than the potential negative side effects of the medications to treat it. As long as stay under a doctor's care and notify them of any serious side effects, there's not much to worry about. Steroids can be frustrating, yes, but steroids should only be used for short periods of time if at all possible.

You can also look into altering your diet to help reduce symptoms and disease activity. You can read about that in the Diet, Fitness and Supplements section of the forum, here.

:hug: I hope everything goes well for you!

 

[malonebag]

Thanks SarahBear. I see you were diagnosed around the same time as me. I have been reading up on the various meds and the thing that scares me the most is the increased risk of cancer from immunosuppressants, i know there is an increased risk of it anyway with the disease and i can live with that and hope that with careful monitoring i would catch anything in good time. I can't justify putting myself at risk by taking drugs, to me it's like smoking even though you know it can give you cancer. Anybody know much about these risks - what are the chances?

 

[Kimberly1967]

I fought the meds for a long time as I was told I only had moderate disease. In the end I was sorry, and by the time I made that step it was too late. I was partially obstructed which led to a perforation and it required a resection.

I have been in remission for a long time but if I ever relapse, I will follow the advice of my GI doctor and take whatever they say is necessary to keep the illness from progressing.

I do know that people with IBD are already at an increased risk for cancer. My feeling is that with proper medical monitoring, you will be able to detect any changes early on.