Bummed out

[michelle28]

Hey everyone, I was diagnosed with crohn's in november. I believe I have had this disease for almost 10 years, but no doctor's took me seriously and just said I had IBS.
In the past 6 months Im on Imuran 200mg, pantoloc, prednisone, and tylenol for pain. I am meeting with a surgeon in 3 days to see what my options are. I was wanting to get surgery on my small intestines, but I am nervous. Can anyone give me any feedback? My other option is humira? Other opionions??
This has also been very hard in my place of work. I am a hairstylist and my bosses have told me that they don't think I am a realiable employee. Needless to say, I feel like im walkin on eggshells! I'm sure everyone has been through this with this disease. I just feel alone.

 

[Adam1971]

Hi Michelle-

Welcome to the forum, and sorry to hear about your diagnosis and the difficulties it all brings. I have often felt alone and misunderstood since getting sick. It seems if we don't look sick on the outside, its hard for others to understand.

Whta kind of problems are you dealing with that might mean surgery? What does your GI doc think? What tests have you had? Just curious. I know many forum members have a lot of experience with all of this. I only have a little. The treatment forum and ibd discussion are both good places to look around.

Best wishes.

 

[DustyKat]

Hi michelle and :welcome:

I am so very sorry to hear of what you have been through and for so long too! :hug:

I assume that the current meds aren't working?

What are your symptoms?

I have two children that have had resections on their small bowel but there was no choice in the matter due to the complications they had. Having said that they have both had wonderful outcomes and have been in remission since their surgeries, 6 years and 16 months respectively.

I will say though that given the option of trying the biologics I think I would have gone down that path first before considering surgery. Surgery is final, what is gone is gone but in your situation it really does come down to what you are feeling, how you are feeling and most importantly of all your quality of life. Surgery is usually considered a last resort and I do believe that that is how it should be BUT by the same token I don't see the point of holding off and persisting with options that don't work. Surgery is no guarantee of remission either but if you do go down that path hopefully you will be like my children and gain a lasting remission.

Good luck hun, these are awful decisions that have to be faced but just know you are not alone, you will find many kindred spirits that have trodden the same path and know exactly what you are going through.

I am sorry to hear about your work too, certainly an attitude you don't need on top of everything else.

Dusty. xxx

 

[michaelearnest]

Do you have a GI and a Primary Care Physician?

 

[Thermo]

I agree with Kat surgery is final there is no going back and it is a quick but rough recovery. Not to mention the chance for Bile acid malabsorption when your Ileocecal valve is removed. That is the part that will forever change you, but it should not scare you as the symptom improvement vastly (I mean vastly) outweighs this complication. I would personally recommend the Humira, I read a surgical study that found a big reduction in post operative complications after a patient has taken Humira. So you may still need surgery in a year but it will give Humira the chance to clear up some of your disease so they don't go in there and remove more than is needed. If I hadn't of been on Humira for a year before my surgery I probably wold have woken up with a stoma, and that is something you want to try and avoid as much as possible, and Humira can help.

 

[David]

Hi Michelle and welcome. Everyone else has covered everything I was going to say but I wanted to stop in and welcome you.

We're here for you

 

[michaelearnest]

Michelle - you were on 200MG of Imuran?