Honesty please, what's the worst thing that can happen to us with UC?

I'm one of the 25% that needed surgery. I am a 33 year old female with no children. I started playing sports at the age of 6 and have led a very healthy life.

I was diagnosed with UC about a year ago in July of 2016 at the age of 32. I initially went to the doctor thinking that I had food poisoning. After that, I was able to manage the symptoms with suppositories.

In January 2017, things deteriorated quickly over the course of a week. I started flaring badly. I never really had much pain though - just had to go to the bathroom all the time. I spent February in and out of the hospital and got the ileostomy surgery at the end of February. I didn't think I would need the surgery because I wasn't having to use the bathroom all the time - but daily blood tests showed severe levels of inflammation. I didn't have time to plan the surgery - the doctors decided from one day to the next that I needed it.

It's been about 5 months since I've had the surgery. I bike every chance I get - practically every day - because it feels good. Also, I just got back from a successful 2-week trip through multiple cities in Europe. I ate what I wanted, wore a 2-piece swim suit that covered the pouch, walked/biked all day every day (but also took boat trips and train rides), socialized like I normally would

Here's what I worry about:

- Will I be able to have children? Most likely yes, but I also understand that there is always a risk with abdominal surgery. I hear that it becomes more difficult after getting the j-pouch surgery. I haven't gotten the j-pouch.
-Will I develop another autoimmune disease?
-Will I develop colon cancer in the future?
-At my next job, will there be enough bathrooms so that I can use the bathroom anonymously and not have to share with my work colleagues that I have a stoma? (I use the bathroom every 4-8 hours)
-If I wake up in the morning with an unusual pain in my arm, I wonder if maybe it's the beginning of arthritis from all the prednisone I had to take between February and May. I'm usually pain-free though.
-Making bathrooms smell bad or taking longer than my friends who don't know about the stoma when we're at a public place and walk to a public bathroom together
-Am I absorbing nutrients properly?
-I've been losing hair for the last couple of months (some days I lose more than others) - hopefully because of ending the prednisone - but still waiting to feel like the hair loss has stopped - hoping it stops soon since I don't want any bald spots. You can't tell by looking at me but my hair stylist noticed when she held my hair that it felt lighter than before.
-Some days I have itchy skin or I notice my skin gets dry and I worry that maybe I didn't drink enough water the day before, so I try to drink more. I didn't have this problem at all in my life before I stopped the prednisone
-Does my extended family (who knows about my surgery but hasn't seen me in a while) view me as weak and diseased? Should I be more active on social media to show my family that I am more than my surgery and that I can do all the things that I used to do before I got sick?
-Is future stress going to hurt me? How much weight should I give to stress reduction when thinking about the next step in my career?

Thanks. This helped me realize that I spend more time thinking about this than I thought I did. I suppose you can drown yourself in all the what if's or not.

IamCurious said...

Poppie said...
I worry about getting a blood clot in my leg, or someplace. My grandmother had UC and died in hospital due to a blood clot in her leg, so yeah I worry about blood clots.

Are you referring to DVT? There is much concern in this forum about IBDers being susceptible to DVT, Deep Vein Thrombosis. I dunno but you may find this interesting. One of the supplements recommended here is nattokinese which cannot be taken with blood thinners (I think). You need to speak with your doctor before adding supplements.

www.lifeextension.com/Magazine/2017/1/Natural-Prevention-Of-Deep-Vein-Thrombosis/Page-01
Compared to preflight levels, the edema score in placebo subjects was increased by 58.3%. The edema score in the French maritime pine bark extract-supplemented volunteers increased only 17.9%. This dramatic decrease in edema score represented a significantly reduced thrombotic risk. Similarly, the ankle swelling rate was increased during the flight by a mean of 91% in controls, while the French maritime pine bark extract recipients showed only a 36% increased ankle swelling rate, a much safer rate.

Thanks very much....I'm definitely going to purchase this. I will of course check with my Doc re taking these supplements. I feel much better already knowing that there is something I can take to prevent DVT as it is a serious risk for me.