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newly diagnosed. very confused

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Ulcerative Colitis
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Posted 7/1/2014 11:00 PM (GMT 0)
Hey, so I was just diagnosed with UC in the first 15 cm of the rectosigmoid. Apparently it is mild. The Dr. has told me to take melamine enemas every night and my follow up appointment is in August. Is that when I will be seeing what kind of medication I will take? I am just confused on my diet, how can I help suppress the symptoms? What will the enema be like? What could my future be like? I am only 23 and I am just freaking out.
Posted 7/1/2014 11:31 PM (GMT 0)
It sounds like you've caught it early. You've found a great forum. I arrived here scared last fall and feel much more in control of my situation. My disease isn't under control, but I'm educated, aware of my options, have a better sense of what to look out for and am able to have more meaningful conversations with my doctor.

Are you truly on an enema or is it a suppository? I use Canasa and it is super easy. Sometimes I need a little lubricant, but it usually goes right where it's needed when I get it in the right place. I didn't understand what my situation was when I first went to a gastro 8 years ago, so I ended up doing nothing since it seemed to right itself the further away I got from the delivery of my daughter. The doc was recommending the mesalamines at that point. I wish I'd taken him seriously. Perhaps I would have avoided pancolitis. I'm not an expert, but it's likely your doctor will decide in August if you should add the oral version of what you are taking, Asacol, to the mix. If that ends up being the case, it's an easy drug for most to take. Some seemed to have a sensitivity to it, but it made a difference for me on a macroscopic level. It's not enough to get me well on a cellular level.
Posted 7/1/2014 11:47 PM (GMT 0)
mzeller, I'm 23 as well and was also just diagnosed. The support I've found in this forum is amazing, these people really know their stuff!

It's so scary to be diagnosed with this in your early 20s when your entire life people have told you "you're healthy, you're fine." I was even misdiagnosed with hemorrhoids initially because my PCP was so insistent that I was "otherwise healthy." I'm just now trying to navigate all of this as well, so I totally understand how you are feeling! There are people out there who understand what you are going through and want to help. Take some solace in that and hopefully you will get more of the answers you need in August!
Posted 7/1/2014 11:58 PM (GMT 0)
Thank you both so much! I am pretty sure it is truly an enema...since thats what it said on the discharge form, but I will not be getting it until tomorrow. I am just very scared about all these harsh drugs. Have either of you (or anyone else reading this) found that changing your diet helps in anyway?
Posted 7/2/2014 12:12 AM (GMT 0)
Ah, probably Rowasa. I've been tempted to switch to that. Some like the enemas better than the suppositories. I think it's small compared to what you might be imaging for an enema. I'm sure someone will weigh in.

My diet doesn't change my disease, however, when I'm in trouble...certain foods make it worse. My entire colon is sick. When I'm not doing well, I take a pass on things like nuts, hard vegetables, garlic, seeds, etc. I ate a lot of avocados, baked potatoes and scrambled eggs for a while.

Some have mentioned diet helping, but it's hard to know if they had sensitivities to things like gluten already and the addition of that reaction to what we deal with in terms of UC compounded the problem.

For me, the most important things I do to keep my UC from going nuts is:

1. drink lots of water
2. exercise daily
3. eat smaller meals
4. get a full night's sleep
5. cut down on stress

I also supplement with Vitamin D, calcium, iron, probiotic and B12. Mostly because I'm not eating/absorbing a balanced diet.
Posted 7/2/2014 12:12 AM (GMT 0)
you'll have to consult with the great and powerful Oz regarding your future ;-)

the enemas will be fine - kinda like drinking a vanilla milkshake, only you put it up your butt - you might want to warm it up first :-)

good luck - you'll do fine - all of us dolts here did !
Posted 7/2/2014 12:27 AM (GMT 0)
The enema is not a "harsh medicine." The mesalamine it delivers to your rectum and sigmoid colon acts primarily as a topical medicine with very little systemic absorption. There are great tips here on how to use it most easily - squeeze out the air before inserting, do it at bedtime, lay on your left side.

Welcome to the forum!
Posted 7/2/2014 12:27 AM (GMT 0)
What are your actual symptoms? There is a resources thread at the top of the page which is very helpful.
Posted 7/2/2014 1:14 AM (GMT 0)
my actual symptoms are lots of rectal bleeding, along with feeling like i have to go to the bathroom a lot and cramping in my lower left quadrant. some foods of course make it worse which i tend to stay away from. but other than that it doesn't seem to be as bad as some other peoples..
Posted 7/2/2014 10:50 PM (GMT 0)
@ Sparton4life I to have pan colitis diagnosed on Monday after being diagnosed with left sided colitis back in sept 2011.

you say you have pan colitis does it differ a great deal in your symptoms(Flare) and do you think this developed due to miss treating your UC?

I have just been prescribed pred 40mg and to tapper 5mg a week to 20mg stay at that for two weeks then tapper again until I eventual finish and told to take asacol 4.8 mg a day. How much asacol do you take on a daily basis and does it always stay the same or does the dose vary due to symptoms?

Bez
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