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Ulcerative Colitis
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Posted 10/4/2008 6:11 AM (GMT 0)
G'day guys... I've been lurking for a few months now... I was diagnosed with UC in May this year by a kind doc who, on my waking after a colonoscopy, scribbled down the words "ulcerative colitis" on a scrap of paper out of his pocket, said, "Google it" and walked off. I have done much googling since, and my initial relief that I didn't have something worse (I was thinking bowel cancer, fersure) ... has turned into something like disbelief that I'm to be involved in all this. I was prescribed colifoam, which had everything perfect for a while - so perfect, that I stopped using it - and now it's back. Doc said once it was under control to taper colifoam & start using sulfasa-whatever it's called 2x twice a day (yeah, I stuffed up with his advice). Haven't been brave enough to even break the seal. I don't like taking panadol. Never had D problems, just lots of blood & strange bms. I don't like to mention a headache when I have one, so I'm no good at talking about all this ridiculously intimate stuff - I barely even mention it with my hubby. I don't know what I want from y'all here, except I guess it's an anonymous-type forum where I can talk with people who'll understand. I have 2 small children and need more energy etc to deal with everything. Does being grumpy about it help, dya think?! Thanks for listening.
Posted 10/4/2008 12:57 PM (GMT 0)
      Everyone here is different.  We have varying degrees of the disease.  What works for some, does not work for others.  Best thing to do is 1) find a good GI doctor whom you trust with all your heart  2) ask questions and don't be embarrassed, this is your health  3) if you had a colonoscopy demand to see the results ..pics and all and have him explain them to you  4) find out the best form of treatment to suit your needs and follow it.

     You will find that diet is individualized.  Personally, while I am flaring, I cannot tolerate high fiber foods.  I keep with a low residue diet and gradually increase the fiber.  I can, however, tolerate the GROUND meal flaxseed (1T) in my rice krispies in the morning and I drink SILK (soy derivative) instead of milk.

     Good luck

Posted 10/4/2008 1:26 PM (GMT 0)
Hi Booknut,

I think just about everyone goes through some period of denial and embarrassment from this disease. I refused to take my pills and various bum meds and only explained my illness in the vaguest of terms to my loved ones and no one else.

Don't make my mistake. Try to take your pills and eat healthy food and get lots of rest. With luck you will soon find the energy to keep up with the kiddos.

You will have this disease for the rest of your life (unless you give your colon the ol' heave ho first), but chances are you won't always feel sick.

I have learned tons from this site and hope you will too. One thing I learned here is to take probiotic supplement. Absolutely worth it!
Posted 10/4/2008 1:29 PM (GMT 0)
Welcome to HealingWell. I'm sorry you have this d___ disease, but glad you found us. You'll find a lot of support and ideas here; it's up to each of us to sort through people's ideas and decide which may help us and which are rubbish in our case. Remember that what works for one may not work for another, so we do try to respect all suggestions.

One important thing that you've started to learn is that for this chronic condition, we need chronic medication. Sulfasalazine is a very safe drug; read up on it so you can be alert for any side effects (as you should for any medication you take), then take it every day. It's easy once you start feeling better to convince youself you're well and stop the medication, but that can end up making you sicker than you ever needed to be.

Of course we all believe we'll be that lucky person for whom this disease just goes away. There's a grieving process we have to go through as we adjust to a new reality. A good place to start is by reading the Resources thread at the top of the page, and the links that are in that thread. You may also want to review the forum rules again (link is on the right above) to familiarize yourself with them.

Glad to have you here, and hope you're soon feeling better. It is possible to live a normal life with UC, it just sometimes takes some experimenting to find your combination to get there.
Posted 10/4/2008 3:28 PM (GMT 0)
Hi Chickee, I know how you feel. My doctor was really cold about it too. They had a wrong diagnosis of me for 14 months, so when he check things out with my sigmoidscope I heard him kind of say "Oh my Gosh" and I freaked out!! I had severe ulceration by that time. He then gave me a pamphlet on colostomy bags and a web site to "learn".

I think you are on the right track. I am glad you are posting here because you do need to talk about it. Even talking about it can make it see "ok", like I am still me, this disease is not me.
Posted 10/5/2008 1:31 AM (GMT 0)

Hey Booknut,

I'm still adjusting to this stupid disease, too. 

After my colonoscopy last year, I was coming back around from that IV med the makes-you-forget-everything when my GI came and told me I had a "very mild case of ulcerative colitis" and gave me a prescription for more daily meds than I'd ever taken in my life.  My husband was there, but he isn't too great at questioning or advocating.  So, I didn't take my UC very seriously, quit the meds after about a month, and went into a pretty good flare early this year.  I still don't feel my UC is totally controlled. 

You'll probably do a lot of experimenting with diet and I really think it's good to get regular exercise, especially something like yoga because that helps stress levels, too.        

But speaking of grumpy, the next time I met with my GI, the first thing I said to him was "It's nice to meet you when I'm conscious."  I'm not sure how he took that.

Hang in there.     

Posted 10/5/2008 2:38 AM (GMT 0)
Thanks, guys, it's good to know you're out there! (Though this is reminding me strangely of Fight Club - the book or the movie...) I'm 40 now... and the weird thing is that (and herein probably lies the cause of the problem) since kids (the last four years) I've never lived a healthier lifestyle. Prior to being pregnant with first, I was smoking, drinking & doing all the wrong things. And I've noticed it stated on a few sites that people who present with UC have often given up smoking in the past five years or so... How abysmal is that? You think you're doing the right thing... (No, I haven't taken smoking up again...) No lack of exercise with two small ones, healthy meals, early to bed, early to rise... I guess exhaustion doesn't help, or stress, but otherwise...
I'm a bit confused with doc's current advice - his original advice seemed to be taper the colifoam, then start taking the sulfasa... once off the colifoam. Now, it sounds like (and I have to interpret with this guy, so I am thinking of looking around for another perhaps more human GI) I should continue with colifoam as well as sulfasa... Does that sound right to anyone? Do I really need to ring him back & ask him to spell it out?
Is diet really making a huge difference? Asking my doc, he just shook his head and said, "Diet doesn't change anything." You guys seem to focus on it, however. It makes sense, tho, given it's the digestive system...
Thanks for listening.
Posted 10/5/2008 4:51 AM (GMT 0)
I'd suggest starting the Sulfasalazine and continuing the colifoam. Once your symptoms have subsided, taper off the colifoam. Go from daily to every other day for a couple of weeks, then to every three or four days for a couple more weeks before stopping. If you start to have symptoms again, go back up on the colifoam and call the doc.

Diet affects some of us, not others. Quite a few of us are lactose or gluten intolerant. Others have specific foods that they feel help or hurt them. For others of us, diet really doesn't seem to have much effect. A good idea is to keep a food diary - what you ate and note any symptoms. Over the course of a few months, this may help you see if any foods bother you.
Posted 10/5/2008 4:58 AM (GMT 0)
Thanks, Judy. Doc said to take one tab to check for allergic reactions, so I'll start tomorrow morning. I reeeally appreciate your thoughtfulness & advice. What did people do without the internet???!! Cheers!
Posted 10/5/2008 5:18 AM (GMT 0)
I suffered in silence before the internet and before they had IBD support forums (it was one of the first things I looked for but could not find when we first got on the net)...you know what they say, "misery loves company" LOL

It is a good idea to start a food diary to see if you're an IBDer that is affected noticably by diet...if nothing eles it can save you some time of suffering by avoiding foods/beverages that you find do seem to exacerbate symptoms...

Researchers have noted that processed foods/beverages, fast-foods, animal fats, caffeine and refine sugar can all exacerbate IBD symptoms as well as sugar substitutes/artificial sweetners.

:)
Posted 10/5/2008 5:20 AM (GMT 0)
This site is really great because it allows for us to share ideas and experiences we cannot get from the Dr.'s office. Also alot of advice and friendly banter helps us realize that we are not alone, that there are others who have this for the rest of their lives too.

This info gathered here is usually not given by a GI due to lack of time constraints, lack of knowledge of other aspects (nutrition, alternative therapies, etc.) or the GI just doesn't have the experience with living with it. Its the difference between being booksmart and street smart. Most of the people here are both because they are guided by the desire to live the best life they can.

The best advice that I feel that can be given in such short order is: Educate yourself about this condition as much as you can.
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