Am I being stupid?

Hi, I'd like to know if I've doomed myself. A big thank you if you read through this, an even bigger thank you if you reply =(

I've been diagnosed with UC for almost four years now. I've had it for at least six though, it took THAT long for my doctors to realise what was wrong. I was a kid, people thought I wasn't eating my vegetables (ugh). It started small, we went to the doctor, he told us the same thing over and over. It wasn't until it got to the point where I was regularly bleeding and had horrible stomach pains that they finally sent me off for tests and realised that I had UC.

The medication for the most part suppressed my pains. I no longer feel like I have some rabid animal trying to claw its way out of my gut. I realised that stress had a big role to play too, if I was under alot of pressure it would almost degrade back to the state it was before my meds.

I've stopped eating most junk foods and fast foods, I'm trying to cut off from coffee too since I think that that's giving me issues (but oh how I love it *sad* ). I'm careful not to drink to much milk. I avoid eating +too+ much fibre because alot can make it worse (weird eh? I'm completely on the other end away from constipation). I eat red meats for iron and such. Coke and pepsi are like torture in a can, I run from those.

My doctor.... When I asked him about watching what I eat he told me eat whatever I like, that my diet doesn't do anything. When I told him my medication wasn't completely curing me he just upped my meds to the point where I was having crippling pains in my sides. Admittedly this one was my fault, I complained to much but still... They didn't know it was the meds that caused this new pain. I ended up having my kidneys scanned along with anything else that might have been the cause. They found nothing wrong. I found out on my own that I was over dosing. If I felt it starting up, I'd drink like a gallon of water and it would go away.

I re-adjusted my medication. I adjusted my diet. I worked on keeping the stress levels down, and now I've started exercising. I try my best to eat healthy meals and get enough of the nutrients I need. My weight stopped teetering on the edge of a dangerous drop, I've actually managed to gain some weight. I don't look sickly pale anymore.

.. .But I almost never seem to go back to normal. When I DO seem ok, 'normal', it then quickly slips back into the old habits. I'm usually dealing with a mild case of diarrhea. Once a week (or two) it can progress to bleeding again. In terms of the pain, I no longer feel anything more than discomfort or an unpleasant ache unless I decide to get stupid and eat the things that I've black listed.

I can control myself better, I don't have to make random dashes to the bathroom so often which is a HUGE plus as far as I'm concerned. It gives me the illusion that I've got some control over it =P



Is what I'm doing bad?
Is my medication not working right?
Should my medication be making me completely normal?
Should I go back to my doctor and ask him to try and fix it for me?

I'm so messed up...



EDIT: Adding these in because I forgot to the first time

The medication I'm taking is 5-Aminosal 500MG
I'm taking 5 tablets a day (6 if I suspect something is up). I haven't researched the different medications to much... Mostly because every time I mention trying a new one I'm told that I can only switch to Steroids.

I do generally know where my UC is located, I'm unfortunate that it's in two places. From what I was told my rectum and the area around it is a mess. I've also got a bit of it happening around farther down in the track, at the other end of the large intestine.

Post Edited (Arutasi) : 8/4/2009 9:45:54 PM (GMT-6)

I think many with UC also have either food allergies or general IBS. In those cases, foods will affect your BM's and also can give you cramping and discomfort. My husband has IBS and he has to be careful with what he eats or he will be running to the bathroom. If you just have UC alone, foods should not make that big of a difference...but again it seems MANY people suffer with both IBS and UC. It sounds as if you could have both. You might mention that to your doctor. I think that what you are currently doing sounds perfectly okay and that you should continue to listen to your body.

Welcome to healing well! I agree with Sherry that it would be helpful to know where your UC is located and what meds you are currently on and if you've been on any others in the past. There are a lot of different options out there, so maybe you just need to try a different one. As to whether or not your meds will make you completely normal, that seems to be pretty individualistic. Right now, I feel that I'm back to my pre-UC normalcy (so I disagree with Dr-A that the meds won't make you completley normal)...I even got a bit constipated on a trip to St. Louis, which I was excited about, as I always used to get like that when traveling in my pre-UC days. But, I've not had UC for very long, so perhaps that will change in the future. My doctor also said (when I was struggling to get into remission) that it's ok, in his perspective, if I don't get back to normal, so long as my symptoms are managed well enough for them to not interfere with me life. And I do think that's ok. I honestly don't care how many times I poop a day so long as it's not extremely urgent like it was when I was flaring!

I think that a lot of how well your symptoms are managed with the meds depends on how well you tolerate them and if you have any other digestive issues (such as IBS) or food sensitivities or allergies in addition to the UC.

Good luck!

Hey, I can relate to you waiting so long before docs figured out what was wrong with you. I had on-and-off pain and blood and d for 2 years before docs figured out what was wrong with me, I had at least two diagnosis of gastroenteritis in that time period and had a triage nurse accuse me of having munchausen's (now THAT was ugly). It sucks.

As for meds, most of them except maybe the stronger ones (pred, rowasa) take time to work.

Cutting out coffee is so hard, I love it but can only drink decaff now. In fact, out of all the stuff I've had to give up because of this, I miss my coffee and diet coke the most. Try keeping a food journal to see what bothers you. I'd say you only need to cut out certain foods if you find they bother you. Also, try fish oil or probiotics, they seem to work for a lot of us!

Is your 5-Aminosal a type of 5ASA drug? I've never heard of that specific thing before.

Definitely look into different meds...there are a LOT of medication options for people with UC. Where do you live? The Crohn's and Colitis Foundation of America website (www.ccfa.org) has a lot of info on the different medication options.

Yeah, that's what I assumed Malkavian...I just wasn't aware of any called that as a trade name.