Am I being stupid?

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Arutasi
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/3/2009 11:35 PM (GMT -6)   
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...confused



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)


Red_34
Forum Moderator


Date Joined Apr 2004
Total Posts : 23551
   Posted 8/4/2009 5:58 AM (GMT -6)   
Hi, welcome to Healingwell :) First of all, what medications are you on and do you know where in your colon your Uc is?

I am in remission and I am not considered "normal". I still have D everyday at least 3-4 times a day and I even had a colonoscopy recently. I don't have any inflammation at all. So the doc chalks it up to me having IBS in addition to Uc. But some people when they reach remission have absolutely no symptoms.
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thatfield
Veteran Member


Date Joined Jul 2008
Total Posts : 823
   Posted 8/4/2009 7:54 AM (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.
Dx 2006 right after the birth of my daughter
Lialda 3 pills a day!
Canasa daily
Probiotics Daily
 


Dr-A
Veteran Member


Date Joined Jul 2006
Total Posts : 2105
   Posted 8/4/2009 10:15 AM (GMT -6)   
Don't get frustrated because it seems you are on the right track. With UC you just can't let a bad day or two get you down in the week. I try and look at it more on a month to month basis. I haven't had a complete normal month in probably 10 years. I have great weeks, good weeks, and blah weeks but that's just the way this thing goes. I have been doing great for several months now, but had several issues of blood the past 3 weeks (Talking slight red on TP). Its ok though, I allow myself to do that and try and not get discouraged with it. I am going to bleed until I am cured, so I just accept it.

The meds won't make you completely normal because most are tackling the symptoms. You just really want to see some type of improvement and no worsening.

If your urgency is decreasing that is GREAT! That's one of the main things to get under control. Rectal meds can help with the inflammation in the left side and sigmoid portion of the colon that could be contributing to that too (Hydrocort enemas do the best for me, Vit E enemas help too, Rowasa not so much). Lomitil won't help with the inflammation but can help slow the intestines down overall. It's a good safety blanket to have for trips, plane rides, vacations, and special events.

Our medical system is truely messed up when it tells us what we put into our body as fuel has no effect on its function. We are an obese nation though so I guess most listen well.

With eating though, thats mostly trial and error on learning what increases your symptoms. Takes long time, and I'm still learning.
Proctitis DX 1999, Pancolitis DX 2008
Golimumab study (100mg every 4 weeks)
L-Glutamine 5000 mg + 600 mg pyridoxal alpha-ketoglutarate
Probiotis/VitD3 5000IU+Ca/1000mg DHA


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/4/2009 11:34 AM (GMT -6)   
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!
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


thatfield
Veteran Member


Date Joined Jul 2008
Total Posts : 823
   Posted 8/4/2009 11:53 AM (GMT -6)   
I agree with Fruitgirl, what works for us seems pretty individualistic. I certainly do not advocate for eating unhealthy foods or being obese and neither does my doctor. However, I also personally have no problems eating carbs or milk products so I refuse to cut out healthy well balanced foods from my diet. No one (UC or not) should eat junk food, tons of artificial ingredients, or excessive fats. I eat pretty organic but again - that is a personal choice that I would make with or without UC. I think you are on the right track Arutasi. You and only you know what your body can tolerate. You are not being stupid at all!
Dx 2006 right after the birth of my daughter
Lialda 3 pills a day!
Canasa daily
Probiotics Daily
 


Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 8/4/2009 9:30 PM (GMT -6)   
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!
22, female, diagnosed 3/6/2009, symptoms for 2 years beforehand
Mild ulcerative colitis from rectum to mid transverse colon
Currently taking Asacol (1200 mg 3x/day), Rowasa and Calcium/D supplements


Arutasi
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/4/2009 9:42 PM (GMT -6)   
Thank you all for your welcomes! I really appreciate you guys giving me tips and assurances, I've never actually spoken with anyone else that has UC, which is part of the reason why I'm so iffy about how I'm handling it. I've lurked boards and read up on it but its different from actually sitting down and talking to others. Don't ask me why I didn't try to reach out sooner because I can't adequately answer that, I've always just kept it to myself. Honestly I get kind of scared of what I'm doing sad I always worry that I am setting myself up for something horrible by not visiting my doctor to get my methods approved.

Since you guys asked:

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, every time I mention trying a new one I'm told that I can only switch to Steroids. I suppose I should look into it anyways just to know?

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.

I have spoken to my doctor about how certain foods cause flares, but his answer was the same: That I can eat anything I wanted and that it wouldn't affect me... This and lots of other little things are what made me make the decision to take over how this is being handled.

I'll edit all this into my first post.

Post Edited (Arutasi) : 8/4/2009 10:07:15 PM (GMT-6)


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/5/2009 9:07 AM (GMT -6)   
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.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


Malkavian
Veteran Member


Date Joined Mar 2009
Total Posts : 1439
   Posted 8/5/2009 1:45 PM (GMT -6)   
Fruitgirl-since 5ASA is an abbreviating of 5-amino salicyclic acid, I'd assume so.

Also, Atrusi-having inflammation in two spots is more consistant with Crohn's than UC-most, if not all, UC cases involve continuous inflammation starting at the rectum. Patched inflammation is usually seen in Crohn's.
22, female, diagnosed 3/6/2009, symptoms for 2 years beforehand
Mild ulcerative colitis from rectum to mid transverse colon
Currently taking Asacol (1200 mg 3x/day), Rowasa and Calcium/D supplements


fruitgirl
Veteran Member


Date Joined Feb 2009
Total Posts : 7150
   Posted 8/5/2009 1:51 PM (GMT -6)   
Yeah, that's what I assumed Malkavian...I just wasn't aware of any called that as a trade name.
Status: Remission since late May 2009!
Symptoms began in November 2008, ~4 weeks after giving birth to my son.
Diagnosed with pancolitis on 1/30/09
Currently taking Apriso (4 pills ONCE!! daily), Rowasa twice weekly, Natural Factors Ultimate probiotic 12/12 Formula, and Zoloft (25 mg).


sirenshooter
Veteran Member


Date Joined Jun 2009
Total Posts : 2011
   Posted 8/5/2009 7:39 PM (GMT -6)   

I feel you in not knowing what was wrong. I first got symptoms in early December '04 and my condition rapidly deteriorated and I was diagnosed that coming spring. If I had been made to wait two years who knows what would've happened. I'd lost like 20-25 pounds in a week and a half, bleeding heavily, and they almost made me wait three months for a colonoscopy, but then a doctor with some sense moved me up the list to that week with a speedy prep. (I also got the flu before diagnosis and somehow managed to keep going to school)

ANYWHO (didn't mean to ramble)...

If you're on a 5ASA then there *are* options other than steroids.
I think food is important in general, when I was in complete remission I could eat whatever the hell I wanted but now I have to watch it a bit.
Also a rectal med might be good since you mentioned that area being bad.
And as always, I have to at least mention natural supplements, I'm on turmeric and it did help. It wouldn't hurt to try. Good luck!


19yr old female diagnosed with UC (pancolitis) in 2005 at age 15
125mg Azathioprine 1xday / 1 Mesalamine enema every night /
2000mg Fish Oil 1xday / 500mg Turmeric 3xday /
450mg Boswellia 1xday / 400IU Vitamin E 1xday
Arthritis in both knees
Also: asthma, acid reflux, and Reynaud's Syndrome

Post Edited (ElephantPipe) : 8/5/2009 7:44:09 PM (GMT-6)

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