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Ulcerative Colitis
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Posted 6/24/2012 9:33 PM (GMT 0)
My first colonoscopy was done last Thursday (14th) because I had abdominal pain and rectal bleeding. The specialist said I have ulcerative proctitis and gave me Salofalk 1000mg to take once nightly. He didn't talk to me after the colonoscopy nor to my dad who came with me.

For the first three days after the scope, stools were fine, softer than before but now I think it could have been because my diet was very light. So I figured since my condition is confined to the rectum, I should be able to eat anything I want - this was also confirmed by my family doctor. But was I ever wrong... I had sushi on Wednesday and I had the worst abdominal pain I have ever felt. I was on the toilet and each stool felt like a razor blade! I had to hold onto my towel rack just to keep myself on the toilet. As soon as I felt I was done, I was shaking uncontrollably. I was extremely nervous and had terrible pain which lead me to the ER (third time in the past few weeks). The ER doctor tells me to take Tylenol 3 to ease the pain but I've been taking Tylenol extra-strength and am responding well to that. Today I went to see a walk-in doctor and he told me to stop the Salofalk and keep on the pain killers until I can see the specialist again.

Before my problem was only blood in stool, tenesmus, and abdominal pain that really had no pattern. Now the blood has doubled, there is still tenesmus, lower abdominal cramping alongside the abdominal pain I was feeling before. I don't eat anything but bread and other light foods now because I am scared of being on the toilet. What once was a normal thing is now something I dread like nothing else in my life.

Can anyone please give me some information as to what to do? I am going to the specialist office tomorrow to make an appointment but I hope he is there just so I can have a chat with him. I've only been diagnosed for a few days but like I stated before, my condition has become worse with medication. It's like I'm already at a loss of what to do which is especially disheartening considering the time frame in which all of this has happened.

I know it's a long post but it's so hard to communicate verbally to my family or friends. I get very emotional and end up saying things I don't even mean to say. I find it easier to type it up and have people that have experience with this problem to help me.

Thanks.
Posted 6/24/2012 9:40 PM (GMT 0)
This stuff is individual so nothing that I will say to you will guarantee anything. If the bleeding is uncontrollable ask to get I.V. predinsone. That should stop your bleeding in it's track. Then you can re-assess the situation.

Btw, cut the bread. If you believe diet has a part in this, you know that bread has gluten which is "bad" for your intestines.
Posted 6/24/2012 9:46 PM (GMT 0)
You need to talk to your specialist ASAP. Insist on an appointment within the next week and ask for the dr to prescribe something else to you while you wait. It is possible that you are sensitive to mesalamine or that the UP is worsening and Salofalk is not enough to control your symptoms. I'd ask for a steroid enema or Canasa suppositories.

You're probably right to avoid the Tylenol 3- it can be constipating which is not what you need right now.
Posted 6/24/2012 10:19 PM (GMT 0)
My first dianosis in spring of '08 was ulcerative proctitis, and the GI prescribed Rowasa enemas and told me I'd be as good as new. Fast forward 6 months and I was in the hospital for a week with severe pancolitis. Needless to say, the first line of treatment never worked. Everyone responds differently to these meds. You are not at the end of your rope; there are many other things you can try. Try to get to a metropolitan area and find a good GI with a lot of experience in treating IBD.
Posted 6/25/2012 3:15 AM (GMT 0)
I'm in Brampton right now and the only option I have is a place called Scope Clinic which works through the local hospital. There are other GI specialists around but none that work in groups like Scope Clinic nor have connections like Scope Clinic. That's why I was able to get a colonoscopy scheduled so quickly, because I was referred by an ER doctor. The only city I can try to see specialists in is Toronto. I don't even know if the hospitals there have specific groups for IBD.

As for treatments, I will have to see someone tomorrow and I'm hoping it's the specialist that did my colonoscopy. I'm open to anything and at the same time I don't think my selection of drugs is that big if the doctor is 100% sure the only thing wrong with my colon is ulcerative proctitis.
Posted 6/25/2012 11:53 AM (GMT 0)
dontscopeme,

I am so sorry you are going through all of this.

You may well have a mesalamine intolerance.

What about going on bowel rest for a few days?

Bread is not a good choice of foods, it provides little nutrition, and could be causing major problems if you are one of us who reacts to gluten and wheat.

I would suggest liquid diet, made up of chicken broths and plenty of water, for a bit - to give your gut a rest.

And of course, get in to see your doc to see what's going on.

Hope you feel better soon.

 

Posted 6/25/2012 12:34 PM (GMT 0)
Your food triggers might be similar to mine. You may have a problem with bread and sushi. My major problem is bread and shellfish, along with other select foods.

Gluten from wheat and dairy are very common triggers for flares. I agree with the above advice about avoiding bread for 2-3 weeks to determine if you have a problem with it. And stick with foods that you know are positively safe to eat. Apple sauce, well cooked eggs, and chicken broths are common safe foods. But everyone is different, you need to determine what works for you.
Posted 6/25/2012 12:50 PM (GMT 0)
     I suffered with UP for twelve years before surgery.  For starters, keep to a low residue diet, very important.  Depending on the severity of your condition, your GI doctor may recommend a short course of prednisone to get it under control.  I say short course, because prednisone plays havoc with your system but does work to stop the bleeding and urgency.  Also, ask about rectal meds.   When first diagnosed, my GI doctor prescribed Rowasa along with my other meds and it seemed to work very well.    You may try VSL#3 probiotic.  I have a friend who suffers with UP and was able to attain remission on Rowasa enemas and the VSL#3.   This is a great forum and many people can give you good advice.  Try not to stress (yeah right..lol) because stress can aggravate your condition.

     The best of luck to you!!!

Posted 6/25/2012 4:07 PM (GMT 0)
Thanks for the advice, everyone. I went to the clinic today and my appointment is on July 10th. It's so easy for the secretary to just look at me as someone that wants to see a doctor but she doesn't understand my problem nor grasp the fact that I am in need of a doctor. The specialist was at the local hospital today doing scopes. I had biopsies done and the results of those doesn''t come back until about 2 weeks so it should be this week they see the results.

I've exhausted this city of walk-in clinics and ER visits. It's so aggravating having only one doctor that can definitely diagnose me with UP because no matter how good other doctors may be, you can't really eyeball UP. I guess I'll just have to wait it out though.

It should be noted, I didn't take the Salofalk suppository last night and there was no bleeding this morning. I went three times and there was no blood nor pain with passing.
Posted 6/25/2012 11:49 PM (GMT 0)
I don’t know how old you are but the comment that your dad came to the scope with you suggests that you may be a younger teenager/twenties.
Although doctors just diagnose UC or Cohn’s you will see lots of sub-groups in the UC camp.
The UC forum seems to divide into different onset groups - young - which may start as proctitis but quickly progress to pancolitis. Older onset proctitis which may stay limited to the rectum or progress upwards very slowly. Or the ‘Just stopped smoking’ group – who may achieve solid remission by resuming smoking or using nicotine patch/e-cigs.
Whichever group you recognise - remember that many people get remission from mesalamine drugs and people who get their UC into solid remission often do not re-visit this forum.
The scope will have upset your gut so it may take a while to settle but one way many people are able to limit symptoms is diet control.
This could be the classic low residue diet, but my daughter (17 years old at pancolitis diagnosis) reacted badly to refined carbohydrates like bread/pasta/rice. Her best control came from cutting back to a very limited range of foods – bananas, well cooked chicken or fish, carrots, skinned peppers and maybe spinach/broccoli. After that by keeping a strict food diary we could see which foods caused problems and so we could expand foods and generally found she tolerated anything in the SCD protocol. This has been a good guide but I must stress the use of probiotics such as VSL3 introduced slowly and good quality vitamin supplements. People cannot heal without the basic building blocks - so I believe vitamins/minerals/proteins are vital to the healing process.
Diagnosis can be the most difficult time and the important thing is to get settled into remission as soon as possible - if you need steroids to settle inflammation please do not be put off by negative reports. They are damaging long term but if your GI wants to kick you into rapid healing they can be the best option. Progression of UC is very difficult to predict and as a younger person it can seem bleak - but you will get lots of fantastic advice on this forum and whatever questions you have – no matter how strange – someone will help you.
Mesalamine is the main line medication but it doesn’t suit everyone (my daughter got pancreatitis) but even without that drug - on the plus side she has settled her symptoms, travelled to Japan and Spain, and is off to university in the autumn.
UC is a chronic condition so don’t expect things to fix overnight - listen to your body and write down all symptoms – this will help you work out your path.
Wishing you well.
Sue
Posted 6/26/2012 3:38 AM (GMT 0)
Thank you, Sue. I am 19 years old but have been battling problems like chronic abdominal pain and changing bowel habits for over a year now. It was when I mentioned rectal bleeding that the ER doctor referred me to the GI specialist. I'm stopping the bread now and a few other things to see if it helps.
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