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Ulcerative Colitis
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Posted 7/5/2013 7:32 PM (GMT 0)
Hi, I'm cass, I'm 23 yo and live in Perth, wa. Australia. (I don't know how big this site is) lol yesterday my dr diagnosed me with ulcerative colitis...he's referred me to a specialist as he couldn't answer many if my questions so I googled it and wound up here tonight out of curiosity. Basically I'm looking for some answers and some guidance as to what to expect and what the treatments that I'm assuming most of you are already taking, what they're like and their side effects ect. Any help or advice is appreciated,
Here's my story...
I recently travelled Europe, America, Canada and Ireland. While I was 1 month into my 5 month holiday of excessive drinking and eating all the wrong foods I went to the toilet in Rome and noticed blood ...lots! Naturally I was scared, but I put it off as a tear in my bum and ignored it. After the bleeding continued with every bowel movement I sought advice and started using a heammorhoid cream...I had no pain and no other symptoms of anything...so after 5 months of bleeding bowel movements which I became used to I came back home to perth and saw my dr. I did a barium enema and then a colonoscopy and banding of hemmoroids...they also took a biopsy. Then I was diagnosed with UC.
I have to wait 1 month before seeing the specialist and am full of questions google just doesn't answer...
I'm back to my normal habits now after being home for 6 months and I exercise regularly and eat healthily. I am a fitness instructor and personal trainer by trade. ...I never thought I would get a chronic illness!!! I freaked out a little at first, then realised its not that bad...I'm sure I can still train hard and do all the normal things I do...it shouldn't stop me ...right?? I've had the only symptom I have got for almost a year now everyday I bleed when I open my bowels....but I'm still doing everything I want to ...so now that I have a diagnosis...why should I Change what I'm doing?? Also because I've been having this symptom for so long I've forgotten what a normal bowel movement feels like ...as it turns out the urgency I feel to poo isn't normal lol. ...so two symptoms then! Anyway I have a bf and were constantly at each other and since my colonoscopy it hurts when he touches me and when we try to have sex it puts pressure on my rear end, I'm guessing just coz everything's so close ...is this just from having the surgery or is this because of the uc and when can we have sex again? Also I try not to take medications unless its absolutely necessary I have a high pain tolerance as I was a sick child...lots of allergies...that's why I love fitness so much. So the medications we have to take everyday are they tablets ?? I find it very hard to swallow even the mini pill it's a mental thing I know but I have to chew panadol sometimes by throat just won't open lol also what are the side effects if the most common treatments and I was told that sitting in hard surfaces can make things worse? Is that true? Also should I be avoiding certain foods or eating more of something? I want to have kids when I'm older does UC affect that or make it harder to have kids? Any help pr advice or your own experience is greatly appreciated as I have no idea what this disease entails for me in the future. Thanks, cass.
Posted 7/5/2013 7:51 PM (GMT 0)
I think you should know that bleeding from your colon will ultimately result in you becoming anemic. Untreated inflammation in the rectum and sigmoid colon (and the rest of it) increases your risk of cancer. Untreated UC may ultimately spread and include the whole colon, increasing your risk of toxic megacolon, which will lead to colostomy and maybe even risk your life.

So yeah, you should treat this.

The most successful approach is to treat with rectal meds and oral meds, simultaneously. The safest and most common med selected first is 5-ASA, which comes in both rectal and oral forms. If you are able to tolerate this medicine it should be something you take for life. It will not have bad side effects and will not raise your risk of anything.

As a person with UC, you should avoid NSAIDs at all costs (advil, ibuprofen, naproxen, etc. etc.). You should probably be taking a vitamin D supplement. You should try and get probiotics into your diet (live culture yogurt, OTC probiotics, prescription VSL#3). You should probably avoid a lot of alcohol. Dietary changes are probably going to help you, but they're very individual. Start with eliminating lactose and see if that helps; many adults are lactose intolerant and many people with UC are lactose intolerant. Many people with IBD (UC and Crohn's) also develop gluten intolerance, so you might want to consider that possibility.

Welcome to the forum.
Posted 7/5/2013 8:16 PM (GMT 0)
cass,

Welcome to the forum.

Sorry for your recent diagnosis.

UC sucks, but in many cases can be managed through medication, supplements, and lifetstyle.

Kaz gave you some sound advice.

I didn't do well with the standard UC meds ( prednisone and mesalamines), and when the doc gave me a choice of surgery or biologics, I balked and found my own way. 

I would suggest:

1) get your vitamin d3 levels checked - there's a big correlation between low levels and UC

2) diet is a big factor for most of us, i would suggest you try gluten and dairy free

3) probiotics are key

4) slippery elm powder and l-glutamine can be very helpful

If any of this interests you, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Posted 7/6/2013 2:06 AM (GMT 0)
hi cass,

there are a few things you can start with. I'd say, make a food journal and see what kind of food/drink affect you.

This illness is so individualized that you can't really say, what food will trigger for this person or not.

There are diets like Paleo/SCD for people with IBD can try out. It can be hard at first because it restricts a lot of things that we used to eat before.

Some avoid gluten/dairy products and do very well. Avoid nuts if you think they are irritating you gut.

I avoided treatments and tried to go with the natural route but I sort of regret doing it because I thought I was doing my body a favor. It did help somewhat but realized that sometimes medical intervention is necessary to prevent further damage to your large intestine and like Kazbern said, stopping the bleeding is the most important thing right now.

You can always wean off the drugs slowly and gradually if you get better later.

And about the relationship part, it can be hard sometimes. Be open minded and let your boyfriend know what you're going through. I'm sure he'll be understanding.
Posted 7/6/2013 2:11 AM (GMT 0)
Hi Cass: I am very very sorry for to here this. I wish you the best of luck.

Old Mike
Posted 7/6/2013 3:19 AM (GMT 0)
I'm sorry Cass that you are going through this, but I'm glad you found this site. I have learned more from this site than any other that I have researched. There are some very wise people on this forum and a combined knowledge base that rivals a lot of the doctors that I know. I've seen things discussed on this forum that my doctor had no clue about.

I will echo kazbern's statement as well that your first stage medications are usually mesalamine enemas along with oral mesalamine pills (depending on how extensive your UC is in your colon).

You should still be able to remain active, especially as you manage your flare. I am still very active, but sometimes might need more rest when I am in an active flare.
Posted 7/6/2013 6:12 AM (GMT 0)
Thanks so much guys...I still have to wait a month to see the specialist to see what meds he wants to put me on etc...but your advice has helped...some of the amounts of meds you guys are taking is scary...I've always steered away from supplements and vitamins coz I try to be naturally heathy. For example I eat porridge every morning and broccoli in my lunch every day coz I've heared these are good at fighting bowel cancer. The drs mustn't be that worried about me becoming anaemic because I've been bleeding from day one and that was 10 months ago now and no one seems to rush anything...our health care system sucks! I had to wait 1 month to get a consultation, which was rebooked coz the dr was busy, then I had to wait another month for the enema, then it came back negative so I waited 2 months for a colonoscopy then now I have to wait another month before I can learn about UC and get meds for it. Thanks so much for your advice I guess I'll look into going gluten free and see if that helps me...I love ice cream so I don't want to go dairy free lol. Im glad I can still exercise hard and I'm guessing the specialist will be able to tell me when I can have sex again. thanks so much for your help guys. :)
Posted 7/6/2013 10:53 AM (GMT 0)
The 'good news' is that we do have a chronic illness, so it will still be there at the end of the month :). I am slowly getting more patient with it.
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