Hi, introducing myself

Hi, it was nice to find this forum, been feeling sort of alone with my condition.
I'm 26, otherwise healthy, from Canada.
I have not yet been diagnosed with anything, my doctor suspects proc*** and or colitis.
My symptoms first started 11 months ago when I noticed a small amount of bright red blood after a bowl movement, and the stool(normal) had some mucus on it. After a week of this the blood increased and intense throbbing pain began in the rectum. I went to my local doctor who said it's likely not serious and probably a fissure or hemmorhoids and sent me home, over the next week the pain subsided to a dull ache but the blood continued but never got worse, convinced it was a hemmorhoid I ignored it for the next 6 months. At this time I began getting thin yellow mucus discharge without a bm, I returned to the dr who did an examination but couldn't find any fissure or hemm and referred me to a specialist.
I waited 5 months for a 5 minute appointment with the specialist/general surgeon, by this time my symptoms included heavy bloody mucus discharge mixed with pus, 2-3 times a day, along with crampy pain in my lower left side, severe rectal pain radiating to my feet, lower back/tailbone pain. Stools loose, but not diarhea.
The surgeon wrote me in for a colonoscopy, but said the waiting time is up to 6 months. He also prescribed me pentasa, 250mg twice a day for next 6 weeks, oral.
I have been on the pentasa for a week now and some of the mucus and blood has subsided, so has the left sided camping, however the rectal and tailbone pain is somewhat worse.
The pentasa has made me fatigued, dizzy, upper cramps, heartburn, gassy, mild headache, really hoping these side effects diminish.

Sorry for the long post, just really needed to vent. Been feeling really hopeless, especially with facing the 6 month wait to get any Answers.

Yea colonoscopies are hard to come by here(joys of public hc)I think the only way to get it faster is getting admitted to hospital.

Welcome to the forum, thanks for introducing yourself))). Get better please!

What about a probiotic? Also some people do well eliminating gluten and lactose. They have mesalmine enema that go higher than suppositories. Also they make hydrocort enemas.

Hey Canada26...sorry to hear about your recent symptoms. I've had UC for a long time. The last five years without health insurance. It's been horrible to manage this disease without it. Lots of trips to the ER just to get my meds. :(

One thing I do know...things can go from bad to worse in a short amount of time. My UC spreads like wildfire if I don't hit it hard with meds. at the first sign of a flare.

I really hope you find a way to get properly diagnosed. Sooner the better. The right meds. could make all the difference in the world.

Good luck,
TJ

canada,

Welcome to the forum.

I'm so glad you found us, but sorry you have to be a part of this terrible club.

It's good you're going to get some probiotics, and ask about rectal meds too - they can both be very effective.

Tedd is right, plenty of us,including myself, testing negative for gluten and yet found gluten to be problematic.

L-glutamine you say didn't make a difference after 2 weeks?

How did you use it?

L-glutamine powder ( 1 heaping teaspoon in a little water or juice on an empty stomach) can be used to help diarrhea symptoms. BUt l-glutamine powder used long term will help with colonic repair.

You may want to try slippery elm powder too.

If you are interested,  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 as in going gluten and dairy free and being on the Paleo diet, 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.

Hello fellow Canadian,

I also experienced a big delay in getting diagnosed ( I'm in a small city in northern ontario), and its so frustrating waiting for appointments and then not getting time to speak with the doctor etc. but you will get treatment AND you won't get a bill!

The only way to get your colonoscopy earlier is to go to emerg. I kept going to my family doc, incredulous that I couldn't get in sooner. Do go in if you think you're becoming dehydrated. Your family doc can also check your hemoglobin if you can't keep up with your bleeding.

I take both Mutaflor ( which is another plus for Canadians) and VSL#3. If you can afford them go ahead and get them. They're not prescription.

There really isn't a sure way to test for a gluten problem other than to test it out yourself.

Try not to get discouraged with all the waiting and good luck eh

canada,

Too bad you have to wait.

I know the no gluten diet is daunting at first, but once you get used to it, you may see a huge difference. And don't forget that there are hidden sources of gluten everywhere: mustard, ketchup, dressings, etc...

As far as the PRobiotics - you certainly IMO need much stronger ones.

I would recommend you get: s. boulaardi from amazon, and if you can afford it MUtaflor or VSL #3.

 

where in Canada are you? In Ottawa, I was told about 6 month for GI appt but got in much much faster. Also got my first colonoscopy for diagnosis, much faster than date given too. It was 7 years ago so i don't recall how long exactly but i remember it was pretty reasonable. (perhaps a month or two for both to occur).

Think they err on the side of caution but unless you are in remote area, you will hopefully get in much quicker. If not treat like it's UC and hang in there.

Canada26 "I did try going to the emergency once, when my symptoms were at there worst. The doctor on call sent me home because he said my life wasn't in any immediate danger."
--------

I had that happen to me three times while I waited to get into a specialist here in Canada... They kept sending me home saying the same thing. Not life threatening.... 6 months wait, same as you ... That was about 8 years ago for me.

That's the worst part. Inside of that wait time things can go from bad, to well - out of control. By the 4'th journey to the emergency room (about the 5 to 5 1/2 month mark for me) they rushed me in for an emergency Colonoscopy and couldn't even complete it cause the inflation was so bad. They were afraid of perforating the bowel. And the GI had the nerve to say to me after the procedure - as they sometimes request to speak to the patients briefly after - "You are very inflamed, why didn't you come to the hospital earlier"?.... Seriously. It's a crazy situation we have here in Canada.

Canadamom is right - call and ask to be on the cancellation list - and keep calling weekly. I've been told this works. It worked for me for an MRI to deal with another related issue. Took about 2 weeks to get in.

Also - I'm in Southern Ontario, not sure where you are from. But there's a new clinic here with about 5 specialists (i think) in a private building. All they do is colonoscopy's all day long. It's the purpose that it was built for. I'm told the wait time is minimal and the doc's are excellent. It's supposed to be top-notch. It's in Kitchener, ON. Part of a new trial clinic thing. You could try something like that if you're near the area.

Just prior to my fourth trip the the emergency room mentioned above -upon a relatives advise (My aunt is the director of surgery at a local hospital here) - she had me call a hospital in Buffalo (US) to see about paying for one as I felt I couldn't hold out any longer - I thought I was going to die... seriously... The doc's secretary called me back that very night and said I could get in within 24 hours and they would take care of everything as part of a package - hotel stay and all.. Was about $1,800 if memory serves me correct. That's always an option if you can take the financial hit.

It was that very same night that the unimaginable pain, blood, mucus and putrid foamy frothy stuff set in hard and things got way out of control, so I landed in the emergency room here and was rushed into the colonscopy room.

Scary stuff.

A far as the gluten free stuff - I'd google SCD - http://www.breakingtheviciouscycle.info/ and do some reading - I only mention it cause it's all gluten free and pretty easy to follow. PLEASE NOTE: Everyone seems to respond different to diet - works for some others not so much. So it's a LOT of trial and error. But there seems to be a lot of people on here that can answer your questions... I new here... I'd start with the gluten free and move on from there depending on how you feel. I only mention the resource as it's all gluten free.

I have to stop doing this - but this cookbook makes gluten free food/life awesome -
http://www.amazon.ca/Grain-free-Gourmet-Delicious-Recipes-Healthy/dp/1552856682

Someone on here suggested to check your local library first for the book(s), prior to spending any money on anything cookbook/diet related. I thought that was an awesome idea as it all adds up quickly.

VSL#3 helps me greatly as well, as suggested above. It seems expensive but when you compare the cost per qty of bacteria per packet it's actually a far better deal than anything else I think. If you order it right from them you'll get it the next day.

I also make my own yogurt. Which is minimal effort and quite cost effective - it's a daunting task the first few times - really not that hard though.

All the best and I do hope you start to feel better soon.

Mark

Being in the unknown is no fun. When you get your results from the colonoscopy you can set your mind at ease and go on the right treatment for whatever is causing your symptoms. I was diagnosed with colitis at age 26 and understand how much it can suck, at ANY age I'm sure. Though your symptoms are yours and may be awful for you at the moment, know that I (most of us on this forum) have heard much worse, so I can somewhat assure you that I think you will respond well to some treatment. Good luck! Hang in there and keep us posted!

I had a similar experience when i was diagnised at 23 (now 26 too) kinda luckily I got admitted to hospital when one GP suddenly took me seriously so didn't have to wait. but the unknown is scary.

Hang in there. and fight for an appointment.