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Topic: living with Crohns or ulcerative colitis
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Jeffer83

7/8/2018 10:17:32 AM
Member since:
Mar 2009
Total posts:55
living with Crohns or ulcerative colitis

Anyone in Brandon or the Westman region living with either of these conditions. My husband is awaiting diagnosis for one of these but having a lot of issues dealing with a flare up while we wait. He’s been in and out of walkins and er but every dr he sees seems to have a different idea how to deal with it. He was hospitalized for almost a week where he saw the dr most well known for dealing with these diseases but wasn’t all that helpful. He is also the dr that we’ve been waiting for months for diagnosis but keeps rescheduling. He currently can’t eat, can only drink a small amount of water, running to the bathroom multiple times a day and dry heaving. Took him to ER yesterday but they sent him home and basically said it’s the nature of the beast. I don’t understand how this can be ok to live with. He’s already lost 20 lbs and these drs know it cause it’s all in his charts from being in the hospital a week ago. Can anyone living with these diseases offer suggestions? I know they say these diseases are very individual but everything we’ve tried doesn’t work. Any help would be much appreciated

bond1111

7/8/2018 10:28:14 AM
Member since:
Apr 2016
Total posts:13
early stages UC

I have early stages UC and it is definitely not that bad, it’s very manageable with flare ups (does not effect my bathroom routine). The degree of symptoms he is having sounds like IF he does have colitis, it has progressed quite a ways so he may have had it for a number of years before hand. I am not a medical professional, the sure way to know what he is suffering from is a colonoscopy and stool test. Also, to keep an eye on what he eats and limit/avoid the foods that cause the flare ups, along with stress. Treatments usually start with anti-inflammatory pills to limit flare ups. That’s my experience with the disease, hope this info helps.

BrandonGurl2017

7/8/2018 10:40:11 AM
Member since:
Jun 2007
Total posts:1203
Dr Mackalski

She is such a kind heart, and her specializes in Gastroenteritis ( Chrons/ Celcic )  
I highly suggest you get a referral. She has a long wait but hey, long waits something. I’ve seen her and she’s done nothing but help

cotr

7/8/2018 10:59:38 AM
Member since:
Apr 2009
Total posts:432
.

I have had crohns for 38 years, what are you trying to find out?

cotr

7/8/2018 11:24:55 AM
Member since:
Apr 2009
Total posts:432
.

  
cotr said "I have had crohns for 38 years, what are you trying to find out? "

Pm me if you want

ReginaFlange

7/8/2018 11:33:59 AM
Member since:
Jan 2018
Total posts:24
CBD oil

My sister in law suffers with chrones and has found much relief from taking cbd oil. Still controversial to some but a after a week of using it, she syarted to get huge relief from the pain and bad flare ups. Obviously she isn’t cured but it has given her a better quality of life.  
 
And my dog was diagnosed with IBD & i started him on the pet cbd oil, & its been a life saver for him.  
My 2 cents, and no i dont sell the stuff, we buy it online from this place:  
 
https://www.cannabiscare.ca/

Jeffer83

7/8/2018 12:01:40 PM
Member since:
Mar 2009
Total posts:55
cotr

One of my questions is, what kind of medication are you usually on? Let’s say day to day or during a flare. All they have given my husband is an anti inflammatory and when in the hospital they gave him a stomach acid reducer.

Abracadabra

7/8/2018 1:57:00 PM
Member since:
Jan 2015
Total posts:112
humira

If he has an official diagnosis and other pres:cription medications don’t help control symptoms of the disease tell him to ask to use biologics, humira injections.

cotr

7/8/2018 2:05:30 PM
Member since:
Apr 2009
Total posts:432
.

I sent you a pm.

Robbie

7/8/2018 2:43:07 PM
Member since:
Apr 2005
Total posts:454
Observation

I am not a Doctor but I do know several who have this disease, and have seen many others with it.  
My observation with just about all of them, not all, is they consume a lot of caffeine, such as coffee, hot choc, carbonated drinks etc. Check labels caffeine is added to many products.  
Another observation is that usually their diet contains a lot of carbohydrates, cereals, pasta, breads, potatoes, and 0% fat yogurt. When you take the fat out of yogurt all you are left with is Carbs !!!

cotr

7/8/2018 2:53:20 PM
Member since:
Apr 2009
Total posts:432
.

  
Robbie said "I am not a Doctor but I do know several who have this disease, and have seen many others with it.  
My observation with just about all of them, not all, is they consume a lot of caffeine, such as coffee, hot choc, carbonated drinks etc. Check labels caffeine is added to many products.  
Another observation is that usually their diet contains a lot of carbohydrates, cereals, pasta, breads, potatoes, and 0% fat yogurt. When you take the fat out of yogurt all you are left with is Carbs !!! "

Not sure what you are trying to say

Robbie

7/8/2018 3:00:06 PM
Member since:
Apr 2005
Total posts:454
I am saying

Watch carefully what you put into your body it all effects your health one way or another.  
I have seen a couple of people who cut out the things I mentioned and within a short time got much better

cotr

7/8/2018 3:12:43 PM
Member since:
Apr 2009
Total posts:432
.

Yes you have get to know what your body can take, but everything you mentioned here are things that do not bother me. Everyone is different. Spicy foods and very rough fruits and vegetables are the things that my body will not tolerate.

Robbie

7/8/2018 4:06:08 PM
Member since:
Apr 2005
Total posts:454
cotr

Nice to see that you have things under control and that you are not bothered by the things I mentioned.  
However I still stand by my observations. Some that I know have said I don't drink much coffee ! but, it may be that one cup a day may be too much.  
Caffeine is known to strip your intestines and colon of the protective mucous layer; then you are subject to ulceration.

Jeffer83

7/8/2018 5:12:19 PM
Member since:
Mar 2009
Total posts:55
diet

I agree that diet completely effects symptoms. However, he has been on a liquid/soft food diet without caffeine, or dairy for almost 3 weeks and still struggling. Everything online that I read says that most get out on a steroid or antispasmatic until the flare is over but for whatever reason these drs don’t prescribe those. I was curious if others were on them during flare ups

TOOTSIE

7/8/2018 6:20:00 PM
Member since:
Jan 2011
Total posts:502
20 plus years

i had mine diagnosed by dr norman many yrs ago then started seeing dr dhalla but hate waiting cancels and everything else there so i switch to  
Dr Mackalski  
 
awesome lady and knows her stuff your fam dr and er docs are no where near qualified to deal with it ask your fam dr to send u to her asap

1984FadedStar

7/8/2018 6:29:53 PM
Member since:
May 2012
Total posts:769
father

My dad has it. He is in a daily med for it. Flare ups he gets a steroid. Once you have a diagnosis it helps. Keep going into your doctor. Ultimately it was my dads oncologist that figured out what it was and sent him to someone in Winnipeg.

Tater

7/9/2018 12:08:36 AM
Member since:
Jul 2013
Total posts:366
Origins of ulcerative colitis

Robbie had mentioned thinking that caffeine or carbs cause ulcerative colitis/crohns..... My mom has had UC for over 40 years, it developed during pregnancy. My aunt also developed UC during pregnancy. UC Is an autoimmune disease. It's not caused by drinking coffee .

Stay Positive

7/9/2018 10:49:33 AM
Member since:
Oct 2008
Total posts:382
Foods Affect People Differently

In the huge scope of things, everyone has different responses to different foods. That is why the eliminating and trying foods just like allergies is so important with your doctor. A few that I know that have extreme UC have found help with flare ups by eating gluten free.

TimHorton

7/9/2018 12:30:56 PM
Member since:
Apr 2013
Total posts:43
.

In my experience...Once an official diagnosis is made, and the affected area of the intestine is identified they will for sure design a treatment plan for him. It will usually start with a heavy dose of steroids that will taper as time goes on, and a maintenance drug will likely be prescribed as well. There are lots of treatment options. Hang in there!

Jeffer83

7/9/2018 12:44:52 PM
Member since:
Mar 2009
Total posts:55
thanks

Thanks for all your responses, they’ve all been very helpful in giving me insight on which direction we need to be headed. Here’s hoping we can get an official diagnosis sooner than later!

LaDeeDa

7/9/2018 3:22:09 PM
Member since:
Jun 2012
Total posts:20
I Have Crohn’s

I see Dr.Makaski as well and she is amazing and very kind and understanding. I would also recommend you get a referral ASAP to her or any gastrointestinal Dr. I am on Humira and have been for a number of years. A Fast short term “fix” or level up available is steroids like Predisone but it is not a long term solution and is a bit rough on your body, but it is also an amazing drug imo. If I could be on it safely for ever I would as it makes me feel amazing in many ways, but as I said has some bad sides long term. I have also been on Remicade and some others. Please feel free to msg me and I would gladly speak to you about it. I have had been diagnosed with crohns since I was 15. I am now in my 30s. It took me Going to Toronto sick kids to get diagnosed properly. I know it can be frustrating. I hope you get some answers and a plan in place. All the best to you guys.

Tracterz

7/9/2018 8:11:28 PM
Member since:
Jun 2015
Total posts:8
Probiotics

Another option to consider is to i:nclude probiotics in your diet. Probiotics are good bacteria that primarily line your gut and are responsible for nutrient absorption and supporting your immune system.  
 
I have ulcerative colitis and find some relief with these foods. You don''t need much but I try to i:nclude them in my daily diet. Probiotic-rich foods i:nclude lacto fermented foods such as sauerkraut, pickles, kimchi, milk kefir, tempeh, miso, kombucha, nato, yogurt, apple cider vinegar, salt-brined olives.  
 
This is not a cure but a comfort aid. As already mentioned, our digestive systems are very individual and so I'm offering this as another option.  
 
Hopefully you will be able to find something that alleviates your husband''s symptoms. Best wishes.  
 
Edited by Tracterz, 2018-07-09 20:13:43

Abbysmum

7/9/2018 9:55:31 PM
Member since:
Mar 2009
Total posts:3226
Interesting

  
Stay Positive said "In the huge scope of things, everyone has different responses to different foods. That is why the eliminating and trying foods just like allergies is so important with your doctor. A few that I know that have extreme UC have found help with flare ups by eating gluten free. "

I had a good friend back home that had colitis. One of the things she said was a lack of fibre in her diet helped tremendously.  
 
Gluten-free diets are notorious for lacking in fibre. I wonder if that's the mechanism at work vs. the actual lack of gluten?  
 
Either way, I'm glad your people have found relief.

GO JETS GO

7/9/2018 11:50:22 PM
Member since:
Nov 2010
Total posts:269
.

  
Jeffer83 said "Anyone in Brandon or the Westman region living with either of these conditions. My husband is awaiting diagnosis for one of these but having a lot of issues dealing with a flare up while we wait. He’s been in and out of walkins and er but every dr he sees seems to have a different idea how to deal with it. He was hospitalized for almost a week where he saw the dr most well known for dealing with these diseases but wasn’t all that helpful. He is also the dr that we’ve been waiting for months for diagnosis but keeps rescheduling. He currently can’t eat, can only drink a small amount of water, running to the bathroom multiple times a day and dry heaving. Took him to ER yesterday but they sent him home and basically said it’s the nature of the beast. I don’t understand how this can be ok to live with. He’s already lost 20 lbs and these drs know it cause it’s all in his charts from being in the hospital a week ago. Can anyone living with these diseases offer suggestions? I know they say these diseases are very individual but everything we’ve tried doesn’t work. Any help would be much appreciated "

Ask your family doctor for a referral to see Dr. Barbara MacKalski. I was diagnosed with Ulcerative Colitis last summer. The symptoms that you describe sound nearly identical to the symptoms that I experienced, including the weight loss. I could not eat anything, & lost approximately 30 lbs in just a few short weeks.  
 
The drug that I have been prescribed is called Mezavant. In my opinion, it is a wonder-drug! Having said that, before any drugs are prescribed, a colonoscopy will need to be scheduled. A colonoscopy will allow for a proper & definitive diagnosis. Mine was performed by Dr. Marvin Goossen, who was excellent! After I was released from hospital, he referred me to Dr. MacKalski for ongoing care. She, too, has been excellent!  
 
Please feel free to PM me if you have any questions whatsoever. I would be more than happy to speak with you both about my personal experience.

artsylikes

7/10/2018 1:07:54 AM
Member since:
Oct 2016
Total posts:70
I’m sorry to hear

All of you dealing with this. I hope and pray that you get the answers you need and can look forward to recovering. Take care. I think it’s wonderful to see everyone helping each other, that is how it should be in life every single day. Get well soon

Bebop1978

7/10/2018 6:40:17 AM
Member since:
Jan 2012
Total posts:78
Snake juice

Check out snake juice on YouTube !! The guy that runs the page really seems like a jerk to me but ..... lots of people say it helps with all issues. I personally have been at it since January and have had some amazing health changes !!

Jeffer83

7/10/2018 9:09:05 AM
Member since:
Mar 2009
Total posts:55
Surprised

I'm surprised by how many people in westman are dealing with this terrible disease. I've done lots of research online and the basic consensus seems that it's such a personalized disease it makes it hard to diagnose and treat. Especially since GP's don't seem to know a whole lot about it. It's nice to know that even though there are lots dealing with it that you all seem to have decent control of it.

greyowl

7/10/2018 11:55:09 AM
Member since:
Apr 2012
Total posts:5
this may help

I was diagnosed in 1983. I’m now 70. Dr MacKalski is your answer! Budesonide is a steroid that has about 10% side effects of prednisone. I was on it for years. Lived a pretty normal life. Finally surgery recommended and done in 2010. Was in NO distress at that time. Dr consensus was get it over with. In the meantime: avoid dairy products, all carbonated drinks except club soda, (beer is deadly), crisp cooked vegetables, nuts, and contrary to popular advice, whole wheat or high roughage foods. They are hard on the gut lining as noted in a previous comment. They will add to bathroom trips. Oatmeal is soothing on the gut. Rice and coconut milk ok. Ground meat easier to handle. Avoid steak, chops, etc. Casseroles ideal. Get a sitz bath and USE it. Relaxing and soothing. Calms the gut.  
I could go on but hope this helps. In 1983 I was told to get my affairs in order. That makes me a bit of an expert.

greyowl

7/10/2018 12:18:26 PM
Member since:
Apr 2012
Total posts:5
further to...

Re my previous post. I forgot to mention I had Crohns. I can’t comment re colitis.

 
 
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