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Hey guys and girls!!

How ya going? Im Chris from Perth in WA.
I was diagnosed with crohns when i was 16, so 7 years ago now, cant say ive had much success with it since then.
Ive tried a few different things and been on prednisolone from day one. Currently on 15mg in morning 5mg at night... right now it feels like it needs to be a higher dose. The bleeding is bad. Nights seem the worse.
.
I used to be a fit and healthy kid and have struggled every since being diagnosed. Holding down a job can be really difficult. That and training involved prior to getting a job as i can come down with a cold or something draining at the drop of a hat. REEEEALLY FRUSTRATING!!
Tried immfliximab, humira, stemm cell trial studys at royal perth hospital.
Problem is ive never really known what to do for diet and therefore just went by the rule "whatever is bad for a normal person is twice as bad for me".
Other problem is being 16 through to 21 is a hard time to forceably stop partying. So i can say ive taken the medications and felt good and probably screwed it all up by tryn to live a normal lifegoing out partying with friends. Just to take more meds to make myself "feel better" without really being better.
Im pretty sure if i had approached the drinking and diet a bit more strongly along with meds like humira then things migt be different..... not sure though.

If your still reading.. cheers. I kno its a bit of a book.
Im hoping that people on here will be able to shed some light on a few things.
Like are there any alternatives to prednisolone? How do you stop bleeding with no medications but prednisolone without upping the dose.
Aaaaand now im looking into a gluten free diet. Anyone had any luck???

The only thing ill add is my specialist doesnt seem 100% sure that i have crohns... always says it may b ulcerative colitis.. i dont understand how he cant know..

Anyway..thanks for reading..
 

Jennifer

Adminstrator
Staff member
Location
SLO
Hi chriscross and welcome to the forum! :D

From your post it sounds like your mainly affected in the colon which means that its possible that Entocort may not work for you unless its in the upper portion of the colon (ascending) as it treats the ileum and the ascending colon. http://www.drugs.com/pro/entocort-ec.html

Besides steroids one thing that helped my bleeding get under control was gut/bowel rest. I did it with an IV in the hospital (had bleeding in my ileum) and it took a couple months for the bleeding to stop (I wasn't treated with medication because this was right before I was diagnosed and they didn't know what was wrong). Bowel rest is mainly a liquid diet (with an IV you can go without liquids ei: Total Parenteral Nutrition/TPN) and there are treatments similar like Enteral nutrition/EN: http://www.crohnsforum.com/wiki/Enteral-nutrition Talk to your doctor about possibly trying EN or adding another medication to the Prednisone such as Mesalamine/Asacol possibly or switching to Entocort (if that ones possible).

The partying lifestyle can be a hard one to stop but stopping would help to improve some of your symptoms as you're currently dealing with an irritated/inflamed bowel.

Ulcerative Colitis/UC affects the colon whereas Crohn's can affect you throughout the digestive tract (including the colon which would be called Crohn's Colitis). With Crohn's one might find Granulomas in a biopsy from a colonoscopy whereas you wont find any with UC. Also Crohn's tends to be patchy in nature (skips sections) whereas UC will affect a whole section without skipping. Here's more info on how to tell the difference: http://www.crohnsforum.com/wiki/Crohns-Disease-vs-Ulcerative-Colitis

Hope some of that was helpful. Keep us posted on how you're doing. :)
 

Judith

Crohnsforum Science Advisor
Welcome to CrohnsForum Crisscross.

I am sorry you are having so many symptoms. I am curious how your physician(s) diagnosed you. What tests, labs, genetic testing was ordered? Also, do you have a family history of [wiki=Crohn's Disease]CD[/wiki] or [wiki=Ulcerative Colitis]UC[/wiki]?

Do you have other symptoms elsewhere in the body ([wiki]Extraintestinal manifestations[/wiki])?

It seems that you have been on the Prednisolone for an extremely long time but the dose is also pretty low. Were you ever on a higher dose for a short period of time? If so, did it appear to help your symptoms?

The Gluten Free diet is probably worth a try. You need to be strict about it and do not cheat to allow your gut time to heal. It will take a few weeks - months before you begin to see a difference but if you do it will be completely worth it. You may want to add a Lactose Free diet at the same time. Many people that have Celiac disease are [wiki]Lactose[/wiki] intolerant as well. Celiac Disease (immune response to gluten) can cause "blunting", or shortening of the fingerlike projections (Villi) in the small intestine. The majority of Lactase (the enzyme that breaks down Lactose) is made in the tips of these "fingers".

In short:
Lactase = made in the Tips of Villi
Celiac = "Blunted" Villi
Blunted Villi = Reduction in Lactase Enzyme = Lowered ability to digest Lactose

Strict adherence to a gluten free diet can allow the gut, and the Villi, to heal (although may take a very long time). In time, you may be able to tolerate milk products again if Gluten is a source of your symptoms.

You may also be interested in What are your safe and unsafe foods? Notice Beer in the unsafe foods list (yeast is a major trigger food for many people with Crohn's).

Unless, when you talked about "partying", you were were instead referring to [wiki]Medical Marijuana[/wiki]. Research shows that some patients may feel mild relief of symptoms with cannabinoids. Although, I do not know the legal aspects of Medical Marijuana where you are living, and please discuss any and all medicines (including Medical Marijuana) with your physician before making any changes.

On a related note, tobacco smoking is a serious trigger for people with Crohn's Disease and smokers generally have a less favorable prognosis than nonsmokers. This includes secondhand smoke as well.

I hope it helps. Please keep us updated with your progress.
Welcome to CrohnsForum. :)
 
Hi Chris and :welcome:

I grew up and went to Uni in Perth - lovely city but a bit hot for me these days.

You say that you tried infliximab, humira, stem cell trial studies at RPH. Did any of these show positive results? As others have said, it seems a low dose of prednisolone to really hit the disease hard.
 
Hey guys, i just wrote a huge response covering everything and answering all your questions and then technology said NO! how i hate it!!!!
So here we go having another go at it. Thanks all for your responses, really appreciate it.

Start off by saying, yeah it does get pretty hot in Perth these days!!!

I was originally diagnosed by symptoms, colonoscopy and bloodtests.
My first trip to hospital required 7 blood transfusions alot of fluids and a months stay. Wasnt fun! There isnt any history of crohns or uc in the family. Although my grandad had bowel cancer, i think.

I have been on prednisolone from day one and hydroquat when in hospital. I have been on much higher doses of the prednisolone and yes it definately helps the symptoms. As the symptoms improve the dose is lowered. I have never been below 10 mgs of pred. I would love to get off it. I have tried mesalazine, didnt seem to work... buut i was still in party mode.

Going to have a chat with my doctor soon about the whooooooole situation because he just seems to want to go start to the surgery option which is a no go at the moment.

The treatments i have done all helped initially but i was still stuck on going out and having a good time when i felt i could and eventually ended up back where i started.
My doctor has reached the point where he wont do much more treatment as he thinks we are simply bandaiding the issue with the drugs which could have bad outcomes in the future.
Fair call.. buuuut id like to give it another go.
The stem cell treatment/ trial seemed to be working.. then halfway through i got a gastro bug. Which basucally knocked me for 6 and there was no coming back from that with just the stem cells. So there was no major improvement in the results they a from week 1 -week 6.

I feel as though i should increase the dose of my pred while im trying this diet to 20-25mgs in the morning(not a split dose). Im really not keen on it though as i want off that drug reeeeally badly.

My doctor recently mentioned trying immfliximab again but because ive been on it before theres a 40% chance i may have an allergic reaction.... which means i need to be on Imuran for a month or so to reduce the chance. Downside is i seem to get sick when on Imuran or reeeeeeeally sunburnt.
Before xmas he put me on the Imuran and i ended up with bronchitis. Not cool!
Right now im doing a telecommunications pre app so cant risk getting sick.

Ive heard a little about the marijuana and tobacco. I used to smoke marijuani mixed with tobacco. After a while i stopped smoking the two together as i realised i dont smoke cigarettes. Shortly afer i stopped smoking alltogether. Ccant say i noticed any relief, was just smoking it to escape how shitty things had become, in saying that, maybe that was part of the relief.

Drinking....... now thats been hard one. Everywhere i go theres drinking involved. For a long time i though beer would be a better option for me as i considered it more of a food.. just recently ive been told otherwise..
So what can you drink?? ive pretty much figured that alcohol is a poison/immflamatory and will be bad with crohns/any digestive immflamation regardless of how its consumed.
Think its one that gets put completely aside until things are under a bit more control.. and once back, small doses.

With dairy, lactose... i dont really eat or drink much of it. That i know of. Dont like milk only thing id have is butter and cheese. Love cheese but can cut it out it i have to, just add it to the list haha
Im sure theres a few things i consume that contains actose, ill have to keep and eye out for it while im checking labels during this diet. Which i might add is expensive!!!!

Whats peoples thought on red meats?? Ive been told to maybe give that up for a while and see how i go.. that and food with skins, grapes, capsicum, peas. Thats sort of thing.
Im finding this gluten free diet might be gluten free but some things seem high in sugar and fibre... is that okay????

Thanks again to everyone for your input!! Is really good to hear from people who can relate and have advice. Thanks HEAPS!! :)
If i havent answer a question or if you have another or any advice/answer to my questions let me know!!
Chris
 

Judith

Crohnsforum Science Advisor
Chris,
Beer is a bad one- many people with Crohn's have an inflammatory reaction to yeast. You may have more of an inflammatory reaction to unfiltered beers.

Sugar is another one to avoid. In general, high sugar diets feed microbes in the Gastrointestinal tract, causing them to overgrow. This can cause [wiki]Microbial dysbiosis[/wiki], or an imbalance in the microbes that reside in the Gut. This imbalance can result in pathogenic microbes to overgrow and cause symptoms or even overgrowth in the beneficial microbes can cause the immune system to overreact, causing a flare.

Best of luck... and remember, No beer tastes as good as healthy feels. :)
 
Chris,
Beer is a bad one- many people with Crohn's have an inflammatory reaction to yeast. You may have more of an inflammatory reaction to unfiltered beers.

Sugar is another one to avoid. In general, high sugar diets feed microbes in the Gastrointestinal tract, causing them to overgrow. This can cause [wiki]Microbial dysbiosis[/wiki], or an imbalance in the microbes that reside in the Gut. This imbalance can result in pathogenic microbes to overgrow and cause symptoms or even overgrowth in the beneficial microbes can cause the immune system to overreact, causing a flare.

Best of luck... and remember, No beer tastes as good as healthy feels. :)
Agreed! Healthy would feel great! Im still not too sure if i want to increase my dose of pred but i dont think i have a choice right now. I get a puffy face :-/
I have heard of the sugar sitting in the gut and feeding the bad bacteria.
Also with this gluten free diet i spose ive got to adhere to the crohns aswell soo really.
Gluten free, low sugar and low fibre.?
Does anyone else take multivitamins and a probiotic. I recently started taking centrum and a swisse probiotic.. always wonder if i need more than the recommended dose as i obviously dont absorb things properly???
Chris
 

Jennifer

Adminstrator
Staff member
Location
SLO
A multivitamin a day is one thing but if you want to know if you're low in any vitamins then you should have blood work done to check if you're low or deficient in any and then start supplementing from there. About a month after you begin supplementing then you have blood work done again to see if you need less or more. You can have your GP or GI do blood work to check for any vitamin deficiencies.

I take a multivitamin everyday, plus 5,000IU of D3 per day, I also take 650mg of Iron a day as mine is usually low and have a B12 shot every other month because I'm not absorbing it (I've had a bowel resection already where a portion of the ileum was removed, the main section that absorbs B12). Your blood work will likely tell a different story on what you need to supplement and how much.
 
A multivitamin a day is one thing but if you want to know if you're low in any vitamins then you should have blood work done to check if you're low or deficient in any and then start supplementing from there. About a month after you begin supplementing then you have blood work done again to see if you need less or more. You can have your GP or GI do blood work to check for any vitamin deficiencies.

I take a multivitamin everyday, plus 5,000IU of D3 per day, I also take 650mg of Iron a day as mine is usually low and have a B12 shot every other month because I'm not absorbing it (I've had a bowel resection already where a portion of the ileum was removed, the main section that absorbs B12). Your blood work will likely tell a different story on what you need to supplement and how much.
Ive had bloods done in the past and nothings really been mentioned besides iron and potassium a few times.. I might see if i can get some tests done specifically looking into the levels of everything. Iv just yesterday started a b12 supp aswell.

Saw my doctor the other day, he doesnt seem to have much faith in the gluten free diet. Ive noticed slight change but sugar is still a tough one to avoid.. sometimes its nice to eat something that tastes awesome haha
 
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