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Time to get real

I was diagnosed with crohns 6 years ago after I was very sick during my first pregnancy. I had to have surgery and had large sections removed from 3 different areas. At the time it was all a whirlwind and I didn't actually take it all in. I am now facing the possibility of another surgery and have realised it is time to face the facts and admit I have this disease. I hate self-pity within myself but am angry to have been dealt this hand but want to come to a place of acceptance. I now have 3 young kids so surgery will make things extremely difficult (as I am sure it has for other people for various reasons). I want to really focus on my nutrition and discover the foods I should be avoiding but don't know the best way to go about it (other than trial and error). If anybody has any suggestions that would be great. I am lucky to have a great support network but still feel so alone.
 

David

Co-Founder
Location
Naples, Florida
Hi Nic and welcome to the community.

First off, congratulations on entering the acceptance phase. Good for you :)

How are you feeling these days? Are you on any specific medications?

As for diet, I'm personally a big fan of both the Paleo and Specific Carbohydrate Diets which can be found in our Diet/Fitness/Supplements forum. They're not perfect for everyone, but you can contour it to work well for you. I personally don't think diet by itself is the end-all for Crohn's disease but I think it's a very important part of a broader treatment regimen.

We're here for you :)
 
Finally went to my GI yesterday after a year and a half. Should have gone much sooner but was obviously in very deep denial. Going for colonoscopy this afternoon and he is worried the disease may be in the parts that were reattached. Feeling very anxious and nervous but all of this has lead to my awakening in getting real about it. I will be seeing my GI again next week for a consultation and he did say I should be on medication so no doubt that will be the next step - if not surgery. I was on Salazopyrin when I was first diagnosed and have taken prednisone intermittently. Thank you for your advice re diet and your kind words.
 

Angrybird

Moderator
Location
Hertfordshire
I just wanted to say welcome to the forum and wish you all the best for the upcoming scope and appt. Please keep us updated on how you get on.

AB
xx
 
Thank you for your support. Results are not great from the colonoscopy and I ended up in hospital last night after the procedure due to bleeding. Fortunately it doesn't appear that it is anything other then everything being aggravated during the colonoscopy. Home now but in a lot of discomfort. They had to do many biopsies. They found active crohns in the large bowel where it hasn't been before, some in the small intestine and there was a stricture near my transverse colon that they couldn't pass through to see further up. They are worried the stricture is colon cancer. I am going for a CT today and seeing my Dr for results tomorrow afternoon. I am a mix of emotion from sadness to feeling numb to thinking I have been so neglectful to myself.
 

Angrybird

Moderator
Location
Hertfordshire
Oh hun I am sorry you have this horrible worry to go through, I will keep fingers crossed that the scan shows the stricture is down to something less sinister. Please keep us updated when you can on how you are getting on.
 
try turmeric!!

but take it later in the day after eating your meals! as it is a powerful mineral chelator and can interfere with iron absorption and other minerals.take with pepper to enhance absorption.

also, try standard medications!!!

also, read the Specific Carbohydrate diet!
mainly its following a low lactose and sucrose diet with limiting to select starches and eating lots of yogurt. bad bacteria love lactsoe and sucrse and this is the main cause of diarhea symptoms, but inflammation may not be affected too much by this diet.

other alternatives to try
-grape seed skin and extract(resveratrol) try getting 25-50 mg of resveratrol from this sources, do not take the form of resveratrol from the herbal source its toxic, only when sourced from grapes is it safe, because its food.
-boswellia
-rose hips(contains compounds similar to boswellia, pentacyclic triterpenoids)
 
So got the good news that it isn't cancer. The stricture is 7.5cm in length at the part where they did a resection during my last surgery in 2007. At this stage my GI doesn't know if it is scarring or severe inflammation so on meds with the hope inflammation will reduce and will have another scope in 6 months time to see what is going on and if surgery will be required. I am on prednisolone, 6mp & pentasa. Due the stricture almost closing over the intestine, I have a very real chance of a blockage occurring so I can only eat food they I can turn to mush before I swallow. I'm fine with that just stuck on ideas for snacks as I can't have too much dairy and can't eat fruit at all. Feeling like I have dodged a bullet so to speak and making sure I am looking after myself properly.
 

Angrybird

Moderator
Location
Hertfordshire
Oh I am pleased that it isn't cancer, I am curious as to why they cannot tell whether it is scarring or inflammation though that is causing the stricture. I would say to give the meds ago but if the pred is not improving things after a couple of weeks to then to go back to your doc - definetly not to wait six months for another follow up scope because if it is scarring you are likely to encounter problems before this point. With regards to the diet side of things do check out our diet and sups forum as there my be some info here on what to try: http://www.crohnsforum.com/forumdisplay.php?f=17.

Please continue to keep us updated on how you are getting on.

AB
xx
 
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