New to this forum

Hey guys my name is Avi!

I apologize in advance if this might is a pretty long post

I'm 23yo as of last week. I live in Sydney, Australia. I was originally diagnosed with crohns when I was about 12. Up to that point I had stunted growth. The doctor put me on anti inflammatory pills and I pretty quickly grew tall and gained weight. For the next few years the CD seemed to b pretty much in control. Thing is, I got so used to many of the symptoms I just considered them normal: constipation, mucosa and small amounts of blood in stools, and fatigue, that I'd say was the worst, people used to think I was stoned cause I was always so lethargic.

Over the years I've also had ups and downs, but I always tried to sorta shove them under the carpet and act like everything was normal. I'd even lie to my doctors about the pain I was in, just to try and seem normal, like I wasn't affected by the disease. I used to cry from the pain every time I went to the toilet (my crohns is in the small intestine and somewhere right before the anus).

For a while I used to drink heaps of coffee and energy drinks, It was great coz I wasn't fatigued, as long as I had my coffee every couple of hours I felt alive, rather than feeling so fatigued I couldn't even smile or get excited about anything.

Every time I stopped drinking caffeine though, I would get so fatigued I couldn't do anything. My father came over for a holiday and all I could think of was staying at home, just lacked motivation to do anything. I would go for runs, that would give me energy for a bit. But an hour later I was even more tired. The same would happen when I had lots of sugar, I would get energized for a short while and then just crash.

Recently a new guy came to work and it turned out he had CD too. He had a pretty severe case and just flew to New Zealand for an operation. He did mention some diet stuff for my crohns tho. So on my next visit to my GP I asked her if there were any diet advice I should be following, she said I should see what works for me, and gave me a link to a site about crohns. I saw there many ppl were off milk so I tried that and it made me feel a little better.

I also found an article about FODMAPS (you can find the abstract for this article on PUBMED but need special access, say through medline, to get the full article) . This is a diet where u basically go off all fructose, lactose and other sugars you might have trouble digesting. I got the full article and have been following the diet for the past two weeks, it has worked wonders! I have been much less fatigued (without any coffee or tea for 2 weeks now), less mucosa, practically no blood. I have had maybe 2 episodes where I got fatigued for a couple of hours, but thats it. If anyone wants any info about this diet, drop me a line.

Yesterday I went to my specialist and I asked him if I could get checked for fructose and lactose malabsorbtion (which would basically explain why the diet I was on was working well). He said it couldn't be that coz I didn't get extremly bloated and have diarrhea every time I had some milk. He also said the research about any diet for crohns was inconclusive and so he wouldn't make any dietary recommendations. I am pretty upset about this. I mean, I'm sure many of you have found that certain things work really well for you. And the doctor just seemed to refuse to believe that diet could play a major role in my crohns.

He also discovered I had a little flare up going on. so he has put me on antibiotics for two weeks.

Sorry my message is so long. It does feel good to let it all out tho. I've had to explain to my girlfriend about my crohns to explain why I was going on this crazy diet (no wheat, no sweets, no dairy, and many other no nos). She wasn't too impressed, lol.

Thanks for reading through.
All the best

Welcome

Hello Avi!

I want to welcome you to the Crohn's Forum.!!
I know you will find lots of useful information here
and plenty of fellow Crohnies to share and ask questions
regarding your meds, diet etc.

I am pleased you found a diet that iseems to be working for you.

I have found, as have others, that Crohn's disease and its treatment
is different from one person to the next.

Again welcome and feel free to read though the forums, comment and ask questions.

Hugs~Nancy

Welcome Avi!

Hi Avi!

Welcome to the boards. I've not been around long but the people here are truly great, and I hope you enjoy here as much as I do.

avirtagon said:

Yesterday I went to my specialist and I asked him if I could get checked for fructose and lactose malabsorbtion (which would basically explain why the diet I was on was working well). He said it couldn't be that coz I didn't get extremly bloated and have diarrhea every time I had some milk. He also said the research about any diet for crohns was inconclusive and so he wouldn't make any dietary recommendations. I am pretty upset about this. I mean, I'm sure many of you have found that certain things work really well for you. And the doctor just seemed to refuse to believe that diet could play a major role in my crohns.

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Well, I'm not in the medical profession, so I'm not trying to give medical advice but perhaps you should get a second opinion about the diet issue.

For me (and I was diagnosed 18 years ago, when I was eight), diet has always played a huge role in my life with CD. It started with removing products with lactose out of my diet (and overly processed foods, and refined sugar)--you can imagine how well that went over with an eight year old whose favorite food was chocolate ice cream.

But it worked, and helped me get into a remission. Since then, docs have learned a lot more about the foods we eat, and they affect our IBD. Although the information might be inconclusive because it's pretty anecdotal (as Nancy said, we all have different dietary needs, so very few of us are on the same eating plan).

As a fun (for me, probably) example: When I was a counselor at an IBD summer camp for a few years out here in California, the counselors would arrive a few days before the campers, and we would devote an ENTIRE day to reading massive amounts of paperwork about our camper's dietary needs. Each cabin counselor had to be well-versed in his/her kids eating guidelines, since the parents were trusting us to enforce them.

And these kids had a LOT of different diets. In the interest of trying to solve most of the camper's needs, the kitchen staff prepared the blandest food imaginable. (Oddly enough, we also happened to be a Jewish camp that was filled during the school year with Judaism-related camps. During the summer, they let local charities involving sick kids to use the camp at very little cost--except we had to keep kosher! None of us really complained about it but we did find it interesting, since we already had enough food problems to deal with regarding the campers, we also had to keep the place entirely kosher.)

But back to the point--There's a lot of great information about how diet relates to CD. Books, articles (as you have already found) and people's personal stories. If I am wrong, I definitely want someone to correct me but, from what I've experienced, changing around parts of your diet--just to see what works for you, and what doesn't--has never been harmful to the person involved. If that makes sense. Even healthy people have foods that they stay away from (my husband, who doesn't have digestive problems, happens to be allergic to iceberg lettuce, even though it's mostly water, it makes him pretty sick).

So, to cut this short, I'm glad you're beginning to find a diet that works for you! There's also a lot of great information on these boards about vitamins and supplements (GNC Crohn's Man is a wonderful source of information about dietary supplements--because of the restrictive diets most of us are on, we need to make sure that we're still getting the healthy stuff that our bodies, and GNC Crohn's Man knows a lot about what our bodies need to stay healthy).

Katie.

Welcome Avi!

I know the information (or lack thereof) regarding diet and Inflammatory Bowel Disease can be frustrating, but you should be able to get some general guidelines here. A low residue or low fibre diet can reduce symptoms for some, and involves avoiding all foods with hard skins (in raw form), nuts and seeds. While you may not eat peas in raw form if on a low residue diet, you may find them tolerable if they are cooked before hand. Also you may want to try avoiding alcohol, caffiene, and spicy foods. I know for me garlic was pretty bad for my stomach to handle, so I stuck to mostly bland foods.

During flairs, you can try sticking to liquids (juices and soup) or stick mostly with a BRAT diet (bananas, rice, apple sauce and toast).