Just Diagnosed

[chefcutiepie]

Hi All, Im 26 years old and got diagnosed with crohns last tuesday. Have been having tummy troubles for about a year, but it worsened about a month ago. On a friday evening I had a lovely green salad, about 4am the next morning I woke up with severe sharp pains , the worst pain i have ever had and ended up going to the ER.( second time in just over a week) . Doctors thought it may have been my appendix but after much poking and proding decided it could be crohns. I was admitted and prepped for a colonoscopy and 4 days later I was diagnosed with moderate-severe crohns. I am having a hard time with it right now, still in a flare and have no idea how long this can last for? especially since this is all so new and wasnt sure what to eat. The food is particulary hard for me, as I am a professional chef and love to enjoy all sorts of foods. However , after going through all I have I feel that no food is worth the pain. Im just not sure how to go about it right now? I have started a food diary, and also taking notes on how i am feeling each day. Eatting mostly white toast, crackers, pretzels right now.. and white rice. Have cut out as much lactose and dairy as possible.. but today I ended up with horrible pains and feeling just as bad as the day i rushed to the er. I think it may have been potatoes I had roasted with the skins on? I read that they are bad? Going to be tough for me, learning whats going to hurt me.

as for the meds, right now i am taking pentasa, 8 pills a day. But im fearing that it may not help. Doctor said it would be a 50/50 chance that it would work.. .so i took that chance. It seems that what i read tells me to go with predisone? what are your opinions on this?

its so hard right now, my family and loved ones are all very supportive and have been amazing. But I find that they are all telling me bundles of info that they are reading and I find it overwhelming and confusing because alot of the info contradicts things that ive been told or read already.
My very loving and supportive boyfriend has directed me to this site, and im hoping that it helps, as you all know what I am going through. I just need to advice, tips or anything information at all from someone who is in the same boat as me. thanks in advance.

desperate and depressed.
the crohnie chef :depressed:

 

[fadingsun430]

Hello Chef
I am sorry to hear you are going through a rough time. I was also having severe stomach pain and D, and was diagnosed by colonoscopy just this past March. At this point I was just as depressed and desperate as you. I had never even heard of anything called crohn's before. I started on Pentasa as well and also a newer steroid called Entocort. After a few months things were not improving as fast as my doctor and i wanted and we started prednisone. People have different opinions on the steriod, but for me it worked wonders. Of course it comes with a host of side effects, but i always felt that the good outweighed the bad in my case. I could deal with some mood swings, moon face, etc etc if it could get me to eat again without being in constant pain. I was on it until September 1st, and since then have been on another drug similar to pentasa called asacol and have enjoyed remission with no steriod-dependency. In my opinion if you are not getting relief with pentasa in a couple of months then it would be time to try prednisone or something else. As for uncertainty about the disease after being diagnosed in the following months i read 4-5 books on crohns, and numerous articles on the internet. The more knowledge you can get i feel will help cope with the disease, knowing your options , etc. Hang in there this time will pass, and you will feel better.

 

[DustyKat]

Hi Chef and :welcome:

I'm glad you decided to come here. You will find many kindred spirits plus loads of info and support. Joey has given you great advice about the Pred and Pentasa. Have a good browse through the Food and Diet Forum and other forums and if you have any questions just fire away. We have a diary inclusions in the Forum Wiki, maybe have a look and see if there is anything you might like to add to what you have...................

http://www.crohnsforum.com/wiki/Diary-Inclusions

I hope you can get things under control soon and please keep us posted on how you are going. Good luck and welcome aboard!

Take care,
Dusty

 

[Dexky]

Welcome Chef!! Yeah, the pred quickly got my son's inflammation in check! Definitely worth looking into. Good luck!!

 

[chefcutiepie]

thanks everyone. I have barely gotten off the computer since I got on here last night... so much to read. I have taken notes and going to start applying the tips today. heres to hoping for the best. I look foward to sharing stories, recipes and support

 

[lynx]

Hi Chef just wanted to say hey and welcome...and sorry you had to be here...lol..but if there is a place to come where people do understand you its here. I am taking steroids right now...have been flaring all summer basically and was ignoring it until i had to be checked into the hospital in september. I was in there the entire month and when released was diagnosed with Crohn's Disease after thinking for years I had Ulcerative Colitis. My problem was I was in denial of having any disease because my flares were relatively mild. This time around though was a huge wake up as this time I am still flaring after about 6 months and Im on heavy narcotics for pain, steroids and asacol (which is basically the same thing as Pentasa.) SO, as you can imagine its been very hard. Just know you are not alone, there are a lot of us out there in the big world. I find myself trolling around on the forum a lot of times late at night when either I can't sleep because of the steroids or some little fear overcomes my common sense and I need reassurance about something.

The drugs can have strange side effects on you...asacol made my hair thin out..lol. Do not get discouraged if you find the doctors switching drugs around on you or amounts that you take that may happen. The great thing is that there is a lot of research being done on our misfortune so that possibly sometime in the near future we will all suffer less and be able to live closer to normal lives than we are now. Again, sorry you are here, but of all the online communities that I have visited about crohn's and colitis, this place seems to be the best. Welcome.

 

[Astra]

Hi Chef
and welcome

Glad you found us, there's tons of info on here, it'll take you all night to read!
I really loved the Pred, I'm glad I'm off it tho! I felt sooooooooooooo normal and felt really well. I ate for England! My appetite came back, and tons of energy, it's a real shame we can't take it long term and forever, but we can't cos it's a bone robber!
There are some downsides to it, the chipmunk cheeks, the insomnia etc but it's a small price to pay to be pain free! Go for it, if you don't like it, come off!
Our loved ones are great aren't they? But.... they're not Crohnies!
Stick with us, we're the experts!
lotsa luv
Joan xxx

 

[abo]

Hi chef,sorry to hear that you have been diagnosed with Cd,i have also found steroids great in controlling the flare ups (prednisone),but there are a great bunch of people using this site with brill info.

keep smiling,
Tom

 

[Entchen]

Hey, ChefCutie:

Want to welcome you to CF! So sorry you have Crohn's; we can all muddle through together.

Love the Sou'wester!

 

[tmgread]

Hi Chef. I know this will be frustrating since you're a chef, but I'm sure you will be able to come up with lots of creative food choices that don't bother you. I was diagnosed with moderate/severe Crohn's Colits earlier this year. I tried very restrictive diets, but it didn't really help me. Once things quieted down, I found that I can pretty much eat almost anything. Popcorn is a problem for me and sometimes spaghetti sauce bothers me, but everything else is okay. I think everyone is different. I love nuts and seeds and salads, but a lot of people on the forum are bothered by them. My doctor said to use trial and error and try to figure out if I have any trigger foods. One doctor wanted me to take prednisone but another said to just try Lialda and see. So far I'm doing fine (I think) on Lialda, but I haven't had another colonoscopy, so I'm not sure. I found that taking a fiber supplement really helped with the D. Ask your doctor first, though.

 

[Nancy Lee]

Hello Chef and welcome to the Forum!
If you need anything just holler...
someone is always close by.

 

[Nica]

Hi Chef,

Welcome to the forum! Glad you are here, I am a relatively new member here and have found the people and advice are great!

 

[lseibert]

Welcome Chef :bigwave:

Welcome to the forum, I'm sure you will find tons of information and great people. Nice to have you, it was around the same age that I started having symptoms and diarrhea. But, unlike you the doctors didn't know what was wrong with me and couldn't figure it out. So, for the next 14 years I suffered with diarrhea until I could find a doctor that could help me. Good luck with managing your symptoms and dealing with this horrible disease.

:rosette2:

:getwell:

 

[chefcutiepie]

thanks everyone for all your kind words. I am really glad to have found this site, i think it will be really helpful, especially now where I am so unsure of everything. I have been feeling good for the past few days but still cannot handle much food. Have lost 15 lbs in the last month, which worries me.

oh and a little piece of funny information:
My GI doctors name is Dr. Fardy ( sounds like Farty ), got a few giggles out of that when I first met him! I think its hilarious that he is a GI specialist with that name

 

[bisaan12]

I’ve had IBD for about 20 years. The first year of having the disease, I was told that I had Crohns. Then Doctors said I had Ulcerative Colitis. I had a colonoscopy last Month and my new GI said he thinks I have Crohns.
I took Asacol at first, and didn’t work for me. Then I switched to Dipentum, which worked for me but stopped after two years. I then got switched to Pentasa, which worked for a year only.
Prednisone will most likely work. However, it comes with the sides effects mentioned above; lack of sleep, feeling depressed, deficiency in calcium/vitamin D, change of your face shape, hair growth, high blood pressure, etc. This medicine has short term and long term side effects – even being on a low dose for a long period of time could cause adverse side effects.
I would discuss the following options with doctor before you take prednisone:
1) Lialda
2) Entocort
3) Antibiotics
4) Remicade (It put me in remission for about 7 years), but stopped to work afterwards.
5) Cimzia or Humira (they are similar to Ramicade but they didn’t work as good for me
6) Immuran
Remicade was a “Miracle” medicine for me – didn’t not have to take prednisone during the whole period I was on it for 7 years.
I am currently on Lialda and Immuran – the disease is not under control 100%, but I am able to stay off the prednisone.
If above options won’t work, or you develop reactions to them, then prednisone is probably a good option for you.
I definitely would get flare up if I drink milk. Garlic, beans, chickpeas, seeds, almonds would bother me. I feel okay if I eat bread, rice, eggs, chicken, pork, or beef. I can’t digest any of the green stuff (salads, vegetables). I feel that eating 5 to 6 very small meals a day would help – digestion is easier, and it keeps your energy level up. So, try that….
I go to the gym frequently and it seems to help. I do mostly Yoga, Zumba dancing, cycling, kickboxing, etc. Those classes seem to reduce the pain for me.
I am, like you, new to this forum and hopefully you will find it helpful 

 

[susanfrances]

Welcome! Glad you found the group- lots of good information and experience here- laughs, too.
Things work differently for everyone; same goes for side effects.... When my flares were out of hand, prednisone helped to quiet them down in the short term (usually a few weeks at a time) enough for longer term maintenance therapy to do it's thing-
Keep us posted! :welcome: