Just diagnosed yesterday and scared

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smallfry0517

Joined
Jan 14, 2014
Messages
5
Hi everyone,
I had a colonoscopy and endoscopy yesterday after almost 3 months of agony (persistent nausea, constipation, night sweats, intermittent fevers, abdominal pain after eating, feeling blocked, fatigue, dizzy spells, ribbon stools) and the Dr. said he saw apthous erosions in the terminal ileum and inflammation and that he thinks it is probably Crohns. Now I am home waiting to hear the results of the biopsies still having all the same symptoms but now scared. In the past 3 months, I had a CT scan in the ER on a night of particularly bad pain where they tried to tell me it was IBS and some constipation, an MRI of my brain (showed nonspecific findings of the white matter of the brain), ultrasounds, blood tests for various things, etc. I haven't met with the Doctor yet to figure out a treatment plan and have no idea what they will do, how bad it is, do I have strictures or narrowing. I am overwhelmed and wondering how this could have come on so suddenly--I ran my first 1/2 marathon October 20th and felt great, and mid-November started feeling bad one day and have never improved. Is this how my life is going to be? I'm 41, a mother of a 5 and 8 year old, and married 10 1/2 years to a great husband. I had everything I could possibly have wanted, and was in the top physical condition of my life, and now I cannot run at all, can't enjoy a meal with my family, can't plan a night out with friends…. Is there anything I can do to reverse this or slow its progression or make it better, through diet or anything natural? I'm trying to maintain as much normalcy as possible but I knew nothing about Crohn's till yesterday and now all I know I got off the internet!
 
Smallfry-

I'm sorry to hear about your recent diagnosis. The internet can be a scary place to look up information as there's lots out there and no way to know what applies to you. In many ways, this may be a good thing as hopefully you can get on the right treatment and start feeling like yourself.

Do you have an appointment with your GI?
 
Thanks wondering for your response. I called to make an appointment with the GI today, and was told that the nurse would call me to go over the biopsy results and treatment plan next week or whenever the results come back, and that the doctor would decide if he needed to see me or not. Nothing against nurses, but as someone newly diagnosed who only met the GI doctor in the procedure room for the first time, I would really like an opportunity to talk to the doctor about everything! Feeling like myself is exactly my goal.
 
Don't stop trying to you get into see a specialist gastro... And hope that specialist is a good one...
I have been waiting since last April for any results...
I got some last year in late December to say it was Crohn's and now the specialist is saying... Crohn's??? His not saying it is but his not saying it isn't either... I have to a have further tests done to confirm either way and then we go from there...
Don't get me wrong I would love for it not to be Crohn's, but as I am still in pain... I want to know what's going on...
This specialist wants to be 100% correct before starting an aggressive treatment such as the one for Crohn's...
So another 2 week wait...
Good luck, and try not to read to much up about it as it can be confusing and everyone is different... Different symptoms...etc


Sent from my littlefishes
 
There will be ALOT of people telling you what to do/take

you are 41 and Fit my advice keep staying FIT, it has helped me more than any drug ever did. Be aware of the foods you eat this way when you do feel awful you can zero in on what food may of caused it.

Do not be scared Do not throw a pity party, your life can be as wonderful as it has been the last 41 years the difference is you need to pay closer attention to what you eat/drink/take

Research the drugs your Doc suggest's, knowledge is key.
 
Your life isn't,t over its early days in your treatment programme it does get better you can help it along by avoiding trigger foods(keep a diary)don,t smoke,be cautious with alcohol,common theme on here exercise helps!be wary of dr google no news is good news,warning labels with your meds!!cover your backside exercise!just remember you,ll get lots of bloods done it,ll pick up anything going astray.checkout this forum it's useful.natural,homeopathic,airy fairy cures don,t work listen to your doctors be patient it gets better hopefully sooner rather than later.all the best,good luck
 
We all know how you feel. When you first get the dx, it's pretty scary, but stress can make things worse, so try to stay calm. Being a certified nutrition specialist, I can say that you will probably have to change your diet.When your disease was triggered, so to ( probably) are some food intolerances. That means there may be some things that you are producing IgA antibodies to, which in turn brings on inflammation. Once you talk to your doc, then get pro active and figure out what those foods are. Google Enterolab . It's a lab you can send a stool sample to that will give you some food answers. If not, an elimination diet will do the same. Gluten and dairy are the most suspect. Raw fruits and veggies are also hard on an inflamed gut.
Take a deep breath and take one day at a time.
 
Wow jerzey... Your extremely positive... Do you have any tips?
I ask, because I'm normally a very I can person, there's always way...
I have my dreams of study to get a degree and traveling...
But since the diagnosis I wonder how much of that is going to happen... So please any tips...?


Sent from my littlefishes
 
Faith and research

1: Its a mindset...I refuse to allow a disease to rule my life, it's not what defines me, it's a roadblock I break through daily and happily laugh at it won't stop me from living my life.

2: ( I won't go on a faith rant )

3: I research and question everything, if comes from a website, doctor or friend. I want to know the why, how and what.
 
I agree with jersey it's a big bump in the road that's all!it doesn't,t define anyone as a person it's a mindless dumb disease like many others.it will eventually be cured/managed better in the future but meantime we all suck it up and carry on even through the black days and knowledge is power but be wary of dr google.
 
Thank you, jerzey and axelfl3333.
I have normally been a person with that mindset, but it's just been hard to get my head around this. With all the unknowns still... It just doesn't want to leave.


Sent from my littlefishes
 
Hi Smallfry,

I am really sorry to hear about your recent diagnosis for Crohns.

I have also recently been diagnosed with Crohns, i'm 43 years old and have been married for nearly 20 years with an 11 year old son.

I too wonder how life will be now, but am determined to do all I can for the best. I had already discovered I was dairy intolerant a few months back so have cut this right down which helps alot. I'm trying also to eat foods that my body can easily tolerate, things like salmon, rice, mashed potato and eggs seem to be working quite well for me at the moment. I guess you will need to experiment to see which foods work best for you.

Once of the worst things I have found is the brain 'fog' and fatigue, it frustrates me as my mind was previously very sharp, now I find I have to work much harder at my concentration and focus especially at work.

I think the early stages of having Crohns are quite difficult both mentally and physically in coming to terms with it, I am sure that once they can get you on the right medication things will start moving in the right direction for you.

All the best and keep us posted on how you are getting on.
 
Homemade soup for your veggie fix is really good well cooked and or blended,fish and chicken are generally.your average junk,oily over processed is bad,treat alcohol with caution.invest in a George foreman if your have steak,sausage,bacon that kinda stuff but triggers can be different for everyone a slice of melon marked my soul early on but grapefruit and grapes are fine for me.salad stuff be cautious with although my kingdom for coleslaw.
The thing to remember is the meds work eventually but there not like flipping a switch it takes time and patience it's frustrating but things will get better.all the best good luck
 
"Faith and research

1: Its a mindset...I refuse to allow a disease to rule my life, it's not what defines me, it's a roadblock I break through daily and happily laugh at it won't stop me from living my life.

2: ( I won't go on a faith rant )

3: I research and question everything, if comes from a website, doctor or friend. I want to know the why, how and what."

I second that great advice from Jerzey.

Been dealing with crohn's myself almost 45 years you'll have your up's and downs but stay positive things will work out..
 
Started Pentasa Friday and Entocort yesterday. Started gluten free diet on Friday and every anti-inflammatory natural remedy known to man. I am strong in my faith and have been keeping up with my exercise. My husband and my kids are the best and I am lucky for that. Still…I am going to an infectious disease doctor tomorrow to see if exposure to salmonella last April could be the cause of this an not Crohn's. Maybe a round of Cipro would cure this whole mess. RIGHT! lol I know… denial...
 
be prepared to be told diet doesn't matter by doctors.I was diagnosed this past November,Thanksgiving week,and had a resection in my duodenum due to strictures.I had emergency surgery.I can relate to your feeling of being blindsided.I had been experiencing increasing abdominal pain over a few weeks,getting sick at 2:30 a.m..I would feel better the next day after these bouts,comparatively so.I was at work one sunday and thought my guts were gonna rip out of my abdomen and went to the ER.I had an MRI,x-rays,ultra sound,etc..I had an 8" section of small intestine that was close to completely blocked.The tests came back and was diagnosed with crohn's the day after Thanksgiving.Kinda ironic.I went gluten free,no alcohol and really adhered to a strict diet.My surgeon says to me at my post-op check up after I tell him about my lifestyle changes,"eat what you want,don't deny yourself,diet doesn't matter.You'll need more surgery in the future anyway".Wow! I still follow my diet and approach this as naturopathically as possible no matter what Dr.'s say to the contrary.It makes me feel good that I'm doing something positive to fight crohn's and that is good medicine to me.It helps me stay positive and fight through the low times we all go through.Welcome!...sorry for the rant.I just find it hard to fathom that a healthy diet does not matter in fighting crohn's. :yrolleyes:
 
dave13 said:
be prepared to be told diet doesn't matter by doctors.I was diagnosed this past November,Thanksgiving week,and had a resection in my duodenum due to strictures.I had emergency surgery.I can relate to your feeling of being blindsided.I had been experiencing increasing abdominal pain over a few weeks,getting sick at 2:30 a.m..I would feel better the next day after these bouts,comparatively so.I was at work one sunday and thought my guts were gonna rip out of my abdomen and went to the ER.I had an MRI,x-rays,ultra sound,etc..I had an 8" section of small intestine that was close to completely blocked.The tests came back and was diagnosed with crohn's the day after Thanksgiving.Kinda ironic.I went gluten free,no alcohol and really adhered to a strict diet.My surgeon says to me at my post-op check up after I tell him about my lifestyle changes,"eat what you want,don't deny yourself,diet doesn't matter.You'll need more surgery in the future anyway".Wow! I still follow my diet and approach this as naturopathically as possible no matter what Dr.'s say to the contrary.It makes me feel good that I'm doing something positive to fight crohn's and that is good medicine to me.It helps me stay positive and fight through the low times we all go through.Welcome!...sorry for the rant.I just find it hard to fathom that a healthy diet does not matter in fighting crohn's. :yrolleyes:
Click to expand...

HI dave you were one of the first guys to welcome me to the forum, I followed all advice about diet. My consultant also told me that lifestyle changes wouldn't make a difference, I say Bull___t to that. I have totally changed my eating habits, already have less cramping and more energy. It's def down to having a balanced diet :ghug:
 
Hi Smallfry,
I feel your pain I'm 35 and was diagnosed before christmas (19 december), like you I had colonoscopy and endoscopy,
It was confirmed crohns and also I have duodenal ulceration.
I was miserable after procedures as it caused flare to esculate.

I was prescribed medication. pentasa, omeprazole, iron supplement then needed buscopan for the cramps.
I took sound advice from the forum and completely overhauled my diet, No coffee just herbal teas (they grow on you :) and water, I changed how I cook alot of dishes to make them healthier. I avoid fatty foods (just not worth the pain) Fruit doesn't suit me anymore. I've started on supplements osteocare (Vitamin D, Calcium, Magnesium, zinc)
I agree with Dave13 with changing lifestyle makes you feel good and putting up a pretty positive fight.
Since I've made these changes, I hardly need buscopan and my energy levels are through the roof. Right now I'm feeling good. Hope this helps :) Best of luck
 
I,ve got to disagree with that doctor like many people I,ve found minor or not so minor dietary changes have helped and let's be honest we all know over processed greasy,oily food isn't,t good for anyone especially us crohnies.
 
We know we have a disease that has no cure,no cure yet that is.We can be affected from our mouth to our anus and all points between.A good diet has to help,especially in the long run.I know my lifestyle changes won't rid me of crohn's.I feel the cumulative affect of eating crappy food on top of having crohn's can't be good.We all are affected by crohn's differently,many similarities,but differently.If certain foods can be a trigger to some and not others than I feel diet may help some and perhaps not others.It's all trial and error.Even if we don't agree on how we move forward with crohn's we can still support each other along the way.I know I'm a newbie and have a lot to learn.I also know I tend to get on a soapbox and rant so I'll stop for now.:lol2: :ghug:
 
Hi everyone!
I'm new to this forum, but was dx in 1997.
My advise to you would be to keep a food diary for about 2 weeks to figure out which foods are your triggers. Some foods may be immediately painful, while others may take a couple hours to effect you. Also, stay away from processed foods, they're typically loaded with stuff that irritate crohn's. Read the ingredients on the foods your choosing, that will save you more than anything else, that is also fun to get your kids into.

By all means, stay active. There will be plenty of times when you can't, however, once you have your personal list of trigger foods, you should be able to stay on track for the most part. Get your family in on your diet, the last thing they want is to see you sick.

Always try to keep a positive attitude, since 90% of serotonin is made in your large intestine, this isn't always easy. Those are the days that I personally take more St Johns Wort :)

There are going to be a lot of changes in your life, and a new normal is what you're looking at, not the end of your life. Stay strong, it is possible to be a healthy sick person. As soon as you feel up to (and don't push it), start exercising again.

There are lots of natural things that you can take. I personally drink hot tea with 3 different types at once. The brand I drink is Celestial, the types are honey vanilla chamomile, tension tamer and bengal spice. I put 2 of each into a 24 oz thermal mug and drink it when my tummy starts to hurt and it does wonders for me. All the ingredients in each tea are anti inflammatory and chamomile is a sedative so it relaxes the intestines while helping to take down some inflammation at the same time

Hope this helps :)
 
I also drink chamomile every morning :)
No processed food is a good law to live by. I didn't even try GF bread until I had a year of healing under my belt. I do have to recommend that gluten and dairy be eliminated right away. It takes almost 120 days for all the half life gluten antibodies to be gone from your body. Fiber ( for now) will also prevent/slow healing. it's too harsh for an inflamed gut.
good luck
Leah
 
When i was first diagnosed at the Mayo 16 years ago, they gave me fairly strict diets. It didnt help. Now they dont recommend special diets, as they seem to have come to the conclusion that no specific diet seems to help in the long term, and people are just so different in what they can tolerate. For instance i seem to handle red meat and dairy just fine, but give me any raw veges and i can be really hurting. The important thing is to learn your own triggers, and to make sure one way or the other you are getting a full, balanced diet.
 
I agree rockin on.It is important to have a full,balanced diet and know your triggers.I've been cautiously trying foods I would like in my diet.I never ate much processed foods before crohn's.I suppose my biggest diet change is being gluten free,omitting anything fried and no alcohol.I am fortunate to be able to tolerate roughage and eat fresh veg.and fruits.I'm thankful I can eat potatoes with no problem as well as veg.in the brassica family.Cooked tomatoes and peppers bother me.I also eat a lot of fermented foods.I eat organic as much as possible.I work in a health food store and get a discount,the discount really helps.I cook pretty much everything I eat.I will stick to my opinion that a healthy diet is good for you.We don't absorb everything from our food so we need supplements. I know crohn's could slam me hard tomorrow,no matter my diet.Eating well makes me feel good.
 

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