Newly Diagnosed- Struggling

[susher1]

Hi everyone! I'm so glad I found this forum. I'm 20 years old and I was diagnosed with Crohn's disease in February. I'd like to tell you a little about my journey so far so you all can get a better understanding of what I'm going through- because I know you can all relate!

So the beginning of January I started having severe but sporadic abdominal pain. It wasn't constant and that was my only symptom. I went to the doctor and had an ultrasound with no results. My angel of a physician ordered a CT scan and they found what looked like Crohn's. I was shocked. Crohn's doesn't run in my family- at all. I waited until the end of February to be accepted to be seen by the Vanderbilt University IBD clinic. Then, I had to wait until March 25th to even see them! Frustrating to say the least.. But I have an AMAZING doctor and she's a very well known Crohn's specialist. From January to March I really doubted my diagnosis. I was struggling everyday with pain but that's it. No vomiting, no diarrhea, just pain. Finally I was scheduled for a colonoscopy/ endoscopy a few weeks ago and they confirmed it was Crohn's. It was actually a lot worse than they initially thought. After waiting all that time, I'm yet again still waiting.. This time on treatment. I was offered Humira but I really don't want to give myself shots every other week... I know, it sounds pitiful but I'm afraid of needles. So my doctor suggested Remicade, which I'm fine with! However, my insurance company has decided they want me to try Humira first so now I'm waiting on an appeal to go through so I can HOPEFULLY start my Remicade infusions. This week has been especially hard- I've had so much pain. It actually feels like it's getting worse. I've been on prednisone in the mean time and I feel like it's not helping at all. So now, I have yet another CT scan on Friday to see what's going on.

I guess I'm just so frustrated and drained by this whole ordeal. I want to feel better again. I'm so afraid I'm going to miss out on things I want to do this summer because I can't seem to get better. I've tried eating better, it isn't working. I'm taking all the medicine I can until Remicade, it's not helping. The pain is so bad at times, I vomit. I'm only 20 and my body feels like it's giving out on me.

So that's me. I'm trying to stay positive but lately it's been so difficult. I'd love to hear from people who have gone through something similar. How did you manage your stress? Does eating better really help?

Thank you.

 

[ronroush7]

Welcome. I am sorry you are going through this. I hope that you can get on Remicade soon and things can calm down.. Diet does help some. Early on, I found out I, personally, couldn't do caffeine or dairy. Giving these up helped with symptoms.

 

[Grumbletum]

Hi Susher
And a big, warm welcome to the forum. I am so sorry to hear about your diagnosis. It is a lot to get your head around. I remember being relieved at first when I got my diagnosis cos at last I knew what was wrong, but then it kind of sinks in what you're up against. On the plus side, it sounds like you have really good doctors.
About the Remicade, I'm not from the US but I have heard of a programme called Remistart which might be worth looking into.
Re: eating, you'll find that there is no one diet for Crohn's as everyone reacts differently to a variety of foods. One thing you can do is start a food diary - noting down what you eat and what might be aggravating your symptoms, then eliminating that food to see if it helps or not. That way you can build a list of foods that are safe for you.
I hope you can get sorted out with the Remicade.

 

[eleanor_rigby]

I am going through the exact same thing - pain everyday that is not being helped by prednsiolone. I've been on azathioprine for 2 weeks so waiting for that to kick in and worrying when is this going to end? Am I stuck like this? I'm also sick of waiting while nothing works. I had a CT scan that was completely normal yet I am having regular symptoms of partial bowel obstructions (cramping pain above my belly button). I think we just need to hold onto hope that things will get better that we can't just stay like this!

 

[LTomes]

Wow your story is a lot like mine I was just diagnosed in sept 2015 via ct scan and it was a complete surprise. I did end up having a resection in November because mine went from bad to worse a lot of it due to waiting and honestly now that I think back I think I had been sick for a while but didn't know what was going on... Mine didn't stop with my resection apparently my body was flaring so bad that it pretty much went right back at it 3 weeks after my section.Right after my resection I got referred to a specialist because after my resection my crohns came right back. After being on imuran and Humira for about a month and half two months I had another colonoscopy Monday and I'm in remission. A little about this disease is it can be utter hell and your absolutely right I'm 28 and it felt like my body was just giving out I have never in my life been so sick. Before this I had never been in the hospital besides having my kids and I was literally in the hospital for one week a month in sept - January of this year. I will say in the bad part my advice would be To stick with liquids and soft liquids I also digested eggs and bananas very well. I am fine drinking coffee now but during my flare it would have made me throw up.. Avoid abything that makes your stomach do that loud gas sound. Dairy did that to me.. That's not normal. No corn, nuts, or anything with skins.. Throw everything out of the closet about diet when your in a flare it's all about easy and soft to digest foods because your intestine is swollen. Pastas( like bland noodles) cooked foods ( no raw foods) stuff that's easy to digest.

Good luck to you. This disease is all about ups and downs and it's normal. This forum really helped.

 

[crohnsnomore]

Oh how I can relate to your issue. KEEP READING, THIS WILL HELP YOU !!!!
I had resection surgery over 14 yrs ago. Sent home with major drugs. Felt pain still too! I had a strong conviction to "heal" myself! I searched online for a natural anything that reduced inflammation and boosted my immune. I found CATS CLAW! Its the ground up bark of a tree found in Peru and other rain forests. A scientist discovered it in the 1970's, saw that the people there were using it for all kinds of health issues for centuries! I haven't stopped taking this for over 14 yrs now. Within 2 weeks of my surgery back then, I weaned myself off of the prescription drugs (without my Dr. knowledge!!) and replaced them with 2-3000 mg of Cats Claw a day. Within 4 days I felt it WORKING! Cats Claw is the most powerful anti inflammatory I have found, it also regulates or boosts immune system. I dont EVER get colds or flu even when highly exposed to them.
I tell everyone I know about this herb. Sadly most just think its another gimmick!
I believe in the God that created this body of mine, I also believe that when he created these bodies, he put HIS OWN medicine on this earth to HEAL them. Why on earth wouldn't he? We surly weren't expected to have the means to spend thousands on Dr's and Tests and Surgeries & Prescriptions so that we could be healed. There is a GOD GIVEN natural product, Oil, Herb or plant for EVERY health issue this world conjures up!
Start thinking for YOURSELF! Crohns is INFLAMMATION of the Gut!! There are a TON of NATURAL anti inflammatorys! Cats Claw is just one and its worked more than I ever expected!
It is safe for all those who are NOT Pregnant or Nursing a baby!
Do your research people!
I have tried all types of brands but have stuck with the "Source Naturals" brand, its cheap, $12 for a bottle of 120 tablets, 1000mg each. Lasts me 4 MONTHS! If your having active Crohns symptoms, I suggest taking 3000 mg a day, no need to work up to it, just get it in your gut!!!
If you "trust" a prescription with all kinds of side effects that MIGHT reduce the inflammation in your gut why wouldn't you trust a God Given herb! He knows what he's doing people!! Dr's are in it for the money, God is in it for the LOVE!!
He wants you WELL!
Another thing! Quit "CLAIMING' this disease, don't even say you have it, your only giving it power when you do.
Instead, REBUKE it like your life depends on it. In the name of Jesus!!!
Get online (drugs stores don't carry it) and buy yourself some CATS CLAW today!! One last thing, anyone who has had a resection surgery, WILL have diarrhea!
I went 2 yrs before a Dr finally told me about Cholestyramine or Questran powder. Its mixed with water, taken once daily to ELIMINATE diarrhea. And YES IT DOES JUST THAT.
I had a FOOT of bowel taken out and anyone who looses bowel needs this simply because your liver is still producing the same amount of BILE. This bile is what breaks down your food. Your intestine are getting TOO MUCH bile for the smaller bowel now. Cholestyramine is a known cholesterol med, it works in the liver and reduces bile! It is safe to take for the rest of your life, its been on the market for years! It is the ONLY prescription drug I take. Comes in 4 gram powder packets OR a tub of powder that you can measure out yourself. I don't need a full packet so one last me 2 days. It has been a true Blessing, without it I don't function well in public at all!! lol God Bless to all!!

 

[smt]

Oh how I can relate to your issue. KEEP READING, THIS WILL HELP YOU !!!!
I had resection surgery over 14 yrs ago. Sent home with major drugs. Felt pain still too! I had a strong conviction to "heal" myself! I searched online for a natural anything that reduced inflammation and boosted my immune. I found CATS CLAW! Its the ground up bark of a tree found in Peru and other rain forests. A scientist discovered it in the 1970's, saw that the people there were using it for all kinds of health issues for centuries! I haven't stopped taking this for over 14 yrs now. Within 2 weeks of my surgery back then, I weaned myself off of the prescription drugs (without my Dr. knowledge!!) and replaced them with 2-3000 mg of Cats Claw a day. Within 4 days I felt it WORKING! Cats Claw is the most powerful anti inflammatory I have found, it also regulates or boosts immune system. I dont EVER get colds or flu even when highly exposed to them.
I tell everyone I know about this herb. Sadly most just think its another gimmick! This twisted society and posh pharmaceuticals have people believing so many lies!
I believe in the God that created this body of mine, I also believe that when he created these bodies, he put HIS OWN medicine on this earth to HEAL them. Why on earth wouldn't he? We surly weren't expected to have the means to spend thousands on Dr's and Tests and Surgeries & Prescriptions so that we could be healed. People wake up! These DON'T HEAL US, they only mask symptoms and make others RICH!!
There is a GOD GIVEN natural product, Oil, Herb or plant for EVERY health issue this world conjures up!
Quit relying on the world and its Dr's to heal you! This is your first mistake!!
Secondly, Start thinking for YOURSELF! Crohns is INFLAMMATION of the Gut!! There are a TON of NATURAL anti inflammatorys! Cats Claw is just one and its worked more than I ever expected!
It is safe for all those who are NOT Pregnant or Nursing a baby!
Do your research people!
I have tried all types of brands but have stuck with the "Source Naturals" brand, its cheap, $12 for a bottle of 120 tablets, 1000mg each. Lasts me 4 MONTHS! If your having active Crohns symptoms, I suggest taking 3000 mg a day, no need to work up to it, just get it in your gut!!!
If you "trust" a nasty prescription with all kinds of side effects that MIGHT reduce the inflammation in your gut why wouldn't you trust a God Given herb! He knows what he's doing people!! Dr's are in it for the money, God is in it for the LOVE!!
He wants you WELL!
Another thing! Quit "CLAIMING' this disease, don't even say you have it, your only giving it power when you do.
Instead, REBUKE it like your life depends on it. In the name of Jesus!!!
Get online (drugs stores don't carry it) and buy yourself some CATS CLAW today!! Take it religiously and get off the pharmaceuticals, their killing you!
One last thing, anyone who has had a resection surgery, WILL have diarrhea!
I went 2 yrs before a Dr finally told me about Cholestyramine or Questran powder. Its mixed with water, taken once daily to ELIMINATE diarrhea. And YES IT DOES JUST THAT.
I had a FOOT of bowel taken out and anyone who looses bowel needs this simply because your liver is still producing the same amount of BILE. This bile is what breaks down your food. Your intestine are getting TOO MUCH bile for the smaller bowel now. Cholestyramine is a known cholesterol med, it works in the liver and reduces bile! It is safe to take for the rest of your life, its been on the market for years! It is the ONLY prescription drug I take. Comes in 4 gram powder packets OR a tub of powder that you can measure out yourself. I don't need a full packet so one last me 2 days. It has been a true Blessing, without it I don't function well in public at all!! lol God Bless to all!!

I do not know why anyone else is not doing it, but when they are not, I would have to protest against this pseudo-scientific nonsense. I believe in peer-reviewed scientific research, and as yet, whatever this person is saying has not been validated by that. Ergo, please stop.

 

[smt]

smt, you stated," I believe in peer-reviewed scientific research."
Foolish one, do you not read these posts? 90 % speak of NO positive results, most stating the drugs they have taken result in No cure and No relief from symptoms from this so called "scientific research!"
I am posting MY OWN results from MY OWN research in hopes that someone, anyone will simply TRY what CURED me. I am a healthy viable able to work past Crohns patient who simply healed myself with a herb (Cats Claw) that "science" forbids to "research" most likely because IT is EXTREMELY POWERFUL!
Those who rely solely on medicine and Doctors will receive their results and when it comes to Crohns, they have very little to offer!
I pray all who read this and my previous threads at least give this "natural" herb a try! What on earth are you waiting for!!!

Please be aware that calling me names would not take you anywhere. It seems you are a deranged person, and hence any further argument with you is meaningless.

 

[Lisa]

A temporary ban had been imposed, non supportive and argumentative. I am awaiting a response to multiple message at this time from this poster.