Just diagnosed...in shock and scared. Please help with questions.

[KatyBuckeye]

Hello- I just received a Crohn's diagnosis. I am honestly in shock and I'm having a hard time believing it. I'm 27 years old. About a month ago, I started having diarrhea- at first several times per day, and then decreasing in frequency as I tried an elimination diet and cut all gluten out of my diet. This was the first time that I had ever had diarrhea, so it was very unusual for me. Prior to the diarrhea, I had some GI issues- GERD, bad gas, some bloating- for a few years. But nothing serious enough that would lead anyone to question Crohn's. My PCP was initially thinking Celiac disease when I first saw her about the diarrhea (thus, I thought to try the gluten free diet, which has helped some). Last week, I had the colonoscopy. The GI doc says that she did not visually see any inflammation. There was one polyp that she noticed and removed, and now tells me that it was an inflammatory polyp. However, the biopsy report indicated inflammatory bowel disease with signs that are strongly consistent with Crohn's rather than ulcerative colitis. I'm a bit confused on the fine points of the biopsy reports and I will try to get a copy soon. From what I understand, it sounds like they aren't 100% sure, but certain enough to start me on treatment for Crohn's. The GI doc is recommending that I get the Prometheus IBD sig diagnostic that may give a better indication of the Crohn's prognosis. At this point, I'm not sure if I want to proceed with that or attempt to get a second opinion. Any input or recommendations? Does anyone get a biopsy that gives 100% certainty of diagnosis?

The doc wants to start me on Lialda. I am scared of starting the medication because I don't want to be on meds for the rest of my life. Once starting the medication, is it possible to ever stop? Or will stopping lead to a flare?

How do I know if I'm in active Crohn's? Since starting the gluten free diet, I do feel like symptoms have decreased and I'm having more "loose" stool rather than straight diarrhea. Yesterday, I had an almost normal bowel movement. Today, I think the stress is affecting me because I've gone a few more times than in the past few days. But overall, the frequency has decreased. Has anyone ever gone into remission without medication?

Thank you for taking the time to read this. This is such a shock to me and I'm so scared about having to live with this disease for the rest of my life. I am considering getting a second opinion, but it will take a lot of time and I'm not sure what my insurance will cover/won't cover regarding retesting.

 

[Absentminded]

Hey,

I don't have any real advice, but didn't want to read and run.

You're not alone with feeling shocked by your diagnosis, it's always a big thing to take in.
Hopefully now you do have one, you can start getting better.

Someone else should be along soon to give some advice!

 

[Emily]

Hi and welcome!
I'm sorry but I was diagnosed very young and don't remember the process and the tests too well so I don't have much to offer there .

To answer some of your other questions, unfortunately medication is necessary with IBD, if you ignore it and don't take anything, lots of diseased tissue may build up and you could end up with a stricture or blockage requiring surgery. (I did this for about 10 years, and it inevitably came back worse then ever before) I don't recommend doing that!
Lialda is a good mild drug to start with, and you can always try other drugs if it doesn't work for you. Starting Lialda doesn't mean Lialda for life so don't worry!

And for me, I know I'm in a flare when I have actual stomach pain. This is different for everyone though. Everyone seems to have different signals but over time you will learn when you're feeling "Crohnsy" vs. when you just ate too much/ate something bad. They feel different!

Anyway, I'm glad your BMs are getting a little better and that you will be getting more definitive answers soon. Remember we're all here for you, let us know how the Lialda works out and how you're doing!

 

[Snoflayk505]

Im so sorry to hear about your diagnosis! Welcome to the club though, we are all here for you I just wanted to share with you that there have been many people, incuding me , who have been able to manage their Crohn's medication free. Its done simply by taking all of the bacteria breeding foods out of your diet. These diets are called SCD, Paleo, GAPS, etc.. I started the SCD diet 2 months ago. I was in full flare and in 8 days I was able to eat again. i am now symptom free and on no meds They say it doesnt work for everyone ....i guess (havent found one yet), but I pray that you are one of the lucky ones like me that it works for Good luck to you and stay strong.
This site will tell you everything you need to know about the SCD diet. there are SO many blogs with delicious recipes. (these diets are carb, grain, sugar, and dairy free)
Food List
http://www.breakingtheviciouscycle.info/legal/legal_illegal_a-c.htm

Alos read the beginners section and intro diet.
Let me know if you are interested in any of my favorite recipe blogs

 

[Keepingfaith]

So sorry you are in the "Crohnie Club" but this is a great place for support & advice. :ghug: Unfortunately, like others have mentioned, beeing on some type of medication is neccesary with this disease. Often times, when people refuse to take their medication or think they are feeling good enough to discontinue it, they end up in the hospital having a major, unplanned, surgery. Lialda is a 'mild' medication and doesn't have too many common side effects other than upset stomach, nausea, diarrhea.

Everyone reacts differently to different foods. A lot of people on the forum have a gluten sensitivity in addition to their Crohn's so they also find relief with a GF diet. I went un DX for a veyr long time and went into a spontaneous 'remission' that lasted a few months. Then I ended up in the hospital with a feeding tube because I lost 85 pounds in less than a month and was in extreme pain. So, it is possible, but very VERY unlikely.

If your biopsies showed granulomas, then you definitively have Crohn's. Some people with crohn's don't have the granulomas show up on biopsies for a while after DX, if at all. If bacteria, NSAID use and all the other things that can mimic IBD have been ruled out, then honey, you probably have Crohn's. We all go through the denile phase-multiple times. It is part of this condition. You will learn to accept it, then you will get angry, then depressed, then deny the disease etc. etc. The truth of the matter is, we have Crohn's.

As far as knowing if the disease is active, you'll know. Trust me. You may have some doubt at first but usually your senses will tell you. I have never been in a true remission but I can tell when my flare is getting worse by: Debilitating joint pain, fatigue, weight loss, looser stools, bloody bowel movements, nausea, bloating, PAIN, rectum swelling, mouth ulcers and vomitting. It all depends on WHERE your disease is located and whether it is mild, moderate or severe.

This disease is NOT something to be taken lightly. It is serious but with the right team of doctors and support, it will be tolerable. So many people with an IBD lead a great life! :dance: I hear remission is absolutely amazing and the Crohnies in remission often forget they have this disease! Take care of yourself and if you have ANY questions, ask! :hug:

 

[Jennifer]

I'm never against a second opinion if you need at least the peace of mind but one thing you might want to do if you do like your current GI is ask them to run some more tests. Scopes don't show everything, the biopsies can show a lot but visually you wont always see anything especially if the inflammation is slight or on the outer region of the intestine. There are a lot of tests that would show inflammation, scar tissue, ulcers etc such as a MRI, CT scan, barium swallow (shows small bowel) or enema (shows large bowel) with x-ray, blood work (CRP), ultrasound, pill cam and probably something else I forgot. I'd suggest more testing before you start the meds (its totally up to you though, as others said its a mild drug) if they really scare you and if you feel you need a more concrete diagnosis. Its your choice of course. I've never taken Lialda but I have taken something similar, Asacol and it helps by preventing further inflammation.

As far as medication goes, no one wants to be on medication for the rest of their life but unfortunately for some they have to. If you feel that your symptoms are under control and that the inflammation is under control then you can certainly try (try is a key word cause with many people they wind up flaring again) going med free. How long that will last depends on the person. Personally I take medication so I can stay in remission.

How do you know if its active? Your symptoms and inflammation markers will tell you and your doctor. If you have little to no inflammation and minor to no symptoms then chances are you're in remission.

As far as people going into remission without medication, that depends on how bad the disease is so it is different for each person. I've never gone into remission or stayed in remission without medication but that's me (and most people). Hopefully you're different.

Good luck and keep us posted. Welcome to the forum!

 

[PattyLynn]

Hey Katy, I am from Canada and I have never heard of the drug Lialda so I can't be of any help there - sorry. Emily is right though, drugs are inevitable. You may need to try a variety of prescriptions before finding one that works for you. You may want to stay on the gluten free diet as any diet that cuts down on gas and bloating will surely help.

I am currently in the midst of a flare up (active Crohn's) and this was detected through a biopsy. But I was so sure that it wasn't Crohn's this time because in the past I was doubled over in pain and, at the time, this flare up wasn't nearly that bad (it has since gotten considerably worse :frown Everyone is different.

Keep your chin up - I know it is scary but it will get easier and you will be able to handle it. I was diagnosed over 20 years ago and although it hasn`t always been smooth sailing, I am able to live a pretty normal life.

 

[KatyBuckeye]

Thank you for all of the replies so far. It is very helpful. I feel very much alone right now and I appreciate the support. My doctor has scheduled a CT scan for me and is doing additional bloodwork. Initial blood work and stool tests by my PCP did not show any inflammatory indicators. I guess part of my difficulty in believing the diagnosis is that the doctor said that the biopsy report was a bit confusing. I think I need to get my hands on it and read it for myself. My symptoms do not seem nearly as severe as other stories that I have read and I still don't understand if I would be considered in remission or not. I'm not having abdominal pain and never have had pain, just the diarrhea, which has been decreasing (besides yesterday when it occured 3 times instead of once). The stool is still not fully formed, but more in ribbons (sorry, I know that's probably TMI). The doc said that the biopsy shows the Crohn's mostly in the ilieus.

Has anyone ever had the Prometheus IBD sig diagnostic done?

 

[Keepingfaith]

The Prometheus test is not 100% accurate. I had it done and it said I did not have Crohn's or any genetic component of Crohn's. Which is funny because my mother has Crohn's and I have moderate-severe fistulizing Crohn's affecting my small & large bowel as well as upper Gi tract and the biopsies to prove it.

 

[xtine]

I am in the same situation!! I really wasn't expecting a CD diagnosis and am still in shock. I go back to my GI next week- hopefully he can go thru the biopsy with me because it didn't seem 100% either. I have filled my meds, stared at them and even smelled them-- I can't bring myself to take them yet!! I dunno if I sense it is something else or if I am in total denial-- I am so stressed and getting depressed over this and some symptoms have worsened.

So no advice but if you want to talk I am here and going thru this too!

Chrissy

 

[maria]

Don't stress I know easier said than done but at least you have an idea of what could be wrong.. Always get 2nd opinions if needed as many as it takes to have a clear answer. you will know if your having a flair it sucks but if you go into remission you may not have a flair for yrs. I've had biopsy's and they still couldn't tell what I had either crohn's or uc.. They even took 7 inches of my colon and sent it to have it tested in the lab and still don't know.. i'm trying the gluten free diet and it has made a difference But I do want to say what makes it worse is stress.. So just keep yourself busy with things you love to do...

 

[ljb16]

I was just diagnosed in the last 6months. I have had an emotionally tough time and actually began counseling and antidepressants to help with the anxiety and anger and overwhelming sadness. I am glad I have started both, they are helping. Some days I am great at dealing with it and others I am overwhelmed completely. I am learning to accept all emotions and allow them to be. Fighting them adds even more stress for the disease to thrive on! Hang in there!

 

[KatyBuckeye]

Thank you again for all of the replies. I am so glad that I found this forum. I've been feeling better and taking some suggestions that I've received here. I'm getting past the denial stage a bit. I've been seeking counseling and that is helping a bit. I've also started on the SCD diet. It's too early for results, but at least I'm feeling more in control. I've researched the diet quite a bit and I'm convinced that it is going to help. Thanks for all of the support!

 

[Stacey]

Hi Katy,
When i found out 9yrs ago that i had crohns i didnt believe them, thought must be wrong i dont really have any symptoms.. They prescribed me Pentasa which i never took, because i was in denial and thought there wasnt any point taking this drug when i am fine.
So now 9 yrs later my Crohns is severely active which i still cant see how.. get pains but bearable..but from the photos shown and them explaining what will happen if i dont take meds gave me a wake up call.
I am now prescribed with Azathioprine which i start in 2 days... which seems much worse off with side effects... And im with you not wanting to pop pills everyday for the rest of my life.. like is that for real?? do we really have too?? So After 9 yrs im still trying to understand this disease and im glad i found this site.. so if anyone ones to add as a friend or chat or help me understand it.. I know everyone is different and wouldnt even know what most of the meds are..
So guess we both have great support here.

 

[PattyLynn]

Hi Stacey,
I've been on Azathioprine for about 10 years now and have never had any bad side effects. Your doctor will probably want you to get a blood test done ever 4 weeks or so just to monitor the liver because that is where Azathioprine can do some damage but like I said, 10 years and no side effects. As far as having to stay on meds for the rest of your life well, everyone is different (you'll hear that a lot on this forum!) I have gone through long periods (2 years) where my Crohn's has been in remission and I feel great but I choose not to stop taking the meds because that's what might be keeping the disease at bay. I am afraid that if I stop taking them, I will have a flare. And, when I do have a flare up (currently) I don't think "Oh, the drugs stopped working" instead, I go to my GI to discuss what other meds I can take!! I am not afraid of being on meds for the rest of my life if they help me to live the rest of my life. Know what I'm saying? Anyway, that is just my perspective. I know there are lots of people with Crohn's who are able to stop their meds no problem and only go back on them if/when they have a flare up. Hopefully you will be in that category. But one little bit of advice...if you need them, take them!

 

[Kip1]

Hi
Welcome to the forum. It can be a shock to learn you have a chronic illness but joining the forum & maybe doing a little research will help you come to terms with the disease & all that can come with it.
Also some people can achieve a full state of remission for many years when they find a diet & or meds that help so it doesn't have to be something that rules our lives although I know a flare can turn the world upside down when it happens.
At the end of the day its best to ask lots of questions & make sure you find the path that's right for you as we are all so different & what suits one person may not be the same as what helps another.
Keep in touch & let us know how you are getting along & ask for advice when needed, even if it seems like something trivial. I find it the forum has really helped me with my Crohns journey.

 

[Kip1]

teedphaF
was the message to pm meant for me.
If so I do not wish to discuss anything. I speak from my experience of only 9 months of crohns but symptoms for years & my mums 41 years of having crohns. Also many family members with UC & bowel issues.
I only wish to offer support to KatyBuckeye.

 

[Stacey]

Thanks Pattylynn,
Make me feel alot more reasurred. I have to have blood tests every week for the first 3 months then slowly goes longer apart. I hope i am one of the lucky ones too, but guess i just have to underdstand its apart of my everyday life now... When i read that people have flare ups, it seems really bad.. like what are peoples symptoms when they do.. i dont know if i ever have as i can handle the symptoms i have and my bowel is not looking flash at the moment. Im really hope that being here talking to people will make me understand that taking medication is really important as i dont think it has really sunk in. I dont handle swallowing pills all that well, never have. Dont even take pain killers when im in pain because i have to swallow them!! Man im a worry!! hahaha

 

[crazycanuck]

I think everybody is shocked when they hear the have a chronic disease that has no cure. It's scary of course and the idea of meds for life is off putting to say the least but after 5 years if you asked me to go back in time like this never happened I'd probably say no.

My life with Crohn's has made me a better person. I don't take things for granted so often, I volunteer some now, I'm more understanding of others and I've developed confidence I didn't have before this. You'll learn things about yourself both good and bad through this and for that reason alone dare I say Crohn's may be the best thing to happen to me.

It's scary now and some people have a lot rougher roads than others but I really believe remission is possible for everybody. It's just a matter of how you get there.

Best of luck with everything, both of you, and welcome to the forums.