Ok whats everyone's biggest fears with this disease

I don't know why but I just wanna know my biggest fears which really don't have to do a lot with Crohn's in general but it's any kind of cancer diagnoses that truly terrifies me!! And my next big fear is this disease running my quality of life and not being to provide for my family like a man should the surgies and possible poop bag dosent bother me as long as I can still be here for them and provide for them. So basically anything that would take me away from my family to early or anything that would basically disable me from being able to be there for them :-( 11yrs later and I still battle irrational fears everyday even though I'm blessed beyond my wildest dreams how sad :-(

Fear, worry and anxiety will only lead someone down the path of further illness. I wouldn't worry about it. Enjoy the now

Amen I need to delet this post I don't like it

Your post was honest and it helps to vent sometimes

Totally agree with smartjweir. You're here for a reason. Blow steam all you need here, we all understand

I had to go there when my son was first diagnosed. I don't know why but it was part of the process for me. I had to really come to terms with all the 'what ifs' before I could move forward. My husband was very different, he doesn't do 'what ifs'.

I think the important thing is not to stay there. You have to be able to put those thoughts away and carry on. The truth is the scariest thing would be to waste your life worrying about things that may never happen. But, I think it can be good to talk about it. It helped me, but everyone is different.

(((((Hugs))))))

Thanks guys I let my fears get the best of me a lot

^^^ Totally agree with you Johnnysmom. I have to do all the what if and then I would... so I can move forward

I think all of us have moments where fear steals our present joy. It's just being human. I hate fear yet I find myself worrying. I wish I was more Type B personality, chill and relaxed, roll with the punches. For me, flaring with colitis is scary. I want my food to nurture my body like normal folks. I fear new medicine and if/when will it fully work. I just want what many take for granted...good health. I want to be a happy mommy and wife. Here's to less fear and feeling well and peaceful.

Jison, if you want the thread deleted I can do that for you. However, I don't see any need. Yes, it's best not to focus on our fears - but that doesn't make them go away, and talking about it can help us to feel better. Personally, I'm most concerned right now about developing additional conditions on top of the Crohn's.

No if everyone's ok with it I just don't want anyone to hae to stew on the negative but venting on here helps give the ones closes to me a break and I thank you guys so much for being supportive and yes having to battle another dosease on top of this would be awful!!! Most of the time I'm pretty up beat about everything but with these new symptoms comes new paranoia and talking about it really helps me.

I worry about developing a second autoimmune disease and running out of effective treatments before the drug companies release new ones. :/

Actually, I think it's important for this to stay. We get new members all the time, and this will help them realise that they aren't the only ones who feel the way they do. Then, they get to see the support that they can receive here which is something that may be sorely missing in their lives. I know how you feel though. I ended up in the hospital for a month and a half only a couple weeks after I got married. Then, I had some time in the hospital again when my daughter was only two. Those hurt - but you get through and as the saying goes, "what doesn't kill you makes you stronger." Maybe not physically, but when you get to see what you can actually cope with, definitely mentally.

I agree shamrock we put up without a lot I can only imagine how mentally tough we all be in our silver years!! Lol but whats brought this post on is I've been in the er a few times this summer with new symptoms bad!!!!! Indigestion that's giving me chest discomfort and breathing problems they found a duodenal ulcer what the heck is that!!! Lol idk just hard being sick and the dr's and test and the unknown it's just a lot to deal with

I think the unknown is the worst and brings the most fear. As terrible as a diagnosis is, at least you then know what you're facing. And, like was said above, I have to come to terms with the 'worst case' and then move forward - the thing is, the worst case often never comes and I've spent lots of time and energy worrying instead of enjoy what is. :ybatty: But, this is how I deal with it!

Jison - the duodenum is the first part of the small intestine, when moving from your stomach to the intestines. Have they given you any treatment for it? Or has your GI explained what you should expect with a duodenal ulcer, ie time to treat, if any foods/alcohol can aggravate it, etc.? Having a plan is a 'must' for me... I don't do well with 'hmmm, I don't know, let's see what happens...'! :yfaint:

He put me in daxilant a acrid reflux med b

But didn't say what to excpect or time it takes to heal? I'm having these weird pains that I'm writing off as just part of it but in my mind idk really and that scares me to death!!

well I have been pretty scared of surgery or ending up without a lot of my intestines (i told my doc the other day that if they have to cut any out I wanna keep it....he didnt think it was funny) but I was recently reading up on HBOT and found some pictures that scared me.

these are now officially my worst fears of crohn's disease

My son was put on prednisone and a PPI for his crohn's (worst was in duodenum). He was on the Prednisone 3 months and the PPI for 6 months. He continued to heal even after that. I would say it took a little over a year before he was symptom free and feeling normal. It was a two steps forward, one step back sort of thing. But he did get better, and he had many weird pains. Healing was a much longer process then either of us expected.

Whats hbot? And hbo? And ewwww and ouch!!!

yea sorry about those pics but I was reading up on HBOT (Hyperbaric Oxygen Therapy) for Crohn's by myself and was seriously freaked out by those...apparently those were like worst case, they tried every available med, and still ended up with perineal disease, pyoderma gangrenosum, etc but they said in the studies that 80% of patients showed "satisfactory improvement"

I think that there are a lot of things that are bad and can happen with me from this disease but my worst fear is MYSELF. I am afraid that I wouldn't be strong enough in the future to handle it.

I read the stories of a lot of people here who are worse than me and I always wonder if it happened to me how will I handle it or live with it. I won't know.

I just made a confession I never told anybody.

My son also had inflammation in his duodenum (but no ulcer), he also had inflammation in his terminal ileum and patches in his colon. His treatment was enteral nutrition for six weeks and nexium (antacid). This worked to clear most (all??) the inflammation in his duodenum (it wasn't noted as a concern in his next MRE).

Are you on any other meds for your crohns?

And, it would probably help you if you go to your GI apptmt with a list of questions. Questions I typically ask are...

How can this (symptom) be treated? What are my options? Why are you recommending this particular treatment? How have other patients responded?

How long will it take to begin to work? How will I know if it's working or not? Will you be running tests to confirm treatment is working?

What symptoms would justify a call to you? Or an appointment?

Again, I need to know what's going on (and I think it might alleviate some of your concerns too :ghug... I need to prepare Plans B, C and D before we even commence A :lol: But, I worry much more if I don't know what to watch for, etc. If I know it'll take a few weeks to see a difference, then I won't worry quite so much for that time period.

^^^^I like that. smart questions. keeping this thread for my doctor's appointment.

I worry about developing another autoimmune disease or cancer as a result of crohn's or its meds. I also fear never being able to live a normal life again. I try to cope by staying in the present, I can't predict my future.

- will never have the career I wanted

- jobless on disability

- letting my family down who is depending on me to get us out of poverty

- loveless

HI.

I understand completely what you are saying, and all of your fears are actually normal and rational. It is good that you vented it.
I feel the same way all the time. Sometimes too often.

I fear that I might be alone forever. This disease is a big burden for dating. And I'm too old and ill to have kids.
I'm worried that I might lose my job from missing so much time (due back tmrw and was off for 6 months)
I worry about financial problems, including the cost of drugs
And I'm worried about getting more EMI's.
Sorry....we we just supposed to list one? I did give the short list lol

I worry about randomly dying in the night and leaving my mum alone :/ That, and getting liver damage from lovely Aza which I get on with so well and being forced to have those horrible infusion things or a drug that's even worse. Ugh.

I know I shouldn't be thankful for tbis post, however it makes me realize that all thr thoughts I go through on a daily basis are actually normal and I am nkt alone.
I am scared of
Dying
Leaving my wonderful family behind
Getting cancer from the lovely drugs that are suppose to help us
Getting worse
Having an accident at work
Not being able to work - or achieve any if my goals
When I was first told I felt like my life was over
Having surgery
Omg this list can go on.

But no one is alone in there fears. We are all here

For me it's

Having surgery
Having an explosive poop at work at the same time someone coming into the toilet!.... Then meeting them face to face!
Complications from crohns
Aza will stop working
I will flare during pregnancy

Erm... Think that's it! Thanks for the post... A good vent was just what I needed!

Xxx

I worry some about cancer from the Crohn's.

2

I worry about a national disaster and not being able to get my ostomy supplies or meds especially my blood thinner shots

I hate what this is doing to my body and making me feel old before my time. I have a huge problem with getting older anyway but the aches and pains and having to go to the bathroom every five minutes what with my colon and bladder not working like they are supposed to.... I suppose its my fault for having sat on this disease in denial for so long and now here I am sick again feeling like a little old lady when I am only 38. I am in my prime of life or at least supposed to be. My grandma has a bag she calls Dennis in honor of Dennis the Mennis and this woman is incredible and extrememly inspiring. I try so hard to stay within her light and be positive but sometimes its hard. The ups and downs of this disease really arent fair are they? But this too shall pass..... I just Hate how elderly I feel all the time!!! But guess once I come to terms and get it under control I will feel better. Right? I have been sperated for 11 months from a man who wasnt right for me and Im happy on my own for now. What happens if I never meet anyone else or worse what if I do and he cant cope with the possibility of having to take care of me if and when this all blows up and I cant take care of myself? There ya go. Thats my fear. Being alone with this disease because no one will love me in spite of it. My daughter leaves for college in 4 years.... then its just me.

The most important people in my life now were not in my life during the worst parts of this disease. They don't know me as a sick person. Now that I am flaring, and I have started to back out of social events at the last minute I fear they won't stand by me if and when I start to get worse. I have great friends, and really its irrational to think they won't want to be my friend, but they don't understand the impact it has on me, they don't know what they are in for.

I agree - when my daughter was born, suddenly I was amazingly afraid of my health issues and just not being able to be there - thanks for your honesty!

I am also worried about having another surgery because I have a blood clotting disorder.

So SICK of being cut open every year for the last 16 yrs. it has to stop.

I hear ya there Gutlesswonder, I have had 13 surgeries during a 3 year span with the next looming in the near future.. Something has to give eventually right?

What worked for me was giving up grains - I went Paleo and honestly, my health improved a TON - I'd really recommend it. I had this chronic stomach pain for years - doctors couldn't diagnose it, felt like an ulcer, some thought it was diverticulitis, another Doc thought Crohn's as my energy and depression was just terrible. I changed my diet and never looked back - it is worth a shot. I counsel folks on diet and health now and this works for over 80% of the people I talk to (and I think a large portion of the 20% who say it doesn't work are really not following the diet). Anyway - I'd recommend just trying to do this for 20-30 days and see what happens, I've seen miraculous results!

Just joined this forum this week because I am fearful and needed to find what others in my situation are doing/have done, so thank you for all of this!! It is a wealth of information!

My biggest fear: side effects from being on Azathioprine and Humira for many years, but not really wanting to go through the horrors of surgery.

Surgery
Not being able to live to my full potential because I'm always sick
Always having to depend on my mother
Cancer
Not being able to start the next journey of my life (because I'm too sick); like getting married and having kids.