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went to see my gastro doctor and after all the reading i have done recenty and hearing all the people that say stress really makes crohn's worse. my doctor's exact words research has not linked emotional stress with flare-up's of crohn's. i was stressed just by him saying that and my stomach started cramping.

ccfa seems to agree with this also and has all these ways that your family and medical people will help you with the stress of having a disease with no cure. i do not have that support that is why i wrote to this forum because the only people that know how much stress having crohn's causes are people with crohn's.

i am going to stop worrying about doctor's and just deal with it the way i want to. which is not the best way but i am going to drink a beer and say *** the doctor's. probably will not feel to good after drinking beer but i am running out of ways to beat the stress.

 Reply posted for vonachens.

wow! thank you guys for making me feel soo much better! my family is just the worst support system... i get alot of  oh you never feel good, or am always having a bad day, and i'm not taking proper care of myself, and then they want me to recite what i have been eating cause, you know it's my fault and all my doing! it is just so frustrating! i have gotten to the point where i just don't tell them everything anymore, they just don't get it. and i just love that after i have a surgery (and i have had 4), they think i'm supposed to be cured and symptom free, lol. i have learned to just laugh it off and realize that they are never going to understand. i have a sister that actually wants to control everything and she goes as far as to blame my doctor and let me just say that i have a great doctor, i put that man thru *** ! but he doesn't talk to me or treat me like i am just another case or piece of data. i have been with him for 15 yrs and can talk to him about anything. he doesn't make me feel intimidated or uncomfortable in any way. sorry, i don't mean to rant, but it is comforting to know that i am not alone. really...thank you soo very much! :)

 Reply posted for charosg.

You can recover from severe bouts with Crohn's. It is hard for the person with certain things for one person and something else for another person. Getting weight back on was always my problem. I would get better and feel great but I developed a problem with narrow Bile Ducts and had to accept more time at Doctor's. I hope you have good Doctor's I have had some not so good times with some Doctor's.
Your husband will need support I had my wife who helped me and this got me back up and going. Work is hard when you feel bad or worry about feeling bad again. Crohn's under control usually is steady if the medicine given works. Good Luck.

 Reply posted for IndeaSkye35.

I am glad to hear that after having severe crohns you are doing so well. My husband is right now very sick with the disease and I like to hear positive stories. They just started Humera on him. I know it is not the best drug and I am very scared. However, they really pushed it because of the severity of his situation right now. How do you manage your disease? how long did it take you to recover after your severe incident?
Thanks

 Reply posted for vonachens.

I know where you're coming from. I've been through so many doctors that I'm worn out from just the visits. I don't have any family members or friends with Crohn's but my family is a good support system. Doctors on the other hand, sheesh. I've had one doctor I only went to twice. I wished to God I could tell you his name so people would not go to him. His words, verbatim: "You'll never get well. Why don't you just give up?" Talk about optimism. I told him that I would get better. He had the audacity to laugh. Today, it takes everything I have not to go to him and shove it in his face that I'm doing great. I have severe Crohn's and was supposed to have died in 1997 but as of today, after all the struggles, I don't take any meds for my Crohn's and I have been completely free of symptoms for 2 years. Yes, I have a plan on how I keep it under control without harmful meds but I have no idea how it would go over with some. I don't know their religious values so I'll leave it unless someone wants to know how I can manage to stay healthy after sepsis, a stroke, 13 seizures, pneumonia, dehydration and weighing only 90 lbs. All this happened to me within 5 days during 1997. I was in a coma for those 5 days. I wasn't supposed to come out of it. So I believe that if I can do it, ANYONE OF YOU WITH IBD CAN DO IT, TOO!!! Just because a doctor has a diploma doesn't make him/her right.

*I'm not suggesting that people on a good medicine program stop taking them if it is working for you.

 Reply posted for vonachens.

Hey, I had a typo in there, I meant to say, I had to medically retire due to the Crohn's was out of control.

 Reply posted for vonachens.

Hey,

I had been reading on how stress and anxiety is not really helping things to say the least.  Just having Crohn's disease in itself can cause anxiety, and stress can certainly cause aggravation.  I have had Crohn's Disease for about 24 years now, first diagnosed in 1987, had a big operation to get some intestine and just a little of my colon removed.  It was not until 2003 that things started to get really cranked up with the Crohn's, it was pretty crappy!, lol  In short, it was not until 2010 that I got my Crohns under control.  I was on Remicade and Imuran for 3 years and all the medications stopped working.  I have had about 8 operations including the last on in "09 when I needed to get a partial colectomy and a permanent ostomy.  I have never felt better now, just still working on building up my energy and strength.  I had been a police officer when I had to medially retire due to the Crohn's was just to out of control.  Along the way though, I never lost my sense of humor and stayed motivated and driven to get my  health back.   I'm looking get back into police work now more then ever, and even have I think figured out how to ware the duty belt and all the gear and not have it interferer with the ostomy.  That's the poop on that, I really recommend to keep researching Crohn's and make sure you have a GI dr you like, that is vital!  Reach out to CCFA like you did, and maybe go check out a support group and you wont feel nearly as alone.  I hope you can find a couple things I have talked about that may help you with the stress.  Coping with the stress is huge so to be able to channel that energy into combating the Crohn's. 

Take care and keep talking to people about it that you are comfortable with.  I understand big time, that when you talk to say some co workers who just don't get it or try to understand.  Reach out to people who have IBD and its amazing on how much less isolated you will feel thus being more motivated to better your health.

Andrew

 Reply posted for dak233.

It does help to know other people are going through the same things, though!

 Reply posted for vonachens.

I can definitely see how being strapped down in a dentist chair might cause your gut to go haywire from anxiety.  I get anxious like that in situations where I feel I might be "trapped," too.  The only bad day I've had this week was on Monday morning because I had to help out with a large meeting in an auditorium at work. My gut just started rolling because I kept worrying that I might have to race out of the auditorium to go to the bathroom and would humiliate myself somehow.  I KNOW those stressful thoughts caused the rolling gut, because my new meds are working and I have not had an issue since then this week or for several days prior.  And I did have to sneak off and spend more time in the bathroom that morning than I had in a week combined!

 Reply posted for vonachens.

I think you two have the same Dr. as I do lol  I read your posts and cant help but get chills down my back cause I feel I live those exact same moments! 

 Reply posted for vonachens.

I think you two have the same Dr. as I do lol  I read your posts and can't help but get chills down my back cause I feel I live those exact same moments! 

 Reply posted for BluSkye.

I really like your messages. Makes me feel better somehow to talk about the situations our health puts us in. I have told you more than any of my family members or friends. Somehow easier to talk with someone that relates. I have times when I am feeling OK and I have no control over when my symptoms will start and I get a lot from my family your just saying you do not feel good. That is not true I do not do that but if I get stressed about something I then start to worry that symptoms are going to start.

I had a Dentist appointment Monday and I was OK all morning but when I got to the Dentist I started having stomach cramps. They got so bad I had to say something to the Dentist and I was really embarressed. I have a blockage type deal with my Crohn's I will get terrible cramps but going to the bathroom is usually no relief just keeps cramping until I can de-stress somehow. I do think it has a lot to do with diet and I have lost weight again since I had the Bile Duct problem so I have trouble finding things to eat that I am comfortable with.

Hope your having good days. I am thinking more about how to improve quality of life. You said that and now I think well even if I have to do it by myself I am going to try to find ways to feel better. I have gotten to a point where my favorite thing is to get to the weekend or a day off and be by myself. Seems like the best way for me to become less stressed and forget about how demanding life can be.

 Reply posted for vonachens.

I feel a lot more calm after posting back and forth with you, also.  I can't really explain why, either.  Funny, isn't it?  You're right, I was so frustrated and just was flailing around like a broken top and knowing you're frustrated about some of the same things just stopped all that somehow.  I think it makes me not feel like an alien creature the way I sometimes feel with my family, friends, and especially medical professionals. 

When doctors tell me there are no studies to support the way I feel or what I believe is contributing to my illness, I get even more frustrated and stressed.  I am NOT data!  So, I know how you feel. Did your doctor think you were going to suddenly say, "Wow, there's no study data that indicates my stress is contributing to my disease? I suddenly feel so much less stressed out now.  Thank you!"  Even if stress had NOTHING to do with your disease (which I don't buy--I think stress can intensify a lot of symptoms), it has EVERYTHING to do with your quality of life and that should be concerning your doctor.

I'm glad to read that you're feeling like putting some more effort into getting as much quality of life as you can, too.  That's what I intend to focus on. I'm going to look at more ways to destress my life, while still holding on to my values of being a responsible person and pulling my own weight, as much as I am able to do. 

I'm just going to fight to have the life I want on my own terms, while paying attention to my health too. And I hope you're going to do the same!  Thanks so much!

 Reply posted for BluSkye.

I really like the way you explain things you seem positive even though things are really challenging. You sound like someone who rises to the situation and thats what I need to start doing. I cannot explain it but it is very interesting talking about and hearing your struggle as we are similiar in our situations. 

Think is was good you talked to your people at work. I have people that care about me where I work and I think if you are honest with people it is better than hiding what is happening. There is nothing pretty about these diseases but we have them and we have to keep living so when I meet someone that makes light of what I have it can make me mad but I more often now just shrug it off and move on.

Take care and I hope the new treatment you are looking at gives you some relief. Something in talking back and forth with you has calmed me down a little. I was getting a little mad and having trouble expressing it and when I think about someone else struggling and not having a way to express frustration I relate.

 Reply posted for vonachens.

Thank you so very much for this post.  It means so much to me that someone can truly have empathy for me, along with understanding what I have been going through.  I feel like I fell down the rabbit hole, because I have never had so much as a cold before I got this confusing, peculiar disease.  I've had psoriasis all my life (another autoimmune disease) but otherwise been ridiculously healthy.  

 Reply posted for BluSkye.

I do struggle with morning stress like you do. I usually have a stress headache before I get to work. The Bathroom sessions you are having to deal with is really hard. I can have symptoms that last more than an hour but not that often. You having 2 to 3 hours of symptoms would be unbearble.

You sound so stressed about your work and what your health is doing to your work situation. I do not have an answer but I do struggle with the same problem and as time has passed I am starting to realize that trying to be healthy is important even though I do not act like it sometimes. I feel really guilty when I do not get my job responsibilties completed. I just say to myself when I cannot do it well life is tough but the company will move on with or without me being there.

You seem determined to find some combination of treatments that could help. I cannot take the newer Crohn's drugs because of being Auto Immune but thay say some of the new drugs will help. Can't think of a worst situation than your in but there are no good situations with having a Bowel Disease. I have never had a time when it did not effect my life. I keep trying but it is getting harder and I just get down sometimes.

 Reply posted for vonachens.

I feel for you.  I posted last week that I am having a really tough time with my recent flare-up of UC (proctitis).  I've missed more than 3 weeks of work in the last 3 months.  I wake up in a complete panic almost every morning because I don't know if I'm going to be able to go to work or not.  I only have flare symptoms in the middle of the night or during the morning (generally) and the duration varies wildly. Some days, I just have to go to the bathroom for 20 minutes, off and on, and some days it takes 3 or 4 hours.  Some days, I will drive part-way to work only to realize I have to turn around and come back home.  I soiled myself in the car for the first time ever a few weeks ago as well.