HealingWell
Search Close Search
☰

Support. Frustration.

Support Forums
>
Crohn's Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/14/2013 2:51 PM (GMT 0)
Hi everyone,

I have been diagnosed with Celiac and Crohn's disease.  I have dealt with Celiac since 2010 and now am starting to experience Crohn's flares.  My GI doc is taking things slow as far as treatment, which I appreciate, because I am Active Duty Air Force and trying to stay afloat.  I have made 2 ER visits because of D, severe throat/esophagus ulcers and flu-like symptoms thus far.  5 days of Prednisone has done the trick as of now.

Essentially, I am looking for reassurance that while these diseases are ANNOYING, they are not life-changers.  I have a very supportive wife, and I am lucky for this.  I feel guilty that my diet is SO specific and that our lifestyle has changed.  I feel guilty when I lack energy or feel crummy.  I feel guilty that my 6 month old daughter may receive the genetics of these diseases. 

How can I get my focus onto being positive and happy, despite having to live with such strict parameters?  I mean, I don't have cancer... I have all my limbs... I can run/exercise/etc.  What kinds of things do you do to stay positive?  Also, do you complain to your spouse/family and if so, how much?  I would much rather complain to Crohn's sufferers so that it doesn't sound negative/weak.

Thanks,

James

 

 

Posted 1/14/2013 2:59 PM (GMT 0)
James, welcome to the forum.

Stop feeling guilty. Sometimes things happen to us that are not in our control. I'm sure your wife and child will love you through sickness and health. While you may be feeling pretty lousy right now and need more support than usual from your family, you will feel better soon enough and be back to your regular self. You would help your wife through anything, I am sure, and you should not feel bad about needing her help now.

Having a chronic illness does change your life. In many ways it you will be a better person because of it, if you allow yourself the room to grow. You can search this forum - we've had threads every now and then about what good has come to you from having Crohn's - but in general I think you can develop stronger empathy for suffering of all kinds, and also a better and healthier awareness of your diet and lifestyle choices.

The prednisone you're taking now may be a good short term solution, but it is not going to be a long term plan. What is the medication plan for you beyond prednisone? If you are having all of these upper GI problems I would guess your DR is thinking about immune modulators or biologics. Go to CCFA.org and read about the different treatment modalities for Crohn's.
Posted 1/14/2013 3:29 PM (GMT 0)
James,
Sometimes education for your spouse is a great start. If they have a basic idea what's going on it can gain much in understanding. It can make a big difference. Remember knowledge is power. Take control of the Crohns as much as you can, rule it and not let it rule you. Take advantage of the board as many can relate to the head games we go through.

T
Posted 1/14/2013 3:55 PM (GMT 0)
Hi and Welcome to HW, I have been living with Crohn's Disease
for over 10 years. I have been in remission for quite a long time
I do not let the illness deft me. I try to remain positive.
Posted 1/14/2013 10:28 PM (GMT 0)
Welcome, James!

I was married a little over a year ago, and one thing that helps me is that my husband understands when I say I'm not feeling well. I try to make it clear, though, if it's just-a-crummy-day bad or I-need-the-ER bad. I take the time to explain to him but I try not to complain. I do have to laugh when he eats too much junk food and then complains he has a stomachache all evening (lol, then he laughs at himself and feels proud that he can at least empathize in a tiny way how I feel when I'm flaring).

I burned a "feel-good" CD of music that just uplifts and inspires me, gets me motivated, etc. on the days that I feel crummy but need the motivation. For me, the best treatment has been Remicade. There are pros and cons to each medication and pros and cons to diet, herbal remedies, acupuncture, etc. You'll find quickly that everyone reacts so differently to different types of treatments.

Don't feel guilty. What we have really is rough. And as for genetics, out of 6 siblings and about 80 cousins (both sides combined), I'm the only one with anything like this. The next closest thing is in uncle with MS.
Posted 1/14/2013 10:55 PM (GMT 0)
Hi James. I am new to the forum but not new to Crohns. I am also in the Air Force and have had one hell of a year with my Crohns. You can read whats been going on with me in "Desperate for Answers" but if I can offer any words of encouragement is just be positive and don't push yourself. know your limitations and allow your body to heal. God has blessed me with great people in my life. Once person he blessed me with was an amazing flight commander. While I was struggling badly with Crohns she survived breast cancer. During her battle, I secretly looked to her for strength most times thinking that if she could come to work just after receiving Chemo i could surely come to work dealing with Crohns. She one day sat me down, asking how I was feeling and I broke down in tears telling her I could never complain about my health and the pain I was feeling to her, someone that was overcoming Cancer like a champion. She scolded me and said that I was ridiculous and that while her problem was temporary, mine would never go away. Surprisingly she was concerned for me because I would have to find a way to live with this for the rest of my life. Battling medications, food, surgery....but once you have found a way to defeat it or at least live with it, you will feel like you conquered the world. You don't have to do this alone, in fact you shouldn't. You need support and can't do it on our own. You have every right to complain because this sucks. Just stay positive and take advantage of your good days. Take care and God bless.

Post Edited (CDay) : 1/14/2013 3:59:09 PM (GMT-7)

Posted 1/15/2013 9:54 AM (GMT 0)
I have been with my husband for 14 years in Feb. He has been through so many boughts of d with me. Just recently we both got food poisoning. He was having D like 10- 15 times a day. I of course was handling it much better than him because that is a normal flare. He couldn't eat for 4 days. He told me after he got better that he had a much better understanding of what I meant when I said I felt bad. He never realized how much D could take out of you physically and emotionally. I say this because no matter what we tell people it is hard for them to understand what we really go through. They understand the best they can and that is all we can expect. That is why it is great to have a place like this when you can go where people really get it. ALso when I was first diagnosed I found out the CCFA had meeting locally. It might be helpful to see if they have those locally for you. Good luck
✚ New Topic ✚ Reply