What things concern us the most about having Crohns??

for me, it's incontinence and urgency, I use natrual anti-inflammatories so I don't have to worry about damage from RX. IBD doesn't necessarily shorten our lives, it just makes it difficult so I don't worry about a shortend life span.

:)

all of the above.....and then some.

Side effects of medicine, how much it will cost over time, finding an insurance company that will cover me when I'm too old to be under my father's policy, quality of life, and doing the things that I want to accomplish in life. It had always been my plan to travel and work all over the world. I love to learn new languages and experience new cultures, but I realize that it will be much harder now to go to some places(Africa for instance because of the food and required immunizations), or Japan because of the diet I have to be on, and the medicine I MUST have. Energy levels taken into account too. These diseases are still not widely understood so I know that it will make things much harder in terms of pursuing my livelihood. I refuse to stay in one spot forever because I was diagnosed with Crohn's disease...

Fears first!

1. A recurrence of the disease (am in remission for the moment). This give me nightmares...somewhat literally. I don't want to go back!

2. If it was to reoccur, the chance it would worsen (incontience etc).

3. Needing a bag.

4. Having to follow a strict diet.

5. Having a recurrence after having a child.

6. Shortened life span.

7. Needing more meds.

8. This disease will rob me of the chance to have a child.

9. That because of my op (bowel resection) I may not be able to have my future child's birth the way I want (no C-section).

10. More ops!

11. Pain, Pain, and more pain. Been there, don't want to go back!

Now that has made me thoroughly depressed:

On the plus side:

1. It has given me greater appreciation of life: made me realise I have to live each day to the full, because I don't know when it will come back, and I won't be able to do so as fully as I can now. (hopefully not coming back for a very long time, if ever)

2. It's not an ultimate death sentence, as in next month, next year.

3. I won't let this disease make me feel unsexy: hell, I am always fabulous!


Jo

LMills -- despite being hospitalized four times this year for a total of almost 30 days, I did something really insane and went to Turkey for 2 weeks in April. It wasn't easy, but I managed to get through the whole trip without either crapping my pants or having to use one of those hole in the floor toilets. (Pretty hard to stand and aim for us Crohnnies) Anyway, it was exhilirating and I'm so glad I did it, even though I got pretty sick when I got back. I used to think having a bag would be the worst thing that could ever happen to me, but now, I wonder if it wouldn't be a freedom, from the constant pain, fatigue, and need to always have a bathroom in close proximity. I think my biggest worries right now are losing the will to live, dying from the drug combos or complications, or at the very worst, being a burden to my husband. How can I feel like his sexy wife after he has seen me screaming on the toilet in the hospital more times than I can count? No matter how much lingerie you buy, if you are always too tired to do it, you feel like a failure as a wife.

-Never finding a cure... or miracle drug that will lessen flares without turning me into a maniac.

- shortened life span - I want to see my daughter grow up and get married. Have all my paperwork ready just in case I don't make it far.

- Pain/Nausea - sooooo tired of this. This has become my part of my daily life. I now have no life because of this.

- Surgery - don't want it if it won't fix it... and it doesn't fix it... it always comes back.

1. First and foremost, pain. I'm constantly afraid of getting into pain (or if I'm already in pain, having even more pain)

2. Serious complications (such as those that could be life-threatening or severely disabling)

3. Not being able to finish college and work at a job in the medical field (This won't be the end of the world, as if I have to go on disability, I would be able to focus full-time on my writing, but... It would be a major disappointment. Because its always been my dream to succeed where everybody else in my family has not *most of them haven't even finished high school*)

4. Further diet restrictions.

5. More medicine.

6. People thinking I'm a hypochondriac or making things up for attention...

I don't want to have kids (those with Crohn's usually turn out to be high-risk pregnancies; I don't want to take such a risk)... Plus, they're a huge financial burden and require a lot of attention. While I do think I'm capable of giving that attention and still live a happy life, I'm the sort of person that craves to go out in the world and to bury myself in work (research, books, writing)... So, ideally, I do not want to be a parent...

I have only been diagnosed with Crohn's since October so I am still in a learning curve really.  The things concerning me most at the moment are:

1.  The eventual effects of taking medication - I have just had to stop taking Azathioprine as it was affecting my liver so we will be trialling 6MP and what I have read about that online is scaring me.

2.  I haven't made it back to work yet but have to attempt that in January.  What will happen if I can't work full-time ...

3.  The effect on my relationship which I think is pretty much over now, and knowing I may have to face this illness on my own in the future (although I do have family support).

4.  Becoming a martyr to the illness.

5.  I had wanted to start to do a lot more travelling.

Very good topic.    I have had CD/u.c.  for over 12 yrs.  Have had the bag for roughly 3 months .  somedays i would rather have the bag.  Heck, when u have the bag, there is no looking for the b/r's, no waking up in the middle of the night running to the bathroom, Eating almost everything.  My biggest concern is the fear of my Remicade not working anymore.  I have been on Remicade now over 2 yrs.  Works great so far.  another one of my fears is getting Kidney stones again.  wow.  I try to live my life one day at a time and not worry about what happens tomorrow.  So being positive helps me alot with this dd.