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decision time? please help

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Posted 6/28/2012 1:23 PM (GMT 0)
Hello everybody, it's been a while since I visited the forum.  That doesn't mean I was feeling fine.  I have been battling this flare for months, and I think it's time to reach a decision...

My GI is an amazing doctor, and he is totally against surgery.  But I'm fed up feeling so sick every day... I have a stricture approx. 40 cm (15'') in the TI for years, which is causing me great discomfort.  I have nausea and d everyday, I don't have the strength to do basic things, I only go to work because we need the money, and having 2 children at home is not easy.  They deserve a good mom, and I see it in their eyes how dissapointed they are when I cannot do stuff with them.

I'm taking 14 pills everyday, not taking any vitamins, and I feel like 80 years old although I'm only 38.

The strange thing is that when I'm on vacation, my symptoms are much much better! I know stress is a huge factor when dealing with Crohns, but this is not quality of life.

My main concern when it comes to surgery is that I'm scared to death to do it... I'm afraid I will not wake up. I will not make it. 

When I discuss surgery with my GI, he says that this is the last option and it doesn't mean that Crohns will go away.  But, boy, what I wouldn't give for some months of feeling normal again...

I haven't accepted the fact that Crohns is a part of my life, though I have it for 13 years now. I'm afraid to plan anything, because I don't know what will happen.  I was offered a great trip to Iceland with some of my colleagues, but I refused, because I didn't want to ruine their vacation if something happened..

Any thoughts? words of comfort?

Thank you so much in advance for listening/reading.

All the best from hot Athens

Christina

Posted 6/28/2012 1:57 PM (GMT 0)
Christina, please visit the ostomy forum to talk to people who've had surgery. Not that you would have an ostomy, or even a temporary one, but many over there have also had resections.

I am pretty sure I have a stricture and I need to call my GI to get scoped and figure it out. I understand the hesitation. But I think you're smart to realize how much quality of life loss you've suffered. It is important, IMO, to balance risk with reward, and you already understand how much you have to GAIN by having surgery.

Sure, there are risks to being under anesthesia, etc. You can manage some of the risk of the surgery by choosing a good surgeon and a hospital where post-procedure infection rates are lowest. Ask your GI about how to do this.
Posted 6/28/2012 7:00 PM (GMT 0)
Thank you so much kazbern for your reply. And I know you are right, but sometimes you just have to hear it from somebody else. I have some serious thinking to do over the weekend!!!

All the best,
Christina
Posted 6/28/2012 7:14 PM (GMT 0)
Hi Christina,

I understand why your doctor is against surgery. I've had a resection on my terminal ileum performed 2x (17 years old and 24 years old). While I came out of each surgery feeling amazing for years, I abused the good feeling. College and immaturity took over, and I treated my body like anybody else, wanting to party and think carefree, hence the 2nd resection.

I'm flaring again, and after my last colonoscopy, my doctor decided it was BIOLOGIC TIME! You didn't mention in your post but I feel has become an important step for us trying to prevent surgery to look at the Biologic options as it is helping many, and hopefully will help me as I start Humira injections tomorrow.

Hope this was maybe a little helpful. Good luck, and best wishes.
Posted 6/28/2012 7:39 PM (GMT 0)
If your doctor is totally against surgery, what is the gameplan to better health? If he's out of solutions, then why is he or she against surgery?

My doctor advised surgery as a last resort, but when it came down to it, she said things like daily pain, non-responsiveness to medicines, risk of emergency surgery due to blockage at stricture site, etc, were things to consider in the pro-surgery column.

My pain affected my mood and my temper. My son, who was 5.5 at the time, said that he "missed his old daddy." That's quite heartbreaking to have your young children hold a mirror up in front of you like that. These changes impact me so slowly from day-to-day that I rarely am that different than I was the day before...but if I thought back to last month or 3 months ago, I realized that - wow, the pain really was worse, and I have become less available, quick to anger, and frequently laying down, etc.

I've been doing great the past year since surgery. I'm not going to be a history revisionist, though, and say "I'm so glad I had surgery, I wish I had done it sooner". It was a difficult decision that is not to be considered lightly. You go into it knowing that the odds are highly in your favor but the risks aren't zero either.
Posted 6/28/2012 8:14 PM (GMT 0)
First -- it's good to hear from you, I've been wondering how you were.

I know the thought of surgery is scary but I encourage you to seriously think about it. I had a stricture at the site of my first resection for years and the pain finally got so bad I told my GI it was time. Luckily he was all for it, he said it was my choice when to do it. I was so glad it did it, life without daily pain is wonderful.

When they removed my terminal ileum in 1982 I was 21 and scared to death of an ostomy, but I spoke with someone and knew I had no choice but to have surgery. I was literally at death's door. Long story short, no ostomy and I've had more good than bad since then.

So whatever you decide let us know and we'll be sending good vibes your way.
Posted 6/29/2012 5:09 AM (GMT 0)
Just woke up and saw everyone's replies, thank you so much for caring! My doctor's plan is to give me azathioprine (I don't know if I spell it correctly) and if that doesn't work, then he might consider surgery. I'm afraid to try out this type of medication, but then again I'm afraid in general. Crohns Disease unfortunately is starting to be common here in Greece, I have two colleagues who has it, both women, the one had a resection 12 yrs ago and the other one is on Humira. And by discussing with them, I realise that we may have the same disease, but it affects us in a completely different way.
Clonehead: I know what you are saying, my daughters are 16 and 12 yrs old, and they always say that I don't smile anymore, they hate to see me unhappy. Yesterday when I came home from work, the house was so clean, they had moped the floor, ironed all the clothes, etc, and they said "we did it so that you can be happy", brought tears to my eyes. This is what I am supposed to do as a mom, not them! My husband is very supportive, but I can tell that he cannot discuss my health issues everyday, he believes that my symptoms aren't that bad...
Lamp61: I'm so happy to hear from you, and thanks for all your advice.
Going away this weekend to our summerhouse, I'm sure a nice swim and a long walk in the sea will help get my spirit up...
The only one who doesn't really understand is our dog, and I'm so happy I can have her sleeping next to me without asking what's wrong!

I hope everyone has a great weekend, and hope once again my english is not that bad!

Take care everyone,
Christina
Posted 6/29/2012 11:10 AM (GMT 0)
Hi,

I am a new memeber can anyone tell me if they are taking purinethol for their condition

I am in remission with it but want to start a family and have been told definately not when on this drug but gastro doctor says this is the only drug to help keep me in remission i have only been married 6months  getting the illness 2 weeks before my weddding i cant bear to think i cant have children

Posted 6/29/2012 1:49 PM (GMT 0)
Honestly, for the longest time I thought that surgery was the worst case scenario or the last straw... I had the mentality that a pouch meant the worst! BUT i have learned since having my ileostomy in january that it is 100% worth it! and i am not giving up on options!! Dont give up either and dont be scared! Surgery for me was a way to truly "rest" my colon, I didnt lose any parts or have anything removed, a simple diversion to give my stricture a rest! dont be afraid to give your body a rest too!!! Good luck to you. :)
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