New and nervous

[shanni]

I've been poking around in this forum for awhile now and finally decided to join after reading so many helpful and utterly supportive posts. What a great group this seems to be!

I was diagnosed with Crohn's about 2 years ago, after having (milder) symptoms for several years before that. I've been on Humira (and on/off Entocort and Pred) for 1 year. Was initially on the standard dose of every 2 weeks, but bumped it up to weekly within the first couple months. That seemed to help as it reduced my flares to roughly once every other month (not as great as I was hoping, but certainly better than it had been). Unfortunately, since January I've returned to flares every 2-4 weeks and they have definitely increased in intensity.

I recently had my first surgery consult and, after much discussion and research have decided to go ahead with the laproscopic ileocolic resection surgery. The surgeon (who was very informative and reassuring, btw) basically said I could either do the surgery now, or wait until I absolutely can't take the flares anymore, but it would be very unlikely for me to avoid it altogether. I took some time to mull it over (and frankly cry about it) and have decided I would rather have the ability to choose this option and plan for it than end up in an emergency situation or having to do it when I'm extremely sick. I'm also extremely blessed to have an incredibly supportive family and spouse who will be (and have been) with me through all of it.

That said, I'm...well...slightly terrified. Surgery is scheduled for 4/24 and I think I would rather either do it tomorrow and get it over with, or back out completely. The logical part of my brain knows all the reasons that this is a good decision, but I find myself constantly second-guessing it and wondering if I'm just making an emotional decision based on the frustration and exhaustion of recurring flares and symptoms. I especially start thinking this way on good days when I'm feeling relatively normal. My husband is supportive of the decision to go through with surgery and has been my voice of reason on these days, but I'm definitely open to any other suggestions, tips, bits of advice and/or pearls of wisdom out there.

:ysmile:

 

[***Lisa***]

Hi Shanni & welcome to the forum:

Deciding whether or not to have surgery is a very personal choice and I would never presume to tell you what to do, however, I will share with you my perspective. My daughter has been struggling with Crohns for over five years and hers is quite severe with lots of ups and downs (as of late, mostly downs, unfortunately). Our view on surgery (and hers as she is 20 and makes the final decision on how to cope with this disease) is that we are reserving that as the absolute last resort. The main reason we have arrived at this decision is that we have done lots of research on the topic and have talked to dozens of Crohnies and 9 times out of 10 times, symptoms are not remedied with just one surgery. It appears that after surgery, often times more aggressive medications are prescribed and more surgeries are needed. Again, this is just what I have found with the majority of the people I have had contact with. In addition, nutrients are absorbed in your small intestines, therefore, if you have any part of your small intestines removed, you will most likely have difficulty absorbing the vitamins & nutrients you will need to retain good health.

I have found that taking the right vitamins, namely Vitamin D3 along with cofactors like Folic acid, magnesium, Vitamin K & zinc, are so very important in controlling Crohns symptoms. Have you had your level of Vitamin D tested? If so, what was your level? Vitamin D deficiency is very common in Crohnies and if you take Vitamin D3 supplements along with the right cofactors, you will most likely find that your symptoms will be more manageable, without surgery. Checkout this string for more info on vitamin supplementation: http://www.crohnsforum.com/showthread.php?p=627519#post627519

Again, this is just my opinion as I am just a Mom, not a doctor. You need to do your research, weigh all of the pros & cons, and make an informed choice as to whether to move forward with the surgery or not. I wish you all the best and if you have any other questions or just need someone to lend an ear, please post away!

I wish you all the best, Shanni.

Lisa :ghug:

P.S. The puppy in your profile pic is just adorable! :ysmile:

 

[shanni]

Thanks for the support and perspective, Lisa! It's definitely a tough call, but you've given me a few more things to look into and think about. I really appreciate!

 

[tots]

It's a hard call to make that's for sure!

As long as you really believe in you doctors you will be in good hands.



Good luck and keep us updated


Lauren

 

[afidz]

Hi Shanni! Glad you decided to join, this is truly a great community for support. I have not technically had a resection so I don't know what you are going through in that sense, but I wish you well. I hope the surgery brings you the relief that you need. I have had a number of surgeries, and in my experience support is key, which sounds like you have a lot of. try not thinking about the surgery itself and instead think of how you will feel after recovery. What things you can do that you can't do right now because of your flares. Or the best of them all, think of the foods you might be able to eat again that you haven't had in forever because of your flares! Basically, just try and think positive and not of the surgery itself, it will calm some nerves.