I need to vent. add yours.

[tacom]

I got my MRI results back from last week.

I'm worse.  It hasn't even been 5 months since my last MRI (when everything was good) and I have an 11cm segment from my distal jejunum through my proximal ileum that is now irreversibly damaged. Before my surgery, my disease mainly just impacted my jejunum. 

I'm so afraid that we won't be able to get this under control (I've been on meds for 8 months and they've apparently done nothing but make me sick) and I'll need another surgery in a few years. I cannot live a normal life on this surgery loop bullshit. I want to be healthy and normal and have kids and travel and not worry about needing to have another emergency surgery with freaking ventilators and NG tubes and bedrest and needing help sitting up. 

I'm feeling sorry for myself right now. Come feel sorry for yourself too. 

[explorer2001]

Oh! Hugs! tacom you have been through so much.

[Deleted]

tacom, a million hugs and I'm so sorry to hear this update. You have been such a powerhouse through so much this year.

[Deleted]

Hugs tacom . That's shitty. Time to head to LV and get that new bag. :-)

Sent from my SCH-I535 using proboards

[Deleted]

Oh no, I'm so sorry to hear that tacom. Big hugs to you.

[lb2006]

Dec 16, 2013 16:43:46 GMT -5 tacom said:

I got my MRI results back from last week.

I'm worse.  It hasn't even been 5 months since my last MRI (when everything was good) and I have an 11cm segment from my distal jejunum through my proximal ileum that is now irreversibly damaged. Before my surgery, my disease mainly just impacted my jejunum. 

I'm so afraid that we won't be able to get this under control (I've been on meds for 8 months and they've apparently done nothing but make me sick) and I'll need another surgery in a few years. I cannot live a normal life on this surgery loop bullshit. I want to be healthy and normal and have kids and travel and not worry about needing to have another emergency surgery with freaking ventilators and NG tubes and bedrest and needing help sitting up. 

I'm feeling sorry for myself right now. Come feel sorry for yourself too. 

My H had a similar emergency surgery as you six years ago.  With follow-up procedures, many hospitalizations, MULTIPLE NG tube placements, etc.

When his surgeon pushed for another surgery, my H was against it at first.  We were both tired of being worried all of the time - not being able to vacation, be far from a hospital etc.  He had the surgery to remove an abundance of scar tissue and has not been in the hospital since.  This was 2.5 years ago  

That being said - there is hope and trust in modern medicine.  Hugs for you.  feel free to PM me if you like, i'll be happy to share our story

[Deleted]

Aw man, so sorry tacom. Big hugs.

[mbcdefg]

I'm sorry

[womet]

tacom, I am so sorry. {{{hugs}}}

[lime]

I'm so sorry.

[Deleted]

I am so sorry. You don't deserve this I hope it's just because this is new and they haven't "figured it out" yet - I hope that once they figure out the right way of handling this for your specific case, you'll get things under control and live a normal life.

[Deleted]

I'm so sorry.

[Deleted]

(hug)

[IrishBelle]

Hugs tacom - I'm sorry. I hope you can get it under control soon.

[tacom]

thank you all.

It's hard unloading on FI because this is bad news for him too. it hurts him too. I don't like talking about it with my family because I think it just makes them feel helpless.

It's really nice to be able to openly talk about my fears. thank you.

lb2006, I am glad to hear your husband is doing well.
blissanity and littlespitfire, I smiled at the mention of the LV bag.

[M]

I'm sorry.

[vtdiamond]

Oh tacom I'm so sorry the news wasn't better. Hoping your docs get it better managed soon.

[Deleted]

Lots of hugs tacom. Please feel free to vent whenever.

On a more positive note (if there can be one), does this mean you will be able pursue the $$$ treatment your insurance didn't want to cover?

[HoneySpider]

I'm sorry tacom, hang in there!

[Deleted]

I'm sorry to hear this. I know it seems like a little bit of a losing battle but don't lose hope. DH worked with a nurse practitioner who had very similar issues starting in her 20s. She is now somewhere around 50 years old, has two children (ages 18 and. I think, 27), and has spent many years in a wonderful career. She has had some ups and downs over the years but she is happy and has been able to accomplish the things she set out to do in spite of an illness that tried to stop her.
I wish you the best in future treatments.

[keweenawlove]

(hug) (hug2) I'm so sorry. I can't even image how frustrated you are.

[alare]

Sorry to hear the bad news :-(. Not fair.

[justjen]

I'm sorry. That sucks

[chikastuff]

I'm so sorry

[sa]

That sucks. :\ I'm sorry to hear that.

You know that my sister and I have had similar issues. I have talked to the doctor specifically about my concerns and they said this should not impact your ability to have children. Also, my mom works in ultrasound and she has many patients with the same issues that go on to have incident free pregnancies and healthy babies. So don't worry about that part of it.

Also, it does suck thinking you could have surgery any minute, but please don't let it stop you from living.

[sweetnsour]

I hope you can get it under control soon. Sorry you have to deal with it.

[krystee]

I am so sorry. Big hugs. My SIL has the same thing, found out at the same age and had a similar timeline of surgeries/finding out things didn't work. Then all of a sudden things turned around and it seems she's been on a really good track for a few years now with no surgeries/issues. She travels a lot and, while she is single now, I'm pretty sure she has plans for kids.

[hurricanedrunk]

I'm sorry you got bad news. I really hope that you'll be able to control it in the future. Hugs.

[sh10]

I'm sorry to hear this news. Hopefully there will be advances in medicine in the coming years that will help you.

[tacom]

yes, I am lucky that there are other options and we will try them. fingers crossed something works. @mrsspunky I've met the requirements according to the insurance company; I'm waiting to hear back from my doctor though. I can't imagine why we wouldn't go that route.

sa, although fertility and fetal/birth outcomes can be impacted by CD, my biggest worry is this situation might be unfair to future kids (biological or not). I know I'm viewing everything through a very narrow lens right now (and I hope I'll feel different as time passes), but in the past 10 months, I've spent a week in the hospital for major surgery, 8 weeks mostly off my feet, had 2 CTs, 2 MRIs, a colonoscopy, an additional ER visit, bi-weekly blood draws, and countless appointments with numerous specialists. I'm so busy worrying about myself all of the time; I would not be a good parent. It also wouldn't be fair to FI to have to take care of everyone. Obviously everyone has emergencies now and then, but I just would want to be in remission. My biggest fear is that I won't get there.

I know that I can't possibly know what the future holds so I'm creating problems for myself, but this was just a punch in the gut so soon after surgery. I'm feeling sorry for myself today and tomorrow I will put it behind me as we move forward with next steps.