In the hospital . . . again.

[stella_luna]

Unmitigated pity party ahead. Just a warning.

Second time this year for a small bowel obstruction. That makes the 9th since my first one in 2008. Despite eating almost nothing . . . I eat low fiber, gluten free, no skins/seeds, etc. I eat about 75% liquids/smoothies, along with a little white rice or gluten-free pretzels.

I can't imagine being more depressed and defeated than I am right now. I'm guessing only you guys know how awful this feels . . . to have something incurable, unfixable, that will never get better, no matter what. (I'm talking about adhesions, now . . . I know some people with Crohn's get better. But adhesions are apparently unfixable, always.)

I'm 42 years old. I can't believe this is what my life has become.

I cried for about 4 hours straight this morning. Starting to again. My daughter doesn't deserve a mother like this. My husband doesn't deserve this either. We never travel, because I have to be close to a hospital at all times.

Wow, I can't believe how bad my life sucks. It was so great until I got Crohn's. Now it's hell, absolute hell.

 

[Cross-stitch gal]

So sorry to hear about you in the hospital Surprised that in all my years of having been diagnosed with IBD my DR never put me in there no matter how I felt. Although, I'm starting to wonder if sometimes it might have helped if she would have. Glad to hear that you have a husband to support you through this. Hope all will go well for you and that you'll soon be back home again with those you love.

 

[tiloah]

I'm so sorry you are struggling so much. *big hug*

 

[Astra]

I've been there Stella and it's just horrible, I really feel for you
Take care sweetie, we're all here for you
xxx

 

[Lindz]

Stay strong, your in my prayers! Never give up! Keep us updated, if God brings you to it, he can get you through it

 

[tots]

My kids love the state you live in! Hershy Park is their favorite place! I have Crohns and I was able to manage that trip a few times with just my mom and my three kids. It might be a fun place to travel with your family- the park is clean and I didnt find it to be over crowded- bathrooms always near byand clean- Best Western close to the park and actually a good hosp too. I know after a hard summer it was nice to do something normal with my kids. If you havent been, I can give you more info!! BTW- you dont deserve this either and I am sure your family loves you just the way you are!

Lauren

 

[archie]

That is crap however can the GI or surgeon not come up with a better treatment plan for you surely there can be more that can be done for you. I hope you get better soon (( hugs ))

 

[Samboi]

Bloody CD is a miserable master.
I hope this hospital visit sees you better.
Hugs.

 

[sawdust]

:hug: Sorry to hear you're having a rough time... and "rough time" doesn't even cover 9 bowel obstructions! YOU don't deserve this. Is there a second opinion you can get? I realize there are some difficulties with your case, but it can't hurt to have someone else take a fresh look at you, right? :hug:

 

[Kip1]

Hi Stella

I am so sorry to hear you are so ill. It will get better for you although no one can say how long it will be till this happens.
My mum had Crohns from being 17 years old & was very ill when I was growing up as there was little known about the disease at the time. It was very upsetting when she was taken in to hospital as very often it was for 8-10 weeks at a time, but we all rallied round & went into what I used to call hospital mode.
Please dont say your daughter doesn't deserve to have a mum with this illness. I am sure she loves the very bones of you, Crohns or not. I never once begrudged taking care of my mum & maybe that is what has made us much closer than most mums & daughters are.

It was nice when I came home from school to get my household chores finished then sit & chat for hours with mum about school, friends & everything else that girls find important when they are growing up. How often do people take time out of there regular everyday lives do do that.

Now I have been diagnosed with Crohns & mums helping me. She is 57 now & she has been doing really well for the last 8 years.

I will pray that you find some relief from your symptoms very soon.

You will find all the support you need from this site so if you need to vent or need a virtual hug then your fellow crohnies will be there for you.

:ghug::hug:

 

[stella_luna]

Thanks, everyone. I'm already at one of the top GI hospitals in the USA (University of Pennsylvania), and have one of the top specialists as my doctor. I've been considering going to the Mayo Clinic (the top GI hospital in the USA) for a second opinion. The problem is . . . nothing comes up abnormal on tests. CT scans show obstruction but no cause for them. No one knows why I obstruct constantly. It's never from inflammation. I did have a tight stricture removed so my GI doc thinks its adhesions, which of course are undetectable and unfixable. I met a surgeon here and made plans for him to do an exploratory surgery where he just opens me up and tries to figure out what the hell is going on. I'm so desperate at this point I'm willing to do this. Of course I'm assuming he'll open me up, say there's nothing out of whack, and this is just an awful curse put on me by a universe that hates me with a passion.

 

[Kip1]

Stella lets hope they do find something that they can sort out for you.
It is so frustrating for you not to have the answers you need to start you on the road to recovery.

Its no wonder you are feeling so down.

Take care & keep us updated with your situation.

 

[stella_luna]

Kip1, I can't tell you how much your post means to me. The worst part of this situation is that fear that I am ruining my daughter's life with this illness. We are very, very close. She suffers terribly when I am away from home, and when I am sick, and for the last few years it's been a constant stream of hospitalizations and doctor's appointments. I fear she will grow up depressed and angry to have such a sick mother. I love her so, so much, and want nothing but to raise her and be happy with her and my husband. Instead I cause them suffering and inconvenience, messing up their lives. Your post gives me hope that maybe she too will grow up and remember the good parts of me.

 

[Kip1]

Stella you are a loving & thoughtful mum & wife & the fact that you are worrying about your daughter & hubby is understandable.
I did used to be upset when my mum was in hospital but usually there was so much to do at home etc I was kept very busy. I had a younger brother & took care of him too.
It made me appreciate how much my mum did for us all on a daily basis.
When I was very small I stayed with my gran whilst mum was ill & dad was working & as a consequence she has always been like a second mum to me. We are very close & so are my children with her.
I think growing up with a mum so ill has made me a stronger & more thoughtful person.

As long as you love your daughter unconditionally she will be a happy, caring child.

Before I had crohns I have had various kidney & bladder illnesses & have had arount 16 lots of surgery altogether. When I was recovering from these we always found fun things to do at home. Monopoly was always great (although my eldest daughter always cheated) & as the girls loved Buffy the Vampire Slayer we used to have what we called our Buffy nights. We used prepare some nibbles & myself the hubby & girls used to sit round & watch the show.
Even now my daughters say they used to love buffy night & for a giggle we watched them together again recently. They dont remember that I was quite ill at the time but how we used to do things together.

Please don't despair Stella. You are going through a bit of a blip with your life at the moment but take strength from the support of your family & friends & this site & be a fighter.
Take care
& have a big hug from Helen :ghug:

 

[Kip1]

Hey Stella

How are you today?

 

[stella_luna]

Hi Helen,

Thanks for checking in . Feeling better day by day . . . we had a nice day yesterday hanging out in New York City, seeing a show, a great family day with my husband & daughter.

I also had a talk with my daughter about my illness and all my hospitalizations, just trying to gauge how she feels about it (and actually trying to determine whether I should ask the school counselor to talk with her), but she really seems OK. She said she misses me but is never scared, she says she is used to it (which I admit broke my heart a bit) and that when I am in the hospital she always knows I will be fine and will be home in a few days so she tries not to think about it. I think that sounds pretty healthy.

Gearing up for the next round of testing. Four of them (colonoscopy, gastric emptying study, enterography, and hydrogen breath test). If all normal, my doctor said, he will assume it is adhesions and I will have surgery this summer. I just hope he figures it out. I am done with this. 100% done.

I hope you are feeling well at present .

 

[Kip1]

Hi Stella

Glad you are getting out & about & enjoying time with your family, I have not been to see a show in years. I think Guys & Dolls was the last one I saw.

I knew your daughter would be ok. She has a great mum & therefore a good role model so she will be cope just fine.

I know you are having to go through all these tests but If they can help get to the bottom of your pain it will be worth it.

I am going to see the surgeon on 20th of April so will get my date for surgery then. I am feeling much better than I was last week so fingers crossed I can keep it up.

Let us know the results of your tests & what the next step will be.

Hugs from Helen
:hug:

 

[stella_luna]

I am so glad you are feeling well. Good luck on April 20. It is my dream that someday a doctor or surgeon can fix me and I hope the same for you (and all of us here). Please keep us posted as well. :hug:

 

[tots]

Stella- Are they going to remove your adhesions? That may give you alot of relief from your symptoms. You know I was thinking- Think how much compassion and empathy your daughter will grow up having. Traits that will always serve her well!! :ghug:

 

[stella_luna]

Yes, the surgeon I met during this hospitalization is confident he can remove the adhesions and make me a lot better. He did say that more adhesions will be formed with every surgery, but that they almost never cause obstruction and chances are if he removes the ones causing me to obstruct I will be better. He also said my bowel may have settled wrong after my last surgery and may be bent in a way to cause problems, in which case he will smooth it out. I hope he is right because I would love an end to this nightmare of constant obstructions.

Thank you for your comments about my daughter, I hope there is a bright side to this, and it helps me to hear that she may turn out not only OK, but that my health issues may help her grow as a person.

 

[Kip1]

Hi Stella
The news from the docs seems much more positive.

Hopefully this will be your last bout of surgery EVER!!!:thumleft:

Keep up posted with how you are doing.