Hi everyone -- I finally found this forum and have been really enjoying and learning a lot from your posts. It has helped me with anxiety and questions about my upcoming surgery (so thank you for that big help!).

Short bg: I first had UC symptoms in 1996 (when the GI doc told me, "You really should learn how to relax." gee thanks). Then off and on till 2001 when it got really bad, finally diagnosed in 2002. I've tried just about all the medical stuff, the diets, the herbs, acupuncture, whatever other straws I could grasp at. I didn't want surgery for a long long time but I never had remission from my symptoms for about 10 years (believe me this got very tiresome). Luckily they were not terribly severe most of the time but just relentless. Finally I felt like it was time for surgery. Which I am happy about if only because I can stop bleeding and cramping and messing and puking and lying listlessly on the couch half my life.

Anyhow -- so it's all good. I have only 2 weeks left to wait. My partner of 9 years (boyfriend/fake husband/whatever) was going to help me through the recovery. He's been through all the treatments and the ER visits and all that other craziness with me all along so this just blindsided me: he told me today that he cannot take care of me anymore, that taking care of me made him so stressed out that I was making him sick. He then packed a bag and said he was leaving town.

Well -- what can I say? except that I am terribly disappointed in him because I thought he was a decent human being. I understand that it's stressful to be a caretaker. (I did try to be an easy patient.) But he could have given me some more notice.

Now I have to figure out who can help me out when I am going to have a hard time getting up or whatever after I come home. I am completely broke so I can't hire someone. I have Medicare due to a disability, does anyone know if home care nurse is covered by that?

I have friends who can help but I don't want to pile all this on them. My mom will also help but having her around too often raises my blood pressure if you know what I mean. I am hoping to just spread things out among people as much as I can.

Does anyone have any advice about organizing things ahead of time so that I can do this? Would it help to have a schedule for people to maybe sign up for? Or is this really asking too much of my friends? If one of my friends were in this position I would be happy to help them but sometimes I think I'm unusual.

Also, after you come home from surgery, how much help do you need? Do you need someone to help you every time you need to go to the toilet? Can you walk from say, the bedroom to the kitchen (I don't have stairs) by yourself?

Thanks for any advice you might have. Also if you have an extra hug lying around I could use it about now. Sorry this is such a heavy post for my first time. My brain is still trying to assimilate all this.

Thanks for reading
Kate (pidgie)

Hi Kate,
Sorry to hear about your situation, its hard enough going through all of the health stuff without mr pidgie walking out.
Did you have any idea that he was getting fed up?
Sometimes when going through a big illness you can find that you get quite self obsessed and you can kind of bypass the people that you care about.
If he only left recenty then maybe he needs some space and a bit of a rest from it all, youve been together for years and he has helped you through a lot already so I can understand that he is maybe feeling a bit neglected etc.
I think he is probably hurting quite a lot (as Im sure you are too).
Just one thing....when you speak again I wouldnt make any reference as to who will look after you etc or your op etc, speak to him about the relationship its self and how you miss him for him and will miss him for him and not miss him for what he can do for you, maybe turn things round to how you would feel if you were in his shoes (i appreciate your the poorly one). I know its hard (I have been there) but try not to let everything and everyone revolve around you and the illness, try to think of the bigger picture.
Once the ops are done and you start feeling better (which you will) you will be able to get on as you did pre UC (most people do).
What Im trying to say is dont let the illness beat you and rule you.

Jeez Pidgie, you do have a lot on your plate. Are you going to have the surgery in l, 2 or 3 steps? I'm only asking this because you won't be "going to the bathroom" until step 2 or 3. You'll be moving slowly but probably won't be needing help 24/7. People preparing meals for you would be helpful. Preparing your home ahead of time helps. I kept a chapstick in each room and the phone near me (charger, too). Things like that. Good luck and vent all you want.

On to the practical... You should cook and freeze as many low residue meals as you can so you don't have to do a lot of cooking. Have lots of salty snack foods on hand and a variety just in case something doesn't agree with you or you're just not in the mood for a particular food. Purchase electrolyte replacement drinks because sometimes water just isn't enough.

Get a waterproof crib pad for your bed. Some people have found that it's easier to sleep in a recliner chair immediately after surgery.

Hopefully Suebear will be by to offer advice because she had surgery and had no one helping her after. And she did just fine.

I think you'll find that his leaving will ultimately make you stronger. Although, I must say that was incredibly horrid timing on his part. Shame on him. He couldn't wait until after the surgery and recovery?

Just play it by ear. I don't know that you need to schedule them unless it makes you feel more comfortable. Or maybe you could have them be part of the process and ask them what they'd prefer.

Yes, you should be able to walk around your house. They make sure you're up and walking before you leave the hospital.

And here's that extra hug and a few more. Use this site as much as you can between now and your surgery. The people here are extraordinary and will be more help than you can ever imagine.

kathy

Thank you all for your kindness.

torie, I thought I was being as non-self-involved as I could be. (I don't tend to complain about it, but I can't help vomiting or lying on the couch zonked on medication..) I usually got what I needed myself unless he offered. Whenever he wanted to go out and spend time with his friends or just get away from home/my illness I always thought that was good for him because I know it's stressful. He started spending more and more time away from me this summer. In hindsight I guess I can see the progression. I just never, never expected that he would be this hurtful.

Lambiepie, I'm having a 2 step surgery. I know that I won't be passing much but I had been told that mucus continues to come out (or does it just come out when it feels like it?) so what do I know (plus I can't imagine not going to the bathroom every 30 minutes).

Thank you kathie and everybody for your words of advice and kindness. I did meet with the surgical nurse today who helped figure some things out. I think I have to trust the surgery staff and myself and everything will become easier eventually.

Kate

Hi Katie,
I am so terribly sorry for the selfish B's inability to stick around long enough for you to make to the other side of surgery...a pox on him ...
As for the practical side, I would definitely stock up on bedpads (swipe a couple blue pads from the hospital, saves on changing the sheets!), go grocery shopping and buy easy to prepare micro-foods like mashed potatoes, frozen foods etc...stock 3 levels of foods. Soups and lights for the very begining, salty/sweets for snacks and protiens/veggies for real food. You may like to get some vitamins in to help you regain your strength quicker: a strong multi vit, B's that you will no longer assimilate otherwise, Iron if you tend to be deficient and Silicium for healing (check out other people's suggestions on this site for other ideas like protien bars for quick snacks)..
Clean or get your house and laundry cleaned before leaving, you will not be vacuming or doing laundry for a little while.
If you use bottled water, buy it now. You will not be carrying it eiter for a while.
Keep everything you may want at an easy to reach level. NO bending or stretching. Pull down the extra blanket now.
I've done this alone and my big problem was boredom and grocery shopping. If I didn't buy it beforehand I just had to live without it. All of my do-good friends were mysteriously absent during those dark yrs.
No squating down either. So put everything you need on level sufaces like your CD's on the desk, pull down your books and keep meds easily accessible. Inform your pharmacy that you will be calling in scripts and need delivery or have someone pick them up for you...pre sign authorizations at the bank ( a biggie!).
Generally you will need your friends and family for small stuff and just plain company/distraction. I didn't care if they sat there and stared at me..I just needed the company.
Good luck and don't worry too much about the big B's desertion..this is the time when you need supportive people around you. You may be surprised the relieg you feel in the long run if he has been giving off negative vibes....
Hugggs
Sharon

Geez, your GI and my General Doctor must have been classmates in med school. Back in the 90s my stupid doctor told me to quit my job because I was having mild UC symptoms. Idiot....

Anyway, yes I took care of myself post surgery. I was fine. I had a surgeon who assumed that most patients lived alone and he wouldn't release his patients until he felt they could manage on their own. Part of his regime in the hospital was making us walk every day and before his patients are released they have to walk a full mile which is charted on the hospital floor. I think his method worked well.

I only used a friend once, my first grocery shopping post surgery. After that I was on my own. Even though I was recovering, I felt loads better without the nasty colon so it did make things easier. You can do this but do be sure to lean on those who have offered to help, if you need it. Be sure to arrange to have an ET nurse come by to assist you with your temp ostomy. After a couple home visits you should be an expert. Also be sure to walk every day. Exercise will help you with your recovery too.

Sue

I had a very uneventful two surgeries and spent most of my time sleeping after the first step! Don't know why but I was wiped out! My doc and the hospital arraigned for a home health nurse to visit me every day for about two weeks to take my vitals. And, they arranged for an ET nurse to visit me almost immediately after discharge to help me learn the tricks of changing my "baggie" in my own bathroom. She was invaluable! Just having someone check on you by phone or by dropping by each day will reassure you you will get through this just fine! Besides the forum is just a click away to help answer questions. It is a real journey but every day things get easier. Best wishes!

This has been a real help to me. I feel much less panicked about it now. My friends and family have really been supportive and the surgery nurse reassured me that I could do it. Having heard from you who have been there makes me realize that I am going to be ok and I can work it out as it goes along.

I feel more that I can handle this and then I will not only feel better but not have to deal with a selfish boyfriend! hah!

You guys are great.

I just wanted to add one more thing. Add a couple bags of marshmellows to the pre-surgery shopping list. The marshmellow's can slow ostomy output for a little while after ingestion. The slowdown helped me tremendously during those first appliance changes, before I got a bit of effiency/speed/confidence.
good luck!

Hey Pidgie,
Hope your doing ok, just wonderd if you had heard anything from him?

I second the marshmallows!!!!!! What a simple solution for "keeping the lid on" during those wafer changes!

Pidgie, thinking about you. How are you doing getting ready for the big day? I wanted to suggest that you use the help of the hospital ostomy nurse. Mine was good but went so fast, like I'd had a piece of my small intestine sticking out of my belly my whole life and was used to this. It took awhile to process the bag cleaning, changing, etc. (anesthesia keeps you a little groggy for awhile) - I had to slow her down a bit. You may want to have a friend in the room when the nurse demonstrates for you, just as another set of eyes and ears. Not absolutely necessary, but just a suggestion. Good luck, keep us posted....

Hi Kate,

I wish you lived in the NYC area. I would let you come and stay in my guest room so my husband and I could take care of you.

In the state of CT we have a telephone number we can call that has info for all kinds of services in the state. Do you have one in Virginia. They might be able to find help for you after your surgery.

Hang in there and Good Luck.

KangaRoe

Almost forgot......

-----H[COLOR:BLACK]*U*G*G*S[/COLOR]-----