Just a little sad- Vent

[Jer's Girl]

Well, I had my reversal almost a month ago now and have spent most of my time since then in and out of pain and in and out of the hospital. I really didn't know what to expect after surgery, so I really don't know if this is normal or not. The Dr's and my Surgeon don't really seem to have much advice for me either. None of them have really dealt with ostomy reversals in Crohns patents before and don't really know how this process is supposed to go either.

I have lost a lot of the weight that I gained during my time with the ostomy. Granted, I did want to lose a few pounds, but I like to stay between 118 and 122 (I'm 5' 4") and have very quickly gone back down to 115, form 128. I am okay with this weight, although it is not ideal to me, but I just don't want to keep losing. I know that many of you can relate to this, even if the rest of the world thinks its great to lose weight no matter what the reason is. I wish I could just have one recognizable size, rather than ranging between a 0 (ugh) and a 6. I'm about a 4 right now, which is okay with me, but like I said I just don't want to go any lower.

I am starting to feel a bit better day by day, but I am still not sure that I made the right decision. Don't get me wrong. I do not want to get the bag again, or go through surgery again, but aside from a few problems, life with the ostomy was pretty great.

When I had my ostomy, I had zero Crohn's pain. Again, I had other problems, and pain from things like blocks at the beginning, but it was nothing like the pain that Crohn's can bring. I almost forgot how painful this disease can be.

The good news is that my test results are showing NO ACTIVE DISEASE, which is a great thing. It makes me think that the ostomy served it's purpose and aloud things to heal in my intestine. I hope that this means that this is just an adjustment period and I will be feeling better soon.

I need to go back to work soon, and that scars me too. I really wish that I could figure out how to work part time for the rest of my life. I am also afraid that if i am ever laid off, I will not be able to afford insurance, meaning that I will not be able to get my remicade or any other help for this disease.

I have also been home sick for so long that I am getting that useless feeling that I know a lot of us Crohnies have felt. I can't help but wonder what the point of my life is if I can't help anyone else or really accomplish anything. Will I ever be healthy enough to be a mom? Will I ever be a published writer? How much of my life is taken over by the Crohns, and how much is being taken over by fear?

There is just a lot on my mind right now. I wish I knew how my life was going to be. I wish I knew if I was doing the right things to keep myself healthy and have a happy life.

 

[CDDad]

Just want to send some good wishes your way. You deserve to feel great again, so I hope a little more recovery time does the trick.

:crab: Throwing the crab in for no reason at all, but maybe to get a smile.

 

[Jer's Girl]

Thanks Joe. I am having less pain today, and I was able to get some food down yesterday and again this morning. So maybe things are looking up. Hope that you are well also Joe.

On another note, looks like a lot of people on here are getting ostomys lately! This just makes me think that more people in general are getting ostomys which in a way is good for the rest of us. Maybe if enough people get ostomys, there will have to be improvements made to the supplies and bags themselves. The technology just has to get better in my opinion.

 

[Jennifer]

How much of my life is taken over by the Crohns, and how much is being taken over by fear?

I can't tell ya but I do know that we all deal with this from time to time. Easier said that done I know but the best thing is to not worry about the "what ifs" and try focusing on what you CAN do now. Take each day, day by day and deal with that comes. The less stress you allow in your life, the easier things become.

Hopefully all this pain you're feeling will go away completely and then you won't have to worry about that anymore for the time being. Glad you're feeling a little better today.

 

[Silvermoon]

I think Crabby offers very sound advise... try and live for today.

A lot of times that is easier said than done... I, too, get caught up in the "whatifs".... Thank goodness I have my hubby around to keep me in the hear and now....

I don't have any other advise to add, but I will give you a ((((((((((((((( Jer's girl )))))))))) and a :rosette2: .... just to let you know I hear you and am thinking about you.......

 

[Jer's Girl]

Thanks Crabby and Silvermoon. You are right that I should try to live in the present and not worry about the future since it cannot be known anyway.

I am doing a little better day by day which is a good sign. Still losing weight which is depressing, but I have been keeping down food so hopefully that problem will improve soon.

Despite the fact that I am still having a bit of pain, my spirits are rising. For the first time I am daring to ask, "could I really go into remission once I get through this healing period?" Since I don't seem to have active Crohn's right now, the answer really could be Yes!!! I have had severe Crohn's since I was 13 and I have never been in full remission. If that is really happening than that means that this all has been worth it.

There I go again, worrying about the future and not living in the moment. It would be better I know to just be happy for what I have now, but it's hard not to dream a little.

 

[Mountaingem]

I think it's just a huge adjustment, after all you've been through, and you have to give yourself some time. I wasn't depressed the whole time I had colon cancer, but after the chemo was done and I got the all-clear, it just kind of hit me what I had just been through. Maybe you're going through something similar...it's almost like I had to learn how to be well again. Plus all the drugs they give us for surgury and pain really messes with us, too; when it's all out of your system you'll feel better.

 

[dreamintwilight]

Just wanted to offer some hugs to you, Nicole! You've been through a lot, and I hope it is still an adjustment for you and you can go back to living your life they way you were with the ostomy

 

[Jerman]

Hiya Nicole, Hope your spirits are continuing to improve and wishing you a symptom & pain free day. Here's a big ole jerman hug for ya (((((((((Nicole))))))

 

[Jer's Girl]

Thanks a lot Mountaingem, Idreamintwilight and Jerman.

Mountaingem, I do feel like I will have to learn how to be well again. Even though this is what I wanted, it is still is a big adjustment. I also think that you are right that I will feel better once I get some of the pain meds out of my system.

Idreamintwilight and Jerman, thanks for your continued support and friendship throughout all of this. Your words of encouragement mean a lot.

 

[mario]

It took me about 3/4 months to get back to reasonable health after my reversal. But from then on i went from strength to strength. Be positive and most importantly DO NOT stress yourself! One day at a time. Don't look too far ahead but try to do 1 thing each day which will help your recovery. Try to force an extra biscuit down, or walk up the stairs and then down again. Honestly small steps lead to big results. Hope to read your book one day. Good luck and don't give in!!!

 

[Jennjenn]

Hi I am glad to see that you are semi doing okay (remission wise!!!!) I can relate and understand to the fears and what ifs. For the weight drink an ensure or an extra boost a day it helps. It helped me after my reversal. I didnt have mine as long as you did (I only had one for five weeks) and it did take as mario stated above a few months to get your system going again. Hopefully everything will keep on going in the positive direction and you can stay in remission! I am soooooo happy to see that they said no active crohns for you!

 

[Jer's Girl]

Thank you so much for writing Mario and Jennjenn! I have been so hoping to hear from someone who has gone through this too. Your posts gave me so much hope. Since my Dr's haven't really dealt with reversals on Crohn's patients very often, they haven't really known what to tell me to expect. All I have heard is the negative possibilities so I have barely dared to dream that the out come of this whole thing would actually be that I was going to feel good after. The most i was hoping for was that I could go back to the way things were a few years ago when I was still very sick but at least I wasn't in the hospital every other month.

I really think that things are starting to turn around for me. I am keeping food down and even getting my apatite back a little. Also, I have had a little less pain before going to the bathroom every day for the last three days! Today was so minor it really isn't even worth mentioning.

Best of all, I am having fully formed poop every day without medication! Only a Crohnie would be this excited about poop but I haven't had poops this good in years! LOL! Actually, I take that back. I think my husband, a non Crohnie, is as excited about it as I am. Every day he wants th hear the poop report, and he gets all excited like a little boy. Thats love for you! Not quite like in the fairy tails, but somehow, having someone to share your poop triumphs with is pretty great.

Today is the first day that I really started to think, "wow, all of this really happened. I got through it and now I might even be in remission because of it!" I am so excited I feel like I could jump out of my skin.

I think I will celebrate tomorrow by cleaning my house since I am finally feeling well enough to do it!

It means so much to me to hear from someone that they went through the same thing that i did and it helped them. I so want this whole experience to have been worth it and really mean something. I was so afraid to hope, but i really feel like i have a good shot at good (hey, I'll be happy with good-ish) health for the first time in my whole adult life.

Thank you all for your support this whole year. It has meant more than you will ever know.

 

[Dexky]

Hi Nicole!! I would say sorry I missed this, but I'm not. I'm glad I read it late and that you are doing so much better. I went from Uh-oh to oh-good in just a couple of minutes. Here's to onward and upward!!

 

[Jer's Girl]

Thanks Mark!

Things continue to get better. I am a very happy girl.

 

[ameslouise]

I am a very happy girl.

So glad to hear you sounding up today!

Hope things continue in the right direction.

xo - Amy

 

[Jer's Girl]

Thanks Amy.

I continue to have bad times during the day, but they are getting shorter and less painful. I am still having daily formed BM's, which is a really good sign, and I an able to leave the house for a few hours a day without problem. I am even eating better. It really feels like my bad days are behind me.

 

[Jerman]

So very happy to hear things are going so well, great to hear you sounding so upbeat! Atta Girl!!:thumright:

 

[Jer's Girl]

Thanks Jerman!

My moods come and go with my symptoms but for the most part every day I feel a bit better than the last physically.

 

[acg101]

Hey Nicole : Its so great to hear that you are healing and getting better every day. Best of all, you are not having the CD symptoms and very little pain.
Cleaning the house is always a sign that we Cronies are back in the groove.. lol!
Take care