Hi i'm new and i was reading thru the messages and i guess i'm looking for some advice. My fiance had UC and had his colon removed on Dec 19,2007 and his reversal is scheduled for the 19th of this month. I met him four yrs ago and one of the first things he told me was that he had UC. I, as most girls in my situation, researched and learned as much as i could. We're gettting married Sep 13, the date is tentative as it all depends if everything goes good with the next surgery. He had a lot of complications the first surgery. He was in intensive care for two weeks. I was there on the weekends as we live in different towns. He was so high on the morphine that he doesn't remember much from his hospital stay. I've noticed that after being released and having the stoma and the bag he's gotten a bit different. He sleeps a lot and he's very self conscious about himself (i cant blame him though as i know that he's going thru a lot). But even when it comes to our relationship he's just kinda stuck. He doesn't really wanna talk about the wedding and he's not so lovey dovey as he used to be. It's hard to just get him to speak about how he's feeling or about us. What can i do to help him and at the same time help myself? i have a lot of days that i feel like no matter how hard i try to show him love and support it just doesn't help. i feel like he feels like i'm nagging. for the girls who have gone thru this: will he go back to how he was or is going thru this whole process going to change him.

i guess i'm just trying to know if maybe he just wont be as expressive as he was.

thanks!
ncm84

ncm84
Hi There
Its sounds to me like your partner may have a bit of depression following his surgery,it is a major change to their life and takes some accepting ,you sound like you are very supportive and thats what he needs right now ,my husband went through depression and needed to take anti depressants for a while maybe he could do with some counselling to adjust to his new life situation,does he have a stoma nurse you could talk to and your general doctor can help if he is a little depressed.Im sure he will gradually adjust and wish you lots of luck,just give him time
Kennies wife

thank you so much for you reply. i will definitely see if maybe we can speak to his doctor about it. i actually do think that he's going thru a lil bit of depression, but who can blame him, he's going thru a huge body change. he's 23 which makes it even harder. him being so young and he's such an active person so now since he has the stoma and the bag he just cant be as active as he was.

i just feel sometimes like no matter what i do and how much attention and love i give him its not enough. plus the fact that we're supposed to be getting married in september and all this planning stuff which i've had to do all alone. i just feel sometimes down cus i have no one to vent with or no one to understand me. i'm constantly putting all my needs aside just to make him feel loved, comforted and with support him cus i know he needs someone there for him. these past three months have been hard. we're both counting down the days til the reversal surgery.

thanks again

I just read this and felt i should reply. i just turned 20, so i am kinda in the same age group as your fiance, and i just had my last surgery in january. so i know what he is going through to some degree. after i had the first surgery, i got really depressed and down about life. i mean, it really stinks to have this bag hanging off of you. i was really active before as well, so when all of the sudden one day, you cant even stand up without feeling pain and being uncomfortable, it really throws you for a loop.

but the one thing that really helped me through it was just having someone around.i had this friend who would just come and sit in my living room with me a couple nights a week. we wouldnt even talk most of the time, just sit there and watch tv. So i guess that is my suggestion to you NCM84, just be there for him. i hope everything goes well for you, and good luck with the wedding.

my husband was 50 when this happened to him,which was a bad time for him getting old was bad enough but the stoma bag was just too much to bear.It took a long time and a lot of support from me and your man is so young,bless his heart,but i do feel for you too cos i know what you are going through,and u must be young too if you both survive this i think you will have a long happy marriage (we have been married 41 yrs)be strong and stay there for each other ,but get some help for him,and i wish you so much joy for your wedding,he is one lucky young man to have you but beleive me this will make you stronger,and there is always someone here on this site to help you through so keep in touch,
wishing you both some happiness
Kennies wife

Hi,
I know what you are going through. My boyfriend is 22 and I am 20. He had his first surgery on Feb.7 and had complications after that. He finally got to go home after 8 days and 6 days later he was back in the hospital. He stayed that time for 6 days and was admitted back into the hospital 5 days later. That is where we are now. They are doing all the tests to see if he can have take down next Tuesday due to all the complications. I know what you mean by showing a lot of love and receiving none. It is hard to go through this and the person you love is not helping you through it. If you ever need anyone to talk to feel free to private message me and then we can e-mail each other.

Give it time. He will get better and this will all be past.
He has been very sick and it will take time to heal. He will feel better and so will you.
Hang in there, even if he isn't showing love, he has it and right now he can only think about himself.The wedding is probably another stressor with all he is going through. Stress always makes things worse.

Lisa24,
i know what you mean about the complications. alexis was supposed to come out of the surgery and be an hr in recovery, he was actually in recovery for six hours cus his blood pressure was up teh roof and the pain was unbearable. then he was in intensive care for two weeks after that. his hemoglobin level was almost at the floor and he was just not getting better. i found myself in the hospital every single weekend. i couldn't even call the hospital cus i wasnt on the VIP list at intensive care. his family said he didnt wanna see me and made it hard for me to even see him when i would drive over. the best thing that i did was stay there. even if i was sitting in hte waiting room i was there. that's one thing that i can say about this whole thing, yes it's been hard but i've been there for him. there's not one day that i'll tell him i dont wanna hear it or that i dont let him vent. it might be hard on me cus i had no one to speak to until now but i was always there. no matter what time day or night.

i hope your boyfriend is feeling better.

NCM84,

It sounds like your heart is in the right place and you are really trying to help him. I think the thoughts others have shared about possible depression are right on. He is going through a difficult physical experience, and is also having to deal with some serious life changes. Life changes require us to "grieve" what we are losing and accept the new reality of things. That's a hard thing to do when you have a bag of poop on your stomach

Also, your feeling that you think he feels like you're nagging is probably right on. It sounds like you are trying soooo hard to help him feel better through this (because you love him), but in doing so you may be putting pressure on him to "feel better." With everything else he has to deal with he probably doesn't want to have the pressure of feeling better when he doesn't have it in him right now. Does that make sense?

So, my advice is to just be yourself. Lose some of the outward, verbal concern for him. Be there if and when he wants to talk. Love him unconditionally. Accept that he is feeling crappy right now, and believe this is a season of life that will pass for you all.

Now, that said... I know it can't be easy. You all are going to get married! You want him to be happy and excited. I would want that too if I were you.

If his takedown surgery is in March, let's see... that leaves 6 months for him to adjust to things. He might be feeling pretty "normal" by then (hopefully) but that's probably the minimum amount of time to expect that.

Truthfully, if you want his participation, help, and excitement about the wedding (if it's really important to you and it should be), maybe September is too soon? Something to think about. I don't know how far down the road you are with it.

You all will be fine. He will get better. He probably just needs time.

Oh - and both of you may need someone else besides each other to talk to through this. It was tough for my wife and I.

NCM 84,
It is really encouraging knowing there are people like us out there, who struggle with very similar situations.
I'm too a girlfriend, whose boyfriend had UC, had a j-pouch, and now has a perm. ostomy bag. We are in our late 20s, early 30s ... We've been together for 1 year and 4 months. Scott had his last surgery almost 6 months ago ... and things have been hard on him, and on me as well ... I'm just crazy about him and could not bear the idea of not being with him ... so I stuck to him, even when I did not get anything in return ... I held on to my memories, and how loving he was before ... I know I sounded nagging many times, and still sometimes.
Try to show him you are there for him, but also give him time, quiet time ... he'll probably need sometime to be alone ... this was extremely hard for me to understand ...Talking might not be the best thing to do at times.
The wedding could be very overwealming for him right now ... don't rush things, take it easy ... he will come back, but it will happen slowly ...
We are all still learning how to deal with this situation.
Hang in there and take care,
Lilian(Borboleta)

hi there. well my fiance has his takedown on wednesday. he'll have his ostomy bag removed which he's very excited about. hopefully everything goes well. i, as always, will be there during the surgery. cant wait to see how everything comes out. i've had some pretty bad days lately. im feelin a bit overwhelmed, a lot of sleepless nights and crying to sleep. wedding has been pushed back from september to december. no final date yet thought, we're waiting to see how everything with the surgery comes out. i'm kinda glad we pushed the wedding back though cus i'm kinda lacking that future bride glow and excitement right now. i thought i was ready for all the ups and downs we would have with him having the surgeries but what i read doesnt really prepare you for what you feel. as the girlfriend looking in, feelings wise its crazy. im on a one seater emotional rollercoaster. i feel selfish for worrying about my feelings and for crying and sometimes for expressing my feelings. he's going thru so much and all i can do is be there for him when he needs me. thru his pain, thru our "silent" talks, thru his "not feeling loving" moods. i'm there. but there's no cure for my lonely nights, hurt feelings, crying, or my pain. all i can do is pray for the better and for him to be ok and healthy and happy. i have great and happy memories to look back on and look forward to. i'm not gonna lie. i miss him and how he was. i sometimes feel like im getting to know this whole new version of him and i wonder if he'll be that way later. i love him so much. i would do anything for him just so he can be happy. he's the greatest thing that ever happened to me. i just have to keep repeating to myself "our love is strong and we'll get thru all this".

sorry for those who read this message. i just needed to vent a little. i have a lot of stuff going on.......

You really are going through a rough patch arent you my heart goes out to you having to go through this and so young too,i really do understand what your life is like right now i have been going through this for so long myself.I think you are right to put the wedding back a little because you should be feeling the radiant bride to be and you cant when you have your boyfriend go through all this,but hang on in there,be strong for both of you and look to the future and as i said before give him time to come to terms with his health issues he is going through major traumas at the moment and he is very young.Good luck to you both and keep venting your feelings on here it will releive some of the pressure on your young shoulders
regards Kennies wife

NCM
good luck for wednesday be strong for each other
regards
Kennies wife

Hi NCM,
I thought about you and your boyfriend today. Hope everything went well. Let us know how things went.
Feel free to vent anytime you need ... this site is here for this purpose as well. A lot of us understand what you are going through, cause we've been there or still there.
Be strong, and persistent.
Lilian

hello everyone.
I just wanted to give you an update on Alexis' surgery.
He went in yesterday around 5.30 for surgery (well it actually started around 6 cus they needed to give him the anesthesia and stuff). He came out fine. The surgeon said that he would've actually waited another 3 more months to do the surgery cus his intestine was really fragile. He said that due to all the steroids and medicine he had been on it had all made his intestine be very fragile. (is that normal, for those who have been thru the takedown or their loved ones had) But he said he shouldn't have any problems. I was there all day yesterday with his parents and my dad. From early in the morning and i got home around midnight to wake up early today to go to work. Since i live about an hour and a half away so im dead tired. I barely got sleep cus i had the phone next to me all night in case he needed to talk, which he did, around 2am. Thankfully though i talked to his mom this morning and him as well and he's doing good. They were gonna have him walk today and in about two days try to feed him. With god's help everything should go smoothly and my baby will be able to recover as he wants.

i would like to thank you all for your support. you have all given me so much strength and even though i dont personally know each and every one of you i consider you all my friends and people that i can turn to. i will surely you keep you all updated as me and alexis go thru his recovery.