Need some help ive got to have surgery

[Charlene]

Hi, im Charlene, 25 female from uk, this is my first ever post but i believe someone can help me, well i hope so?
Iv been diagnosed with crohns (small instestine) for 3 years, have been getting very bad flare ups for several months, tried prednisolone for the 2nd time, didnt really work & messed more with my head. Im now seeing the surgeon tomorrow to book me in for my first resection operation & im sooo scared ;,(
Can anyone tell me what to expect? Im worried im going to have to have a bag which terrifies me ;,( the consultant said ill only need a bag if something goes wrong & itll be temp for 12weeks but i dont know if ill be able to accept it ;,( im so scared ;,( & what worries me the most is me & my fiance are trying for a baby & im worried i not only wont be able to have sex after the surgery for 3 months but my fiance will leave me because i have to put our future on hold!! Im sooo scared that the surgery will make me worse & i wont even be able to go tesco let alone go back to work ;,(

Please can someone thats maybe had this surgery give me some advice?

Many thanks
Charlene Uk

 

[Emily]

Hi and welcome
I had the same bag fears, but if your surgeon knows what he's doing, you should have a low chance of having an emergency bag.
After the surgery, you will have low energy and be tired and a bit weak from all the healing and little physical activity. But for me, I snapped out of it when I got home from the hospital, took the pain pills, took myself on walks around the neighborhood and just relaxed and healed up.

And to answer your question, I was ready / up for sex about 1 months after my surgery. My bf said no for a while though cause he was worried about me.
The surgery will not make you worse. For so many on here including me, it was a miraculous improvement in quality of life and I could never regret it.
Welcome to the forum, I hope more people come along with some answers for you!

 

[Jessi]

Hello Charlene, and welcome to the forum.

I understand your fear, but be brave, sweetie. The goal of the surgery is to give you a better quality of life. Focus on that if you can. (I know... easier said than done, right?!)

Feel free to read what others have discussed in the Surgery Sub-forum in the Treatment section. Maybe you can find some extra comfort from there.

And Charlene, I am praying that your bf actually loves you enough to understand what you're going through, and that he needs to be patient with your healing process. :hug: There are a lot of very supportive men out there. I really hope he is one of them. Heaven knows, you need it.

Hang in there, love. I hope all goes well for you. Keep us posted on your consultation tomorrow.

 

[maggi]

Hi, im Charlene, 25 female from uk, this is my first ever post but i believe someone can help me, well i hope so?
Iv been diagnosed with crohns (small instestine) for 3 years, have been getting very bad flare ups for several months, tried prednisolone for the 2nd time, didnt really work & messed more with my head. Im now seeing the surgeon tomorrow to book me in for my first resection operation & im sooo scared ;,(
Can anyone tell me what to expect? Im worried im going to have to have a bag which terrifies me ;,( the consultant said ill only need a bag if something goes wrong & itll be temp for 12weeks but i dont know if ill be able to accept it ;,( im so scared ;,( & what worries me the most is me & my fiance are trying for a baby & im worried i not only wont be able to have sex after the surgery for 3 months but my fiance will leave me because i have to put our future on hold!! Im sooo scared that the surgery will make me worse & i wont even be able to go tesco let alone go back to work ;,(

Please can someone thats maybe had this surgery give me some advice?

Many thanks
Charlene Uk

Welcome to the site Charlene, the only surgery i had was for some seton because of the abcess and filtulas, but next week im having a colonoscopy and there is a lot of chance that i will need surgery. Im very scared to, but people keep telling me that the disease is easier to control after that, wich i hope so. The only advice i have to give you is if you are trying to get pregnant i'ts better if you crhon is well control, because 2 years ago i was pregnant and became very ill ( because of crohn) that i had a miscarrage. And it took me a couples of months to get a lot better. And i think that if your fiance loves you and wants you to get pregnant, the 12 weeks a worth to wait. You have to stay positive. Take care

Maggi

 

[archie]

Hi try not to worry I have had the same surgery an I too had the same concerns as you. It is a very slim chance you will require a bag so don't stress about it. Like most people I have had a very positive outcome from surgery. The first week was the hardest but I was back to most activities I month later. It is only a short period of your life and if your fiancé is supportive then he will not mind waiting a couple of weeks. It will hopefully get you into remission and like everyone else has said improve your quality of life. Pregnancy should hopefully fall into place in the future when you are fit and well but concentrate on getting yourself better first. Check out some of the success stories on this site and remember the surgeons know what they're doing. If you have any questions about the surgery just ask. Goodluck

 

[hayper88]

Hi Charlene,

Here goes my first post! I feel that I can absolutely relate to you. I am a 23 year old (single, however) female and just had my first ever resection surgery (laproscopic) 2 weeks and 1 day ago. I have Crohn's in my small intestine, specifically my terminal ileum. My surgery was a huge shock and scheduled immediately after my MRI showed perferations, fistulas, and a stricture. I was so upset, scared, mad, everything you could think of. I too faced the option of a bag, a 50/50 chance, but did not require one. As previous people have stated, there is a very low chance of needing an ileostomy...the surgeons these days do everything they can to prevent that! If you are like me and still worried about the chance of waking up with a bag, I would suggest reading the some of the posts in the stoma subforum because a lot of people with stoma's have a very positive outlook and positive/mind calming words. Think of the bag as a life-saver. And of course I said "I can't handle that" and my family told me "you will handle it if you have to".

As for the surgery, it is pretty major surgery so you will be in the hospital for about a week...they say 5-7 days is the norm, and I stayed for 7 days. The first few days you will not eat or drink and you are sore but able to get out of bed for short walks, which are encouraged. During my stay, I experienced an NG tube, oxygen, a blood transfusion, and a barium enema x-ray. All of which sucked but when its over, its over. I really barely remember being in the hospital. Basically you are in the hospital waiting for your bowels to "wake up". Walking and chewing gum are suggested since eating is NOT. For me, the barium enema got things moving. I moved on to a liquid diet on my 5th day and a low residue solid food diet on the 6th day. By the 5th day I hit a turning point where I started to feel better and able to care for myself. The first two days out of the hospital I rested a lot, took my painkillers, but made it outside for short walks. Now I am done with the painkillers and have been out shopping! Still get exhausted and need naps/go to bed early but am feeling "normal". I know you are worried about putting your life on hold, but this is just a little glitch. You will not have to put your life on hold, (maybe just 2 weeks at most) you will just have to continue on your life in a slower fashion. I am shocked at how good I am feeling considering my surgery...I had a mess in my abdomen! This is so hard. I know. I was barely functioning from the time I learned about my surgery until surgery. I already feel better. Not perfect, and I don't know if everything is "fixed" but I am very happy and thankful that I did this surgery.

Feel free to e-mail me if you have any questions ([email protected]) I know I had a TON.

Take care of yourself,

Emily

 

[Charlene]

Thank you all for your messages of support
I saw the surgeon this morning & i did not get a good vibe from him, hes made me more scared, more anxious, more upset, but my mum & bf think im being ridiculous! Iv tried to explain to them they dont know how i feel as they are not going through this! Another problem im having is the hospital i have to go to, iv had very bad experiences at that hospital & now the surgeon i saw at that hospital has not made me feel calm or relaxed, i dont know what to do?! He also told me he will be cutting me from my belly button down, now not only does the bag scare me but now having a massive scar at least 10cm long scares me ;,( i feel very alone in this ;,( my mum & bf dont understand ;,(

Do i go for the surgery that the surgeon i get a bad vibe from that cant "pencil me in" til 30th jan even though he can see im in agony??
Or do i just go on a liquid diet & try to ease the pain myself?

Help? ;,(

 

[ekay03]

Hello Charlene and welcome, certainly I think you should talk to your boyfriend about your worries. About the surgery. I was also worried about having to wear a bag. Charlene, I won't lie you it's a big surgery, and afterwords there will be a lot of pain, but they will give you plenty of pain medicine. I was in the hospital for about a week after my resection, but the pain from the Crohn's disease was gone. This was the first time in 10 years I was pain-free. It was only this year that I started getting pain again. I had 10 very good years is pain free. I know I didn't offer you any advice but as you can see many times these things work out. I am glad I had the surgery.

 

[homeschoolmom]

Hi Charlene. I had the same surgery in 1999 that your surgeon is talking about. I ended up being in the hospital 13 days because the Crohn's was so severe that I had blockages and could not stop throwing up every few minutes. I waited three days in the hospital for my surgery because they wanted to get my guts settled down and needed to be sure I was cleaned out. I am now at the point that my GI doc thinks I may need another surgery and I am scared too. I will tell you that if you catch this early enough you may not have to lose a lot of your intestine. Mine went undiagnosed for years and I ended up losing 1 1/2 ft. of my small intestine in two sections. I also remember that my surgeon was arrogant and when I mentioned it to my GI doc he told me most surgeons don't have a good bedside manner, then he told me that he was the BESt in my area and he would not have sent me to him if he wasn't. i questioned him about everything, I annoyed him to the point he yelled at me and I cried, but the first thing after surgery I remember asking if I had a bag and he said no. To my embarrassment when I came a little further out of the anesthesia I remember telling him I loved him and thanking him! LOL, the guy was obnoxious, but he knew what he was doing. I have learned a lot for this DD, mostly I learned that I have to stand up for me because no one else will. Hugs to you, I can empathize.

 

[archie]

Why are you getting a bad vibe from him? Do you think that it's a personality clash or he's not listening to you, point is these guys are really experienced this is there day to day job and they know what they're at, try not to get yourself worked up although ur mum and bf don't understand they do sound as though they're trying to help. You are very anxious about this up coming surgery so maybe you need to talk to someone about it like a nurse or your own GP. Ask lots of questions here but keep in mind the reasons why they want to operate is to get you better not worse, it's nAtural to feel very nervous, I was petrified but I did trust that they knew what they were doing and I had no option and as someone else has mentioned, after the surgery I felt 'normal' again.