First operation - terrified !!!

[Hendaz85]

I was diagnosed with Crohn's disease in 2008. I initially took pentasa until l had a flare in 2011. Since then I was put on azathioprine, tried infusions and was then put on Humira injections until a recent flare in April this year. I have now exhausted all options and due to have surgery to remove the diseased part of my bowel which is in the terminal illieum. I am currently on 40mg pred and I am unable to taper the dosage down as I experience to much pain. I have now been told the risks durin the operation will rise because of this. god I wish I never had this awful disease. Has anyone had anything similar ? If so did being on steriods affect your recovery time ? How long do you think the recovery time will be ?
Any advice or help would be appreciated xx

 

[Pointy_ears]

Hi Hendaz, I had a pretty major operation on my terminal ileum around this time last year and I was on IV steroids for about 3 weeks before the operation. The surgeons were more concerned about sterilising me with antibiotics rather than the effects of the steroids because I had a perforation, abscesses and a fistula to the bladder. I was in hospital for two weeks after the operation. My consultant and his team wanted me home sooner but I asked to stay in a bit longer as I didn't feel ready to leave.

The main factors that will have an affect on your recovery time are how far the disease has spread, what the scar tissue and adhesions are like and whether they've managed to keep you well hydrated and well nourished before the operation. But ultimately it will come down to what they find when they're in there and what they have to do.

The important thing to remember is not to try and rush your recovery, your body will heal at it's own rate in the time that is right for you. My consultant was really good at managing my pain and my expectations and regularly gave me updates on my blood work, test results and dropped by to assess my general fitness and some times just popped on to the ward to have a chat with me outside of the ward rounds.

My experience of surgery was quite good, I hope your is just as good and you have a speedy recovery!

 

[Hendaz85]

Thanks... Glad your surgery worked out for you.

I have been told that due to where the crohns is I have to have part of my large bowel removed and appendix. I think this has caused more anxiety as its a lot more than what I first thought. I am just a big softy really.

 

[Pointy_ears]

You're not being soft at all any kind of surgery is scary especially when you've been feeling ill for so long! To be honest at the time I had my operation I would have practically had a break down if it wasn't for the nurses and doctors looking after me.

Has your consultant told you what to expect post-operative, talked through your pain relief and what they can do to help you recover? Both before and after my operation I had the senior registra sit down and do a recovery plan with me. It really helped me to focus and stay positive.

 

[Jennifer]

In all I had 8 inches removed of my TI and Cecum (also removed appendix). I was also still in a flare when I had my surgery so was still on Prednisone. I didn't have any problems with my intestine healing back together but the opening on my abdomen did have a hard time healing properly due to the steroids. On the night of day 7 (the day I was sent home) I started vomiting in the night. The vomiting continued into the morning where my incision broke open. The muscle layer had healed but not the fat layer and skin (some of the skin did heal on the sides but not the center). I went to the ER where they ran some tests and cleaned me up, gave me anti nausea meds and pain meds and then sent me back to the hospital where I had the surgery. While there the skin layer that had healed was cut back open, the wound was cleaned out and it was packed with moist gauze and bandaged so it could heal from the inside out. It had to be cleaned and packed twice a day which took about a month or more for the incision to fully heal.

Now all that may sound horrible but that doesn't mean that the same thing will happen to you. I had a nice long 14 year remission after my surgery and hope that you'll go longer than I did. Good luck and keep us posted.

 

[nogutsnoglory]

It's completely normal to be nervous and scared during this time your life and when you have an operation of any sort. I think that the amount of time for recovery really depends on the extent of the resection and if there are any complications but generally it's about 6 to 8 weeks.

During my ileocolic resection I found that after two weeks I was really motivated and able to walk around and resume life to a fairly normal extent and that's atypical but it just goes to show that everyone is different. Hopefully you'll recover really quickly and live a life without pain and be able to put your disease behind you at least to some extent. I wish you the best of luck with your surgery.

 

[Axelfl3333]

Any surgery is scary I,ve had umpteen hand and elbow ops all fairly minor but scary.
Congratulations your normal hope everything goes well and you get peace from this annoying condition for a long time

 

[Hendaz85]

I haven't really been told much post-op although they expect me to be in for a week. I am having my pre op soon so hopefully I will have more informations then.

Jennifer-what your describing sounds terrible. I am hoping that's not the case for me. So glad you got it all sorted though.

And thanks all for your kind thoughts. It really is an awful disease. It's nice to talk to people who understand

 

[highlandsrock]

Hello Hendaz

I know what you're going through. I felt the same about surgery and did everything to put it off. When it finally became inevitable the thing that really helped completely change attitude from scared to incredibly laid back was opting to go on an Enhanced Recovery Scheme. One of the main elements is the pre-operative assessment, planning and preparation before admission which means you know what should happen every step of the way and you have a single point of contact who is in overall charge of your care.

There's also a structured approach to the immediate post-operative care, including pain relief, and they get you on your feet as soon as possible. I had 15cm of terminal ileum removed and was expected to be in hospital for 7 days. I was actually in there nearer 2 weeks because my digestive system went into lockdown for a few days. I had an epidural for the operation and suffered very little pain afterwards. Once the epidural came out it was simply down to Paracetamol when needed.

Are you taking someone with you to the pre-op meeting. I was accompanied by my wife so she knew as much as I did about the process. I also made sure I had my list of questions written down. Good luck with the operation. Is it soon?

 

[Hendaz85]

Hello highlands rock.

When I had my MRI it showed inflammation and a 4cm stricture, however due to where it is I will need about 15-20 cm of the large bowel removing and as I said appendix. I am due to go in for surgery on the 19/08. So not long now to wait.

I haven't had an epidural mentioned ? I wonder if its something that is offered to me?

Good idea about list of questions and my mum will come with me. Everything I have Been told so far seems to go in one ear and out of the other and then I think of things when I leave.

 

[Ribo]

Hello highlands rock.

When I had my MRI it showed inflammation and a 4cm stricture, however due to where it is I will need about 15-20 cm of the large bowel removing and as I said appendix. I am due to go in for surgery on the 19/08. So not long now to wait.

I haven't had an epidural mentioned ? I wonder if its something that is offered to me?

Good idea about list of questions and my mum will come with me. Everything I have Been told so far seems to go in one ear and out of the other and then I think of things when I leave.

Don't be afraid to ask questions beforehand, as many as You feel you need to ask. And don't just let an answer go if it wasn't clear, confused you, or didn't really help you understand. You're the patient -it's important that you not forget that and don't let the caregivers forget it either

My hospital experiences, while not at the same level of procedure, has generally been that the nurses, techs, and doctors genuinely care and want to help, but you need to do your part. Ask questions, ask for help, don't hesitate to call them for any assistance.

Hang in there, nothing wrong with being anxious or scared. Communicating that to your medical team can also help!

 

[Pointy_ears]

I'm going to second what Ribo has said! We can all tell you about our experiences but your ops is going to be unique to you. If you're ever feeling uncomfortable or need anything at all clarifying it's time to be asking the doctors and nurses questions.

I found it helpful to write everything down in my phone before I met any of the doctors, that way I could just jot questions down as I thought of them instead of racking my brains later thinking of everything I wanted/needed to know.

 

[cdavidson52809]

I would make sure you have someone with you to help remember things, ask questions and just be an advocate for you and your wants, needs and overall health. I think it is normal to be scared. It took me 4 plus months to heal but I had some complications. I was in the hospital for 3 weeks after surgery.

 

[deb123]

Hi,
Wishing you all the best for the 19th. I had TI and appendix removed about 7 years ago. It is a big op, and like you I was terrified, I actually got to the stage that I was done with worrying, the stress before was sapping all my energy, but I'm glad it was done. After the initial stay in hospital and time recuperating at home I went from strength to strength.
Please do ask about short bowel syndrome though. I wasn't warned of this, and it did hamper my initial recovery. I know have to take Questran daily to combat this, its no problem, and not everyone has this, but I wish I was forewarned.
If anything time in hospital is boring, so takes lots of things to wile away the recovery hours. x

 

[highlandsrock]

...and take an iPod and some headphones to drown out the general noise if you're in an open ward

 

[Pointy_ears]

...and take an iPod and some headphones to drown out the general noise if you're in an open ward

Especially for the night when you are trying to sleep!