Just had first resection - getting back to 'normal'

[Phoenixing]

Just had my first resection. This was also my first flare up. So lots to internalize - that I have Crohn's/colitis, the long attempts to avoid surgery, the surgery itself, and more.

I have begun my conversion into 'normalcy' - whatever that means - I am resting well, doing everything the doctors have told me to, and have begun working an hour or two a day from home. Yet I feel different. It is odd to switch back into 'normalcy' after being in pure-health-related-mode for quite a while. I know that it will be some time before I internalize this and really get back into the scheme of things, and until I understand all of the necessary adjustments.

In the meantime, I figure these forums are a really good place to ask for advice, and to hear about your post-surgery experiences (with a higher focus on the emotional/'living life' angle). Oh, and I would really appreciate any advice/experiences to share re the grieving process for lost internal organs. Your words of wisdom will surely help!

Thanks! :smile:

 

[Fernando1]

Start walking and walking. This will stimulate your bowels as well as invigorate yourself.

Eat lots of small meals of soft foods, maybe 5 meals a day.

 

[Justanothercp]

I know what you mean. I lived for so long with social anxiety because of the sounds my bowels made and need for restroom urgently at times. Also, fear of eating food because I knew I would hurt afterward. After my surgery, It took 6mo to year for me to get back to "normal". I still take lots of meds and have to really watch my diet, but much much better quality of life than before surgery!
Good luck to you.

 

[UnXmas]

I didn't grieve for lost organs. I was very pleased to have my colon gone. I'm much better off without it. A year and a half on from my first ileostomy surgery, and I still appreciate the enormous benefits that surgery has brought me, so in a way I don't want to start thinking about the differences that surgery has had on my life as "normal", I don't want to start taking them for granted.

My last surgery was an emergency surgery which saved my life. That was last Autumn. I was very ill, but I recovered quickly. It has left me with permanent complications, but months of physiotherapy helped me adjust in a practical way. I didn't really have trouble adjusting emotionally. After ten surgeries, "health-related mode" is my normal.

Are there specific things you're having trouble with, Phoenixing, or anything you'd like to talk about? Has the surgery improved your quality of life, or should it help prevent you suffering Crohn's complications in the future? It might be helpful to start thinking about your surgery in those terms. Don't try to block out thoughts about your surgery or illness. It can be scary and horrible, but it's best to try and find a balance - don't ignore it, but make sure you don't obsess about it; don't let it take up too much of your thoughts now that you're on your way to - hopefully - much healthier times than those you've just come through.

Do you have people around you you can talk to? Spending time on this forum will keep your mind on your surgery and illness. But this doesn't have to be a bad thing. Again, it's about finding a balance.

 

[Phoenixing]

Thank you so much for sharing your experiences / advice.

The overwhelming feeling I have is that of RELIEF. This has been an exhausting journey of pain-diagnosis-medications-complications-surgery, but I feel SO. RELIEVED. How can I describe the amount of relief I feel?! (Does anyone relate to relief sometimes being overwhelming, by the way?) Finally, I can relax a bit and internalize and adjust.

I think I am doing great in terms of recovery (I must credit myself - and everyone else here!). Mentally and physically, I am making great strides. Of course, I have some concerns (paranoia over food, waiting for pathology results, is imuran enough?, etc.), but I can deal with those on my own.

The main 'concern' I have - and it's less of a 'concern' and more of a 'it will help me to hear about other individuals' experiences' (in a very 'sharing is caring' kind of way) - is this fear and confusion of 'moving on'. I have gotten so used to being in hospital and health-mode, I just feel like: "wait...there is something other than this hospital life that I need to transfer to?" It is confusing and unsettling. Does this make sense?

 

[SupportiveMom]

Sharing your story can be helpful to you and others. sometimes you don't even realize you are helping others when getting support you need.

I have been in crisis health mode for 3 years with my daughter. I see light at the end of the tunnel in the form of surgery. I welcome the day I can figure out what to do with my time. It's ok to 'move on'. Just don't forget your journey & share how you are a survivor. That's my take on things.

 

[Muppetgirl]

Hi Phoenixing, I can relate to what you are saying (I think!). I think that when you've had a surgery it can take a while to find your new normal. You have been through something intended to improve your situation and quality of life, and you are grateful, yet you still have a disease and you don't know how it will affect you in the coming weeks, months, etc. It's also takes time to leave survival mode which the body literally goes into (through the trauma of surgery) as well as the the psychological survival mode.
You don't have to jump into things, perhaps start out doing just a couple of hours of whatever it is you use to have time for (work, hobbies, friends etc). You might feel like a fish out of water to begin with but it is amazing how adaptable we are.

On the grieving side - follow your gut. It is a very individual thing what your organs mean to you and your relationship with them. If you feel mournful then don't sit on it, just let it be part of your recovery. It is sometimes called disenfranchised grief, because it is not readily recognised socially and in most societies we don't have rituals to support it, like we do funerals for the loss of people. But there is nothing to stop you figuring out a ritual of your own, to help you work through it.

 

[DEmberton]

I don't miss my terminal ileum at all. Bastard thing. Nothing but trouble.

I started doing some work at home a few days out of hospital. Obviously nothing physical, but I found something interesting I could do on the computer and I think having something mental to do helped take my mind off everything else.

Being able to eat properly was the main thing that made me feel normal again.

 

[UnXmas]

How long were you in hospital for, Phoenixing? I've found that when I've been in hospital more than a couple of weeks I get a bit "institutionalised". ( http://en.m.wikipedia.org/wiki/Institutional_syndrome ) Being at home again feels strange.

But you should just need time to get back to normal. Most people with Crohn's live perfectly normal lives. You'll probably have episodes of ill health. At the time they'll be major, but when you look back later they'll just be blips. Crohn's is not the type of illness that will prevent you having a life outside illness. You may have to deal with symptoms on a long term basis, maybe regular doctors visits. But these won't be like having the surgery, you should find you will come to see them as part of your life; they'll be included in your "normal".

 

[pacealot]

I can relate in my own way, as I will be finding out in a week or so if my GI doc plans to follow through with at least a resection, if not a whole colectomy, following the discovery that what I thought was UC is in fact Crohn's. I'm a very negative-seeing person by nature, unfortunately, so I tend to foresee the worst-case scenarios. In this case, it's a permanent bag, no chance to get off the Humira and mercaptopurine cocktail that I believe is sucking the energy out of me day after day, and the certainty of regular worsening of my condition, new flares, new places for the disease to attack, etc. I've somewhat accepted this scenario, so I'm not sure how I'd feel if things ever turned out better than that. I honestly don't think I'd know what to do with that.

Normal life? I don't know what that is any more. I've been jobless for almost exactly a year now, and I can't imagine anything I'll be able to do in the future, surgery or not. I've managed to stay out of hospital since last summer, and I dread getting stuck in there again, but I've come to accept it as inevitable, one way or another.

I had my gallbladder removed in October of last year, and I don't feel that I grieved for it at all (it was causing me semi-irregular unpredictable pain as bad, or close to it, as the worst pain I've ever had in my life including my bowel perforation, so I too felt more "good riddance" than anything). But I don't know how I feel about losing most of or all of my colon yet. I guess I'll cross that bridge whenever I come to it.

 

[rorho19]

I am possibly close to crohn's surgery - been reffered but have previously had discectomy for badly slipped disc. I did not mourn at all for what they took out..never even thought about it ..was just so grateful to be rid of he terrible pain I had suffered for many many months.(years really). I quickly got back to a 98% normal life ..work, family. hobbies..just have to be a bit careful about heavy lifting etc.

it was only a couple of years after that I got dragged into "medical mode" by crohn's.
I am hoping that if I soon have resection that after it I will get back to a more normal life which there seems a point to and some things in it that I can enjoy. The last four years have be intermittent nightmare in terms of a worthwile or enjoyable life.


I grieve for the life I feel that I have lost and don't know if I believe it will ever come back.

rorho19

 

[Bufford]

I fought depression for most of my life and had colostomy surgery after experiencing a major anal abscess. They took out part of my colon and a length of small bowel along with my apendix, and at first all I wanted to do was die. All these tubes coming out o my body, I was a plane wreck.
As time went on and strength came back I thought about the boiler room at work. In one plant we had the entire make up water system removed and old boiler had to take in municipal water straight up without treatment which is hard on them, but they will still operate.
Kind of like me, there's less of me inside to process food into energy like the boiler turning water into steam, but it works. My lights are on, and life moves forward albeit often slowly. The main thing is I wake up in the morning to see another day. Feeling better, and now lived long enough that I have no worries life it pretty good. The surgery was well worth it.