To surgery or not to surgery ...2

[persephone300]

I was diagnosed with "mild" crohns in 2006, although I've had it since about 1999. I've been on various things in the past including Humira, Adilumimab, pentasa etc and most have not worked and given me bad side effects including nausea, headaches and cellulitis on my bottom every couple of weeks.

I was hospitalised last year for three weeks with a bad flare up - and stuck on infliximab. I can't take Pred for too long as I get "steroid psychosis". The infliximab has been working but I start to struggle a few weeks after my infusion and selfmedicate with pred, and have to put up with the nasty side effects. Recently I've been having joint problems. I don't travel well - I panic, and I'm just wondering whether I've had enough.

I'm classed as grossly obese - I don't walk anywhere as it panics me, although I used to love walking and running and things like that.

They tried to sell me the surgery last year, and since, but I have always said no, that most days I am well. I am classified as having "severe" crohns disease. They want to remove the whole of my large bowel due to crohns having infected it all. I do feel too young, at 30 for that - but I'm beginning to wonder of late, whether I should. Whether I could have a reasonably "normal" life if I have it done, do what normal people do, like have a stroll after dinner or go around a park or things like that. Could I be missing out on things because of this crappy illness holding me back. How will I know when is the best time for the surgery. I always knew I'd have to have it, but I kind of thought I'd do it when I really had to. And now, I'm not sure. I want it all to end. Although I'm not in lots of pain, and not bleeding as much as I did etc etc, I just want to be "normal" and to not have to worry about what I do every day.

Can anybody give me any advice?

 

[Jennifer]

Sorry for the late response.

Surgery is best preformed when all other options have failed. If you and your GI feel that all other options have failed then you may need to bite the bullet. Scar tissue cannot be healed by any medication and if you're entire colon is filled with it then chances are your only option is surgery. In my opinion, you do not want to wait until you need surgery because that puts your life in danger.

Since you have Crohn's, this surgery will not be a cure and its possible you will have complications in the future in your small intestine or other areas since it affects people from mouth to anus. Even though its not a cure there are many people who go into remission for many years. I'm currently on my 13th year. I didn't wait until I needed surgery. My GI spoke to me about all the options we've tried and how nothing was working and at the time there weren't any other medications to try so he suggested surgery and I did it. It was the best thing I ever did. Granted it was only a resection and I only had 8 inches removed. With your colon removed you will have a completely different life. If I were you I'd check out and talk to the people in the stoma sub forum found here: http://www.crohnsforum.com/forumdisplay.php?f=46 Although it seems like you already found it. Take care.

 

[persephone300]

Thanks Crabby. Just trying to gather as much info as possible to make an informed choice. I don't seem to be getting any more "well", always thought surgery would be when I couldn't feel any worse, i.e when I couldn't make it in to work etc, but really and truly, the crohns is just affecting my daily life too much at the moment, and although I manage it in to work most of the time, everything is a struggle, and I've just had enough. So surgery, I think, might be best now. Meeting with Gastro and surgeon soon to discuss, so will make my mind up then!

 

[Jennifer]

That's great! Keep us posted!

 

[skippy111]

I waited and put it off untill I needed surgery and it nearly cost me my liffe...

now that I have the bag, I feel like a new man. I love this bag. I am able to go to the store without worrying about having to go to the bathroom and if I will make it without a code brown,

the bag is easy to care for and convienient, no one knows I have it unless I tell em..

they will have to tie me down and force the reconnect on me, im not giving up my bag!

 

[persephone300]

I think I've probably been lucky in some ways, in that I've never actually had an "accident" in all the years I've had crohns, it's just the constant panic and worry that I might, and the feeling that I NEED to go, and the desperation of getting somewhere in time. I'm not sure how much of that is mental and how much is physical, I suppose it's definitely a combination of the two, I'm not sure which it started with though.

 

[skippy111]

well I can tell you, stress and anxiety will trigger a flare up... so in my case, the depression and adhd were like a three pronged attack on my bowels....

when I lived in texas last year and worked in a chicken processing place, just walking into the building and the feel of the cold air of where I worked was a stress trigger becuase with what I did, I had to cut 12 thighs per minute and knowing there was always someone walking around counting (even tho I did 15 a minute) was always on my mind...

Id walk in and sometimes while I was standing in line to clock in, id feel the urge brewing and then had to head for the mens room....

the mental can trigger the physical..

 

[Hobbes650]

With all due respect to Crabby, the concept of "failed" is very subjective. I would like to suggest discussing quality of life issues with your doctor instead of failure. I had my proctocolectomy at age 19, after having been diagnosed with UC at 18. Although the meds kept my fever down for about one year, I would never say that the meds were a success- the quality of my life was very poor. "Surgery as a last resort" is an over used phrase in my opinion, especially if you are tired of suffering. Nobody will ever fault you for choosing to have surgery if you go that route. But you need to weigh the benefits versus the risks. Surgery is scary, and takes a while to recover. But your quality of life can be greatly improved. Before surgery I was so incontinent I would barely leave the house. At it's best, I still would soil my car seats when driving, and that never improved. Bringing a change of clothes with me did not solve the problem- no 19 year old should be forced to live the rest of his life that way. But no doctor is going to judge they quality of your life for you. On the other hand, one can always make up a reason not to have surgery and this could go on for years years. Remember with IBD, surgery means you will be disease free for the moment, and although it may come back you could have many, many years of disease free living. I experienced 25 years. But that's certainly not true for everyone, and why quality of life issues should be discussed.

It's not an easy thing to figure out. But you will know when you are ready.

Best,
Hobbes

Sorry for the late response.

Surgery is best preformed when all other options have failed. If you and your GI feel that all other options have failed then you may need to bite the bullet. ....

 

[Jennifer]

Hobbes650 - If your quality of life has not improved then the medication/treatment has failed. Failed meaning can't get you into remission and may be going downhill even. The point is that you don't want to jump into surgery. All surgery is risky for one but for someone with Crohn's its very common for the disease to become active again and again at the resection site making you more likely to have surgery again and again. You want to try and keep as much bowel as possible unless the surgery is a bag then that's a completely different ballgame. Knowing that, "surgery as a last resort" is not an overused statement but a practical one.

 

[Hobbes650]

Hi Crabby, I ultimately had to have the bag since the internal pouch made kept having problems. Before I had any kind of surgery, there was one doctor saying I wasn't sick enough to have surgery, and another one who said I should think start to think about it. That's why I feel the term last resort is overused. You can always find a reason not to have it. But in another sense, a bad quality of life should suggest you try something else. If doctors are suggesting surgery, it's probably needed and not having it may not do any good.

Hobbes650 - If your quality of life has not improved then the medication/treatment has failed. Failed meaning can't get you into remission and may be going downhill even. The point is that you don't want to jump into surgery. All surgery is risky for one but for someone with Crohn's its very common for the disease to become active again and again at the resection site making you more likely to have surgery again and again. You want to try and keep as much bowel as possible unless the surgery is a bag then that's a completely different ballgame. Knowing that, "surgery as a last resort" is not an overused statement but a practical one.

 

[persephone300]

Thanks for all your comments and feedback, it does really help

 

[persephone300]

I had my flexisyg this week so they can check that I don't have some sort of virus before referring me to surgeon to talk me thru the surgery and then book the surgery date.

It's thrown a spanner in the works because for me, I've been feeling poorlier over the last couple of years, and haven't been feeling great lately - tho on a high dosage of steroids and infliximab. The results came back showing mild inflammation in the bit they checked - which compared to the last report I have from 2 years ago (I'm missing the one from last year), is a lot better - where that colonoscopy showed I had severe crohns thruout the large bowel and very small number of clear patches.

So now I'm thinking, if the insides aren't backing up how I feel - and they have up until now - how do I know it's not just in my head, and I'm being hypochondriachal and don't actually need the surgery, it's really thrown me.

My partner is saying I still need the surgery but the high dose of steroids is just making it look much better - so throwing it off.

I have to wait to speak to my Gastro about it, to find out what he thinks - but what does everyone else think? Do you think it might just be me making it sound worse than it is? I'm doubting myself now. 10 years ago they thought it was all in my head anyway - which I was so relieved to find there was physical signs of something when they finally did look - and it's thrown me off - making me think that if I'd exaggerated somehow unknowingly to my gastro, maybe that's why he's recommended surgery - I'm all a bit askew.

 

[Lisa Marie]

I need some advise I have surgery scheduled in 3 weeks and I don't know what to do.. I am a crones patient in complete remission I am not a typical I actually have problems going to the bathroom because I was told my ilium small intestine has gotten very narrow.. So they want to remove a section of mt small intestine and my appendix.. Should I do it? Can I end up worse than I am? And how big is the scarring on your belly ? :/ so stressed