Surgery options?!

[LadyVik]

Haven't posted for awhile but I'm seriously at my limit here.
After 5 months of the constant pains,aches, diarrhoea, head aches, migraines, lack of sleep, lack of energy blah blah of a flare I have had enough!!! I am currently on Humira fortnightly and Codeine Phosphate 2, 4 x daily. That's it!! Can't tolerate any other meds as I react badly to everything so my question is Surgery.... I want to know all the nitty gritty details (Only if you are willing to share obviously ) of everything, from deciding to the op to now. Or even if you are going through it? I am only 21 but after 4 years of being in a nigh on constant flare, having no qualifications, no job, no life, no social life, thank the Lord I have my family, I have gotten to the point of deciding this is my only answer now. I have tried EVERYTHING! From meds, to diets, to vitamins, to pro-biotic drinks, to thinking positive, to praying and everything in between! I can't have a re-section as I am "damaged" in too many places so my options? I haven't a clue, I got close to surgery once before on my last bad flare (bad as in had to be hospitalized) but ended up not seeing the surgeon or discussed it much at all, kind of got swept under the carpet as I was progressing with Pred... yeah, like that's a long term thing?! I can't live on that for the rest of my life, I get ALL the side effects so again... surgery! Please reply if you can. Any experience would be helpful. Many thanks!
Vicky

 

[LadyVik]

Just bumping my post Thinking about ringing my consultant tomorrow to try and have chat about this. Probably won't get through and his secretary doesn't even have an answering machine?! So will probably have to try my other consultant?! Grrrr... Any information guys? Spent the day feeling soo low, haven't eaten much but keeping my fluids up All I am doing is crying!
Vicky

 

[Keona]

I would try all the various medications first. I think surgery is a last resort. Im not sure what you are looking at having done if you are damaged in too many places and cant have a resection. What are you looking at having done first?
I think it is a good sign if you are progressing with prednisone, no? How long have you been taking it for? I think it might be helpful if you give a little bit more info.
I hope you find some relief soon.
ya...that is weird that your GI doesnt have an answering service or answering machine... what does he do if his patients have an emergency???? My GI has 2 or 3 numbers... they all have answering machines but one is for appointments, one for the clinical nurse and one for after hours/on-call/emergency type. Does he have another number???
anyhow...take care

 

[Kris]

I hope you get to talk to your doctor soon. The best thing you can do is ask what your options are. If you don't get any answers, get a second opinion. Where do you have Crohn's at? I had my large intestine removed, and I'm glad I did it. That's just me though.

 

[Amc2861]

Hi my daughter had surgery almost two years ago. she just about to turn 13, spent her birthday in the hospital. She had a resection done and has had no trouble in the past two years. She is currently on remicade and 6mp. She had her 6 month check up today and they are considering taking her off 6mp. She was diagnosed at 11 and they tried all the meds but they were not helping so that is when she had the surgery.

 

[social me]

Lady Vik, I understand how you feel I have been ill for 2 yrs finally diagnosed. I dont have any help or advice to give as far as surgery. But, keep fighting and advocating for yourself, educate yourself and don't give up hope. I wish things were better for you I know it gets hard and lonely at times.:rosette2:

 

[LadyVik]

I have tried every type of medication in the last for years including 6mp, methotrexate, remicade, currently on humira, aziro blah blah. I'm no good at remembering names. I meant surgery as in a coloectomy or something along those lines I suppose. As far as I know my Crohn's is not in the rectum, but after there up. I don't know about my small intestine. I don't think we've ever investigated that. I have upped my steriods again but it is having no effect this time. There are not making me feel better at all, if anything I feel worse. Me and my doctor have discussed surgery before but it's never gotten to a serious chat, and he said we will try every option to stop me having it but now it's got to the point where we have tried everything. I don't know what else to try. And I'm sure he doesn't. He was the one who brought it up last time. Thanks for replying though Guess I will just have to keep tying him! :/

 

[sugarbunny891]

I am in recovery from surgery and *touch wood* my life will finally get back to normal. I am two weeks post op today and even though ...im not going to lie it was he hardest week of my life in hospital. I feel great now. Still slowly recovering day by day. I had part of my terminal ileium removed around 30cm. By the way Im f/23/uk also so know what ure going thorugh. I post some pictures on the treatment page of the "wounds" after that u can take a look at. Surgery is not easy far from it and i wouldnt want to give that impresssion. Just think of life withouth those skanky bad bits sitting inside you rotting )))))))) xx

 

[LadyVik]

Hi Sugarbunny. I will go see your pics I think that's what I'm mainly thinking about. My guts all getting grossed up in there. Especially when it's all blood and mucus in the loo Tried ringing the consultant, no answer so will try another number tomorrow and just try and have a chat over the phone and see what she thinks. (She is another consultant at my hospital, and she was there last time we talked about having an op so hopefully she will remember me and all about it, though it was probably about a year agoish) Let's hope things will get better because living on meds, juice, jelly and yogurt is not fun :/

 

[sugarbunny891]

Hi Sugarbunny. I will go see your pics I think that's what I'm mainly thinking about. My guts all getting grossed up in there. Especially when it's all blood and mucus in the loo Tried ringing the consultant, no answer so will try another number tomorrow and just try and have a chat over the phone and see what she thinks. (She is another consultant at my hospital, and she was there last time we talked about having an op so hopefully she will remember me and all about it, though it was probably about a year agoish) Let's hope things will get better because living on meds, juice, jelly and yogurt is not fun :/

Nope its not fun, but it can and will be better

 

[Sha0913]

Hi, I am now 30 but I had my sugery when I was 20, I had 1/2 my small intestine, colon and a part of my rectum taken out, it was the best decision of my life and I had a good 6 year remission until my last child, thats when I started to flare again, so if your that bad then I would consider surgery, I only have a 2 inch scar below my belly button and two tiny spots above and below where they did the lazer to cut, it was one of the best decisions I made then, I don't think I would have had those great years without it. Hope this helps, Shannon