Feels like someone has a knife to my intestines

[LadyVik]

:sorry:
I have written quite a few posts in the last week but well.. it helps.
Anyway, my background... I've been diagnosed with Crohn's colitis for 3 years this month, and have only had about 1 year in "remission". I'm back to being extremely ill again. I've tried all most all drugs me and my consultant know of including 6mp, methotrexate, Remicade, diet, Prednisolone and many others that I can't remember the names of. But basically at the end of last year my consultant said it's either try Humira again or it's a bag ( I don't know which I would have so I will just say a bag). Anyway, in December I got put on Humira (tried it before and it put me in remission for 9 months) on fortnightly injections, didn't work so got admitted to hospital, back on the Prednisolone, 40mg, had a CT scan and a colonoscopy, every thing was clear so I got boosted to weekly injections which I do at home myself now. About 2/3 weeks ago now, after a few months of remission, I started flaring again, I left it a week then went to see my GP and they put me back onto Pred ( I had weened myself off) at 40mg to see if it makes a difference, so far my D's have gone down but I'm still in very bad pain. They said to ring back today if it hasn't improved to be admitted but I was asleep until 6pm, so missed it. But I have to go back to my doctors on Tuesday to see him so I think I will just persevere for a week.
Anyway, back to the point, I'm fed up with it all and I am thinking that maybe a temporary bag may benefit me?? But I don't know anyone in real life who has had one temporarly. So I was wondering could people tell me about their experiences?? Did it work for you? How was the op? What do they do? How long is it there for? How did it help? What happened when it got reversed? Did you feel better after?
I know it's a big operation and surgery should be a last resort but I've tried everything now and it seems my only option left. My consultant won't do a re-section as he thinks being so young, and the success rate isn't very good, I'm not a very good candidate for it. I'm getting very down and depressed about everything, I just want to be better!! All I seem to be doing is sleeping, I can't eat as it hurts, I'm in constant pain, I have a lot of wind from just drinking water, I just can't deal with it, which is an awful attitude, I'm never usually like this, I'm usually an upbeat person with this, but I just can't stay happy and smiley when I feel like someones got a knife to my intestines and bottom!!
Sorry for the rant and thank you very much for reading.
Vicky

 

[Lydia]

I found a bag a nice repreve from the disease. I had it reversed, I had one bad flare that hospitalised me afterward. Then when I went on pred/immuran and started taking good care of myself, I stayed in remission for years. Before the surgery I never had a remission last for more than a couple months and for the most part I had active disease all the time. So for me I think surgery helped.

Living with a bag isnt so bad. Once you get over the initial stigma of it, its really easy to live. You get the hang of things and it becomes part of your life.

If you are constantly suffering and nothing is giving you a break, it might be worth your while to have a bag for a bit. I dunno if yours would be permanent but even if thats the case, take your time and think about your quality of life.

 

[theend2]

2 1/2 years for me and nothing works for me but prednisone. I have tried everything else except Cimzia because I got denied by my insurance company for cimzia. They stink link this disease. Anyways I am thankful for prednisone even with all that come with it that being the horrible side effects problem is I can not go below 40 mg or I start having bad pain and vomit and blood diarrhea and mucus and dizziness. At 40mg I still have pain but not as bad and the blood goes away and only some mucus and only some diarrhea so I am going to stay on the prednisone and wait for some new biologicals that are coming down the pipe. I am not ready to part with my colon just yet. So know your not alone and keep your head up it will get better soon.

 

[Jennifer]

My consultant won't do a re-section as he thinks being so young, and the success rate isn't very good, I'm not a very good candidate for it.

WAT?!

This doesn't make sense to me. How old are you? I was 17 when I had mine done, I'm turning 28 in April and I'm still in remission. Is it located in an extremely difficult spot or something? Is there too much to take out? I've NEVER heard of the success rate being low or being too young.

 

[Jer's Girl]

I'm about to get the bag so I'll let you know how it goes. Hopefully you don't have to go down that road, but if you do, you wont be alone! Good luck!

 

[LadyVik]

Lydia

Thank you for replying. Actually it was one of your posts, can't remember which one, that made me think about it a lot more seriously than what I was. In my head it was NO BAG as being only 20 and not understanding it as much as I could, but now I think it would increase my quality of life as I have practically no life. And after researching it, it does sound as though my life would greatly improve.

theend2

But don't you just hate Prednisolone?? I can't stand the side effects and will generally refuse it, if I can. I have bad joints, bad teeth, bad skin etc.. from it, gain the weight, have the moon face plus the hot flushes, sweating increases, nearly all the side effects I think. But this time, I have noticed that even though the D's have gone down, the pain has not. I still hate the drug, but my bottom is thankful for the relief.

Crabbyrelish

I'm not too sure, I have asked for this as it sounded the better option, rather than a bag, and asked for it before my courses of Humira. I do know basically from my rectum up, there is Crohn's/colitis, but not too sure how far it goes. I think it is mainly in my colon, so I'm not sure if he's keen on taking away most of my colon, though at the minute, I would gladly let him take it all!! I'm 20, but was about 17 at the time of first asking, and did as again in December. Do you think I should ask for a second opinion on this?? As it does sound the better option.

Jer's Girl

When are you booked in?? Is it permanent?? How long have you been diagnosed? Is it the result of a flare? Where is your disease too? Is there " a lot" of it or is it confined to a specific area? Sorry I have so many questions, but I'm one of those people who need to know all the details, whether good or bad!

Thank you all for replying so quickly.

 

[theend2]

LadyVik,

Yes its a love hate relationship I have with prednisone at this point. I am on 40mg. I have the opposite issue I tend to lose weight when on higher doses 40 and above. I do have issues sleeping and some nights I wake up with anxiety attacks. But it beats having to hang out in the hospital and it beats the idea of having to get a bag. I pray I can avoid that and something new that comes out soon works. I pray you get some relief soon also.

 

[Jennifer]

LadyVik, there is never anything wrong with a second opinion. Maybe you should have another scope done. You said the scope was clear in Dec. maybe there's something there now, I don't know. There's no need for surgery though if everything looks fine.

I don't have enough knowledge about a temporary bag so I have no idea if that's a good idea or not. All I know is that before any type of surgery, they do a scope to be sure that its the best course of action, least they did that for me and I hope that's the case for everyone.

 

[Nyx]

Hi! I have a permanent bag, and it's not bad at all. My surgery was an emergency as I had a blockage and ruptured my sigmoid colon and distended my bowel. My disease is all in the lower section of my GI tract and nothing below my stoma was savable. The surgery itself was a breeze, and even the recovery wasn't that bad (I had very good pain management). My quality of life has gone up immeasurably...just today a friend I hadn't seen in a while said that I look so much better (better colour in my face, well nourished, and generally in better spirits). I'm certainly not telling you to go this route, but if you do, it's really not that bad at all.

Any questions, feel free to ask