So annoyed!!!

I emailed my Gastro nurse yesterday about the pain I am getting in my colon. To update I am on a pred taper after contracting food poisoning and it flaring my colitis.

My last blood test last wed showed a CRP of 1 so no active inflammation in my blood and bowel movements are 1-2 a day will formed stools but are getting softer the past few days and gassier.

The colon pain has worsened since tapering from 25mg to 20mg. In the past it has not been uncommon for my CRP to be low but stool sample showing high inflammation. This is what I believe is the case now.

I have started back on 27.5mg pred and already pain has subsided indicating to me that there is still inflammation.

Well the nurse on one hand is saying now I am in therapeutic level witch imuran it can take a further 4-8 weeks to work and on the other hand is saying if it doesn't work they will consider surgery?!! Well I got really cross at this as there are so many other options to try before surgery. I have never even taken a biologic yet! And my symptoms other than pain are non existent. I'm not going t the toilet 20 plus times a day, not even at the height of my flare ups as my colitis is classed as mild. I am not even bleeding.

So why the hell scare the hell out of me and suggest surgery???

I think you should give Remicade a try before doing anything. Also the wording "they consider surgery" like wth? YOU should consider surgery first of all. Not them.

I really hope you get better soon.

Happychick, you seem to know your treatment options and what to do next, so no worries. I believe a lot of GI's start mentioning the word surgery in order to get you thinking about it, so if you do need it later (wrapping your head around and coming to terms with that possibility is difficult for most). The good news is 75 percent of uc patients do not need surgery, and you are right about biologics (remicade, simponi, humira) try them first if needed. Medical professionals aren't the best with subtlety and tact by any measure of the phrase...

That stinks. I think you will be able to get Remicade. It sounds pretty severe to me if you can't taper down past 25mg of pred without having symptoms. There is a point where you have to let go sometimes and be patient. Just because things see bad right when you taper doesn't mean they are going to get worse. I think the nurse is right, imuran can take some time to work, but it's not guaranteed to work. This illness is the worst. I am sorry.

Happy Chick,

I feel you on this. I think that word, 'surgery,' is thrown around way too freely. Like, oh, be glad you have UC because you can "just" have surgery if these meds don't work. . .

The Rock said...
Don't take it to heart, mentioning surgery out of the blue like that is a real shock, but you should brush it off. You have plenty of options to try out. Maybe remicade will do the trick, it sounds like you have mild to moderate UC and infliximab has proven effective for people with severe cases of UC. You have plenty of options at hand, so don't freak out. As for surgery, it's something that we unfortunately always have to keep in mind, someday, if things get worse, it's a maybe. Nonetheless, nobody will ever force you into it, and it's wrong for people to suggest otherwise, especially when there are clear alternatives to try. My advice is for you to do some research and just relax, this will all pass and things will stabilize sooner or later.

Thank you so much for this advice. It's just what I needed to hear and makes a lot of sense. I am going to brush it off and just worry about the day I am living rather than the future. I have so much to be lucky for like my beautiful family, great career, and I am much healthier than many. I need to start thinking about what I am lucky for and not what I am not lucky for.

Happychick, I'd feel the same way. To me, surgery should be brought up by the doctor when UC is so bad your quality of life is seriously affected, there's a risk of cancer, or you've tried every available medical treatment you want to try and nothing can get you in remission. If your only real symptom is pain, and that pain goes away with a bit more Pred, bringing up surgery is crazy.

I say that as someone who would choose surgery over biologics so I'm in no way anti-surgery.

I'm not sure what it takes to get Remicade in the UK but you might want to research that now so you're ready if it turns our your current treatment fails.

Also, do the Pred taper the way that works for you. That's the number one area where I've found doctors to be absolutely clueless. Get some 1mg tablets and play around with the taper.

It stinks being on Pred and there are awful stories about it here but most people are ok even after several months. I was on it seven months and had no lasting effects. That was fortunate but not particularly unusual.

Seems kind of stupid to say that biologics are only reserved for severe cases and then talk about surgery.

kiptyn said...
Happychick, I'd feel the same way. To me, surgery should be brought up by the doctor when UC is so bad your quality of life is seriously affected, there's a risk of cancer, or you've tried every available medical treatment you want to try and nothing can get you in remission. If your only real symptom is pain, and that pain goes away with a bit more Pred, bringing up surgery is crazy.

I say that as someone who would choose surgery over biologics so I'm in no way anti-surgery.

I'm not sure what it takes to get Remicade in the UK but you might want to research that now so you're ready if it turns our your current treatment fails.

Also, do the Pred taper the way that works for you. That's the number one area where I've found doctors to be absolutely clueless. Get some 1mg tablets and play around with the taper.

It stinks being on Pred and there are awful stories about it here but most people are ok even after several months. I was on it seven months and had no lasting effects. That was fortunate but not particularly unusual.

Yes I feel the same. I think of surgery as the last resort for me when all other options have been exhausted and/or symptoms are that bad that they affecting your quality of life. The pain in my left side is irritating but other than that I'm functioning pretty normally. I think what it is is that they are fed up of me constantly asking questions about my health and questioning their treatment options and always researching. They are not used to this in their patients. But I am a lawyer by profession and researching and finding answers to questions is what I do. They feel fed up and threatened by me and now just want rid of me and that is by removing my colon and removing me off their patient books.

My doc started mentioning surgery about year six of my disease, and I never thought I would have it or need it. My disease was fairly bad. I had to leave college and work for a year because of it at my worst point. We started running out of meds to try and frankly I did not like the long list of side effects that came along with most of then. Even so, the thought of surgery totally turned me off. But I think my doc started mentioning it just to get me to start thinking about it. Turns out that a colonoscopy in year eight showed I was starting with precancerous cells, so I had no choice but to have my colon out LOL. Don't panic - no one will rush you into this decision. But, it is good to know it's an option and do a little reading up on it. Honestly, surgery was a lot harder than I had expected, and I developed some post-op issues, but I can say five years after having my ostomy surgery that I have a much better quality of life than when I was sick - even when my disease was relatively controlled. No pain, no worry about accidents, my diet is not as limited, no fatigue. I've dated and guys have been fine with it. I'm more "me" with it. Sure, it comes with its own set of cons, like UC does, but, I'm glad I was forced into getting one.

Good luck, and I hope you feel better!