Why wouldn't you go for surgery!? *rant!!*

I've just about had enough of UC!! I'm sick of my life being ruled by it. I have not been in remission for the past 18 months since I was first diagnosed because they just can't seem to find anything that works consistently.

The Azathioprine doesn't seem to have kicked in yet, and although my symptoms have improved since being in hospital I just am getting to the point where I cannot cope with the tiredness and almost constant tender stomach etc etc. I'm STILL not able to work full time and that in itself is hard enough.

I just don't want to stay on this concoction of drugs any longer, especially as they have potentially dangerous irreversible side effects. And because even the short term side effects are hard enough to deal with.

I've grown to accept over the past couple of years that this is how my life will have to be...but why?! None of us should have to live our lives like this. So my question is...why havn't more of you gone for the surgery?! I've got Proctitis so I'm not sure how common it is for them to operate on that seeing as it is such a small part of the intestine?! But I sure as anything am getting to the point where I just want it out!!  

I'm considering it...
Would I rather be on medications for life? I don't know. I know I can't do Prednisone any longer and if the Remicade doesn't work, I don't know what else to do. If the Remicade does end up working, do I really want to be on a drug that new for such a long time? I'm only 26. Ugh

Oh, does anyone know if I would have to wait a certain amount of time after a c-section before having the surgery? I know they tell you not to have a repeat c-section with a year or 18 months, and isn't it a c-section cut?

oh, and something else that scares me about surgery is that i read somewhere about possible infertility/issues with pregnancy after. is there any truth to this?

I'm seriously thinking about it, I've always had it in the back of my mind, but never thought too much into it because I've never been one that minds taking medications (even though its irritating to have to take so much). But its since I've been suffering the side effects, and potentially irreversible side effects, and that I've actually become steroid dependant, I'm thinking is it worth carrying on with this?! Especially when its not even improving things THAT much.

My only concern is...as mentioned in my first post in this thread - how common is it for Proctitis patients to have surgery? And would they remove just the last section of the intestine or take out the whole thing? It just seems that the majority of people who have the surgery are those that have a large area of their intestine affected.

And also my consultant isn't one to take into account just how bad I'm feeling so I'm not sure he'd agree to it..his last comment to me (after he'd admitted me to hospital twice!) was 'Proctitis is generally not a condition that affects your life or how you feel, its just annoying and hard to get rid of.' I nearly fell off my chair....not affect your life or how you feel?! I think its a bit more than that. On the other hand tho my IBD nurse in fantastic and so understanding.

Tell your consultant to walk in your shoes for one day if he thinks that it can't be that bad!  For any patient with proctitis or UC that is dx as steroid dependent; it's that bad.

As mentioned, my UC was limited to my rectum and to a very small spot of it.  Everything else looked good but it all had to go and at that point I wanted it all to go and I wanted to move on with life.  If you don't remove the rectum and the colon the UC will come back.  Your surgeon can explain this to you. 

 

Sue

I had the entire proctocolectomy because that is the standard surgery for UC no matter how much of the colon/rectum is affected.  A surgeon worth his salt will not do a partial colectomy on a UC patient in my opinion because the disease will return to the parts remaining.  My GI was not in support of my decision; I made the decision while lounging in the hospital with a severe flare.  A nurse came to see me and told me she had the jpouch surgery a few years ago.  Listening to her describe her agonizing life with UC to her new life post UC I knew that surgery was my best choice.  The nurse was healthy, active (a marathon runner) and had no diet limitations.  All the bad things that I was told about life with a jpouch were not true according to her.  And they aren't true according to my experience either.  I can't tell you how much it meant to me to meet a jpoucher face to face.  Her experience and the consultation with a surgeon sealed the deal for me.

Sue

My daughter just had the one year anniversary of her surgery (July 3). When she was first diagnosed at 15-1/2, we wouldn't even think about heavy hitting drugs let alone surgery. Three huge flares later, having gone through almost all the meds and becoming prednisone dependent, she chose surgery. She never needed to be hospitalized. She "just" missed 9 weeks of school three separate times. For her, it is the best decision.
She had a fabulous senior year of high school. UC is a memory for her.

Fertility may or may not be an issue (they can't be sure). We knew this going in and discussed it in depth. My daughter's feeling was that she would rather have to deal with IVF or another form of fertilization or even adopt rather than have to worry about how the "big gun" drugs would affect her the rest of her life, when (not if) she would have another flare, what would it be like when she flared (again not if she flared) while pregnant, and flared as a mother of young children, etc. She worried about what she would do when she flared as an adult who had to hold down a job to keep her insurance and make ends meet.

She had a full incision (from just above her belly button to her pelvis). The surgeon did a phenomenal job and it has healed beautifully. The scar fades more and more. She is not ashamed of her scars (she calls them war wounds or tattoos with better stories). She is out today at (yet another) graduation party wearing a tankini.

While it was hard to make the decision as a 17 year old, she knew it was the best time for her. She has no major responsibilities. She is under our insurance still, she doesn't have to support herself. She is looking forward to college.

My daughter was in remission when she had her surgery. The surgeon said her colon didn't look terrible (as you often hear). After surgery, he said you must feel better now that your colon is removed. She said no (because she had been in remission at the time). But she still knows it was the right decision for her.  She didn't want to wait until it became an emergency.

Surgery is a very personal decision. You need to be ready for it (unless it is an emergency). Definitely consult with a surgeon. Get names of people from the surgeon of patients who have gone through it. We spoke with a girl who had similar experiences as my daughter (diagnosed about the same age, similar reaction to drugs, surgery around the same age, etc).

This is why I love this site! Thankyou so much everyone for your opinions and input, its given me a lot to think about. I wasn't aware that the surgery may possible cause infertility problems...hmm! But then the meds I'm on or possibly going to be put on next are possibly going to do that anyway. What a horrible decision to have to make!

But thankyou so much for your replies, they are a huge help. I'm going back to the hospital for my appointment in 2 weeks so I'll discuss it then.

I will avoid surgery until I am told my life is in danger. I have dealt with the symptoms of UC for over 15 years now. I have sacrificed my quality of life over the past 15 years. If I were to have surgery now by choice, the past 15 years could be in vein. I am waiting for better meds and treatments, and hoping something comes out soon for the sake of everyone with UC and Chrons.

I'm in the minority, but I wouldn't have surgery unless there were no other option. Removing a major organ and living life with an abnormal digestive process is not something I'm prepared to do unless I have no choice. Even in the early days when I was extremely ill and desperate, I had a strong sense that my body and my health were in my own hands. It was up to me to educate myself on UC, autoimmune diseases, how the digestive system works and what can cause things to go haywire. I collected a library of digestive health books and read everything I could get my hands on. It didn't take long to realize my diet and lifestyle had certainly contributed to my condition. I was in a moderate to severe flare for the first two years solid. There were times I was discouraged, times I felt sorry for myself and times I didn't want to live. But some stubborn part of me kept plugging along, kept praying, kept learning, kept experimenting. It was a long, tough road, but I don't regret my decision to avoid immunosuppresant drugs and surgery and work on positively rebuilding my health. The reward has been about eight years of remission with only minor problems (usually due to getting lax with my diet) and a scope last week indicating no signs of inflammation.

As usual I agree with Princesa.
Removing part of your body that was meant to be there should be a last resort. You can't undo it, once it is done. Find out the complications and how will it really be after it is removed.

Have you tried everything you can? Diet?, Maybe slowly ween yourself of the drugs and see if you have a change or try an older drug like Sulfa. I think for many people they become allergic or intolerant to the drugs over time and can actually make things worse. Maybe even try a juice or water fasting.

Yeah, my biggest concern is the fertility issue. I do have one child but I want another in 4-5 years. I had not heard that Remicade could cause fertility problems.

qwerty1 said...

pam222 said...

Yeah, my biggest concern is the fertility issue. I do have one child but I want another in 4-5 years. I had not heard that Remicade could cause fertility problems.

I could be wrong, sorry! I had read on a couple of sites online that they think it could but not definite. But then you can't believe everything you read! The internet is full of info that might not even be correct.

I just hope it doesn't. It's all so scary really. Having the surgery, being on the medications. Nothing sounds good :(. Of course, we have no choice. We have the disease so what else can we do?

Oh, yeah, I read waaaaay too much on the internet while pregnant and just worried about everything. Don't use google while pregnant :D