Surgery for uc, yeah or nea

For years I was checking the UC forum while hubby was suffering with it and got a lot of good advice while he was chasing that elusive remission. His local doctor was doing a good job and going by the book so to speak - but getting additional info from those suffering as well and "been there done that" helped to a point. His local Dr also sent in a referral to Mayo Clinic as she was at the point she felt he needed more specialized intervention.

Since my husband suffered for 5 years - tried everything - failed remicaide - steroid dependant and his overal quality of life was very poor and our social life really was at a very bare minimum it was time to accept the surgery route.

He needed to make that decision himself and come to that point on his own without me or any Dr pressuring him to do so which was the case. It is almost 11 months now and he wishes he had done it sooner. He said so 3-4 days after the surgery! He is not disappointed in any way that he has this permanent ileostomy. We had hoped for a shot at the j-pouch but it was not meant to be for a lot of very good reasons.

Granted, he had a great surgeon - recovered very well - after the trial and error and getting used to the regimine of the wafers and pouches and which one works best for him it wasn't as difficult as we feared.

We both did a lot of research once he made his mind up to go ahead with the surgery so we took the unknown and surprise element out of it so we were both quite prepared and no shocks at all.

If you are considering surgery there is a lot you need to put into it to make sure it is the right choice for you.

The UC forum saved my sanity while I went through all of this with him and helped me be a better advocate on his behalf as he was so sick he couldn't even think straight let alone spend time on the computer.

Granted it is a lifestyle change - if all goes according to plan and you have an easy time adjusting to it you will find that it does in fact give you your life back and allows you to be back in control instead of the UC controlling and inhibiting you. That is our experience.

allswell
I gave my two cents on the uc board.

Dan

I love my J pouch. I am so happy I had the surgery. You have to be ready to make that leap into surgery though. I think you just know when it's time.

It's a shame that any time a person suffering from UC asks about surgery on the UC forum and it turns into a big argument.

yeah...
i got my life back!

Surgery was the best decision I've ever made for my health. It completely gave me my life back, plus I don't have to see doctors or take any medicine. Life without IBD is awesome!!!

Thanks, I really like this forum, it,s great support. Was wondering what the monthly cost was for permanent ileo supplies.

Bye-bye, did you have any side effects from the Remicade, I don't plan on trying for that long. When you stopped did you notice any change even though it wasn't, really working?

My husband was at that point for quite awhile where nothing was working and helping. He was not interested in even considering surgery even with the pain, suffering and hermit-like existence. When we did go out the frequency and urgency and needing to know a rest room was close by was very difficult. It was easier to just stay home most of the time. It got to the point I preferred going out shopping and running errands on my own as I was a nervous wreck when he was with me. Sometimes we would no sooner get in the car and be a few blocks away and have to come back home or find a rest room in one of our nearby facilities in our community. The minute we got into a store the first order of business was to know where the rest room was.

The heavy duty meds we thought lessened the symptoms off and on a few times here and there but never put him into a remission. He had some days that were not as bad as others but never good quality at all and never really attained a remission. His new normal was something most people would not want to put up with for a few months let alone 4-5 years.

It got to the point that the pain meds needed to be increased and his 4 treatments of Remicade did absoluteley nothing. His local doctor told him that even though he had a high tolerance & found a way to try to live with this he was just masking the problem with the pain meds and it was her opinion that it was not a question of "IF" but "WHEN" he would be facing a potential cancerous situation especially with the medications he was consuming. Prednisone had already done a good deal of damage and he became steroid dependant so even high doses didn't help. She also discussed if the UC ever got into a spontaneous situation needing emergency surgery. And if cancer were to present itself then you not only need to heal from the colon being removed but possibly chemo/radiation yadda yadda. He was lucky in that he was strong and basically healthy otherwise and surgery would be more elective and the healing/recuperation should go much more smoothly.

That visit that day was the turning point with her speaking honestly and candidly since he was literally at the end of the line with medications and treatments so he said right there and then...."then I guess it is time - I'll have the surgery"

I was so proud of him that day. We immediately went into taking care of business and getting in touch with the Mayo Doctors and a weight was lifted off both our shoulders.

His age also was a big factor too....we are not getting any younger and surgery now would be better than waiting later as well.

Bottom line -- it is a very definite individual choice and one that has to be made once you have made up your mind the time is right for you especially if you feel you have exhausted all the different options.

And when you do make the decision you must do your homework and research and be well prepared. You definitely want a good surgeon.

Next month will be his first anniversary and these past 11 months for him and me luckily have gone quite well with no complications. He definitely is pleased he made the decision.

Well said Stripey and Summerstorm. I couldn't agree more.

allswell said...
Bye-bye, did you have any side effects from the Remicade, I don't plan on trying for that long. When you stopped did you notice any change even though it wasn't, really working?

No side effects....it just didn't work. I was still in a flare the whole time I was on it. I didn't have any change after I stopped and at that point I was really ill. I had surgery 3 months after I stopped the Remicade.

I would also like to make the point that I had to start Humira in January this year to get a bad flare under control. I had stopped the azathioprine after being on it for 15 years and had been in full remission for 7 years and my GI said he would like me to stop it and see how things go. Well 6 months ok then all hell broke loose. I had the worst flare I have had since I was first dx and restarted the azathioprine but he also rec starting the Humira. I wish to God I had never started the Humira, it has ruined my life. I now have nerve damage and joint pain everywhere in my body and stopped the Humira in June and problem still there. CD is back in remission with aid of azathioprine but I now have this nerve and joint problem for life.

So those who think it is so much better to struggle on with meds instead of having an op to cure their UC are walking a dangerous path. Humira hasn't been around long enough to know the full long term effects but I sure as hell know the effects after 5 months.

If CD had a cure like UC does and it meant having a op I would say yes now without any hesitation or regret. I had my ileostomy at 20yo and that was 20 years ago and have never regretted it for one minute and when I woke from first op painfree and not running to the bathroom I told my surgeon it was never being reversed even though I only had a loop ileo at that time.

Finally a day off and some time to write a more in-depth response:)

Though I was sick with UC for 10 years, other than the times when I had some bad flares that included a lot of diarrhea and even some trips to the ER, I never went through the experience of being chained to bathrooms non-stop for weeks or months on end like many of the posters here have. My main UC symptoms were lots of bleeding, lots of abdominal pain and tons of painful urgency where it felt like I had to go but nothing, or just a little bit of blood and mucous, came out. Really, in ten years these things rarely went away. I honestly don't know if I ever had a true "remission".

Still, I functioned very well and could still do most things I loved no problem. I never much pondered surgery or even the dangerous drugs because I was doing pretty well with steady use of Asacol and Rowasa. That started to change the final year of my disease. I started to have more diarrhea, increased urgency, enough small accidents where I was putting panty liners in the back of my undies and was losing enough blood to draw down my iron levels pretty drastically causing me a lot of fatigue. Things were definitely going downhill. My GI doctor recommended Imuran but I didn't think my disease was bad enough quite yet for such a strong drug and opted to try VSL #3 instead.

The stuff put me in a the most perfect remission I ever had in the history of my disease for about four months. Then everything came crashing down, I had a severe flare that landed me in the hospital for a couple of weeks and would not respond to Prednisone or my normal meds. The doctors said I "did not have time" to try Imuran. Being told you might not have enough time to see if something works is pretty frightening. I was extremely sick and went from weighing 135 pounds to 107 pounds in a couple of weeks and could barely walk I was so weak. I was faced with the Remicade or surgery decision very quickly. After trying one infusion of Remicade and seeing the debilitating joint pain it caused me, my decision for surgery became very clear. I never wanted to try the SCD diet or other food restrictions. I am already on a strict gluten-free diet due to a blood-test-confirmed gluten intolerance. I know how hard and limiting my diet is already. I had no interest in adding even more restrictions. I like food and eating, and all the fun socializing that comes with it. I was not willing to take that out of my life. In a lot of ways, I am sort of glad my final severe UC flare came on swiftly and suddenly. I didn't suffer for years of absolutely horrendous UC symptoms or endless medication roller-coaster rides before making the decision to have my permanent ileostomy and get my health back.

I am a year post-op and I am so happy about my choice. Even just the one aspect of ending the UC-caused abdominal pain for me has been worth it. I had not idea how much my belly really constantly hurt. I had gotten so used to it. Now I have no pains there at all. Add to that no more urgency, diarrhea, bleeding, fatigue, medications etc. and I am in awe of how amazing I feel.

One more side note about the Remicade. At the time I took it, I was still pretty sure I wanted surgery down the line. I mainly took it to end my flare so that I could get out of the hospital and gain strength for surgery a few months later. It worked wonders-- just one infusion saved me from having to get emergency surgery. The doctors originally wanted me to take three infusions before surgery, but after I had the bad reaction with the joint pain, my future infusions were cancelled. Fortunately just that one infusion healed up my colon enough to go into surgery a month later out of a flare and in fairly good shape health-wise.

Oh yeah... and cost-wise. My insurance pays 80%, I pay 20%. Fortunately, I don't have a deductible for durable medical equipment, which is the category that my ostomy supplies fall under. Generally my portion will be anywhere from $40 to $70 a month depending on what I order. There have been some months I haven't needed anything since I have enough left over from the previous month's order.

I too don't like the hostility that seems to erupt over on the UC board whenever the subject of surgery comes up. I hope that people facing or trying to decide on surgery know to come over here so they can find out the experiences of people who have actually gone through surgery.