25 and considering surgery

Hi,

I had a consult with a surgeon last week, and he says I'm a candidate. I have been on Humira since July, following an awful flare that started in April. In October, I was in the ER and put on Prednisone, starting at 40 mg. I'm at 15 mg right now, and doing ok, but I still have a lot of urgency and occasional pain. I'm also tired all the time! I get really sick at least once a year, and have tried many medicines in the 5asa class, prednisone, 6mp, and now humira. What worries me about feeling well now is continuing with all these potentially dangerous medicines for the rest of my life, and never feeling 100% again. What worries me about surgery is the failure rate of the J pouch for people with UC, and having an ostomy bag for the rest of my life. I'm also worried about prognosis for people on medicine vs. having surgery. Also, I'm worried about depression post surgery and the what if/when factor for research in healing the disease. I don't have family where I live, so this decision is really hard because friends in their 20's without the disease have a hard time relating/understanding. Any opinions? Thanks!

Currently: humira weekly, rowasa enema nightly, liada 4 pills daily, iron supplement, prednisone tapering 5 mg weekly (currently 15 mg), calcium, zinc, vitamin D

Tried: asacol, apriso, canasa, uceris, cortofoam, balsalazide

Hi Try,

I am in the process of going through the surgery stages. It's your choice where you draw the line when deciding to have surgery. My line was when I pooped my pants at work, was on 40mg of pred AND full dose Remicade. I decided to jump OFF the med bandwagon. I did not want to take those drugs anymore. Since Remi didn't work, I didn't want to try Humira (they are both TNF). I didn't want to just continue the med cycle. If you are not OK with where you are right now, then opting for surgery might be a good option. I'm sure a million people will jump on you telling you to try this that supplement, med, or diet. As I mentioned, you decided what you want to try and when you are done.

As for surgery, you WILL need to live with an ostomy for awhile. After dealing with UC, the ostomy wasn't bad. I mean, one day I came home and didn't quite make it to the bathroom before it all let loose. I was already having to clean up poop so at least with an ostomy, it was contained. Whenever I go pee, I check to see if I need to empty the bag. There is another negative when dealing with no colon- the risk of dehydration. The colon absorbs quite a bit of water so those without one tend to dehydrate more.

There isn't a huge failure rate for surgery, and I'm saying this as someone who has had a rough road. Cleveland Clinic has a 94% HAPPINESS rate. People like their jpouches. I think the national average is 90% success rate. You just need to make sure that your surgeon has experience making jpouches (maybe 100 at a minimum?). I don't know where you consulted, but you might need to travel quite a distance to get a good surgeon.

With depression...are you already prone to depression, do you think a jpouch will depress you, or do you think an ostomy will depress you? If you are already prone to depression, anesthesia can enhance depression for awhile. I don't think a functional jpouch would depress you in the future. Surgery/recovery sucks but people do end up happy and functional. Average is "pooping" 6-8 times a day. When you go pee, you empty your jpouch. True, if you are a guy you will need to take more time in the bathroom to go sit on the toilet, but women are used to that already! At the end of they day, if you are depressed there are drugs. I take stuff for anxiety. I was strongly against them for a long time but wow it was a life-changer. My life improved greatly.

woofwoof: That's what I'm worried about. Once surgery is done, it's done. No going back. Right now, my stools are relatively normal, a little blood streaked and urgent, but definitely not as bad as things had been. The surgeon put it in good perspective for me: Those with UC just adapt to the disease, while the same symptoms would cause anyone else to go to the hospital. I'm used to it, it sucks, and I'm worried about what all this medicine is doing to me. I have no energy, which is bad at any age, but being unmarried and 25, I am definitely socially self conscious over it . I know am I committed to UC until there is a cure, but it isn't voluntary, so I'm hoping for something to cure me before surgery. Surgery, on the other hand, is a voluntary commitment, and I'm worried I will be stuck with the wrong choice.

What exactly are you remorseful over with your J-pouch?

Thank you for letting me know. My surgeon is very experienced, and was ranked highly on some of the reports I've been reading, but he mentioned that people with UC have a higher failure rate, like 10%. And 30% occurrence of pouchitis. This is all too much, but again, something that has to be dealt with whether convenient of not. What finally prompted you to seek surgery?

I recommend that you ask your surgeon how many j-pouch surgeries he has performed. I would not personally use a surgeon who had performed fewer than 200. "Very experienced" is subjective... a surgeon can have a long career and be very experienced but only perform a few j-pouch surgeries per year. I'm distressed that he said that there is a 10% failure rate, that's just not true. I hope he was mistaken and wasn't quoting his personal failure rate -- my surgeon's failure rate is about 3%. And UC patients have a higher failure rate compared to whom? The vast majority of j-pouchers are UC patients, but they are also sometimes performed for cancer or FAP (a genetic disorder).

about 50% of UC patients who get a j-pouch have one or more occurrences of pouchitis within 10 years of surgery. For the majority of cases of pouchitis, you treat it with a course of antibiotics and then it goes away, typically for *years*. There is such a thing as chronic pouchitis, and a large percentage of pouch failures are caused by it... but again, that's ~3%. Not 50% or 30%. 3.

At the time when I had surgery I was on 40 mg of prednisone, more than double the standard dose of Remicade, rectal meds, methotrexate, and high doses of Flagyl and Cipro. Even with all of that, I had 10+ bowel movements per day, I could only eat a few different foods (pasta, white bread, boiled chicken), I had lost 40 lb, and I was incontinent generally about once a day. I was in diapers. I couldn't work anymore so I moved back in with my parents. I started thinking about surgery because it was becoming clear that Remicade was not going to work for me. I had absolutely no response to it, even at a high dose, and it was pretty much my last hope as far as drugs go. The thing that pushed me to pull the trigger and make the decision was that the antibiotics (Flagyl and Cipro) resulted in a rare side effect called optic nerve neuropathy. Basically my left eye started going numb, and if I stayed on the antibiotics, I was going to lose my color vision (at a minimum). When I tried to taper off the antibiotics, I had bowel movements every 30 minutes all day. I was between a rock and a hard place. I really felt like I could endure however much suffering I needed to while I was waiting to get better, but I wouldn't throw away my eyesight trying to hold on to a colon that I was going to lose someday anyway. I had a lot of adverse effects, and like I said, I was soiling myself regularly, but it took the eye problem for me to realize that while I was waiting to go into remission, the rest of my body was being destroyed.

One thing opened my eyes a bit before surgery. I had to take a quality of life questionnaire from my doc. It asked things such as "How much does UC interfere with what you want to do" "whenever you go to a new place, do you first look for a bathroom" "how often are you in pain every day", etc. etc. That really put into perspective exactly how much UC had damaged my life.

When meeting with him, he asked me to rate my life on a scale of 1 to 10 with 10 being awesome and 1 being absolutely horrible. Figure out what you think your number is. I told him 4. Then he said, "you are probably living at a 2 because those with UC learn to adapt and then forget how much they have adapted." Sounds similar to your hospital analogy.

My surgeon basically told "you will get pouchitis sometimes. It's like the flu. You get it, you treat it, it goes away." Now there is another problem called Chronic Pouchitis which is pouchitis that doesn't go away. It's recently been theorized that those with CP actually have Chron's disease. My doctor doesn't sugar coat things either, so I believe his stats (at least for their institution).

I'm not trying to convince you to have surgery, just giving you another perspective.

I think you are being overly scared about surgery. Sure, nobody usually actually wants surgery but it is a question of quality of life. Either you want it or you don't. Just keep a perspective on the whole thing. You can find horror stories about any kind of surgery out there, such as a tonsillectomy, etc.. My mom needed gallbladder surgery but they did not want to do it until she had angioplasty for her heart first as several of her heart arteries were fairly well clogged. She had heard horror stories about angioplasty so she refused. Soon afterward her gallbladder got so bad they were forced to do surgery. She died on the table due to a heart attack, which is what they had warned her about if she did not get the angioplasty. Really bad complications from J-pouch surgery are very low indeed, almost nill. From everything I have ever read the 30% figure of complications usually has to do with Pouchitis, which usually always gets resolved. It is just a bump in the trail to recovery.

Yeah. I was wanting to make a post such as ipoop's but wasn't quite sure how to word it. People with one autoimmune disease are often more susceptible to coming down with another autoimmune disease at some point, occasionally at the very same time. I don't believe it usually quite works like your surgeon described, "My surgeon said that because we still have autoimmune disease, it could attack other parts of our body.". While inflammatory diseases such as UC may involve more than just the colon in some patients, most of the time autoimmune diseases are completely different entities. It doesn't work like you have UC, get your colon removed, and then your body decides to attack something else instead. It was either already happening or you get completely cured and then later on down the road you might come across a trigger that triggers another autoimmune disease that really wasn't related to your UC at all.

My questions from my first consult, and UCWarrior's list of questions (another happy healthy poucher!) which is more complete, are both here: www.healingwell.com/community/default.aspx?f=33&m=2606824

... as an aside, it is a total trip to see my old posts from pre-surgery. dark days!

iPoop said...
Uc is an autoimmune disorder, meaning our immune systems attack the lining of our large intestines. Roughly 20% of patients with uc have other immune system disorders, e.g., Rheumatoid Arthritis, Diabetes, or other things like that.

This never played a roll in my decision to have surgery, UC was totally controlling my life and the meds were not working. I am happy that I had surgery recently.

I'm not sure if those statistics are correct or not becuase like I said this did not play a roll in my decision to have surgery but if it did then I would probably look at it as 80% of us will not get another AI disease.