Surgery vs Biologicals

iPoop said...
Before starting biologics they screen you for latent/dormant infections that might reappear otherwise, examples include Tuberculosis and sometimes Hep C. They do a chest xray and skin test for TB. Pretty much those dormant infections can come back to full force, once they sense the immune system is weakened. Most insurance requires you to get annual skin tests for TB, while on biologics as we can get exposed.

It's highly recommend that you/I get an annual flu shot each year while on biologics (I do). It's a reasonable precaution to get one time shingles vaccine, and pneumonia vaccine as well (doctors keep reminding me to do this, but I am lax on this).

I would assume as a dentist, you'd be wearing a paper mask and rubber gloves which would protect you during most exposure to patient bodily fluids. Not sure how often you'd get stabbed with a needle/implement with patient blood on it.

notsosicklygirl said...
If you're seriously considering surgery, I think the first step would be to go on some consultations. I don't think there's any harm in going and speaking to a few surgeons. It might set your mind at ease to know that you already have an option if youknowwhat hits the fan. You might go for a consult and the surgeon may say that you're not ready, or it's unnecessary too... you never know.

There are good and bad things about surgery, and good and bad about treating. The reason I went for surgery, wasn't really because I was out of options, though technically I had blown through almost everything, it was mostly because I knew that if I waited, I was likely to need surgery in a few years regardless. The older you are, the longer it takes to recover. Nothing new has come up since I had surgery that would have helped me (it's been about 5 years). I also knew I never wanted to take steroids again.

For me, surgery has been a gamechanger. I have a j-pouch, so does Bull, KS, and Champ, so none of us have an external appliance. Out of the 4 of us, we've all had different experiences. I have had no complications or issues. KS has well-managed pouchitis. Bull had to have a redo to fix cuffitis. Champ had a hernia and just had a 4th surgery to fix it. That said, I think the situation I have is considered "standard". A lot of people have the procedure, it's in the past, and they move on - don't even focus on UC AT ALL.

The biggest issues I have with post-surgery life are, firstly, noise. Secondly, going more often. Those 2 things aside, my life is SO much better without a chronic illness. I would never go back to living how I was, worried about insurance and RX. I spent so much time and money dealing with UC, it makes me sick to think about it. I lost 10 good years in my 20s and 30s. What a shame. Surgery is not for everyone, and as I said, we have 4 people in this thread - with 4 different outcomes, at the same time, it seems like we are all happy we are done with UC. I would never go back and fight the fight. It just feels pointless to me. I would love to have a working colon, but with moderate/severe UC, I didn't, and I wasn't going to.

At this time, I could pick up and travel, or move to a place with limited healthcare, and live. With UC, I didn't have options. With UC, the thought of being without a job and insurance was something that gave me anxiety - now I think I'd be okay. If I lost my job when I had UC, I was worried I would be too sick to interview or to get to work daily, now I feel like the sky is the limit. In hindsight, the lost time in my prime work years screwed me over fully. At least I've moved forward...

I actually got an infection from biologics, pred, and immune suppressants. It was awful. I spent probably a month in the hospital battling septic shock and organ failure. I am very lucky to have made it through unscathed.

David1991 said...

3timechamp said...
Total colon removed. I go 1-2-3x a day Depends on how much I eat. Everything working great

Bull101 said...
I tried remicade and entyvio before removing my colon......I'd much rather have stayed on a biological.

Surgery is great and put me in a much better spot than I used to be. However, if I have a deep sleep and pass gas without waking up, most of the time it's not just gas but contains a little more....I'd say 90% of the nights I get up in the middle of the night 4-5am to go to the bathroom and empty my pouch (and for me it's not just a quick 30 seconds, so I'm fully awake after and takes a while to get back to bed....). I go between 4-7 times a day/night regularly depending on how much and what I eat. Things like all day events without a bathroom are no-go's for me, I'd love to be able to easily go on lake trips where I'm out on a boat all day or hikes with friends etc. but that's not a possibility.

Surgery is a great alternative if nothing else works....but it wasn't and wouldn't be my first choice. It gives you your life back, but it restricts many aspects of life and you really need to change how you go about things......coming from someone with a JPouch.

iPoop said...
How bad are your UC symptoms at the moment: any urgency, blood, how many bms a day, are they solid?

It seems you have a lot of fear regarding biologics, I am not sure why. I've been following this forum since 2012, and read many talk about their experience with biologics and most have had success with them. The rare side effects mentioned in the studies I have not heard about for the most part, which backs up the assertion that they are rare (otherwise we'd hear a lot more about them).

If the biologics are too big a step, then have you considered the thiopiurines (azathioprine, imuran or 6MP)?

notsosicklygirl said...
I don't keep count but probably 5 or 6x. It's fast. You feel the urge, sit, and go - you can "hold it" if needed too, not like when you have UC urgency and you need to get there NOW. You also don't have to wait around for something to happen, it's more like urinating. You have a pouch, the capacity is lower than a rectum, and the liquids don't absorb as well, so the output is looser. It can be firm too though, really depends on what you eat and drink. When mine is firm, it's like small pebbles, never a big log (sorry TMI). Staying hydrated is important, but fluids make output looser. The longer I've had my pouch, the less I worry about all this stuff. I just live my life, eat what I want, and drink what I want, and things haven't been problematic for me. The noise is when you use the bathroom. If it is looser output, sometimes it comes out with a bang. There are ways to make it quieter, like do not push so hard...

As for your friend, living without a colon, and living without a colon and rectum are different. A natural rectum is something UCers don't keep. We have a holding pouch made from our terminal ileum - the last part of the small intestine. The rectum has a larger capacity, absorbs fluids, and aids in compressing stool... Without the rectum, you will go more and have more variety of consistency versus a person with a rectum. The only positive of not having a rectum is not worrying much about rectal cancer. Surgery for UC never keeps the rectum since UC starts there, and often we have a lot of involvement there. Mine was the worst!

It's good that you're learning about your options. I hope things stay calm.

My health is so much better since surgery. I don't think I've been sick a single time. I was always sick on UC drugs. I was a terrible responder too. Always either limited response or no response - Remicade gave me horrible joint pain and a positive ANA. If you have a great response to the medical options, and most people do, you will do fine. I even had a bad response to 6mp. Always struggling to keep my counts up in the healthy range and dealing with liver enzyme issues. Every drug except mesalamine caused me problems.

Have you ever considered FMT if things progress?

IamCurious said...

After I discovered that I was allergic to mesalamines, (first Colazal, later tried Asacol), I tried eating strict SCD for a short time and my symptoms were very similar to what you describe.

Then I read a post from someone who said that she flared after eating crabcakes. I was eating clam chowder soup almost every day at the salad bar and noticed a big improvement when I stopped. Later similar response to broccoli, seaweed, etc. So now if you look at my signature diet is important but I ignore the SCD and instead keep a food diary trying to isolate triggering foods even if they are SCD legal.

Some supplements helped too, especially powdered psyllium seed taken with compatible probiotics.

Burli said...
I’ve been on Remicade and Imuran (50mg/day) for the last 10 years (so 43-53) and my life during that time has been great. My kids went through high school and much of college so I think I would have missed out on a lot of things I did with them and for them if I had multiple surgeries. It would have been them helping me. Timing is an important consideration for surgery. Be certain you think of your future in more ways than just drug side effects.
Cuts heal less rapidly so have to make sure I clean them and use a triple antibiotic ointment. Not a big deal; took a few times having a cut get infected before I learned my lesson.
I had a cholecystectomy on April 5 and healed normally (like back to work in 5 days). I did develop a clot in my lung and am sitting in the hospital but am to be released tomorrow. Point is I think this is just as someone with a normal immune system would have responded. Another point is, for the gallbladder surgery (large gallstone), I was supposed to have my Remicade infusion on April 6. The surgeon didn’t want to cut me open right after that infusion so I quickly scheduled the surgery the same week of my initial visit. Now I’m in the hospital for 3 days and still need the infusion. I plan on scheduling once I get out and haven’t had any colon problems but just pointing out crazy stuff happens.
I eat what I want, whenever I want. No mucous, blood nor excessive (often stank) gas.
I can not work just for the sake of getting stronger and faster than others (as in for sports) and cannot push myself hard, physically. Yard work is tempered. But that should have been something I realized earlier in life, nothing Remicade related.
Moderation and res are keys.
I managed to get pneumonia two years ago and again last year. I was pushing for a promotion and trying to resolve some home issues. I think I would have gotten sick if I were not on immunosuppressants but cannot be sure. I perform at work at a level equal to many of the top performers (those likely smarter and definitely healthier) and that gets me sick sometimes. It’s hard to back off when you know you can do something, you like pleasing others and you’re teased with more money. Consider if you’re doing that now and back away if it's making you sick all the time.
I can’t help listing personal advice & health issues.
I take Benadryl with each infusion (most do this I think).
A nurse comes to my home.
I have a job which has great employee benefits (I earn 6 hours sick leave and 8 hours of vacation every two weeks. I’ve worked at the same place for over 30 years (this might be something else to consider).
I get yearly colonoscopies (no biggie) and blood work drawn every 3 months.
You got lots of good help here and for someone who is taking Remicade I appreciate all the facts on this thread by everyone. My information is purely anecdotal and indented to maybe list one item you may have not considered.

ASellers said...
I have chrohns/colitis, I was terrified of biologic. I had zero response to a few of them. I considered surgery very much and consulted with a few surgeons. I’d also highly suggest you do consultations. Very helpful. Since it’s likely I have chrohns but active in my colon, they were all hesitant to remove anything. Offered a temp thing if I absolutely had to. Luckily Stelara gave me my life back. Each day I’m amazed. Who knows what will work for everyone and how long. Gets your cardio opinion too. I’ve seen literature on some methods of stopping biologics after remission but your doctor will have to tell you what they think. Remember you are sampling a tiny population out of all the people with chrohns or UC. You’ll make the best decision for you whether it’s surgery or meds. Good luck.

notsosicklygirl said...

David1991 said...
ea I'm just on oral mesalamine right now and LDN. Sometimes add mesalamine enema which used to help a lot but now I can't say it does much, same with oral mesalamine. And LDN hasn't done anything for me.

I've honestly not looked into FMT much at all. Is there a lot of evidence behind it? Did you try it?

Kulinarykidz said...
I haven’t posted in a very long time...but for a good reason. I’m off enjoying life and forgetting about UC. I was in the hospital for 4 weeks faced with this decision. Biological or surgery. They literally told me I had 48 hours for remicade to work after the first infusion or they would take my colon. I had all of your same fears. Will I get cancer, will I get sick, etc.

I haven’t regretted it a single day. For me it finally came down to quality of life. Even after I had a blip on remicade, the surgeon I consulted with at Cleveland clinic said she wouldn’t advise surgery until I’ve exhausted biologic treatment.

I’ve been around family members with strep throat, pink eye and the flu and somehow have avoided getting all of them with some obsessive hand washing and face masks.

I used to think about my disease all day every day and now only reallynwhen i take my pills and when I get my infusions.

Best of luck with your decision.