Is it time to have surgery? Any idea welcome

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UC_wilderness
New Member


Date Joined Nov 2017
Total Posts : 3
   Posted 11/9/2017 8:37 AM (GMT -7)   
Hi, this is my first post and I need some advice/support/encouragement... as I am a bit lost what I should do.

I was diagnosed with pancolitis in May 2016. Main symptoms are gas, loose stool, frequency, urgency, rectal pain and tiredness. When I was diagnosed, I was first started on Asacol and later a course of Clipper (with budesonide foam enema). That put me into remission for 3 to 4 months until early this year, my symptoms returned despite Asacol and my GI asked me to try Cortiment MMX as I did not want to go on Prednisolone. Things have not improved after a few weeks and I started to have more blood and cramps - they started me on Prednisolone but within a week, I ended up to have 10 times a day and was admitted to hospital for a severe flare. They put me on iv steroid but I did not respond well and finally, they started me on infliximab infusion as my rescue treatment before surgery. Infliximab works and at the same time, I was also started on azathioprine (have been taken for 6 months). I managed to tail off Prednisolone within 2 to 3 months and returned to work after 10-week off work. Unfortunately, symptoms returned a few weeks after returning to work but it is a mild flare and I am still on infliximab which I think it has helped. I restarted cortiment MMX and the foam enema but it did not work and in two weeks, I finally went back on prednisolone 20mg as it is a mild flare and I still manage to work. Things started to improve with prednisolone - not 100% but I can function okay. I went on holiday and enjoyed my holiday and when I returned, I had another infliximab infusion (which my GI has increased the frequency from every 8 weeks to every 6 weeks). To my surprise, despite the infliximab, my symptoms got worse a few days after the infusion and even increased the prednisolone to 40mg, it did not work and I was back to the hospital again for iv steroid in late September. My response to iv steroid is suboptimal and they gave me an extra infliximab infusion (which is pretty risky as I had that 2 weeks before) which seems to have done the trick - bowel back to normal with formed poop! Now I am on infliximab every 4 week and taper steroid (currently on 17.5mg daily). I have bad side effects from steroid - not sleep well, difficult to concentrate, moody and also very hungry and put on weight! Last week, things are a bit less stable for my bowel (more loose stool and more gas, after reduction of steroid to 20mg) and my GI asked me to slow the taper.

I have seen the surgeon again in my second admission and will have an appointment to see him next Monday for further discussion. My GI said I can try vedolizumab if my symptoms get worse despite the current medications combination but he is not very optimistic it will work. So far, my bowel is relatively okay and I will say I am largely in remission, although this is my last week before the infusion and my stool becomes looser. I have a calprotectin level done last week and it is 98 (the worse I have had is >1800), although it is worse than 68 a few weeks ago.

I am taking the supplements and also have Chinese herbal medicine - it probably helps a bit but still does not seem to give me any longer stability.

I just think I have enough for the unpredictable nature of my UC and I have done all the things I can do to try to prevent a flare but still, end up in a severe flare and in hospital. I am off work again now and thankfully they are supportive - however, I find it hard to live a life like this, not knowing when I will flare again and also whether I can come off steroid or not (my "gut" feeling is that I may be steroid dependent).

I am prepared for surgery including the stoma but obviously, this is a big decision and I am wondering whether I should hold on a bit longer. If I have the surgery now, at least I am in a relatively good state, rather than in an emergency. They told me that if I end up in the hospital for another flare, or if I cannot come off steroid, surgery will be my only option.

I know everyone is different and it is down to the individual - this makes it tougher to decide. My family thinks I should wait a bit longer but I am not sure. If you were me, would you wait, or would you opt for elective surgery now, rather than waiting for another flare?

One thing bothers me a lot is my energy level/fatigue, which is very low from time to time and I find it hard - it may be the steroid but I think it is also the UC as well. For those who have surgery, will surgery help the fatigue/low energy?

Sorry for the long post but I am feeling rather confused and lost... sad

Danny
Pancolitis diagnosed in May 16; two hospital admissions for iv steroid in 17
Medications tried: Asacol, Clipper (Beclometasone), Cortiment MMX
Current treatment: Infliximab 5mg/kg every 4 weeks, Prednisolone (tapering), Azathioprine 150mg daily, Budesonide foam enema as required, vit.D-calcium. Also taking supplements (Omega 3, Tumeric, Glutamine, multi-vitamin) and even Chinese herbal medicine

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10835
   Posted 11/9/2017 9:19 AM (GMT -7)   
Welcome to the forum Danny, but sorry you have to suffer so much with bowel issues like we do. It sounds like you were doing well on Remicade/Infliximab and then began to loose response. You did respond to an increased dosage, and are doing better. A percentage of people on Infliximab do encounter that and do well once their dose and/or frequency is increased.

If you've been on an increased 5mgs/kg every 4 weeks since late September, then I would be patient and give it more time. You already know infliximab works for you, and you do feel better since the increase. Healing takes well longer than you or I ever want it to, and can take many months.

Have you ever had an infliximab minimum concentration and anti-infliximab antibodies blood test? It's good for understanding what happened and what is the best next step.

1.) The test might say you are doing fine and stay the course.
2.) If you have significant antibodies to infliximab then consider switching to adalimumab (aka humira) or golimumab (aka simponi). Those medications are within the same class as infliximab, you would likely respond well to them. However they are different enough that there is no guarantee that you will develop new antibodies against them.
3.) If you do not have antibodies to infliximab yet have high concentrations of infliximab, then vedolizumab (aka entyvio) would be a rational choice. It's a different class of biologics and is helpful for those whom infliximab has failed. There's others besides vedolizumab, there's Ustekinumab (aka stelara) and also Tofacitinib (aka xeljanz).

Most try a second biologic before going to a surgery. It varies though. Some fight until they've exhausted all possible options. Some throw the towel in and say they're done well before then because flaring indefinitely is pure suffering and many months and years can pass while we exhaust everything. Very personal choice. Just know surgery isn't an instant-gratification. Rather, it is often a series of 3 separate surgeries for a j-pouch each with its own recovery period.

Fatigue may or may not persist after a surgery, there is no guarantees it will go away. For some it does not. Are you anemic, have low blood-iron levels? It's common for us.

There's always uncertainty with a chronic illness. We have no crystal ball to know what the best choice is. We just do our research and do what we feel is right.
Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

Urgency Roused "Oh the places I've pooed from culverts to shady bathrooms" the memoirs of a UC patient. Run, don't walk, to you local bookstore...

Post Edited (iPoop) : 11/9/2017 9:34:31 AM (GMT-7)


UC_wilderness
New Member


Date Joined Nov 2017
Total Posts : 3
   Posted 11/11/2017 9:05 AM (GMT -7)   
Thanks, John - that is helpful and gives me some perspective. I think I am losing my mind a bit after all these thinking.

I had the infliximab antibody checked before my GI increased the frequency - it is negative. They also check the drug level just before another infusion - it was within the range but he said that for colitis, they are still figuring out the level and hence, they increased the frequency to every 4 weeks.

I have regular blood tests for my infusion and I am not anaemic smile Blood is not my main symptoms and actually is pretty rare for me to have blood.

I think you are right - I am getting better but I still don't think I am in full remission. Put it this way, I am not sure I have ever been in full remission since I was diagnosed. I hope I can come off the steroid but I just feel it may not be possible. I have been reading a lot about surgery - just got a book for St Marks Hospital in London and I think it is really helpful to get another perspective, especially thinking more about the potential risks. Here is the link:

www.stmarksacademicinstitute.org.uk/news/ileo-anal-pouch-surgery-ulcerative-colitis-guide-patients-written-zarah-perry-woodford-lead-nurse-pouch-stoma-care-st-marks-hospital/

I am seeing the surgeon on Monday and see what he thinks - I have seen him twice before when I was in the hospital and he knows me well.

Thanks,

Danny
Pancolitis diagnosed in May 16; two hospital admissions for iv steroid in 17
Medications tried: Asacol, Clipper (Beclometasone), Cortiment MMX
Current treatment: Infliximab 5mg/kg every 4 weeks, Prednisolone (tapering), Azathioprine 150mg daily, Budesonide foam enema as required, vit.D-calcium. Also taking supplements (Omega 3, Tumeric, Glutamine, multi-vitamin) and even Chinese herbal medicine

iPoop
Forum Moderator


Date Joined Aug 2012
Total Posts : 10835
   Posted 11/11/2017 9:24 AM (GMT -7)   
Certainly explore all of your options.

There are also some good blogs out there that really help you get a handle on what the process is like from 1st hand accounts -

Moderator Ulcerative Colitis
John
, 39, UC Proctosigmoiditis
Rx: Remicade @5mgs/kg/6wks; daily 75mgs 6MP, 4.8g generic-Lialda, and rowasa

I believe that my anus is a portal from Hades as only evil comes out of it.

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15236
   Posted 11/11/2017 10:09 AM (GMT -7)   
Have you had stool tests to check for pathogens? I was a non-responder to all of the biologics. The reality is they work for about 60% of people. When they work, they work for periods of time, some people they work for long periods and other people lose effectiveness rather quickly. I never had any result with any of them.

Have you considered trying other biologics? Entyvio? Stelera? Clinical Trials? I didn't go too far with trying to find a rx solution. Once I failed the mainstream meds, I moved on to surgery. The timing just kind of worked for me, I was strong enough and I wasn't on steroids. I didn't want to go back on steroids. I had suffered from septic shock due to the meds, which probably made my decision easier. I knew I never wanted to deal with that again... I was also sick of all the medical expenses. My insurance was getting more and more expensive, and I was spending the max out of pocket each year, which is now $6000. When I had surgery it was only $2500. Thinking about it now, I didn't spend anything on rx or medical last year, well very minimal, maybe $100 total. That's $6000 I got to keep. I can deal with going to the toilet a few more times a day to get off that doctor/rx train. What an awful situation that is.
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.

Doggiedo
Veteran Member


Date Joined Jan 2014
Total Posts : 622
   Posted 11/11/2017 11:02 AM (GMT -7)   
I had surgery two months ago for j pouch and my reversal last week. Just this past week, we were discussing with my husband whether surgery was the right choice for me. We both agreeed that it was better for me to come to the decision rather than having an emergency hospitalization and having to do rush surgery and have it not be my choice.

It really comes up to how sick you are and how you feel about taking that next step. It’s a big decision. I remember after i made the decision, I felt a huge relief. Like there would be an end to it all.

Please don’t let anyone influence you to wait if you want to move ahead with things. It’s up to you- and you’re the one dealing with life the way things are now. I hope you find peace in whatever path you decide to take.
Moderate to severe colitis, diagnosed in 2003, hospitalization in 2006, Feb 2017, July 2017 for colitis related complications

Step 1 & 2- ilestomy and j pouch creation surgery on Aug 25
Obstruction - hospitalized early Sept
Step 3 - Nov 2

Medications: Zantac

UC_wilderness
New Member


Date Joined Nov 2017
Total Posts : 3
   Posted 11/11/2017 12:07 PM (GMT -7)   
Thanks notsosicklygirl - my GI is quite thorough and each time I deteriorate, he arranged me to have stool checked for pathogens including C.diff toxin and all came back negative. He also got me to have a flexible sigmoidoscopy to confirm the inflammation. I live in the UK and we are lucky in a sense that I don't need to pay for our healthcare (I always tell people that I have got all the tax I have paid in the past years through what they have done for me for my UC!). My GI has suggested a clinical trial (etrolizumab) but I need to have steroid down to 20mg daily (which I just make it), or I can try Entyvio. I guess I am a bit like you how much more I should try, or should I actually get the surgery done which is "curative" in a sense? If I did not have two severe flares this year, both ended up in the hospital and off work for a significant period of time, I probably should try a bit more biologics. It is really not an easy decision. I have spoken to someone who had a permanent ileostomy (his choice) 10 years ago because of UC and he said he felt he made the best decision on his case. Obviously, one cannot be sure for surgery but I have heard so many people said something similar and it is really very tempting.

Doggiedo - thanks for your advice. Sometimes I think it may be easier if I don't have a choice (i.e. no more option but surgery) as I don't need to make the decision. How are you recovering from your surgery?

It is so good to have some people who understand what I am going through. I think my friends don't know what to say to me now and I can understand why.

Danny
Pancolitis diagnosed in May 16; two hospital admissions for iv steroid in 17
Medications tried: Asacol, Clipper (Beclometasone), Cortiment MMX
Current treatment: Infliximab 5mg/kg every 4 weeks, Prednisolone (tapering), Azathioprine 150mg daily, Budesonide foam enema as required, vit.D-calcium. Also taking supplements (Omega 3, Tumeric, Glutamine, multi-vitamin) and even Chinese herbal medicine

Post Edited (UC_wilderness) : 11/11/2017 12:11:20 PM (GMT-7)


therearemiracles
Veteran Member


Date Joined Dec 2006
Total Posts : 3521
   Posted 11/12/2017 4:35 AM (GMT -7)   
Hi Danny,
I'm in the same boat, I've tried every biologic, no luck. Chinese herbs no luck, but seemed to give me energy. I liked them. What one are you taking? I'm was taking Health Concerns , Formula H and Isatis Cooling. If biologics don't work, I'm thinking it's a bacterial thing. I'm doing a stool test next week.
UC since '05, now in '15 Mayo Clinic say Chrons/colitis and DX with chronic Lyme's in '10. No biologics work. Now on Stelara , not working. Now trying Chinese herbs and love them so far!Took rafaximin for SIBO, worked awesome!

notsosicklygirl
Forum Moderator


Date Joined Dec 2008
Total Posts : 15236
   Posted 11/12/2017 5:31 PM (GMT -7)   
therearemiracles said...
Hi Danny,
I'm in the same boat, I've tried every biologic, no luck. Chinese herbs no luck, but seemed to give me energy. I liked them. What one are you taking? I'm was taking Health Concerns , Formula H and Isatis Cooling. If biologics don't work, I'm thinking it's a bacterial thing. I'm doing a stool test next week.


Biologics didn't work for me and no bacteria was found. They work for more than half, but not for everyone. I hope it's a bacteria so you can treat it.


UC_wilderness said...
I guess I am a bit like you how much more I should try, or should I actually get the surgery done which is "curative" in a sense?

It's hard to compare surgery to a "cure" because although you no longer have UC, there are other issues that come into play. As much as I am thankful I am done with UC, it would be nice to have a working colon. Then I think about what that would mean, and if it means expensive drugs and doctors, I am not sure it's worth it. All of that stressed me out and limited me in so many ways - my future was highly impacted so far as career options, traveling, where I could live (needed to always be near good doctors/hospitals). I would rather live how i am than deal with the UC roller-coaster. I would rather live how I am than, face surgery in 20 years and deal with ups and downs that whole time & possibly not be a candidate for a j-pouch. That is just me though, some people don't need that type of stability to be comfortable. I love waking up and not taking a single pill - except a vitamin if I want to. It's weird after taking between 6 and 18 pills a day for years, to take nothing - spend nothing, not go to the pharmacy.

There is no reason to rush into anything though, try what's available. I did. I think most of us do. If something works and it's easy enough for you, you don't have to worry about cost which is great, go with it. Nothing worked for me, so the decision was made for me. I needed off the steroids. I was so chubby and pimply. I was miserable. I couldn't live as that person any longer & surgery got me back to the person I was. smile
Co-moderator: Ulcerative Colitis
Currently: no meds. 6/15 Step One J-pouch Surgery Complete! 9/15 Step Two Complete! 11/15 Step 3 Complete!

Give a man a fish and he will eat for a day; teach a man to fish and he will eat for a lifetime; give a man religion and he will die praying for a fish.
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