Third resection surgery coming up in January

Well, I have been told by both my GI and a colon rectal surgeon that I need a third resection surgery. My last one was in 2017. While it’s not blocked, my crohn’s has inflamed at the last resection site and it has started narrowing due to strictures. I have been on Stelara for about 2 years now. I did have the load test and my body is metabolizing it way too fast and they wanted me to go to monthly injections which I cannot afford due to costs. Meanwhile the inflammation has been active and I just am tired of being tired and not feeling good. So I have agreed to the surgery. The surgeon is scheduled out until December and he is allowing me to wait until the holidays are over and do the surgery first week of Jan. He spoke to my GI about it and he agreed. If for some reason I need it sooner, the he has all the information he needs to do it.

The reason for the quicker surgery this time is in the past they have waited until the very end to do surgery and my intestines were a mess. This time they think they can do this without removing very much of the bowels. Also the surgeon is going to work on cleaning up my bowels where they are all twisted and such. Also I have an umbilical hernia he has to fix where it has been fixed before. He did tell me no way was he wasting his time on trying laparoscopic surgery as he knows he needs as much space to do what need needs.

The plan after surgery is start over on and older drug that I did try for very long via infusion and add methotrexate shots. We would start these about 3 to 4 weeks after surgery. He is still researching ideas so this may change. For those of us in the USA and on Medicare biologic medications are extremely expensive so this has to be part of the treat,ent decisions. I just want this over. I am tired of Crohn’s disease. It has run my life for the past 15 yrs.now with my third resection surgery coming over that 15 yr period.

I am so sorry that you are having such a difficult time. I know that having 3 surgeries is painful and disheartening. Hang in there. Have you ever gone into remission after surgery? And what medicine is he thinking of trying again? Is there a Medicare supplement that covers more Crohns meds so you aren't stuck in this position? I know that sometimes if you can qualify medicaid will help with those extra costs but am unsure on if it helps with prescription meds. I didn't think medicare covered stelera at all? Hopefully someone else that knows more about medicare will have some answers. I'm sorry I can't help much in that area. I do know that pharmaceutical companies will not allow anyone that has medicare prescription coverage to apply for their rebate programs. (Tried that with my Mother)

I know how you feel about Crohns. Its an evil disease. I can't believe we can devote so much time and effort to Covid and yet we don't have a cure for other diseases. Cancer.... Crohns.... mental illness...my list goes on and on. Covid is important but so are the others.

I have had 3 open surgeries from 2016 to 2021. Recovery was rough but doable. Renal failure after 2 of them but I recovered the first time and hopefully I am recovering this time. So I do understand what you are saying. Right now I am grateful to be alive and that I have only lost about 9 inches of intestines so far. (Now thats something I never dreamed I would say)

Prepare your home for the easiest recovery possible. It helped me to remember the other two surgeries to prepare--plus I added extra time in for growing older and weaker stomach muscles because of previous surgeries. I had the CRS perscribe the meds I would need prior to surgery(antibiotics) and took the pain pills home from the hospital pharmacy. I made little "tv dinners" and put in the freezer and bought loose soft clothes that were easy in and out. I bought bandage supplies, a portable bidet and calmoseptine.(which helped tremendously.) I also pre arranged grocery delivery and asked neighbors to check on me. And I borrowed a walker. It helped me the first week (or 2) at home.

I wish you the best of luck. You will be in my thoughts.

Clo

Just wishing you the best possible luck for your surgery, mirowpl. I'm not sure if I read your post correctly, but I am a bit surprised you are covered for Stelara but not other, presumably older and cheaper, biologics? You've got a couple of months so I would try to sort out another biologic for after surgery if you can. It may not be possible, but I hope it is.

As for open surgery, it's not any worse than laparoscopic surgery with regards to outcomes. My first two surgeries were open and I had no issues with either of them, apart from developing an ileus after the second surgery - let me tell you, that was the worst week of my life. (But the same thing can happen with laparoscopic surgery as far as I know.) My third surgery is going to start off as laparoscopic, but the surgeon did warn me it might have to turn into an open surgery depending on what he found - I told him that was fine.

I agree with Clo about preparing beforehand, but it partly depends on how much support you have at home. If you live alone you do have to give more thought to these things.

Mirowpl, so sorry to read another resection is in your future. I think your drs are on a good path to do surgery before the bottom falls out & you end up in bad shape. Hopefully catching this early before things get worse it should help with your recovery. My resection was an emergency & it was an open surgery. We were out of the country when it happened, after a week in the hospital, I started walking at the hotel. The hospital did not believe in getting patients up & walking them. Walking helped me get my strength back to get on a plane home.

Have you ever been on Imuran? If not it may be something to discuss with your dr. I was on it with Remicade & Humira & did fine. I have no experience with Methotrexate.

Take care.

I didn't know about 6 months of no meds after surgery. That wasn't even discussed or given as an option. I dream of a day with no meds required.

I do have a wonderful spouse. He's very good at helping me. I feel like I won the lottery when it comes to spouses. He's been thru so much with me that I try not to be a bigger burden than I absolutely have to. That's why I plan and plan some more.

Medicare sign up is coming up. Just a friendly reminder to try to find a plan that covers as many Crohn's meds as possible.

FYI, I have been on Remicade and methotrexate since 2015. The injections are supposed to be much easier on people. I had Pyroderma Gangrenosum twice..so my drs. do not want to take a chance on damaging the skin.

I had been off of methotrexate since March--but just had a Prometheus test showing a zero level of Remicade with 14 on the antibodies--so I started 13 mg once a week.(after an allergic reaction during my last infusion) I was sick for 2 days this time. I have developed antibodies after not taking methotrexate while preparing for my previous surgeries and each time it has "come thru" for me by knocking down the antibody level and slowing the processing time for the Remicade-eventually causing Remicade levels to rise. He also restarts patients on Remicade even when they have been off of it for awhile. I hope it works for you. Most of his patients respond well with the mx/Remicade combination and restarts.

I also had a 6x6 mesh insert during one of my surgeries. It was absorbable. It took alittle longer for that area to not feel as "tight". Before surgery you may want to ask your CRS what he will be using--have him give you all the brands/types he might use--so you can research. My kidney issues started with my last surgery when they placed the mesh. The doctors keep saying it doesn't have anything to do with that..but it just seems strange to me. Not trying to scare you, but I wish I had been informed before.

Please keep in touch and let us know how it goes.
Your in my thoughts and prayers.

Clo

mirowpl,

Are you having more issues? You don't want to have it done as an emergency (yet not an emergency) surgery. I did that with my 1st surgery. I tried stricturplasty. It lasted all of a week. They sent me home from the hospital. Then I developed an obstruction. We knew it could happen but had thought we were in front of it, until suddenly we weren't. I ended up with a colostomy. The colostomy saved my life and it's not so bad. I don't have to look for a bathroom all the time or worry about accidents anymore. Lol.

Clo

Mirowpl,

Good luck. Hope the surgery goes well. Fortunately, not to far in the distant future, along with the hope of the cancellation list panning out as well.

I had lapro surgery for a resection and it was just a mistake. I thought it would be easier to recover and it was not. I would not do that again. I just don't think even the best doctor can tie two pieces of intestines together using tools and a camera like they can using their hands holding the intestines outside the body.

Hope all goes well for you. I am sure it will.

I had lapro in 2019 to remove a small stricture that had formed from a previous surgery done like in 1987 at the anastamosis site. I was going to the hospital about every 4-5 months with partial obstruction. I sought the surgeon out because he told me he could do lapro. I consulted with another surgeon who said nope he would not even attempt it.

In Feb 2020 I develop an anastomosis leak. After this I was in the hospital about every month in 2020 with abcesses. This was bad because of covid. These eventually turned into two fistulas. The surgeon who did the lapro would not operate on me to fix these stating he wanted my disease to settle down, but I was in a very bad place. I had to find another surgeon in another city at a prestigious hospital to fix this.

In 2021 February I think that is the right month...I found a surgeon who was not afraid to do surgery and remove all of the infections, abcesses, and both fistulas. I was left with a wide open old school approach where the incision was not stitched or stapled up it was just wide open like I could see all the tissue and stuff when I changed the bandage. It was quite gory, quite I dunno the word grotesque maybe to look at this every day. It took several months to heal but heal it did; sort of.

In 2021 September I had another surgery because I had developed a stricture at this original surgery site from scar tissue where none of this healed up properly.
I am good now
.
Anastamosis leaks are pretty rare but I feel that lapro was the reason.

I would not do lapro again. I am not telling you what to do at all, but I am very happy that you are thinking about it.

Yes the surgeon told me too if needed he would do wide open instead of lapro, but that did not happen.

I have come to learn that lapro is just not as good as a doctor putting things together with their hands.

I will add my first surgery was open as there were not quite sure what they would find. The second started as laparoscopic but moved to open and so the surgeon now says open from here on out. Also, no ballon therapy nor pill cams for me. After two surgeries they are too concerned about tears at the resection site and or the pill cam getting caught there. The site is so narrow.