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Ileo Rectal anastomosis questions

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Posted 10/29/2017 6:24 PM (GMT 0)
I have posted several times before but wanted to give just a bit of the backstory with this post. In summer of 2013 I had ileo rectal anastomosis surgery done at Johns Hopkins. It was an ordeal with two surgeries, 31 days in the hospital and 3 months at home with TPN and a G tube. Eventually it all worked out and I am living a normal life with about 4-6 somewhat formed BM per day with manageable urgency. As far a medication goes initially I was on Pentasa but a new, also current, GI said that wasn’t doing any good as it was for the small intestine. He put me on the suppository canasa. So right now I do 2 canasa per day and VSL3 DS probiotic once per day. I do I Lomotil with each meal and 2 Metamucil wafers as well.
My concern is this. All scopes, 6 month intervals since the surgery have shown some inflammation at the connection. No dysplasia so far. After my most recent test, two weeks ago, the GI explained that some docs believe that the inflammation is the result of the surgery and not newly developing colitis of some kind. Others he said don’t believe that. So he wants to start me on a biologic most likely Stelara. I’ve watched to ads on TV and hear all the horrible side effects form these things.
My dilemma is if I do nothing and what’s there is new colitis and dysplasia shows up at some point I will have to have more surgery and a bag. Perhaps the Stelara may get rid of what’s there if it is colitis but at what cost? I’m sort of back where I was before the initial surgery, feeling fine, no symptoms but dysplasia in my colon then made the surgery necessary. I feel fine now and have a somewhat restricted diet but nothing I can’t live with.
So I wonder if anyone has had a similar situation with inflation after surgery and what they did about it? Sorry for the long post.
Posted 10/29/2017 11:09 PM (GMT 0)
Your case sounds fairly similar to mine, except I never had dysplasia: I had my colon removed 'cos of severe Crohn's which was refractory to all meds. I had ileorectal anastomosis surgery in July 2015, but the Crohn's quickly came back at the anastomosis. I went on Entyvio for a year, but I'm switching to Stelara.

You should have had biopsies taken during your scopes. What do the biopsies say? Personally if you have a history of Crohn's, then it is almost certainly that. Bowel surgery can make the intestines sore and swollen for a few weeks afterwards, but I have literally never heard of surgery causing inflammation 4 years later.

Before moving onto a biologic, you could try steroid or mesalazine enemas. If I recall correctly, Canasa is only 1mg but there are mesalazine enemas which are 4g. Bear in mind that mesalazine isn't terribly effective for Crohn's, so this may not work. But if the inflammation is mild it's worth a try. If it's more severe, I would seriously consider the Stelara. Side-effects are a possibility, but many people don't get any: just because they are listed doesn't mean they are inevitable.

Good luck with whatever you decide.
Posted 10/29/2017 11:35 PM (GMT 0)
Thanks for the reply.
I have had biopsies done with all the scopes and so far no dysplasia. I guess I'm hoping someone can confirm the idea that the inflammation could still be the result of the surgery. The inflation is confined to the area of the connection the rest of the rectum is clear.

I have an apt with GI in about 3 weeks to discuss. I might go see another GI top get another opinion. Very disappointing after all I went through to have to be back in this positon of worrying all the time about dysplasia and cancer.

I know the side effects sound scary and most likely won't happen but you never know.
Posted 10/30/2017 11:25 AM (GMT 0)
No, the inflammation can't be the result of surgery that was done 4 years ago and any surgeon who says that to you is fobbing you off. I get that there was no dysplasia but what do the biopsies say about the type of colitis? Do they identify it as being Crohn's? It's extremely common for Crohn's to come back at the anastomosis site after surgery.

As for the cancer risk, if you have regular surveillance scopes that will catch any dysplasia early on. But if you really can't bear the worry, then consider the option of removing your rectum and having a permanent ileostomy. I'm 42 and I'm resigned to the fact that one day that's going to be my fate - either 'cos the Crohn's gets too bad or I develop dysplasia.
Posted 11/6/2017 11:50 PM (GMT 0)
Thanks for all of your feeback. I just received my results from my scope of 10/18 and the biopsies were negative. So that is a relief for now.There is evidence of inflammation consistent with Crohn's disease. This has been the case for ever since my surgery in 2013. But the location ( at the connection) and the amount of inflammation has remained about the same and I have not had obvious symptoms. It is described as moderate.

I think I should try to do what I can to get rid of the inflammation because I know that its presence is a precursor to dysplasia. So Stelera is being considered and the approval is in process. I'm worried about the side effects of the drug. I want to ask my GI about the mesalamine enema and steroid. When I was first diagnosed with crohn's That GI gave me a predizone dose pack along with asacol. Shortly after I went into remission for over 20 years. Then in 2012 the scope revealed dysplasia and that led to the coloectomy.

I also think I will see another gi and get a second opinion. I hate having to think about all this again and sweating out scope results every 6 months.
Posted 11/30/2017 8:26 PM (GMT 0)
This is a followup to my last post. My insurance had denied stelara saying I have to fail with another drug first. My GI is suggestion Remicade. That one scares me more. anyone have experience or success with this drug? I see my GI again tomorrow to discuss furhter.
Posted Yesterday 1:44 PM (GMT 0)
I am not sure what the initial reason was for your IRA, but I had jpouch surgery 16 years ago for surgery. I have been told then and now that those of us without a colon will always have a degree of inflammation in our new plumbing. If the inflammation is not causing problems (excessive frequency) than it's nothing to worry about. I don't worry.

Sue
Posted Yesterday 2:34 PM (GMT 0)
I had my colon removed due to dysplasia showing up in colonoscopy biopsies. At that time I had moderate inflammation from Chron's but no symptoms. Since my surgery there has been some inflammation at the connection. My GI did say that some believe that will always be there as a result of the surgery. But in the end he said it looks like Chron's to him. So he wants to use a biologic to try to clear it. If dysplasia were to show up in what I have left of my colon it would mean surgery and a bag. So I guess clearing the inflammation will decrease the likelihood of dysplasia showing up. I'm not sure but I think people with UC don't have to worry so much about the dysplasia. I have a very manageable and typical experience with my IRA. Don't even pay attention to the 4-6 BM per day and have been able to expand my diet some as well.

My big concern is the potential side effects from these drugs and fighting with my insurance company for coverage. I could potentially make myself really sick by using them but at the same time if I don't do it I could end up with a bag or worse. Kind of back in the same decision making spot I was in before the IRA surgery.
Posted 12/3/2017 2:31 PM (GMT 0)
Sorry you are dealing with doctors and decisions again.

I do not have an IRA. I had a colon resection with temp ostomy, then after takedown back to an ostomy. But from 2 decades of Crohns and what I learned I tend to agree with SueBear. If you are being regularly checked for dysplesia and symptoms are not an issue I might leave well enough alone. When I had my resection that site was never inflammation free and they acted like it may always have a little inflammation there. I didn't live that way long enough to know.

I was in a similar situation with my ostomy. Since my diagnosis is Crohns some doctors say one should be on meds even with an ostomy. My doctor believes monitoring with scopes and going by symptoms is sufficient. I'm currently on no meds and monitored once a year.

I was on Remicade for over 8 years with no issue. It did get rid of all my inflammation and symptoms in my colon at the time. Infusions every 8 weeks were a pain.

A second opinion is probably a good idea and then listen to your body and trust your instincts.
Posted 5/26/2018 1:06 AM (GMT 0)
This is a follow up. My GI manged to get me into a free Stelera program.; I started in mid feb with an infusion and then had a shot 8 weeks later. I recently had a sigmoid and the inflammation was much improved. I could see it myself as I don’t use sedation. GI is delighted as I am as well. My next shot is next week. Hope it continues to improve. No real change in symptoms because I really didn’t have any before. Need to have the scopes to see the changes, next one in 6 months.
Posted 11/7/2018 10:09 PM (GMT 0)
This is another follow up. had my 6 month endo today, no sedation, so I can see what is going on. There was no inflammation at all today. My GI literally shouted Oh MY God it's gone. So that is great news. He also deiced I can now go on a yearly schedule for scopes. and wean myself off of the Canasa. Stelara worked and no side effects.
Posted 5/14/2019 9:38 PM (GMT 0)
Things have become very serious since my last post. I went from being elated about the effect of the Stella to being diagnosed with stage 4 metastatic colon cancer several weeks later. How can I have colon cancer and not have a colon? I’m not sure and either are the docs. Here is the back story.
I had a total knee replacement on Nov 27 2018. While at home recovering I had high fever and chills, looked like an infection, back to the hospital. My surgeon said that knee is not infected. I told them about an ercp I had on my liver in April 2018 and the symptoms were the same , fever and chills. I suggest they look at the liver to see if the bile duct was blocked again. Well they looked with an mri and found some “things” on the liver . A needle biopsy came back with stage 4 metastatic colon cancer.
Where was the primary? Thinking was small bowel. I had a liver resection to remove the tumors,all the tumors were on the left side, so taking off about 45% of the liver removed the tumors. I am now in my 5th chemo treatment, every other week until sept. I am tolerating it pretty well at this point.
So the question comes back to the primary. During the liver surgery the small bowel was examined, and no tumors were found. Scans revealed nothing in the lungs or anywhere else. My GI think I actually had colon cancer when I had my colectomy in 2012 and that a few cells moved on and it took this long to get to the liver. Anybody have thoughts about this? The colon was biopsied when it was removed and declared clear but I know the biopsies are random and the cancer might have been missed. I have read a bit about metastatic cancers of unknown origin so that might be the answer.
I’m optimistic about the final outcome but this is not the retirement I was looking forward to.
Posted 5/15/2019 11:40 PM (GMT 0)
I don't have any ideas, but I just wanted to wish you good luck and hope that the treatment works and you can enjoy your retirement. I guess at least the cancer was caught early enough for you to have a decent chance of remission, but I can understand the feeling of it not being what you bargained for.
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