Small bowel resection for possible ileo-ileal fistula?

[Guerrero]

Hi guys,


here I go, after years of battle against inflammation and strictures in my ileum (with Humira first and entyvio then) it seems I have lose this battle. A tract evolved badly and the last mri showed a possible fistula formation (unclear if between loops or if getting to the skin).


My docs highly recommend a surgery before summer to cut probably around 10 inches, as they argue medications can't solve it anymore, and this part is useless for me now. Also I had strictureplasty before, so this solution is not on the table anmore.

My symptoms are manageable now, it's only about discomfort while digesting food. As they say it could evolved badly (I had a major bleeding 2 years ago), I agree it could be safe to plan a surgery now instead of risking urgent surgery when symptoms get nasty.


I've fear about the surgery and the pain related... and also wondering how I gonna feel after that, will I be able to digest food properly and have regular bm if they cut 10-15 inches?...



I'd apreciate a lot to read from you any similar stories, thoughts or advices about my case.

 

[lgpcarter]

Sorry to hear you have reached the point of surgery. But it is really not the end of the world! I had a bowel resection in 2016 where they took out 25 cms of large and small bowel, including the ileocecal valve. It was done laparoscopically, so recovery wasn't too horrible.

I was in the hospital for 5 days and off work for a month. Felt TONS better after (mine was due to obstructions because of scar tissue).

Happy to answer any specific questions you have. Definitely recommend doing it sooner rather than later - emergency surgery makes things so much more complicated.

 

[aypues]

I’m in the same boat. Have a mid ileum stricture 15-20cm that is fibrotic and not responding to medication. Also have occasional medium grade pain, chronic anemia, and low albumin. They warned me though of Entyvio and surgery...it’s an internal red flag here at UCSD among the surgeons. They won’t operate on anyone on it without a washout period. There have been several unusual complications and deaths I believe. So basically I’ve tried everything but Entyvio medically and that has better evidence in the large intestine anyway.

I had one surgery 20 years ago when I was 21 and in college. That was a major. Open surgery and 6 week recovery. Had to drop out of school for the quarter to recover fully. Was hemorrhaging badly. Non elective. Very difficult recovery I felt.

I have the same concerns about an elective surgery. Will I have more diarrhea? Worse malnutrition? Will I feel better? I’ll have to stay on Remicade but they think it’s a different ballgame after a surgery to contain it rather than be reactive to entrenched disease.

 

[aypues]

Here is an article I found on Entyvio and complications at UCSD:
https://www.mdedge.com/chestphysici...edolizumab-use-linked-high-rate-postoperative

 

[Bufford]

19 years ago I had a major rectal abscess that lead to open surgery for a two month hospital stay that left me with a permanent ostomy. Infection complicated things and I nearly lost my life. The surgeon had to remove half of my colon, apendix and a couple feet of small bowel.
It took me a long time to heal up, but my quality of life improved from the surgery and so far I have avoided further surgery. I do have inflammation and a stricture that has formed where the resection is where the colon and small bowel come together. It is a concern and I am being monitored. I chew my food well, avoid seeds and limit fiber. I eat four small meals a day instead of three larger ones to avoid overloading my digestive tract.

I tried various treatments including; pred, cipro and aza followed by Remicade. None of these treatments did me any good and the side effects became so unbearable I had to quit. Remicade was the worst. I was offered entivio but declined.

Being older and retired I have gone the natural route and I will not take anymore of the treatments.

I have found that controlling stress and diet works well for me. Keeping physically active promotes good health and better blood flow in the gut. I also take curcumin daily, which has provided me with more control over inflammation and better overall digestion.

 

[Guerrero]

Here is an article I found on Entyvio and complications at UCSD:
https://www.mdedge.com/chestphysici...edolizumab-use-linked-high-rate-postoperative

I had no idea, but I had my last entyvio end of march, so I guess the washout will be enough.

I didn’t speak with the surgeon yet, but the gi didn’t mention any worry regarding safety issue having been on entyvio.
I guess they’ll only need to monitor the situation and give more antibiotics after surgery in case...

 

[NuttyGuts]

Hi Guerrero,

I agree with lgpcarter- resection surgery is not the end of the world, thank goodness. I was diagnosed with Crohn's in 2014 and was convinced I could avoid surgery and drugs by following a good diet and lifestyle. I was wrong. By 2018 the stricture in my ileum was small enough to start giving me pain and trouble digesting all kinds of food. Luckily, my GI doc recommended I go talk to the surgeon "just in case" I needed surgery. She knew what I was desperately trying to deny- that it was getting worse. I had surgery scheduled for Jan of this year, but didn't quite make it that long. I called and asked to come in the week before Christmas. They took out 25cm of ileum, 5 cm of cecum, the ileocecal valve and the appendix Dec 18 last year. Luckily, it was not emergency surgery, I was in hospital four days, healed up well in about six weeks, and now feel pretty good! I still take Remicade every eight weeks, and azathioprine every day.

I would definitely recommend choosing and talking to a surgeon "just in case", so that you don't end up going in as an emergency procedure.

Hi Bufford! Glad to hear you are having success going the natural route- my hat is off to you!

 

[Bufford]

It goes to show that this disease affects everyone differently which is why it is so hard to manage. I had the big one 19 years ago that required emergency surgery that removed my appendix along with large and small bowel. While responding well to some treatments, they would go against me later. The all natural route is one worth exploring and trying, but it does not work for everyone, and I will see if it will continue to work for me over the long term. So far so good, but even so I do get episodes where I do not feel well, but so far I am able to manage.
The important thing is to know when to seek the doctor for help before things get out of control.

 

[lgpcarter]

I had no idea, but I had my last entyvio end of march, so I guess the washout will be enough.

I didn’t speak with the surgeon yet, but the gi didn’t mention any worry regarding safety issue having been on entyvio.
I guess they’ll only need to monitor the situation and give more antibiotics after surgery in case...

I did a washout of Entyvio for my surgery and then did loading doses again after, but thought I had read recently that is not necessary. I go see my surgeon to discuss a possible ostomy, but will ask him then. I am on Entyvio and Stelara now, so I am sure they will want at least one out of my system.

 

[Guerrero]

Hi guys, finally I saw the surgeon and had his opinion which was slightly different compare to what my GI said.
He had a look to my mri and said my situation was not that bad also considering my “mild” symptoms (no vomiting or semi obstruction events). He recommended surgery too but with no rush.
Also he said structureplasty could still be possible instead of resection only, which is good I guess I can save some precious length of my ileum.
I’ll be on a 5-6 months waiting list.
Hope my situation wont deteriorate without any treatment in the meantime.
Do you have any experience of being without treatment for like 6 months before surgery? Should I ask my GI to get a treatment or restart entyvio i just quit 2 months ago?

 

[Bufford]

What your surgeon says makes sense given your symptoms. There is little mistaking a blockage issue as the pain is usually quite apparent and present most of the time, only backing off to return. My firm belief is don't break what does not need fixing. I have questioned doctors that have told me that a resection will be needed and treatments ongoing for a life time. I had surgery back in 2001 and have had no further surgery since then despite the warnings/recommendations made more than 10 years ago. I take the recommendations from my doctors, but I primarilly follow my gut which has not been wrong... at least so far so good.

 

[Guerrero]

Yes you are right I naively believed them as I trusted them. Now I feel a bit betrayed but relieved. Hope they’ll support me even if I dont follow their plans. I’d like to keep going with entyvio instead of taking nothing. It had great results the first year.

 

[Bufford]

If entyvio is working for you keep going with it. Go with what works for you, and what makes you feel better. Drop anything that you feel drags your body down or has side effects that are more than you are comfortable dealing with. Don't heistitate to question a doctor on anything that you may feel uncomfortable with, doctors are only human and as such make mistakes, not every diagnosis is going to be correct. You know your own body better than anybody else.

 

[Guerrero]

Hi guys I'd like to give an update... the fistula is not confirmed, it was only a speculation of the radiologists, so I won't need a surgery soon... I'm back on entyvio.

 

[NuttyGuts]

Congratulations on getting over that hurdle, Guerrero!
An update on my condition is pretty good news. I had a bout of uncomfortable symptoms for a while that a breath test pinpointed as hydrogen SIBO, a condition often faced by folks who have had the ileocecal valve removed. One two week treatment of rifaximin seemed to take care of it, and my last blood tests were all good, including low CrP.