Surgery or not?

[WYX33155]

Hi every body
I just had a talk with my surgeon, who is going to operate me for my diseased colon with possible fistula.
After briefly introduce my story to him. He was a little bit doubt about my GI’s decision of the surgery. The surgeon feels that I am too healthy for the surgery, as he does not think the surgery would improve my living qualities.
Besides the fever and abscess I got recently, I felt myself getting better and better over the time. As I gain my control back for the BM, I can hold it for a while instead of rushing to the toilet. And most of my time, my stool formed the shape. And there is no blood or discharge with it. Moreover, I did not have the stomach pain even from the beginning when I have the Crohn’s. I think I was quite lucky with it.
For other aspects, except the time with high fever, I have good appetite for the last 3 years, and manage to gain the weight from 60kg to 67kg. I use to have diarrhea in the past with watery stool, but it’s gone now.
The only complain now is that, I still need multiple BM every day, as I cannot pass all stool at once due to narrow colon.
My current concern is that, I may escape from current surgery, but the fistula is still in my abdomen. I am not sure whether it can be healed with Humira. If it develops, and connects my colon with other organs, I may end up in an emergency surgery with more complications and longer recovery time. On the other hand, it really feel bad to have a surgery just prevent something that may come. And my living quality would degrade with the surgery. At least my body needs a quite long time to adjust to the new situation. That’s something both my surgeon and I are agreed on.
I’d like to know, is there anybody else has face the same situation. I’d like to hear some words from you.
Thanks a lot.

 

[Peter83]

Hi WYX,
your actual situation seems some sort similar to mine.
I was diagnosed with Crohn´s after 4 years since my symptoms first appeared. It was mostly terrible abdomen 1-2days pain finished with vomiting followed by 2-4weeks non-symptom period. Soon I did realize that fibrous parts of fresh fruit/vegetables were causing that, so I excluded them from my diet. Pain became less terrible however more often.

This year it was so unbearable I ended up in hospital with CRP 328 in april. The responsible GI there told me that sono+CT shows I have a stricture in terminal ileum to 7mm and some 40cm of inflammation down there. I was released with CRP 52 after 2 weeks with 1 month on Prednisone, 3 months on Metronidazole+Ciprofloxacinum ATBs and lifelong Pentasa 4500mg/day.

In may I went to see the doctors in, what I used to belive, the most advanced IBD clinic in my city. They did another sono+CT and told me, that I am in need of a surgery. They found the same as it has been found in hospital plus interintestinal fistulas and one small fistula to mesenterium. Told me that corticosteroids/immunosuppresants/biological treatments are contraindicated with that state and they have no medication to go further with in my case. Told the surgery taking more than 80cm of small intestine is the ONLY way to deal with it and I will be able to digest everything I want. Scared me that my dilated intestine in front of stenosis will rupture and/or whole small intestine will be removed leaving me solely on intravenous nutrition for the rest of my life.

I did my research that statistically these scenarios are quite unlikely in case of small intestine alone. Moreover they held back:
- the fact that without ileocecal valve, that was determined to be removed during surgery, pacients most likely develop constant diarrhea, which I don´t observe and would like to continue without it. Oh yeah, you could take a handful of resin everyday to stop it.
- you are on B12 injection shots every 2 weeks as your intestine cannot digest it after surgery
- told that recovery time is 5 months; some people cannot eat ordinary meals for up to 6months or even 1 year!!
- recurrence in case of fistulizing crohn´s is 80procents in 3 years after surgery (surgeon told that in my case I´m back in a year with another fistulas growing from the part where gut was stitched)
- in complicated cases as mine, temporal or even permanent ileostomy is highly likely

As a result I refused surgery.... and will EVER refuse any kind of surgeries that are not necessary and thus preventive as we have a sad case of another wrong diagnosis+operation in family. Doctors are just people (with god complex).

I am not afraid about into what my fistula develop. Interintestinal fistulas have old people frequently and no action is usually taken. The one fistula that is pointing against tissue in mesenterium is no concern also. Until it is connected with bladder/skin (as far as I have read - not a life-threatening condition in most cases), that time it would the exact time for the operation.

I noticed that my condition is now good enough controllable by a combination of lowfibre, lowcarb, fried free and alcohol free diets. Together with Pentasa only I have CRP between 20-40. It is not ideal, but I have mild symptoms when compared to the ones I had without knowing what´s wrong with me. Currently searching for more friendly GI.

I wish you good luck no matter how you decide(d). Looking forward to hear from you.