Surgery questions and experiences

[Maya142]

My daughter’s friend has Crohn’s that has never really been well-controlled - she has mostly small bowel disease which is worst in her ileum. She was first put on 6MP, then took herself off meds in college (despite being told by a GI that she would eventually need surgery if she didn’t start Remicade - young adults!) and then finally was put on Stelara. She failed that, despite increasing frequency to every 4 weeks, adding MTX and doing various diets faithfully (CDED and IBD AID), adding Entorcort or Prednisone once or twice and now unfortunately has failed Humira and MTX too.

She has a stricture in her ileum that has now narrowed to the point that her MRE says there is danger of obstruction. There is also persistent acute and chronic inflammation and scar tissue, as well as dilation before the stricture. She has just seen a surgeon who said her resection will likely involve two laparoscopic incisions and one larger incision through her belly button that will be 3-6 inches to remove the damaged tissue - so not a laparoscopic surgery. Her GI had made it sound like the surgery would be completely laparoscopic and not just “laparoscopically assisted” so she’s very scared of how painful it will be.

I was wondering if anyone could share experiences of resections and what the recovery is like and how big the incisions were, how pain was managed and if meds worked better after surgery. She also has significant acute and chronic inflammation in her TI so she’s very afraid of a stricture forming there.

I’m going to tag @pdx and @Pangolin since I think their kids had surgeries.

 

[Pangolin]

I think the larger incision at the bellybutton is pretty standard. Not sure about 3-6 inches, but that's definitely where the portion of intestine came out for my son. It's healed up pretty well, not too noticeable. Recovery was better than I expected, overall not too awful. Surprisingly little pain medication was needed. I'm not sure how else to describe it, but I'd say that by 3 weeks after the surgery he was feeling relatively normal.

My son had a relatively small portion of his intestine taken out at the terminal ileum and the start of the large intestine (plus the appendix), which was the noticeably inflamed area. Fecal calprotectin before the surgery was 8000+, and after the surgery it was about 400-600.

We were hoping he wouldn't need meds after the surgery, but after some time it became clear that he would need them. EEN after the surgery really helped with healing, but eventually he started Stelara (beginning with both EEN and Stelara for a while until the situation was good). Now 3 years later all labs have been normal for the last 2.5 years.

Remicade and Entyvio weren't really effective prior to the surgery (Remicade helped some of the numbers, but he was not well on Remicade), but EEN kept him out of the hospital for almost 2.5 years before he finally got the surgery. After surgery, Stelara was very effective.

I'd say she should try Skyrizi after the surgery, if needed.

 

[Guerrero]

Hello Maya142,
Sorry to read those bad news regarding your daughter’s friend. However I can tell you a surgery for an intestinal resection is pretty « standard » for a surgeon and should be performed in laparoscopy as a first attempt.

I had a similar surgery last year. The pain was quite manageable, the hardest was during few hours after the surgery, but then pain decreased quickly with the medications and I slept well with relaxing music. I think the 3-6 inches is a kind of worst case as i doubt i have a scar of more than 3-4 inches and it was performed in laparotomy (it was my second surgery and there were adherences probably from the previous one so no chance to do it in laparoscopy).

The recovery is like 5/7 days in hospital then 2/3 weeks at home. I had no need for pain medication at home, the only pain came from the abdominals, but it was pretty manageable, much better than expected and than my first surgery 10 years ago. I guess surgeries and procedures evolved positively for patients compare to years ago.

Dont hesitate to contact me for further details.

 

[Maya142]

Thank you so much for the responses. Her GI hasn't talked about meds after surgery, but I know she has mentioned JAK inhibitors in the past (though that was before Skyrizi was approved). I think Entyvio is not an option since she has mainly small bowel disease, so Rinvoq, Remicade and Skyrizi are probably what's left. Or perhaps Humira will work well after the surgery.

@Pangolin do you remember how long your son was in the hospital?

I didn't expect 5-7 days @Guerrero - that seems very long! However, my daughter had open abdominal surgery for a different issue and she was also in for 5 days, mainly because we were waiting for her bowel and bladder to "wake up."

Do either of you remember what pain meds were needed? IV or oral?

 

[Guerrero]

Yes it’s 5 days normally, 7 days worst case.
Pain meds in hospital are on IV of course as you cant take anything orally right after the surgery. Then oral at home if needed.

 

[Guerrero]

Consider usually day 1 you enter the hospital, day 2 surgery day, day 3 you stand up few hours, day 4-5 you recover to get ready to go home, day 7 « worst case ». It’s not so long

 

[Pangolin]

@Pangolin do you remember how long your son was in the hospital?

I don't remember exactly. Maybe 4 or 5 days? We probably stayed a day or so longer than he really needed to, but fortunately they weren't really pushing him out fast.

 

[Maya142]

Thanks, it’s good to know that 5+ days is pretty normal!

Also glad to hear the scar heals and doesn’t stay noticeable. My daughter’s friend has been very worried about the scars.

 

[pdx]

Sorry I didn't respond earlier--just seeing this today. I had to go back to look at how long E was in the hospital for her resection--it was just 4 days. (I would have guessed longer.) Her disease situation sound really similar to your daughter's friend's, in terms of the disease location and severity. E had 14 inches of intestine removed, including her TI, the strictured and dilated parts of her ileum before the TI, and the beginning of the large intestine. She also had a large ovarian cyst removed at the same time, from the opposite side of her abdomen. So she had 3 small laparoscopic incisions, and one larger one through her belly button. That one was probably about 3 inches.

She felt OK right after the surgery but was in a lot of pain once the anesthesia wore off. She is very sensitive to pain, though, much more than most people. I think she was on just IV oxycodone at first, and was finally given IV morphine which helped. I wish I had pushed for more pain relief earlier. A lot of her pain was referred pain from the gas used in the abdomen during the surgery. Once that finally subsided she felt much better. After she went home, she used some oral oxycodone for a few days but didn't need more than that.

Surgery was a complete game changer for E--her quality of life is wildly better now, so much so that I wonder if it would have been better to have the resection right away upon diagnosis, since she already had the diseased TI and scar-based stricture at that point. In the year prior to surgery, she had a calprotectin of 8000, anemia, horrible erythema nodosum, overwhelming fatigue, and finally had to come home from college for a term. Post surgery, Stelara is keeping her Crohn's under control, and all her symptoms are gone. Last calprotectin in November was 68.

For 7 years we tried so hard to avoid surgery, but it ended up being a good thing for E. Good luck to your daughter's friend--it's a hard decision, I know.

 

[Maya142]

This is very helpful, thank you! I’m so glad Stelara is working well for E. I hope that means Humira will work well for A, my daughter’s friend, after surgery.