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Son facing small bowel resection surgery next week - ANY INSIGHT for VERY anxious mom?

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Posted 3/19/2016 12:48 AM (GMT 0)
My 19 year old college student son is having small bowel resection surgery next week. He was dx last July due to two years of non disclosed ongoing bloody diarrhea. At the time of his dx it was noted that he had a stricture in the terminal ileum and one on the sigmoid colon. He started remicade / Imrun / Pentasa and the diarrhea went away. This past January he started to get stomach pains, diarrhea and frequent vomiting (and he noted that often his stomach "knotted up" when growling and then would feel better). His GI thought it was his stricture and ordered an MRE (had a previous on in August 2015). Before we could do the MRE a C - diff test came back positive and we were told the pain was from C- Diff and vancomycin seemed to make everything better. Four weeks later it happened again and we were told to cancel the then scheduled MRE because it was a latent C - Diff. Back on a longer and tapered dosage of Vanco. Two weeks later he began to have stomach pains and endless vomiting - so bad he went into the ER only to find out he had torn his esophagus from the vomiting (or possibly from the upper endoscopy he had that morning to check on possible ulcers). He was in the hospital for 5 days - primarily because of the esophagual tear (makes doctors very anxious). His GI wanted him to see a surgeon which we did last week. We had hoped to wait until May when he would be out of school But his surgeon said it needs to be done now because he is a) Healthy b) at risk of tearing his esophagus again. We have scheduled a laproscopic partial resection where the appendix and one foot of the small intestine (some large too?) will be removed - along with the terminal ileum and illeocecal valve. This is all so sudden and I feel very anxious. What should we expect? Is it a long recovery? Can he return to school in one week, two weeks?? I have read (and read) endless articles about Crohns returning to the anastomosis in a relatively short time which would necessitate more surgery and more intestines disappearing. Please let me know your experience or any words of wisdom to help my son (and me) prepare! THANKS!
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Remiade, imrun, pentasa, probiotics, vancomycin, augmentin (for esophagus tear - which can cause C- diff on its own but may be mitigated since son is already on vanco - what a mess!)
Posted 3/19/2016 1:27 AM (GMT 0)
I have read (and read) endless articles about Crohns returning to the anastomosis in a relatively short time which would necessitate more surgery and more intestines disappearing

It can do, but try not to let it get to you. If Crohn's reappeared in a few weeks in everyone who had resection surgery, they would all end up with short bowel syndrome. An unfortunate minority do end up with just that, but it's quite rare. For most people, surgery will last them 10, 20 or 30 years before they need another one.

You just have to hope your son will be in the category of people who have a lengthy remission. There is a discussion in another thread about whether to go on medication after surgery. I chose not to. But given your son's young age and fairly aggressive sounding disease, it may make more sense for him to go on medication than me. He's young, so he should spring back quickly, although I think going back to school in a week's time sounds a bit optimistic.
Posted 3/19/2016 1:41 AM (GMT 0)
Hi Betty Sue - So sorry to hear of your son's illness. I had basically the same surgery when I was 21. That was many, many years ago! These days they do wonders with laproscopic procedures. My 3rd resection was done that way, with a small incision for hand-assist. The recoup will be at least 6 weeks - he won't be able to lift more than a few pounds - it is major surgery and his resection needs time to heal. The first few days will be painful, but getting up a moving around a bit does help the healing process - and cut down on the gas!
My heart goes out to him and everyone who has to go through this. And yes, he could have more surgeries in his future. I had 3 over the course of 30 years - 15 years apart each, the 2nd and 3rd due to strictures. It is so important that he listens to his GI. 19 is a difficult age to have to adhere to certain dietary restrictions, but they are important. I hope he will participate in some of the many Crohn's/Ulcerative Colitis forums, and try to connect with other young adults with IBD. There are many celebrities and sports figures with IBD, and maybe reading their inspirational stories will help him. Please let me know how the surgery and recovery go. Best wishes!
Posted 3/19/2016 12:31 PM (GMT 0)
Thank you so much for your insights! I try not to go to the "what if.." but it is so hard not to! I spend countless hours researching this disease and realize that they are making great gains and yet so much still remains to be done! I have to focus on what is going well and not worry about future resections. The big thing is to get him through this semester and if that is not possible work with the disability office to get incompletes that he can possibly make up this summer! He is very private about this disease and I hope that someday he will get on a forum. I am sure it feels very isolating! This site is so supportive and I am so grateful for it!
Posted 3/19/2016 12:42 PM (GMT 0)
I had that exact surgery and it has been almost two years, and I'm still in remission with the Crohn's, and I just had a colonoscopy, so I'm sure of that! I think he will need three weeks off of school at the minimum and even then he will need to really take it easy. I think I took 5 weeks off work. The pain after going home isn't bad, it's just I had a lot of D until my body regulated and I didn't want to go anywhere like that. There are also lifting restrictions and stuff. I agree with NCOT that at his age, he should be on maintenance meds after surgery , but his doc will help you decide. If you run a search on small bowel resection for Crohn's in the search bar on this site, you can read lots of other peoples stories and experiences. Good luck with everything.
Posted 3/19/2016 1:03 PM (GMT 0)
I feel like he should plan on not returning to school this semester but perhaps he can finish up his classes this summer (he is at a major university which offers summer classes). I don't want him to rush it and then not heal as well. We really wanted to wait until May - after school but his surgeon became more alarmed the more he read his previous reports. I did do a search on this site and it looks like I will have lots of insightful reading ahead. Thanks for the suggestions!
Posted 3/19/2016 3:58 PM (GMT 0)
Hi! I'm so sorry he's going through all of this! I had a resection two years ago. I strongly, strongly encourage him to take it very easy after surgery and allow plenty of time to heal. I ended up with a bad abscess at the resection site due to bleeding, and while I'm not 100% sure it was from too much activity in the two weeks after surgery, I do think I pushed it way too hard. They do great things laparoscopically these days, and if you have a good colorectal surgeon he'll be feeling much better after a few weeks. But tell him to take it easy!! Best of luck to him!

Oh, and I did NOT go on medication immediately, but my crohns came back pretty quickly and I wish I had started some sort of maintenance therapy to keep things in check.
Posted 3/19/2016 5:10 PM (GMT 0)
As a former college instructor, I recommend that your son talk to each one of his professors on a one on one basis and explain the situation to them, or at least by email.
Many will advise him to drop out of the course due to medical reasons, but there might be one or two who are willing to work with him to devise some kind of plan to finish the semester.
Still, there is a question of whether or not he will even be interested in coursework after going through such a surgery or even phsyically capable.
Remember, there is always a possibility of the surgery turning from laparoscopic to a bigger incision.
Two of my aunts went in for a laparoscopic surgery, one for fibroids and the other for diverticulitis, and both ended up with pelvic to sternum incisions and much longer recovery times.
You just never really know how bad it is until the doctor goes inside and sees for himself.
Good luck to you and your son!
Posted 3/19/2016 8:12 PM (GMT 0)
Very much appreciated! I know he has reached out to all of his professors (and is enrolled in the Office of Disabilities) and has heard from two (school was on spring break last week). It would be awesome if he could finish one or two this semester but unsure of the reality. He has one day prior to surgery where he can talk with them in person. And I do keep in mind that his surgery could change into a bigger thing - it is all the unknowns. But I hang on to the hope he won't have to be hospitalized anytime soon with partial bowel obstruction and a torn esophagus from all the vomiting!
Posted 3/19/2016 9:28 PM (GMT 0)
No direct experience here, just wanted to wish you good luck with the procedure. Prayers coming your way.
I too would highly recommend a follow up treatment plan of medication. Although, I have a friend that had a resection 12 years ago, and is still in remission without meds. I still wouldn't recommend that route, but at least it's comforting to know that there is a good success rate post resection surgery.
Posted 3/19/2016 9:57 PM (GMT 0)
Thanks again to EVERYONE! And prayers are much appreciated. I think he will probably stay on meds for now.. he is still so new to this disease. And much can go wrong- but also things can and do go right!!!
Posted 3/21/2016 12:02 PM (GMT 0)
BETTY SUE ... I had 18" including my TI and my appendix resected in 1990. I stayed in remission for about 10 years and went about 20 years before things were not easily fixed with 2 months of prednisone. We are all different, but I wanted you to know that I had a positive surgical experience and several others I know have done as well.

I agree with your surgeon wanting to go now rather than wait. I had my resection due to an emergency rupture and it was not pretty. It meant I got very ill from the "toxic sludge spill" and I had a longer hospital stay followed by a readmission for a large abcess. I highly recommend being healthy for it!

I can't speak to the college experience, but I tend to agree with gypsy about having the 1:1 conversations with his profs. He may be able to complete some courses and take less in the future. Speaking as an old chick who hurried to finish in 4 years...a little longer time in university would have been a good thing for me.

Let us know how he is doing.
Take Care
Posted 3/21/2016 11:09 PM (GMT 0)
Thanks so much for sharing your experience. And I hang on to all the good news stories knowing that anything CAN and DOES happen - but I dwell too much on the negative WHAT IFs... I will let you know how he does. He has his surgery on March 23rd at 10:15!! Soon...!
Posted 3/23/2016 10:23 PM (GMT 0)
Dear Betty Sue,
in surgery now, with your son, i suppose so all will be well. Im now 18 years past my third resection and added pro biotics 15 years ago. I still take my mp6 and pentasa but at night I take a couple different probiotics for my gut health. I think the probiotics offer some real advantages for my CD. With the probiotics i have less pain and cramping at the sight of astimoses....spelling lol.
Posted 3/24/2016 9:31 PM (GMT 0)
How your son doing? What was the extent of the surgery?
Posted 3/25/2016 12:12 PM (GMT 0)
FINALLY got to the computer (these days just BLEND together with no start or ending). The surgery was SOOO successful. Prior to going into the surgery his surgeon said he had looked at the latest CT scan and said "I will probably be taking out more than I thought - it looks longer." (Originally he said a foot). He also said the surgery would be "about four hours." It was done under two AND it was only four inches! YAY! He is in day three of recovery and in pain but is starting to eat....! Thanks to all of you - I am sure I will post post operative questions but for now it is good to see my son smiling and knowing this surgery is now behind him!!
Posted 3/25/2016 1:06 PM (GMT 0)
BETTYSUE - I am so glad for both your son and you! Wishing gentle healing and a long remission for him!
Posted 3/27/2016 2:35 AM (GMT 0)
So happy to hear he is doing well, and had less extensive surgery than originally planned.

Now it's time for momma to rest!
Posted 3/27/2016 2:19 PM (GMT 0)
Amen to that! Reading the Sunday paper with my feet up!!
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