Crohns to Small Bowel Cancer to Colon Removed and on TPN Daily - Anyone out there similiar?

Hello,

Trying to find more information/help for my daughter and son in law. They have gone through so much since 2010. Son In Law just turned 30 May, 2013 he had Crohn's since he was a child and since 2010 we have been living every day, one day at a time.

In 2010 he had to have a small bowel resection and when it was tested it came back that he had small bowel cancer also. The kids went to various specialists and most said to go on Chemo that is used for Colon Cancer because Small Bowel Cancer is very rare. However, since he just had the major surgery of bowel resection and just finding out he had cancer no one wanted to open him up again. This first surgery was to make him feel better and eat again. Two weeks after that initial surgery in 2010 he got opened up again because he fell while going out and it ripped his peritoneum and you could see his organs through the incision. It was an actual blessing that he fell because he had to go in and get that fixed and while they were in there they took out more small bowel that had cancer in it also. He was on chemo for 1 1/2 years and did well on it. The kids were then trying to conceive by invitro at that time also.

The start of 2013, January he was having problems again and kept throwing up and went into the hospital for a month with tests that showed a blockage of which they thought was Crohns again. He also had testing while on chemo that came out good and some other test that I do not know the name of but it measures sugar on cancer if it is present but since he has Crohns it was hard to distinguish both. He had another resection though they did everything they could to not open him up again. Surgery was almost 4 hours with bad news again. The surgeon said this time it was not Crohns but it was small bowel cancer that returned and also, it is Stage 4 that spread to his peritoneum. When his mother asked "Doctor am I going to loose my son?" the surgeon said NOTHING. We didn't let him know when he woke up from his surgery, we were all going to go there the next day and tell him. Well, after January of 2012 he had to go on chemo again and it has been very, very very very hard on them and the entire family. Skip to May when he had a test and it showed 'bubbles' in and round his colon they decided to remove the entire colon. I do not remember why they exactly had to do this but I think it was because he could get a colon rupture and he would die immediately. He then had an illestomy (spell?) and only less than one foot of small bowel left. Since May he has to be on TPN daily because now he has short bowel syndrome and cannot absorb nutrition.

I don't know if I typed everything in the right order or proper punctuation and misspellings (sorry for that) but I have never seen such strength and courage and determination as my wonderful son in law. He is loved by all and is the kindest human being and my daughter is the most wonderful wife and takes care of him daily (after she gets home from work). She works at a hospital as an x-ray tech so thank God her insurance is great. With the surgery in May it was actually good news, the surgeon said he didn't see any cancer! we all never felt better in our lives to hear that news!!! he had to go on chemo again and be on TPN daily but no cancer news was a blessing. Since May he has been loosing weight, dealing with some (but not much infections with IV cath/tube ? in his chest) and also with not getting dehydrated. He can drink 5 gallons of fluid a day and still be dehydrated. he also eats like a horse while still on TPN but since he has small bowel syndrome he cannot absorb nutrition or fluids. Also, some problems with his stoma.

Since about 4 months his liver enzymes have been high and now very high. I have read that TPN is very hard on the body - liver and can cause liver failure and we are all scared again. I have also read that some people do perfectly well on TPN and one story a woman was on it for 35 years! but then again I don't know the extent of her other problems/disease.

I am wondering if there is anyone out there that has anything similar or has heard about anyone in a article, etc.? Also, if there is some specializing hospital in the U.S. for TPN patients/complications. The doctors here are stumped on what else they can do for him - I just heard from my daughter because I guess they are quite shocked he is still living and breathing. Also, Mayo Clinic didn't have any answers either.

Thanks for reading and for any info. I really appreciate it.
Donna

There is one guy here with short bowel syndrome (solely due to Crohn's, no cancer involved) and who has been on TPN for 13 years. He hasn't posted in a long time unfortunately :-/

There is also a UK guy called Michael Seres who had a small bowel transplant for Crohn's and short gut syndrome, and who was on TPN for years. He has a website: www.michaelseres.com/. Maybe your son-in-law could consider having a small bowel transplant...?

I'm sorry, I don't have anything else, but I do hope your son-in-law can find the specialist care he clearly needs :-/

Edit: Great minds think alike... >.>

Post Edited (NiceCupOfTea) : 1/7/2014 3:58:30 PM (GMT-7)

Thanks Ides. I hope he comes and says hello.

Randynoguts, yeah, that's his name.

I hope he does post, partly to hear that he's okay and partly because hopefully he can offer advice that we can't, really.

Thank you Randy! So much.

We live in the Western Suburbs of Illinois. In Willowbrook.
That is so wonderful to hear that you are doing well and on TPN for 14 years! that is incredible! - and so hopeful for Ronnie. I believe he is also on antidepressents - he has been since he was diagnosed with 4th stage cancer. Right now the cancer is in remission - but the TPN is working over his liver. Shelley, my daughter makes him special hydration drinks daily but I do not believe he drinks them the way he should or eats the way he should. He barely urinates once a day and it is a very dark color so whatever fluid he is drinking is not being absorbed in his body, it just comes out in his bag, as with food. My daughter is the one that reads and reads and tells him what to do as far as how to eat and how slowly he should drink. He doesn't listen. probably with the chemo he is on he is just so thirsty. He says he can just drink an entire gallon of water (which is not good for him) because he thirsts for it so bad. He has been on TPN daily now since last May, 2013. The doctors have told him how to eat and drink but I think he really doesn't listen much. (My daughter tells me). His output (in his illeostomy bag is way too high. We all understand why he is depressed and he should be able to do what he wants, but when it can come up to life or death, he will have to listen to the doctors on how to eat and drink.

Ronnie only has about less than a foot of small intestine left and no large bowel. My daughter plugs him into the TPN daily, mixes the lipids in it when they are supposed to be given, he also gets hydration every other day too. He unplugs himself before 10AM every day. We all did go on a trip to Disneyworld last September and then they went on a cruise - they worked out the planning and did well. That was when he was feeling quite well even while on Chemo it just seems the longer he is on the TPN the more it is injuring his liver.

He was supposed to go to Chemo today but the Oncologist noticed his eyes were yellow so they sent him home - and that got him really scared. Tomorrow they have any appointment with a woman at a University Hospital that specializes in Small Bowel Syndrome and TPN. I believe her name is Dr. Sedman (spel?) If you have any info on any doctors in the area that would be great. Also, The kids already traveled to Mayo so it is not out of the question to go somewhere else for some advice.

Again, thank you for writing so much and I wish you continued good health and happiness and I am going to tell my daughter about you and see if she has any questions or wants to talk to you.
Take care,
Donna

Donna, Since you are new here I wanted to tell you how to access Randy's email in case you don't know how to. On Randy's post, look to the left under Randy's screen name randynoguts. There are two like picture icons, the one on the left of an envelope. Click on that and Randy's email address will pop up.

Also, Randy is sincere when he says he will talk to your SIL or daughter or you. I can vouch for him. He's a very nice, open guy. I have met him in person and he lives one town from me.

She hasn't been signed in here for a week, Randy. Hopefully she will try to get into touch.