Can You Live Without a Small Bowel and Without a Colon?

Hello, My Son In Law is in the hospital again. This time they had to take out his colon and he has an illestomy and two years ago had to have a small bowel resection because of the Crohns and they found cancer. This past January he had more small bowel removed and they said he had stage 4 small bowel cancer. This time, he had surgery last week because he had air in his abdomen and they said they had to take the colon out. He now has the allowed small bowel left in order to live and he has not even healed yet and again has an obstuction in the small bowel, that the doctor's are saying is from active Crohns still in his small bowel. My poor, poor son in law can't get a break. What now? What if he needs more small bowel taken out? How can he live with no Colon and not enough small intestine to absorb nutrients? So much, too much. He just turned 30 2 weeks ago. When the surgeons opened him up last week and came back to us he said he didn't see anymore cancer, but now he has active Crohns again. We all can't believe it.
Does anyone out there have small bowel syndrome without a Colon? Can you live? He can't even heal from his surgery last week. We are all going out of our minds. Sorry if this email is jumbled up but I can't type as fast as my mind wants me to and I may not be clear on everything.

-2 Years ago he had about 3 feet of small bowel removed, they found small bowel cancer.
-Went on Chemo for 6 months, was fine until this last January (2013)
-January, 2013 went into surgery for an obstruction and they found cancer, stage 4, been on chemo since end of January
-May of 2013 (present) he had to have his colon removed because they found air in his abdomen all throughout his large intestine.
-They took out the large intestine, has stoma and they took out one other bad part of small intestine because of active Crohns. Doctors said he has just enough small bowel to live.
-Now, present he has an obstruction and is recouperating from his surgery from taking out his Colon. They are going to try to go
through the stoma tomorrow to see if they can find the obstruction.
Thanks and God Bless

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Hi. I'm sorry that your son is going through so much. You must be an incredibly strong woman to be able to support him as you do. At one point, my surgeon was going to do an enterectomy (removing the remainder of my small bowel) due to CIP. I was very fortunate in that they did a small bowel tapering surgery that prevented the necessity of the enterectomy -- my miracle. The point is that they were going to leave me with my stomach only -- no intestine at all -- and felt that I could live many, many years on TPN. I know there is one woman on the site who's been on TPN for 17 years with very few complications. So the short answer to your question is, yes, your son can live even if he loses all of his intestines. He won't be able to eat, but he'll be free of the pain of obstructions. And, down the road, there is an intestinal transplant to consider if he develops problems with long term TPN use. So don't give up hope. He may still have a miracle in his future.
Love and Light, Candace

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Hi Concerned MIL - he is so fortunate to have a someone researching for him! I have had Crohn's for almost 30 years. I had 2 bowel resections years ago to remove most of my large intestine (leaving only rectum and anus) and lived fine until January 2010 when I had a bowel obstruction that ruptured by the time the Dr could get in to correct the obstruction. He had to remove almost all of my small bowel and left me with a jejunostomy and some extra small bowel connected to the remainder of my large bowel. A jejunostomy is an ostomy at the upper portion of your small bowel. He told me I was going to be on TPN for the rest of my life but I could eat whatever I wanted. In September 2011 I had the 2 ends of my small bowel reconnected and give an ileostomy, leaving me with about 2 1/2 ft of small bowel. Since then I have weaned completely off TPN (but still get daily hydration fluids), watch my diet (no refined sugar) and drink fluids that are aimed at keeping me hydrated. My goal after having the last surgery was to reduce to maybe 3 days of TPN per week, I never expected to completely eliminate it. Everyone's body is different as to how there small bowel works and body reacts to different treatments.

Do you now how much small bowel your SIL has left? Is he on TPN? Along with learning how to deal with the ileostomy and gaining strength, he will eventually learn what foods and beverages bother him. It's a learning process for all of it. He's been through a lot and will need time to adjust to everything. When he is ready, this is a great place for him to chat with others about things he's experiencing or just lurk and read about how others are dealing with everything.

I hope he can get his Crohn's under control and get healthy. Feel free to PM me if you have any further questions. I wish him well - lilpeeps

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As Lilpeeps asked, is he on TPN? I'm not sure what the minimum amount of small bowel needed to live is, but my son has less than a foot left. He does have a colon, and an intact ICV. He did need TPN to survive though. Now, he just uses a g-tube. But I imagine, with TPN you can go with very little bowel, and no colon. He is very blessed to have you.

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Thank you lilpeeps for your kind words. You have been through so much also and pulled through it - that is amazing and wonderful for you and encouraging to hear for us!

The Doctors said he has just enough small bowel to live, which means about 3 feet I am thinking, but they also said that he has a diseased part that is acting up right now and he has an obstruction. I get my info from my daughter and she works at the hospital and an X-Ray tech. - she also has been by They said it is close to the illeostomy so they want to go through the stoma today with a scope to look at it. About two days after his surgery last week he was allowed to start eating solid foods at the hospital and then he started feeling nauseous and then started throwing up. Finally yesterday they did a CT scan and that is when they found the obstruction. I just can't believe he can't get a little break until he heals - to again have more to deal with.

Upon looking on the internet more and more I/we (and I don't think my daughter, his wife) didn't know you can have complications with having to be on TPN. In my reading I am finding out about it. We are just being hit with all new stuff. Yes, he has been on TPN non-stop at the hospital. He also started getting elevated liver enzymes but they think it may be from the strong anti-biotic they were giving him which they since then have stopped as of yesterday.

Only good news from last week was when the surgeon said he didn't see anymore cancer - also he said the cancer spots on his peritoneum were gone!

The doctors also think that one of the add-ons to the chemo caused his colon to get damaged - it heals one part and then damages another. Also this young man seems to get every side effect that comes with taking medicines.

At this point, they are not researching and have not in the past. In January they were both in shock and depressed after we got the "Stage 4" news that they didn't even want to see any results of any of his tests taken after chemo. My daughter has gotten better and she is the one that has to work but Ronnie - well, I understand why he was depressed. Ronnie is blessed with having a large loving family that went into gear taking them to other specialists and even to Mayo Clinic. (Mayo clinic said there are no new treatments for colon cancer - small bowel cancer is rare so they treat it the same as colon cancer).

My daughter works at the hospital where he has had his surgeries and has been by his side 24/7 taking time off. She is an X-Ray tech there and thank God she has good insurance but they still have to pay alot and I don't know how they are doing it.
I guess there is not much I can do for them except to be there and offer encouragement if I hear some (from stories I read) but I also take care of my Mom after work so I can't always go there to be with them. From reading stories on hear the next fear is from the TPN and I/we didn't know that there were complications with that. I am not even going to tell her/them at this point until they find out what can be done with the blockage.

I am at work so it is very hard to write - again this letter is not in any kind of order - sorry if it is hard to read.

Thank you again for writing. I will keep you posted if you like.
Again, thank you so much for your story - it is very encouraging and gives us hope.
CMIL - Donna

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Thank you Candace for your encouraging words! You also have been through so much and have been blessed with a miracle.

- please see other post for some history.

My daughter is the one that is the wonderul one. She has been at his side 24/7. I cry thinking about what he is going through and cry also thinking how wonderful, strong and loving my daughter is.

One thing i wanted to ask what is CIP?
Thank you again so much (have to get back to work for a while)

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Thank you Mrs B. Please see other posts.
Wow less than a foot left of small bowel, that is incredible. Your son and you have been blessed with a miracle also. Glad to hear he is doing well.

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I guess my point is............Don't listen to the doctors:) They told me my son was going to likely die........he's stubborn, he didn't, he's here driving me nuts. They told me he would never eat by mouth again..........again, they were wrong.....they haven't seen my grocery bill. They told me he would never get off of TPN, again, they were wrong. I am not saying it was/is easy. At times, like this week, I get very angry and bitter. The best thing you can do for yourself, is stay here, and don't research the internet. They use the statistics that they are given. Here you see the "real" statistics that we are living with. If I had a dollar for each doctor that has said to me "That doesn't happen" I would be able to pay cash for his college education. Welcome, and stay in touch.

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Hi, there. CIP is chronic intestinal pseudo-obstruction. I get obstructions that show a distended small intestine on the CT scan, but with no focal point of obstruction ... they are functional, not mechanical, obstructions, and surgery cannot clear them. I just get put on an NG tube and we wait for the "obstruction" to clear -- in other words, for my small intestine to start working again. It can be a matter of days or even weeks. I'm on TPN 24/7 while in the hospital with one of these, nothing by mouth. The problem is real, and the intestines can rupture from the pressure without the NG tube going, and since I also have had a couple of real -- mechanical -- obstructions requiring emergency surgery, these pseudo-obstructions cannot be ignored. Fortunately, they've been few and far between since the bowel tapering surgery and the medication regimen that I am on. CIP is a progressive disease, and my tapered intestine is showing distension again on the CT scans, so one day I'll be back where I was before, spending more time in the hospital than out and while at home hooked up to suction through G and J tubes. But I am making the most of the quality time that the tapering has bought me, and nobody knows how long it will take for the CIP to progress to where an enterectomy will be the only option left. So I just thank God for each good day that I have, and take it as it is from day to day.
Love and Light, Candace

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MrsB, Thank you and you are definately right there. It is not good to research things on the internet - just makes you more scared.
I just heard from my daughter that they went into the stoma with a scope and it looked like it was looped and there is no obstruction! and also no crohns (for right now...) Can't tell you how happy we all are. We always thought the worse cause that has been how life has been. Maybe poor Ronnie can concentrate on healing now and get out of the hospital instead of thinking he will not be ok. Also, he always was a fast, fast eater - he will have to learn to not eat that fast. My daughter said she checked his bag and there were hard pieces of beef in there - he can get things stuck in the stoma. 2 days after they removed his large intestine they gave him regular food - turkey breat and a hamburger.

Bless you and your son so glad he is doing well!

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Candace,
Wow have you had this since a young age? What you went through sounds horrible. I hope and pray that you remain well!

Ronnie has a NG tube in his nose now also - since yesterday. If you check the other post I wrote that he just had the procedure that they went through his stoma to look and they found it looped with no obstruction and no Crohns (for now). We are so very happy. Now he can get onto healing and feeling better. One day we are happy and upbeat and how quickly the next day can change...

Please take care and keep in touch.
Donna (CMIL)

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