Understanding Ileostomy Complications - Seeking Advice for a Friend

I do not have an ileostomy myself. However, I have a dear friend who does, and she's in the hospital right now. Unfortunately, a few years ago, her gastroparesis had done so much damage she had to have her colon removed, and she now has an ileostomy. Her small intestine over the years has lessened in function as well, and the function is low. I think I understand the severity of that situation. I just don't want to say it. She was taken to the ER today and has been diagnosed with an obstruction/blockage. So far, I understand the doctor believes she has bad scar tissue. The doctor wants to avoid surgery. A tube has been put down into her stomach to drain off everything to relieve the pressure. She'll be kept overnight for sure.

My fear, and I don't want to cause any stress on any of you here who are suffering with health struggles, but I thought perhaps you can help me understand things better so I can be a better friend to her. Do you all understand? Please forgive me if I ask a wrong question.

The doctor, like I said, wants to avoid surgery. I mean, can the scar tissue become so large as to cause her to have to have surgery to remove it? If so, won't it just grow back larger and with more troubles?

What is she realistically looking at? She's a single mother with a 12-year-old daughter. I'm already concerned that her small intestine is becoming less operable. She did say to me if the small intestine stopped working, well, you can't live without it.

Hey, what type of hospital is your friend at? Big? Small? Research/teaching? Does she have a good, and by good I mean amazing, GI motility doctor? What you described sounds like an NG tube that she has in place right now. They're miserable, but tend to do what they need to do. Do they know the cause of her gastroparesis? I'm going to message you a medication that is marketed for something else, but they are seeing it help (in research studies) with esophageal and bowel motility. Based on the little I know from what you've said, there is a lot they can still do. Is she on TPN? What did her diet look like before the ER visit? Does she have local family support for her daughter? My kids are around the same age, and both of mine are going to therapy after how sick they saw me get last summer. As much as we hear kids are resilient, they're not made to carry adult burdens, so it's good you're concerned for not only your friend but her daughter as well.

The small intestine cannot be completely removed. Only the colon can be completely removed.

The small intestine is 22 feet long. Short bowel syndrome (SBS) can occur if a majority of the small intestine is removed. The minimum it can be surgically trimmed down to is 4 feet. This length will cause SBS. Patients with short bowel syndrome usually require supplemental fluid and sometimes intravenous nutrition therapy because only the small intestine absorbs nutrients and electrolytes.

There are ostomates on this website with SBS. Hopefully, they will view your post and provide real-life answers.

You can also search through the discussion forums for past SBS discussions.

I am so sorry to hear that your friend is going through this. Your wanting to help her is amazing, and she needs you. It sounds like her daughter needs you too. Can you be there for her as well? I don't know the answers to your questions, but maybe someone here does. I think you are right that you need at least a small intestine to live, but I have heard on here of people who only have 3 feet of their small intestine left and they are living. So don't lose hope.

Prayers are with you,

Lee

I'm sorry to hear what you and your friend have been going through. You've come to a good site where people have gone through very similar things and are willing to share their knowledge and experiences, but we are not doctors (although many should be). I myself have gone through what your friend is experiencing several times. The scar tissue is also known as adhesions. That's caused by the surgeries that we have gone through and is unavoidable. The blockages could be caused by the scar tissue, or it could be caused by just the intestines moving around and pinching off temporarily. When this blockage passes, your friend will just need to be careful what she eats. When I've had this issue in the past, I've had to avoid things like peanuts, wild rice, and cooked broccoli (but not raw broccoli— weird, right?). There will be a lot of people that will share their stories, or you could look up a lot in the archives on here regarding blockages. Your friend may want to reflect on what she ate prior to this blockage to see if it was something that may have caused it.

Good luck. I will be praying for you.

Cplumber

Feel free to ask other questions if I missed anything.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Thank you! That helped inform me and helped me to know that I need to really encourage her. I think she believes at times that her life will not last very long. You've helped me know what to do.

I had no idea the small intestine was that long. I know she has had multiple, I mean many, surgeries; how much involved the actual small intestine, I don't know. Thank you.

Thank you for your reply. Is the medicine Motegrity? I only ask because I have gastroparesis, but it is not nearly as severe as most. I'm on Motegrity because my GI says it not only helps with bowel motility but also speeds up the motility of food in the stomach. If it's not that, please share. Thank you.

She also has the internal pacemaker or stimulator.

She's at a research hospital. Her GI and colon surgeon are supposed to be great. I don't believe they know what caused her gastroparesis. No diabetes. I do believe there were so many years of suffering before she was diagnosed that a lot of damage was done prior to diagnosis. I won't go into it, but there were reasons that she was not taken care of. She has no colon/large intestine. Apparently, her small intestine is functioning at a low level. I didn't put it together, but now knowing how long our small intestine is, she must have lost some of it previously. She is pretty careful with her diet. No raw fruits/veggies, salads, etc. I really don't understand the difference between an ileostomy bag and a colostomy bag. Why is one done over the other?

I asked her if she has any idea what may have happened to cause this issue and she cannot understand why.

She did tell me tonight that they may not want to do surgery because of a chance of damaging the small intestine. Am I correct that you cannot live without your small intestine? She has mentioned something about the low function of her small intestine and if it gets much worse, it won't function enough. Hospice?

Does it sound like I've understood what she's saying?

There is a lot I don't understand about gastroparesis. Mine was probably from a prior abdominal surgery—perhaps my gastric bypass or having my gallbladder removed.

Thank you for your reply. Is the medicine Motegrity? I only ask because I have gastroparesis, but it is not nearly as severe as most. I'm on Motegrity because my GI says it not only helps with bowel motility but also speeds up the motility of food in the stomach. If it's not that, please share. Thank you.

She also has the internal pacemaker or stimulator.

She's at a research hospital. Her GI and colon surgeon are supposed to be great. I don't believe they know what caused her gastroparesis. No diabetes. I do believe there were so many years of suffering before she was diagnosed that a lot of damage was done prior to diagnosis. I won't go into it, but there were reasons that she was not taken care of. She has no colon/large intestine. Apparently, her small intestine is functioning at a low level. I didn't put it together, but now knowing how long our small intestine is, she must have lost some of it previously. She is pretty careful with her diet. No raw fruits/veggies, salads, etc. I really don't understand the difference between an ileostomy bag and a colostomy bag. Why is one done over the other?

I asked her if she has any idea what may have happened to cause this issue and she cannot understand why.

She did tell me tonight that they may not want to do surgery because of a chance of damaging the small intestine. Am I correct that you cannot live without your small intestine? She has mentioned something about the low function of her small intestine and if it gets much worse, it won't function enough. Hospice?

Does it sound like I've understood what she's saying?

There is a lot I don't understand about gastroparesis. Mine was probably from a prior abdominal surgery—perhaps my gastric bypass or having my gallbladder removed.

Thank you! Yes, my husband and I help her with her daughter. She is our neighbor, and we've all gotten very close. I'm 20+ years older than my friend, so I guess I feel a little responsible for her, you know?

It's wonderful that you want to be there for her and her daughter. I know she values that a lot, and I don't even know her. It is amazing what the body can do and can put up with. Don't lose hope.

Lee

It's not Motegrity, I messaged you ☺️. I failed Motegrity along with every other motility medication available in the US and was on three at once as a last-ditch effort. Has your friend been tested for nerve diseases by a neuromuscular neurologist?
There are a lot of different reasons someone might have a colostomy versus an ileostomy and vice versa. Your friend can never have a colostomy since her entire colon was removed (when you say no colon, I'm assuming her rectum and anus are gone too?). If you see 'colostomy,' that person has an ostomy that empties from their colon (some people have a lot of colon, some a little, just depends on the reason it was removed in the first place among other factors). If someone has an 'ileostomy,' a lot of the time it is because their colon was removed or if it's temporary because all or part of the colon is getting a break while it heals and the part of the small intestine (ileum) is as low (think distal feet) as possible so their body can absorb as many nutrients as possible—that's a very brief, non-scientific explanation.
Is the pacemaker/stimulator on your friend's stomach? I was told when I was still looking for options for my colon the 'pacemakers' they had tried created more blockages and emergency surgeries—that may be something for your friend to ask.
They can do small bowel transplants... my roommate during my last surgery had one... she was something else. There are some surgical options for the stomach as well. Has anyone said 'hospice' to her? Or was she just telling you that her options are limited?