Has Anyone Had an Ileus?

[SLK]

Hi-
My Mom was diagnosed with Stage 1 rectal cancer back in May and went though 3 chemo sessions of Campostar, and 3 weeks of radiation, and 3 weeks of Xeloda (taken twice a day, 5 days a week). She found herself in really bad shape, so they stopped all chemo and radiation. She had no appetite, major stomach cramping and diarrhea, and became completely dehydrated. She was getting daily IV fluids and had a couple of standostatin shots, but wasn't getting any better. After about a week of this she was admitted into the hospital and they determined she was low on potassium. Her stomach is bloated, she has hiccups, nasusia, and still has diarrhea, but it is better. The Oncologist thinks there may be a possible obstruction, but a surgeon doesn't think so. They've done a test to trace the movement of her intestines, and the X-rays showed the dye made it through her gut, just really slowly. Seems unlikely that she has a true obstruction... SO, if it's an ileus, it will supposely resolve itself, but when? Has anyone ever experienced anything like this, or do you know of anyone who has?

Thanks so much!

[weisssoccermom]

Hi there. I never experienced anything like what you are talking about. First of all, are you sure it was stage I? Campostar is only approved for colonrectal cancer that has spread and only in conjuction with infused 5FU. That would be a stage IV cancer. Also, stage I is not recommended for radiation because of numerous reasons. One would be that the tumor is small enough and that the toxicity from radiation would outweigh any potential benefit-surgery would be done as first line. You don't like to have to utilize radiation if you don't have to. Secondly, usually Stage I only needs to have surgery. Very rarely is it followed even by chemotherapy. Chemo after surgery is routinely reserved for either stage II bulky tumors or stage III/IV which would involve lymph nodes or spread. I would honestly check with your doctor about these inconsistencies. If these treatments were prescribed for a stage I tumor, then I would be VERY upset that this treatment was wrong for the stage and would possibly be more traumatic than just having the surgery. When was the surgery planned for? What type of surgery was planned? Was any surgery planned originally?
I would get another opinion on what has been done to her so far, because it seems way too much and totally out of line for stage I.
Please seek another opinion from an onc not affiliated with yours.

[SLK]

Thank you for your reply. The biopsy on the growth was first "precancerous" and then turned out to be cancerous when the biopsy was done after it was removed. The scans a month later showed questionable areas at the site, so she went in for a 3rd biopsy which came back totally clean. The surgeon told my Mom that many oncologists would not treat this, but recommended treatment as an "insurance policy" to hopefully prevent it from coming back. She took his advice and consulted an Oncologist she knows well, who developed her treatment plan. She's decided not to go foward with any additional treatment since it's done so much damage. She's been in the hospital a week now, and is still not much better. We'll definitely consult other Oncologists when she feels better, but right now my concern is the damage this has done (and how long it will take to heal).

[weisssoccermom]

Hi again,

I went through 5 weeks of Xeloda and radiation and had similar symptoms but not so severe. I think that she is smart not to continue with any treatment until she figures out what is going on. Xeloda & radiation can give you diarrhea and gas and it is not at all uncommon for symptoms like that to last for about two weeks after radiation has ended. It is somewhat unusual for the symptoms to have started this early in her radiation and become this bad, but each person is different. The gassiness and particularly diarrhea come from the fact that the chemoradiation is/has killed off all the good bacteria in your intestines as well as any cancer cells (hopefully!) One thing that helps immensely is to replace that good bacteria. You can eat yogurt until you are blue in the face, but you really need to get some lactobacillus. I found something at either WalMart or Walgreens in the antacid section by a company called Digestive Advantage for Irritable Bowel Syndrome. It is just the enzymes and bacteria that the chemoradiation has killed off. I verified with both my onc and rad onc that it was okay to take this. I took 2 in the morning and 2 in the evening and while I still had a little diarrhea, it was much better. Also, tell your mom to eat a very easy diet. She will remember the BRAT diet for diarrhea (bananas, rice, applesauce & toast) from your younger days. Also, white bread is good or those Pillsbury biscuits, breadsticks, etc. Stay away from fresh veggies and fruits (bananas ok), nuts, whole grains, etc - anything with too much roughage. It will kill you when you are going through this and just make a bad situation even worse! Have faith, it does get better. Hopefully she didn't get burned during radiation.
Again, I would wonder what type of surgeon and or oncologist would recommend this protocol for someone with stage I rectal cancer. They put your mom through hell for nothing. She needs to get the tumor (or what is left of it) out before they do more damage to her. Then wait for the pathology report and then see what the next step is. Hopefully they haven't done anything that will preclude her from any specific surgery. Consult a colorectal specialist-not just a general surgeon. If it is a Stage I, there are numerous choices out there. Be prepared for all the different options.
If you want more infor on the different options, please email me at weisssoccermom@hotmail.com
Tell your mom I know how she feels. It stinks (no pun intended!) but it will get better.

Jaynee

[SLK]

Thank you so much for sharing your experience and advice. She and I know this will get better, it will just take some time. My Mom has always had a hard time with drug side effects, even antibiotics, so she may require more healing time than others. Hopefully the worst is over!!!

[Guest]

Hi,
I also had stage 1 rectal. I was treated by surgery alone (j-pouch). If the tumor is fairly large or close to the sphincters they will sometimes do pre-operative radiotherapy to shrink the tumor ('debulking') to allow sphincter sparing surgery. Being stage 1 means that the tumor has invaded the inner layers of rectal tissue, but not penetrated the muscle wall, and can be of any size.

Do you know what type of tumor it was? It would be quite unusual to treat a stage 1 adenocarcinoma with chemotherapy, but if it had unusual clinical features then the protocols might be different (for example was it an anal cancer in the rectum, or a squamous cell carcinoma?). If you can find out these things from the oncologist, you can then ask for their justification for the treatment plan and the guidelines they are using. This would hopefully give you a better idea of whether they are using an appropriate treatment regime.

You can find some good information about staging and treatment at www.cancerhelp.co.uk and look up bowel cancer.

As for an ileus, I've had several! The best thing I found to help this along was a combination of gentle exercise (walking is good), a heat pad on the abdomen (not too hot though), and frequent hot drinks such as herbal tea (again, not too hot). All of these things stimulate the bowels so they might be useful. Also, trying to stick to cooked foods (nothing raw) I found helped.

I hope you find this information useful, and that everything goes well

[Rui]

Hi SLK, yes I had ileus, 3 times:

1st time: about 5 days after surgery ( doctors thought of a ileus from after surgey adhesion ), had to put nasogastric tube, used it for a fwe days.

2nd time: maybe 6 days after taking out the nasogastric tube and eating ( this was really worst because i vomit and they took out alot of fluid throught the tube, about 1 and half week with tube )

3rd time: eating for 3 days, i got home, but 24h later i was there again for the same issue, spent a week there

Note: every time i had it it was showing that it seemed that it would resolve by itself, at some point they told me that if keep losing weight has i was they had to open me and resolve the ileus problem.

But thank GOD, after that 3rd time ( april ), i went home and never got ileus again, i think my prayers were listen, i was very weak with this.

Now i'm eating almost any type of food with no problems and gaining weight.

I hate naso tube!!

Last note: if something is passing, that's good news, it's a parcial obstrution, and i believe and have faith that it will resolve by itself, I so 2 more cases with ileus that resolved by itself, have faith and positive attitude.

[SLK]

Thanks everyone for your comments. After a week in the hospital with no change, they performed surgery today to rule out an obstruction and confirmed their original "guess" that a portion of the small bowel is damaged from the radiation. They said it will repair itself "eventually," but who knows when. They told her not to eat until the inflamation subsides, so she's receiving TPN. All of this after only 3 weeks of radiation In her case, she would have been better off without any treatment at all, or at least no radiation. I guess it all affects everyone differently, it's just unfortunate that it's impossible to predict what will happen until you actually go through it.