Just diagnosed with Stage IV

JohnP2

Hello, I am new here. 52 year old male. About 7 months ago I noticed I was getting constipated, thought I was not drinking water. it got to the point I was having to be on a clear diet taking osmotic laxatives to have a bowel movement.

I ended up going to the ER due to a blood clot jn my vessels gojng to my heart (PE). After they did the cat scan they informed me I had a “large mass” (~9cm) in my transverse colon and it looked like the tumor had spread to my liver. Metastis (sp?)

About a month ago I had an Exploratory laparotomyi where essentially they removed the mass (along with that part of the transverse colon) and reattached it.

oddly I did not have a bowel movement for six days after the surgery (I was unable to bear down) but after taking Miralax I did).

I started doing okay after being discharged but about 2.5 weeks after the surgery I noticed I started getting intense stomach pains when I ate. these would last for a few days go away and come back

for the past week anytime I eat I feel like I need to do a bowel movement the problem is 90% of the time I can’t I will sit and squeeze and squeeze, periodically passing a pencil thin stool or two. What is odd is I will actually gain some relief but usually within 15 minutes I feel as if I have to go again

usually when I wake up I get a great urge to go and I feels like all the suffering from the night before is released (lots of exploding gas, and quite a few (~20) mini sized logs (normally each one the size of baby carrots)

i have gone back ti a liquid diet and taking a small amount of osmotic laxatives (Milk of Magnesia) simply so at a minimum I can keep the stool soft to release However the stomach aches are intense (enough to keep me up at night) I don’t go to sleep..I fall asleep once my body is too tired I wake up, intense urge to release, and I go As soon as I eat something (as in within a minute) I suddenly feel then need ti have another BM but just cannot

unsure if I have stool that is there and truly still needs to come out, ior if it is just a sensation

what is frustrating is I suffered with this before they removed the mass For weeks after they removed the mass I was symptom free but not it has come back even worse

I am meeting with my Oncologist Wed and this is the most important topic AFAIC. As in this is beginning to consume me every waking hour and becoming torturous

any thoughts suggestions on what is happening?

thanjs!

SandiaBuddy

The body takes a while to heal, and most people seem to find improvement with time, but there is also the status of "new normal" which often takes some adjustment.

I have found that a teaspoon of pysllium (I take Yerba Prima) in the morning helps keep things moving along more normally.

Just a thought, but a period of simply observing the ebb and flow of your body without trying to control it might offer some insight.

Some board members have found that diet effects their digestion significantly, personally, that has not been the case for me.

The punches in the gut at night and the gas (probably related) are something I have dealt with since surgery. For me, I accepted it as part of "new normal," but recently I tried taking one sucralfate (1 gm) before dinner which has let me sleep most of the night and postpones the gas until about when I get up in the morning.

Board members find various strategies help with pain relief, from meditation to marijuana to medication. I find "male valium" (beer) to be the most effective pain reliever for me.

It makes sense to tap your doctor's knowledge of medical approaches to these issues, but the only answer I got was "we are not concerned about gas and we are happy that things keep moving through," not much consolation when you feel pain. You may find that personal experiences and experimentation will lead to the best approach for you.

Hopefully, others will contribute their experiences and strategies, but the board has been very slow since it was "re-organized," which alienated many long-term participants.

Best of luck to you in dealing with these issues. Keep us posted on how it works out for you. Many people read and learn without ever posting.

JohnP2

Thank you for the response. I plan to talk to my Oncologist as I don’t see how I can go on like this. Essentially, for 18 hours per day I am trying to go to the toilet at least every 45 minutes. I have tried everything to fight through the pain (pain medicine, sleeping pills at night, various stomach RX I have been given). Some days it is not as bad but I have been in a stretch for about 6 days now with no relief. I don’t see how this can be in realm of normal at all.

it is also a double edged sword as the only way I can “truly” relieve myself is when I wake up. I will usually drink water or a protein shake and then I within a few minutes the urge overtakes me. I get relief but within t the hour it is back to needed to go again with nothing

there has been many a night that I have been unable to sleep at all due to the pain I pray, I meditate, I try everything to get it to subside but the pain is often too much I’ll get up, MAYBE squeeze out (as in 5-10 minutes if squeezing) a small pencil thin piece, get a little relief and the cycle starts again

JohnP2

One other thing that is incredibly odd. Prior to the removal of the mass, I could take Milk of Magnesia and have a BM within 1-3 hours no problem. As in each and every tjme.

Now, eating the exact same amount of the same food taking the same dose of Milk of Magnsia…It no longer triggers a BM. It triggers the feeling of needing one but the only think that happens is when I wake up (and go) the stool is liquified. I dunno. This is so torturous for me I’ve not even had the chance to wrap my head around my diagnosis etc as this has consumed almost every waking moment of my life it is that bad.

I will try looking at the two items you mentioned. pysllium and the sucralfate. What worries me about the latter however is I don’t want to postpone the gas as when I pass gas I get a lot of relieve. It’s just a matter of my body producing it and moving it through my colon ti be passed.

SandiaBuddy

A couple of other thoughts. You might want to have the doctor order an H. Pylori test. Never hurts to know. Also, you might experiment with cimetidine and/or famotidine. Both are available OTC and the cimetidine likely has an anti-cancer effect, particularly when taken close to surgery. New article on Cimetidine — Cancer Survivors Network Cimetidine? — Cancer Survivors Network

For me, the surgery changed the dynamics of my digestion, so changes would not necessarily be a surprise.

It is obvious you are in great distress, which demands relief. I hope that with time, research and experimentation, you will find the solution.

Trubrit

Hello, and welcome to the forum.

Sorry to hear about your woes. It all sounds very uncomfortable.

I hope you get to talk to your Oncologist soon, as that would be the first thing I would want to do. Get professional advice, for sure.

One thing that comes to my mind, and please forgive me, as I'm forgetting all of the technical terms, but, there are nerves around the rectum/sphinter/anal area, and if they are damaged, they give the sensation of a bowel movement waiting to exit, and it triggers that urge to push something out, but there is nothing there.

Obviously, I have no idea if this is happening to you, but it is something to think about.

I would be very cautious about taking too much Milk of Magnesia. Sometimes the body just gets too used to such things, and it can backfire.

Another idea - and you may already be doing this, is to keep detailed notes of what you are eating at every meal and in-between. See if your symptoms correlate with specific foods.

Exercise might help - I like some gentle yoga postures that help digestion, myself. You don't need to do anything drastic, a good old walk would be great.

Again, you may be doing all of these things.

I do hope you can get this resolved. I know what it is like to become consumed with worry. I topped my Cancer off with a heart attack in February, and while I thought I worried bad enough before, I worry about everything twice as much now.

Tru

nol

Hello, am on my 3rd session of Chemo which my doctors opted for before going to surgery. I had the same problems you had, constipation, pencil thin stools and abdominal pain. That is when i had to have colonoscopy and found a tumor blocking 80% of my intestines. After the 2nd session, my stools came back to normal and a familiar problem presented back itself that i was clogging the toilets regularly with my stool. I take it as a sign of progress. I have 4 doctors collaborating on my condition and i suggest you do so as well.