Please Help With Weight Loss/Endless Painful Constipation

[Gravelyguy]

Oh I am so sorry you are going through this.

Am I correct and you haven't had surgery yet?

Post surgery, I think almost all of us rectal cancer people have issues. But if this is without surgery I would be seeking help too! My only suggestion would be to make sure you are taking a good probiotic and at a larger dose than the minimum. You had antibiotics and chemo so your bowl flora is probably pretty out of sync. I don't think this will be a cure all but sure could help. Also lots of water so that it isn't as sticky coming out. I know when I haven't had enough water everything just sort of sticks there.

So sorry you are going through this,

DAVe

[utahgal7]

Hi,

I am so sorry you are having to go through this. Constipation is rough! Have you talked to your doctor? You had mentioned that you are using a fentanyl patch. Do you think maybe this medication is contributing to your constipation? I think probiotics are helpful. However, probiotics did not help me. The only combination that worked for my constipation (and I am not personally recommending this combination) was Miralax, senna, extra fiber and a couple of tablespoons of olive oil daily. What I have learned is that constipation affects everyone differently and what works for one person may not work for another.

Good luck...Call your doctor ASAP and explain your misery!

Sending you hugs...I hope your situation improves.

[utahgal7]

prayingforccr,

Same thing happened to me. You have to keep calling your doctor about it. The old adage, "squeaky wheel gets the grease" fits this situation. Also, I found this website helpful: https://www.mdanderson.org/content/dam/ ... oblems.pdf

Keep calling your doctor! When I was having problems with constipation, I think my oncologist and surgeon's nurses were getting tired of hearing from me. So after several phone calls, they developed a constipation strategy for me.

[Lee]

I have been STUNNED at the lack of response Ive received regarding this issue from “experts”.



I have gone to a nurse at my oncologist with tears in my eyes begging for help. Basically l, her response was “not my job”. My oncologist said basically the same thing “ Talk to pain management and a GI”.



Again, I’m down to 150 from 225 in 8 months and no one has said anything/intervened/helped me with this.

When you say you have talked to the oncologist and the nurse about your pain, are these people at MSK or at some other location? Do you have a lead doctor at MSK?

Lee

[beach sunrise]

Goodness! That is terrible.
Find a really good GI doctor. Onc's aren't really the go to person for what you are experiencing I wouldn't think.
I hope you get some answers and relief very soon.

[Lee]

Do your Dr.(s) at MSK know what you are going thru at this time? Is there any doctors who are concerned about you losing so much weight? The fact that you are afraid to eat. Or your current bathroom issues? Again do you have some type of lead Dr. at MSK? Who is calling the shots for your care. MSK or local folks?

If MSK is not aware of your current situation, you really need to let them know, especially considering you are in an experimental trial with them. If they do know, what are they saying??

When I was on chemo, FOLFOX was an experimental drug. Had not been approved by the FDA yet. I too was in an "experimental trial". I had to keep my Onc "current" on any/all issues I was having. When I started to lose some weight, I got the lecture from my Onc. Towards the end of treatment, I started to lose hearing, my Onc got me a "doctor to doctor" referral with an ear surgeon. Normally that first visit would take 3-4 weeks to see this surgeon. My Onc got me in in 48 hrs.

Who recommended the Yakima Fruit Paste? Unless it came from a doctor, hold off until that GI visit. When I was on chemo, I could NOT take anything without checking with my Onc first. This included over the counter vitamins.

Good luck,

Lee

P.S. Edited to add FOLFOX was deemed an experimental chemo, FDA had approved it for stage IV folks ONLY. They were still learning the side effects and effectiveness. I was getting it as a stage III.

[Lee]

I will be honest, I'm not sure what to say.

MSK is usually more on top with people having side effects. I believe they have a team of experts that help people deal with cancer and ALL THE ISSUES associated with it. Like nutritionist, counselors, etc. They attack the cancer from many different directions. They are a #1 hospital in this nation for a very good reason.

You remind me of someone else we have not heard from of for awhile. The old timers know who I am talking about. . .

I hope you find your answers,

Lee

[FightCRC]

I am so sorry you're going through this. But I'll also say that there's no way a bag is worse than this. I know you're anti-bag to the point where you'd rather commit suicide, but I can assure you your QOL will be vastly improved by a bag. Hope you will reconsider.

[boxhill]

I find it frankly unbelievable that no one has addressed this with you if you have described the situation as you have here, especially given your weight loss. Have they by any chance made suggestions that you are unwilling to accept?

Have you considered a daily morning enema? Some people have found relief from uncontrolled poop using this.

I'm very sorry that you are suffering in this way.

[NHMike]

I have been STUNNED at the lack of response Ive received regarding this issue from “experts”.

They don’t seem to care.

I have gone to a nurse at my oncologist with tears in my eyes begging for help. Basically l, her response was “not my job”. My oncologist said basically the same thing “ Talk to pain management and a GI”.

“Take a couple of stool softeners”

Again, I’m down to 150 from 225 in 8 months and no one has said anything/intervened/helped me with this.

I had this same response from my radiation center. I asked about laxatives and they suggested low-power laxatives - I wanted to use Mag Citrate and they suggested milder stuff. They did offer CBD and painkillers. I think that it's just different with health professionals that have never felt what it's like going through it.

[DarknessEmbraced]

I'm so very sorry you're going through so much!*hugs* I hope you will be able to find a doctor who can help.*hugs*

[Jolene]

Oh dear, this sounds terrible.

I am shocked that MSK hasn't stepped up at all given how well known they are for their bowel cancer studies? How about writing something official to their medical board directors direclty and bringing it to their attention if your healthcare team couldn't be bothered ? Could it be an internal management issue ?

I would even consider highlighting the situation to official medical boards if you feel they are being negligent.

MSK's center is often quoted as the gold standard of rectal cancer management from my part of the world. I'm really shocked to hear of such news.

I hope you find some solutions soon.

[Lee]

Oh dear, this sounds terrible.

I am shocked that MSK hasn't stepped up at all given how well known they are for their bowel cancer studies? How about writing something official to their medical board directors direclty and bringing it to their attention if your healthcare team couldn't be bothered ? Could it be an internal management issue ?

I would even consider highlighting the situation to official medical boards if you feel they are being negligent.

MSK's center is often quoted as the gold standard of rectal cancer management from my part of the world. I'm really shocked to hear of such news.

I hope you find some solutions soon.

I truly believe there is more to this story than what we are getting. Ever hear that old saying "there are 2 sides to every story"! For someone who wants help, when I asked several specific questions, I got vague repeat answers as a response. You can't really help someone who want to be that way. Their opening thread did a lot of complaining about their current QOL issues, & to some extend, the medical professionals; butt when you try to get to the bottom of what is going on, this person does NOT want to talk about it.

Just my humble opinion,

Lee

P.S. Edited to add, this person has made it clear in other threads s/he would commit suicide vs getting a colostomy bag. When I asked why, what is so bad about a colostomy bag, no response. I thought my QOL issues were bad, thus my bag today. This person has me beat on poorer QOL issues. I don't regret my bag, gave me my life back & I was able to be a normal mom to my 2 kids & I got to see them grow up. Best decision I ever made. I am very open about my bag & most friends/people tell me if I had not told them, they never would have know I have a colostomy bag.

[Jolene]

I truly believe there is more to this story than what we are getting. Ever hear that old saying "there are 2 sides to every story"! For someone who wants help, when I asked several specific questions, I got vague repeat answers as a response. You can't really help someone who want to be that way. Their opening thread did a lot of complaining about their current QOL issues, & to some extend, the medical professionals; butt when you try to get to the bottom of what is going on, this person does NOT want to talk about it.

Just my humble opinion,

Lee

P.S. Edited to add, this person has made it clear in other threads s/he would commit suicide vs getting a colostomy bag. When I asked why, what is so bad about a colostomy bag, no response. I thought my QOL issues were bad, thus my bag today. This person has me beat on poorer QOL issues. I don't regret my bag, gave me my life back & I was able to be a normal mom to my 2 kids & I got to see them grow up. Best decision I ever made. I am very open about my bag & most friends/people tell me if I had not told them, they never would have know I have a colostomy bag.

I'm sure there is another side to the story. I guess we all come to terms with our diagnosis in different ways and at a different pace with different life circumstances. Perhaps he/she simply needs some more time to go through the motions.

When I was first diagnosed with the possibilities of a temp bag, LARs and perhaps even a permanent bag, I went into a downward depression spiral. It was the darkest moments of my life and mind you, this was still in the process of me being a potential WW when I should be somewhat "happier" than most so to speak.

I visited this board countless times and came across posts by parents being grateful for the surgery and the bag. Some of them even gave up the WW option and opted for surgery anyway as it was far more important to make sure that damn tumour is removed entirely so that they get a better chance at watching their kids grow up than risking it all for a WW recurrence. The bag was mostly insignificant for them. Unfortunately, it didn't resonate with me at all because I have no children. Being on the WW list thus became my obsession.

I can appreciate how the love for one's own children may have helped parents conquer even the greatest fear and uncertainties and that's really awesome and heartwarming. I'm married but at that time it felt like even having a spouse was not enough of a reason for me to want to live on if I were to have a bag or suffer from LARs. I was fortunate enough to have access to a good counsellor and she made things a tiny bit better (only after confirmation of me going on WW).

If I have to go through the idea of LAR and bag situation all over again, I'm sure I won't be taking it well. Perhaps as someone without kids, nothing will ever reassure me that the bag is okay unitl I actually have the bag ? But I hope the day never comes and I know I will not be okay if it did.

[Jolene]

Duplicate - pls igore.