Desperate

[Richard42]

Hi all,

My GP detected I had colon cancer in March this year - intense rectal bleeding over half a day lost more than half by blood (the RBC count was down to 5 or so).

Into A&E where they did battery of tests and ended up removing a chunk of large intestine, small intestine and my appendix.

Gave me a temporary iliostomy.

Recovered from that op well, although getting pain in small intestines frequently, that doctor prodded me a bit and declared it fine (done this 2 or 3 times now).

I have stage 4 cancer, colon, lymph nodes and liver. Liver has 2 masses, a small < 1cm one and a larger 3.6cm one.

They wanted to treat me with chemo for 2 to 3 months to see if the liver tumors would shrink, and ensure no other lumps appeared. Started chemo, 1st session OK, 2nd session OK but bad hands and feet syndrome and bit of nausea. 3rd session the day after I received I just couldn't eat anything or drink much.

Had to go back into A&E where they gave me 8lt of saline drip. Could not eat anything at all - really bad nausea, vomiting.

After the fluids I was feeling a lot better, somehow managed to eat a normal meal. Went home, slept for 8 hours and then vomited the meal right back up - it didn't seem to be digested?

Now, 4 days later, no thirst, no appetite, anything I eat comes back up unless I eat such a small portion I may as well not bother.

Ah, just vomited up the Ensure drink I had an hour ago. Again, no bile, just comes up the same as it went down.

My iliostomy is on my right hand side upper tummy. The pain is in a horizontal like from the stoma to my left hand side.

The pain is usually followed by some stoma discharge.

Oh, sometimes if I feel nauseous but do not have the pain, if I can burp a lot, the nausea goes away.

Right now every time I get up I have to hold onto something as get extrmely dizzy.

I can't walk more than 10 feet without starting to feel dizzy again and need to rest. Sitting up is not resting, I need to lie on a bed / recliner (assume blood pressure is that low, lying down is the only way I can start to feel not so bad.

The output from my stoma is 99.9% liquid, upto 6lt a day. Urination has dropped off to once every 2 days.

I have found out that at the moment fruit is good!

Oh, and my taste has completely changed - water tastes like the water after you have washed up the dishes in it.


Right now I genuinely feel like I'm dying - will power, strength - I've never been this weak, mentally or physically.

If I go into hospital they hydrate me and I go home and cause my intestines are messed up, get right back to where I am now.

[lolapergola]

Richard ,I didn't have my stoma for cancer but I think there is a separate thread on it if you search . There are a lot of people on this board who have tons of experience so you have come to the right place for support .Will pray for you at this very difficult time and hope you will keep us updated ,when you are up to it ,
best wishes
Lola .x
ps do you have a Macmillan Nurse or any other support ?

[Richard42]

Currently in ICU as my kidney function failed.

The values are now heading back to correct, and when they are they will move me to a normal room where they will start to look at what the real problem is.

[lolapergola]

Thanks for the update .I hope you get a normal room soon .
take care
Lola .

[Richard42]

Hi Lola,

Thank you very much for you comments and concern.

I am in a normal room now.

Talked to one of the doctors (Oncologist) who has said we will wait for everything to clear up (I guess 4 to 6 weeks) and then likely to do the operation to remove tumours from my liver.

Another meeting with the stoma doctor tomorrow (I hope) to see if he will agree to remove the "temporary" stoma during the same operation, which will make me a very, very, very happy man! I can't see any reason not to, one operation is safer than two, less anasthetic risk, lower infection risk...

And once that is over I will be on a different chemo regime, but starting off on a single drug (usually 3 or 4) at a very low dosage, and slowly bring it up so we know I can tolerate it.

Even my oncologist said he has never, ever seen a reaction as bad as I had, and said I was close to death (body just shutting down) which, whilst I suspected was the case, (you get a feeling) still shook me.

Anyway, when they have checked that there is nothing up with the stoma (I'm STILL certain there is a problem causing these shooting pains) or worked out what it is and sent me home I feel I will be in a lot better place.

[lolapergola]

Hi Richard , I bet you'll be a lot happier without the stoma . At least you're in a normal room now , but as you say - there is no place like home .It does make sense for them to do them both at the same time ,let's hope it works out that way .
God Bless,
Lola

[To Dream a Dream]

Dear Richard: Please know you have my prayers as well. Being as desperately ill as you have been recently will leave you drained of all strength. May you continue to have the help you need from compassionate health care professionals. Electrolyte imbalance & dehydration alone will undermine your efforts to do anything on your own. Hopefully, the IV therapy is renewing your body, mind & spirit & you will be back on track soon.
PS Will send a PM

[To Dream a Dream]

Richard: Just a postscript to the above. Please be advised that people with ileostomies are particularly sensitive to temperature extremes. If you are in one of the current hot zones in the USA, please take all necessary precautions.

[steiconi]

I hope you're doing better.
If you are regurgitating undigested food, your problem probably isn't with the stoma itself, but earlier in your digestive system. Maybe a blockage.

[gembally]

I am new to this forum, and just came across your post. Ileostomys can be very sensitive..... basically they can be very temperamental. I've had mine for almost 5yrs and its not been fun either, so I feel your pain in that respect.
Dehydration from heat and/or vomiting can cause you to spiral in to further dehydration very quickly.
It sounds like you have both, due to the treatments you are having. If/when you are receiving IV fluids in hospital, they should be giving you hartmans solution this, althoughit doesn't seem much, really does help alot. If you are at home Dioralyte is good (although disgusting) to keep all your levels in check. Just try to take small sips throughout the day if you are feeling sick. I also drink lucozade when I'm not able to eat, as well as meal replacement drinks if I'm able to tolerate.
Have they given you Ondansetron melts to help? I think its zofran in the US?
2-3ltrs of fluids are recommended as the daily intake for ileostomy patients to stay hydrated. I still can't manage that myself after almost 5yrs, even with all my anti sickness meds.
Hoping you are able to be home soon.

[lolapergola]

Hi Richard , how is it going ? are you home yet ? how are you feeling ?
Lola.

[cbyrnes_esq]

Richard, I am so sorry. I too had cancer, but since I didn't have a colon, it appeared in my rectum/anus. I had to have the j-pouch which had served me so well removed, and I have a Kock pouch now.

One reason you're feeling dizzy all the time is the amount of output that you have. You can't poop out 6 L of liquid and not get dehydrated. You couldn't drink enough liquid to replenish it if you tried.

I have the same problem, though not as extreme. The solution my doctor gave is imodium and diphenox, both of which slow the intestines down and allow you absorb the water and nutrients better.

Richard, I am now 1 1/2 years cancer-free, thank God, and God willing, you will be too. I know what you're going through, because I went through it too, and it's horrible. But you will make it and have a good life on the other side of all of this. Hang in there.

[lolapergola]

Richard , if you are up to it , please check in and let us know how you are doing x