Update to radiation hell

[Polarprincess]

Mitchell, if there was someone around here who did hypnosis i would try it. I would try anything. 2 weeks later i am still in alot of pain. I am taking pain meds but they take 3-4 hours to kick in and then they are only taking the edge off. the skin seems to be getting better, and they told me they are no longer radiating in the anal area, so that should continue to get better, but even though my hemorrhoids are not that large, they continue to be extremely painful despite what i do. I am so sick and tired of being sick and tired, I just don't know what to do anymore. I just want the pain to end so i can have a quality of life again. How can hemorrhoids cause such debilitating pain for so long? I am taking stool softeners, and all i am getting now for stool is pure liquid. It comes on with no warning, is usually in very small amounts, so now i am worried i may be compacted again, because i am not seeing much stool, and maybe this liquid stuff is just leaking by. After going, again i suffer with the burning and excruciating hemorrhoid pain again, and have to sit in the tub for a couple of hours, and then to the couch with a heating pad for a couple more hours. I am not able to tolerate ice. The doctors don't seem to think there is anything medically they can do for me as there is no blood clot, but this is 2008, why should anyone have to suffer like this for so long? I am tempted to admit myself to the hospital and get TPN for awhile so my bowels can rest and heal.
7340 guest, i am not sure why doctor wouldn't recommend radiation for you, did you get a second opinion? Mine was 20 cm from the rectosigmoid junction so wasn't actually even rectal cancer, and they still recommended it for me both locally, and at Mayo. if i knew then what i know know, I may have refused it.

[Lifes2short]

I had a terrible time with rectal radiation and 5FU. I had two months of treatment, it was the most painful part of my entire journey. Make sure you use Miralax every day for the constipation. Drink lots of juices. Senna S is a good laxative and stool softener. You should also ask your doctor for a Reglan prescription, it helps with bowel motility. Your mouth sores and hand and foot symptoms should go away now that they DC'd your chemo. You're constipation will probably improve as well. I am surprised that your docs haven't prescribed more powerful pain relief. When I was doing radiation they had me on Oxycontin. It was the only way I could deal with it. Ibuprofen was also a big help with pain, you might want to try combining ibuprofen with your pain killers. You should not have to be in so much pain. One thing that has been consistent with all my docs is that they are very willing to treat my symptoms. They don't want you to be suffering pain or nausea or constipation. If your docs aren't willing to treat your side effects, you should consider getting a new team. It's a long journey, you need people who treat you like a real person.

Good luck!

[keepnthefaith]

Polarprincess,
Just a thought....
I had terrible, excruciating pain with BMs to the point that I would cry every time I felt the urge to go and then would scream when I did go - sat in the tub for hours a day, took pain meds with no relief, etc. I thought that I had bad hemorrhoids but after a couple of weeks of all of this I went back to my surgeon and he did a very painful exam and found that I had an anal fissure. Treatment was a perianal ointment twice a day and Metamucil to make sure that my stool was well formed and not loose as this irritated the area, I also contined with sitz baths twice a day .... within a few days - no more pain. It takes a long time to heal a fissure and at times it still gets irritated and hurts, but nothing like before.
Might be something you want to have checked just to be sure.
Good luck to you,
Felicia

[Polarprincess]

Thanks for the repsonse. I have 3 different opiates. I have tramadaol, oxycodone, and another i cannot think of name right now, but they are just not working. It is like I am immune to them. I tried taking them exactly on schedule to try and avoid returning pain, and still they barely take the edge off. it is so weird. I am so afraid to take too many as i know they cause constipation which i cannot afford to get worse. I also have been given a bottle of miralax which i was going to start taking today. My doctor said it is like taking a little dose of golyteley every day, but i am afraid of what the results might be as i am already so liquid as i mentioned. how long after radiation was done did your symptoms/pain finally abate? I have 10 days left. My hand and foot blisters did go away with the D/C of the chemo, as did nosebleeds that i was having daily. I did get numb fingers yesterday which i found odd since i haven't had any Oxy for quite some time now. That has gone away as well though.

[Lifes2short]

I hate to be the bearer of bad news, but the symptoms got worse for about a week after finishing radiation. But once I started to heal, I healed quickly. I was out of pain within a couple weeks and even able to ski about three weeks after completing radiation. I have the same problems with opiates, they don't do much for me. I'm sure the Oxycontin helped some, but it has never had much effect on me (I don't understand all the hype and abuse). The best thing I have found is dilauded. You might want to try that. But as you said, they all make the constipation worse. Don't forget good ol' ibuprophen. Docs don't seem to think of prescribing it and it can be rough on your guts if you take it for long periods of time. But for me it's a life saver.

I don't have any real words of wisdom other than "hang in there". Radiation is nasty stuff. Good luck!

[Lee]

I am sorry you are going thru this, as I stated earlier, radiation to me was the worst (worse than chemo), but please remember, for as much as you are suffering, you are KILLING those cancer cells. Radiation was very SUCCESSFUL for me, and in hind sight, WORTH ALL the PAIN and MISERY that I suffered thru. Remember you get relief at some point when your have finished radiation.

This is was what got me thru, I did not eat until I knew I was home for the daily, eating make me tied to the toilet and yes it hurt to poop (those hemorrid are he**), and all that came out was liquid. Honestly, I preferred the liquid verse a regular stool. I did not take anything to bulk me up, because it was less painful (liquid stool) and I had a routine when I did eat.

Once I ate, I had one hr, then I would spend 3-4 hrs tied to the toilet, going as often as every 5-15 minutes. I used Oatmeal baths (8-10 daily) to help control the itching and pain. Sometimes I went from tub to toilet, back to tub again. We have a bathroom in our master bedroom and my husband stopped using it when I was on radiation, he used the guest bathroom instead so that I had complete use of the bathroom.

One morning I woke up to an urge, I did not make it to the bathroom in time, we are talking mere seconds here. I thought I was finished, took a shower to clean myself off. Again I got hit with an urge, I did not make it out of the shower (less than 2 seconds). Went to the guest bathroom and again did not make it. So in the course of 15 minutes I lost control in 2 bathrooms and a shower.

Weeks later, when I saw my Dr, I learned that 2/3 of my rectal muscles were destroyed as a result of radiation, I knew then why I had no rectal control. When I finally met the ostomy nurse, both my husband and I felt an ostomy bag was the only way to get my life back. Today I do have my life back, and you will to one day again.

As bad as it is, you give that tumor HE**. You make sure it DIES, DIES, DIES, that that it it WILL NEVER return again. If you want to talk, I will give you my number. You will get thru this.

Lee

[Polarprincess]

my doctor did mention there could be an anal fissure but i was in too much pain for him to check. I do have an ointment i use inside, hopefully if there is a fissure, that is helping it. hearing about losing 2/3 of your rectal muscles from radiation freaks me out, as i have had some loss of control issues myself recently. The worse thing about all of this for me is that it was just a stupid polyp i had- all the cancer was removed by a polypectomy before i even had the LAR. This is all adjuvant. we don't even know if i need it. There is no tumor to shrink or anything like that. but if this prvents it ever coming back again by 95% like my doctor says, i guess it will be worth it in the long run, but it sure is hell right now.

[Lee]

Hi polar,

I had a hugh tumor just outside my colon (8 X 11 cm) and at least 4 nodes were affected (surgery would confirm 6 nodes affected). Because of my age, they showed me no mercy. The good news, I'm coming up on my 5 yr anniversary in about 6 mths, and per my Onc, I'm doing beautiful. This is better than what they expected when I was first diagnosed.

I suspect with you they are aggressivly killing the nodes. If you only have SOME loss in control, I bet you get most of it back after radiation, I got some back also. It was just prior to my surgery, I learned 2/3 of my muscles were gone, that is what was not coming back.

One day at a time. Try the oatmeal baths if you have not yet, it was my saving grace.

Lee