side effects getting worse

Barb5454

Hi..I'm one year post treatment and so far I'm cancer free. But I'm still having side effects from the radiation but they seem to get worse, which scares me. So I'm reaching out and asking if anyone else has gone through this. Before I list the side effects I do want to say, I am so thankful and blessed that I have been cancer free for one year, but I still live in this fear it's going to come back.

When going through treatment I didn't have the diarrhea but I had the constipation and it was very painful when I went to the bathroom. I still have some bleeding but what is getting worse is the narrowing of the stools and the feeling of not feeling finished after I go.  Or if I have fresh veggie I bleed a lot.  And I feel bloated a lot

 

And I still have trouble having sex. It feels like there is some kind of wall there. If that made sense.

 

your input is greatly appreciated

eihtak

Barb5454

Congratulations on that rollercoaster first year!! Unfortunately, the ride often continues but with a few less drops I think! I have an ostomy so can not relate to the narrowing of stools and feeling not empty, but it seems that would or could be related to the stenosis caused from scar tissue after radiation. Have you had a follow-up anascope? As far as difficulty with sex, that is also common due to stenosis. Have you used dilators? It is not too late to begin if not, or to continue. I am 3 years post and although I have short periods where I slack off, I try to still use almost daily when I shower. If not for helping along the lines of sex it is wise to make future pelvic exams more comfortable.

I was told that that scar tissue can continue to build and sort of transform itself for many months after radiation, so may be just that, but please make an appointment if these issues do not resolve. Keep us posted with what I hope is continued good news.

I will have you in my thoughts and prayers.

Katheryn

Phoebesnow

eihtak said:

Barb5454

Congratulations on that rollercoaster first year!! Unfortunately, the ride often continues but with a few less drops I think! I have an ostomy so can not relate to the narrowing of stools and feeling not empty, but it seems that would or could be related to the stenosis caused from scar tissue after radiation. Have you had a follow-up anascope? As far as difficulty with sex, that is also common due to stenosis. Have you used dilators? It is not too late to begin if not, or to continue. I am 3 years post and although I have short periods where I slack off, I try to still use almost daily when I shower. If not for helping along the lines of sex it is wise to make future pelvic exams more comfortable.

I was told that that scar tissue can continue to build and sort of transform itself for many months after radiation, so may be just that, but please make an appointment if these issues do not resolve. Keep us posted with what I hope is continued good news.

I will have you in my thoughts and prayers.

Katheryn

Hi Barb

I am 3 years post tx.  I am cancer free.

 

I am still on this roller coaster.  From 11/1/12 to 11/1/13 I bled every day.  This is after being pretty normal for the first year.  Now there is some improvement.  Less blood, less pain daily.  It is still very difficult to passstools, like having a baby and all I will get is a little piece.  I drink a lot of water, eat no grains, live off homemade blended juices and soups this seems to help with the movement and the softening of the stools.  I am finally off the stool softness for the past two weeks since I started reducing my solid foods.  But still there is blood from frequent softer stools. 

 

I know it is difficult and worrisome, keep telling your doctor but also try to accept your new normal. Mdefinetly keep playing with your diet.

 

At three years out I am finally feeling like my old self but still have these issues.

 

I wonder if they have anal dialators.  Thins always seem to move smoothly after I do the prep and have the exam and I wonder Why?

i hope this helps knowing that others are also suffering thru these issues.

 

Sex improved after a year and at 3 years is pretty normal.  

 

I am sorry for the typos buyet this system does not work on a I pad!

Barb5454

Phoebesnow said:

Hi Barb

I am 3 years post tx.  I am cancer free.

 

I am still on this roller coaster.  From 11/1/12 to 11/1/13 I bled every day.  This is after being pretty normal for the first year.  Now there is some improvement.  Less blood, less pain daily.  It is still very difficult to passstools, like having a baby and all I will get is a little piece.  I drink a lot of water, eat no grains, live off homemade blended juices and soups this seems to help with the movement and the softening of the stools.  I am finally off the stool softness for the past two weeks since I started reducing my solid foods.  But still there is blood from frequent softer stools. 

 

I know it is difficult and worrisome, keep telling your doctor but also try to accept your new normal. Mdefinetly keep playing with your diet.

 

At three years out I am finally feeling like my old self but still have these issues.

 

I wonder if they have anal dialators.  Thins always seem to move smoothly after I do the prep and have the exam and I wonder Why?

i hope this helps knowing that others are also suffering thru these issues.

 

Sex improved after a year and at 3 years is pretty normal.  

 

I am sorry for the typos buyet this system does not work on a I pad!

Thank you!

Thank you both of your input. It actually made me feel better. I see my general onc this wednesday and I'll probably have a cat scan and anascope done in Feb. You know, they don't tell you want can happen after treatment. thank goodness for this site

Marynb

Hi Barb
I am sorry you are having difficulty. I am guessing if you were constipated during treatment, you were probably taking pain pills, which can cause the constipation. As far as the painful stools, others have suggested stooll softeners. For me, staying well hydrated is key. Make sure you are drinking plenty of water. I hope all goes well at the doctors this week! Stay well.

mp327

Hi Barb--

I can understand your frustrations, but I don't think what you are experiencing is anything out of the norm post-treatment.  Still, if you are concerned about these issues, I would recommend putting in a call to your doctor.  Regarding the thin stools, you may have some stenosis or scar tissue.  The bleeding can result from this or it could also be from proctitis, which is when the blood vessels are nearer to the surface of the intestinal lining.  As stool passes by, bleeding can easily occur.  It's particularly bad when the stools are hard or if we're constipated.  If it gives you any comfort to know this, I could not eat fresh fruits and veggies in the raw form for a long, long time after treatment.  I could eat them cooked with little problems, but raw ones just tore me up.  I found ways to cook apples, pears and peaches in a pyrex cup in the microwave with a little cinammon and tolerated those quite well. 

You should probably ask your doctor what stool softeners and/or laxatives he/she recommends.  Also, if you are not taking a probiotic, that could help.  Drink plenty of water, as this helps keep the intestines flushed out.

I hope you won't give up, as it took me about 2 years to feel like I was finally back to normal.  I learned what foods to avoid and what things kept my intestines from getting grumpy!  Take care. 

Barb5454

mp327 said:

Hi Barb--

I can understand your frustrations, but I don't think what you are experiencing is anything out of the norm post-treatment.  Still, if you are concerned about these issues, I would recommend putting in a call to your doctor.  Regarding the thin stools, you may have some stenosis or scar tissue.  The bleeding can result from this or it could also be from proctitis, which is when the blood vessels are nearer to the surface of the intestinal lining.  As stool passes by, bleeding can easily occur.  It's particularly bad when the stools are hard or if we're constipated.  If it gives you any comfort to know this, I could not eat fresh fruits and veggies in the raw form for a long, long time after treatment.  I could eat them cooked with little problems, but raw ones just tore me up.  I found ways to cook apples, pears and peaches in a pyrex cup in the microwave with a little cinammon and tolerated those quite well. 

You should probably ask your doctor what stool softeners and/or laxatives he/she recommends.  Also, if you are not taking a probiotic, that could help.  Drink plenty of water, as this helps keep the intestines flushed out.

I hope you won't give up, as it took me about 2 years to feel like I was finally back to normal.  I learned what foods to avoid and what things kept my intestines from getting grumpy!  Take care. 

Mp327 and Mary

Thank you...I'm feeling a little better. I see my onc next week. I'm cooking my foods like fruits etc and that is helping. In fact my stools are normal size now (sorry for the graphic picture). My system is so sensitive. I'm trying a vegan diet because I now have acid reflux due to the chemo and my insurance doesn't take care of any acid reflux medicine. So I eat light and small meals which is also helping.

Mary yes I was on a lot of pain meds and just recently got off of them. It all gets confusing because the symptoms I'm having are the ones that told me I had cancer...now it's side effects to treatment. It blows my mind sometimes

Marynb

Barb5454 said:

Mp327 and Mary

Thank you...I'm feeling a little better. I see my onc next week. I'm cooking my foods like fruits etc and that is helping. In fact my stools are normal size now (sorry for the graphic picture). My system is so sensitive. I'm trying a vegan diet because I now have acid reflux due to the chemo and my insurance doesn't take care of any acid reflux medicine. So I eat light and small meals which is also helping.

Mary yes I was on a lot of pain meds and just recently got off of them. It all gets confusing because the symptoms I'm having are the ones that told me I had cancer...now it's side effects to treatment. It blows my mind sometimes

Barb
Healing from this treatment is not a straight progression. I am glad that you are feeling a little better! Stay hydrated and good luck with the doctor!

sandysp

Marynb said:

Barb
Healing from this treatment is not a straight progression. I am glad that you are feeling a little better! Stay hydrated and good luck with the doctor!

You are so right, Mary

Mary is right. Progress is not a straight line. Changes in stool sizes, pain, gas, diarreah, constipation, bleeding. I think I've got the problem handled and then I sometimes feel right back where I came from but it is so not true! I am having a lot more good days than bad going into my third year post treatment. It's also quite true that I was sick for a long time before I ever had any cancer treatments with irritable bowel and diverticulitis. There are a lot of different foods or food combinations (something we don't always think about the combination factor) that can upset the delicate gastric juice balance. 

Staying hydrated is so true also. I stopped all alcohol consumption and only drink decaffenated beverages. I drink a liter of coconut water a day now and take Bikram (a hot form) Yoga. Exercise is mostly important to my fragile good mood and the Lymphedema I suffer as a result of the cancer being in my lymph glands and the strong radiation used to kill it and other factors that happened even before the cancer. (Primary and secondary lymphedema).

I am still a big believer (ad nauseum I am sure on this board) that the organic whole husk psyllium fiber is the way to go when it comes to bowel control. This was recommended by my physician at MSKCC. It has helped me have a much better track record regarding leakage.

Hope this was helpful.

Sandy