The Endless Diarrhea and Bowel Issues.......

gabby_ca said:

11 years out for me. Last

11 years out for me. Last year, I started eating a strict keto, low carb diet and all symptoms disappeared in a week. 

I'm glad to see you still check in here from time to time and that you are doing well!

Martha

I'm a year and a half out and it does get better! I had the same stiffness you are talking about. The radiation causes all the tendons, ligaments, etc to shorten and get a bit scarred. So every muscle group thats connected with your pelvis is shorter and less flexible. Don't worry if the providers act like they don't know what you're talking about- it is real! I could barely cross my ankle over my knee to tie my shoe. I went to PT and I learned several stretches that were really helpful even though the PT therapist had never heard anyone with my complaint, she could still give me helpful stretches. I think walking helps too. But it does take time and I'm not back to where I was pre-radiation. The bowel issues continue to be a problem but you do get used to coping with them. I'm going to go on a trip to Italy with a lot of walking and have decided I'm going to take Immodium every day, carry toilet paper with me(and a change of clothes!), explain to the group I'm with a little bit about the problem and hope for the best. And yes, I've already had accidents in public. You just have to keep going and don't let it keep you from doing things. 

Mollymaude said:

Jajmom

I'm a year and a half out and it does get better! I had the same stiffness you are talking about. The radiation causes all the tendons, ligaments, etc to shorten and get a bit scarred. So every muscle group thats connected with your pelvis is shorter and less flexible. Don't worry if the providers act like they don't know what you're talking about- it is real! I could barely cross my ankle over my knee to tie my shoe. I went to PT and I learned several stretches that were really helpful even though the PT therapist had never heard anyone with my complaint, she could still give me helpful stretches. I think walking helps too. But it does take time and I'm not back to where I was pre-radiation. The bowel issues continue to be a problem but you do get used to coping with them. I'm going to go on a trip to Italy with a lot of walking and have decided I'm going to take Immodium every day, carry toilet paper with me(and a change of clothes!), explain to the group I'm with a little bit about the problem and hope for the best. And yes, I've already had accidents in public. You just have to keep going and don't let it keep you from doing things. 

I appreciate you taking the time to address my concerns. I really miss the person I used to be, although I am certainly glad to be here. It's difficult for people to understand, I look the same on the outside and folks don't realize there's still so much going on on the inside. Even my hubby and kids don't quite get it, I feel like my life was turned up-side down and I guess I just expected it to right itself when treaments were over. I AM glad the seemingly endless trips to radiation, bloodwork and dr. visits are over, that is definitely something to smile about! I am trying to take it day by day, looking for little improvements to celebrate. I am grateful for everyone here, letting me and others know that there folks who can understand (unfortunately ) what we are all going through.

Chris,

The Lomotil didn't cause my stool to be firm, just helped to control diarrhea.  I had a period of time after treatment when my stool was firm, but I don't know why.  I can't blame it on anything in particular, but you do want to avoid having hard bm's.  It seriously hurts like the dickens.  Screaming into a towel kind of pain.  And because of the pain, you may try to avoid going and that only makes it worse.  Best advice I can give is to avoid anything that might constipate you.  Peanut butter for instance.

As you heal, it gets easier and less painful.  For me, the pain was entirely internal during those hard bm's.  The external pain came from burns and from diarrhea on tender skin.  Keep using whatever you are using for an ointment externally, and ask for some with lidocaine.  I wasn't offered any and didn't think to ask for it, but I bet it would have helped a lot.

I don't think discussing poo was in any of our conversations prior to diagnosis, suddenly it's all we think or talk about and it's entirely acceptable here.  Seriously, who else can you discuss it with except for people who know exactly what you're talking about?

Hi there, I'm in the UK & have just joined this forum. Reading through all the comments has helped me immensely, as I've been suffering from so many of the symptoms you all mention. I had radiotherapy & chemotherapy together last year, finished the treatment in September 2016, and my scans since then have been clear, for which I'm very, very grateful. However, side effects are lingering, I have to rush to the toilet several times every morning and now my legs are aching and stiff, and I'm so tired. Everyone tells me I look so well, but I don't feel that well and feel like a fraud, everyone expecting me to be back to normal. I don't make plans or go out much as I can't really cope with anything much. This forum has reassured me that what I'm feeling is normal, so thanks! PS I also have a seton in my bottom due to a fistula, which is apparently quite rare! So a double whammy! A pain in the arse literally. X

mp327 said:

Razzi

I'm sorry you have also had to go through this treatment, but am so glad you have found this website.  It's a wonderful place to be for information and support, as you've already learned.  My treatment ended in September 2008 and I will tell you that the first couple of years were a time of coping with lingering side effects and trying to heal.  I'm happy to say that at the 2-year mark, I felt so much better and my bowels had settled down quite a bit.  I had learned what foods were triggers for diarrhea and urgency and I avoided them, which helped tremendously.  I would suggest that you begin keeping a food journal.  Write down everything you eat in a day and note how your bowels reacted.  When you look back, you may see a pattern of certain foods that your bowels do not handle well and you should avoid.  You may find that as time goes on, things continue to improve, so please do not be discouraged.  As for the aching legs, that's another common side effect from the radiation.  I am a believer in exercise, so I think walking may help.  Perhaps you can begin with a walk around the block.  If you have access to a treadmill or perhaps a stationary bicycle, that would be even better.  I presume that you are still going for regular follow-ups with your doctor(s), so make sure you bring these issues up at the time of your next appointment. 

Believe me when I say that things will get better.  It does take time to recover, so be patient.  Try to be as active as possible, eat well, and get enough sleep.  All of that will help with the healing process.  I wish you all the very best!

Hello mp327. Thank you so much for replying, and your helpful advice. I'll start to keep a food journal, and see if I can spot any links. Actually what you mentioned about walking is good advice, I have a dog so I do manage to take her out daily, and I think this has really helped me, mentally as well as physically, I meet so many lovely people while out dog walking. What you said about the 2 year mark is also very encouraging and I do hope and believe that time will improve my symptoms, I only have another year to go.  Also I'm retired so at least I don't have to worry about struggling into work, I feel so sorry for people who still have to work whilst feeling unwell. Best wishes to you! x

jajmom said:

Thanks!

Hi Sally,

I just wanted you to know that you wrote my story down to the tiniest detail! I am 2 months post treatment and am trying to come to terms with this constant bowel issue awarness. I have had too many OOPS! situations myself. I thankfully work about 100 feet from my residence but I still wait for an average of 4-5 bowel movements every morning before I go out to the shop! What's with that? I also am well aware of the restroom locations in every store, restaurant or any place I frequent. There's just no telling my bowel "no" anymore... when it says "yes" get out of my way Anyway, from what you are saying I might as well adjust because this will be my new normal! I may however try the probiotics, any improvemnent over this would be welcome.

Can I ask you if you experienced almost debilitating soreness and stiffness post treatment? I am 53 years old but when I get up from the sofa or out of the car I resemble a 99 year old! Once I get everything moving and loosend up, I am usually good until I sit down again. Other than my bowel issues, this lower back pain and overall body stiffness is my next biggest complaint...along with edema in my legs/feet.

Thanks for sharing, your post made me giggle!

Chris

Hi there, I just joined this forum and was reading through some posts and yours struck me.  I was diagnosed in Nov 16, went through the chemo/radiation in Dec and Jan, so it's been 7 months since treatment ended.  I just recently started having the joint aches and stiffness, just like you describe.  I'm glad to see that it's normal, every little thing worries me!

Jane

Jane s said:

aches and pains

Hi there, I just joined this forum and was reading through some posts and yours struck me.  I was diagnosed in Nov 16, went through the chemo/radiation in Dec and Jan, so it's been 7 months since treatment ended.  I just recently started having the joint aches and stiffness, just like you describe.  I'm glad to see that it's normal, every little thing worries me!

Jane

Hi Jane,

I am glad you have found this site, it has truly been a source of comfort and information...information from those who are dealing with the same issues as you and me.

I know what you mean when you say every little thing causes some concern. I've had my first post treatment anoscopy and the surgeon said things looked good, you'd think that that would alleviate my fears but somehow I believe time will be the only cure for that! Each good check-up will bring more confidence I'm sure. I had some lymph node involvement both mesorectal and extra-mesorectal. This is probably what keeps me on edge the most as I will not have a follow up CT scan until 1 year post treatment. I did not have a PET scan which many of our members have had, my doctors didn't think it was necessary.

Do you find most of you post-chemo/radiation side effects diminishing over time? I have regained a lot of my energy, but as for my BM frequency and bottom fragility, it's seems that healing has slowed down in that department. Also, the achiness seems to be here for the long haul, thankfully a night's rest seems to alleviate most of the lower back pain and hip stiffness.

I wish you well in your recovery!

Chris

I have  been NED for 6 years!!!  Still get diarrhea, presumably from the radiation.  Get a RX for LOMOTIL.  It will stop  the diarrhea.  Good Luck

Razzi said:

Thank you everyone!

Hi there, I'm in the UK & have just joined this forum. Reading through all the comments has helped me immensely, as I've been suffering from so many of the symptoms you all mention. I had radiotherapy & chemotherapy together last year, finished the treatment in September 2016, and my scans since then have been clear, for which I'm very, very grateful. However, side effects are lingering, I have to rush to the toilet several times every morning and now my legs are aching and stiff, and I'm so tired. Everyone tells me I look so well, but I don't feel that well and feel like a fraud, everyone expecting me to be back to normal. I don't make plans or go out much as I can't really cope with anything much. This forum has reassured me that what I'm feeling is normal, so thanks! PS I also have a seton in my bottom due to a fistula, which is apparently quite rare! So a double whammy! A pain in the arse literally. X

You described exactly how I feel and what I'm going through, except for the fistula, I was spared that particular horror.  I think people expect me to feel better, too, and I expect myself to feel better.  It's been 8 months, why am I still tired and achy?  I guess that's just the way it is, it's a nasty treatment with long lasting after-effects.  Thank god I found this site, knowing waht I'm going through is normal is so helpful.

Jane