Concerns post-surgery

Chrisswife

I'm not certain this is the best forum for my question but here goes: My husband has stage 2 rectal cancer and had surgery 3 weeks ago to remove the tumor. Surgery was a technical success in terms of the CA (nodes tested neg) but he is feeling so poorly 3 weeks later that I'm becoming very concerned. He had a permanent colostomy so his incisions are up his tummy, up his backside (anus and rectum were removed) and the stoma site itself. He is miserable with pain in his rear end (aching and sharp), has flu like sympoms, and tremendous difficulty emptying his bladder. He can hardly walk, cannot sit at all, and doesn't sleep well.

The incision up his belly as well as his stoma are healing well and not causing him an unusual amount of discomfort but his backside is in agony. Is this typical recovery that he has to "ride out" or is there something wrong here? He is young and otherwise healthy but now I see him getting more and more depressed by the day (totally unlike him) because there doesn't seem to be an end to his pain. I appreciate any feedback, I've also posted a message on the UOA website but if anyone has other website suggestions, please share.

taraHK

Hi Chrisswife. This is certainly an appropriate forum for your question! I'm a relative newcomer to the forum myself I had very similar surgery to your husband in April for what turned out to be Stage 3 rectal cancer (2 positive lymph nodes). My answer to your question is "yes and no" - yes, I think his reaction may in some ways be 'typical' (if there is such a thing!) but NO, he shouldn't have to ride it out.

Mores specifically, in my own experience and from many others I've heard from, it is the "backside" which is the most painful and takes the longest to recover. If it makes you feel any better, within 6 weeks post-surgery I was feeling pretty good and within 3 months even better. I don't think he should feel miserable with pain - he should speak with his doctors or nurses and get effective pain relief. The same for the "flu like symptoms" and difficulty emptying bladder. I encourage you and your husband to be assertive in dealing with your medical providers in order to get these problems sorted out. Finally, it is normal to feel depressed, with everything he is going through. But sometimes it is useful or necessary to speak with someone professional (counsellor, therapist) and even to discuss antidepressants - to get through a tough patch. Although it sounds like in his case the pain may be the primary issue. Finally finally (!) - please take good care of yourself. Being the primary caregiver is a tremendous load. Your husband is lucky to have such a loving advocate.
Tara

hoosier_kitten

Hi Chrisswife,
I am new to this forum myself, and can only offer prayers and good thoughts at this time...know they are with you and your husband. Tara seems to have great advice. Take care of yourself also. Smiles and hugs.

adina

Dear Chrisswife,
I'm new at this too, on july 22 I had a colectomy to remove a tumor that ended up being stage 1 and unlike your husband I did not have to have a colostomy but had alot of pain post surgery and had really bad cramps, at times I would double over with pain,which felt worst than natural childbirth and then I would throw up. This has happended three times since my surgery . I think I'm having to learn things I can and can't eat, amount of exercise I need, ect. I also had a hard time sleeping for a couple of weeks post surgery my husband said I would twitch in my sleep and I still have to have my pillows under my belly before I can sleep. What I'm trying to say is that it will take time but I do agree with tara in that he should not have to deal with tremendous pain and may need to consult with your doctor , ( I was lucky I had a great surgen and could call him any time and he always called right back) and don't wait till the pain is too bad, I know you probably get scared when you see your husband in such pain. I am feeling much better now, in fact I walked 3 miles this morning(the nurse in the hospital told me the key to recovery was to walk), I am also young ,42, well to me thats young, and I know with your support ,patience and love your husband will be doing fine soon. Hang in there and good news about the nods testing neg. Bless you Both..

Chrisswife

taraHK said:

Hi Chrisswife. This is certainly an appropriate forum for your question! I'm a relative newcomer to the forum myself I had very similar surgery to your husband in April for what turned out to be Stage 3 rectal cancer (2 positive lymph nodes). My answer to your question is "yes and no" - yes, I think his reaction may in some ways be 'typical' (if there is such a thing!) but NO, he shouldn't have to ride it out.

Mores specifically, in my own experience and from many others I've heard from, it is the "backside" which is the most painful and takes the longest to recover. If it makes you feel any better, within 6 weeks post-surgery I was feeling pretty good and within 3 months even better. I don't think he should feel miserable with pain - he should speak with his doctors or nurses and get effective pain relief. The same for the "flu like symptoms" and difficulty emptying bladder. I encourage you and your husband to be assertive in dealing with your medical providers in order to get these problems sorted out. Finally, it is normal to feel depressed, with everything he is going through. But sometimes it is useful or necessary to speak with someone professional (counsellor, therapist) and even to discuss antidepressants - to get through a tough patch. Although it sounds like in his case the pain may be the primary issue. Finally finally (!) - please take good care of yourself. Being the primary caregiver is a tremendous load. Your husband is lucky to have such a loving advocate.
Tara

Thanks Tara. It's comforting to hear from you and others that the backside IS painful and everybody who has gone through it confirms that it is a slow recovery. My husband is the kind of guy who can get through anything as long as he knows what he's up against. Unfortunately we didn't do proper homework prior to surgery so did not know this would be so difficult.

BUT - he is getting stronger and seems to have turned a corner over the weekend. I attribute that to the lift in his spirits in learning that his experience IS typical and it will get better.

Chrisswife

hoosier_kitten said:

Hi Chrisswife,
I am new to this forum myself, and can only offer prayers and good thoughts at this time...know they are with you and your husband. Tara seems to have great advice. Take care of yourself also. Smiles and hugs.

And my prayers are with you as well! I read your earlier post and admire your positive attitude and energy; it makes all the difference!

Chrisswife

adina said:

Dear Chrisswife,
I'm new at this too, on july 22 I had a colectomy to remove a tumor that ended up being stage 1 and unlike your husband I did not have to have a colostomy but had alot of pain post surgery and had really bad cramps, at times I would double over with pain,which felt worst than natural childbirth and then I would throw up. This has happended three times since my surgery . I think I'm having to learn things I can and can't eat, amount of exercise I need, ect. I also had a hard time sleeping for a couple of weeks post surgery my husband said I would twitch in my sleep and I still have to have my pillows under my belly before I can sleep. What I'm trying to say is that it will take time but I do agree with tara in that he should not have to deal with tremendous pain and may need to consult with your doctor , ( I was lucky I had a great surgen and could call him any time and he always called right back) and don't wait till the pain is too bad, I know you probably get scared when you see your husband in such pain. I am feeling much better now, in fact I walked 3 miles this morning(the nurse in the hospital told me the key to recovery was to walk), I am also young ,42, well to me thats young, and I know with your support ,patience and love your husband will be doing fine soon. Hang in there and good news about the nods testing neg. Bless you Both..

Hi adina - Thanks for sharing your story. My husband has had similar pains followed by nausea and occasionally vomiting. You're right - it is very frightening as a caretaker to see someone so ill. He does seem better now - he walked today too but 3 miles?! Wow!

Our surgeon came highly recommended but it has become increasingly clear that his skill is strictly on the table, the communication portion is sorely lacking. I'm glad for you that you have a good available surgeon to answer your questions. I am so grateful for this board and the caring and sharing that goes on here, it has been a blessing. Best wishes ad Godspeed!

EJohn

hi, this is the right place. I had a similar surgery in july. only I also lost my bladder and prostate so I have two bags, also permanent. Also my nodes were negative. he is going to feel poorly for a while, it was a big surgery, but he has to get up and move around. after two and a half months I only have pain when I cough. but I still walk slow and the area where my rectom used to be(now replaced by what they call a flap) is sill a bit tender, but it is getting better. recovery is very slow for that much surgery but it is happening. its a bit depressing at times(thats why I'm here) but I have a good support structure in my family, thats very important. if he needs to talk, I'm willing, may help us both.