Please help!

• By hrcamacho
• Reply 3382025
• September 17, 2012 at 8:44 am
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If she tells me one more time I had major surgery, and basically to deal with it, I'm going to fire my surgeon 3 weeks post op, and find another.

• By Chriswife
• Reply 3382066
• September 17, 2012 at 8:57 am
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Hello,

I had the same experience as you. I know yu dont want to hear this, but it IS normal! lol I had barely any pain there and did have discharge. the pain increased and also the discharge and the surgeon looked and said I was healing perfectly, actually better than most. Then the discharge stopped and started again, which was also normal The surgeon said it could go on for months this way. I had surgery 2 months ago and still have some discomfort, again off and on and also decreasing discharge and tehn increasing. I dont know if the dr told you but that area is more difficult to heal. I hope the nurse sees nothing wrong and that you will heal soon:)

Kerri

• By Chriswife
• Reply 3382071
• September 17, 2012 at 8:59 am
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Also, as fa as firing your surgeon, the vast majority of surgeons will not touch someone elses"work". Please keep posting to let us know how you are doing. Another thing I forgot to add earlier is that you could have irritation (i did) and what worked for me is desitin. Ask the nurse about it today to see if it would work for you:)

• By hrcamacho
• Reply 3382081
• September 17, 2012 at 9:02 am
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My concern is the increased pain and increased bleeding. I'm sure with activity it is more difficult to heal, but I had no pain/discomfort the first two weeks, and I did have the normal fecal discharge the first two weeks. This cannot be normal. If it is, and in your situation, how long before you had more good days with the rump than bad?

• By Whzbang
• Reply 3382305
• September 17, 2012 at 10:18 am
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Healing from major surger takes time. Three weeks is just he beginning and so much will continue to change as the weeks progress. When we experience pain and see blood and other "stuff" we are not used to, we get anxious and frightened and need constant reassurance that all is well. Your surgeon has overseen many many patients going through what you are going through, so you must trust him/her. Your body is going to heal in its own time.
I just met with my surgeon on Friday, 2 wks post op. I have lost 14 lbs, cannot eat, was crying through most of the appt as I have depression from the constant pain and exhaustion of having to go to the toilet literally every 1/2 hr throuout the day as the reversal takes hold. Guess what my doctor told me? "THIS IS NORMAL!" and not to be worried, it just takes time and everything is healing just fine. So, we just do the best we can and take good care of ourselves, eat well, get lots of rest. Every week that passes makes a huge difference,

• By Chriswife
• Reply 3382332
• September 17, 2012 at 10:28 am
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I am going to be honest here...I was probably about 6 weeks post op when I starte having more good days...lol Once my surgeon and nurse said it was normal, I just dealt with it and went on about my life. For me thebiggest part was knowing that it was normal rather than the level of pain. I just took tylenol and moved on. Also, lets say a year from now you feel twinges of pain.....that too is normal, it is usually scar tissue. I had hernia surgery and didnt have pain for months. Then one day I had these pulling bouts of pain...called the surgeon and yep, normal..lol
Once you start doing things more you will gradually realize the pain less. I am 9 weeks post op right now and everyting was going really well. Now I am on chemo and sit more because it makes me ill, so I have pain in the backside again. But knowing it is normal, I am okay with it.

• By HappyS (Inactive)
• Reply 3382396
• September 17, 2012 at 10:47 am
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Holly,

After surgery everything is swollen and strangely enough does not start to hurt until things begin to get back to a normal size. Because the healing is mainly inside it takes longer. You say you have increased bleeding and that is, from what I remember, part of the process as, unfortunately is pain which means things are joining up again and healing. Kerri is right in what she says, tough as that is.

We all wish you well Holly but without a reference point (I'm bleeding so bad I'm soaking a pad every half hour or my pain is in the back passage or generally in the left - or right cheek) it's difficult and then we can only say what, if anything, we experienced.

I don't know what you've been doing in terms of exercise or even what you've been sitting on - all factors that can increase pain in your bottom - there is a little known (or understood) condition where the anal muscles go into spasm. I used to get that and have seen many doctors and could never get a satisfactory answer. Most said it was the result of worry and like an anal headache. Anyway, I found sitting in a hot bath was the only way to relieve it. If you have that it's like a shooting pain as if some one had put a stick up you and twisted. AS I no longer have an anus I don't get that any more.

More generally, as I said, pain is not always bad - it often indicates healing. On Sunday we went for a very long walk and I sat on a couple of hard benches - result some bleeding and a pain in the butt. I never expected this to be perfect just perfect enough for me to live a normal life and I do that.

Please take a big deep breath and write down SPECIFICALLY all the things you have observed (blood quantity colour etc) and felt - how long, where, describe it its intensity. Then tell your nurse and the Doctor and if they say it's normal ask them to explain why they say that.

If you are losing a lot of blood or have pain that cannot be relieved by a hot bath or hot compress you need to insist on the doctors investigating thoroughly. Your friends here can only say what the experienced and within the framework of the totally abnormal what was normal for them. Kerri has told you her experience. That's the same for me - it's normal to be going through what you are after such a short time. With me the pain stopped after about six weeks, the bleeding in the sense of soaking pads went on for well over a year because the Chemo delayed the healing.

• By Cookielin
• Reply 3383607
• September 17, 2012 at 5:31 pm
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Perhaps a short dose of better pain killers to get your rump over the hump,so to speak, When you are in terribble pain, you cannot heal properly. It is depressing and feeling like a loss of control. I needed them for the pain that the rectum closing caused,It was excruciating. I did get a week supply of dilauded. (Strong but by the 5th pill it was better already. Maybe ask your doc,

• By Mare5785
• Reply 3384446
• September 17, 2012 at 11:20 pm
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I agree with everyone.. it takes time..

Couldn't help but laugh at your post, Cookielin... lol.. "over the hump" for the rump!!

Pain brings us down.. pain meds are a good options to get through the "normal pain"

• By MarkNelson
• Reply 3384915
• September 18, 2012 at 7:50 am
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I drained for a long time. It's been over a year since my surgery and I'm not necessarily sore but I'm uncomfortable at times. I just keep believing that everything is going to continue to heal and get better.

• By alan41241
• Reply 3385027
• September 18, 2012 at 8:28 am
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I had some pain while in the hospital. It didn't start until three days after the surgery. I realized the delay was due to the epadural (sp) and when the needle or whatever came out the pain started. By the time I went home, eight days after surgery, the pain was gone and has not returned. Had it returned, I would have contacted my surgeon and my ostomy nurse who came to see me twice a week for six weeks.
I'm now six months post-op and doing fine. The depression I felt in the beginning is gone, I have become used to the pouch and see it as a God-send. I'm living my life to the fullest I want to live it. I am free of the toilet, thank God!
Blessings,
Alan

• By Cookielin
• Reply 3386176 · In reply to 3384446 by Mare5785
• September 18, 2012 at 3:35 pm
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I must say, the pain of the rectal/anus removal and closure was excruciating for weeks. Really, like a knife twisting and twisting, up the rump. I HAD to INSIST on better pain meds. I was given percocet to come home with and I was vomiting them up i was in so much pain from the rectal closure. The iliostomy was nothing compared to this. When I finally got the right pain meds it made a huge difference. Even though it was a one week supply it totally changed my attitude. Some Pain is normal but there are meds to help control after surgery pain. I was glad the doc finally HEARD ME! I have said this before but being oN top of pain is the first step to being in control of your body after so much cutting. When finally the pain subsides, the emotional issues of dealing with an ostomy will be the next challenge. There are no drugs for that. Keep reaching out to all of us who Have BEEN there. It is a shitty journey (pun intended). Messy, ugly and sucks. BUT you are alive and your body is ready to re-enter the world with a whole new take on things. I am not a religious person, but sprituality played a huge part in my recovery. There is a reason that you are alive and I am sure someone is counting on you. Unless one has been there with illness and surgery (especially this kind of surgery) it is hard to relate. NO one really gets IT! But we on this site do "GET IT". I hope your pain is lessened by reading all of the stories here. There is life after ostomy. A better life and a far healhier one. Please keep us posted.

• By alan41241
• Reply 3386371
• September 18, 2012 at 4:49 pm
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Isn't that strange. I had almost no pain at all with the same removal. We sure are all different. I'm glad you got your pain medication.
Blessings,
Alan

• By illeocaregiver
• Reply 3387581
• September 19, 2012 at 3:24 am
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I watched and prayed over my husband for months after his colon was removed. His body swelled horribly from the inflammation and sepsis. He was on a ventilator and NG tube for several weeks and a wound vac for months. The radiologists stuck large needles into his body to drain abcesses. He suffered from ICU induced delirium and became toxic on Dilantin. Despite all the trauma to his body and mind, he never complained of pain and never needed pain medication. Its been over a year since the surgery and he remains pain free. Before this last surgery my husband was very sensitive to pain and often needed Vicodin for one thing or the other. He has suffered terribly for many years with a seizure disorder, resulting from an on-the-job brain injury. When we were told that he would lose his colon, i became furious with God for allowing even more suffering to enter his life. Then, almost immediately, the love of God flooded my soul and i surrendered to His will. Since then I have watched in awe..... amazed at how God has shielded him from the pain and suffering that seemed inevitable. Once again He proves that nothing is impossible with the God I serve. I am believing that His merciful healing power will touch all those in need. Expecting miracles in the name of Jesus of Nazareth,
Carey

• By DrTReese
• Reply 3388706
• September 19, 2012 at 12:28 pm
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I'm almost 3yrs out and still remember those early days. I had such bad days/weeks/months before my surgery that afterwards the pain was relatively manageable. I had drainage for about 3 months - but nothing to be surprised about because the surgeon and doctor each told me this is the hardest area to heal... so I expected some hard times. A major point to address - as several people have already - is pain medicine. If your pain is not under control, your body is fighting against the inflammation and there is no "fight" left for healing. Once the pain is under control, your body can now focus on healing. Please do not be afraid to ask for a prescription strength pain medicine, and I bet it won't be a surprise to your doctor that you need it.
I also noticed a post or two mentioning warm water soak - perhaps you could ask the doctor (or WOCN) about a sitz bath. Odds are you've used it before since you had to have your rectum/anus removed. I always used the kind that is like a "hat bowl" on the toilet and hung up what looks like an IV bag of warm water (nothing else). It always seemed to soothe areas in pain and is not risky or invasive.
The last item I wanted to address was your feelings. Hopefully as you've read our posts, you are realizing we have literally felt your pain. Yes, it can be so damn depressing to hear that it is normal. And to top it off when I found out everything I was experiencing was normal - I became extremely anxious. I simply couldn't figure out how I could live like this. My surgery wasn't an emergency, it was after a colonoscopy and it was too diseased to stay in my body - but it was up to me if/when I would have my ileostomy + removal of rectum/anus (I know there is an official name for this, but for some reason I don't worry enough to look it up). I decided very quickly that the time is now and I want it over. Then it was done and I wondered if I made the right decision - pain, drainage, the pouch system, no consistent way to make wafer stick - augh! I was scared out of my mind - and even then, the doctors said "that is normal" - what?! yes, normal. My anxiety was so extreme I thought I needed medication - not for pain - for anxiety! "No" the doctor said - I'm normal.
So first let me say "YaY!" you found us all here for you! Now is the time to reach out to your support system, family, friends, colleagues, neighbors, church members - all the people in different areas of your life. Even if they can't understand what we go through, they can keep us laughing, distract us from the pain, maybe help with dinner, whatever little thing to take your mind off of the pain/frustration. Even if this is just a conversation on the phone. I'm glad you're not isolating... you're a pro-active person and you're reaching out - to your doctor - to us - and seeing WOCN today! Dr. Bernie Siegel (MD) would say you're not a "patient," which implies your submissive, passive and just accept what your told about your healthcare without questioning. Instead he says, you're a RESPONSIBLE PARTICIPANT = A RESPANT! (from his book - Peace, Love, & Healing) I always loved that line - we all need to be respants!!
I can't help myself... one last quote I posted to FB "It is your reaction to adversity - not adversity itself - that determines how your life story will develop! - Dieter F. Uchtdorf
Love and blessing everyone!! terri :)

• By hrcamacho
• Reply 3388821
• September 19, 2012 at 1:07 pm
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I am definitely a RESPANT! And my WOCN takes offense to that. She told me to just sit back, relax, and be a patient for once! Infuriated me! My trip there Monday was excruciating. My pain level was off the charts. BP up (even though in normal ranges). I had stopped smoking while in the hospital, and have gone back to it. I am not allowed to take pain meds, because the antibiotic that I am on is so potent, it can cause serotonin syndrome = death. I'm taking tylenol. Best I can do. I did not have my anus removed. I have a stump. I am still bleeding, and they say it's normal. I'm also on Lovenox post op, and have a week left with that. If it doesn't stop bleeding after I stop the Lovenox, I don't know what I'll do. You guys have been a God send. The outpouring of love from the ppl on this site as well as my church family has been unbelievable. In one way my faith has faltered, in another it has grown. If not for God himself standing in my hospital room and beside me every day since, I would not have made it this far. My emotions are all over the place. This is worse that PPD after my son. I'm coming to terms with my stoma. That's fine. It's everything else that's a pain in butt! Literally! My belly incision doesn't really hurt. I do still have abdominal pain, but nothing that can't be dealt with. It's the pain in the rear that's excruciating. In one way I wish she would have taken it all, and then at least the pain would be tolerable I think. I feel like I have barbed wire in my rear! Constant tearing/moving/healing whatever.

• By alan41241
• Reply 3388903
• September 19, 2012 at 1:29 pm
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I think most of us are RESPANT. I know I am. I'm a take charge kind of guy and I always have questions that I want answered. I never let a doctor off the hook. I continue to press until I get a satisfactory answer to my questions.
If your pain in normal, why doesn't everybody have it? I didn't. And you can't take any kind of pain medication? What are you supposed to do, grin and bear it? That's asking an awful lot from anybody.
And your nurse takes offense if you take charge of your own body? What does she expect, a dumbass?
This has really gotten me riled up. I just can't imagine my sitting there in severe pain while my doctor tells me it's normal and there's nothing he can do or prescribe for it.
I just hope you get some relief soon. God knows you need it.
Blessings,
Alan

• By hrcamacho
• Reply 3388952
• September 19, 2012 at 1:44 pm
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Thanks Alan, you have no idea how riled up I've been. I had actually quit smoking, and since I cant take pain meds have gone back to smoking. Only thing I can do to help with the pain. Hopefully I can kick it again. And I think they want someone to be submissive. I have not now nor ever been submissive. THey truly know how to piss a body off.

• By DrTReese
• Reply 3389082
• September 19, 2012 at 2:29 pm
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Just to follow-up on the pain medicine... the doctor is obviously aware of a significant interaction between the two meds (antibiotic and pain). So my next move is to speak to a Pain Mngt doctor - an anesthesiologist! They are very good at determining different methods of delivery or have different options that your surgeon or doctor wouldn't be aware of. Our physicians get a full semester (4 months - 45 hrs) of education on pharmacology - that is IT. But an anesthesiologist specializes in it! That is all they do - manage pain with meds - under myriad conditions. Keep it in mind if all else fails.
Truly glad you have your faith... my mom's favorite poem was "Footprints" - He was carrying you through the hardest times.
Keep us posted... terri :)
PS - I think we're all a group of RESPANTS! Bernie Seigel's books are great - many of you may remember "Love, Medicine, & Miracles" - he now has "How to Live Between Office Visits" - every book is respant centered!