Pain internally after proctectomy

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DebR
Posts: 38
Joined: 2006-08-20 17:01:54

Pain internally after proctectomy

Post by DebR »

Our son is 17, and got his permanent ileostomy at age 7. After years of suffering from chronic bouts of disuse colitis, his rectum and anal area were removed in 2007. Over the last 10 days, he has been having pain (he calls it "deep internal pain") in the area where the rectum used to be. He said it feels like something is trying to push out of his body, but there is no opening. It is painful to sit or lie down, and the only relief is to get up and walk around. For the last 3 days, he has also had nausea with this problem. At one time, not long after the proctectomy, he did have some "phantom" pain, but he said what is happening now is nothing like that --it's more painful and it's pretty much constant. The pain goes from mild discomfort to stabbing pain as the day goes by.

His surgeon ordered a CT scan, which showed nothing. But, I am not certain how it could have shown anything -- they had him drink the contrast, but it can't reach to the area of the pain because there is no intestine connecting to that area. They also did a urinalysis to make sure this isn't bladder or kidney related, and the results were negative.

Has anyone had a similar issue? If so, what was the answer?

Thanks in advance for any info!

Deb Randolph
well known stranger
Posts: 77
Joined: 2009-04-09 22:31:38

Re: Pain internally after proctectomy

Post by well known stranger »

Dear DebR

im sorry to hear about your son, iv only just had this removal of rectum/colon 3 weeks ago, so im not much help...just to say i hope all is well and your son is better..let me know how he is, as i see this was posted a while back.Your in my prayers x
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LeeAnn
Posts: 2850
Joined: 2005-10-01 19:58:37

Re: Pain internally after proctectomy

Post by LeeAnn »

Deb,
I would recommend that you suggest to your sons doc to do an MRI or an IV contrast CT scan. There are some, he is not alone, who have pain in that area such as you describe. Though, not constant, when it occurs, it can be very uncomfortable. It feels like an alien is trying to push its way out and bring all the inards with it............... In the mean time, I have some suggestions that may help him:

1. When this occurs, lay on side with pillow between knees and knees curled up a bit (almost full fetal position)
2. Try a heating pad for a bit
3. Try to sit down, though this often feels like a rod is going up through you when you sit straight down, so do so kind of on the left or the right side more than right in the middle.

Mine does it due to scar tissue, but it is not a constant pain. Now, I do have times when it will be/seem constant -- if I have been on my feet too long or doing some lifting I should not be doing.......... :roll:

I wish you and your son well. I do hope that they will run a better test for that area and get some answers.

LeeAnn
You are always right where you need to be to take the next step beyond .GF
brettinaz1986
Posts: 2
Joined: 2010-11-09 21:37:11

Re: Pain internally after proctectomy

Post by brettinaz1986 »

I am a 24 year old male that has had Crohns since the age of 15 and recieved my permanant bag 3 years ago. I am now having the same pain as your son and I do not know what to do. I am confident in knowing every aspect of my disease but I cannot figure this out. If your son wants someone to speak with feel free to email me.

Brett
RoseRed
Posts: 182
Joined: 2008-09-06 11:52:40

Re: Pain internally after proctectomy

Post by RoseRed »

I am comforted to find this thread via search. It's been 12 months since my proctectomy and I still have pain. I had made plans to see my colorectal surgeon but will wait a few more weeks/months as this pain seems to be expected in some cases. Sometimes it feels like a hugh gas bubble just inside the rectum (if I still had one), otherwise it's a burning/aching feeling. I find some relief with warm sitz baths or heating pad use. Hats off to those of you who bike ride, I still favor a pillow for long car rides.
loop iliostomy 2008
permanent colostomy Dec 2009
RoseRed
Posts: 182
Joined: 2008-09-06 11:52:40

Re: Pain internally after proctectomy

Post by RoseRed »

Okay friends, I need reassurance. This pain is not going away. pain-anxiety-pain-anxiety. I want to schedule an appt with my surgeon and request a scan but don't want to seem neurotic. Heat, rest and medication have become the daily norm. Any fellow sufferers care to share your thoughts? Could the proctectomy have damaged some nerves? Both my hubby and gynecologist say, "it looks okay."
loop iliostomy 2008
permanent colostomy Dec 2009
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Aileen
Posts: 2174
Joined: 2005-11-28 14:44:35

Re: Pain internally after proctectomy

Post by Aileen »

RoseRed,

One year is an unreasonably long time to be in such discomfort. We are not doctors so hazarding a guess as to what it is would be irresponsible. Looking from the outside will not tell you what is going on. You need an MRI or a Cat Scan with contrast. Let the Doctor decide on Monday when you call! You need to call either your surgeon or gastroenterologist ASAP. Let them diagnosis it and stop waiting for it to go away after a year!

Sincerely,
Aileen
Crohn's Disease 1983, Colosotomy, 1991, Procto-sigmoid Colectomy, 2008
RoseRed
Posts: 182
Joined: 2008-09-06 11:52:40

Re: Pain internally after proctectomy

Post by RoseRed »

Thanks Aileen.
loop iliostomy 2008
permanent colostomy Dec 2009
RoseRed
Posts: 182
Joined: 2008-09-06 11:52:40

Re: Pain internally after proctectomy

Post by RoseRed »

I saw my colo-rectal surgeon on Friday. He says the pain can be an abcess, a loop of bowel or muscle spasms. I had abdominal/pelvic CT scans today and must wait 24 hrs for results. Thank you again, Aileen, for your concern and insistance that I call for an appt. Sometimes its hard to judge what is expected discomfort and what needs medical attention. :?
loop iliostomy 2008
permanent colostomy Dec 2009
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Aileen
Posts: 2174
Joined: 2005-11-28 14:44:35

Re: Pain internally after proctectomy

Post by Aileen »

RoseRed,

You are most welcome. I too know that feeling of is it me being neurotic or is there really something wrong. I am so happy to hear you contacted your doctor and they are taking this seriously. I hope they resolve it quickly so you can finally be out of pain!

Sincerely,
Aileen
Crohn's Disease 1983, Colosotomy, 1991, Procto-sigmoid Colectomy, 2008
FrDennis
Posts: 1
Joined: 2012-11-10 18:45:24

Re: Pain internally after proctectomy

Post by FrDennis »

RoseRed, what was the result of your CT scan in March of 2011. Has the pain been resolved? I have a similar pain, exactly as you described it, for about two weeks now. I had a bad cold which turned into a bad cough. I suspect the coughing had something to do with the onset of the pain. I saw my doctor Friday and I'm going for a pelvic CT scan on Monday. It made me curious as to how your condition turned out. :)
dziehm
Posts: 5
Joined: 2009-06-21 23:27:26

Re: Pain internally after proctectomy

Post by dziehm »

Hi,

I know this is many years since the first post on this topic. However, I really need some advice. I've had an ileostomy since 2003 with no issues. I finally had a proctectomy this January (2014) and it healed well. My rectal/perineal area was doing ok with some occasional pain where it felt like I had to "go"...just like when I had my rectum. I noticed this happening after I'd gone for a walk or swimming. Both are things that my surgeon said were ok to do.

Over the past 1 1/2 weeks my perineal pain has doubled and nothing helps relieve it. It's a constant pressure and pain, sometimes sharp. Standing or walking don't help, and sitting is even worse. I had stopped taking pain meds, and even now only take one at night every once in a while. A heating pad helps a little but only for a couple of hours. I had a CT with contrast last week which was normal; no fluid in my pelvic or perineal area. I'm seeing my GI doc tomorrow to see if he can help. I'm really at my wits end with this. It's wearing me out. My surgeon wants me to rest and cut back on activity to see if that helps. So far it hasn't and, realistically I can't be laying down/little physical activity all the time. I'm so frustrated because it's 4 months since my surgery and it just seems like it shouldn't be happening, especially as bad as it is.

I returned to work on April 28th, part time; 4 hrs/day at first, now 5 and trying to get to 6 hrs a day by the end of this week. I'm supposed to be full time next Monday, the 19th. I don't know how I'm going to get back to working full time when I barely make it to 5 hours. By the end of my 5 hour day I go home and am in bed the rest of the day. Even that doesn't completely alleviate the pain. I'm reluctant to ask my surgeon to revise my back to work orders so that I have flexibility for the next 2 weeks to work up to 8 hours/day, instead of having to do that. But I feel like that's what I need. Help. I'm not sure what to do to get some relief; what to do so that I can work without being totally distracted with this pain. How on earth have any of you moved forward with normal activities, especially your job.

Thanks,
Dianna
chatkat
Posts: 15
Joined: 2009-07-02 21:40:44

Re: Pain internally after proctectomy

Post by chatkat »

I am having exactly the same problems as posted here. I had a colectomy in January 2009 then in November 2009 they had to do a proctectomy. During that surgery a ureter was accidentally severed and had to be reimplanted the next day. Since that surgery I have had pain off and on in the perianal, pelvic, groin and buttocks. It feels swollen inside (there is a skin tag where I am stitched up) - pain will go away for awhile and come back. This week it came back with a vengeance - pain meds are not touching it very well. The colorectal surgeon says it is likely scar tissue and inflammation. My GI doctor years ago thought maybe there was a smoldering infection . . I have also had cat scans but there is no bowel down in that area so I had the same question as someone else how can they even see if there are fistulas in the buttocks or anything else? Does anyone else have any answers or resolution? Also I have a bulging disk and arthritis in the tailbone . .. so could it be this?

I have Crohns by the way.
tasha35
Posts: 1
Joined: 2014-12-07 05:23:16

Re: Pain internally after proctectomy

Post by tasha35 »

Hi
I've had the same pain issues since having my proctoectomy in January 2014. For the pain I was on morphine patches which help alot and for dressing changes I took a fast release morphine capsules. I was like this for the first 6months or so. As no over the counter/ regular pain relief was working. I had burning, throbbing, sharp stabbing, warm to touch pain in my buttock area. I could not walk, sit, lie down comfortably. And cause I have a fishula opening just below my bum cheek, I have to irrigated as well. In the end my gp referred me to the pain team. I was told it was part of healing process and it's the nerves knitting back together, and this can be very painful. It is a major surgery it will take some people years to recover and sum may always suffer pain. Exercise in moderation, do only what your body allows you to do. There are days when the pain eases and days when pain comes with vengeance. It's restricted me alot going out with friends, drinking and partying, yoga and massage etc....The wound is healing that's what keeps me going, pain is part of the healing process. Recently I've found reiki to be very relaxing for me. It's helping calm me down as the pain makes me tense, stress and very grumpy. My advice go to you gp ask to be referred to a pain team, take the control drug for as long as you get some relief, then start to ease down dosage after a few months. I have had wound infections which can make pain worst. I hope you all can find peace and be pain free.
Crohns/colitis since 18. I'm 38 now. First I ileastomy 18, reversal failed second ileastomy in 2005. Proctoectomy in 2013.
bwolfson
Posts: 1
Joined: 2016-06-28 12:01:07

Re: Pain after pelvic surgery

Post by bwolfson »

I was a successful, practicing general & colorectal surgeon before I developed ulcerative colitis at the age of 40. My colitis did not respond to medical therapy, so I underwent the same procedure I had performed hundreds of times before. My partner, one of the best surgeons I've ever known, performed the surgery. Unfortunately, my ileoanal pouch ruptured and had to be removed. I've had chronic pelvic pain ever since - for almost 20 years now.
I'd seen this happen in one or two patients over the years, but I never thought it would happen to me. I'm sorry to read all of these posts about chronic pelvic pain following proctectomy. As you might imagine, I've been to many good physicians who have done all that they can do, but I still have severe, disabling pelvic pain, every day.
I've tried all sorts of treatments, including many nontraditional therapies. But, like many of you, nothing works very well.
However I've found a few things that help at least a little.
1. Pain Physician: I have a good, open, honest relationship with a skilled pain management physician. Prescribes opiate pain medications and muscle relaxants. These have many drawbacks, as you all know. He helps me take as little as possible, but I wouldn't be able to manage without them.
2. Exercise & Pelvic Stretching : Following a consistent, rigorous exercise routine with pelvic stretching exercises helps me a great deal. It isn't THE answer, but it is an essential part of the answer.
3. Emotional support from friends and family.
4. Stay active: I went back to school to become a professor in another area. Staying active and engaged with other people also helps.
If this could happen to me, it could happen to anyone. Your pain is not "in your head" and you are not alone. If I had the one answer to solve this problem, I would certainly share it with you. My best to all of you!
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