Ok, so if anyone out there has followed my posts at all. In short, I had diverticulitis and had 6 inches removed in 08/11 and ended up with peritonitis 3 days later, back in the ER and emergency surgery, and got a colostomy (temporary) LOL. Went in for reversal on 12/27/11 and 3 days later back in the hospital for ER surgery for another perforation. Colon too thin to reattach, so now it's permanent. So I went through 4 surgeries in less than 5 months and have a ruptured inguinal hernia. And it hurts like hell off and on, and after these last 2 surgeries every couple of days or here and there, there seems to be no rhyme or reason, I get really bad pain around my incision site. Surgeon says no hernia there, only the one, and to use menthol spray for the pain. Now, I have tried it and it works for the skin, but does nothing for the deep-down pain, and on those days I end up taking so much ibuprofen or Tylenol that it gives me stomach cramps. The surgeon says that I am young and resilient and not like her other patients, and should basically be able to deal with it and move on. I don't know if it is scar tissue or what, but I know I get up every morning and at least 3-5 out of 7 I can hardly stand straight or take a full breath. I did get a CT scan and they said nothing other than the hernia, and they can't really tell about any scar tissue. But I am getting blown off by my surgeon and my primary doctor tries to send me back to the surgeon. No help. Has anyone else dealt with this same issue? I think that the only thing it could be is the fact I am younger and shave my head and have mass tattoos, that they just blow me off. Any advice or ideas anyone??
StomaStan,
Wow, so sorry to hear that you couldn't get a successful reversal. I just ran across your posts today. I am new here and have just been looking around for any info I can gather. I have a permanent ostomy (since May '06). I have a lot of scar tissue and it also hurts for me to stand straight up. It is not something that I ever do quickly. My pain was so horrible that I sought a pain management doctor because I needed more attention than the surgeon could give. I did get relief after a while, but I would recommend that you only take them for a short time if you can because coming off of them is really uncomfortable, to say the least.
I have heard of a lot of alternative treatments such as laser treatment on the scar tissue, acupuncture, and even hyperbaric oxygen treatments. I did do the hyperbaric oxygen treatments to help things heal after all of my treatments. That was really awesome. I felt really good after those.
I have no idea really what to say except that I do know that the scar tissue areas are painful and remain that way. I'm sure you have nerve endings trying to figure out where they belong and trying to settle down also. (Obviously I'm no doctor) For me, I just try to gently massage those areas that cause so much pain. I move slowly and if I can, I let the jets from the hot tub pulsate against that area.
I hope you find some relief. No one should be judging you based on your shaved head and tattoos. That is awful. If you aren't happy with your doctors, find new ones. I would be dead today if I had not switched oncologists when I did. We have to be our own best advocates. Bug the crap out of them until they get the hint that ibuprofen isn't working. Eventually, they will get tired of you. lol The squeaky wheel always gets the oil!
Hope you have a day that is less painful!!
-Rhonda
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Like Lobster said, it could well be adhesions. They do hurt!! The other thing I would say is that it can take up to 12 months for all the insides to settle down. I had a reversal of a colostomy, and it was a good 6 months before I could say I wasn't conscious of pain. I was so terrified of going back to the pain I had had with the perforation. I was really aware of every twinge. I hope you find a solution, and you get some peace with it.
Trish
That might be, however if they are adhesions then they haven't shown up on a CT scan. Don't know if they usually do or not. I mean, every day I deal with varying pain, and I get through it. Not that big of a deal, it is to be expected after all this anyhow. But when I have days that I can't get out of bed, and I am in so much pain that I am an ass to everyone around me, even when I try not to, it's tough. So like my mother-in-law has said, I push through it and keep moving, thinking maybe the pain is in my head. But when I have good days intermixed with really bad days like that, something's up. And I am just tired of getting screwed around. And I would love to get in the hot tub, but I was told obviously with my bag I can't do that, between the heat and water, bye bye bag! LOL So I have an appointment with my primary on Monday, so we will see what will come of that. And if on my good days even, I am in so much pain that this much time has passed after the surgeries and I still can't be "intimate" with my wife. Something is not right.
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Hi Stan, gosh I had hoped you'd be well on the road to recovery by now. My sympathies go out to you. By any chance, is there any way you could get a colonoscopy done... that would show up any adhesions as Lobster and StarUK are suggesting. Perhaps it's time to ask for a gastro specialist to look into it for you. Thankfully, I did get my hernia repaired at the same time and it's given me no trouble at all. But I totally understand your anguish with your hernia... I wanted it seen to before anything was done with my stoma reversal.
So, my recommendation is to ask your primary doctor to suggest a gastro specialist and then ask for a scope and take it from there. Here's wishing you better days ahead! Colm
You and me both, Colm. I had hoped I would be defecating in the normal fashion, well after the surgeries, at least back to my normal bag self. But I just feel at a loss. Cause it isn't any kind of digestive issue as far as I can tell, I really know what that feels like. I am kind of reluctant to have my stoma scoped, cause if they go in the back side they aren't getting very far! LOL I have a gastro specialist, I'll have to go to him to see if there is anything he can do, or try to. In the meantime, however, I at least need one of my doctors on the same page as me, if not hello new doctor, but I am reluctant to start all over as well with a new doctor. It just sucks that EVERY TIME I go, I feel like I am being shunned or I always get the feeling that whenever I tell them how I feel or what I am feeling, that they are waiting for me to finish so they can talk, not that they were listening. I don't know. I am just fed up with feeling this way and getting nowhere!!
A very difficult and frustrating situation-
I wonder if you just need more time- but I say that not sure I understand the timeline of events- but you said 4 surgeries in less than 5 months. That alone seems like an enormous burden for your body to manage and recover from. Seems like you've not had a chance to fully recover from any surgery before the next and your pain is just sorta collecting. I wonder if acupuncture might help relieve some of the pain.
I sure hope you don't have to work through this. Best wishes for relief.
Your post got me worked up on so many levels. The cavalier attitude of your doctors toward your pain made me want to take a trip to AZ to give each doc a good smack!!! In 2009, before I perforated and needed emergency surgery, I spent 5 months in agony due to partial obstructions. At first, I wouldn't go to the hospital, but once I started screaming from pain, my husband practically forced me into it. In those 5 months, I was hospitalized a dozen times. They'd treat me with all kinds of drugs - I'd feel better, go home, the drugs would wear off and a few days later I'd be back. I was in so much pain that putting a bullet in my head sounded like a viable solution, but being treated like a junkie who was there to get pain drugs was the icing on the cake. While my memory of that whole period is a complete fog, my husband told me about one ER nurse who made a number of comments implying I was only there for drugs. I've always had terrible veins - they're short, narrow, they roll, and more often than not, my IVs would end up getting started by a nurse from the ICU or Oncology dept. That same ER nurse, from what my hubby told me, blamed IV drug use for the sad state of my veins. (I never shot up drugs in my life!) On one of these visits, I was about to be sent home since my bloodwork clearly showed I was faking my pain, when an x-ray clearly showed an obstruction. Luckily, they believed the x-ray.
In so many different situations, if my instincts led me to one conclusion but another person thought differently, my first reaction was to assume I was wrong. Most of the time I'd discover I was right all along but just didn't trust myself. Unless you're a paranoid personality, if you have reason to believe you're being misjudged because you enjoy having body art, my bet is on your instincts, not on someone else's prejudices.
In 1978, I finally went to a doctor after being sick for over a year. I was quite thin, but flabby and out of shape. After a brief exam, I was told that whatever it was didn't seem to have hurt me - he never asked about my weight and was unaware that I had just lost at least 50 pounds. I was basically told it was all in my head. A short time later, a very astute gastroenterologist examined me, sent me for a couple of tests, and within 2 weeks had diagnosed me with Crohn's Disease, which few people had heard of back then. (I learned the meaning of Karma years later when the first doctor applied for a job at the hospital where I worked and I was part of the interview team. He showed no sign of having recognized me, although I certainly remembered him.) My point is that I've had this body since the day I was born - even before that - and I may not have the medical knowledge, but I'm the expert on my body. If you're in pain, there's not a person alive who can legitimately tell you otherwise. I've moved all around the country during the last 3 1/2 decades and with each move came a new set of doctors. One of the most important criteria for me is choosing a doctor who listens to me and considers me a partner in determining a treatment. After prescribing prednisone, one Dr agreed with my suggestion to use Entocort, a steroid that generally doesn't have all those systemic side effects. Another Dr, after prescribing a number of different meds, liked my suggestion of adding one at a time so we'd know what worked and what didn't. These 2 docs were confident in their own abilities, unlike the PA who refused to give me steroids for an acute flare-up, insisting on putting me on a maintenance drug instead. I didn't get the prescription filled and never saw him again.
I'd like to see a post written by you in the near future, saying you've found a doctor who takes you seriously and doesn't blow you off because he or she doesn't like your looks or is unable to find the source of your pain and finds it easier to think you're a hypochondriac, rather than admitting his or her own limitations. You deserve better.
Lalu
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Hello StomaStan, I could go on and on but still end up with the same story as yours. I just wrote on Darls's blog. Read it if you can, on the second page. Now why don't you, when it is time to change your bag and flange, get in the tub and take a nice hot bath as it wasn't there. I go swimming and if I want, I take a hot bath. I also have a colostomy, 2 years now. So Stan, good luck with your pain. I have that hernia also, plus 3 others, but read what I told you earlier. It may sound like you... Let us know how you are. Your friend, Sharon.
Hi again Stan, just to let you know I was scoped quite often between surgeries and including one through the stoma to check on any polyp development. I was given an anaesthetic so I wasn't aware of anything and felt none the worse after. But I'd rely on the gastro specialist's opinion first. Oh, I do hope you find some peace soon. Take care, Colm
Sorry to read that you are having a difficult time.
I think that a CT scan would be unlikely to show details of adhesions, but it would show up a foreign body such as gauze/instruments that in rare instances are left behind after surgery! A colonoscopy will reveal any narrowing/obstruction of the intestine.
If you continue to experience pain once adhesions have been excluded, then I would think that you might have 'neuropathic pain'. The brain can sometimes get a little mixed up when it has to deal with chronic pain, and if it is that sort of pain that you are feeling, then a referral from your doctor to see a pain specialist, usually found in a big general hospital, might help.
Everyone who has posted here has had something good to say... I also had something like 5 surgeries over several months back in 2003. LOTS (hundreds) of adhesions grew between 2003 and 2009 when I had my permanent colostomy. None were ever seen on any imaging study.
Also, I agree you are not many months post-op for all that you had done. Many of my organs have been moved around and jammed up under my diaphragm, etc. Surgeons won't help you with the pain. The only physicians I have seen that have any knowledge of true pain control are oncologists and alternative medicine specialists. At one point, I was on MS Contin, a long-acting morphine, for 3 years for my intense level of pain.
Also, don't be afraid of colonoscopies through the stoma. I've had several with no problems. It's that horrendous prep that remains the problem!!!!!!!!!!!!!!!