Aa
Walking around with a ruptured appendix...
December 1999 I had emergency surgery for a ruptured appendix. the infection was so bad it collapsed my frontal lobes and spread throughout my abdomin. It took four litres of saline solution to clean out and my intestines had to be cleaned outside of my abdominal cavity. A week or so after surgery I became reinfected and had to have my stitches removed so I got to watch my the hole in my stomach slowly healed. Ever since then I've had a lot of pain and was diagnosed with IBS. This September I had a laporoscopy to remove scar tissue on my right ovarie and fallopian tube and my bowl. I tried going back to work recently but am in constant pain. Eating, physical activity and stress seem to make my symptoms worse. I work as a health care aide right now but I believe that the shift work and extreme physical nature of the job will not be good for my health. I don't know what to do or what specialist I should see. I want my life back and I want to feel good for once. What are my options?
You aren't alone by a long shot! There are more of us adhesions people out here than you might realize. Do a Google search on ARDS - Adhesion Related Disorder - and you'll learn a bit more about it. I hope that if you do have another surgery, that it will be your last. :-)
Oh Ruthy. I feel your pain. I've lived with abdominal adhesions for years. It's painful and Dr. Junig is right that more surgery generally makes the scar tissue worse, so surgery needs to be avoided as much as possible. You might get a few weeks or months of relief, but all it takes is one bit of scar tissue to form in the wrong spot (like on your bowels) and you're right back in the mess again. The amount of infection and related inflammation from a ruptured appendix can cause adhesions to form in a whole lot of places. Right now, there is no "cure" for adhesions, and no reliable way to prevent them.
I spent years going in and out of surgery hoping, like you, that THIS time would be the last time and I could go back to my normal, productive life. If, after a couple of surgeries for adhesions you don't see consistent improvement, you're going to have to redefine what "normal" means. Dr. Junig is right that you need to keep moving as much as possible.
You're going to have to take a hard look at your diet as well. I have lived on liquids for years. It was either that or throw up everything solid I tried to eat. Drinking my nutrition was the only way I could maintain enough calories to keep working, although I am past any kind of work outside my home now. Take a look at low-residue diets and see if that's a little more tolerable. Avoid fiber unless it's water-soluble like citucell. Psyllium husk fiber caused a total blockage in me.
Some people tend to develop scar tissue more than most. I hope you aren't one of them because living with severe adhesions means a major lifestyle change. While it's true that opiates slow down transit time in the bowel even more, I haven't had too much trouble in that direction - likely because of all the fruit smoothies I drink. I've noticed that the fentanyl patch helps my pain the most without any dizziness or mental changes. Oral meds seem to cause the most trouble with constipation and slow transit, but maybe that's in my case only.
Even with opiate therapy, there is more than enough pain to slow me down. If it were only pain, I could probably still do some kind of work. Add nausea and vomiting to the pain and it's an entirely different story. Once I was unable to keep even smoothies down, that was the end of my working life.
There is only so much medical science can do for adhesions, and it isn't much beyond treating the symptoms. The bulk of it is left to the patient to find some way of living with the pain and nausea until you're completely obstructed.
A very good gastroenterologist MIGHT be able to break up adhesions in some partially obstructed areas in the colon with a scope (colonoscopy); but it's not something that helps 100% of the time. If the worst of the the trouble is around the small intestines, forget it.
I spent years going in and out of surgery hoping, like you, that THIS time would be the last time and I could go back to my normal, productive life. If, after a couple of surgeries for adhesions you don't see consistent improvement, you're going to have to redefine what "normal" means. Dr. Junig is right that you need to keep moving as much as possible.
You're going to have to take a hard look at your diet as well. I have lived on liquids for years. It was either that or throw up everything solid I tried to eat. Drinking my nutrition was the only way I could maintain enough calories to keep working, although I am past any kind of work outside my home now. Take a look at low-residue diets and see if that's a little more tolerable. Avoid fiber unless it's water-soluble like citucell. Psyllium husk fiber caused a total blockage in me.
Some people tend to develop scar tissue more than most. I hope you aren't one of them because living with severe adhesions means a major lifestyle change. While it's true that opiates slow down transit time in the bowel even more, I haven't had too much trouble in that direction - likely because of all the fruit smoothies I drink. I've noticed that the fentanyl patch helps my pain the most without any dizziness or mental changes. Oral meds seem to cause the most trouble with constipation and slow transit, but maybe that's in my case only.
Even with opiate therapy, there is more than enough pain to slow me down. If it were only pain, I could probably still do some kind of work. Add nausea and vomiting to the pain and it's an entirely different story. Once I was unable to keep even smoothies down, that was the end of my working life.
There is only so much medical science can do for adhesions, and it isn't much beyond treating the symptoms. The bulk of it is left to the patient to find some way of living with the pain and nausea until you're completely obstructed.
A very good gastroenterologist MIGHT be able to break up adhesions in some partially obstructed areas in the colon with a scope (colonoscopy); but it's not something that helps 100% of the time. If the worst of the the trouble is around the small intestines, forget it.
MEDICAL PROFESSIONAL
Ouch. Not a good problem. The scar tissue causes pain, and the more you try to remove the scar tissue, the more scar tissue that takes its place. The specialist you will want to see is a general surgeon or a gastro-intestinal surgeon or a colon surgeon-- I answered this question just recently and wondered if there are any 'cocktails' that help reduce scar tissue formation. When I was an anesthesiologist, after the painstaking work of trimming off the scar tissue the surgeons would sometimes add a liter or two of saline mixed with an anti-inflammatory medication... but it was mostly hocus-pocus rather than evidence-based medicine.
BUT... there are some things that you are not quite right about, that could have a profound impact on your life. You will do much better in life-- and be much more active ten years from now-- if you continue to work at a physically demanding job. You do NOT have something like 'missing cartilage' in the knees, where every step adds more wear and tear. You will have constant pressure to slow down, sit down, lie down, work less, sit more.... and if you give in to those feelings, you will get trapped by them. I know it hurts. But do EVERYTHING you can, every day. Keep moving.
Many people make the mistake of thinking that 'rest' will help. It won't. It won't even help a little bit. If you rest, you will only feel the need for more rest. And the more rest you get, the more you will feel an insatiable need for rest. Keep moving!
Yes, there are things that can truly slow you down-- a bowel obstruction could require that you take it easy, or that you even have more surgery. And there may be days that you can do very little. But always try to do just a bit more.
I do not think you have 'IBS'-- I don't know how that could be diagnoses in the presence of all the other stuff you have going on inside. I would resist opiates like the plague; any relief you get will be short-lived, and the slowing of your bowels from the opiates will set you up for obstruction.
A tough situation. I hope that a specialist in GI surgery can offer some real help for you.
BUT... there are some things that you are not quite right about, that could have a profound impact on your life. You will do much better in life-- and be much more active ten years from now-- if you continue to work at a physically demanding job. You do NOT have something like 'missing cartilage' in the knees, where every step adds more wear and tear. You will have constant pressure to slow down, sit down, lie down, work less, sit more.... and if you give in to those feelings, you will get trapped by them. I know it hurts. But do EVERYTHING you can, every day. Keep moving.
Many people make the mistake of thinking that 'rest' will help. It won't. It won't even help a little bit. If you rest, you will only feel the need for more rest. And the more rest you get, the more you will feel an insatiable need for rest. Keep moving!
Yes, there are things that can truly slow you down-- a bowel obstruction could require that you take it easy, or that you even have more surgery. And there may be days that you can do very little. But always try to do just a bit more.
I do not think you have 'IBS'-- I don't know how that could be diagnoses in the presence of all the other stuff you have going on inside. I would resist opiates like the plague; any relief you get will be short-lived, and the slowing of your bowels from the opiates will set you up for obstruction.
A tough situation. I hope that a specialist in GI surgery can offer some real help for you.
Thanks again..I'll do that!
Wow thank you so much for your comments. Just knowing that someone else has been or is going through this makes me fell less alone.
I saw my Dr today and he did agree with me that I shouldn't be a health care aide for now but suggested re-incorporating physical activity into my life at a slower pace so my body can get used to it again. Before this last surgery I was very active. In my job and I exercised every day for a least an hour...I almost got abs!
So I was referred to a GI specialist and made a follow-up appointment with my surgeon to ask his advice as well. As for working I'm still going to but not in the same capacity as I did before. I also have an opportunity to go back to school which would help re-train me for a less physical occupation.
Again I want to thank you for your comments, they really meant a lot to me!
I saw my Dr today and he did agree with me that I shouldn't be a health care aide for now but suggested re-incorporating physical activity into my life at a slower pace so my body can get used to it again. Before this last surgery I was very active. In my job and I exercised every day for a least an hour...I almost got abs!
So I was referred to a GI specialist and made a follow-up appointment with my surgeon to ask his advice as well. As for working I'm still going to but not in the same capacity as I did before. I also have an opportunity to go back to school which would help re-train me for a less physical occupation.
Again I want to thank you for your comments, they really meant a lot to me!
Thank you so much for your reply. The one thing that I am worried about is if I go back to work and have this pain I may not be able to be a productive as I need to be and that is not good for my patients or co-workers. I have to be reliable and right now I'm not. I did go back and work a few night shifts but the pain hampered me and I had to put more work on the nurses which isn't fair. I do want to work, I'm not giving up but I would like more time to find out why I have this pain still and what I can do to manage it.
What do I ask the surgeon? I've been living with the idea that I've been suffering from IBS for nine years now...where do I go from here?
Also a couple weeks ago I tried exercising to build up my stamina. I walked/jogged in intervals for an hour with a 5 minute break inbetween. I drank lots of water and had eaten breakfast and lunch that day but I ended up vomitting and had an extrememely bad headache and abdominal pain...what did I do wrong?
What do I ask the surgeon? I've been living with the idea that I've been suffering from IBS for nine years now...where do I go from here?
Also a couple weeks ago I tried exercising to build up my stamina. I walked/jogged in intervals for an hour with a 5 minute break inbetween. I drank lots of water and had eaten breakfast and lunch that day but I ended up vomitting and had an extrememely bad headache and abdominal pain...what did I do wrong?
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