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I haven't written in awhile ladies, although I surf quite often. Things are going well, except for one thing. I have had two intestinal obstructions since January, the last just yesterday.
That makes three within about a year's time. The first one, I was hospitalized for 4 days, they did an endoscopy and came back with scar tissue from radiation and surgical scar tissue being the cause. My radiologist and oncologist had warned me that this might happen about two years after my treatment since I had extensive radiation and surgery, and sure enough, about two years out was when I had my first episode.
When the other two happened this year, I knew what to expect, and could ride it out at home, but it is extremely painful. There's not much that can be done, except additional surgery or hospitalization each time.
My brother, who has had two bouts of colon cancer and has had two surgeries for scar tissue removal, said they did the first surgery after about 4 years of obstructions. I'm not sure I can do this for four years, but basically the surgery is only a temporary measure, since new scar tissue will form with the surgery.
Those of you who have had this know it's a very painful condition, one in which can cause shock and loss of consciousness.
I'm just very frustrated right now. This last bout, I was extremely dehydrated throughout and could only take small sips of water for about 10 hours. I finally vomited enough to start feeling better. Am extremely sore right now by my stomach and abdomen, but thankfully, not any stabbing pain.
For any of you who have had to deal with this -- do you have any suggestions, other than the hospital and morphine/dilauid, that will help me get through this? I'm very lucky that my brother is familiar with this, and made sure he was with me through the worst of it, in case we had to call an ambulance, but it is very scary.
I don't know any thing about obstruction due to previous radiation, but I have no doubt it is extremely painful. I'm so sorry you are having to deal with this after all that you have been through.
I have been thinking of you in the last few days as I was with the wife of a friend of my husbands, and it turned out that she had three primary cancers due to Lynch Syndrome. I wondered how you were doing? and now find that you are dealing with these health issues. Drat!!!!
I hope someone comes along who can provide some information that will help you.
I feel your pain. For a number of years after completing treatment I had what my gastroenterologist termed "intermittent partial small bowel obstructions," most likely the result of surgery and radiation. These attacks can come from any type of trauma to the abdomen and pelvis. People can even start to experience these attacks after being involved in automobile accidents.
It will be 10 years since my diagnosis in April, and I would like to tell you that the attacks only lasted for a year or two. However, I did experience them for about 5 or so years. HOWEVER, their frequency did diminish over the years. In fact, I thought these attacks were gone and then experienced one after 2 years of not having any at all.
I'm not sure if what I'm experiencing is the same as what you are having (I never lost consciousness, although given the pain that would have been a welcome relief). But here's what my attacks were like: pain starting below the rib cage, starting at first as discomfort and then waves of pain increasing in intensity, abdominal distention, sweating and chills. The pain was very severe, often only relieved by repeated vomiting and/or bowel movements.
I went to the ER twice and they did CT scans and gave me IV fluids. Often by the time I got to the ER the worst of the attack was over, so I would just wait it out and was sent home when the scans showed that the suspected obstruction had resolved. In my case, an obstruction was never actually seen on imaging. I was never admitted as an in-patient.
What I learned over the years:
(1) My gastro recommended that as soon as I feel the first rumblings of any abdominal discomfort, do not eat or drink anything. If there is an obstruction starting to happen, adding anything to your system will only cause the pressure to intensify, as any food or liquid needs to go somewhere and if things aren't moving freely, putting anything else in there will only increase the pressure. This has worked extremely well for me. I simply stop eating and drinking for as long as it takes for the discomfort to abate.
(2) My gyn-onc said that surgeons are often much too quick to attempt to solve this problem with additional surgery. He said that this often actually makes things worse because most of these problems resolve on their own without surgery and additional surgery causes additional scar tissue. He has agreed if there is ever a time I need additional surgery, he will do it. Both he and I hope that never happens, though.
Since I have been following my gastro's advice and with the passage of time, I currently experience virtually no full-blown attacks. I felt like one might be coming on about 4-6 months ago, and just stopped eating and drinking. In about 12 or so hours, the feeling had passed.
I hope your attacks lessen and disappear quickly. Glad to hear you are otherwise well.
Incidentally, I have a friend who was diagnosed with colon cancer around the same time as my EC diagnosis. She had the same type of attacks for years (we used to compare notes) and her attacks have all but disappeared as well.
MoeKay, thank you so much for your reply...yes, you described it exactly!!! Some people think that you are talking about the pain you feel when you are constipated, and you and I both know, it is much worse than that!! The stabbing pain, that consistently worsens, until all you can do is moan on a couch and wait for it to pass....The first time scared me so much, I thought my cancer was back, because the pain had started so high up under the rib cage -- mine's a little to the side also.
I'm so glad to hear that there might be relief in sight somewhere down the line. My brother's is a much more serious case, with two cancer surgeries of the intestines, and having to live with a colostomy for many years. We compare notes, and he suffers them almost every two weeks. Mine seem very intermittent. We've both noticed when we eat starches more than two days in a row we have a tendency to feel the pain.
As I mentioned, my brother's doctor waited almost 4 years before operating on him; he was hoping it would subside on him as it does most. My doctors have said the same thing yours have, and I'm hoping that my obstructions will also reduce in occurrences and intensity.
Baylee, thank you for thinking of me. Yes, I also had three primary cancers due to Lynch, so I know what your friend has gone through. Please tell her that except for the intermittent obstructions, I have had no issues since finishing treatment in May 2006. I haven't had so much as a Urinary Tract Infection (which is amazing since I would get about 4 a year before the bladder cancer was diagnosed). Nicest thing about Lynch: we have a much higher "cure" rate than the normal cancer population and a longer time between recurrences usually.
I feel so much better talking to the both of you. By the way, the soreness is almost gone from this recent episode -- while I'm functional the next day after the obstruction clears, I tend to experience about 2-3 days of soreness in my stomach, abdomen and side. It's getting better!!!
How great to see a response from you Moekay. And, it looks like you gave Will some 'been there' information that can help her see that she may well move past her current painful obstruction issues, given time. I am always grateful myself when someone can share their personal experiences and illuminate the road ahead.
Will...the friend has been going through this for about 20 years. She's had chemo twice and plenty of surgery. The fact the cure rate is good explains why she is still going strong. I believe she has a subset of Lynch and she claims her blood specimens have traveled much further around the globe ( to be studied) than she could ever hope too ;-) She is an unusual case. I remember when she was talking about her cancers and I said it sounded like Lynch. She practically fainted that I knew what it was....and then I mentioned my dear HS sister who helped enlightened me and many others. Knowledge is a powerful thing!
Well, I better stop blabbing away. It was just good to see you both here on the board. Miss you ladies.
Hey hon, first my doc gave me a liquid anti-spasmodic. It helped with that crushing/stabbing/twisting pain that came shortly after eating. I also took some left over percocets and would sit with a heating pad over the irritated area. Those 3 things seemed to do the trick to lessen the pain within an hour or so.
Also, my first reaction was to curl up, but I learned that stretching out a bit and massaging the area that hurt helped too. Sometimes it hurt to do it, but it helped over all.
When it started to flare up I would immediately got to a mostly-liquid diet for a few days. Soups, tea, yogurt, jello. Eventually I would do the liquid diet a couple days a week just to keep things moving. Whole grains, dairy, and high fiber would really do a number...almost as bad as when I was having radiation.
I sure hope it starts to heal on it's own. I only dealt with mine for about 6 months before the doc said it was time for surgery. I had numerous flareups that lasted just a few days at a time, but it was horrible to deal with. The last one the doc gave me the option of waiting it out while on IV fluids (I was already on my 4th day of that without improvement) or going to surgery. I went to surgery.
You all are a wealth of information. For years since surgery and radiation, I had had some intermitent abdominal pain followed by diarrhea.
Two nights ago, I woke up with the same kind of gripping pain around two in the morning. I never did get the diarrhea, instead I started throwing up. The pain became so bad I was crying and moaning. I have never felt pain like that. It continued all day until my DH finally took me to the Doctor yesterday afternoon. While at the Doctor I pretty much empited my stomach by throwing up. He sent me to the ER.
By this time I was dehydrated, had a horrible headache, and just felt terrible. The pains had lessened in frequecy and severity by then. They gave me fluids, morhpine, Nexium, and Zofran. They took blood and urine. He said that the blood work did not really show anything and he sent me home.
This morning I am still shakey because I have not eaten anything in over 36 hours. I am scared to eat anything. I am still tender but the gripping pains are just very slight now and not very frequent.
I know you are not Doctors, but you do have experience. Do you think I could have had one of those partial bowel obstructions? My symptoms sure felt like what you discribed.
I haven't had an obstruction yet (thank God), but I do have a lot of issues with my colon and bowels because of the radiation. Dr. calls it radiation colitis and says there is scar tissue there.
I have to watch what I eat and whenever I feel pain or pressure building, I switch to all liquids and yogurt and other things I normally have to avoid that cause diarrhea. So far, it's been helping to avoid any obstructions.