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Post by 1234 on Sept 8, 2012 17:54:04 GMT -5
Hi you all. I wanted to ask advice on what to do.
Since my surgery (1.5 years ago), I've had increasing problem from adhesions around my bowel--I can actually feel them easily on my right side--I have the loops/blobs of intestine and tissue that I can push around on my right side, particularly worse on my more painful days. I've also had increasing problems with constipation, having tiny BMs, etc. All of these problems--the pain, the constipation--have gotten worse in the past few months, and much worse in this cycle (last 20 days or so). I'm also more and more exhausted, which feels related. Oddly enough, my asthma has gotten worse too and I feel like it's related, which I know doesn't make a whole lot of sense.
Any ideas on what I should do? I can still poop, just not anything like normal or normal frequency. I had sort of figured that as long as I'm pooping, I'm ok...but am starting to get a little scared by the changed pain and habits and exhaustion.
anyway, would like yalls advice.
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Post by Karen on Sept 8, 2012 18:05:17 GMT -5
I'll let the others chime in on the sbo, but the connection to worsening asthma is likely no accident. Gut issues can affect allergies... issues in your gut mean issues with your immune system. Seems odd because they seem like different systems but they are very much connected.
Please tell me you'll see a doctor?
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Post by semicolon on Sept 8, 2012 19:54:52 GMT -5
Oh no, Rust! First off- pooping anything is good, but if you can't pass anything for too long (youll know when) it gets serious fast, get your skinny ass to the ER! Having had both lbo (large bowel obstruction) and sbo (small) I know the symptoms are different (I'm sure Omak can chime in too). For the lbo, for me it was constipation or diarrhea, and vomiting is going to be more of a sign of advance blockage (but the pain and nausea can accompany those awful bm's, see my next note) . For the SBO, vomitting is the biggie since it is higher up - and I'm talking persistent heaves for many hours, not just a boot here or there. The pain is much higher up, toward the stomach. If its right side, I'm thinking it's the ascending colon. Mine was sigmoid, and during that time of the month I could feel the smallest fart travel through my bowels for a good several minutes before anything would squeak out. I'm not familiar with your first surgery, did you have endo on your right ovary, or endometriomas? My left ovary was stuck to my colon and then all stuck to the sidewall- do you feel anything lumpy on that side? I have no idea how long it took to get that bad but my colon was down to a less than a pencil width (that's why the colonoscopy couldn't be completed) and BMs during my periods were excruciating. When was your awful colonoscopy? What did they say about that? As for the fatigue, any time I have bowel issues I am completely wiped, sometimes almost flu-like. I think it's the lack of adequate digestion and absobtion of nutrients (as well as the spasming of the colon). I think you need to see a doc, endo or GI or both and they may want a CT scan or barium enema (I dont wish that on anyone Who did your surgery? I know you are already good on your diet, I'm not sure I have much to offer since I'm the diarrhea queen. Sorry for all the questions and blabbering, but I feel for you and worry about you too!
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Post by 1234 on Sept 8, 2012 21:08:16 GMT -5
Thanks so much, both of you. It's really helpful. it's hard for me to know when I need to do something. We get so used to pushing past the pain. and it seems you can keep pushing past it and keep pushing past it. I don't really know when to get scared anymore. Honestly, it's the fatigue and the breathing difficulties that started to make me scared, not the pain/constipation/nausea.
Karen, I've really thought the asthma was related! now I don't think I'm crazy. THANK YOU!
Semi, thanks for all of teh details. I do feel like I almost have the flu, and have felt like that for a couple weeks. It has been harder, and harder, and harder to run, and I get back after a run and fall asleep for a few hours. Which is ridiculous. I am still able to poop, but not nearly as often as normally, and everything is very small. I have had teh same pain with pooping/farting for a very long time--since I came off the pill a few years ago, before my surgery. And yes, the lumpy feeling is exactly what I'm feeling--I have been for about a year, actually, but it keeps getting worse. only for me it's on the right side. it goes from my just above adn inside my right hip bone to my right rib. it is lumpiest at ovulation--it's one of my ovulation signs, actually.
Alright folks, once it's Monday I'll call the doctor and see what I can do.
And with my surgery, I had endo/adhesions pretty much everywhere. My surgery report isn't very detailed, but it says "frozen pelvis" and "extensive Stage IV endo". It was definitely much worse on the right ovary/right side. Bowel involved, etc. it seems that most of what the surgeon did was cut apart the adhesions, not cut out any of the endo, so I'm really worse than I started, in some ways. But much more educated now!
thanks so much.
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Post by Karen on Sept 9, 2012 9:40:51 GMT -5
I know you're a trooper and are doing everything possible to treat your body well, but I'm glad you'll make some calls Monday. That's awful that your last surgeon did so little. You deserve much better care than that!
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Post by 1234 on Sept 9, 2012 19:21:00 GMT -5
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Post by semicolon on Sept 9, 2012 19:30:31 GMT -5
I've read that one (same info from s different site). Good news, Cheez Whiz is good to go on a low residue diet!
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Post by JC on Sept 9, 2012 19:37:38 GMT -5
I think you have a good plan calling the doctor. And YES you will come visit me if you get worse! I work Tuesday, Wednesday, and Friday 7a - 7p. The staff at Georgetown are amazing so you will be well taken care of!
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Post by 1234 on Sept 10, 2012 8:05:59 GMT -5
I will file those days away in my mind! I just scheduled an appt for this Saturday. Glad I got that done.
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Post by JC on Sept 10, 2012 8:44:33 GMT -5
Awesome! You got in pretty quickly! I have a feeling he might suggest another lap. How do you feel about that? Would you consider it?
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Post by 1234 on Sept 10, 2012 9:53:21 GMT -5
I have to. I am so sick and horrible feeling. I don't see another way out, at the moment.
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Post by JC on Sept 10, 2012 10:23:37 GMT -5
I'm so sorry Kristen. That's really awful. I know you try your best to take care of yourself and it just sucks to see you still feeling so sick. I hope that Dr. Belizan can help you!
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Post by Karen on Sept 10, 2012 20:11:20 GMT -5
I'm glad you were able to make an appointment and get in so soon. I know you've been trying to manage things on your own but I'm glad you're trusting your gut on this one and considering a lap. Please keep us posted on how you're feeling and how your appointment goes?
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Post by 1234 on Sept 15, 2012 17:35:31 GMT -5
So, I'm scheduled for surgery on Oct 3--I am really grateful they could get me in so quickly.
The doctor started by talking honestly about the fact that I have really severe endo, and that it's a really tough frustrating disease. He talked briefly about a hysterectomy, but didn't push it when I said I didn't want it. He said he'd do his best with another lap, that he didn't think that the previous surgeon had done anything for me. He expects the surgery to be about 6 hours, and will have a bowel surgeon there. He said he's try to take out as little of the intestine ans possible, but given my colnoscopy records, some is going to have to come out.
Clearly this is much more extensive surgery than I had intended--I was focusing on the bowel obstruction. But I always realizing as he was talking that as long as I'm having surgery, I should try to do the best I can. I really like the doctor and trust him; I trust his knowledge of the disease. So I'm going for it. I can't keep on as I have been keeping on, I think--it's just too much pain.
The doctor also wants to try Visanne afterwards--it's approved everywhere in the world except for the US, and since he's registered in several different countries (he does surgeries in Europe and South America), he can prescribe it? It sounded a littel bit sketchy to me, but ... I'll think about it. I know how I react to hormones and don't like it, but if it's just a pill, I can take it for a bit and see. I don't know--I'll think about it.
Anyway, so that is that. I sort of collapsed in tears after leaving his office just from the stress release of all of this. I'm glad I'm now doing the surgery. I really hope that it will help me get another chance at trying to get a handle on this pain. I now know so much moare about this disease--thanks to you all! and I'm going to a much better surgeon--thanks to Jenaya for finding him! So, I feel good about it.
Thanks for all of the support. Woohoo for surgery!!!
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Post by Karen on Sept 15, 2012 17:46:08 GMT -5
Wow, that is quick! You've been pushing through it for so long that I hope you'll get some serious relief with this surgery. I'm glad he's going to spend some time on your bowels, too, and have another surgeon in there. I'll be keeping you in my thoughts!
And that was very sweet of Shane to join you. It helps to have others see what you're dealing with so they know how to support you.
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