7.01.2010

No surgery!

At least for now, anyway. I had an appointment with the surgeon that did my tests last week. Jarrod had the impression from his talk with him last week that he would need to remove the lipoma in my colon pretty soon, but he told Jarrod he needed to review the information again and do some thinking. Well I guess when he went back and reviewed the pictures from the procedure he decided that the risks of surgery outweighed the benefit of having it removed right now. To remove it would mean taking out part of my colon, which is pretty serious and there are all sorts of complications that could happen. Since this spot (probably about the size of a gumball) shouldn't be causing me any pain and isn't actually blocking anything he wants to leave it for now. He will continue to watch it and if it does get large enough that it is causing problems then he will remove it.

It just so happens I was having one of my "episodes" it started Tuesday night and hadn't gotten any better, if anything it was getting worse. I was telling him about it and then I re-told him how a few years ago I was having a lot of problems and my doctor then thought I was lactose intolerant, somehow that sparked a thought about another doctors daughter that had very similar symptoms. He even took her gallbladder out and she was still really sick all the time. Finally she was tested for Sprue, which is just basically a food allergy to gluten. Turns out she had it! And she started eating a gluten free diet and is back to normal. So, yesterday he sent me to have some blood work done to see if I too have sprue (it's also called celiac disease) we should know something in a few days. It really does make sense because I feel worse after I eat and rarely do I eat and not have bread or something with wheat flour in it (it's in almost everything!). After doing some researching on my own and I pretty convinced this is what it is and I read that lactose intolerance is common in people with celiac sprue, vital improvements occur when a lactose-free diet is introduced Which is what I did several years ago and I have been fine until around February.I also read that having surgery, or even pregnancy can trigger (not cause) it. Hmm. . .and the symptoms are identical to what I have. I am not excited about having to drastically change my diet, but it's better than surgery and if it makes me feel better again then I will just have to make the commitment. At least now there are more products available than there used to be. Jarrod even found a web site (GlutenFree.com) where you can get just about anything gluten free- even pasta! So, maybe it won't be so bad.

If that test comes back negative (sigh.) then he suggested we do more tests. Up next would be a CT scan on my large and small intestines to see if there might be something there causing my problems (like another lipoma or ulcer). If that too comes up negative then we will meet back with him again and discuss our next move. He still is 100% sure it isn't my gallbladder or this lipoma. He said that lipmoas are never painful and that my symptoms are not similar enough to the symptoms of a person with gallbladder problems. He also said that IBS is still a contender. If both of these tests come back negative they might try some different meds for IBS and see what happens. He said he can be very, very, painful and has seen people in the ER thinking they are dying and it was just IBS. But he did say that nausea and vomiting are not normally associated with IBS, but since there are no tests that can confirm IBS, it's mainly a disease of exclusion (nothing else can be found) and it can be so different in different people, who's to say that's not my problem after all? Ugh. 

I left the Dr.'s office feeling pretty good. He doesn't think I need surgery, so that was a major surprise and a welcome one! Hopefully we will know something about the Sprue test by Monday or Tuesday.

3 comments:

Kayce said...

I never thought of celiac either. Though I know a lady whose husband was sick off and on for years with stomach problems and would go on an ice cream, mashed potatoes, bread diet for several days and would get better. I'm not sure how they finally figured out it was celiac,though his "diet" wasn't helping the problem.

There used to be a store on SW Drive that sold gluten free products. The owner and her daughter both had celiac, which I guess is what prompted her to open the store. Celiac is much more common than most realize. That would stink if you had to have a gluten free diet BUT I had rather live with that than be miserable all the time and not know why. Hope you get your test results soon!

kristen g. said...

I thought they would have put you an a GF diet a long time ago, I didn't know you hadn't tried it or I would have suggested it myself! I know of a few people w/ celiac and they all say it's amazing how much better they feel after going gluten-free. THere are LOTS of products out there that have gone GF, it's so much easier than 5 years ago. No matter what, I will keep praying they find the cause of all this. I hate to hear about you in so much pain. Love you.

amber leann said...

So glad I got the chance to talk with you the other night! Still praying for answers!