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Discussion Starter · #1 ·
Hello...This is going to be long so please be prepared...:>Around Oct '98 I started having symptoms of IBS. Lower left abdominal fullness, became more gasey, stools became narrow (ribbon shaped to pencil thin). I noticed my stool looked compressed on one side on what would otherwise be a "normal" looking stool and on other days just plain flat and mushy like. I went to a GI and had an Endoscopy, colonoscopy, ultrasound of my abdominal region and other areas and some blood test.Nothing found. Fast forward to July 99...I get hit with a Pulmunary Embolisim. The Doctors suspected it was caused by a DVT. While in the hospital I was checked for cancer as the cause of my PE. I am physically fit (6ft 189lb) and 32 years old, I think the internist felt cancer could be the source of the clot. I had CT scans (barium, yuck!), xrays of my lungs, blood test. Nothing was found!Fast Forward to Dec 99... I went and saw the internist who took care of me in the hospital. Still having the side discomfort and stool issue. He did a small bowel series which came out fine. Later that week he told me I probably had IBS due to the lack of anything they could find. Said I looked "too healthy". So since Dec 99 I have been dealing with a feeling that I was misdiagnosed, that since my stools and discomfort hit me before the PE that there is cancer somewhere in me and they just can't find it. In the last few weeks I have started to have lower back discomfort that extendeds to my hip (only on long trips does it affect my hip) and a more pronounced discomfort in my left side (it comes and goes). My stools, have not been normal for over 2 years (shape,size, Mucos in there sometimes) not once....Still with me? Hope so..I have a few questions for anyone reading this...Oh and for the record, I really don't battle constipation or diarrhea anymore than I had pre IBS and blood was never found in/on my stool.Anyway here goes the questions...A> Has anyone looking at my story experienced anything close to what I just described?B> Do you think I should get a second opinion?I have other questions but it is almost 3am and I just had a 16hour workday. I'm not exactly altogether with it (mentally) right now..
Anyway, any replies via the board or email would be much appreciated. The thought of cancer scares the hell out of me, I watched my mother die from cancer for 2 years.Both my aunts died of it as well, my father passed away right after I noticed my first IBS symptoms. SO you can see where I am coming from. Please forgive the ramblings of a sleep deprived zombie, I was just really excited to find this board and others who can relate to what I'm going through....Okay, off to dreamland.Thanks for reading,Hed
 
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Discussion Starter · #2 ·
Hi HedI haven't got symptoms like yours but I do relate to your fears! I have found that it helps to talk about them but also I'd rather pester my Dr. than worry myself stupid. Have you told him/her about your fears? What was the response? If you haven't perhaps you could - I think that blood work can detect the presence of cancer (not sure though - maybe someone else can help here). Hope you had a good nights sleep - albeit short - and yes getthat second opinion.Go wellRoz
 

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Hi Hed,I recognize some of your symptoms. Years ago I was suffering from stress-induced constipation and did not pay very much attention to it. Did not know anything about IBS or whatsoever. The complaints however got worse and seemed to grow more complex: I started having severe pains in my left-side abdomen and the pain was also spreading to my hip (left side). Pains did come and go but always appeared related to the bloating and the colon-pain. In the weekends there was some relief. I went to the doc and he advised me to do more excercise, eat more fiber and in general to solve the stress situation. After some more years I started to get really worried about the pain on my left side spreading from internal organs to my left hip and getting worse when I did excercise like racing my bike. I concluded I must have some form of cancer. I went to the doc and he said cynically but friendly that if it was cancer I would have been far worse by now. He checked me again and some blood and stool tests were done and all was negative. He then told me about IBS. Since then I have found more info about IBS especially on the internet and this board. When I first read the Rome criteria everything fell into place: I recognized this was my problem, I fitted all 5 criteria. In the meantime my IBS has changed (or maybe I should say I changed it): I now alternate between C and D (with the ribbon-like mushy stools you described) but both are not really severe. I also still most of the time have this pain which spreads to my left hip and even left leg. But I don't think it's cancer anymore I know it's IBS. I think in IBS the mind-gut communication is out of sync and these pain-sensations can indeed spread via neural pathways to other parts of your body, most likely the ones near to the lower-end of your colon which means to your left side.I cannot advise you on having more tests and/or a second opinion. In general (when I read this board) I have the impression that there are big differences in how the medical system is working in various parts of the world. In Holland I think we are less prone to immediately going to a doc and when we do we do not readily get extensive checks and tests. Using all kinds of medicine simultaneously is also someting which most docs advise against, especially with unclear, functional disorders like IBS.If you still think you have cancer however, maybe you should ask some straightforward questions about this to your doc. Tell him your afraid of it and ask if all the possibilities for this are eliminated. If so, try to reconcile yourself with the unclear (alas) IBS diagnosis and start working on this. I can only say I recognize most of your symptoms and to me they seem to fit in the IBS-thing.be strong, take heart!------------------Pepe from Holland sends regards C/D type
 

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Hi. Scary symptoms. I know...before my IBS onset I was in hospitals repeatedly for over 3 years (age 9 to 11) and had so many lower GI series it became a lifestyle. Ended up that there were combined organic and functional problems, so the surgeons corrected the organic stuff, and I struggled with the functional digetsiv problems for 35 years thereafter.I think before you settle on a Dx of IBS as the sole cause of your symptoms, or fearing it is a cancer, that you must be satisified that a complete workup was done. It sounds like it what with BE, US and repeat endos including colonoscopy...I just wonder are you being seen by a board-certified gastroenterologist for this? It has been my experience with the docs I work with over the years the BEST way to be SURE your problem really is "functional" is to exhaust the differential diagnostic process for everything else under the care of a Board Certified Gastro. THEN if no relief is achieved because NO organic cause can be found THEN start looking at the possibility of allergic, immunologic, enzymatic and other hidden pathways that other people can find with other technology. But this should be last not first. Virtually all the IBS patients we and our affiliate docs and dieticians work with are only people whose prior workups have COMPLETELY ruled out (or otherwsie identified and are treating) organic causes, leaving exploration of functional disease to last. This way there is little chance of missing the fire while focusing on the smoke. While you do that (make sure a board certified gastro is working you up, or try 2...some are just different than others in their approaches) it would be wise to learn about dietary modifications from a dietician qualified to teach you how to get on what can be called a stoneage diet....followed by controlled oral challenges if need be. And the diet must be nutritionally balanced. My opinion anyway. I really hope you get to the bottom of it!
 
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Discussion Starter · #5 ·
Thanks all for the replys...I went to a new GI today. He is getting all my medical records from the other Doctors I have seen.Gave me some stuff I am suppose to eat to add fiber to my diet....I am going back in 2 weeks to tell him if I have improved....
 

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Hed,I think your fear of cancer is understandable after seeing your mother suffer with it. Many IBSers have that same fear. You know you have these horrible, scary symptoms, and the Drs. tell you it is IBS, go home, and basically live with it. This BB is where you can find out how others have learned to cope and live with their symptoms. Your symptoms certainly sound like they could be IBS, but keep on with the tests until you're sure. AZ
 

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BUMP for Hed and others who are afraid IBS-symptoms could indicate cancer------------------Pepe from Holland sends regards C/D type
 

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Hi fatcat and welcome!
When someone replies to a post, it goes to the top of the list. So if someone 'bumps' a post it's the same as replying and it first. This is especially good if it ended up on the second page where others might have missed it.
 

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I want to welcome you Hed (and yes, I stayed with your story until the end-unfortunately mine is long too). I agree with what Pepe and MikeNoLomotil had to say and the supportive words from AZMom had. I cannot imagine what you have been through with all the cancer experiences in your family. I can imagine your symptoms, however, as they are very familiar to what I was experiencing. I think it is wise to rule out the cancer or other possibilities first, and unfortunately it might take something as uncomfortable as the colonoscopy to do it. However, if you are given the right meds/amt. to put you out during the procedure, it is not bad at all. I went through a lot of testing and to no other diagnosis than IBS with my GI experience, but it had to be done. It wasn't until I went to an allergist M.D. who was experienced in doing double-blinded sublingual food/chemical testing that I got to the reason why my IBS, which was usually C type, changed to frequent soft-stooling (much like you described). My stools were rather a pale yellow-orange color too (don't know if that sounds familiar), and the cramping and rectal pain were severe. I also had the extreme bloating, gas, abdominal swelling sensation, especially after eating/drinking. I knew something was wrong, but I didn't know what. I went so far in my desperation to have a hysterectomy as they had found endometriosis. I thought that this might help if it was endo on the bowel or something, that it wouldn't continue growing/put out more estrogens making it worse. The acidophilis I was trying around the same time seemed to help. The surgery did not correct the bowel problems though, as all the symptoms came back. The post-surgical follow-up exam approximately six months later found yeast caked to my vaginal wall. I had been on amoxicillin all the while of my symptoms, which a dermatologist prescribed for adult-oncet acne. The Gyno said it had masked the usual drainage and odor one would normally have (although, I knew I felt sore down there). I took myself off the antibiotic then, and unfortunately was only prescribed a local antifungal. It took care of my vaginal yeast problem, but not the bowel infection. After a few miserable years, I finally went to the allergist I spoke about above. The allergist found I was highly allergic to molds, particularily candida, and the food additive citric acid, made from fermented sugars. He put me on an antifungal and a low sugar-no fermented/aged food/beverage diet. I cut out citric acid found in many fruity and tomato products, and coffee naturally. Within a few months, my symptoms gradually disappeared. I have been on and off the diet and med for a year and a half now, and my symptoms return when I am off. The allergist predicts that it will probably take about 3 years before I can do without it. I was on 1 tab twice wkly, and have decreased to one tab every 7 to 10 days. When I start with the extreme gas and soft-stooling, I go back on and it takes care of it within a day. I can't say that this is your problem, but if it sounds familiar and you have exhausted all other testing, it might be worth a shot. It is not well accepted by all M.D.s yet, but I think that the day will come when they begin to recognize it as one. Fungal infections elsewhere in the body may be a clue. The bottom of my foot started peeling/sloughing off dead skin, and quit when I went on the antifungal/diet treatment. You could try refrigerated enteric coated acidophilis and a low sugar diet and see if that is helpful. I wish you the best Hed in figuring out your particular problem and managing your symptoms. God bless. [This message has been edited by moldie (edited 06-13-2000).]
 
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Discussion Starter · #11 ·
Thanks Moldie for the kind words. I am truly sorry to hear of your problems and hope that things continue to improve for you. Finding this board was truly a blessing, but it is depressing as well, to know all these good people suffer as I do or even worse. I won't even get into the messages I read on certain cancer boards, god that was horrible. On the bright side there is a strong sense of community and everyone that has replied has tried to be helpful. I hope all of us find the answers we are searching for.Hed
 
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