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Discussion Starter · #1 ·
6 years ago I had rectal bleeding which was so heavy I couldn't see the bottom of the toilet. My family doctor sent me to a surgeon who speacializes in colon/rectal surgery. He did a colonoscopy which showed hundreds of little ulcers he said were caused by a virus and would go away in a few months. I have had constipation, pain, bleeding since college (am now 47). I again had the same heavy bleeding, a colonoscopy 3 days ago(by the time they did it the bleeding had stopped), a diagnosis of "some" ulcers (no biopsy) and a redundant colin, said I'm fine come back in 5 years. Now I'm running a lowgrade fever, discomfort in my side, and bloody, mucus bowel movements. Doctor said it couldn't be the colonoscopy, I must have a bug, take tylenol. Is this IBD? What type of doctor should I see? Am I overreacting?
 

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I'm new to this board, but I think something is definitely wrong with this picture. I feel worried about you and wonder if you are not getting proper care. I don't know where "horse country" is, but maybe if you post where you live (even just the general area) someone from that area could recommend a good gastroenterologist--the one sort of doctor it seems you have not yet seen. I myself am not crazy about any doctors, but it really seems like you need a good one now.
 

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Discussion Starter · #4 ·
Thank you for your replies. I've been reading up on this and I will see a gastroentrologist. I live in rural Ohio, the doctors here aren't very good. I'm looking for a new family doctor. Mine insists I suffer from "hidden anxiety" and should stop reading medical books and just take anti-depresants. I tried that, but it didn't stop the problems, just made it so I didn't care so much - about anything. I'm not depressed, I hurt, which limits what I can do and I get frustrated. I do see a rheumatologist I trust who is about 2 1/2 hours away. I have "lupus like syndrome", worse than fibromylegia, not as bad as full blown lupus. (Since this is an automimmune thing, is this a common link among people with IBS?) He's tried me on NSAIDS which make my stomach go nuts, but my joints feel better. I'll ask him about a referral. I never thought to mention my stomach to him, other than the problems with the NSAIDS. I hate putting my family through this, the time, the expense, telling my kids I can't do something because I have one of my belly aches, at times the embarrassement in public. I've wondered if it is in my head, but the ulcers are there, the gas/bloating, the constipation. Maybe this is part of the puzzle. I don't want pity (although the sympathy I sense amongst all of you on this list helps), I want to feel normal, or at least better able to do the things I enjoy. Well, thanks for listening.
 

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barnmomma, got your message but you can always email me at FPhyllis4###aol.com if you want. FYI, the doctor I used in Cincinnati, was Dr. Vinayak Kulkarni and his number is (513) 936-8700. I think he is one of the best and most caring gastro docs I have ever met and used. If I lived in that area (I got to him thru family and friends with high recomendations), you can be sure I would use him. If you need further info, mail me direct. Good luck. Phyllis
 

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Hi Barnmmma!I am no doctor, but your symptoms sure sound like IBD. I had very similar symptoms and my GI specialist was not very apt. I went to him for two years and all I got from him was "Well, your pancreas looks good right now!" I would tell him that I was happy about the pancreas, but please check out other possibilities. He continued checking my pancreas (in his defense, I must say that I had a long history of chronic pancreatitis.) Eventually, I couldn't get out of bed, I was very sick. I couldn't eat (I sometimes went for up to 3 weeks only sipping water.) Towards the end of a 2 year battle with these awful symptoms, I lost 70 pounds in the last three months of suffering. My husband (Mr. Grumpy Pants, Jim) was so mad he demanded from our insurance (an HMO ... Kaiser) that they get me a new GI. Within 2 weeks with the new GI, I was scoped, diagnosed and began treatment. I was so sick, he sent me to the colon/rectal surgeon. Within a month, I had a diversionary surgery to divert my colon away from my rectum. My rectum had been so attacked by this Crohn's Disease, that it was useless. The sphincter was no longer working so I had to use Depends. I was stuck in bed and at home unless I was going to the doctor. That was my only reason to be out of bed. I was either sleeping or on the toilet. That was my life. I eventually had to have a proctectomy ... the rectum had to be removed. I now wear a colostomy bag. It is permanent. The reason I go into all of this detail is this: If I had been diagnosed and treated earlier, I believe I would still have my rectum. If your doctor is not diagnosing you ... go see a different one. You have that right! I do not feel bad about having the colostomy bag, it has been a very good "friend" to me! It has allowed me to get up and out and I have some of my old life back (so thank you Lord!) If you can, please see a GI at an IBD center that specializes in IBD patients. They are great!
 

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ok... I disagree. I don't think it could possible be IBD, there's no possible way that you could have IBD for THAT long and not know it... if someone had untreated IBD for that long they would've bled to death, lost massive amount of weight, become really dehydrated, or most likely had their intestines perforate. Basically... IBD can't go untreated for that long without getting so bad you'd be dead by now. I do think you should push for more answers to figure out what this is- but I don't think it could be IBD.Kate
 

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Wow Katie, is that really true? If it is, I feel a whole lot better because in all my one year with these horrible symptoms, I would've lost weight right? So I must have something other than IBD, at least THATS reassuring. But on the other hand I'm 13 and I probably have a hiatal hernia. A really severe one. Oh, my luck. Do you have email or MSN I'd love to chat!!!
 

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Discussion Starter · #10 ·
The surgeon told me he didn't do any biopsies this time because I don't have many ulcers and they are so small. He said the bleeding is probably from large hemerroids (he didn't tell me that until after I made my post, it would have made me feel better). He did biopsy the ulcers the first time, when I had a lot of them, but said the biospies were "fine, no cancer". Meanwhile, I have seen a new family doctor who I quite like. When I told him about the surgeon, he closed his eyes and shook his head. He feels from my symptons, it is likely I have IBD (but now I am getting confused as to whether he said inflammatory bowl disease, or irritable bowl disease. I know they are different, but am unclear about it). I have not been sympton free for the past six years. My problem is ongoing, primarily constipation, but it alternates with diarhea (please forgive my spelling). I also get a lot of gas and bloating, and sometimes hideous stomach aches which double me up. I've learned how to cope, primarily with diet, rest, and walking if I can when the belly aches hit. I can't eat my brother's cooking, though. I don't know what he puts in it. At times I get a lot of mucuous, sometimes with blood in my stool. The bleeding normally is minimal, not as bad as now, but common. When it is acting up, there is a bad, dull ache down my left side into my groin. I'm grateful I'm not as bad as many of you on the list, but it sounds similar to what I am reading. This new doctor has made some dietary suggestions and gave a perscription to try when the belly aches hit. My brother is cooking over the 4th of July, so I'll get it filled before then. His food does taste good. Does IBD have to be as bad as what you have, or are there degrees of it? Regardless, I am getting some pointers from the list I intend to try. I also don't feel so isolated anymore. It wasn't something I felt I could talk about, which I know probably contributed to problems with the doctor. Somehow reading all of these things makes it seem more acceptable to talk about, like there are even answers.
 

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IBD stands for Inflammatory Bowel Disease (Crohn's diease and Ulcerative Colitis are the two diseases grouped as IBD) The are both autoimmune diseases of the digestive tract- the white blood cells attack the health cells in the colon and small intestine, causing inflammation. If you have IBD, the inflammation will be visible on a colonoscopy or, if it's only in the small intestine, a barium swallow x-ray. Symptoms of IBD are bloody diarrhea (not just "attacks" of diarrhea, it is usually consistant every day) low-grade fever, unintentional weightloss, joint pain, ulcers in the mouth, anemia, and sometimes constipation. A blood test will (usually) show an elevated SED rate, low red cell count, elevated white cell count. IBD is a serious disease that WILL kill you if it's left untreated.IBS is Irritable Bowel Syndrome. People with IBS have healthy-looking digestive systems and all tests come back normal. IBS is the diagnosis given for anyone who consistantly had diarrhea, constipation, gas, bloating, and/or pain consistantly, but they can't find a medical explaination. Some people's IBS can be controlled/helped by diet changes, relaxation and stress relief, antidepressants, prescription or over-the-counter drugs... but no one really knows what causes it... but there are probably lots of different reasons.I hope this helps.Kate
 

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Discussion Starter · #12 ·
Thank you, Kate. I have "lupus like syndrome" another autoimmune disease which overlaps with a lot of the sypmptoms you are describing which is probably why I've empathized with a lot of the posts. However, it's probably IBS as my digestive track just isn't as bad as you describe for it to be IBD. I'll try to get my terms straight and clarify this with the new dr.. Even so, I appreciate having heard everyone else's tales of woe (makes me realize I'm not so bad as I thought), suggestions, and words of support (I'm not alone). Next time I think I'll have a gastroentrologist do the colonoscopy, though. I'm also going to use a different prep (yuck).
 
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