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IBS-C vs Chronic Appendicitis: My Story

32808 Views 15 Replies 4 Participants Last post by  Eleanor91
I am writing this in the hopes that my story might help someone else. I was diagnosed with IBS-C in July 2009--against my vehement and repetitive protests. I never felt that this was what was going on, since my symptoms didn't vary with stress and didn't vary with what I ate. I had chronic constipation, intermittent nausea, dry heaving, frequent urination, pelvic pain, and abdominal bloating. My symptoms only improved negligibly with IBS treatments. I tried bentyl, lactulose, ativan, and miralax. I increased my fiber to 25 grams a day and got more exercise. Still only negligible improvement.I had an abdominal CT scan with contrast, gallbladder ultrasound, colonoscopy, and stomach endoscopy, and they all came back normal, as well as about three ER visits that did not find anything either. I kept insisting to my Gastro that I did not have IBS, but he insisted that I did. He felt that I "fit the profile" (i.e. single middle-aged female with history of depression). He ignored the fact that my depression was stable, and dismissed the pelvic pain and dry heaving, which as I understand are not typical IBS symptoms.I gave up on a diagnosis for about 6 months. I was tired of fighting the doctors and being seen as a difficult patient who refused to accept her diagnosis. I did a lot of research online and found that IBS and ovarian cancer have some symptoms in common, so I decided to go to a GYN to try to rule out cancer. My exam was normal. I began to cry when she told me that, as I knew something was wrong. As a measure of kindness, she offered to order a transvaginal ultrasound. I quickly accepted.The ultrasound found what appeared to be a small mass-like structure in my fallopian tube. She said it did not look cancerous, and the usual treatment was to watch and wait. However, since I was so miserable, she offered to do laparoscopic surgery to remove the tube. I said yes. She said she didn't believe that was what was causing my symptoms, but she was willing to do the surgery anyway. She repeatedly prepared me for the possibility that they might find nothing. I was willing to take the risk of unnecessary surgery, as I felt so bad I felt I had nothing to lose.Last Friday, 1/8/10, I had surgery. It turned out that the small mass-like thing that appeared (wrongly) to be in my fallopian tube on the ultrasound, was actually the tip of my inflamed and infected appendix. My appendix was removed and found to be infected with pus. Apparently, I had an atypical presentation of chronic appendicitis. It didn't show up on the ER blood tests for acute appendicitis because apparently it was waxing and waning, and just wasn't severe enough on the day(s) when it was tested.I don't want to panic everyone into thinking that they have appendicitis. But, on the other hand, if the diagnosis you're been given just doesn't make sense to you, and the prescribed treatment isn't working, you might not want to give up looking for another answer because you just might be right!
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Thanks for sharing your story. Did you ever have an elevated white blood cell count?
No. Weird, huh?Well, let me take that back. I know a few times over the past few years when I had blood tests for something else, I had an elevated WBC. However, it wasn't at the same time as the abdominal symptoms. Docs at the time just said 'you're probably fighting some infection or something.' Could have been the appendix, though maybe not, since I don't recall ab symptoms at the time.
Yeah there is usually an elevated WBC along the way and not necessarily when you have ab symptoms. So people! Anytime one has an unexplained elevated WBC.. more than once... and you have the symptoms.....ask about chronic appendicitis.
Uh, not so quick!
Dry heaves, constipation, and other symptoms before the operation have returned 10 days post-op. Well, here's to a few blissfully happy days when I thought I was going to feel better!Meanwhile pursuing referral to a new gastro due to insurance change.
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Oh I am sorry to hear that Onthebit. Well see how it goes. I am sure that having a bad appendix out could make things a bit better than before anyway. But give your body a chance to heal & recover. BTW did they put you on any antibiotics after the surgery?? Perhaps the bacterial balance in there is off... You could try a probiotic and see if that helps.For the nausea..I found ginger tea and, even better, Ginger Capsules work wonders. So you might want to give that a try.You might want to use something again daily for the constipation at least til you get into the new Dr. so you can avoid any impaction issues. And at the end of the day....It still could be just IBS as not all IBS'ers see a difference in their symptoms with stress or foods. But see what the new Dr says.Hope you feel better.
Thanks, BQ. I was given antibiotics before & after the surgery. After the surgery they were given by IV when I was in the recovery area. This is another reason why my MD doesn't think I have an infection. I will say, though, that she gave me two weeks of two strong antibiotics before the surgery, and my appendix was still inflamed enough to take out during the surgery.Yes, I'm going to have to go back on Miralax daily. Yesterday I also took a docusate sodium because the Miralax didn't seem to do the job enough. Thanks for the info re: ginger tea. I'll think about trying it--ginger tends to give me heartburn. Maybe I will try it in capsule form. Who knows anymore. I need to do my best to stay positive and hopeful. I find that really challenging when I feel chronically ill. I know there are more serious and life threatening illnesses that make people chronically ill and many of those people cope incredibly well, so I try to use that as my inspiration and will try not to let this interfere with my life too much. But it ain't easy.
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Yes Lately I have been having more trouble with heartburn too and I have switched to use the Ginger Capsules rather than the tea.And I agree staying positive is an excellent strategy for dealing with this and probably any chronic illness. It isn't easy.. no. But it can be done. And symptom management of IBS can also be accomplished with some trial & error. Most folks find a combination of various treatment methods working in concert in the best way to reach symptom management with IBS. See what your new GI thinks and then keep us posted!
I will. Thanks for your support! It means a lot to know I'm not alone.
Onthebit, I really hope you are still active on this forum. My symptoms are similar and I feel that I am being palmed off by doctors. Chronic constipation came basically out of nowhere whilst I was traveling. Have had faecal test, CT scan with contrast, blood tests that all have showed nothing. I am on the waiting list for colonoscopy though my Gastro and GP think it will show nothing. My constipation is horrible, nothing really works. Fiber generally makes symptoms worse and I need to take an excessive amount of laxatives for any kind of relief. Pain is rare but sometimes get a very dull ache in lower right side of abdomen. It feels as if my bowels simply don't want to work, there is basically no urge. Sometimes after coffee in the morning, I feel my bowels start trying to work and it is painful. Generally around my lower right side. Before the chronic constipation started I had severe pain in my lower right side one day which I took painkillers for and the pain subsided, but my bowels from then on decided they didn't want to work anymore. I'd had this type of pain on and off again earlier that year (last year, 2014) and I had an internal ultrasound to see of anything could be found. Test came back negative, but this was now a year ago and I have had chronic constipation for about 7 months now. I have nausea and sometimes vomit in the morning but this only happens when I haven't emptied my bowels with laxatives in a week or so. I am a 24 year old female and have had terrible period pain my whole life which is completely debilitating but doctors tell me it's just part of being female, now I'm starting to wonder whether my female problems are related to the chronic constipation. My mother died early of small bowel cancer/ovarian cancer but doctors are unsure of what came first, I'm wondering if this is related to my symtpoms. My Gastro suspects I have chronic idiopathic slow transit constipation though no official tests have been done to diagnose this. As the constipation was sudden onset and severe, and now chronic, I refuse to believe it is simply IBS and believe there is an underlying cause. How quickly did your chronic constipation come on? Any advice would be appreciated at this stage. I'm at a loss as to what to do right now, I'm sick of arguing with doctors. I always end up crying and feeling weak after an appointment as I feel they think what I'm going through isn't serious but it's affecting my quality of life massively, I never stop thinking about it and always feel unwell. Plus watching my mother die early to cancer, I don't want that to be but can't do anything without my GPs help.
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I am so sorry to hear you're going thru this!!!

In my case, it turned out to be that my gallbladder had stopped working. I had a hida scan which found that out. It was a bit atypical GB presentation but it sure sounds similar to what you're going thru.

My symptoms completely resolved after my GB was removed 3 mos after my appy!!! I had a doc who listened to me and was a great diagnostician.

Don't let them pooh-pooh your symptoms. Helps to bring a friend with u, they treat u better.
Onthebit, thank you so much for your reply. It helps so much to know there are a people out there that have struggled in the same way as me! I have never met anyone that has experienced anything like what I'm going through before :(

Very interesting that it turned out to be your gallbladder. My mother had her gallbladder removed and so did my aunty. I actually questioned my aunty about this the other week and whether this could be my problem but she told me I would know if it was my gallbladder as my stool would be white, which its not.

Did your doctor explain to you how the gallbladder caused chronic constipation? I didn't know it could.

Thanks for the tip on bringing a friend, I think I will next time :)
Hey Eleanor91,

I am 26 and have being struggling with chronic constipation for 3 years now. I never had the quickest moving bowel growing up (1-2 times a week) but I did go on my own. Like you, 3 years ago, my bowels stopped working completely. The amount of water or fiber makes no difference; I never ever get the urge unless I pump myself full of laxatives (and half the time that doesn't even work). My whole life I was lactose intolerant and every time I ate dairy I would be running to the bathroom with diarrhea but ever since I stopped having bms on my own I never once again had any urge to go to the bathroom after eating dairy.

I feel like my doctors just brush me off as well. I've had a colonocospy and endoscopy that came back clear. They just keep prescribing me medicine I tell them doesn't work :(

I'm very sorry to hear about your mom. I hope you find a doctor who will help you find out what's wrong.
Hi Rosie!

You poor thing, that's terrible to hear. Unfortunately, I think with most doctors, if they don't know that the cause is or how to fix it, its often easier to assume the patient is a hypercondriac. Horrible about the lactose too, I LOVE milk, cheese and butter and have recently tried cutting them out of my diet to see if it helps, which it doesn't really so I am continuing to eat in small amounts.

I have never had any food allergies, rarely have bloating, always had a BM at least twice a day - now nothing at all. And yes, I am scared as I watched my mother die a horrible death at a very young age due to cancer - really hope the doctors are not overlooking something sinister, but hope there is nothing sinister to worry about at all to be honest!

Will see how I go with colonoscopy - hopefully sheds some light on situation :)
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No the doctor didn't explain how. I also remember having nausea. Mine was mostly in the morning. My life revolved around trying to go to the bathroom. It was a miserable time. I hear you about quality of life!

No there are different presentations for GB issues, not only white poop, which I didn't have. The symptoms are different if it's due to stones (more acute, vomiting etc) vs just not working, like mine. If you are heavy, that is a risk factor for GB disease (my doctor said the 4 F's of GB disease: Fat, Forty, and I forget what the other two were...those are all risk factors).

I feel that IBS is such a throwaway diagnosis. I was furious at my doctors at the time that they kept diagnosing me with it, as I knew that wasn't what it was. They really need to check everything out completely first, and then, maybe that's what it really is. Reminds me about how the medical establishment used to treat "hysterical" women.

Anyway enough out of my opinionated self! The main thing to remember is, there is always hope. It just feels so hopeless when you're in it.
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I totally know what you mean about going to the bathroom ruling your life. Its all I ever think about! I do get nausea in the morning but only when I haven't emptied my bowels out with laxatives in a while. My aunty told me today that in fact her, my other aunty and my mother had their gallbladders removed... definitely think I should look into this now! Cant thank you enough for bringing your situation to light, even if it turns out not to be the case with me.

Its definitely infuriating how the doctors wont listen. Especially how they are constantly preaching about early diagnosis and how important it is, yet the reality of it is they don't want to carry out tests and tell you just to accept the pissy diagnosis they've given you. So sad that they were once diagnosing "hysterical" women. Same thing happens today but they tell you its in your head and put you on antidepressants.

Will keep you updated!
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