# IBS-D, agoraphobia, skin problems, depression, ovaries



## Sensitive (Feb 17, 2015)

Sorry for the length of this post, and the fact that a lot of it is pretty gross. I guess that's to be expected though. It helps being able to talk about it, since hardly anyone in my real life knows what's been going on with me. I tell people I have agoraphobia easily, but I never talk about the IBS-D because it's so humiliating. When I thought I had IBD I almost felt relieved because people understand that IBD is a Real Disease. And who knows, maybe I do have IBD and don't know it--I have fevers and occasional blood, but I think the blood is from superficial irritation and the fevers are from something else. I never got a scope done or got any tests at all because I have issues with anyone knowing about that part of my body and hate doctors offices because I don't want to contract C-diff there. Weird, because I actually thought I might have gotten C-diff before I got appendicitis since I worked in a heathcare setting (not by choice, it just paid better than my old job) at the time I started to get the most sick I've ever been.

I was diagnosed with IBS ten years ago without any tests and prescribed an antidepressent which I did not take. I still have not taken it. I have never taken medication for IBS or for mental illness, except of course Immodium when I absolutely must travel. Anyway at the time of diagnosis it wasn't that bad. I had severe pain deep in my pelvis (crying, curled up on the bathroom floor unable to move kind of pain), like ovarian pain I thought, and a lot of mucus but not so much D. I realize now that what I considered a "good" day, most people would consider borderline D. The way I saw it, as long as it wasn't completely liquid and I could leave the house after my two-hour morning routine I was doing ok. Sorry to be gross, but yeah--IBS causes a pretty consistent lowering of standards for what constitutes "normal." This all started shortly after an extremely traumatic experience and I suppose it's possible that going to therapy during those years kept things from getting out of control. I quit therapy because the pain stopped, I got very active riding my bike and dancing and socializing--and I would only flare up when I didn't sleep well or work was stressing me out. Going gluten-free got rid of the mucus and losing fifteen pounds (actually, becoming underweight and anovulatory) stopped the pain and sickness around my cycle. Upon insistence of my family, I got back to a normal weight and the trouble started again. This time it was much worse. During this time I was also going through some issues that reminded me of the traumatic experience years before, and no doubt that contributed. I also started eating bread again, which was probably the worst thing I could have done at the time.

About five years ago, things started to get so bad I ended up in the emergency room twice. The first time there was a long wait, so I decided it was all in my head--after fasting for two days, the pain subsided and the swelling went down. The second time I went to the doctor first, and he ordered a scan which showed a burst appendix and had my appendix removed. This was after two weeks of increasingly severe D, pain and swelling in my stomach that made me look pregnant. There was a slight concern I had Crohn's since my appendix was miraculously not burst when it came out (though it was swollen and apparently the wrong color), but there was something on the low-contrast scan that had alarmed the surgeon enough to do ahead and operate. Who knows if it was really my appendix that was so scary on the scan or some other part of my guts. I didn't go to the follow-up with the gastroenterologist because I hate going to doctors in general. The surgeon also mentioned that my appendix was hard to find, which makes sense since I have a retroverted uterus and those two systems are kind of squished together in my pelvis, which is no doubt part of why I have so much pain.

Anyway, things were better after the surgery for a little while but then started to get bad again especially around my cycle. Predictably severe watery D upon ovulation and the last day of my cycle. Unbearable cramps and low grade fevers. I would think I had intestinal endometriosis except that I'm not a heavy bleeder. I fasted and lost a lot of weight again, which helped the D but only after my body got rid of tons of mucus and pretty bizarre disgusting things. Drank peppermint tea and basically lived off carrot soup for a month. Quit drinking and cut down to a couple of cigarettes a day. I tried the SCD diet for about six months and felt so much better, but I was always worried about getting sick when I left the house. And, predictably, my IBS would flare up when I had to travel--either because I timed my travel improperly around my cycle, I didn't have access to "safe foods" while travelling, or I was just anxious. Now I have to plan so carefully it's embarrassing. I wear protection when I go out even though I've never had an accident--it's the urgency and abrupt onset of sickness that scares the heck out of me. So I developed agoraphobia from one too many omg-where's-the-nearest-bathroom panic attacks out in public. It's sad and I've missed out on about a year and a half of my life because of it. I work from home now and my husband has to do all the shopping.

Now things are just hit or miss. The only thing that helps the pain or stops the D in its tracks is dry red wine with every meal, which I KNOW is counterintuitive and possibly a form of self-medicating the anxiety instead of the IBS--but hey, I'm sure we've all done some crazy things looking for a solution.

The other weird thing is that I have had a rash in the same place for five years--it appeared intially ten years ago when I was first diagnosed but went away when I went on a low-glycemic diet for the first time (or maybe when I was in therapy) but came back, expanded and got horribly itchy and painful when the bad stuff started five years ago. Topical treatments do nothing for it at all, nor does changing my soap, shampoo, detergent, etc. It just doesn't seem to be coming from the outside but from the inside somehow. The first time the rash started to partially clear was when I got out of the hospital following the appendix episode--and I'll never know if that was because I was put on antibiotics before surgery or because I was fasted for over 24 hrs before and after the surgery. Something about the surgery made it go away but it came back within a few days. The only time the rash goes away is when I stay on the SCD diet, eat a lot of garlic and drink a lot of red wine. It's like the harsher I am with my body--onions, garlic, ginger, wine (all natural anti-fungals/anti-microbials)--the more my skin clears. But never fully, of course. Interestingly I almost always know I'm going to flare up when the rash gets very irritated--it's like the two things are connected, but I can't figure out why.

So now I'm trying to figure out what to do--stay on SCD? Go on birth control pills to modulate my cycle so it doesn't trigger sickness? Take those antidepressents I've been avoiding? Go to the gastro doctor finally just to be sure I don't actually have Crohn's or UC or some exotic disease that would cause both a rash and tummy trouble? Go back to therapy and accept that this really is all mental? Just try to cope with the uncertainty and be thankful when I have good days? Argh. This is the most frustrating illness ever.

Thanks for listening.

Good to know I'm not alone.

-S.


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## jaumeb (Sep 1, 2014)

I have been following the SCD for longer than five years and have not recovered. I tried to start again using zucchini, fish and meat for the intro. I am currently taking S. Boulardii.


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