I’d Rather Be Crazy than Sick

Introduction:

I’m 33 years old, a graduate student, mother of two beautiful boys, and own my own business. I love to run, camp, canoe and dance. I am not diagnosed yet but I am scheduled with a GI to discuss the symptoms I’ve been having.

My Story:

SORRY TO BE SO GRAPHIC BUT I’M REALLY KINDA SCARED.I’m wondering if I am a hypochondriac or if I am in denial about having UC. I’m 33 and my mother was 33 when she was diagnosed. I have been having nausea for approximately a month. Last week was really bad, I also had stomach cramps so severe that I was bent over with them. I frequently feel like I need to have a BM but then only a small amount comes out. It seems solid, not diarrhea. I did have some mucus a few weeks ago but this was the week before my menstrual cycle so I was hoping that maybe that was the cause but I can’t find anything that supports that this would happen as part of a menstrual cycle.

I am TIRED ALL THE TIME,

no matter how much sleep I get.

But today, I feel ok–still very tired, had some mild nausea this morning that seems to have gone away and a little back pain.I am also having a lot of gas and some burping as well today. I am a graduate student, own my own business, and a mother of two beautiful boys but all of this means that yes, I have a lot of stress in my life. However, I have always seemed to have handled stress before. When I told my doctor how tired I have been, they write it off as being a product of my life. But I know the feeling of tired from taking care of children and with sleep you feel better. I never feel less tired no matter how much sleep I get. The nausea is awful at times, I actually took a pregnancy test because if felt like morning sickness. I am not pregnant. I have an appointment to go see a Gastroenterologist but I don’t really want to go.

I’m worried about many things:

  1. What if I really do have UC–I watched my mother get sicker and sicker and I don’t want to do that to my family but I’m also equally worried that I go to the GI doctor and they tell me I’m fine and then I seem to be acting like a hypochondriac.
  2. I already have a “butt” thing where I am highly embarrassed for anyone to know I’m using the bathroom, I don’t want anyone looking there or touching there and I CERTAINLY DON’T WANT A CAMERA UP THERE

If anyone could tell me if they ever considered if maybe it was just stress or somehow they were making it all up as part of the early diagnosis that would be helpful. Also if anyone thinks I really am making it up in my head and I don’t have ulcerative colitis that would be awesome–I guess I would rather be crazy than sick.

written by Shannon

submitted in the Colitis Venting Area




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13 Responses to I’d Rather Be Crazy than Sick

  1. stephanie April 19, 2012 at 7:18 pm #

    Hi Shannon, sorry to hear about the symptoms. I think it sounds as if your suspicions are correct and we all should trust ourselves to know our own bodies. Yes, I had those type of feelings too. It makes you doubt yourself especially if you get misdiagnosed for some time. No one really wants to hear the diagnosis though, please know that a lot of people can get better and lots of options for treatment. Find a good GI if you don’t already have a good one and start a plan to get better. It is a hard lesson for mothers to learn that they have to take care of themselves first in order to care for others.

    • Shannon April 20, 2012 at 5:39 am #

      Thank you Stephanie. I guess after watching my mother get sick with the disease, I have a worse-case scenario in my head. My mother did not respond to the medications and after about 2 years of increase medication A and decreasing medication B and adding Medication C over and cver again she became deathly ill. My father was driving her to her doctor’s appt. and she kept losing consciousness, so of course they put her in the hospital. Then a week later they transfered her to another hospital for emergency surgery to remove her colon. They had to transfer her by ambulance for the 6 hour drive because they were afraid that life flighting her would kill her (I never knew this was possible until my mother). My mother then flat-lined 3 times during the transport. She does have a near-death experience from that trip. I guess I’m saying all this because I am absolutely terrified about the possibility of my having UC too because I watched all this happen to my mother and I absolutely don’t want my children to see me like that. I was at least a teenager when my mother got sick. My kids are 6 and 2. Also I’m really angry that no one told me there was a genetic component to this. If I had known, I may not have had children, as I certainly don’t want to pass this on to them. It seems so unfair that in my family the disease doesn’t seem to manifest until your 30s and so by then you already had kids that you could potentially pass it on too. My brother is also having symptoms right now but he doesn’t have insurance so he is not going to get them checked out and his symptoms seem even worse than mine, he is seeing blood. I guess I am just having a lot of transition in my life right now and transition is always scary. I am really grateful to have a place where I can vent. I have only been on this site for about a week and everyone here seems so supportive. That is wonderful! I thank you for your reply, it helped me to feel validated. I insisted that my doctor’s office refer me to a GI doctor at the Cleveland Clinic as that’s where my mother went and apparently they invented the j-pouch surgery there. I just have to remind myself that despite my mother’s difficulties that my experience could be very different.

  2. Lara
    Lara April 20, 2012 at 1:13 pm #

    No one really likes having a camera shoved up inside your colon rooting around to see what’s going on. It’s not fun. In fact, my Dad started to notice some blood & so he went to see my GI doctor. He recommended that he get a colonoscopy because I have UC, which I’m sure he loved hearing. Turns out, he had nothing wrong with him. A benign polyp was removed. But that was it. Maybe your situation could be similar…..

    Trust me, I’m also embarassed to use the bathroom with people around…..ESPECIALLY #2. However, all modesty will go straight out the window with UC. I’m also a grad student, and I know they type of stress you’re under, but I think that it will be for the best for you to go see a GI so you can get an answer for your symptoms. That way whatever is bugging you can be treated correctly so you can get some relief.

  3. John April 20, 2012 at 2:58 pm #

    Please go see a doctor, please get a colonoscopy. The earlier they know, the better your chances to get it under control. Your children will see how you deal with your illness, they will emulate you later in life. Take it on like a fighter, kick it’s butt, and show the kids how we fight this nasty disease!

  4. Melissa April 20, 2012 at 4:00 pm #

    Hi Shannon, your symptoms sound similar to mine when I was first diagnosed. I had every test under the sun done while they were trying to figure it out. As much as I didn’t want UC and don’t enjoy it, I’m glad I finally got a diagnosis. I know what to expect now. I’ve been treated with meds and eventually went off of them when I got my diet under very strict control (I had food allergy testing done). Unfortunately, I wasn’t always faithful to that diet, and stress (grad school and teaching full time, plus just life) got to me and I’ve recently had a flair. I go back to get the follow up results next week from my most recent colonoscopy. I have a feeling I’ll be back on meds for a while.

    At any rate, I guess I am trying to let you know that it doesn’t always have to be a horrible disease. If you are diagnosed, you will eventually learn what some of your food triggers are. You and your doc can find the right meds for you. I have been extremely lucky because I have not had the severe flares that others have (although I know it could always happen). If you are diagnosed, you may be lucky that way as well. I can totally understand why you are fearful after watching your mother go through what she has w/ this. However, you may not have the same experience she has had.

    As far as the camera up your butt… don’t even worry about it. You will be knocked out and you don’t even know it has happened when you are done. I was very uneasy at the though of one before I had it done. It is the prep that is the part that is uncomfortable… but hey… we are all used to the toilet by now anyway, right? As far as bathroom trips and having to go at not the best times, it does suck. I never thought I would get used to it. I told my principal about my condition and my close co-workers. At times, they know that I may have to just leave my classroom. If I have time, I call someone to cover for me for a few… if not… I just have to go and that is the way it is. My students may or may not know why I take off sometimes. If they have figured it out… so be it. As the children’s book says, “Everybody Poops”. We are just lucky enough to have to do so more often than most. lol

    Hang in there. See your doc. Ask lots of questions and don’t let them brush you off. If you don’t like the first person you see, go to someone else. It is your health and your body that you need to take care of.

    Let us know how you are doing after the doc!!

    Melissa

  5. OrdinaryWorldWhereRU April 20, 2012 at 5:22 pm #

    Hi,
    Sorry to hear about what you are going through! You may or may not have UC. They aren’t sure there is a genetic component because the percentages just don’t quite bear that out yet. For example, no one else in my entire family, extended and all, have this disease. Just me. On a positive note, everyone is different so everyone responds differently to available treatments and approaches so what does or doesn’t work for one person doesn’t necessarily apply to another. As far as camera up butt, I didn’t feel a thing and we had to get an answer so eh, it is what it is. The prep sucked far more than the actual procedure and its less worse that the oh so fabu annual checkup if you know what I mean. If you at least get an answer, you can make a plan. I hope things go well for you and you don’t have it.

    • PeterNZ April 20, 2012 at 6:56 pm #

      Hi,
      Interesting the genetic thing. Me. 2 sisters and brother got it. Other sister and 2 brothers didn’t.
      Chur

  6. uma April 20, 2012 at 6:38 pm #

    I dont think it is UC. You are just scared because your mom has it. But you must rule it out.Start taking a probiotic. It is not harmful even if you dont have UC.It will kind of protect you with good bacteria since UC runs i your family.Good luck.

  7. Trish April 20, 2012 at 11:58 pm #

    Please see a doctor. I know it’s what everyone else is saying, but there is no other way of finding out what’s really wrong with you. You may or may not have UC, but in any case, there’s no reason to suspect the disease would progress in the same way as your mother’s and – remember – your mother is STILL ALIVE. She did get through it all. The quicker you get this looked at, the better the chances that if you DO have something, you will catch it early and nip it in the bud. However, you could have a stomach ulcer, gallbladder problems, gastroparesis etc – you simply don’t know. You can get burping and stomach cramps with constipation alone, and you can suffer for years with nausea and diahorrhea and it’s nothing more than IBS. Being ashamed about bodily functions is not useful to a patient – when you go into the surgery, try to leave your pride at the door (heck, how I squirmed the first time I saw a TCM practitioner, who went into the exact colour, consistency and smell of my motions – how awfully unBritish). Besides, if you have a colonoscopy, you will be asleep (and if they’re not planning to knock you out, ask them to – they may take the chance to give you an upper GI at the same time). Feel better soon. Trish :)

  8. Shannon April 22, 2012 at 11:22 am #

    Thank you to everyone for their replies. I haven’t heard back from my primary care physician yet about when I am scheduled to see the GI specialist (this is not unusual for my doctor’s office though). Currently, it’s just been more of the same… although has anyone had intestinal burning? It feels like heartburn but it’s not in my chest or stomach, it’s definitely in my intestines. Until I see the GI doctor, I will try not to worry and everyone’s replies here have helped with that. I will keep everyone posted on what happens.

    Thank you all!

    • Adam
      Adam April 22, 2012 at 12:47 pm #

      Hey Shannon, I hope you hear back from the doctors soon about your scheduling. Maybe if you don’t hear from them by Monday afternoon, give em a ring again to see if they have an update.

      As for the intestinal burning, would you say it is somewhat like cramping feelings? Or is it more like the feeling one might have after eating a bunch of spicy peppers and then feeling them come out the next day?

      I’ve definitely had my share of both, but the cramping is often pretty common with UC symptoms and can range from very mild to very severe. When I was experiencing severe cramping several years ago, the only thing I could do when a major cramping session struck was simply ly down wherever I was(bed, floor, bench, whatever…) I hope you get some answers soon Shannon:) take care!

  9. MeAndUC April 26, 2012 at 9:21 am #

    That ‘butt’ thing will go away with some experience in talking to people online about UC…. :-) 4 years ago I would never have thought that.

    You may think about being worried so much but try not to be, a lot of us continue to worried even in remission. Some of it stays I believe.
    Glad to hear you have your own business, many of us don’t and its very hard to go to work dealing with this for somebody.
    A lot of mind games goes on in us. Any negative thinking doesn’t help.

  10. Shannon April 26, 2012 at 9:32 am #

    Hey everyone. Again thank you for the kind replies. As far as Adam’s question whether the burning I described was like eating too many peppers or if it was cramping. The day that I felt it, it was like eating way too many peppers but I hadn’t eaten much all day and certainly not anything spicy. However, I am having the burning today and it is accompanied with crammping. The symptoms seemed to have gotten better over the past few days and so I thought “maybe it was all in my head”. However, today the cramping is back. I’m thinking that maybe it is just IBS though as I am also constipated and I guess there is not a lot of constipation with UC. At this point in time though I am just guessing. My doctor’s office has not called me back and I have left three messages with the nurse’s desk. I think the problem is that I asked to be refered to a GI in Cleveland and they had refered me to a local GI, so they assumed that I had a referral and there was no need to call me back. Of course, with all of this confusion, I ended up missing the appt with the local GI, so now I have to try again. In two weeks I go back in to see my doctor, so I think I will wait until then and talk to her about wanting a referal in Cleveland. If Cleveland tells me nothing is wrong, I would believe them but if the local guy does, I will just think he is lazy and doesn’t want to check. I live in a small town and our hospital does not have a good reputation–if you couldn’t tell that from the lack of my doctor’s office calling me back! I’ll let everyone know how things go–If I ever get any information.

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