When Buttpee Ruined My Life

Introduction:

I was diagnosed in April 2009 while stationed in England. I am from sunny California but currently reside in Washington. I am 31 years old with twin boys that will be 10 this Christmas and they pretty much fill up my free time. After 10 years in the military my UC got me medically retired and now I am a professional student.

My Symptoms:

I am currently in a flare, trying to get over it. I was hospitalized just this last weekend due to the horrible dehydration. I finally got my potassium levels back in normal range and am now just experiencing mild bubble gut, bloating and some diarrhea (or buttpee as we say in my house).

buttpee and colitis

My Story:

So, lets start from the beginning… I have always had shy bowels. I have never been able to #2 in public. After a 6 month deployment in Kuwait where I never had an ounce of privacy I returned to England where I was stationed with the US Air Force and I had buttpee for about 6 weeks before the bleeding started. My military doctors told me I was being a baby and I needed to go back to work becasue it was good for me. I cried in the Dr’s office because I was in so much pain, it hurt to put pants on let alone sit upright at a desk for 8 hours a day. I was so exhausted from the dehydration I would have to take naps on my way home from the Dr (which due to where I was stationed my Dr was an hour away). My boss didn’t understand, he thought I was being a baby and the medical people kept telling me it was a parasite. They were pumping me full of Flagyl and Cipro and Immodium and nothing was helping, in fact I felt like this was all making i t worse. After 3 weeks of bloody buttpee I was at a point where I was eating handfuls of frosted mini wheats just for the sugar high to stay awake. At this point I was finally sent to a British emergency room.

The British doctors admitted me immediately after seeing my stool sample, they knew something was not right (did I mention I had already given about 3 samples to the military doctors). I was told the reason I felt like I constantly had the flu was becasue my white blood cell count was off the charts and my body thought it was fighting an infection but it was really an inflammation of my intestines. When I was first admitted I was placed on a hospital ward with about 9 other women and a Dr came in to do a rigid sigmoidoscopy and it was humiliating. Every other woman in that room heard the blood come pouring out of my butt as soon as they stuck the thing up there. It was at this point that they said geez lets hurry up and get the insurance processed and get her into a private room. I was admitted on a Friday so I was not seen again by a Dr until Monday and my appointed GI was Dr Payne (yeah funny right). Dr Payne was a surgeon and he wanted to cut. He said he was going to pump me full of steroids and other things but if it didn’t start to work he was going to do surgery. I think at this point I had a mental breakdown. I was 28 years old, in a foreign country, alone, and I was about to end up with a poo bag. So much for military friends, as a single parent of two kids it was really hard to find reliable friends to help with my kids so this stress did not help my situation. My First Sergeant ending up helping me more than anyone, he took my boys and he and his family took care of them for the two weeks I was in the hospital. After 2 weeks of IV steroids and antibiotics as well as a colonoscopy they said I could go home. At this point my mom flew out to help me. Little did she know that the day after her arrival I would end up back in the hospital. I was sent back to the hospital because the bleeding had started again and they felt I needed more IV steroids. I was sent to the private hospital that Dr Payne worked at exclusively. After 6 days of IV steroids he did another colonoscopy and said I could go home and he sent me with a hefty prescription of prednisone, asacol and azathioprine. At one point I was taking 46 pills a day. It is unfortunate that I didn’t think to ask for a second opinion sooner… I was on the steroids for 6 months, it was taking forver to ween off. I had every side effect you could imagine. I had moon face so bad I could not move my neck at all or move my head very well… I looked like a say not to steroids ad campaign. I had buffalo hump, I gained 80 pounds (yeah after I busted my butt in Kuwait to get back to my pre-pregnancy weight I had now balloned up to 220#),I had rage, and severe insomnia… I could not vacuum my house enough or I would be rearranging furniture all night. I finally thought hey I need a second opinion, because these drugs are stupid.

I got the approval to see a new Dr… Dr Travis, he seemed a lot nicer and had been published on studies of UC, I felt like I was in good hands. Right away he weened me off the steroids and stopped the asacol, he wanted to do remicade treatments. He did his own rigid sigmoidoscopy in his office and scheduled me for a colonoscopy (so now I am at 2 rigid sigi’s and 3 scopes in a matter of months). We did 2 remicade treatments but I had such a weakened immune system that I was getting upper respiratory infections so we stopped and I was just on the azathioprine (250mg daily). I was finally starting to feel like me again…aside from being tired all the time (which they told me was because I was now anemic). After 6months off of work I was sent back on half days. After a few months of half days with a couple bad days where I just couldn’t go to work, I was place on a temporary disability retirement list and sent back to the US so I could “receive the medical care I needed.” It was the military’s way of saying your healthcare is costing too much out here so we are sending you home. This temporary list thing can last anywhere from 18 months to 5 years. Its funny they sent me home to get care but no one told me what was going on, was I still allowed to see sucky military doctors or was I supposed to get into the VA system… I had no clue. So I was home by the end of Feb 2010 and finally seen by a VA Dr (not a GI) in June, this was just the initial appointment to go over my ailments to get me into the VA system. I ended up buying a house in Henderson NV and finally gettign to see a GI Dr by May 2011. I had just been on the azathioprine and living life as normally as I could. Of course he wanted to do his own colonoscopy so I had that done the end of May 2011 (now at 4 scopes, 2 rigid sigi’s in a 2 year time frame). He kept me on the azathioprine until November 2011. I was not happy with his decision to take me off of it a s sometimes the VA can be a little on the slow side with getting the refills to you and I had a two week period where I went without meds. My symptoms started to arise so he ran some blood tests and determined that I was either not taking the meds as prescribed or my body was metabolizing they so quickly they weren’t doing what they were supposed to (I told him about the two week gap in meds but I don’t think he was listening). He started me on canasa suppositories on an as needed basis. I felt like, if my metabolism was THAT high then why couldn’t I burn off this steroid weight, why am I still taking naps in the middle of the day and why do I still have a small buff hump???

I have just recently (June 2012) moved to Washington. All the stress of the move and getting renters in my house back in Henderson has caused me to flare. I barely enrolled with a new Dr out here and got a referral to a new GI when I had to call to make my initial GI Appointment I also had to tell them I was beginning to flare. They said well we don’t have any appointments unti lOctober, but we will squeeze you in the end of August in the meantime we will send you some new meds. Well, their meds arrived Saturday and I was admitted to the hospital Friday night. I just spent the weekend in the hospital being pumped full of antibiotics (for some reason the Dr doesn’t believe I have UC and thinks I have C. Diff) and fluids because I was severely dehydrated and my potassium was below normal and a heafty dose of steroids. I was seen by the on call GI on Saturday and he said no more steroids have some rowasa instead. I was able to keep the rowasa in my body and let the med start working so they sent me home Sunday. Went in Monday to my regular Dr and she gave me a burst pack of steroids (I constantly argue with Dr’s I do not want to be on the steroids, its the drug I love to hate… it does what I need it to do right away but the side effects are horrid). I am on day 2 of steroids and I want to rearrange the furniture in my house :/ at least the rowasa seems to be working, no more fresh blood and no more waking up in the night to poo so hopefully I will be me again shortly.

My kids are always scared when they see me sick… I hate looking so weak in front of them, especially since I am all they really have. My best friend was ready to fly out here to give me blood if I needed it. I truly have a great support system, they are just scattered all over different states. At least I have a great boyfriend who is very supportive and helpful and wants nothing more for me to be happy and healthy.

Hopefully the new GI won’t want to do a scope if I can get the notes from my previous GI…. I feel like I have been poked up my butt more than anyone ever should be!

Where I’d like to be in 1 year:

In one year… I would liek to be in remission since I have yet to make it to that point, and I would really love to lose the rest of this steroid weight and maybe even able to tolerate a social drink every now and then without haveing to rush to the toilet.

Colitis medications:

steroids (the drug we love to hate) I feel that its a quick fix to the inflammation but thats it.
asacol did not work for me
azathioprine kept my immune system from going into overdrive and I felt was really keeping my body in check
canasa suppository after a few days in a row I get really sharp pains in my stomach
rowasa only on day 2 but seems to be holding up well

written by Jennifer

submitted in the colitis venting area




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11 Responses to When Buttpee Ruined My Life

  1. Adam
    Adam August 26, 2012 at 8:52 am #

    Hey Jennifer,

    It’s really tough reading and posting up stories like yours, especially to learn that doctors and others in the medical world feel like you’re being a baby with your bleeding symptoms…?

    I know you’re not the first to write your story from the military background on this site with that type of experience so don’t feel alone.

    I wish you well with your current medical treatment program, and definitely realize that almost everyone gets rid of the prednisone weight once the medications are over and some time has gone by.
    Best of luck and keep us posted:)

    -Adam

  2. Rachel August 26, 2012 at 10:00 am #

    Hey Jennifer,
    Read your story, I really feel for you. Just remember you are not alone!!!!! Good luck with everything!!!
    -fellow sufferer

  3. joanna August 26, 2012 at 2:33 pm #

    oh my goodness, jennifer! i also hate reading about things like this happening to UCer’s but it’s all too common. prednisone is given out like candy and i also experienced a hellish buffet of side effects. i gained 40 lbs in two days (all water) and couldn’t walk, bathe myself, or lift myself up to use the bathroom (and i was going 20x a day). i ended up having to use a walker for months due to the neuropathy the prednisone caused in my feet. just a horrible drug that did not do any good for me.

    so you are off the imuran and doing rowasa and pred right now? i wonder why your doc took you off imuran if you were doing well on it. i am on 6mp right now but don’t know if it’s doing anything. i don’t think it is.

    i really hope you can get in a decent relationship with your new gi. it’s really tough to find a good one anymore that isn’t a total jerk and arrogant. that’s what all of mine have been so far (and my current one is, too). i mostly just make appointments with his nurse so i can avoid him!

    it’s great you have your boyfriend and family to support you. i’m sure your kids are scared but know that you are fighting hard to get well. i hate having my family see me so sick but at least we have people that are there for us!

    sending healing vibes your way! you’re gonna get better!

  4. Paul Willoughby August 26, 2012 at 2:33 pm #

    Wow, you have had it tough. Hang in there and thanks for sharing your story.

    Paul

  5. Bev August 26, 2012 at 3:16 pm #

    Hi Jennifer…

    Yet another unbelievably horrible UC saga. I almost cannot fathom that this keeps on happening. This gamut of drugs, and for what? This one isn’t working…let’s try that one. Oh, that one isn’t working anymore…let’s try this other one.

    Does nobody see the problems here? Steve, I know that you do. I am so very tired of hearing about people being put through all of this…their poor bodies. It makes me so sad that I want to cry.

    Jennifer…you are definitely on what I call, the drug ‘merry-go-round’. You haven’t felt well since you’ve been on them, evidently. It tells me that your body does not respond to drugs. Steroids are not the answer, either.

    It cannot hurt you to try a good probiotic while you are trying all of these harmful, useless drugs. You must try it for at lease two months before you decide they don’t work either. Give them a real chance to help. I swear on my mother that I am in complete remission, and also drug free, and it all started when I got so frustrated, angry, and sad that the asacol wasn’t working, that I would give probiotics a try. When my GI said I should go on steroids and imuran, and remicade…I said no way. I took the probiotics and within two months, felt so much better, that I bravely went off the asacol for good. I’m not a doctor, just a longtime patient, who became very dissatisfied with the treatments for UC. I am not telling anyone to go off of their meds…but…if they are doing nothing, and you feel like a human being again on the probiotics…well…I’m just thinking out loud!

    Cheers…I promise you that things will improve. They ALWAYS do. Never forget that you have power, too. You are not at the mercy of doctors and medicine. You can try something that is absolutely SAFE for yourself. It is YOUR body!

    Bev:)

  6. UCinNYC
    UCinNYC August 26, 2012 at 3:23 pm #

    Jennifer, I am so sorry to hear about everything you’ve gone through. I totally know what you mean about steroids. I was feeling suicidal when I was at my highest dose of Prednisone! I feel your pain re. the multiple colonoscopies….I just had my second one in a month because my first doc didn’t know what she was doing. Sorry you’ve had to go through that as well.

    I’m glad you have a supportive boyfriend at least. Having a supportive partner makes all the difference.

    I wish you the best of luck in getting into remission!

  7. Jennifer August 26, 2012 at 4:25 pm #

    Wow, thanks for all the support guys! Just an update… Still in the midst of this flare, got put back on the steroids at 40mg a day on Tuesday. It’s still not really any better. Took it upon myself to take a dose of imuran yesterday and today and I was able to keep some food in my body for about 17 hours which was really exciting. After that the poop-gates were open so I am pretty disappointed. Almost had the help I’ve fallen in the shower moment, too much too fast I guess and all I was doing was trying to wash my hair (it had been 3 days so it was time) my legs were so shaky I thought I was going to fall, and my breathing was really labored so I was getting dizzy. Had to get out and lie down and now I’m just pooped (literally!). Hopefully my GI appointment on Wednesday goes well.

    I will say the military & VA system is crap. I called my VA doc Friday at 0800 when they opened to tell them I need labs done, you know the usual liver & kidney function, RBC & WBC count and potassium. They called me back 10 minutes before the lab closed to tell me the order was in the system. Oh but if I really feel like its an emergency I can drive myself out to American Lake facility (about 45 mins away) ofthe Seattle VA hospital (about 45 or so mins away the other direction depending on traffic). So here I am weak & fatigued waiting until Monday to drive about 20 mins to my clinic and they still won’t have results until Tuesday. At this point I think I’m so weak and fatigued because I might need a blood transfusion. Pretty scary stuff. I just can’t handle the drive all squished up in the car for that long, my mom keeps telling meto have them come get me by ambulance but I see that as such a waste of government funds (once a logistics planner always a logistics planner).

    So that’s it for now…will let you know what’s going on :) thanks again for your love & support

  8. Steve August 26, 2012 at 7:16 pm #

    Hey Jennifer…I read over your story earlier and had to take a breather before I responded. The crap people have to go through—no pun intended—is disheartening before others will listen. And what bothers me most is those that truly need help ASAP are the ones always stuck without options.

    Two things…a blood transfusion is not all that scary, although I argued against getting one because I hadn’t yet actually passed out or anything…to be honest, until they tested my blood a few times in one night, everything felt perfectly normal. I was fatigued and I’d get winded if I did anything strenuous but once they took that blood, standing up was an adventure and then I needed help. In the end, I got one unit of blood when my doctor wanted to give me two…because a cooler doctor came along and said I was not in need of blood yet and that I could leave if I wanted. lol. As much as I protested it, I cant lie. The extra goodies in the blood boosted my energy for a few weeks.

    And the other….you seem to be going down the path of trying all the medications for UC. Have you ever thought about trying other treatments? You can do as you wish, but as Bev has seen me say many times, if the medications are not helping, why continue to add that stress to your body? I’m not suggesting stopping that without medical help…but I’d bet money on it that part of your problem is the medications. Even though I have yet to meet a doctor who swears by other approaches….there are others people do here and they live UC free. You should look into them…different diets—the raw vegan diet where you eat food the food does the work for your weakened gut, giving you energy to heal while also keeping toxins away from you…or the Specific Carb Diet(SCD) where the principles are different but the premise is the same…you allow the gut to get better by eating the correct foods. Just to name a few other remedies—probiotics, supplements, Chinese medicine, magnets, yoga, meditation, etc. Anything is worth a look at this point if it will give you lasting relief and allow you to raise your kids without the concern of a chronic illness. I just wanted to mention other methods because I think you would benefit from them a great deal, and it seems no one has even suggested those as options to you.

    One quick note…if you do look up other methods and mention one to your doctor, he’ll likely tell you it will never work(and that you’ll need his medicines for the rest of your life or you’ll lose your colon…but A) he doesn’t have UC and B) the medicine he studied involves harsh medications and surgery as means of treatment for illnesses/problems…not the natural powers of the body or how to fix the problem by attacking the problem. They use “band-aids” to cover up the inflammation in your body…they never stop and try to rid the body of that inflammation, because according to them, they have no idea what causes it. Some think there is a mysterious bacteria that sneaks into our bodies and causes a change—it is impossible for bacteria to change us like that. Others say it is genetic—then why did this disease exist in much lower numbers years ago when we ate less processed foods and lived “simpler” lives? All kidding aside, if you really grill a doctor, they’ll admit UC is widely misunderstood. Remember that when they tell you to take another medication…because in all likelihood, their just tossing you something without even thinking of what it is doing to you.

    Thanks for you story and I hope find a way to manage your illness that works for you and your family. Steve

  9. Jessica from Ohio
    Jessica August 27, 2012 at 1:45 pm #

    I am so sorry to hear of all the probing that you went through esp in an open area. Also for all the trips to the hospital and so forth.

    I think all of us UC’ers know what butt pee is! haha, I actually have a case of that today, didnt sleep well last night because I was scared I would wake up in a mess….. thank god that didnt happen. But I do have a protective cover that has battin on it with platic underneath it, so if i still feel like that tonight I might have to break that out of the closet.

    I dont know if you know much about prednisone but just be aware that it can cause some very serious side effects….. I experienced every single mild and severe side effect when I was 40mg, beside like my throat swelling shut & hives. So just be cautious of that esp since you have had so much blood loss.

    I feel so bad for you, I truely hope they can get the bleeding under control….. that is a big thing. Keep us updated on how things go, stay strong even though it is tough. Prayers your way!

    Try some supplements maybe???? Probiotics and garlic supplements …… also if you want to look into bilberry and kava kava. Check with your doctor of coarse and do a drug interaction check to make sure it wont effect with your current medications. I wish you the best of luck

  10. Jennifer August 27, 2012 at 8:50 pm #

    Ugh, what an awful story… I am so sorry you are going through this! I agree with Bev on the probiotics… I was on VSL3 for a a month or so, during which time I couldn’t decrease my prednisone without symptoms popping back up. After 2 months of VSL3 I upped the dosage and voila! Symptoms went away, I tapered off prednisone, and now I’m in remission. Huge believer in combining diet (low fiber, gluten/dairy free, caffeine free, sugar free, etc.) with probiotics (ie. hundreds of Billions of live cultures per day… more than you’d think! Flood your ravaged system with good stuff). Best of luck and keep us posted!

  11. Jennifer August 29, 2012 at 7:01 pm #

    Ok here’s the latest…brace yourselves because it’s a doozie!!

    I am in the hospital (I’m not really surprised). I arrived Monday around noon via ambulance.

    When I went to my primary care Monday morning and had blood drawn my BP was way high (for me, since of course I’m on meds for that) and I told them about how I had gotten dizzy in the shower the day before. They called 911 and sent me to the Seattle VA hospital.

    When we (the AMR EMT guys & I) arrived the ER desk clerk asked why I was there. An EMT said for bloody diarrhea and I said for a UC flare. She proceeded to roll her eyes & say “you came by ambulance for diarrhea!?”. That statement alone has set the tone for this hospital stay. And I thought the British healthcare system was sucky. I had also brought the tubes of blood I’d had drawn, on ice, since I was going from one VA place to another.

    The clerk put me in a room and a nurse came in…to take blood. I expressed to her that my blood isn’t free and I brought you some so use that. Oh well, they can’t use what I brought because apparently they use a different tube color system (bs). They also wanted urine & stool samples. So I gave some blood (5 tubes!) and the other samples and they left an IV in. At about 145 a “dr” came in to talk to me. She was a nurse practitioner and she had a fleece over her scrubs with no ID badge showing so I was already on alert. She proceeded to sit there and tell me my WBC was normal. It was 10 at the time and was 7 the week before and I had been taking immunosuppressants so she argued with me about that as well as the decrease in hemacrit and RBC. She said it was ok. I told her clearly she wasn’t knowledgeable on UC and I wanted to talk to someone else. I asked her to leave and she refused. So I told her to get the F out. She called the VA police on me. I ripped out the IV and hospital tag and was like I don’t need this. The cops came and lectured me yet when the rest of the staff was questioned they said no voices were raised or anything. So I left AMA.

    I went to the patient advocate and he took care of having me re-admitted to the ER and to see a different “dr”. Of course they wanted another stool sample. So I gave more and they finally hooked me up to the IV and started fluids. After a few hours in the ER a real Dr white coat and all came and had me admitted to the hospital.

    Of course they tested for C Diff and it was negative. I was put in a room and on IV fluids round the clock.

    By Tuesday morning they determined I need a blood transfusion. Between fluid bags I was given two units of blood. Went for a CT scan Tuesday night, boy my bowels did not like the barium shake. Still having bloody buttpee. Finally after the CT I was given my first dose of IV steroids.

    Wednesday morning have to have an ultrasound as my liver enzymes are high. Come to find out I have fatty liver from the past steroid use for 6 months and the excess Tylenol use (since Tylenol is all I take for pain). So here I am. Hooked up to my IV typing this on my phone. They are giving me IV steroids every 12 hours hoping for a discharge by Friday…fingers crossed.

    Even thought I was hesitant about the transfusion, my BP was crazy high before they did it I really had to calm down, I’m glad I got it because I do feel better. Also my poo has no fresh blood yay! Just old blood and some clots.

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