My Body Had Other Plans For Me

My Name is Sabine

Tears are streaming down my Face and I am trembling with emotions of fear and anger as I am typing this.someone with ulcerative colitis
I’ve never have openly discussed my illness the big” UC” openly with anyone except my Husband of 20 years and my Doctors.
Am I alone in feeling ashamed and embarrassed?  I have spent 6 years quietly screaming on the inside.

My Ulcerative Colitis Experience:

I have been in this dysfunctional relationship with my Colon for the past 6 years.  I’ve always been a health-nut.  Jogging , yoga and weight lifting, a full on veggie-head.   Nothing was going in to my stomach that was not preservative free, organic, and Hormone, and gluten-free. This diet may sound familiar….yes I was actually on a form of the SCD and a NON-smoker.

To make a long story short, I like others fell ill after a Trip ,for me ,to the Caribbean, we were going on 2-3 trips per year.  At first I figured it was the terrible travelers sickness,except it just would not stop ,until one morning a was passing blood.  I was put on 2 types of Antibiotics, and a liquid diet for 2 weeks, my symptoms vanished i went on with life a normal fast forward 5 years, I am in the best shape of my life turning 40 , and one day at work i am experiencing the most severe stomach-pain to the point of almost passing out,after collecting myself and dragging my self to the washroom I had a bowel movement of at least 3cups of pure blood rushing out of me.

I was so scarred I was sure I was going to Die right there.
I was put through another round of medications , and a sigmoid scope the following day, and was diagnosed with mild proctitis.  I was send to a GI specialist, he unfortunately was in the biz for all the wrong reasons , he basically told me to suck it up spending the next 4 weeks in Bed crying in pain being only on Antibiotics, and my symptoms were getting worse , even water would be to painful to take in,i finally broke down and had my Husband take me to the Hospital.
By then I was down to 105 pounds at 5’7 and completely run down . i never seen my Husband so frightened.  My luck ,my horrible Gi Doc was the one on call, he basicallyy told my Husband to take me home and make me eat something it was all in my head, i was only scarred of the blood and making it bigger then it is.  My Husband knows me to be far from that type of personality.

My Husband insisted that I get admitted and refused to take me home, just as the Nurse was getting ready to put in the IV I had a Seizure, and then a Stroke
thank Good my Husband stood up for me ,things could have turned out quit different for me, I had every test under sun,and was prepped for a Colonoscopy, when my GI Doc came to give me the results, he was pale and somewhat worried what choice words my Husband may have for him.
Well I was diagnosed wit Pan colitis not an inch left of my colon not chewed up by UC.  My bloodwork came back, and the Nurse asked me how i had the strength to even sit up, i had 3 Blodd transfusions and a massive Sterroid attack on my Body , i left the Hospital 3 weeks later wearing my Husbands Sweatpants because i gained 60 pounds,i could not sitt up straight because of all the fluid build up in my Trunk,i felt like a Kilbassa ready to bust LOL
i could not believe the image in the mirror,i had gone from Fittness model shape and ripped Abs,to feeling like 90 in a short period of time.

I felt like my Body betrayed me.

I have lost the 60 pounds.   I have recoverd completley from that nasty Stroke.  I do have a severe case of UC.  I am in worse shape in the Winter for some reason. My Doc is constantly trying to Bully me into Surgery, but I am not there yet . I have been back in the hospital a couple more times over the years, i need Blood transfusions at least once a year, and i am on Iron infusions. whenn i take higher doses of Sterroids during a flairup, i will take a Forusomide Water pill every other day, it keeps the watergain down.i am on Pension i had to quitt my job, it is hard when you need the restroom every 30 min, and i am up all night.

I have cravings for food I never was eating before, and can’t stand to look at stuff I loved.  I noticed I have a sweet tooth I never had before.
Some days I feel always hungry, and some I’m to nausiated to eat, enybody else have that?

Has anyone else had the problem with Hairloss after high doses of prednisone?

I have come across a study from the University of Toronto, taking 4x the recommended dose of Folic acid per day greatly reduced the occurrence of colon cancer caused by Ulcerative Colitis. As well as 600mg of coated aspirin per day cut the risk by 60 percent.
I send of you out there my warmest regards, and hope that all of you find the strength every day to demand your inner Courage to come out to play.


My Colitis Medications:

i am on 30 mg of prednisone tapering
iron infusion 1 per week for 2 more session then 1 per month
I tried Imuran , made me sick
I tried Asacol , bleeding got worse

have not tried Remicade (just to worried about the side effects, and it seems to loose effect anyway)


Submitted by “Not Done Yet” aka Sabine, in the Colitis Venting Area


9 thoughts on “My Body Had Other Plans For Me”

  1. Good grief! I hope your husband gave your GI the what for! What an awful experience. Have you a different Gastroenterologist now?

  2. I’m sorry you are having such a rough way to go. My advise, find a new GI that you are comfortable with. Even if it takes 100 different ones. I just switched GI’s and am very pleased with him so far. It is scary when you know some one and they know you. You become complacant. And yes, I was loosing my hair too when I was on a higher dose of prednison. I was at 40 mg. And am tapering down. I’m at 20 mg now. Good luck in what ever option you choose next. I am on predinose, Pentasa, probiotica, and just started Imuran a week ago ( so far so good). Remicaid will be my next step. I have heard great things about it. Some side effects are very scary, but the good out ways the bad. Good luck and keep a positive attitude!

  3. Hey! sorry to hear you’ve been having a rough time! :/
    the hairloss thing, I can totally relate, I also got massive hair loss after being on 60mg of hydrocortisone, then changed onto 40mg of Prendisone, but the hairloss continued!

    I’m still losing hair, just not as much, and I dont look like i’ve just been through chemo anymore, and I’m currently on 5mg of prednisone (for the next 2 days anyway, then i’m finished! :D)

    Also, I noticed that Iron and Prednisone are your only 2 medications you’re currently on, with Pancolitis that kinda worrys me :/ I know that Asacol made you worse, and imuran made you sick, so I’m gonna suggest you try one of the natural remedies, it might give you some sort of relief! I’m currently taking Omega 3,6 + 9, aloe vera and Magnesium, since I started I haven’t been having hard/formed bm’s anymore, but I have noticed that the bleeding has reduced significantly, where everything else failed! I’m also currently taking 3000mg of Oral Mesalazine (salofalk) but I really dont think it’s doing anything anymore.

    as for remicade, the side effects are petty much the exact same as the side effects possible while taking Imuran or 6-MP, except the benefits can be far greater! Remicade (Infliximab) is a Beta Blocker which blocks TNF Alfa, which can cause inflammation, where as imuran supresses your entire immune system, which can leave you more open to illness. Granted, Remicade can leave you more open to illness too, but not as much as Immunosuppressants.
    Both have a risk of developing cancers such as lymphomatic cancer, but they don’t greatly increase your risk of cancer where as with pancolitis, you’re 32 times more likely to get colon cancer! you’re more likely to get cancer from your disease without treatment than you are likely to get it from the treatment!

    I too have severe Pancolitis, so I know it’s a horrible thing to go through, I somtimes wonder does everyone with UC have it this bad! but if you’re doing absolutely nothing but prednisone treatment wise, it’s just gonna get a lot worse! so you should look into Aloe Elite, Serovera, Aloe M.P or Aloefloracel (i think thats the name…) they’re pretty much all the sme thing (A.M.P) and people with Ulcerative Colitis have reported significant benefits with using these products! granted, they’re a bit pricey! (usually ranging from $129-$159 for 1-3 months supply, your first 2 months you’ll use at least 2 bottles!) but if they’ll help you should try it!

    I’ve currently not tried these products though, so I cannot say with much certainty that they’ll work, but they seem to have some good testimonials on their websites, and there is logical science behind it! I’m planning on buying some as soon as I can afford it, and I’ll definately be posting how I got on with it right here!

    I really hope you get out of this rough time you’ve been having, your story sounds all too familier to me! remember that we’re all here for you, you don’t need to suffer in silence!

  4. thanks fellow uc’rs

    there is a lot of new info to consider , i am so greatfull for any response.i feel a sense of peace and freedom
    for the first time since my diagnoses
    Adam you were right, talking about it and having the Courage to not feel embarrassed ,and most of all not to let UC define me.
    i felt for the longest time i lost part my femininity i am getting that part slowly back,i used to wear big layers of clothing and a cap whenn i went out so people could not see how skinny i was.
    i have had some nasty comments stanting in line at the checkout at the grocerie store….”like maby you should eat some of that stuff your buying hahah”
    i did forget to add to my meds i am taking
    a liquid multy called Enerx, as well as potassium and magnesium,and b12 ,b12 was the key to finaly now stop my Hairloss,after i lost 3/4 of it…oh well it is growing back in well i am takin 3000mg of omega 3

    i also dicoverd that greec yogurt slows my bleeding down a lot. have started to make it homemade
    i live in Vancouver Canada, and everything healthy cost a small fortune here.
    i also swiched GI it is a women ,and i am going in for a nother Colonoscopy on November30th, here if you have UC it is repeated every 5 years to watch for Cancer.(oh that prep, her we take Pico salax not magesium citrat for the bowel prep if you have colitis or crohns)

    i wish everyone the best ,in this journy
    Adam thanks so much for your kind e-mail

    warm regards all

    1. I’m glad to hear you changed GI, I didn’t wanna say this, but your GI seemed like a total toolbag!
      As for the olonoscopy, I don’t think that’s a very good idea until your bleeding is under control, because a colonoscopy during an active flare of ulcerative colitis can cause perforation of the bowel.

      Also, Pico Lax should only be taken if you’re NOT in an active flare of ulcerative colitis, as it can cause severe dehydration if you are!

      Pico Lax nearly killed me back in september when I had to do my colonoscopy prep, but I was severely anemic at the time, and didn’t drink nearly enough!

      You should really talk about it with your GI first though, I suppose they can’t really do anything until they know how bad it is, and they can’t find out that without a colonoscopy (I know they have the word of your old GI on how bad it is, but as I said, he sounds like a toolbag, i’m sure your new GI will agree!)

  5. Yikes! Sorry to hear you’re having it so rough…. lots of good advice from others, but just wanted to add, you might check with your doc (perhaps a new one!) if you’re considering taking aspirin. I had the impression aspirin is one of the NSAIDs we’re supposed to stay away from, like ibuprofen, etc.

    BTW, I also started with proctitis that spread to pancolitis at some point. I wasn’t too thrilled with the news either. :-) But it seems, while the flares are trickier to control than they used to be, they can be controlled, and I mostly stay in remission. Your case is more severe than mine, but at least know that just because your whole colon has been chewed in the past doesn’t mean it has to stay chewed. :-)

    Feel better!

  6. Have you considered taking the probiotic Align or VSL#3? Many people find it helps. There is also a supplement called Boswillia, it is an extract from a plant and it has helped many people. Look it up. Some people go into remission by smoking a few cigarettes or by using the nicotine patch. Have you tried Lialda? Wishing you the best of luck!

  7. thanks guys for all the suport and feedback,i am so touched by all your kind words
    i have tried many Natural products over the years, with not much luck.some stuff helps but it is always short lived. the questions about the asperine my Gp has me actually on it because my Platelets are quiet often over 1 million and he is worried about a nother is a chance i have to take ,i usualy take coated once and with food ,when its in my system i can take it only every 3 days. a question for any Females,has Prednisone screwed up your monthley Cycle. i was hospitalized last year for 2 weeks and since then i have not had a period.i wonder if things will go back to normal over time.
    anyone has any sugestion how to controll anxiety that seems to come and go ,i dont want to take a nother prescription Drug.
    the best to all fellow Warriors out there

  8. OrdinaryWorldWhereRU

    I am so sorry to hear about the terrible stress you have been through. I too lost my hair while on high doses of prednisone. Yes, it will mess up your monthly cycle but so can a host of things. It had a list of side effects a mile long. I became quite depressed while I was on it. Also, I don’t know if there are other GI docs that you can go to where you live but it sure sounds like the one you were seeing has got to go. Also, a couple more thoughts. I no longer fear drugs after learning that some of the ‘cures’ out there can get you killed. My doctor put it very well when I had a frank discussion with him about Remicade. He said the real monster in the room is the IBD, not the drugs. I did try a supposed ‘cure’ and it did nearly kill me. The Remicade has been a cake walk compared to the natural ‘cure’ I tried and what it ultimately put me through. I was diagnosed at an older age and I don’t hide it at all. Life is too short and this disease is too challenging. I hope and think that educating people about it has been empowering. As I thought before I got it, it was just about going to the bathroom. Now I know better and so do those around me.

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