Not Crohns but Ulcerative Colitis – There Will Be Blood

crohn's to ulcerative colitisIntroduction:

My name Is Cynthia
I’m 24 soon 25 :)
Only Child
Have Proctitis UC diagnosed September 2007.
**Hoping to someday be ulcerative colitis free without the need of surgery**

Some more about me:

Love to read, go to the movies and eat lol
I like rock music, some metal, hip hop, almost everything even opera and classical music.
Hopeless romantic.
Funny, really good friend.

Symptoms I’m dealing with:

going through an annoying flare up (2 months)
just blood in stool

Not Crohns but Ulcerative Colitis

First time i saw blood was in early Jan 2006, since my dad is in dialysis we at that time were spending alot of time in the hospital so my thought was: no need to add to the stress, I’m sure this is a one time thing (i was a teenager 17) oh boy! i was completely wrong, it continued happening daily.

Still didn’t want to add to the stress, fast forward to Jan 2007, I see lots of blood got freaked out finally told my mom, of course she got upset for not telling her sooner and because we had no idea what was wrong.

A week later had an appointment with the gynecologist (since I also had blood in my urine).
Did a routine check up, asked for some stool samples, the samples didn’t show any blood, did another check up, found blood “back there”.

Feb 2007 went to a specialist in colon surgery, she thought the reason for my bleeding came from hemorrhoids, did some in office procedures, prescribed suppositories, (my grandma passed away March) but of course the bleeding continued, finally decided to give a colonoscopy June 2007, at last an answer or was it?

*all this with no insurance*

She said you have Crohn’s Disease. I was thinking what is that? never heard of it before, she gave a pamphlet, I got freaked out after seeing what it was, she referred me to an gastroenterologist, after looking at the colonoscopy results he wasn’t convinced it was Crohn’s so he did a sigmoidoscopy August 2007 and finally a week before my bday, I had my answer it was UC (proctitis). And a week after my birthday had an allergic reaction to an antibiotic, I was like a day away from my throat completely closing , never had allergies, but now I’m allergic to penicillin.

Not going to lie, I was relieved knowing it wasn’t Crohn’s.
I never had/still don’t have pain (only a little cramp near my belly button, goes away in secs) sometimes I have some bloating, no diarrhea, only go to the bathroom 1-3 times, but knowing I have to deal with this for the rest of my life it’s not something I like to think about but it’s something I can’t ignored.

I keep thinking whats going to happen when its time to have kids? Can I breastfeed? Are my symptoms going to get worse during/after pregnancy?

Medications:

Sulfazalazine 500mg 3 tablets 3 times a day
Folic Acid 1mg

First “bad” mostly annoying flare up in 2011
used (2) Cortifoam- hydrocortisone acetate 10%
(with no insurance cost $200+)

Now going throught another flare up (2 months) using the same foam, doc gave some samples but now it’s not working.
have an appt next week.

written by Cynthia

submitted in the colitis venting area









10 Responses to Not Crohns but Ulcerative Colitis – There Will Be Blood

  1. uma July 28, 2013 at 5:38 pm #

    Cynthia please try probiotics. I use Garden of life Primal defense and have been colitis free for the past 3 years. I take sulfasalazine and folic acid too.

    • Cynthia PM
      Cynthia PM July 30, 2013 at 2:26 pm #

      I will try them, thanks. i have to ask for a presciption or are they something i can buy on my own?
      would activia also help?

  2. Joan H
    Hope July 29, 2013 at 7:07 pm #

    Hi Cynthia- I have to say reading your story reminded me of me at 24 or 25. I’m almost 50 now, 4 kids later and married for all these years to a husband who has been very supportive and understanding of the UC and proctitis I’ve had all these years. It’s good you went to a DR, and I’m glad you know more about what your symptoms are. They’re pretty scary when they first start. I have had healthy kids, pregnancies did not really affect my UC in a negative way, and I breastfed all my kids. I know how expensive the medicines can be. There’s a lot you can do with diet and I did very well once I added the probiotics to my diet (I take Renew Life Adult 15 billion) once a day. I still take lialda 1.2 GM 2 tabs twice a day and a canasa suppository at night, but by changing my diet and adding the probiotics, I have had no bleeding for weeks , pretty much pain free with an occasional “blip” of pain, maintaining my weight, etc. I would check this site daily, if not then very frequently because the insight from other UCers is fantastic, and each one of us is so individual you can take some advice and if it works for you, that’s great, and if not there is always more info, research posted and videos here. Lots of positive support. For the meds, check with your MD – ask for samples and let them know you have no insurance and can’t afford the meds for now – I’ve worked in the medical field for years (RN) and the drug reps drop supplies of samples daily that the DR’s are waiting to give patients who need them. I’d do that til you’re out of the flare, and also get in touch with Crohn’s and Colitis Foundation of America – they can be a great help too :) Best to you! – Hope

    • Cynthia PM
      Cynthia PM July 30, 2013 at 2:32 pm #

      thanks. its a great relief knowing i can and probably will have a smooth pregnancy(in a few years lol)
      will defenitely look into priobiotics, since the foam didnt work, doc said since i have no pain i dont use the restroom more than 6 times, the bleeding its not a big deal, since its not alot. have an apt in three months if bleeding gets worse he will prescribe prednisone, i really dont want to take it.
      as far as the diet changes go, for now the doc said no more red meats.

      so i will try the priobitics asap
      thanks again.

  3. uc family boy July 30, 2013 at 3:38 am #

    if you have uc and seems mild now, maybe try Fecal Tranplant to re-populate the rectum area and over power the bad bacteria. maybe you only need a small number of infusions..
    Worth a go

    • Cynthia PM
      Cynthia PM July 30, 2013 at 2:35 pm #

      thanks for the tip but thats not something i want to do, at least not until i absolutely need it.

  4. Sharon July 31, 2013 at 4:46 am #

    Like Hope, I have 4 healthy kids and had easy pregnancies. I breastfed the 1st 3 for almost a year each but never had milk for my 4th. I tend to have a minor flare in the 1st trimester and stayed on sulfasalizine or Asacol with all 4 pregnancies because of that. I also flared after 2 of my deliveries but still managed just fine. The best thing you can do is let go of the worry of the future. Worry=stress=flares (not always but a factor).

    I agree with everyone else that probiotics are the way to go. Without insurance, I would use the Renew Ultimate Flora that Bev uses. It runs about $35/month. Also, if you want to change your diet but don’t want to be as restricted as the SCD, I would highly recommend “What to Eat With IBD”. It’s written by a nutritionalist who has Crohn’s (I think that’s right). It gave me great insight as to which foods irritate the colon and which ones heal.

    I have had UC for 23 years. I know it’s overwhelming now but I promise that you can have an awesome, full, happy life.

    • Cynthia PM
      Cynthia PM August 16, 2013 at 1:36 pm #

      its good to know pregnancy for the most part doesnt affect uc that much, hopefully i wont have major complications.
      yeah, im going to try probiotics asap.
      will try to find that book :)
      thanks

  5. brenda hall November 24, 2013 at 9:52 am #

    I was having stomach problems in June 2013. Had an endoscopy and colonoscopy on July 3. Four days later started diarrhea, continued for 3 weeks, lost 12 lbs. Colon was clear, had gastritis and stomach liaisons. I went to another GI, he put me on Flagyl for 10 days and diarrhea slowed down. Had a second colonoscopy August 10th and was told I had UC. I don’t understand why UC didn’t show up the first colonoscopy. I have doubts that I even have UC. All stool samples were negative for anything. So confused and don’t want to take the prescribed meds due to side effects. Am currently taking Asacol HD. Any input would help.

  6. brenda hall November 24, 2013 at 9:55 am #

    Forgot my age is 64. Never had any problem before first colonoscopy.

Leave a Reply

No matter what, colitis flares don't last forever, don't forget it:)