A Lifetime with IBD

here’s the picture Ann sent in(thx Ann!!)

Brief Intro so you can get a feel for Ann:

About 1972 (27yrs old) mother of 2, was told by my MD that I had Proctitis and should not do stool tests as there would always be blood in it. There was no internet and so knew very little about it. Wasn’t sent to specialist either so drifted along having changing symptoms and not recognizing them as part do this disease. I would have stomach flu ( I thought) 3-4 times a year (saliva, vomiting, diarrhea, bloody mucus stools. This went on for years. Over the 40 years the symptoms morphed or changed and since I was told very little about it I wasn’t able to recognize that it was all the same disease. I have spent my life thinking that if you had diarrhea you also had vomiting. Who knew, nobody talked about it..it involved your bowels and feces euch! About 1985 I developed incredible gassy, bloody mucus, diarrhea 20-30 times daily. Was prescribed (for the first time), SALOFALK ENEMAS which I used for a couple of weeks and then stopped…was fin e. These reoccurred and I used the enemas for a few weeks then stopped. SYMPTOM CHANGE…I saw Proctologists (that what they called them back then). But no education.

Ann’s Hobbies:

Loves Genealogy, reading, love movies, swim in condos indoor pool all year. Walking the Ambleside sea wall. Shopping, but only as a blood sport! ( searching out best deals for lowest prices).

Ambleside Sea

the Ambleside sea where Ann likes to walk:)

Ulcerative Colitis Symptoms She has Dealt/Dealing with:

A major flare up started in Oct 2014 (never took pills regularly before). On them I have 4/5 ok bms daily with DIARRHEA every 10-12 days. In last few months the flares days have become more frequent at 5-7 monthly. It’s Sept 21 and I’ve had 7 already. So averaging a flare every 3 days which leaves me 2 days to get over the fatigue and exhaustion before the next one comes along. On top of that, my MD and GASTRO think all I really need is the enemas even though whenever I have tried to reduce 1 800 mg ASACOL I can only go about 2 days before the DIARRHE increases even more. Oh, and I have a really sore ass from using enemas EVERY NIGHT FOR ALMOST 3 YEARS!( in spite of the Vaseline).

Ann’s Story: A Lifetime with IBD

On August 2 I started new med for GERD caller pantoprazole 40 mg. to treat spasms in my esophagus, and it worked. But the increase in flares started about two weeks after I started it. Has anyone had any experience with drug? Has it causied Diarrhea?

have very droopy eyelids which have been checked out and apparently qualify for correction under BC medical insurance. I have to stop the meds for 10 days before surgery. I figure I will have to do it before the surgical date to see if I can manage it (or am unable to move 5 feet from the bathroom). I’ve read a number of times that when you stop meds that have been working for you…they may not work when you go back on them. Does anyone have any experience with this?

Auto-Immune Diseases:

Rheumatic fever at age 5…rheumatic heart disease

Idiopathic thrombectic purpura (ITP) platelets at 0) Started with 80 mg of prednisone to shut down immune system then spent 8 months slowly weining off it. Since they don’t know what causes iITPmy dr says that I am in remission…but can not take NSAIDS….so I live in fear that the ASACOL or Enemas will trigger a relapse

Diabetes (mild)

Inflammatory bowel disease

Medications:

  • ASACOL 800 mg x4 daily
  • Salofalk Enema daily
  • PANTOPRAZOLE 40 mg daily ( was on Ranitidine 150 mg x4 daily
  • Zopiclone three quarters of 7.5 mg nightly (have horrible sleep..do you?)is it a UC thing?
  • 2 extra strength Tylenol 3 times daily for bsck and knee pain.

So, I’ve been a widow for 8 1/2 years now. I have little stress in my life, have no financial worries. But in spite of this blasted disease I am still overweight (how I don’t know).

I try to be upfront about IBD cause it’s not something to whisper about just because it’s your butt. Whenever the subject comes up, I’m told, but you look healthy (they ought to see me in the middle of a flare). And asked can you do xxxxx, my answer is I’m well, til I’m not well and I don’t know if I can do anything until it happens. IT is definitely a frustrating disease!

Some final thoughts from Ann:

I have never found any specific food triggers. Or beer or wine. I drink diet pop. NO CAFFINE and only one decaf tea daily.
I have found if I’m out and have a large meal I am more likely to have a flare up, so small meals are better

written by Ann

submitted in the colitis venting area

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One Response to A Lifetime with IBD

  1. Diane D
    Diane Dale October 29, 2017 at 12:19 pm #

    Where you ever upgraded beyond proctitis? It sounds like you should have been?

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