Just over 40 Female, Colitis Dx 2007 living in Australia. Have successfully worked through 3 flares but now am struggling with the latest one. I’ve been in I.T. with business travel for 15 yrs but last 2 yrs cut it down to working local jobs to minimize stress, exhaustion etc.
Current Colitis Symptoms:
Currently for 5.5 months bleeding, urgency, cramping, lots of mucus and intolerance to nearly all food.
I’ll try to summarise as my story is long. 2007, my first diagnosis of Proctitis, only 3cm. I was put into remission using a steroid foam and happily went along my way for over 2 yrs.
In 2009, it came back with a bloody vengeance (yes pun intended)….and was now 35Cm UC. I spent 7 months trying the steroid foam which helped to lessen symptoms, but not remission. Tried Pentasa which I found caused the frequency/cramping and urgency to increase, so gave up after a couple months. Tried oral 5ASA which all made me sick. Then gave up and tried the deadly steroid pills which after 2 days on 30 or 40mg was in complete remission…but still suffered through 9 weeks of taper. I was blissed out……… until the steroid side effects kicked in, then I was an insane, angry, depressed, fat, bearded woman. Oh the joys of steroids!
I was so fearful of all other drugs, I didn’t try anything to retain remission and sadly just over a year later in mid 2010, I was out of remission again. This time I tried several options……started back on the steroid foam, then tried rectal suppositories called Acetarsol (made with arsenic so only allowed 30 days) They were great, nearly got to remission and decreased symptoms, but had to stop after 30 days then things went downhill again. So did my hope.. :(
I tried oral mezavant and was so ill I was ready to give up, so stopped that. Then tried oral steroids again, and all the horrific side effects but no remission. So you can imagine was even more depressed.
My then Gastro thought it was more IBS causing my cramping and frequency even though I’d been diagnosed with 35cm UC. So we tried a low fibre diet. This helped but not much. So then we tried the FODMAP diet which stopped all the symptoms except the bleeding. Since I was a reformed smoker, I literally went back to smoking and then the blood stopped. I was in remission and felt so hopeful, except I didn’t want to smoke. :(
So while still in remission I had another Colonoscopy 2012, and was again told clinical remission, but I thought I’d try the Human Probiotic Infusion to see if that kept me in remission. If you don’t know what it is, google it. It’s getting probiotics from a healthy gut, it’s gross but I was desperate. So did that for a few weeks and went on my merry remission way……..I quit smoking 5 months in as I was convinced I was in remission to stay……..sadly 4 weeks after quitting (still on the diet) my blood and symptoms returned. :((
I was determined to avoid the Immunosuppresants. I’d moved again so had to find a new gastro. Things have gotten so bad, I’ve had to cut my work down to 3 days a week (which is reducing my income which I need to pay for all my medicals).
I went super strict on the FODMAP diet (no cheating), I tried nicotine gum and patches but still couldn’t get into remission. I looked up the SCD diet, but because I’m allergic to eggs, and already am dairy free, soy free, chemical/additive free, gluten free, and having found certain foods high in FODMAPS made me sick I didn’t have many options on the SCD diet as I can’t eat much of what’s allowed on it. So still not sure what to do about that???
The last 3 months things have gotten so bad I hardly eat, have lost like 12 pounds and have struggled making it to the bathroom on time while at home I’m now so filled with anxiety about how I will get to work that I will take anti-diarrhea meds just to make it on public transportation to work and home. Even then I still am sick at work and it’s getting harder to hide what’s wrong with me so I’m stressing out even more. Plus have now developed sleep issues and wake up a million times a night and am exhausted along with being nutrient deprived.
So then, I saw a dietician and a naturopath and have tried a slew of herbs, food elimination and got onto VSL3 which is a FORTUNE here. It did get rid of my reflux for a bit. Nothing has seemed to work and my UC symptoms are rapidly getting worse.
I just had another colonoscopy and endoscopy and found I have erosion in my stomach which explains the severe burning and pain under my rib cage and was prescribed acid blockers. Now I’ve got 20cm of UC. So the Gastro told me to try Salofalk foam (which I’ve tried in the past to no avail). I have taken it once only and was violently ill and on the toilet for several hours and the Gastro said “oh that’s because I took so many biopsies, give your guts time to heal then take it again before you see me” Which is tomorrow. I’m fearful but I’ll try it again tonight to see how I go. I just know in the past if I’ve managed to tolerate it for a few weeks, my symptoms increased on 5ASA.
Anyway, I’m just at my wits end…I’m now on month 6 of this flare, oh, I did try 6mp for 5 days but the violent nausea made me incapable of working so I had to stop that.
I’m just filled with anxiety about losing my job to this illness and I’m self-supporting. I’ve lost my life, I used to salsa dance, rollerblade, cycle, gym, travel every weekend and go for long walks. I am stuck in my house alone a lot, and my friends seem to have started to slip away as I’m constantly saying “sorry can’t go” or “is there a toilet nearby”. So I’ve gotten severely depressed. My boyfriend lives out of state so that’s hard too.
I went to a psychologist who said she couldn’t help me and to get on mood elevators. I’m thinking surely remission would elevate my mood!!! Grrrrrrrr
Tomorrow I see the gastro again to find out our next steps, I also see a new GP who is a therapist and allegedly an ‘energy healer’ so hopeful at least she’ll be compassionate. I have no clue what’s next on the cards for drugs as I seem to get every side effect from everything and of course I know my anxiety is probably making the symptoms worse, but with the symptoms getting worse I get more anxiety about leaving the house. I’m sure many of you know the plight and fear of messing up your pants. Adam always talks about ‘hard poops’, I can’t remember the last one!!!
Anyway, thanks for letting me vent….. I’m just so sad and I feel like my boyfriend doesn’t get the severity of this disease. He even suggested I come spend a weekend in a 1bedroom apt with him and 2 of his family members. I said ‘4 ppl and one toilet are you crazy?”. Forgetting the embarrassment of the noises, I was mostly concerned I’d soil myself as there were too many ppl to share one toilet. I’m sure you all get this, but he didn’t get how impossible that was for me and I got very sad.
I don’t really have any questions except about how to try the SCD diet when I have so many food intolerances already that half of their recommendations I can’t ingest. And anyone have major reactions to 5ASA but stuck it out and got somewhere with this drug? Other than that, the support is just nice.
Thanks for listening, reading and/or responding.
Where I’d like to be in 1 year:
REMISSION and living my life again, hopefully salsa dancing and back to gym.
4 different versions of Salofalk
Human Probiotic Infusion
Pariat (acid blocker)
Trying Salofalk tonight
written by Makiaa
submitted in the colitis venting area