Intolerant To Almost All Meds-How Can I Find Remission?

Meet Makiaa:

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.

Colitis Story:

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.

Colitis Medications:

Tried::
Pentasa
Mezavant
4 different versions of Salofalk
Steroids
6MP
Steroid Foam
Acetersol
Human Probiotic Infusion

Currently on:
VSL#3
Pariat (acid blocker)
Trying Salofalk tonight

written by Makiaa

submitted in the colitis venting area




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14 Responses to Intolerant To Almost All Meds-How Can I Find Remission?

  1. Polly
    Polly November 7, 2012 at 8:51 am #

    Hi Makiaa!!

    I feel your pain… we’ve all been there!!! I also used to be REALLY into salsa dancing… I haven’t gone in years!!! :(

    I’m at work right now, so this is going to be brief… get on MEGA HIGH doses of Vitamin D to get the inflammation down!!! You can look into the anti-inflammatory diet as well. Your dietary situation seems quite similar to mine… so you can check that out.

    Keep up with the probiotics!!! And lots of them!!! You can get some GABA (amino acid neuro-transmitter) to help you with the anxiety during this rough time. It’s available over-the-counter.
    Fish Oil (Omega 3’s), turmeric, boswellia… those things are good too… :)

    Hang in there!!!
    It will be OK!!!

    Sending you a BIG hug from Minnesota, USA!
    Polly

  2. AJ November 7, 2012 at 2:12 pm #

    As Polly said, we have ALL been there and it is a very lonely disease. My recent flare, 6 weeks and the normal prednisone (steroid) did NOT work this time. Had another colonoscopy and it’s spread throughout my colon now. So, they are recommending remicade infusion treatment that I start tomorrow.

  3. Debbie November 7, 2012 at 3:34 pm #

    Hi Makiaa…yes we’ve all been there. This is a horrific disease. I was diagnosed 4 years ago. And none of the meds worked for me…none. They kept saying “double the medicine” …wasnt working so they said “double the medicine again. It didnt work. The steroids triggered an arrythmia so I cant take them. One doctor actually said that I should try smoking. Ha…no way. I quit 31 years ago…I told him..”when pigs fly.” Well nothing was working so I begrudgingly tried smoking a cigarette…hated it. Did it for a couple of weeks and noticed a dramatic difference. Pigs were flying around my house. I also did do the probiotics and they helped alot too. But as we all know, the flares come from the twilight zone and there we are again. And I do watch what I eat very carefully. But this illness won’t be defeated….yet. I am terrified to see a GI doctor again because when I was in the hospital they gave me 7 Cat Scans and alot of them were mistakes…they were for other people. So I am trying to take care of this myself. I do wish you and all my fellow sufferers the blessing of a cure. I pray that someday soon there will be an end to this nightmare disease. In the meantime know that you are not alone. We are here for each other.

  4. Debbie November 7, 2012 at 3:38 pm #

    And by the way…VSL#3, the probiotic, is covered by some medical insurance….its very expensive so if you have medical insurance, call them to see if they cover it. Cant hurt to ask.

  5. bev November 7, 2012 at 10:52 pm #

    Hi Makiaa,

    You can always feel free and comfortable on here to vent.

    I am happy to see that you are taking a probiotic. How long have you been on it? They can take up to a month or more to really work…don’t stop taking them no matter what…okay? They will not hurt you, unlike the meds.

    Every med made me ill too and I won’t take the any more. I’d almost rather have surgery than take another med. Been there, done that…nothing worked.

    I am only on probiotics and L-glutamine now, and somehow that got me into complete remission. I wish that for you as well.

    Cheers,
    Bev:)

  6. Makiaa November 8, 2012 at 1:53 am #

    Thank you everyone for your replies………I’m so distraught and your kind responses made me cry from compassion.

    The situation is now this. I have this pain in my stomach (like an ulcer) the Gastro said it was erosion and has me on acid blockers. Sometimes they help sometimes not. I am also unsure if it’s anxiety causing it to feel worse.

    I have been taking 2 VSL3 daily for about 3 months now, and you cannot get the DS ones here in Australia and my insurance pays nothing for them at all (they are $130 for a pack of 30).

    As far as your vitamin suggestions (fish oil and vit D), I am so struggling to eat anything (no one knows if I have food intolerances and IBS)…..that fish oil of any kind (Tried 10 versions, tried flax seed oil and krill oil as well) all give me bad reflux and nausea. So stopped those ages ago.

    Vit D and multivitamins upset my stomach. I need intravenous vitamins but you can’t get them here.

    I’m trying gut powder with glutamine, rutin, quercetin, bromelain (all natural anti inflammatories) and struggling to take even that daily as everything makes me nauseous.

    My gastro today gave me 2 options. 1) Start oral pred again (which makes me insanely depressed and crazy, not to mention th ehair loss, weight gain, and facial hair) or 2) Go into the hospital and get IV Steroids and be monitored.

    Lastly my parents have offered to fly me ot the USA (where I’m orig from) and with no medical pay for my doctors and gastro visits there as they are convinced the medical is superior. Plus then I’d have fmaily to help me out as I live alone here and my boyfriend is interstate.

    So I’m now faced with the option of quitting my job and losing lots of income, in order to go to the usa for treatment or even if I don’t go the stress of getting to work, focusing, and trying to get there without soiling myself is a huge stress. SO if I quit, I lose the stress of getting to work, and working, but I lose the social aspect of being out of the house and trying to maintain sanity. Or if i don’t quit, I have the stress of being sick and losing the job anyway cuz I’,m missing so many days from this $%&*()) horrible illness.

    ARGHHHHHHHHHHHHHHHHHHHHH I so hate this disease!

    I read about this amazing guy in San DIego doing clinical trials for a drug that promotes HEALING the colon, not on shutting off our immune system like all the old favourites. But it’s not yet approved for COlitis yet.

    OMG what do I do? I worry so much about not working and having no way to take care of myself and continue with insurance and medical but at the same time my illness is causing me to miss work and eventually I’ll lose the job from lack of productivity. THis is so unfair and horrific.

    I know you all get it, and I’m so GRATEFUL for your compassion and comments.

    Please can you all elaborate on the following:

    POLLY
    What is GABA and what dosage?
    What is a Mega dose of Vit D? How much literally and how often?

    DEBBIE
    I too hated going back to smoking but I’m not seeing any difference as last year it put me in remission but when I quit this flare started and smoking hasn’t sorted it yet (been trying off and on for 3 months now).

    BEV
    What dosages of probiotics and glutamin are you taking?

    Anyone with recommendations please give me dosages, how many times a day, etc.

    THANK YOU THANK YOU THANK YOU!!

    xxxoo
    Makiaa

    • bev November 8, 2012 at 9:10 am #

      makiaa…

      That guy in San Diego sure sounds promising! We must find out more about that. Shutting down our immune system is NOT the answer, as we all know. I wonder who came up with that little nugget? Let’s shut down the immune system…how is that EVER a good thing to do?? Sheesh. Also, nausea is the WORST!!! I was nauseated, sometimes severly, for about three years straight. What a terrible thing to actually get used to…but I guess I did…wow…it sure sucked. I think taht was the worst thing because you are NEVER hungry and eating is one of the good things in life…

      Anyway, I take a probiotic called ULTIMATE FLORA CRITICAL CARE by RENEWLIFE. Not sure of the availability in Australia…but it is a 50 billion strain one for people who ‘really’ need probiotics…that’s us!! They cost me about $40 per month.

      As for the L-glutamine, you can take anywhere from one scoop (the scoop is provided right in the tub of it) to 8 scoops per day. I was only taking one when I went into remission, but taking more can aslo help other problems like arthritis, which I now happily seem to have as well…lol. Also, you can play around with the dosage depending on your UC severity. You may want to start out with 8 scoops right off the bat. You have to mix in in juice though, as it’s quite grainy/chalky tasting. As far as you know, are your kidneys alright? Apparently L-glutamine should be used with caution if your kidneys are compromised. It will help to heal the colon’s mucosa, though. so it’s very beneficial.

      You seem to have alot of stress at the moment, relating to going back to the US and losing your income. Something you must really weigh out…would it benefit you more to be with your famiy at this time, or would it be better to stay put for now? I wish I could answer that for you! Such a huge amount of pressure on yourself…please pamper yourself somehow, whether it’s with your favorite music, or a movie…or whatever! You must, girl, you MUST!

      Keep talking to us…we’ll help you as much as we can on here…

      Bev xoxo

  7. Debbie November 8, 2012 at 3:42 am #

    Oh Bev, thanks for reminding me. I started taking L-Glutamine and it helped me alot too.You can get it at any health food store folks.

  8. Polly
    Polly November 8, 2012 at 10:37 am #

    Hi Makiaa,

    You have some tough decisions to make… please keep in mind that health care in the U.S. is EXPENSIVE!!! With insurance it’s crazy expensive and without insurance, it’s a nightmare. :(
    Are you able to take a medical leave from work??? That’s what I had to end up doing… it was soooooooooooo helpful.

    I take 1500 mg of GABA every morning. Here’s a link to the one I use: https://www.swansonvitamins.com/source-naturals-gaba-750-mg-180-tabs

    My naturopath Doc (back when I was in the worst flare-up ever) showed me an article from the British Journal of Medicine that said when sick, a 200 lb. person could take up to 160,000 IU of Vitamin D a day for a week. I am 115-ish lbs. and I took 100,000 IU of Vitamin D for a week, then the next week, I went down to 50,000, the week after that 30,000 and after that, 20,000… I have been at 20,000 IU for months now. I believe he said (before putting me on the 100,000 IU), “we need to get some anti-inflammatory action going”… and I will admit, it did make a huge difference for me. I also upped my probiotic intake around the same time.
    So anyway, during my week of 100,000 IU, I took 25,000 IU 4x a day.
    And now I take 10,000 IU in the morning and 10,000 IU in the evening.

    Has your Doctor suggested a fecal transplant for you? I believe that they actually were started in Australia… another option to look in to.

    Have you tried drinking coconut water for your stomach pains? I don’t know what it is… but for me… I think it just relaxes my insides and makes the pain go away…

    Oh, and another thing (along with glutamine) that will reduce the bleeding is cabbage juice.

    Hang in there! It will get better!
    Keep us posted… sending you lots of healing vibes!
    Hugs,
    Polly

    • joanna November 9, 2012 at 8:55 pm #

      hey polly, what brand of vit D do you take?

      • Polly
        Polly November 13, 2012 at 11:12 am #

        Hi!

        I take Source Naturals Vitamin D. :-)

        • joanna November 13, 2012 at 7:31 pm #

          thanks. i’ve needed to get a new brand. i heard soft gels are the best and i’ve been taking capsules mixed with various things.

  9. Debbie November 9, 2012 at 5:38 am #

    Thanks to all of you for all of this fantastic information. Lets keep helping each other …I love it. <3

  10. Vivek November 10, 2012 at 6:54 pm #

    Hello all, these stories are all so painfully familiar and I hope you find relief soon. My daughter was in a similar situation and out of desperation we tried fecal bacteriotherapy, with excellent results. Because it was so difficult to find a provider we went ahead and did it at home, with excellent results without any prescription medicines. I’ve written about it in a memoir titled “Ulcerative Colitis from the Bottom Up: A memoir of home treatment with fecal bacteriotherapy.” You can google the title if you are interested, and also google “fecal bacteriotherapy” if you’re unsure of its merits. Good luck!!

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