Ulcerative Colitis Tips


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Long Suffering

Introduction:

Hi I’m Siobhan. I’m from Ireland(Dublin),

I have been attending the hospital for the last thirteen years or so with colitis, so know all about the ups and downs of it.

Some more about me:

I’m 42,(feel about 100),work full time,like walking and keeping fit,watching bad movies!enjoying eating out with friends or family.

Symptoms:

At the moment I have some inflammation on my colon.i have had this since before my holiday on and off,it was really bad on holiday,had a bad reaction after most things i ate(was in Spain)my stomach was really bloated and nothing seemed to help,i would take ages in any toilet i went to,and still have to go in 5 minutes later,most the time i would be urgently looking for a toilet!

Long Suffering

I was first diagnosed with colitis in 1999. I had been working shifts from 8 at night till 8 next morning, used to have to get 2 bus’s there. Personally I think this brought on this disease, as I was so tired and run down before I even got to the job and wasnt sleeping properly during the day or eating properly. My body’s rhythm was completely out of sync.

I got to the stage that I was in such pain i couldn’t take it anymore.  I was on the bus going to work one night, and i just about made it to the toilet.  I had a terrible uncomfortable journey with it most nights.

One night before I went to work, i didn’t feel well at all, I had diarrhea, and had a black out.  My dad had to ring the job and tell them I wouldn’t be able to go in.  I wouldn’t have made the journey even out of the house.  I was also throwing up all this brown stuff and having diarrhea about the same time as it.  I was really worried.

Anyway, i decided to get it sorted, and i also got a normal day job,which helped.anyway.

Back to the present day, I have just had a colonoscopy on Tuesday, (this is my 3rd one since i was first diagnosed)  They prescribed predfoam enemas for me, but every chemist i tried said it was discontinued!so i had to go back up to the hospital again and this time they put me on pentasa enemas, which they don’t seem to have anywhere either,may have to go back up the hospital,anyone else have these problems?am really tired going back and forth to the hospital and explaining what happened, and hoping whatever else they give me they will have in the chemist.i have to take the this medication before i go back for my results in about 2 weeks time,the stress of it all between trying to work and get time off for these appointments is just aggravating my condition.

Medications:

Imuran (cant remember how long ), but i don’t really think its working.
I’m on mezavant now the past month, i think it seems to be working.  Taking that with the Imuran, felt a bit dizzy at first after taking it, but i think it was because I had a bit of a cold and was taking uniflu for that as well.  The paracetomol in it may not have agreed with it.

written by Siobhan




51 Responses to Long Suffering

  1. Don June 23, 2013 at 11:01 am #

    Hello Shivvy, I too have had Colitas for many many years. My best med is Remicade. It is given via an I.V. every two months. Since you are having difficulties getting your prescribed meds, you might waant to ask your doctor if Remicade would be an good option.

    Don

  2. Sharon June 23, 2013 at 11:14 am #

    Welcome to the group, even though you have been part of the club for a long time. I am also 42 and there are days I also feel 100. I was diagnosed at 19 so I am right there with you on the long suffering. I usually feel that way when I am in a flare or just coming out of one. Once I get my groove back and steady on without symptoms, I feel great. I think that when our bodies get worn down, our spirits get equally pummeled. The good news is that we are a resilient lot and you can’t keep us down. You have dealt with this illness/disease/condition/BS for a long time and sometimes it gets overwhelming. I always think back to a sermon I once heard in church. The pastor said that when he bought his house, no one told him that with interest and monthly payments and repairs and taxes, etc he would end up paying over a million dollars in the life of the loan. If they had told him that, he would have insisted he could never afford it. Instead, he was given a monthly payment. It may have been a stretch at times but all he had to do was pay each month. That was more manageable. In the same way, God doesn’t tell us all the crap in life we will have to deal with (bloody or not) up front. If He did, I for one would be quick to say that I can’t handle it. Instead, we are given one day at a time. As for me, I depend on Him each day to give me what I need for that day. With 4 kids and a crazy digestive system, that could be more than I think I can handle but He gives me strength, grace, mercy and sometimes a great neighbor to get me through. I didn’t intend to get all preachy on you but I do want you to know you are not alone in this.

    • Caroline
      Caroline June 23, 2013 at 6:03 pm #

      Sharon – thank you for the house/mortgage analogy! I really needed to hear that today – it’s so easy for me to get ahead of myself with EVERYTHING. :)

      Hope everyone is having a good day today!
      Caroline

    • Katy June 23, 2013 at 6:05 pm #

      Sharon, I need to read that, thanks. I struggle so much sometimes, I feel like I can’t take anymore.

  3. PeterNZ June 23, 2013 at 1:38 pm #

    Poor thing.
    Ask your doctor about 40mg prednisone daily. Start today. You will be better tomorrow.
    Cheers,
    Peter

    • siobhan June 23, 2013 at 3:27 pm #

      thanks everyone,not really looking forward to going back and getting my results in a few weeks,wouldnt say they be too great!especially as i cant even get the medication im supposed to be on!but anyway i’ll see what happens tommorow,keep you posted!

      • Ally July 2, 2013 at 2:37 pm #

        hi Siobhan

        living in Ireland too (cork) I know only too well how hard it is to get the meds for UC. I was on asacolon but its too expensive so I weaned myself off and got pentasa suppositories but they gave me tummy ache very early morning, I now follow the SCD diet about 90% of the time and take digestive enzymes and a probiotic from health shop, I changed to goats milk too and also drink lots of mint tea after eating. I have stopped bleeding and taking no meds. Not sure if this would help but wanted to share. I totally agree with the stress thing too! we need to breathe and take it easy :) Ally

        • siobhan July 2, 2013 at 3:22 pm #

          hi, i tried mint tea before, didnt really help, think i need to just win lotto!then i wont have any stress!-lol.i would be so relaxed that my colitis would just go away!just finished the pentasa enemas last night,back next monday for the results of all my tests from 2 months ago and how i am after the colonoscopy,wish me luck!

  4. bev June 23, 2013 at 4:10 pm #

    Drugs never worked for me…or if they did even a bit, they didn’t for long. Made me feel awful-er too…

    I am in remission and completely med free for 14 months now, just on a GOOD probiotic (50 billion strong)which gave me back my good bacteria, and fermented L-glutamine powder, which heals the ulcers in the colon, thus healing the colon.

    It can happen!

    Cheers,
    Bev
    :)

    • Katy June 23, 2013 at 6:04 pm #

      Bev, what probiotic do you take and what brand glutamine powder? Thanks!

    • Sharon June 24, 2013 at 4:23 pm #

      “awful-er”… I love it:)

      • bev June 24, 2013 at 4:58 pm #

        A made up word…I love it too!

    • Michele September 1, 2014 at 6:56 am #

      Hi Bev. You had mentioned that you take fermented L-glutamine. Are all L-glutamines fermented? Is there a brand that you prefer? Thank you kindly!

      • Bev September 1, 2014 at 7:38 am #

        Hi Michele,

        I’m not sure if all l-glutamines are fermented, actually. Does anyone else know?

        I take NORTH COAST NATURALS FERMENTED UNFLAVORED POWDERED l-glutamine.

        Cheers,
        Bev

  5. bev June 23, 2013 at 9:52 pm #

    I take Ultimate Flora Critical Care by RenewLife. One capsule daily. EMPTY STOMACH, AND NO EATING FOR AT LEAST HALF AN HOUR.

    I take North Coast Naturals L-glutamine powder. Also EMPTY STOMACH, mixed in a teaspoon of juice, just for taste.

    Cheers
    :)

  6. bev June 23, 2013 at 9:53 pm #

    North Coast Naturals FERMENTED L-glutamine powder, that is…

    • siobhan June 24, 2013 at 6:45 am #

      i find eating an activia plain natural yogurt helps sort out my stomach temporarily, is the same stuff in the probiotic you take similar to whats in the yogurt i wonder?

      • bev June 24, 2013 at 8:38 am #

        Not sure about the yogurt compared to the probiotic, Siobhan…but the probiotic definitely WORKS!!

        See Ann…below…

        :)

  7. siobhan June 24, 2013 at 7:03 am #

    hi, got an appointment this morning to get a test done in the RESPIRATORY ASSESMENT UNIT in my hospital,rang them up to find out whats going on and why i have to go there, they said it was routine and my dr. sent me.its to test for TB! DOES ANYONE KNOW WAHT TO MAKE OF THIS?i have to get it done on the monday and get the results on the wednesday,its such short notice,dont even know if i can get the time off for it!

    • shelly in maine June 24, 2013 at 1:28 pm #

      Sioban,
      Those tests are usually done before they put you on the biggy meds like Remicade, Humira, etc…the tnf blockers and meds like that.
      Be careful with ypthe activia…it aggravated my system maybe the yogurt itself. That’s why SCD strict people make their own. I just gave up most all milk products and take Vsl 3 prescription strength. But you should definitely invest in a good quality probiotics like everyone says. Look what you just dished out for traditional meds. Promise you the good quality probiotics are a must! :-) oh and the Dr.’s will tell you that probiotics and diet don’t matter…we’re here to tell you otherwise! And pay close attention to how you feel on the meds and whether they are helping or hurting.
      Best, Shelly

  8. Ann June 24, 2013 at 8:32 am #

    Siobhan, never heard of anyone having to get this test with UC. I woould definitely question it. I’m with Bev. I just started the probiotic she recommends along with the fermented L-glutamine powder on June 20th, 2013. I swear I am feeling better already. I have not seen any blood since June 22nd and my energy level has skyrocketed! I know this is soon to be saying it but I am really thinking this probiotic is my cure. I think the evoo and other anti-inflammatory foods heal it but the probiotic keeps the bacteria in check, therefore, prevents the bad bacteria from taking over the colon. Hi Bev, aren’t you thrilled with my news! If this is truly some peoples cure, we have got to get the word out. You are doing a great job doing that! THANK YOU!

    • bev June 24, 2013 at 8:37 am #

      Ann…MARVELOUS!!!!!

      That probiotic really replaces something that we UCers all seem to need. There is something ;’magic’ in it I swear!!

      I feel the same way…that probiotic was the BEST thing I EVER did!! I wish I could CONVINCE EVERYONE to try it! I was like you…it worked within days…HOWEVER, it can take longer!! All you UCers must hang in there…it isn’t the same quickness for everyone. AND…you MUST take it on an empty stomach and not eat for at LEAST half an hour. Let it do it’s ‘job’…get your money’s worth!!

      I am so so so happy, Ann. Truly. I swear I literally cry every time another UCer hgets better, especially on the same thing that worked for me…of freakin’ happy day!!!

      Bev

  9. siobhan June 24, 2013 at 9:17 am #

    would it get rid of all the mucus i sometimes pass?does anyone else get this?

  10. Ann June 24, 2013 at 9:18 am #

    I think the magic is the bifidobacterium that goes directly to the colon (lower intestine). The probiotic effects in yogurt and other types of probiotic capsules get destroyed before they have a chance to get to the colon. I can’t tell you how many times I read the information on the box to really get an understanding of this particular probiotic. They are all not the same. This one is expensive but worth it’s weight in GOLD! Do you have any idea of how many people you have told that are still having luck with this? Do you know if Adam or Graham has tried it yet?

    • Ann June 24, 2013 at 9:20 am #

      Siobhan, It got rid of the mucus and the blood. It’s worth a try.

    • bev June 24, 2013 at 9:42 am #

      I think you are correct about all of that…just as an aside…I tried RenewLife’s 80 billion colon probiotic, thinking that it might be even better, and it is not! At least, not for me. The 50 billion Critical care one works better on me! The strains are almost totally different, too.

      The RenewLife company should be told this. I do so much better on the Critical Care 50 billion probiotic of theirs than on the NEW Colon Care 80 billion, which strikes me sort of strange. I notice one strain in particular…bifido fermentum (or something like that)…it’s in the Critical Care one but not in the Colon Care one. Mmmm…fermentum…smacks of fermented L-glutamine and all things fermented…an important little nugget of information perhaps?

      As for how many people have tried ‘my’ probiotic and had success…I don’t really know! I should be keeping a tally…lol…I actually should write another UC story on this site just about that probiotic. I wish both Adam and Grahem would incorporate it intyo their lives. I believe SO strongly in it’s ability to cause ‘cure’…they may not have to follow SCD diets nor take olive oil…but5 when ANYTHING works good, I guess it’s best to stick with it, right guys?

      I’m just happy that I can eat literally whatever I want. It’s a good and easy way to live.

      Cheers:)

  11. Ann June 24, 2013 at 9:49 am #

    I am happy for you too! I will think of you this evening as I am having my glass of wine!
    Cheers back at you! ;)

    • bev June 24, 2013 at 10:04 am #

      Aren’t we a pair??

      You can have that wine without worry, I’m positive!!

      That’s living the good ‘normal’ life…

      • Sharon June 24, 2013 at 4:27 pm #

        I had a glass last night and thoroughly enjoyed it :)

  12. Ann June 24, 2013 at 10:12 am #

    Yes we are!! I really wish I could meet you some day and have that drink with you!

  13. bev June 24, 2013 at 10:32 am #

    You just never know, Ann…Adam may have a ‘convention’ someday, huh Adam? In Californ – I A??

  14. siobhan June 24, 2013 at 11:45 am #

    oh my god!just back from the pharmacy,had to pay out 60euro for 1 weeks supply of pentasa enemas!although to be fair,its not the chemist i normally get my other tablets in,they hadnt got them.(im in a drug refund payment sceme in my own chemist),so only pay a certain amount a month.anyway,they are huge!i hope i can use them properly.wish they could find a cure for this damn illness,costing me a fortune!

  15. Ann June 24, 2013 at 12:39 pm #

    Siobhan, I know the cost is maddening. I still say you need to give the probiotic that Bev refers to a try…I waited because it was so expensive. I wish now I had started it much sooner now that I’ve seen the results. Good Luck!

    • siobhan June 24, 2013 at 1:11 pm #

      how much is it?do they sell it in ireland?i have to brace myself to start these pentasa suppositorys soon,not looking forward to it!and what about the fermented l glutamine?is that expensive?cant do anything till i go back the hospital and get all my results from my tests.i will mention them to the dr.unfortunatly i get a different dr.everytime im down,usually one i cant undertand(im not racist by the wasy)it just makes my visit more stressful!

      • bev June 24, 2013 at 5:03 pm #

        The fermented L-glutamine that I buy is about $25 and the tub lasts well over a month, so not too bad. The probiotic is about $35 per month.

        • libby June 24, 2013 at 7:24 pm #

          more good news here!!! I’m down to 4 trips to the restroom, no more D in the morning and no more blood!!!! although I have been seeing some mucus in my stool. not a lot though. today only had 2 BMs, hopefully it’ll stay that way. I’m also down to 5mg of Pred. I going to see my GI this wk hopefully I can stop the Pred by next wk I’ve been on it for 6 mos I’m so tired of it (I’m sure my husband is too!).

          • bev June 24, 2013 at 9:56 pm #

            Are you on the probiotic and L-glutamine ‘program’ Libby?

          • libby June 25, 2013 at 4:02 am #

            yes, i am. I started it at the beginning of april. It helped with the blood quick, but the D didn’t really stop until late May. my restroom trips have been decreasing as we’ll, it’s taking a while but I’m getting there. I did stop theVSL#3 I felt like it was hurting me more than helping me.

          • bev June 25, 2013 at 7:10 am #

            Excellent…oh how fantastic, Libby.

            Keep going…like I’ve said, even 14 months into being ‘cured’, I feel better and better. I ALWAYS have firm bms now…every single day! Only one per day (first thing in the morn)!

            Sorry for all the unwanted statistics…lol

            I’m so happy for you Libby…I want us ALL to get there!!

            Bev

          • libby June 25, 2013 at 7:30 pm #

            bev, I agree everyday it gets better! I had never felt so sick in my life. this flare up did get worse even on Pred before it got better. although what I believe that helped most was the Renew Life probiotic and the L Glutamine. I was dxed in 6/10 and even then I didn’t feel as sick as I did during this flare up. I’m so thankful for this website and you all wonderful people that keep the positive words going for us going thru a flare up.

          • bev June 25, 2013 at 9:51 pm #

            I love this site too, Libby. I was so sick when I found it online.

            I’m so happy to hear that you get better and better, too. We must really be on to something…lol

            :)

          • shelly in maine June 26, 2013 at 3:46 am #

            :-) we are a great supportive community thanks to Adam! :-)

  16. Sharon June 24, 2013 at 4:38 pm #

    I use the VSL#3DS probiotic. In the past my insurance covered it and I only payed a co-pay of $35/month on the highest dosage. Once in remission, you drop to a lower amount so my script lasted twice as long. Now my insurance categorizes it as “alternative therapy” and automatically rejects payment. Because I can no longer take ASA drugs, can’t stay on steroids, and the Humira is losing effectiveness, I am appealing their decision. My GI doctor has an awesome nurse who has made 3 phone calls so far and we should have an answer any day. The point is that it is possible to appeal and if your doctor will help you, it could help you get coverage. Without the insurance, my script at Target will be $656.00. I think that is for 3 months supply at full dosage. It is definitely expensive but it put me in remission without steroids once before so I would be willing to pay it and drop the Humira. By the way, my doctor gave me a lot of samples in the beginning to see if I wanted to continue it before paying for it.

  17. Ann June 25, 2013 at 7:29 am #

    Good Morning Bev. The bad news is I had some blood last night and this morning. The good news is, I had the best bm this morning that I have had since the start of my flare about three weeks ago. I think I bled because my colon is not quite healed yet to handle larger amounts of poo. I am still convinced the Renew Life is making a huge difference in my recovery/cure. I love your statistics. That’s where I want to be and know it is not far in my future! Have a great day!

  18. bev June 25, 2013 at 8:41 am #

    ….OR the blood could be because you had the best BM in ages? That sort of happened to me. I think my poor ‘rear end’ was so used to looseness, that a few solid ones started to make me bleed a bit? I think that’s possible, no? It just makes sense. It was a brighter red blood, too…

    Maybe that’s a bit of denial on my part, but when it happened, I upped the L-glut anyway, and it disappeared again…but now that I think about it, like I said above, maybe the firmness ‘tore’ a bit as it came out? Ewww..I know…sorry to be so graphic, but don’t you think that could happen? I mean, I was loose for 14 years, and then all of a sudden, things got firmer, bigger, and normal!

    Maybe out anatomy wasn’t prepared for that!

  19. bev June 25, 2013 at 8:42 am #

    BTW, don’t get preoccupied with that bit of bleeding. I am so glad I didn’t overly stress about it, because it did go away again. It doesn’t have to mean anything, Ann…

  20. Ann June 25, 2013 at 8:53 am #

    The blood this morning was really bright red too. Not the real dark I was having before the Ultimate Flora. Just came across a new support group called Girls-with-Guts, have you heard of it?

  21. bev June 25, 2013 at 10:03 am #

    Aha! See, I think the blood is different! Hope that takes the worry away. Soldier on, Ann. Keep taking the good stuff and it will get you even right-er!! (Another new word)

    I have not heard og girls-with-guts…sounds really cool…

  22. Ann June 26, 2013 at 6:26 am #

    Good Morning Bev. I really felt like crap yesterday but think the storm has calmed. I feel much better today. I took my probiotic with coffee on Monday and Tuesday, I am not sure if that had anything to do with feeling crappy or not. Today I just took the capsule with water and L-Glutamine and waited almost three hours before eating oatmeal. I am feeling much better and energetic. I can’t believe how much difference one day can make but it’s not over yet. Onward and Upward!

    • bev June 26, 2013 at 6:43 am #

      Good morning to you!

      Mmmm…I have never taken the probiotic with coffee. Only water, because I don’t even have my coffee until after I exercise, which is almost two hours later.

      It’s kinda silly how something so small can make a difference…but maybe it was the coffee. Maybe it somehow interfered with the way the probiotic broke down, like perhaps it dissolved it sooner than it took to get to your colon?

      We shall see, I guess. Try and keep taking it only with water. That should tell the tale…

  23. Ally July 2, 2013 at 2:44 pm #

    Siobhan I am taking Natures Plus GI Natural Digestive Wellness tablets 3 times per day but go into any health shop and ask for probiotics/enzymes, there is loads to choose from and they certainly wont do any harm!! Ally

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