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Living With Colitis in Cape Town South Africa

Introduction:

I am a 39 year old female classical singer and singing teacher. Also studying part-time (a BA Psychology). I live in Cape Town, South Africa.

Some more about me:

I am a family person. When feeling out of sorts my nieces and nephew brighten my day. I’m very close to my sister, brother, mom and dad. I love lying by a pool with a good book. In fact, I wouldn’t mind doing that for the rest of my life; I’m sure my ulcerative colitis would be cured!

Colitis Symptoms:

I am currently mostly in remission but sometimes experience a ”pulling feeling”, like pressure on my bladder with a need to pee often… when this happens I know I am flaring slightly but not badly enough for obvious symptoms to present themselves. It’s a state of discomfort which drives me mildly insane…!

Cape Town Colitis

Hi everyone, happy new year! I’ve had UC for 12 years. Initially I was diagnosed with proctitis and felt reassured that my Ulcerative Colitis was limited. Eventually, 2 years ago, my UC travelled up :-( I went on a clinical trial, testing the use of Pentasa in a very high dose and became very ill, losing a lot of weight and resulting in hospitalisation for a a week. I was put onto Methotrexate injections and went into remission for about 9 months. Then I flared. I must tell you, I tried the Prednisone thing a couple of times… I lasted at most – a month. I’m really not sure how others persevere on it. I felt so out of it and on edge that I found it difficult to get on with my life. I HATE that drug. I told my doctor I wanted Revellex (Infliximab). I had to wait for my medical aid scheme to be upgraded and then for them to approve it which took a few months. So, I go for the infusion every 2 months and inject myself with methotrexate once a week.

I have come to terms with having UC, for the most part. There are days when I feel sorry for myself and really angry that I have this disease that will never go away. I feel fatigued from the disease and from the drugs and that makes life difficult at times but I try to be positive. I am a member of a facebook support group for IBD, started by a woman in Johannesburg and we have meetings every 3 months or so in our various cities. The group is open to anyone in the world with IBD. We also have a small BBM group which is very supportive. I believe groups, such as the one here, are vital to helping people with UC or Crohns deal with the conditions because we can feel so alone, helpless and despairing. Knowing that there are millions of others out there in the world going through similar hardships and being on a support group and being able to share stories, give and receive support and information has helped me tremendously. I am lucky that my family is very supportive and my doctor and his team are excellent.

Biggest Pet UC-related Hate: Colonoscopies! Oh my word…. I’m not sure what you drink in other parts of the world but Kleenprep has to be The Worst bowel cleanser known to man. I gag on the first sip but somehow manage to get through drinking it. The actual colonoscopy…. need I say anything? The words loss of dignity, humiliation, fear and pain come to mind. I normally force my doc to up the meds a little way into the procedure as it’s painful, then it’s ok and we have some ridiculous chit-chat while watching a 3D movies of my insides.

Colitis Medications:

I’m on methotrexate and Revellex (infliximab) I feel horrible once a week from the methotrexate… cloudy headed, nauseous, headachy and tired. I really wish I could go off it! It affects my quality of life but the alternative (flaring) is worse. I take Omega 3 capsules and folic acid.

written by Sunny Cape

submitted in the colitis venting area





20 Responses to “Living With Colitis in Cape Town South Africa”

  1. stephanieJanuary 13, 2013 at 2:34 pm #

    I feel your pain! Colonoscopies are the worst, the last time I had “Conscious Sedation” for the first time and was totally aware of what was happening. I grabbed the bed rail and the nurse said “just breathe”! You get on the table and just breathe through this lady! Preps get me too, it is coming time for another one because if the Humira does not work they are going to want to LOOK at things again.
    Have you tried probiotics yet? It really helps some people with UC. I hope you get to feeling better but you are entitled to vent, having this does really suck. Others that don’t have it just don’t have a clue to what we have to go through sometimes.

  2. bevJanuary 13, 2013 at 2:53 pm #

    I only take probiotics now…no more meds for me. I think that the worst thing about having UC is the meds used to treat it…and the colonoscopy prep bites pretty bad too.

    For some reason, unbeknownst to me, probiotics have ‘cured’ my particular case of UC, as much as one can be cured. I know the UC is still there, but all of the symptoms are gone…forever, hopefully.

    I think now that each of us got this condition due to different reasons…antibiotics, accutane or other UC causing drugs, food sensitivities, etc, ect, and that is why it is so difficult to treat. We all seem to be so different in how we got UC and how we respond to treatments. It is definitely NOT one size fits all.

    I just wish we did not have this condition for life. There has to be a way to get rid of it!

    :)

  3. KimberlyHI
    KimberlyJanuary 14, 2013 at 12:19 am #

    Wow I have never had a colonoscopy where I was awake! That must be awful, I have had 4 and have been completely out for each one. The prep…awful, the worst part in my opinion. I am getting infusions once every 2 months too, since september. Have you been on the infusions long? I am wondering how the infusions will be after a few months. I am taking Imuran too, I have not heard of the shot you give yourself, but I hate my imuran, the side effects are awful. But we are trying to get me on just the infusions, do you flare if you just do the infusions without your weekly shot? I am a little worried that may happen with me once I stop imuran, but we’ll see. Hope you are feeling well!

  4. bevJanuary 15, 2013 at 7:17 am #

    Thank you Stephanie, Bev and Kimberly for your replies. I so appreciate them :-) My name is Bev too, by the way ;-) Just wary of putting my name out there in cyberspace – so much of myself is out there already what with facebook, twitter etc…! I can be Bev L to avoid confusion.

    Stephanie, good luck for the colonoscopy. I hope it’s not too bad… Yes, the nurses often haven’t had a colonoscopy themselves so they really don’t know how bad it is. The research lady who works with my GI always says: “Hell No!” when I suggest she has one. I have bought some probiotics today! One GI gave a lecture and said that they are very dangerous for people with IBD so I stopped taking them but subsequently, I have heard that so many of us take them and one woman with Crohns is in remission (for years) on Probiotics as well as L-Glutamine and OMega 3 oil. So I’m going to try all these things.

    Bev, how amazing that you take only probiotics!! I hope to be in that position one day… I hope it lasts you forever! Yep, one size definitely doesn’t fit all. I’m not sure how or why I even got UC… I got very constipated once – for about 4 days – and sometimes I think that brought it on but looking back I’ve always had an irritable tummy, as if it was always there but one day just manifested differently.

    Kimberly, how are you feeling on the infusions? My doc has not allowed me to go off the injection unfortunately. I wish I could! I can imagine how horrible you feel. Do you take Imuran daily? What is it – like Asacol/Pentasa? If you flare once off the Imuran, your doc could put you back on it but if it’s making you feel so bad then maybe it’s good to see how things go without it. You are very lucky you are put under when having a colonoscopy !! I wish! But my doc does it in his rooms so they need you to go home afterwards! :-)

    Thanks again for responding guys, it’s nice to be on a site is purely for UC alone, rather than the usual IBD – Crohns and UC. I sometimes feel we are the less important of the 2 as Crohns people suffer so much – but we suffer too. x

    • bevJanuary 15, 2013 at 3:36 pm #

      Hi Bev!

      I know!! I can’t really believe it myself about the probiotics! I am thrilled at the nmoment and I hope it lasts forever as well.

      Just remember…when you say your doctor has not yet ‘allowed’ you to go off the infusions…YOU are the boss of you…not your doctor. Doctors don’t always know best, unfortunately. Go with your gut and how YOU are feeling. If you think the infusion are good for you, and are working for you, then continue. If you don’t want to continue…DON’T!

      YOU have ALL the power my friend!! Believe that!!

      Bev C
      :)

    • KimberlyHI
      KimberlyJanuary 16, 2013 at 9:18 pm #

      Bev, I am a lot better now after remicade infusions and Imuran, in September I was in realy bad shape, but a few days after I started the remicade and Imuran I started going back to normal. It was a huge relief. I don’t want to take them forev er though. Imuran is basically a pill form of remicade in that they both suppress the immune system, and I take 2 pills a day. The doctors put me on both because I was in such bad shape and they say with both I am less likely to reject remicade infusions. So UC wise I am doing really well, it’s just the side effects now I am dealing with. The side effects are not as bad as UC of course but they are still annoying! Like my hair falling out and my face breaking out and feeling nauseous all the time. My doctor originally said both meds for one year, then maybe just one or the other long term. But now we are getting me off Imuran slowly. Then I’m going to try a diet change and some supplements and probiotics like Bev C and many others take. I do take a probiotic now but it’s the store bought 1.5 billion cells one, where as Bev and others I think take 50 billion cells. My GI doctor had actually recommended the probiotic.
      I have to say since I came to this site which i think was in October or so, it has been very helpful. It is comforting and encouraging. I have a super supportive family and husband, but it is hard to explain and talk about this stuff to them, and they just simply don’t understand since they don’t have it. On the site people relate and many are worse off than I am so it’s been an eye opener big time.

  5. bevJanuary 18, 2013 at 2:44 pm #

    Bev, which probiotic do you use? I bought a solgar product (optional to refrigerate)and says multi-billion but no exact number.I’m thinking I should take what you take! What works for one Bev will surely work for another! :-) Kimberly, Imuran sounds pretty much like Methotrexate that i’m on – also an immunosuppresant. It’s a form of chemo so I know what you mean about feeling yuck! Anyway, here’s to a cure one day! X

    • bevJanuary 18, 2013 at 3:47 pm #

      Hi again bev!

      The probiotic that I use is called ULTIMATE FLIORA CRITICAL CARE by RENEWLIFE…however, if you can’t get that particular one, I’m sure any one with at least 50 billion strains will do the same thing. Mine is 50 billion, but more is probably even better, and they are out there. That VSL3 apparently has 100 billion or more, I’ve heard.

      When you take probiotics really seems to matter, I’ve found. I take one capsule, first thing in the morning when I get up, with water. On a completely empty stomach. Then, I exercise, so I don’t eat for at least an hour after that. A pharmacist once told me that when we eat, we produce stomach acid, which changes our digestion process. Interesting, huh? So, digesting the probiotic could perhaps be changed if you eat too soon, than if you don’t eat right away, I am assuming? Some people need to eat right away in the morning, so if I was one of those people, I would likely get up at 3 or 4 am, and take the probiotic, and then go back to bed for a few hours. That would work!

      All the best,
      Bev
      :)

    • bevJanuary 18, 2013 at 3:48 pm #

      Sorry for the error in the probiotic name!

      It is called ULTIMATE FLORA CRITICAL CARE by RENEWLIFE.

  6. PhilippaJanuary 20, 2013 at 2:53 pm #

    Hi There
    I’m a 32 year old female living in JHB. I have had UC for roughly 2 years and am currently flaring badly. I am on pentasa 4- 6 tablets a day and Asacol sups, but I haven’t taken for a good few months until today. I would love to join your facebook group as well as your bbm suppoprt group. I defintily need to see my GI asap as I have never had a flar like this awell My Diet needs a total over haul. I am also a mom to a 2 and half year old which makes it hard as you can’t just run to the loo when you out as easily as you would like and I’m trying for number 2. The thought of having UC while preg and it flares is scarying me to death.
    I really would love to chat some more to you Bev L *s I also was diagnosed with proctits and was told the likely hood of it traveling is slim??
    As for colonoscopys and prep. They are the worst thing ever and I avoid it at all costs.
    I look forward to chatting.
    Philippa

  7. sunny capeJanuary 21, 2013 at 2:11 am #

    Hi Philippa

    Nice to meet another S.African on this site! I’m really sorry to hear you’re flaring so badly :-( Just to ask you, have Pentasa and Asacol helped you in the past? They help many UC sufferers but in my case Pentasa made me go downhill fast. It exacerbated my symptoms causing me to have a very bad flare. (I’m not 100% sure but I suspect my UC travelled as a result of this drug but it could also have been a result of neglect from my doctor who I left. If these 2 drugs don’t help you, there are other drugs available. I went onto cortisone but it didn’t help me and I don’t believe in cortisone as it doesn’t help maintain remission for very long.

    I feel for you, having to deal with your UC while looking after a baby – that cannot be easy at all.
    Our facebook group in S.A is called: S.A. IBD Support Group – Crohns Disease & Ulcerative Colitis. If you like you can find me under Bev Lorraine and send a friend request. You’ll see the group on my page. It was started by a woman in Jhb – Harelle Tucker Isaacs. She’s been amazing – has started groups in Jhb, Cape Town and Durban. There’s a good dietician in our group, Gayle Landau – she is based in jhb and would be able to help you with your diet or recommend someone in your area.

    As for UC traveling – I think each individual case is different. Maybe your UC won’t travel which would be great. Mine remained limited (proctitis) for about 8 or 9 years.

    I really hope it comes under control. I would have a check-up if the Pentasa/Asacol doesn’t help. Colonoscopies are horrible but we need them – they are vital to see what’s going on. Or maybe you could just have the Flexible Sigmoidoscopy – perhaps that would be enough to see the state of your UC.

    Are you taking any supplements? A good probiotic? If you read some of the stories here you’ll see some great success on various natural supplements. I’m not saying don’t take your meds but it’s worthwhile looking into what else is out there. I’ve just started taking Olive Oil – 1 tablespoon 3x a day (a guy on this site swears by it and I figure it can’t hurt.) I’ve bought a good probiotic and will be buying L-Glutamine as well. Look at some of the threads – it really gives a person hope that we can help ourselves as well. The drugs have been amazing for me (Revellex) but they also interfere with quality of life so I’m always open to other things – who knows, maybe one day I’ll be able to wean myself off the drugs – methotrexate especially – it makes me feel ill.

    Thinking of you – you’ll get through this.
    xBevL

    • Siphiwe NgidiOctober 1, 2013 at 6:01 am #

      There is always an altenative. I had piles in 2003 and went through a surgery. Piles were souhted out for tree years, in 2006 I had onother operation for the same problem. Fortunately, last year I was introduced to Edmark Liquid Chlorophyl, a natural herd that has a searching element. Now I am free.

  8. sunny capeJanuary 21, 2013 at 2:22 am #

    OH – PS! Once you’re on the SA site you can scan the blackberry code and become part of our BB group or send a message to Harelle – she will join you up. xx

  9. TresorMarch 6, 2013 at 7:01 am #

    Hi,
    Can you kindly add me in your bbm patients support group so i can get more information about the crohn desease and where it can be treated here in south africa. Here is my pin: 28128A25

    Thank you

  10. sunny capeMarch 6, 2013 at 1:38 pm #

    Hi Tresor

    Please join our facebook group first in order to become a member of the bbm group as I don’t have authority to put people on the bbm group list. You can befriend me on Beverley Lorraine on facebook and you will see the group on the side of my page: S.A IBD Support Group – Crohns & Ulcerative Colitis. You can get lots of information about Crohns in South Africa on this facebook page. If you have a problem getting on it, please let me know.

    Kindest Regards
    Bev

  11. sunny capeMarch 6, 2013 at 1:43 pm #

    Since I’m on here now, just a quick update: I’ve been taking my probiotic and L-Glutamine daily and seems much better. Question: Does anyone feel constipated from the probiotic? I am using Multi billion Dophilus or something like that. Will still look for your one, Bev. xx

    • bevMarch 6, 2013 at 1:52 pm #

      No, sunny cape, I can’t say as I’ve EVER been constipated in my whole life…no kidding! Even after I had my appendix out in the middle of the night years ago, the next morning the nurses were shocked, to say the least, that I had to ‘go’ first thing the next morning. Needless to say, I was relesaed from hospital alot faster than most, as most cannot go after anesthesia, or tylenol 3s!

      The probiotic did not do that to me, but perhaps it is a good sign…that things are healing and slowing down?

      :)

  12. sunny capeMarch 8, 2013 at 7:30 am #

    Thanks for the reply Bev, yes, I think things have slowed down. My stools are more formed and solid since the probiotic, just takes a while sometimes to ‘go.’ I definitely go to the loo less, like today I haven’t gone yet and it’s 4.30pm. Can’t believe that maybe I need a little more fibre? :-) What is the benefit of a pre-biotic. Would you recommend it? Hope you’re doing well :-)xx

  13. bevMarch 8, 2013 at 9:32 am #

    Hi sunny,

    I have no idea about pre biotics or the benefits of them. You’ll have to ask an expert! I have heard of them on this site, tho, but that’s about it.

    I don’t know about adding more fiber…I’ve read on this site that adding fiber causes some UCers more problems, like bleeding and looseness all over again. I would just let your body do it’s natural thing…you will go eventually.

    Cheers
    :)

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