Ulcerative Colitis Tips


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New To SCD – Feeling Worse

Ok so here is my lovely UC story – I am a 23 year old female and I’ve had Ulcerative Colitis for about a year.

I was diagnosed in February 2011 after a colonoscopy following 2 months of trying to figure out what virus or bacterial infection was plaguing my colon. I had blood and constant diarrhea that both showed up slowly (of course back then when I thought it was bad I now realize was nothing compared to what it would become) and for someone who had never really had a health issue the fact that there was blood in the toilet was traumatic enough that I tried to ignore it.
Anyhow, once I was diagnosed I was started on Colazol – which did ABSOLUTELY NOTHING.

 

Follow up appointment I was stepped up to Rowasa enemas which at the time were a God-send. They cleared up the blood and pain basically overnight, and they were able to keep me in check for a couple of months. Still had loose stools but other than that I felt relatively normal.
Unfortunately, my “time of the month” sent me into a mini-flare each month and after a few months, one of those mini-flares turned into a true flare which sent me back to the doctor. I was stepped up to a stronger oral medication (Apriso) which I still do not think made any sense considering that drug (I now know) is for the maintenance of UC that is in remission which I clearly was not. Logically, this drug did nothing to help me, and I went back to the doctor again. This time he put me on prednisone 40mg starting dose and tapered after my symptoms went away. As advertised, the pred worked great since it was the first time I’d ever had it. I felt better within a couple of days and instantly started my taper by 5mg a day as the doctor had told me.

Next speed bump…2 weeks after coming off the prednisone I went into the worst flare I’d had – pain ALL day every day, urgency, blood, cramping…once again this was induced by my lady cycle (grrrr!).

That was in July and I have been in a flare ever since then. I went back on prednisone which did nothing – so the doctor added Cortisone enemas, the combined side effects of which made me more miserable than the UC itself. I took my situation into my own hands and dropped both medications after only 2 weeks…I was too miserable from the swelling, insomnia, combined with the flare that I was getting NO relief from.
Since then, I’ve been dealing with the UC as best I can, sticking my head in a hole to not have to deal with potential of Remicade and surgery.
Recently I decided to attempt the SCD diet, desperately hoping for some relief. The first time around (2 weeks ago) I made the mistake of starting and eating ALL the allowable foods which only left me feeling MUCH worse after a week from such a massive diet change so I quit and decided to try again the correct way. Well I’m now 2 days into the intro diet and have gone from VERY watery diarrhea (which has been my “normal” for several months) to straight liquid. Most of the stabbing pain and cramping has gone away but I’m definitely not seeing the potential for anything hard or close to formed. And obviously I still have no energy because I’m starving myself essentially – I despise eating only meat which is essentially what the intro diet consists of – and the soup makes me sick just thinking about it. Basically, I feel much more discouraged 2 days into the diet that I did when I was at least eating well but feeling poorly…
I read Adam’s story and so many others that have seen results so quickly even when flaring that I feel like giving up already.

Anybody have success with SCD after initially feeling worse?

Thanks to anyone who made it through that novel – here’s hoping we all see relief soon!

written by “Red”

submitted in the Colitis Venting Area




SCD

15 Responses to New To SCD – Feeling Worse

  1. Jo December 17, 2011 at 5:28 pm #

    Hi Red,
    You’ve got to be soooo patient. I was not a good girl and after the intro, went straight into all legals – so much fruit it was silly. It definitely slows the healing process down. I am still not very disciplined in that respect, and while I still have a way to go, I’m making progress slowly slowly, but definitely getting somewhere.

    Initially with the yogurt, I was using a starter that had been legal, but then I found out through the Yahoo SCD thread I follow, that the ingredients had changed and was no longer legal. So, I’ve been using another legal starter and it’s definitely helping.

    I’ve been on the diet since the start of August, and I’m down to 1-3 BMs, and not quite as formed as I’d like, but getting there. Happily the blood has pretty much gone, and I’m feeling more or less ‘normal’, ie. my iron levels must be back to normal as I have lots of energy. People keep commenting on how well I’m looking too.

    I really like the diet, although I do miss my auntie Margaret’s mince pies at Christmas (pastry to die for!), and a yorkshire pudding, and a cheeky roast potato. I’m in the UK, in case you’re wondering.

    I’m happy to stay on the diet for the forseeable future, as life was a bit miserable before, and for me, the drugs did nothing!

    • Red December 19, 2011 at 7:46 am #

      Hi Jo, Thanks for your reply! I did the same thing the first time I started the diet – only worse – I went straight into eating everything legal and that made me more sick than before the diet! So I have recently re-started the diet and am trying my best to do it correctly. Being that it’s been just over a week – the only improvement I can see so far is a lack of pain. I had been having a lot of cramping and burning pains which the diet has been able to pretty much do away with…but as far as BMs go I have a LOOOONG way to go. I’m not giving up yet I just needed to hear that it doesn’t always work in the first few days and you magically feel all better.
      I’m still hoping this works though because medication has done nothing lately and I am less than excited to have surgery!

      • Jo December 19, 2011 at 9:58 am #

        Hey Red,
        I’m only just getting to the remission stage and it’s been 4 months. I’m still not perfect either. But it’s such an improvement that I’m gonna stick with the diet. Hang in there! For me, there was no alternative. The medication – mesalazine – wasn’t working and I didn’t want steriods. Loads of help online. Adam from IHaveUC was great – thanks Adam!

        Best,
        Jo

        • Red December 19, 2011 at 11:28 am #

          Wow – four months is a long time. I intend to give it a good long while before I determine whether or not I think its working for me. I’m in such bad shape at this point it will understandably take a while to start taking effect. Medications also did nothing for me in the past several months, and I get tired of feeling like a guinea pig for doctors to poke at :) Adam has been great at answering questions for sure! Very much appreciating the site at this point!

          • George in Napa December 21, 2011 at 1:17 am #

            Red, WOW was also my reaction when I read Jo’s comment about it taking “4 months” to get to the remission stage. I’m at 3 months on SCD and have been frustrated because I haven’t seen some sort of major improvement already. It has been hard for me to judge how effective SCD has been for me since I started on 40 mg of prednisone the same day that I started the diet. I assume that most of the improvement that I have felt the past 3 months has been because of the pred not SCD. When I got to 3 mg per day on the pred, I saw and felt the early stages of a flare. I was hoping that the diet would have stopped that from happening. I went off SCD for a few days and started to feel worse. I am now about 95% back on it and starting to feel better.

            Jo, thanks for letting us know that it doesn’t “work overnight”. I really had expected a major improvement after a month or two. I am going to try to stick with SCD for a while longer and see how it goes. (>:

          • Jo December 22, 2011 at 1:29 pm #

            Red & George – definitely stick with it! It’s tiny milimeters of improvement by the week. I also had at least one relapse in that time. But it is worth it I think. Have you made the yogurt? It’s fantastic and a real healer. Make sure you get a legal starter for all the best probiotics. I add a little honey, fresh blueberries and a ripe banana for the most delicious breakfast or pudding.

            Oh, and what has been really helpful is that I’ve joined a Yahoo SCD group here in the UK. I know there are others in the states. With this, I get fed really great info on the diet and ideas for recipes every day. Any questions, just send an email to the group and you get an answer within a few hours. It’s so helpful. Just like this site is. There are people who have been on the diet for decades, so know their stuff. With the diet, you need to cook a lot more, but hey, that’s a good thing – improve your skills (if like me, you need to).

            Good luck to you both!

  2. darolyn December 18, 2011 at 7:18 am #

    Hi Red, I can feel your agony. And its very easy to get discouraged. The diet works for most, but sometimes you need more. I am not a pill pusher, but if its that or surgery, i will take the pills. Maybe theres something else going on, an infection of somekind. Prednisone always takes a long time to work for me, like 4-6 weeks, and it takes even longer for your guts to heal. Try to be patient. There are some good scd recipe sites out there too. Good luck and hope you feel better soon.

    • Red December 19, 2011 at 11:19 am #

      Darolyn – Thanks for your reply. I understand your take on the pills vs surgery for sure. Unfortunately I have responded TERRIBLY to so many different medications that I am pretty much terrified to touch them. Prednisone gave me insomnia and I literally was slightly crazy for the entire time I was taking the pills…it was like I lost my mind and had to be constantly doing something or thinking about something. Cort enemas made me swell all over to the point that I had trouble walking and moving and made me gain 11 pounds in 7 days. Even the Apriso I was on I discovered was giving me chronic headaches everyday for the last 6 weeks I was on it. And none of them gave any relief from the actual symptoms, so until I just can’t handle it I am off the meds for now…I’m sure my doctor would throw a fit but when it comes to UC it seems like no one knows our body better than us.

      Hoping this diet is the trick. It is hard to stick to but if it will work I will definitely give it a chance.

  3. Sherry December 19, 2011 at 11:06 am #

    Red – I hope you start feeling better soon. The SCD works for many, but not for all, and for some it takes time. I have been on it for ten years, and I am not on medication. I have taken a short round of Entocort, when I had a recurrence (not really following the diet at the time). My point in saying that is, medication can help too.

    My advice would be to find a few SCD legal foods (homemade soup, ground beef, cooked veggies maybe) that work for you and stick with those until you start feeling better. Some of the foods on SCD can be very harsh. I didn’t use almond flour for months after I started the diet, and I was already in remission at that time. Nuts, raw veggies, and fruits can be too harsh if you have a lot of inflammation.

    Good luck.

    • Red December 19, 2011 at 11:32 am #

      Hi Sherry – I am hoping that healing comes soon, but I also understand that my system is all kinds of messed up right now and this will be a process for sure.

      After being on the diet for so long – do you feel fairly good most of the time? I just wonder what kind of lifestyle I can expect after all of this is underway. Right now I am just tired of being sick and exhausted every single day.

      For now I am on ground beef, homemade applesauce and cooked apples/pears, and cooked veggies. None of those seem to cause a reaction so I am sticking to the limited diet until I see some improvement. I know I have a lot of inflammation due to the pain and blood I see so much of so healing is going to take time.

      Thanks for your reply!

      • Sherry December 19, 2011 at 4:04 pm #

        Red – that sounds good on your eating plan. Actually I feel good pretty much all of the time. The only times I don’t is when I go off the diet, so I’ve resigned myself to following it forever, with just a few add ins, that I’ve been able to tolerate.

        It’s great to be at this point. I had surgery for Crohn’s, but some symptoms soon appeared. Even though the doctor told me it was too soon for a full blown recurrence, the symptoms went away as soon as I started the diet.

        When I was first sick, I couldn’t hardly eat anything. I was malnourished and could barely stay awake during the day. Everything caused upset stomach and pain. I’m glad to be past that, and I hope to stay that way. It’s a long road, but it is possible to get better. It’s true SCD doesn’t work for everyone, but it seems some kind of dietary change, whether it be SCD or other types of modifications has been helpful for most.

  4. Stephen Swift January 25, 2012 at 12:19 pm #

    Anybody have success with SCD after initially feeling worse?

    In The Vicious Cycle it says that it’s normal to initially feel worse because of the bacteria die off.

    I don’t remember my personal experiences myself but I don’t think I felt way worse like some people do simply because my crohns wasn’t as severe as many people’s as I had already started restricting my diet somewhat.

    My colonoscopy came back mostly clear when I had one 4 months into the diet, march 2010 and completely clear marchish 2011 after the previous 4 years showing inflammation. So it certainly has done something for me. But I still have some mouth sores and today I had severe stomach upset in the morning.

    Just give it a try, I’d be surprised if it didn’t help.

  5. Daniel January 25, 2013 at 11:40 am #

    i’ve been on remission for many years with some short flares.

    I take mezavent and psyllium husk(my idea, not doctor’s one)

    The psyllium was the most effective thing i’ve tried. Keeping it formed and help to reduce bathroom sessions a lot.

    I’m surprise that i don’t see anyone here talking about that…

    But now i have bad flare for 1 month, not even the psyllium work, and decided to begin the scd.

    For me too it getting worse each day for a week now today have just a little bit of blood…but now 8 times to bathroom at 12:00.

    I really hope that scd will work, I’m a lineman and very difficult to access a toilet when in the phone post.

    And I think just like many of you that medicine dont really know what to do with us and try anything

  6. Paige July 31, 2013 at 4:45 am #

    Hi! I just started the intro diet yesterday and since I have had gas and very watery stool… Worried it isn’t working. I don’t have any a access to DCCC so I am waiting on my yogurt to finish up so I can drop it. Can I drip it while it is hot? I really hope this diet works… Chicken soup for breakfast it is… :( also, about the fruit juice. I bought welch’s 100% grape and I’m worried… I never ever drink juice because it is so much sugar and we eat low glycemic for the most part… Is that juice really okay for this diet? Aren’t the bacteria just eating all the sugar?

  7. Colleen July 31, 2013 at 10:15 pm #

    Hi Paige, it’s definitely common to feel worse at first and then start to feel better. It is part of the die off process happening, all those bad bacteria dying. They don’t go down without a fight. But once that passes, you should start feeling better. I didn’t have access to DCCC either and it’s definitely not necessary. The intro can be hard because you’re eating so little and feel so weak, but it’s a really necessary step. Don’t overdo it on the yogurt either at first–or the honey. Just take things VERY slowly. It’s the best way to go. I has to restart SCD a few times because I wasn’t getting it right, but it’s working for me now. I don’t think the juice is necessary either. But then maybe it feels like you have so little to eat! The soup is really the key–and remember the intro is only 5 days max. Puree any veggies as your move forward after the intro. Definitely check out http://pecanbread.com/p/how/stages.html It’s a very useful resource, and their SCD stages are great. Gotschall doesn’t really go into much detail on the steps or the “how to” of being successful with the diet in her book. But there is a wealth of information online from people who have been through it and healed as a result.

    Good luck and don’t get discouraged! It’s something to be committed to for the long haul–so don’t expect miracles overnight, but keep a journal of your symptoms and as they improve you’ll see you’re heading in the right direction. Best.

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