The Urgency Is So Frustrating

Introduction:

I’m a 42 y.o. doc diagnosed with UC 3 years ago. I’ve definitely been frustrated with the healthcare system – and have never shared my story before.

My Colitis Experience:

Hi everyone. I’ve never shared my story…and just want, finally, to share it.

I was in complete denial in the summer of 2009. I was going 20-40x a day…and finally, once I saw lots of blood…couldn’t deny it any longer….I got a colonoscopy – pancolitis. I remained in denial – and tried an antibiotic, xifaxin – for 6 months. Result – total disaster – became completely incontinent – weight loss….etc. Finally, I hit rock bottom, and gave up, went on a course of prednisone and started taking Lialda. The flare finally stopped, but…. my rectum just seemed completely shot. I tried 6 months of canasa supp. and even tried some steroid foams. Is that what everyone else experiences? Went to see multiple GI docs – and they all said that the rectum is very hard to heal – and that this may be my baseline. Those rectal spasms, known as tenesmus – so evil. Like everyone else, my mornings are rough…. The appetite battles – queasy one moment, starving the next…. My diet: bananas, chicken, shrimp, tuna, cereal, bagels, spinach, carrots, s quash….and that’s it.. no kidding.
Does anyone else have those issues…it makes the thought of traveling difficult to say the least. I also want to get more calcium in my diet, but maybe I just have to bite the bullet and start adding some yogurt to my diet slowly? I have been eating a teaspoon of Parmesan cheese every day or so.. Oh, how i miss eating cheese..wow! I guess, though I may be in remission at times, I’ve never felt back to normal. I must admit, its wonderful when you realize that you have forgotten for a few hours that you have UC – what a gift those moments are. I know I’m still one of the lucky ones, that it could be so much worse. Just wish I had more than 30 seconds – definitely not ideal when you are stuck in a plane during take-off.

Every morning I take 2 or 3 Lialda, an Align probiotic, and a Pearles IC probiotic, and an essential multivitamin. I’ve done that for a few years now…. and still the ups and downs…

Thanks for letting me share.

I am ever-searching for a way to fix this –

and the instant I find something that truly improves things –

I look forward to sharing it with you all!

Regards,

T

submitted in the colitis venting area




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urgency

43 Responses to The Urgency Is So Frustrating

  1. Melissa Lawler January 28, 2012 at 4:54 pm #

    I understand. My doc gave up on me and then I lost my insurance. I have not received any treatment since August. I swing between diarrhea and bloody diarrhea. Diet does not affect me. It does not seems to matter what I do or do not eat, I am still sick. I have lost about 60 lbs (that is probably the bright side!). I am beyond frustrated with the health care and insurance industries.

    Find us a cure!

    • Doc with UC January 29, 2012 at 5:05 am #

      Thank you for your comment. I’m really trying to crack this problem. I’ve been testing out prebiotics, and most recently, I’m testing out a Fluoride-free diet. So sorry what you’re going through.

      • Melissa Lawler January 29, 2012 at 4:50 pm #

        It sucks for anyone that has it. I am interested in what you discover!

  2. Amos Wilkinson January 28, 2012 at 5:24 pm #

    Thanks for sharing your story Doc. It really resonated with me.

  3. Lori Bowser January 28, 2012 at 6:37 pm #

    Hi Doc…..right there with ya! I have had uc for 24 years now……years that have been full of ups and downs….I never had a break until a few years back, and believe it or not, I was in remission for 2 whole years! It was wonderful! Since then, I usually have at least 6 flare ups yearly…..I take Asascol….mostly take a prednisone taper for the more severe flareups, along with Rowasa enemas at night. I go for yearly colonoscopies and always in the back of my mind is the dreaded thought of colon ca. I also work in the healthcare field, and fortunately have easy access to bathrooms!!! Hang in there….don’t give up and never let it get you down…..I live my life as I want to…..good luck…..Lori

    • Doc with UC January 29, 2012 at 5:09 am #

      Lori,

      Thanks so much for your comment. To say I’m sorry you’ve had to go through this for 24 years would be a massive understatement. I do try hard to not let it get me down…but, as you know…it’s not easy to do… sometimes, I just want to yell out (to my colon) “really? really?….why are you so angry?”

    • Chris January 29, 2012 at 11:59 am #

      I hear you! I was diagnosed with UC 29 1/2 years ago. I have been waiting for the day to find an article from a physician who has IBD. Sorry you have to suffer too, I am praying that you find the cure! Lori, I can relate to you, as we have had this disease over 20 years, it’s a lot of ups and downs. I am curious, does anyone experience a lot of cramping, even if stools are formed? I hope 2012 is the year for the cure :)

      • Doc with UC January 29, 2012 at 2:04 pm #

        Cramping even if stools are formed? Here’s my 2 cents on that. I hope you find this helpful…if not, I’m sorry.
        The nervous system is a very strange creature…especially when it comes to sensing pain with our internal organs… Just as some people will experience arm pain with a heart attack, the pain from our colon can manifest in many different ways. Given how UC works, I would say that when we have discomfort, we’re most often experiencing 1 of 2 major things – distention of the bowel wall and/or direct trauma to the mucosal surface of the colon (the lining of the colon). If you think about it… if you scraped your arm…as it healed…if you bumped it, even lightly…it might start bleeding again… and once healed…if there’s a scar there…it doesn’t really act exactly like normal skin again. Thus, your colon, given the years of mucosal trauma, may unfortunately have a good bit of scar tissue. On colonoscopy, when I was just diagnosed with UC, already showed “granulomatus”areas in my rectal mucosa – in other words…scarring. As the stool presses against the scarred area…we feel discomfort. (also, there may be a bit of inflammation at that area as well). You may find that the harder the stools, the worse the cramping. I hope this helps…and doesn’t cause confusion.

        • Chris January 29, 2012 at 2:34 pm #

          Thank You for your 2 cents, that makes great sense to me!(at least I know now that I am not crazy) I was told that I have IBS besides the UC, my scopes are good, but my colon spasms and cramps like crazy. It went away for a few years and has now came back. I also had my gallbladder removed this past July,so I never know what to think. What you said makes complete sense to me. I never had all of this cramping when I was first diagnosed, as years go by, it acts differently. Also foods I use to eat and not bother me, now do bother me. I will definitely ask about scar tissue at my next scope. I greatly appreciate your knowledge, thank you! Hope you feel better.

  4. Bev January 28, 2012 at 6:41 pm #

    Doc,

    Boy oh boy! You said it! So many things that you said have happened, and continue to happen to me, as well. Is this not the ‘shittiest’ disease ever? Sometimes I think I’d trade it for a different disease, as it can be so disgusting, as well. This is so difficult a disease because, as a human being, we HAVE to eat…and it takes the joy out of it.,..sorry…I just started crying at that statement…I used to love to eat…now, I’m either too nauseated to eat, or when I do eat, it’s just alot of pain, blood, and runninesss…but, I digress…

    We need a cure. Nobody should have to live like this. My poor husband wants to go camping in the spring and summer, and it’s hell for me. I know he loves it though, so I go, sometimes…and try to have a good time and try to live my life…the only good thing about winter is that I don’t have to disappoint my husband. I used to look forward to spring and summer…now I dread it. Nice, huh?

    I still think that us UC sufferers have somehow lost our good bacteria, but to the point where just taking probiotics does not cure us. These fecal enemas (I know, it sounds gross) seem to be a potential cure, so why aren’t all the specialists doing them? They cure people who get C-Difficile, and they have also cured some colitis sufferers…cheap…easy…natural…so what’s the hold up???

    Sorry for not being a bundle of sunshine. You’d never know it, but I am actually a very optomistic, glass half full sort of person. After almost 15 years, tho, with first proctitis, then moderate ulcerative colitis, and now full blown pancolitis, I get a little ‘down’ shall we say. All of the f***ing drugs I’ve put in my body all of these years. God only knows what other problems thay are causing. I’m pissed off that there is no cure for this…but there is now a pill to cure a hangover…imagine that…most of us UCers CAN’T even DRINK alcohol, and there is a cure for hangovers…it’s laughable at best, no?

    Hang in there Doc…I’m hanging in there. That straining that you feel is definitely part of this awful illness. Do you ever experience a sharp pain further up in the rectum that will even wake you out of a dead sleep? Does anyone ever get that? It feels like a knife is going in and out of the rectum? I call it an ‘ass attack’ for lack of a better term, and it can last up to a full hour. I have to get out of bed and move around because the pain is horrendous. I liken it to cancer pain. Once it has started, no amount of extra strength tylenol can help. You just have to ride it out. After it’s over, the pain just vanishes! Have you experienced that, Doc? Anybody?

    Anyway, my tirade is over. Sorry eveybody. I just get so angry sometimes.

    Good health to all, because once you’ve lost it…well…you all know…

    • Doc with UC January 29, 2012 at 5:16 am #

      Bev,

      Thank you for your comment! I completely understand what you are saying..wow. I don’t get the sharp pain you are having, but I do get get an ache…which can wake me up….it’s how I know that things will be on their way “shortly.” I’m sorry you have to go through that. It’s frustrating, but not surprising, how it seems that all our UC experiences are both very similar in many ways, but, at the same time, unique.

      • Bev January 29, 2012 at 12:47 pm #

        Doc…you are wonderful!

        Thanks for replying.

        Cheers,
        Bev:)

  5. Tiernee
    Tiernee January 29, 2012 at 9:54 am #

    Yeah, I’m still in denial. I still don’t think what I have is actually UC but I am treating it as if it is for now because the treatment works. It sounds like you are doing pretty well and just need to focus on healing your gut.

    You might consider investing in a juicer. That way you can benefit from the nutrients of a wide range of fruits and vegetables without the fiber in a form that the gut can more readily uptake and utilize. Juicing is way easier on your system than expecting inflamed tissue to digest and pick out nutrients from plant fibers. And the fibers during a flare are not beneficial. Herbal teas are good for calming your stomach/appetite issues. Chamomile I use a lot. Also, I find floating in a bathtub of warm water helps relieve any tension I might be holding in my gut and allows my innards to just float and relax…good for healing.

    I wouldn’t say you have to eat yogurt in order to get calcium. Lots of leafy greens have calcium. Juice em! Take a supplement. Some soymilks have more calcium than cow’s milk. I’ve read the reason UC’rs have trouble digesting lactose during flares is because the cells that produce lactase are damaged/inflamed/not functioning properly and are not producing viable/functioning forms of lactase, if any. It makes sense.

    There is lots of research out there on VSL#3 and colitis. Check it out. I mix unflavored into a smoothie every morning. The normal flora needs to be replenished somehow during flares. The risk of C.diff increases (and I think Adam just put out an email about C.diff). I was just recently treated for it empirically. I had a negative sample. But there can be up to five negative samples before one comes up positive (They are working on a better method. I think PCR might improve recovery but not all facilities have this methodology…I work in a lab).

    Good luck staying out of flares and healing-it takes time, frustrating yes. You are lucky in that you have many, many resources readily available to you. You’ll get it figured out. I think you’ve made a good step in reaching outside the prescribed medical world. There are many different kinds of supplemental sources out there to help draw conclusions with.

    • Doc with UC January 29, 2012 at 2:11 pm #

      Tiernee,

      Thanks so much for your comments – they are greatly appreciated. To put it simply… many believe that it’s not black or white comparing IBS and IBD – that it’s a spectrum. I have had IBS for years, no doubt…but once I started bleeding, there was no doubt that I had IBD. Thanks again!

  6. bbalanzd January 29, 2012 at 1:01 pm #

    Sorry to hear that you’ve had to join our group Doc! UC can affect anyone! I too am a Health Practitioner, and a holistic one at that! My story is unique bc I did not suffer for years, but went straight into a full blown flare that ended up in surgery with a permanent ileostomy in Feb 2011. I lived with the ostomy for 6 months before deciding that it wasn’t that bad – no pain, no meds, normal diet, full function. So I had my rectum removed in October and was told after that it was so inflamed it would not have been viable for the J pouch anyway. I guess I’m “cured.” I did have my food sensitivities tested and found that I should avoid beef, dairy, gluten and egg whites. I will never stop taking my probiotics. I think looking at all factors that affect inflammation is key: diet, supplements, sleep (most people are sleep deprived and this affects the endocrine system) and of course minimizing stress is huge (again this affects the endocrine system). UC is stressful in and of itself (not to mention all the other life stressors) and most UCers are so fearful of the thought of surgery and I get that. I just want to reassure you all that living with the “worst case scenario” has turned out to be the best thing for me. If knowing that an ileostomy is not the end of the world and this helps to ease some of the fear and stress out there, then I’m glad I shared my story.
    Best wishes to all of you.
    Bbalanzd

    • Doc with UC January 29, 2012 at 2:07 pm #

      BBalanzd,

      Thanks so much for your comment. Greatly appreciated. What you say makes a lot of sense. I’m going to add a separate comment to my post – talking about some alternative issues I’ve looked at as well. Thanks again!

  7. Doc with UC January 29, 2012 at 2:49 pm #

    Hi all,

    Given the comments thus far (thank you all), I wanted to share more information that many of you might find of value. Just let me know and I’m happy to talk more about any of the issues.

    1. I am lactose intolerant as well (not very surprising)
    2. Eating tofu (bean curd) is really rough on my system (bloating), so I unfortunately, must avoid it.

    Given those facts… If you have similar issues…and are flaring badly…and are in real need of a nutritional supplement… that doesn’t have soy or lactose… there are NOT a lot of options. I finally find one after a TON of research. It’s called EleCare. It’s not cheap, but compared to having to go to the hospital for TPN, it’s a life saver. I can talk more about it if there’s interest.

    Next issue:

    All fiber isn’t bad for us. In general, it’s the insoluble fiber (e.g., whole wheat bread) that can be “rough” on the colonic lining as compared to soluble fiber (in a banana). Of course, there may be some of you who can tolerate all fiber…and that’s awesome. If you’re not in complete remission, I see eating insoluble fiber the same as running on a sprained ankle that may not be fully healed. and of course, in a bad flare, the colon lining doesn’t like it when anything touches it. I searched hard for a good soluble fiber supplement. The colon is a muscle, and content in the colon helps it manage the peristaltic pressures well – and keeps the bloating and cramping to a minimum. I found that something called “Heather’s Tummy Fibers Acacia Fiber” is very well tolerated. It becomes a gel-like substance in the colon, and adds bulk. As with most things, start with a very small amount…and slowly go up.

    Another point:

    Kidney Stones. Given our UC we are at slightly higher risk for kidney stones. Studies show that while getting calcium in the foods we eat doesn’t increase the risk further, taking calcium supplements does…thus, if you have been getting stones, drink lots of water, and ease up on the calcium supplements – and try to get more in your diet (not easy, I know).

    Another point:

    Nitrates. There is information in the literature looking at colitis and nitrates. It’s still unclear to me…about how to use this information. I know that when I first flared I was eating a ton of dried fruits and eggs. This is challenging because you can end up deciding that there’s truly nothing to eat. If things become more clear on this, I’ll share info. For now, I think the idea of “things in moderation” is a good path to follow.

    The points that have been made about adequate sleep and stress – I think are absolutely spot on.

    Ok, last one: The rectum

    Studies are looking into the use of substance known as Withania Somnifera (aka Ashwaghanda, Indian Ginseng) – that when applied rectally, it helps greatly with inflammation. I’m keeping my eyes on this…and, hope, if the studies continue to look promising, to try it in the future.

    Take care all!!

    • Bev January 29, 2012 at 6:43 pm #

      By george, Doc, I’m (we’re all) so glad that you’re on here! I hope you don’t feel like we’re all over you like ‘flies on shit’…lol…

      Thank you for all the info on the cramping of the colon and rectum. It makes so much sense the way you’ve laid it out. Our own docs probably don’t have the time to explain that stuff to us during our appointments.

      Thank you so much, again!! Please write often!! I, for one, am hanging on your every word!

      Bev:)

      • Doc with UC January 29, 2012 at 8:35 pm #

        Hi Bev,

        Thank you again for your kind words. I have been quiet about this disease…for some time…and, I must say, Adam has created something very special with this site – that really resonates with me. (Thank you Adam!) I don’t feel like you are all over me at all – and if some of the information I can share – is felt to be of value – I couldn’t be happier. I’m more than happy to answer all questions – and share my thoughts…. just ask. I’ll be checking the site often.

        DocWithUC

  8. Shelly in Maine January 29, 2012 at 3:39 pm #

    Hey Doc,
    Thanks so much for your story. I am 43, a lifer-UC diagnosed for 28+years and symptoms as far back as I can recall and am desperately hanging on to my “innards”(except for the gallbladder I gave up a couple of years ago-probably from all the meds. and remicade which I am now allergic and interolant to pretty much all meds! Am currently on VSL#3 1800billion-2 sachets, 4 Lovaza for my Omegas and watching my diet very carefully.)
    I think it is important for us UC’ers to see it go beyond the unknown and somewhat hidden world of UC and think maybe someone in the medical field will finally understand the hell we go through. Ironically, it is a secretive disease for the most part and many people don’t even know what it is-so I often compare it to Crohn’s which many have heard of. Maybe you will be our new voice!

    What I want to share is,,,hang in there. Research and read-which I’m sure you do lots of! The SCD book is great info./science(I am not a full SCD’er). James Scala-Eating Right for a Bad Gut, and Tracie Dalessandro, Adam’s website! Keep track of everything from meds. to movements! You can start to see which foods may not be working for you. Buy a good blender! Smoothies are awesome and powerful. Probiotics-VSL#3…there is a prescription strength of 900billion live bacteria…WORK UP TO IT!! Great in smoothies with things you can handle including your soluble fiber(I use metamucil clear and natural). Try not to eat things you (well, maybe most of us) can’t pronounce! Natural ingredients and not many of them! No alcohol. Exercise and watch your stress level as you said. Watch out for gluten, preserves, etc. Go with and listen to your gut! :)
    I wish you good health. Shelly

    • Doc with UC January 29, 2012 at 8:51 pm #

      Shelly,

      Thanks so much for your comments. It’s so true… when people talk about IBD – they just often talk about Crohn’s. For example, the site, Reddit.com has a Crohn’s forum, but no UC forum. I’m really glad this site exists for all of use to share. I look forward to be an active member of the community – and hope to help you all as much as I possibly can. I miss eating strawberries so much – but I fear that its seeds could be trouble. Thank you again for your advice….and I must add, though I need more time to be sure… there really does seem to be something about spinach…..in a good way. Take care,

      DocWithUC :)

  9. Daniel January 29, 2012 at 8:53 pm #

    Everytime I eat banana’s it puts me into a flare. Doesn’t matter if they are ripe or not. :-(

    • Doc with UC January 30, 2012 at 4:41 pm #

      Hi Daniel,

      Thanks for your post – wow, I had no idea bananas could be evil like that. So sorry..but great that you know to avoid them…

      DocwithUC.

  10. Chris January 30, 2012 at 4:14 am #

    Hi everybody. My wife is 25 years old and has had UC for a few years now. We went to see the surgeon last week and she is scheduled to go under the knife on Wednesday, which is 2 days from now. Naturally, we are starting to panic a little bit. She is on 40mg of Prednisol right now, and she seems to be feeling a little better for the past week and a half or so. Remicade did nothing, Azicol did nothing. I don’t know how many other medications she has been on, but nothing is has worked and it’s all leading up to this surgery.

    So here I am searching for answers on the internet. I am going to try to get her to push off the surgery for a little while so that she an get a second opinion from the Mayo Clinic. I hope they catch something that the doctors missed, but the more I am researching, the more I am losing hope. I guess the best case is that we could reschedule the surgery there in hopes that the Mayo has better doctors and when they create the pouch it is done better than the guy in my city.

    Anyways, I guess I just wanted to throw that out there, and this column is as good as any other ones. Good luck everybody.

    Chris

    Great site and great community BTW.

    • Bev January 30, 2012 at 1:50 pm #

      Awww, Chris, I’m so sorry to hear that surgery is imminent for your wife. I’ve considered it, after almost 15 years with this stinking disease, but I am so afraid that a cure will be found, and I won’t be able to get my colon back! I know it sounds crazy, but, well, this disease can drive you there…

      It is so wonderful of you, as a spouse, to post on here. We are all here for you, and your wife. My husband feels like this is ‘my thing’ and he can’t relate. I hope he decides to jump on board with me on this site! It’s been fab!

      Cheers,
      Bev:)

    • Doc with UC January 30, 2012 at 4:40 pm #

      Hi Chris,

      Thanks very much for your post. Here is my 2 cents. Surgery be always thought of as an absolute last resort. Personally, the only reason I would consider surgery, would be if all other options had been exhausted. I can go into more detail if there is interest, but keep in mind that once someone has abdominal surgery, the abdomen is at risk for developing adhesiona, which, can result in partial or full bowel obstructions at any point in time (even years after surgery). In my journey, I went to 5 different GI docs, until I found one who I felt very comfortable with and trusted. Are there people who are very happy they had surgery, of course. There’s no right answer…but what feels right for you. Hope that helps a little bit.

      DocWithUc

  11. Regina B January 30, 2012 at 11:37 am #

    Hey there Doc!
    I cannot imagine being a physician and having to deal with UC. Working in the Xray department, I have seen so many Chron’s and UC patients go through such torture: the flares and surgeries and multiple imaging studies with obvious obstructions. My husband is the victim in our family. His sister was diagnosed about six years ago, and has managed her UC with meds. Your story of denial is so familiar to me, because I watched him downplay any similarity to her symptoms for so long. About 2.5 years ago, my husband weighed his usual 150 pounds (at six foot even, he’d always been a string bean) and we couldn’t go out to dinner unless we rushed back home to the toilet. He’d be ‘crappy’ before bed, at two am, and again around six am. Twice at work, then soon as he got home. His general energy level was low, and his personality could switch from sweetheart to devil in two seconds flat. We’d had multiple fights about him not helping out around the house and about his general bad attitude. As I’m sure you’ve experienced, his health had begun to affect his job at the steel company as well as his personal life.
    After he saw blood in his stool for the several’th time, he finally agreed to see a GI doc. Labs were drawn, routine colonoscopy scheduled. So we waited three hours to see my favorite gastroenterologist (I promise I would wait longer, he’s super!) and he gets a suspected diagnosis of UC and scripts for Prednisone and Lialda. So, I get a call the next day from their office frantically asking if my husband is home (he was driving home from work at that very minute). The office RN proceeds to tell me that Mr. B was going to need a blood transfusion (hemiglobin of 6) and an emergency colonoscopy the next day. Verdict: PanColitis with multiple ulcers, polyps, and basically paperthin tissue in his colon. Poor feller couldn’t help out around the house, since he didn’t have any energy from being sick! He was lucky he hadn’t had syncope and crashed his truck on the way home from work!
    The Prednisone and Lialda (Still 4 per day) began working miracles immediately. He got some much needed energy boost and weight gain from those drugs, which helped his attitude greatly. But you can’t stay on daily prednisone forever without drawbacks. We saw skin changes, body aches, sleep pattern changes, and very bad headaches before deciding to go another way. Dr. K put him on Remicaid infusions and oral Immuran, which he’s now been prescribed for 2 years. He looks and feels so much better!
    The past few times he’s had his infusions, he’s experienced possible anaphalaxis to the Remicaid, even with tylenol and benadryl onboard (lip swelling, then throat swelling), and we may now have to stop those. I worry every day about him, and I wonder if UC has a genetic component, whether our children will have to cope with it as well. Any time the kids get tummy trouble, it’s in the back of my mind…
    Anyhow, I just wanted to share our experience with this disease and treatment here. You are right, there aren’t many discussion groups that focus on UC. I’m thankful to be able to write about it, and to see that there is hope.

    Regina

    By the way, I know that Lialda can get pretty expensive, so if you guys don’t know about the prescription card program from their website, here’s the link. We use the card for deep discounts on the drug, which has a cost of over $600 before insurance.

    http://www.lialda.com/save-money-on-lialda.aspx

    • Doc with UC January 30, 2012 at 4:29 pm #

      Regina,

      Thanks so much for sharing your post. What a story! I must tell you that there can definitely be a genetic component to IBD. If you are interested, you can have genetic studies done. Personally, I found out a few things. I found out that I had all the genetic markers for UC as compared to Crohn’s – and that my maternal grandmother had UC. What I’ve also learned…which is fascinating, is that IBD can flip from UC to Crohn’s and vice versa within families. Hope that makes sense. My fingers are crossed for you that your kids wont have to ever experience IBD. Great Lialda advice.

      Take care!

      DocWithUC :)

  12. George in Napa January 30, 2012 at 7:50 pm #

    I would not be surprised if IBD has a genetic link. I have UC, I have a brother with Crhon’s, another brother with Irritable Bowel Syndrome and yet another brother with a gut that frequently feels like garbage. My mother had colon problems and I think my dad did also. I also have a 17 year old grandson who already has some intestinal issues. Sure does sound like a genetic link to me!
    Right now I am taking a serious look at fecal microbial transplantation. It sounds like it may be promising.
    Thank you for your posts Doc….. and thank you Adam for this site!
    Best wishes to all,

    George in Napa

    • Doc with UC January 31, 2012 at 10:02 am #

      George in Napa,

      Thanks very much for your comment. Look forward to your feedback on your experience with the fecal microbial transplantation.

      Regards,

      DocWithUC

    • Bev February 1, 2012 at 10:34 pm #

      Yes please, George in Napa…please let us all know about that procedure, which I believe, may just be the cure!! We would all appreciate it.

      Bev:)

  13. Matt February 6, 2012 at 5:27 pm #

    Doc – Thanks for your posts. Much of what your going through resonates with my situation. I’ve had UC for about 6 years now and have good times and bad. The good was being on Infliximab (Remicade to our cousins accorss the pond) but after a year of no symptoms the GI withdrew it. Symptoms returned but now the Infliximab is far less effective and my UC has progressed to the clear fluids that need to be regularly passed (fart at your peril!)

    I have a couple of questions i’d be really grateful for your views on:

    1 – What are your views on taking up smoking?
    2 – You mentioned your lactose intolerant. Where you before UC and if not how did you prove it. I’ve tried to get an allergy test (york test) but they say, if you’re on immune suppressants (i’m on pentasa, methotraxate and infliximab) the test isn’t accurate.

    Thanks again for the post. I completely agree how rubbish it is to have this and finding a cure is so infuriating. If you believe everything you read there really is nothing you can eat. I’m in the same boat for constipation too if i don’t take fibre. I have good results with regucol from holland & barrett.

    Thanks,

    Matt

    • Doc with UC February 7, 2012 at 7:39 pm #

      Hi Matt,

      Thanks very much for the reply.

      1. Taking up smoking? I understand where you are coming from…but that would be a big NO.
      2. Yes, I was for years….how did I know…. i had diarrhea when I drank milk, and didn’t as much when I used lactaid.

      Just so you know… I finally decided to take the huge step and finally try the SCD Diet…and I must admit, though I have only been on it for 4 days….a definite improvement in how things are working. If this continues to improve, I will become very vocal about the value of the SCD diet.

      Regards,

      DocWithUC (Tom)

      • Jimbo February 10, 2012 at 3:10 pm #

        Tom – I’d be really interested to know how you get on with the SCD. I’ve bought the book but my professional life is so hectic, often with travel, that trying to stick to the diet’s severe limitations looks almost impossible.

        Good luck and llet us know.

        Matt.

  14. Laura from Toronto
    Laura February 10, 2012 at 4:20 pm #

    Hey there Doc,
    As a relative newbie to the scd, I just wanted to share a bit with you. I am on day 18 and am pretty much down to 1 bowel movement a day, first thing in the morning (sometimes 2). Pretty unbelievable to me as just before I started I was in a bit of a flare going 6-8 times a day and getting up at night. I also was having those terrible moments when you break into a sweat holding it all in when you are in a situation where there is not bathroom available, just waiting for it to pass. The bloating and cramping are gone. There is still some blood and mucous but I have had a few movements where it was free of both. Very exciting. I have read that if you have an issue with the dairy to wait a month after being on the diet and then to try the scd homemade yogurt. A little at a time. I really hope for you that you will be able to tolerate it, then you will be able to get the calcium as well as the good bacteria. Good luck with it!

  15. Bev February 18, 2012 at 9:29 am #

    Doc…how are things going on the diet front?

    Bev:)

    • DocWithUC February 23, 2012 at 5:30 pm #

      Hi Bev,

      ok….so this is a bit of a roller coaster….here it goes….

      I started the SCD diet 3 weeks ago…. and went through the expected Herxheimer reaction for 15 hours
      (http://en.wikipedia.org/wiki/Herxheimer_reaction)… I felt well after that…. and was good about not eating any complex carbs… I was eating eggs for the first time in years…and even tried small amounts of the SCD legal yogurt… I felt very good…but then started to get abdominal pain…. the D would come and go….and maybe I should have stopped foods with almond flour…but I desperately needed the calories. Even with this, I ended up losing about 8 – 10 pounds…that I did not have to lose. Earlier this week (week 3)…. things seemed to go south…. more bleeding…and intense D …. getting up 2 – 3 times a night… It was clear that I was starting to flare. What was odd…was that I think something else was going on…. I think…. I have an issue with eggs. I was eating 2 eggs every morning….since I started the diet… the last time I ate this…. was 2 years ago… the last time I flared. and all this occurred while on the lialda. So, unfortunately…and as a last choice, I started a 30 mg predisone taper. I feel so much better….in just 5 – 8 hours of prednisone…. abdominal pain and bleeding gone….

      So my plan is to get off the prednisone with this taper…. stay on the Lialda…. get some weight back on…..with some bagels and rice….cooked chicken/shrimp, cooked squash, carrots, and spinach….and then figure out, very carefully…. if I can add the healthy SCD yoghurt back into my diet….as a good source of calcium….if I can have a bit of cheese….again…and then slowly…try eating the almond flour muffins…slowly…

      This went way beyond proctitis…..and, yes, I know I made a mistake…probably too much too fast…but I guess, unfortunately, it’s the only way to learn sometimes. Am I disappointed and sad….god yes…. but I need to get a good night sleep again…and I need to get some weight back…..

      Of course, I wish I had better news to report. wishing you all the best…

      DocWithUC (tom)

      • Bev March 6, 2012 at 12:53 pm #

        Hi again…wow, isn’t this disease a never ending quandary. I am sorry to hear about the things that happened to you on the scd. What you said, about trying things slowly sounds like a good idea.

        Off that topic…I took lialda for four days, in replacement of asacol, for convenience…and it made me very very nauseated! So sick, all I could do was lay down…and eat nothing! I have to go back to the asacol. Isn’t it strange, because they are the very same drug, just a different dosage. How many lialda do you take per day? Since I was on 12 asacol a day before, I was prescribed 4 lialda, once per day. Now, I am back to taking 4 asacol, three times per day. What a drag! So much for that idea.

        How do you feel on lialda? Are you nauseated at all?

        Take care and let us know how the second attempt at the diet goes…

        bev:)

  16. DocWithUC February 23, 2012 at 5:22 pm #

    ok….so this is a bit of a roller coaster….

    I started the SCD diet 3 weeks ago…. and went through the expected ( http://en.wikipedia.org/wiki/Herxheimer_reaction)… I felt well after that…. and was good about not eating any complex carbs… I was eating eggs for the first time in years…and even tried small amounts of the SCD legal yogurt… I felt very good…but then started to get abdominal pain…. the D would come and go….and maybe I should have stopped foods with almond flour…but I desperately needed the calories. Even with this, I ended up losing about 8 – 10 pounds…that I did not have to lose. Earlier this week (week 3)…. things seemed to go south…. more bleeding…and intense D …. getting up 2 – 3 times a night… It was clear that I was starting to flare. What was odd…was that I think something else was going on…. I think…. I have an issue with eggs. I was eating 2 eggs every morning….since I started the diet… the last time I ate this…. was 2 years ago… the last time I flared. and all this occurred while on the lialda. So, unfortunately…and as a last choice, I started a 30 mg predisone taper. I feel so much better….in just 5 – 8 hours of prednisone…. abdominal pain and bleeding gone….

    So my plan is to get off the prednisone with this taper…. stay on the Lialda…. get some weight back on…..with some bagels and rice….cooked chicken/shrimp, cooked squash, carrots, and spinach….and then figure out, very carefully…. if I can add the healthy SCD yoghurt back into my diet….as a good source of calcium….if I can have a bit of cheese….again…and then slowly…try eating the almond flour muffins…slowly…

    This went way beyond proctitis…..and, yes, I know I made a mistake…but I guess, unfortunately, its the only way to learn sometimes. Am I disappointed and sad….god yes…. but I need to get a good night sleep again…and I need to get some weight back…..

    Of course, I wish I had better news to report. wishing you all the best…

    DocWithUC (tom)

  17. Shelly in Maine February 24, 2012 at 5:04 am #

    Hey Tom,
    Hang in there! Sounds like you probably are on to the culprits…eggs and/or yogurt?? I would be very careful with bagels and maybe even rice?? I try to only add 1 thing back in…like the elimination diet. I am not true SCD, but when I am having issues I resort back close to it. I keep a list of caution/no foods which may trigger and stay away from them. If you can find a lighter more organic bread(I do organic oatmeal bread with very few ingredients) but try to limit it in general. I also question anything nut based as I have found that to be a caution/trigger for me(I don’t eat nuts or popcorn).
    I highly recommend soup-I do chx(no spices or onions-sometimes I use rotisserie because I really don’t like to cook and store bought chx broth-these are not SCD legal, carrots and your spinach! and yes noodles(I prefer no yolk) and smoothies which you can easily take both to work…broken down stuff so your digestive system doesn’t have to work so hard. I think Bagels require too much from your system…plus being a bread!
    Don’t forget to look up VSL#3-Rx strength and you can work up to it if the yogurt is bothering you…I’m sure you read Adam’s survey on probiotics(I didn’t take it)-there are also some natural anti-inflamatory products to try(I have not…yet), but just be careful because they can cause the same problems you are trying to fix(just like some of the traditional meds!!). I know I mentioned some of that stuff before, but really just wanted to wish you luck and good health and thanks for keeping us posted.
    Shelly

    • Doc with UC February 24, 2012 at 9:19 pm #

      Shelly,

      Thanks so much for your comments…..greatly appreciated.. I’ll write more soon.

      Tom

      • Wendy February 25, 2012 at 3:03 pm #

        Doc,

        Just a few comments, questions here. I am on the scd diet myself and have found great relief. In my endless research, I found kefir milk and fermented foods, so I SLOWLY added the kefir and more fermented foods into my diet. In researching, http://bovinity.webs.com/kefircancertherapy.htm, I found the kefir has, what I believe is, the ability to help us break down lactose. And the fermented foods help with increasing our “good gut bugs”. Have you done any research on either of these? (as if you have all the time in the world) What are your thoughts? Feel free to call me crazy or miseducated-I like others just want normalcy.

        Thanks
        Wendy

  18. Em April 23, 2016 at 8:26 am #

    re: Urgency
    I was just in to see my GI Doc yesterday. He said that he asks about “Urgency” because urgency symptoms are correlated with the inflammation level of the end of the colon (rectum). So if there is urgency as a dominant symptom, then it can help to use suppositories and enemas.

    HTH

    Emma (Toronto)

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