SCD With Milder Symptoms or Surgery

jill on the beach with husbandMeet Jill:

My name is Jill. What I thought was runners trots during a half marathon benefit for special needs children turned out to be UC. I was in my early 30′s (now 41). I’ve been through all the meds and at mayo clinic now by gastro referral. Cooking, gardening, fitness are hobbies. I just married the most wonderful man this year, have 3 children and 3 grandbabies.

My Symptoms:

bloating hair loss
gas urgency/accidents
blood dizziness
mucus recently need glasses to read
back pain constipation/ the big D
sporadicjoint pain 2-20 trips to the porc bus per day

My Story:

Hello fellow UC’rs! I have been creeping on this site for awhile and have to say you all are awesome! Adam your book has given me the courage to be more open about what is going on with my UC relationship. Thank you.

My gastro has finally decided that she can’t do anymore for me and has referred me to Mayo clinic. I met with the doctors the first day and they are already talked surgery or possibly a clinical trial in Chicago after reviewing my history. I live in Kansas so the trial prol a no go but agreed to some testing to determine exactly what my UC is up to and if there is a possible Crohn’s, bacterial issue. They have tested my sphincter muscle, stool, ct with barium and iodine flush ( iodine flush howdy the fire!), colonoscopy with several biopsies within 24 hours. Tomorrow I meet again with the Dr.’s for the recommended treatment.

I have never seriously thought about surgery until the other day. They make it sound like it will take all the UC away with only 6-8 bm a day with a couple of them at night. The surgery is a 92% success rate. I’m not taking any meds and relatively ‘healthy’ they say. I am a good candidate. hmmm. good candidate yes, healthy? I wouldn’t be here if I was healthy. Pouchitis and obstruction may be complications but I can go back to the bag if the j pouch isn’t working for me. hmmm. Is my colon that bad?

Would I be trading this so called mild non responsive UC for a new set of issues?

My relationship with UC started 2003ish. I thought I had runners trot but they didn’t end after the race. I wished I had a skirt I could have put over my head for privacy as the other runners passed by. You know like the pictures in national geographic of the women using the trench. Anyway, my doctor referred me to gastro right away. Gastro couldn’t get me in for a month or so. She did a flex sig right there in the office with my mom right there no anesthetic, was given short dose of pred and sulfasalazine. Allergy developed in a few months so another flex sig. She said inflammation was down and tried colazal/canasa. Didn’t help so colazal/proctofoam. didn’t help. I asked about diet, naturopathic alternatives as my former brother in law was a naturopatic physician. She said it helps but wont kick or hold remission. I was referred to a colorectal specialist. He got pissed of at my gastro and upped the colozal and then the high doses of predisone started.

I continued to run and lift weights with my buds. They were very patient with me as I ran to the bushes on our early morning runs. Somehow the makers diet was presented to me and I tried but still no remission. Prednisone made my symptoms tolerable but never remission. When I tapered my symptoms super uber worsened. Finally the remicade. It was going to kick this. NOT! but it did get me off the steriods after 8 months or so also had 3 peri-rectal surgeries before my doctor believed it was not working. Then came humira. Oh those lovely shots. It kicked UC alright and I thought- whew this is worth it. Then came the rash under my sportsbra….hmmm…I must have grabbed an old bra so I threw it away and sprayed tinactin on the rash…It didn’t go away and spead to my scalp and groin… long story short it was the humira and I got my second auto immune disease- pustular psoriasis.. The pustules were filled with staph and covered 90% of my body…I was put on methatrexate, steriod creams and oils for about 10 months before it went away…

My UC was in remission….no meds no diet for 2-3 years until july/august of 2011…started to notice changes and called the gastro right away. She started off the same regiment colazal, canasa, methatrexate. My back went out while putting my dog on a leash due to so much inflammation! Ended up in the hospital on April fools day. lol. Another flex sig. dc methatrexate and started evil pred. and the Imuran talk. I got pissed and while layed out with my back I found this website and scd lifestyle.  Elaine made so much sense. I did the intro diet in May and tapered myself off pred by june 1. I tried to tell my gastro how much better I was feeling symptoms were improving on scd. She said it was similar to fodmaps and said it wouldn’t help. I needed to find a med that will work. Imuran is our last resort and if this doesn’t work she would refer me to a clinic where other ‘exotic’ treatments are available..YIPPEE!!! I wanted another opinion. But you know insurance, I needed a referral. So I did the Imuran. After 3 months of feeling like total crap, back pain, thinning hair, dizzy spells, bruising, rashes, unable to run now for 5 months no remission and abnormal blood results I got my referral to Mayo….. so here I am today.

Would it be better to do scd with milder symptoms or surgery?

Where I’d like to be in 1 year:

loving life In remission, not looking for the next restroom, working out, no back pain or dizzy spells.

Medications:

Sulfasalazine- allerigic, eyes and skin turned yellow- scared my children
rowasa- couldn’t hold it in long enough
canasa, proctofoam-helped make UC tolerable for a brief time
colozal, lialda- didn’t work
remicade-didn’t work for remission, made my back stiff, helped me get off pred.
Humira- kicked UC- gave me pustular psoriasis
Imuran- made me feel like I had the flu and messed my blood up with no remission
prednisone- one evil drug
methatrexate- worked the first time
The makers diet – didn’t work
hyoscomine- stops the big D
lomotil- don’t try when heading out on a run, makes you feel like you have cinder blocks strapped to you feet. lol

written by Jill

submitted in the colitis venting area

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Tags: pustular psoriasis

21 Responses to “SCD With Milder Symptoms or Surgery”

  1. AdamSeptember 16, 2012 at 3:01 pm #

    Dear Jill,

    Thank you so much for sharing your story, and also for adding your super beautiful beach picture! As I’m sure many people tell you, its hard by looking at you that you have any sort of medical stuff going on in the background.

    Your question about continuing on or moving to surgery is awfully hard to decide upon. I hope you’re read through the UC Surgery Survey, if not the link is here: http://www.ihaveuc.com/26-colitis-surgery-patients-survey-results/ There’s some good info from UC’ers who’ve had surgery on that page.

    I make some mention in my book about my uncle Bennett who had Crohn’s Disease and he had surgery many years ago. And like the overwhelming number of people who opt for that, he led a super awesome post-surgery life with very few complications. Yes there were some setbacks, but mainly right after his surgery. And once things were squared away, he was medication and symptom free decades living the good life. And his case is most definitely not abnormal.

    You’ve obviously tried out the whole range of medications (way bummed that you had to live with the humira related pustular psoriasis, that stuff is nasty ain’t it…) and dieting in several ways. So at the end of the day, I think you can very much rely on your past experiences to help guide you on what to do next. The fact is, you’ve seen a real good chunk of ways to treat UC and some things have worked well, others not as well.

    I guess what I’m saying is, no matter what decisions you make, you’re going to be making the right one. You’ve got too much experience so far, you’re seen the best doctors possible, and most importantly, you’re going to be happy in the long run with whatever you do.

    On a side note, there’s going to be new story coming up real soon from a recent J-poucher who had surgery (with pictures–yeah Blake!!) and that might give you some more ideas.

    Thanks again Jill for writing, and Big pat on the back to your husband and your family for hanging in there with you through all you’ve dealt with over the years.

    -Adam Scheuer

  2. StormCatSeptember 16, 2012 at 3:36 pm #

    Jill, what a great timeline and story! Love the picture as well, as it gives hope that relationships ARE possible with UC… Thank you for sharing your story and your history! Please keep us updated with what you decide to do and keep that wonderful smile on your face!

    • Jill
      JillSeptember 18, 2012 at 4:41 am #

      Thanks- I did decide to have surgery. The doctor tested my spincter in a clinical exam and gave the thumbs up….The surgeon says there is a machine that tests the strength…Can you imagine? My mind races with ideas of the creation of the device!!! October 4th is the surgery up at mayo. It will be done lapro. 2 step…

      • Coralie
        CoralieOctober 2, 2012 at 12:01 am #

        Hi Jill

        I will be waiting to hear what you think and feel after the surgery. It takes alot of guts, I think, to go down that path. It was also offered to me and I just didn’t believe I was ready to give up on my colon. I am definitely not going to try the Humira if it is ever offered to me after reading your story. As if you weren’t dealing with enough! And hey, you must love running if you are happy to crap on the run. Well done! I am currently on Remicade and having some success although mostly I would say I am controlling symptoms with diet. Trying to stick to FODMAP and want to start on the SCD to see if that helps. All the best and looking forward to your updates.
        Coralie

        • Jill
          JillOctober 4, 2012 at 4:00 pm #

          The last of the test revealed crohns and the surgery cancelled. I will be starting cimzia once insurance is settled. Surgeon said UC does not have fistula, obstruction, mouth sores, joint pain. The j pouch would have failed. Was not happy to lose my colon but ready for the ‘cure’ , get my life back. Now it’s back to the drawing board.

          Colonoscopy and biopsies all said UC. Enter something ct said UC but partial obstruction. Was still able to do colonoscopy so GI thought maybe just tissue collapse. MRI confirmed obstruction and fistula.

          Glad to have my colon…. Anyone been on cimzia?

  3. ChristineSeptember 16, 2012 at 3:37 pm #

    Hi Jill! Thanks so much for writing! This site has been a lifesaver for me, and I think sharing your story will only help. At the very least, you’ll know you’re not alone.

    I can’t believe what you wrote about because I am literally asking myself the EXACT same question right now. I am 32, diagnosed at 29, and have been thru tons of meds, too. Right now, I’m taking Colazal (3 pills, 3x a day) and 6MP (very similar to Imuran). Another flare just started this past week, and I’m in the throes of it now. My gastro suggested that I take prednisone and I refused. I had reluctantly agreed about a year and a half ago to take it during another awful flare. It was like my flare powered thru the pred! The flare lasted 5-6 months, beyond the duration of the pred (tho, I got the lovely side effects of the steriod, too).

    As a result of the onset of my current flare, I am on an increased dose of the 6MP (100mgs) and the colazal, plus enemas. I am in misery. I JUST ordered an SCD cookbook 2 days ago, but I’ve been thinking a lot about having the surgery. My gastro has always maintained that 1. my colitis is “mild to moderate,” although he admits that my flares are “stubborn” and 2. diet has no impact on the disease (which I don’t believe). My flares are more than stubborn, although someone without this disease might be able to use that word. They are debilitating and pure agony.

    I have a follow-up appt with him in one week. It was initially to check in on my flare and to discuss Remicade. I will now be discussing the surgery with him. I was just saying today, that this is difficult because there is no “right” answer, and we, as the people with UC, seem to have to do a lot of our investigations and research. All I know, is that I (and really, no one) can or should have to live this way. I applaud you for powering through your runs and active lifestyle. I’m not able to do laundry when a flare hits!

    Part of me wants to wait thru this flare, and try the SCD diet wholeheartedly before deciding for the surgery (because I’m petrified that something will happen and I’ll end up with a bag for life). Another part of me can’t even imagine waiting thru this flare because there is no set end date and mine last weeks, if not months. I’m going to do more research, see what my dr. says, and go from there. But I don’t think, as I did just a week or so ago, that I will try to move up the treatment ladder to Remicade.

    I’m so sorry for all you’ve been through. I know how bad this is. Please keep us posted on what you’re thinking and what you ultimately decide to do.

    Christine~

    • Jill
      JillSeptember 18, 2012 at 10:59 am #

      It sounds as if UC has gotten that gerbal running on the squeaky wheel in the head!!! Options, side effects, qualtiy of life, family, career, that darn gerbal runs faster.

      I decided after much deliberation and that darn gerbal running in my head to have the surgery. It will be done lapro at mayo clinic…2 step. When breaking the news to my children and parents wow I didn’t realize how much this disease has taken from them…My son is 14 and does not know the old me…he said you mean no more special food? drugs that make you loopy? always having to be around the restroom? we can stay till the end of events? I always like to leave early as no avoid traffic and get to the next toilet without accidents.

      My middle daughter (19)started caring for a terminal cancer patient thinking she could handle it. She made a comment that she grew up with me being sick and loves me but she needs a break from all the sick and is going to look for another job….

      My oldest is 21 and married with 3 children. She struggles as she thinks she may have UC

      UC has impacted so many aspects…………..My employer has been understanding but that is running thin. He does have a business to run…

      It is a hard decision but after educating myself, trying every avenue, seeking wise counsel I am looking forward to a new life…

      This surgery is not going to cure UC…but as the surgeon says…Surgery is to improve quality of life….help me fight UC

      Hope my rambling helps..
      Jill

      • BevSeptember 18, 2012 at 11:15 am #

        Jill, I totally understand…and like Adam always says…it’s your decision, and it will always be the right one!!

        One thing is for damned sure….HAVING UC JUST PLAIN SUCKS

        More power to you, girl!!

        Cheers:)

      • Per VorkSeptember 18, 2012 at 12:04 pm #

        Jill if your Doctor told you it isnt a cure, then he is wrong, UC can only develop in the large colon, and by doing the surgery, they will completely remove your large colon, which will eliminate UC from developing in the future.

        My Doctor told me, that there is a 50% chance that i will have some kind of complication during the first 3 month, but he also said thats quite normal and those complications are fixable, he then told me that they always call every patient they have 1 year after the surgery to check progress, he told me that only 3% of those people came back to him with recuring complications, everyone else he never saw again.

    • Coralie
      CoralieOctober 2, 2012 at 12:08 am #

      Hi Christine

      You sound like me – you think, if I let them bag me, tomorrow they will find a cure and it will be too late! Bugga! I want to keep my bits as long as I can. Also, I have been on Remicade for 12 months. The only side effect I have is itchiness. It has driven me a bit mad over the winter because if I wear warm clothing it gets worse. So steroid cream controls that. I think it is important to drink lots of water – something I don’t do. But I noticed that every time I get an infusion within a minute or two I am scratching my head. It goes after a few minutes but I am fairly convinced that my itchy skin is due to Remicade. Of course, not everyone has the same side effects so it will be up to you to try it I guess.
      Coralie

  4. DawnSeptember 16, 2012 at 4:08 pm #

    Jill,
    Thank you for sharing your story! I can’t tell you what you should do, I can only tell you what I did. I made the decision to have j-pouch surgery in 2011 and I don’t regret my decision one bit. I can tell you the process is not easy….but, for me it was worth it. I didn’t even go through as much as you have in terms of the number/level of meds and side effects. My life was disrupted though and I couldn’t do the things I love which includes distance running. It is not an easy decision to make but, it sounds like you are covering all of your bases with your referrals and tests. I have a blog which I kept throughout my surgery process and invite you to check it out: http://life-takes-guts.blogspot.com/

    If I can answer any questions for you about the process or what life is like now, please don’t hesitate to reach out. I figure if I had to go through all of this hell then I may as well use it to help someone else whenever I can. Hang in there! There will come a moment when you realize all you can do is trust your instincts and make the best decision you can with the information you have.

    • Jill
      JillSeptember 18, 2012 at 11:50 am #

      Thank you! I’m going to check out your blog and get back with you. I have all sorts of questions. Jill

  5. Per VorkSeptember 16, 2012 at 6:54 pm #

    I have been trying to get my UC under control, but its impossible, i have tried all medicin there is, and nothing can keep it in remission, so tomorrow im having my surgery consultation and im actually looking forward to it :) its time to move on and get cured, as my doctor stated many times, medicin is limited and it will always be like that.

    Thanks for sharing your timeline/story Jill.

    • Jill
      JillSeptember 18, 2012 at 11:48 am #

      how did the concult go? I’m having the 2 step j pouch surgery oct 4 at mayo clinic laproscopic.

  6. BevSeptember 17, 2012 at 6:01 pm #

    OMG! What a UC story…ugh.

    I’m not so sure that surgery is a ‘cure’. It used to be said that it was, but apparently, you can have alot of other ‘different’ problems after colon removal. We just can’t win, can we?

    Have you seriously tried a good probiotic? I have moderate to severe pancolitis, and am currently in TOTAL, and I do mean TOTAL, remission…and I am not on any of those drugs. I cannot take drugs. They all seem to mess me up really badly. My body rejects them in one way or another, seemingly. I’m actually glad about it, tho, because the drugs used to treat our disease are NASTY and dangerous.

    So, after feeling like death for 13 years, I decide to just try a good probiotic. I never believed in natural stuff…I’m a big skeptic…but lo and behold…the probiotic actually made me symptoms go away! I think people bail out too soon with probiotics. It can take a month or even two. Anyway, I weaned off of the 12 asacol pills I was taking every day (I was in a year long flare at the time, but the drugs were doing nothing except making everything worse, and when the doctor recommended steroids, imuran, and remicade, I said no way!) and I felt EVEN BETTER!!

    Now, I only take one 50 billion strain probiotic, a scoop of L-glutamine (which healed the mucosa of my colon and stopped the bleeding), and a 4mg capsule of astaxanthin, which is a natural anti-inflammatory, every day!

    That’s just my story…but it worked,. It sounds like your body, too, has an aversion to drugs…BIG TIME. Some of them have made you very sick. If they don’t work, and they make you feel worse…why not try another way? These three things that I take cannot hurt. Oh, and the SCD diet…you can try that too!! I am not one of the UCers who has to watch what I eat, but you might be.

    Cheers,
    Bev

  7. Per VorkSeptember 18, 2012 at 11:50 am #

    Yea i have tried alot of probiotics and most diets, none seems to work on me, its actually funny i started to take Vicodin for the pain a week ago and since then i havent felt my UC at all, 1 BW a day, no blood, firm stool and of course no pain. I had my surgery consultation yesterday and it went well, i love the doctor thats gonna do the surgery on me, extremely honest, told me all about pros and cons during and after the surgery, im actually looking forward to next month for the procedure.

  8. Jill
    JillSeptember 18, 2012 at 11:56 am #

    I ttok percocet when my back went out… It helped my UC for a brief time also. Unfortunately I can’t take narcotics and work.

  9. VickySeptember 19, 2012 at 5:36 am #

    Wow! What a doozie of a story Jill! Good luck to you and your recovery with surgery. It will be a long road but we are all here for you :)

  10. BlakeSeptember 19, 2012 at 7:16 pm #

    Hey Jill, great wedding picture! Husband looks like a lucky guy. I just want to throw in some support and say that I think you’ll be happy with your surgery. I had the J Pouch in 3 steps, if I could do it again, maybe I would’ve done it in 2 to save me a surgery, but there is no turning back now. Try not to do too much internet surfing on the J Pouch because you’ll just drive yourself crazy. There are so many horror stories out there and not a whole lot of people write about how greatful they are with their J Pouch. The number of people that are succesful with J Pouch surgery far outweigh the ones that are not, just keep that in mind. Good luck and keep us posted!

  11. Jill
    JillSeptember 20, 2012 at 6:26 am #

    Thank you so much! We were married jan this year. I am so lucky as his previous girlfriend had crohns so he totally understands. I have been single for awhile as my ex left me because of UC. Things always work out.

    Right now I’ve been trying to figure out how far out to reschedule patients. What kind of help am I going to need after surgery. I’m also curious after j pouch do the other symptoms of UC disappear?

    You are right with surfing the net. Lots of horror stories peppered with a few good ones.

    Jill

  12. BlakeSeptember 20, 2012 at 8:46 pm #

    Everyone is different as far as how long they need to recover and such. You will most likely get an ostomy nurse to help you in the hospital with your bag. They’ll teach you how to change it, make sure you ask all the questions you have, would be good to write them down. They will most likely set you up with an in-home nurse that will make a few visits to see how you’re doing also (atleast that’s what the hospital did for me). I would advise you to call all the major ostomy supply places like Convatec and Hollister and have them send you free samples. Your nurse will give you info with phone numbers and stuff. My pain always dropped off after 2 weeks with all 3 surgeries, but I took more time off work than that. You will probably want to take atleast 4 weeks after each surgery, but I’m sure your doctor will grant you more time if you ask.

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