Desperate Mom – Symptoms for 6 Horrible Years

Kim h fullIntroduction:

My name is Kim and I am 44 years old. I was diagnosed with UC in 2008. I am a married mother of 3 wonderful kids, ages 10, 13 and 15.

Some more about me:

I have always been very active especially when it comes to doing things with my children. We love to swim, hike, bike, play sports, and just hang out. I grew up by Lake Powell and have always enjoyed water sports. I love watching my sons play sports and my daughter’s performances. My oldest son plays high school baseball and golf. My middle son plays basketball and tennis and my daughter is an entertainer. She does theater, sings and dances.


I currently am in a major flare. I have 20+ bloody stools per day. At least once a day, usually more, I don’t make it to the bathroom. I have had lots of cramping, pressure, and urgency in the last few months. I am having lots of trouble sleeping because I am up all night going to the bathroom.

Desperate Mom:

I was diagnosed with UC in June 2008 after a year of being scared to death by my symptoms and not wanting to have a colonoscopy. It has been a horrible 6 years that has robbed me of time with my children and feeling good. In this time, both my parents have passed away which I know has produced lots of added stress as well.

I am currently taking 60 mg of Prednisone and 6 – 800 mg Asacol HD per day. I have pretty much been on Asacol or some other type of mesalamine for the last 6 years. I have been on and off Prednisone for the last 6 years as well. Currently I have been on Prednisone since August 2013 when I had another flare. They had me on 80 mg per day and I was slowly tapering off and down to 10 mg per day in December 2013 when I flared again. Three weeks ago, they put me back on 40 mg a day, but so far I have not seen any improvement.

I, like so many others, have tried everything from antibiotics, to Apriso and other mesalamines, to enemas, to Remicaid. I had many horrible side effects from Remicaid and stopped taking it after my third infusion in January 2013. I had itching, cramping, hair loss, dizziness, no energy, no appetite and memory loss to name a few. They put me on Remicaid after I spent 12 days in the hospital in December 2012 with a major flare up. They told me that I almost lost my colon. I was just having minor UC symptoms after being hospitalized until my Mom died tragically in April 2013 and it sent me back into a major flare up.

My GI doctor wants me to start Humira ASAP, but I am scared to death of the side of effects of it and all the other drugs that I have been on and am currently taking. I read a post from Graham about Asacol causing strokes and that really concerns me because I am dizzy a lot. I am also concerned about being on Prednisone and the side effects, but it seems to usually help my flares, but not so much this time. It makes me angry that I have been on these medications for 6 years, and my GI doctor has not mentioned that I should be taking folic acid with Asacol.

I just joined Adam’s site a few days ago and bought Renew Life’s Ultimate Flora Critical Care 50 billion Probiotic yesterday and took my first one a few hours ago. I am praying that it helps me get over this flare.

I desperately want to stop all prescription medication because of all the side effects. I am only 44 years old and sometimes I feel like my memory is fading fast. I think it is one side effect of the medications that I have been taking for years.

I am going to start the SCD today as well. I am hoping that between the diet change and the Ultimate Flora probiotic, that I can start feeling better, start having normal bowel movements and get off ALL prescription medication. I just really want my life back. I want to be able to leave the house without wondering if I am going to have an accident and where a bathroom is. I am tired of missing my kid’s activities because I am afraid of having an accident in public.

I could really use some encouragement and advice from those that have been there. For me, surgery is my LAST option. I don’t want to have my colon removed. My last colonoscopy in December 2013 showed that I had several polyps and I am scared to death they will lead to colon cancer.

It is nice to know that I am not alone and there are others who are battling this horrible disease as well! Thank you!

written by Kim H

submitted in the colitis venting area

Adam Scheuer, founder of

Adam Scheuer, founder of

Ask Adam:

“HI Adam! I have started probiotics and will start the SCD today. Should I continue taking my prednisone and Asacol for now? I desperately want to get off them. My GI doctor’s only remedy is medication. He doesn’t think diet effects UC. I am so relieved I found your site, Adam!! Thank you!!”


Just like probably every other person who is reading this story, I’m super sorry to hear what you’ve been going through with so little relief for so long up to this point.  The crazy part to me is how your diagnosis was the same year as mine in 2008, yet you’re still having trouble getting things under control.  But…I think things are going to change for you.

As you may know, I myself don’t take probiotics in pill form, but I do get what I need from things like sauerkraut which is a pretty sweet(or should I say sour) source of them.  But, on the same note, there are a CRAPLOAD of UC’ers here who do use probiotics, many who rave about them, and many who use the exact same one you mentioned in your story.

But you’ve got another more important question in my opinion.  And that is about continuing to take your medications.  This, you HAVE TO CONSULT with your GI about.  No question about it.  And I know you’re probably thinking…”Geeze Adam…my GI only believes in medications working for UC…I want to get off them…what the hell???”.  I get it.  And I hear you loud and clear.  Especially since you had some negative side effects that I also had from biologics back when I was taking them years ago. But, you need to be very careful.  Especially with regards to Prednisone.

Prednisone can be a great medication for temporarily treating out of control UC symptoms or a stubborn flare, but it’s not something to be playing around with or starting and stopping without the guidance of a doctor you trust.  There can be SERIOUS consequences of stopping prednisone abrubtly without a proper tappering session.  I’m guessing  your GI has talked to you about this before, and if not, GET A  NEW GI.

Actually, I would highly recommend you find a new GI doctor no matter what.  I did this at one point in my UC career, and it was one of my best UC decisions ever.  You obviously are at odds with your current GI, you’re hoping to get off Meds, the GI wants you to try every single one approved for UC…  That’s usually not a win win situation.

So, if I was you, this is what I’d do:

  1. Sit back for a few minutes in a chair, and say out loud to yourself “I’m going to finally get better!” (Heck, wake the neighbors up)
  2. Start looking for a new GI doctor to begin working with (I wrote a post and there’s a link within this one about my meetings with my current GI doc:
    1. Make sure this doctor is cool with you being interested in alternatives to Medications.  He/she doesn’t have to believe fully in that, but as long as he/she will support you and your thinking/desires…that’s KEY!
  3. Continue on with the SCD diet and probiotics.  My diet changes have worked wonders for me, I’m able to live the life I want, the way I want (minus getting wasted and abusing alcohol which I barely even miss anymore..)

I hope this gives you some ideas Kim, and I wish you and your family the very best,

Adam Scheuer


32 thoughts on “Desperate Mom – Symptoms for 6 Horrible Years”

  1. Hi Kim,

    I am in almost the exact same situation you are in, soooo many similarities but lower my current BM to about 5-6 a day and night. Same thing with the blood, accidents, same horrible experience with Remicade and the prednisone at 40mg with this current flare hasn’t touched it…. and I have been on a strict SCD, too. IMO, I would NOT do the Humira if you had a bad experience with the Remicade. Remicade almost killed me. I am lucky to be alive after that, and it stayed in my system for over 6 weeks after only having 2 infusions of the crap.

    Stress is definitely something that can make you flare, I have seen it happen to me myself. Diet was all fine, things can be somewhat under control, in a routine.. and then BAM! Here comes the blood! and fevers! and cramps! and liquid stools!

    I’ll be keeping an eye on this thread for sure… the only thing that keeps me going is the fact that I know if some people can come out of it, and these flares don’t last forever, then we can, too. What makes me feel better is this website, and generally reading and doing more research on what worked for other people.

    Big hugs, xoxo, HH

    1. HH,
      I am so sorry you are in the same situation as me. I pray for both of us. The combination of the SCD plus the probiotics and essential oils have seemed to be helping me in the last few weeks. I definitely do not want to do Humira. It sounds like both of us had bad experiences with Remicaid. My last infusion stayed in my system for a couple of months as well, and I continued losing hair for months afterwards. It was awful. If I continue to improve, my next step is to try fecal transplants. I don’t believe that prescription drugs are the only answer. I pray that you can find something that works for you too!!

  2. Hi Kim, I’m sorry you’re having such a tough time right now.I was diagnosed with UC in 2006.I’ve been flaring on and off badly for the past year.A colonoscopy in December 2013 showed that I have severe pancolitis.My doctor wanted my colon removed. I wanted to explore more options first.I’m now on humira, 6×800mg Asacol, and 1 Canasa suppository. I’m off Imuran and Prednisone.I feel great.Normal bm, no pain, no blood . Eventually I’ll stop the Asacol and maybe even the Canasa.I don’t have any side effects from the humira.And believe me I was terrified.The shots hurt but I take that over the UC symptoms. I also take a probiotic and vitamins.I hope you’ll feel better soon and that you’ll find a treatment that’ll work for you.

    1. Thank you Katja for the encouraging words. It is also nice to see the flip side of the story on Humira! I am so happy it is working for you!! I know that I need to get off Prednisone since it is bad to be on long term. I am hoping with the diet and probiotics and oils that I can go into remission without having to do Humira, but it is nice to know that Humira does work and it may be a possibility for me down the road. I hope not, but you never know. I hope you continue to stay feeling great and can get off the Asacol and Canasa. Thanks for your encouragement.

  3. What you’re about to try has worked well for me so be optimistic. Given how rough a ride you’ve had I’d suggest, in my amateur opinion, that you take significantly more probiotics through a variety of sources: probiotics (vsl#3), scd yogurt (the yogourmet yogurt maker is my new best friend), kimchi, and sourkraut. To aid in the healing of your guts I’d also suggest taking 10grams of l-glutamine 5 times a day.

    1. Thanks Roger! I am actually thinking about adding L-glutamine. Thanks for reminding me. I am allergic to dairy so yogurt is not an option for me. I wish it was. I love it! I need to try sauerkraut and kimchi. I appreciate you taking the time to reply! I am really trying to be optimistic. I NEED to get well!!

  4. Hi Kim,
    My husband was diagnosed with UC and PSC (liver disease) back in 2006. He was in a major flare like you, 20-30 times a day and all through the night, bloody stool, anemia, pain. He was a police officer and had to take a desk job so he could have access to a bathroom all the time. That devastated him. He is 6 feet tall and weighed 139lbs.
    After a long battle and eventually meeting with a surgeon, he finally tried Remicade and it worked. He stayed on it for many years, along with asocol and prednisone for awhile, taking it less and less frequently, until last year we decided to stop taking it altogether due to long term side effects. Now, he is not taking ANY DRUGS and doing great.

    I know remecade didn’t work for you, but everyone is different. Perhaps the humira might be what turns the table for you. It sounds like it might be worth taking a chance on. I read in a forum about some differences in the two and it seems that one is certainly not equal to the other. (
    I wouldn’t neccesarily let your experience with remecade keep you from at least giving humira a try, but that’s your decision to make.
    I tell you our story so it might give you a little hope for the future. After a long battle just like yours, my husband is doing well and is not taking ANY drugs.
    Praying for you!

    1. Wow Libby! That is amazing that your husband is completely drug free now! That is definitely my goal! I am really happy he found what worked for him and has gotten his life back. I have not been able to work for the last few years because of my UC and it has been stressful on our family. I will definitely keep an open mind about the Humira! If what I am currently doing does not work, then I will look at all other options, with Humira being one of them. It is nice there are good stories with Remicaid and Humira. Everyone is definitely different. Thanks for sharing your story. I am so encouraged by your husband’s remission. It must be such a relief for you both.

  5. Sorry to hear about your continued troubles, Kim. I have been in a flare for 6 months now and the only thing that has helped me has been Prednisone with a taper. Enemas, suppositories, 6MP, and mesalamines have not worked at all. My Doctor now wants to try Humira but I refused that option. Sometimes I think the stress of seeing the GI and working my way through each of these drugs causes enough stress to continue the flare! One thing I would like to mention is that I have started Asacol/Lialda for maintenance on three separate occasions, my GI is very persuasive. On each of these occasions I was symptom free, no flares ongoing. ALL THREE TIMES I ended up with symptoms mimicking a flare…and after doing research online I have found that in some people this is a side effect. I stopped taking the mesalamines and slowly got back to normal. Just something you may want to look into. Hope you find some relief soon. If you spend some time reading the stories here on ihaveuc you will at least know that you are not alone.

    1. Thanks Joyce! I have actually been hearing and reading about similar instances with Asacol causing flares or having side effects that mimic symptoms of UC. I am going to try to start getting off the Asacol first, then the Prednisone. I am not a fan of prescription drugs because of all the side effects and I appreciate the info. I am glad to hear you are better now without the mesalamines. I am hoping for the same relief.

  6. Hi Kim,

    I’m so sorry to hear about your current troubles… hang in there… it will get better!!!

    I agree with all the great advice above… something to consider… we UCers are special and we need a TON of probiotics compared to the non-UC people out there… so keep that in mind… some people can “regulate their systems” just by eating yogurt everyday… but we need so much more probiotic action than that to populate the good bacteria and intestinal flora…

    I would recommend adding another member to your healthcare team… You have your GI and your PCP, but I would recommend also someone like a Certified Clinical Nutritionist or Holistic Chiropractor or an Herbalist… these types of practitioners want to treat the CA– USE of your UC, where as the other types of practitioners are treating your current UC SYMPTOMS. So yes, you absolutely need them to get out of this flare, but then after that, you could see someone else who wants to treat the cause and heal the damage so your body can start to heal as a whole.

    Hugs from Minnesota,

    1. Thanks Polly for the hugs!! They are definitely needed. I have tried a couple of different “homeopathic” type of doctors and did not like either one. They seemed to me to be quacks. I know there are good ones out there. I just need to find one. I have definitely been wanting to find this type of doctor to help out with my overall healing and well being. I appreciate your thoughts on the subject. I will keep everyone posted on my progress. Baby steps!!!

  7. Hi kim, you have put yourself on a good path with the introduction of probiotics and the SCD diet – you will win this battle! Also, be patient and give the probiotics and diet time to work . My son was on pentasa for 5 years and pretty much flared whilst on it and the doctor kept increasing the dosage, which helped for a month, then back to the flare. I worked out that the pentasa was making him worse and his body was rejecting it. I tried to reason with the GI and my son but to no avail. (By the way his proctitis has now increased to pancolitis) Anyway the doctor put him on 6mp and pentasa and during a 6 mp blood test found he was on his to kidney damage, so ceased pentasa and all if a sudden the 20 bm’s stopped and he improved. At thus stage he was taking vsl 3 (probiotic) , l glutamine, astaxanthin and everything was perfect for him. 6 mp hadn’t kicked in yet (it takes 3-6 months). My stopped the probiotics etc after. 6 months thinking only 6 mp is doing this, then he flared 2 months later(not as badly as when on pentasa) and now has started vsl 3 and sure enough solid 1-2 bowel motions a day. His doctor has a lot ti answer for his illness and as the dictir doesn’t believe in diet and probiotics in treating uc, and keeps telling my son, we seem to be going backwards and forwards. So, sorry for the long post (there is so much more to my son’s uc story, too), I believe you are on your way to good health and with your positive attitude you will achieve remission.

    1. That’s encouraging. I really need to up my probiotics, apparently. Speaking of 6MP, they put me on it a few years ago to try and within 24 hours I was chained to the chair with horrible flu-like symptoms. I stopped taking it immediately. Every time a drug has bad side effects, these GI doctors say I haven’t given it time to “work” yet, but if I am feeling worse then I was before I was on it, that is all I need to know that my body is rejecting it.

    2. Mary, I am so sorry your son has been going through all that he has! Sometimes I do think that doctors are just playing a guessing game with our well being and trying to keep us on drugs that we may or may not need. It is very frustrating. That is exactly why I want to get off all prescription drugs and go the natural way with probiotics, vitamins, essential oils and diet!! My GI doctor does not believe diet plays a role either, but I have improved in the last few weeks from changing my diet, so I think I can definitely say he is wrong. I pray that I achieve remission and that your son does as well!! Prayers to you both!!

  8. No diet (whether it works for UC at all, is still to be proven anyway) will reverse your polyps or your risk of colon cancer.

    See how the diet goes but don’t kid yourself, you don’t want to make the decision to have surgery too late. I’m 25 and I had a colectomy last year, and I don’t regret having surgery one bit. The only regret is not having it sooner…

    1. Thanks Tom for your reply! Surgery is definitely my last option but it is nice to know there are UC’ers out there like you that are happy with your decision to have surgery. I have a colonoscopy every 6 months and my GI doctor has taken care of the polyps and the biopsies show no signs of cancer. At this point, I am still going to try other options first. Glad you are happy with our decision. I am happy right now with mine.

  9. Many thanks, I try not to talk about it anymore with him because he has to realise what works for him not have his mum constantly talking about it. – I have learnt to be patient! The good thing is he has put himself back on VSL again, which has made an enormous difference. I know 6 mp doesn’t work, as his body has proven many times over, but the GI just keeps writing scripts for him . Initially, he was put on 75 mg dosage, which tests showed was too high for him and is now on 50mg. My son was diagnosed at 16 and is now 22. He has agreed to go to see Prof Barody in May (waited a year for this appointment), so fingers crossed for a better direction regarding treating this disease.

  10. Kim, it is a good thing the polyps were found and removed, so try not to dwell on that – regular monitoring with colonoscopies is positive and will give you peace of mind. Also, a healthy diet is another positive, so try to de stress, enjoy your beautiful family and give this time to work – it is worth a try.

    1. Thanks Mary! I pray your son finds some answers in May! I am also encouraged by the last few days and hope what I am doing will put me in remission as well!! Thanks for everything!!! Hugs!!

  11. Wow! I just noticed that my story had posted and all the wonderful replies. Thank you Adam and thank you everyone for the advice and encouragement as well as hearing your stories. I am going to try to respond to everyone individually, but just wanted to say that it is nice to not be alone in fighting UC. I wish none of us had to live with this condition.

    Since writing my story a few weeks ago, I have been improving. I have been on the SCD for about a month now, I am taking the Ultimate Flora Critical Care probiotic every morning on an empty stomach, still taking Asacol and Prednisone but hoping to taper and go off soon, with the help of my GI doctor (thanks Adam) and I have also started doing some essential oils and digestive enzymes suggested by a friend. A combination of all of this has resulted in some improved results in the just the last few days. My trips to the bathroom are down to about 10-15 instead of 20+ and I am not noticing any blood the last few days. I only had to get up twice in the night last night which is a drastic improvement. Sleep helps too!

    My goal is to try an at home fecal transplant soon. I was really wanting to see no blood before I tried it and it looks like that may be happening. I will keep you all posted on the improvement and the if I end up doing the fecal transplant and if it helps even more.

    Adam, at this time I am going to have to stick with my GI doctor. Unfortunately the town I live in only has one practice with 5 doctors and I am on my second one within that practice and he is the best choice. I can’t afford to travel 4 hours to the next biggest city with more doctors to choose from. I wish I could. Thanks for all the advice and “Yes! This is the year I am finally going to get better!!”

  12. Kim,

    You’re certainly going through a rough time. But I see in your last comment that you are improving. That’s great. I’m wondering if your GI doctor removed the polyps during your colonoscopy. He certainly should have done so.

    There’s one more supplement that I want to recommend to you that helped me immensely. It is chlorella, an algae. Research has been done on chlorella and it is recommended for treating UC. It does many other good things, too. I take the Now brand (available in drugstores and grocery stores) and take 2000 mg am and 2000 mg pm. More can safely be taken. It reduced the number of BMs for me and (this is the biggie) it gave them shape and form!!!! I also take the heavy dose of Ultimate Flora probiotics. I’ve been reading about prebiotics being good for UC but haven’t started them yet. The only med I take is Lialda. After starting chlorella in Nov 2013 I was able to reduce the prescription to one dose twice a day.

    Stay tuned to this blog for lots of support and help. Adam does a great job. And everyone is very supportive.

    Best to you,


    1. Thanks Darlene! I will have to look into chlorella. I am doing somewhat better with the diet and probiotics. I really want to get off the prescription meds soon. Thanks for replying to my post. Adam’s site has been great!

  13. Thank you Kim for your thoughtful words. Last night my son mentioned he was feeling great again and has started going to the gym and swimming pool at uni and building on it without any problems. I am also interested to read about your experience should you try the FMT approach,. As you may know through your research, Prof Barody is well into FMTs and I am hoping our appointment in May will encourage my son to try them and hopefully lead to a life without meds for his uc. I have a hard time convincing him to stop the meds because he is a medical student and his GI plays on this and says without the meds he want be able to keep up with the busy schedule of this degree – I am sure by the time my son is a doctor, he will be better than his! Wonderful that you have taken the time to respond to each post and sending I you lots of
    hugs and excellent health!!!

    1. Thanks for your kind words Mary! I hope your son can get some answers from Prof Barody. I am going to try the FMTs soon. Your son is an inspiration. I hope he becomes smarter than all the GI doctors and can help others like me and himself. Best of luck to you guys!!!!

  14. Hi kim.. let me get straight to the point… surgery is the only cure… im so glad i got the j-pouch.. its been 2 years since i had the pouch and i only had 1 case of pouchitis. i think we all had or have the same symptoms but if you want them to stop and you dnt want to take no more meds i suggest the surgery.. i got back to a normal life, not worrying about wheres the nearest rest room… i go 3 times a day now.. morn, noon, and night… i dnt even wake in the middle of the night that often….i disagree with all these home remedies and probiotics crap…the bottom line is flares trigger when they want, whether your on meds or not.. ppl need to understand that these remedies are not the results of their remission… i believe remission happens on its own… every med or remicade that i took , i still had flares while on these medications… it came and went as it pleased… with this disease you can loose your job ect… cant plan events… you know what i mean.. bottom line is im perfectly back normal… med free…symptom free….. no worries….im going to make this a general message for now on and post on other ppl pages as well…any questions or comments reply to this post or if you want to talk on a personal level you can give me a call any time on mon-tue………… wed,thur,fri,sat,sun b4 330pm

  15. Many thanks Kim, this site has been invaluable and I only found it last year – I wish it was sooner! I know mesalazine is a huge problem for Liam and it was through this site that I was able to suspect his problems were due to this particular medication. (Not only colitis , but low platelets as well – back to normal levels now drug is no longer taken). Also, there was an interesting segment on Borody’s FMT program last night on a program here in Australia called
    Lateline on ABC and clinical trials are about to begin here in Australiain Sydney and Melbourne

  16. Hi Kim,

    Sorry to hear about how sick you have been. I was diagnosed back in 2010. I can talk for hours about UC, and what I have done to beat it. I am doing pretty well. I consult a functional medicine practitioner. They can test you for food intolerances. They can also advise on supplements, and the correct diet. It’s something to consider. I have a daughter, and one on be way; I hate thinking about this disease and how it’s takes time away from them. So I am determined to beat it. Let me know if you want to chat more. Good luck!

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