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63 Year Old UC Patient

63 Year old colitis patient

Intro:

As a 63 year old female, I quickly learned that having UC was rare for someone my age. I had a heck of a time getting a colonoscopy scheduled that wasn’t routine. We’d recently moved so it was a challenge to find a GI doc and even though I explained about the bleeding and tissue/mucus discharge, it was explained away as hemorrhoids and IBS. Well. That all changed quickly at the colonoscopy. I currently have eight inches of UC proctitis that has been flaring for three months.

Some more about me:

Originally from the Bay Area, we’re now in Boulder, CO and love it! I had expectations of buying a new bike this summer and hiking some of the many trails around our home, but looks like that may now have to wait till next year.

Symptoms:

Currently bleeding mostly in the mornings and at night. Some cramping, but I think I’ve identified that as a new dairy sensitivity. I’m avoiding dairy for now to check that out, and I suspect it could be age related. Still have tissue/mucus discharge, but it’s now diminished (I know, I know, it’s supposed to be all mucus, but it sure looks like tissue to me!)

63 Year Old UC Patient

After being diagnosed from my colonoscopy, I was prescribed nightly Cortemena enemas and VSL#3. I did that for two weeks before my next appointment, but frankly, didn’t see any improvement at all. At the second appointment, I learned that my doctor would be on vacation for the next three weeks, and he said to just continue what I was doing until he came back. I was getting weaker and sicker, with no decrease in bleeding at all.

I was finally able to see my PCP just last week and she went into action. I’ve now been on a prednisone burst and Cipro 500/mg/2x/day. I don’t bleed at all during the day now, but still have bleeding in the am when I wake up, and for some reason it seems to start again as I get ready for bed. One of the concerns I had with my GI doc (which for some reason he didn’t understand) was my lack of diarrhea. In fact, I couldn’t go to the bathroom AT ALL. My PCP explained that most people hold their bowel down low, but I apparently hold mine quite high in my colon, and it could not get past the swelling. So I now have to keep myself on the side of diarrhea — nightly miralax, MOM every 2-3 days, and prune juice. And it’s worked well. That’s a relief.

I’m still doing the nightly enemas, but I think they’re not affecting anything. The prednisone has been great for me, as my symptoms started to resolve in just 48 hours. I do worry if there’s more that can be done to really shut this down after the prednisone burst. And does that really end it? I’m not sure what happens after.

My husband has been amazingly supportive. We had so many plans for this summer and he’s not complained at all about our cancelled plans. He just wants me to get well so we can move on.

My big concern now is overwhelming fatigue. It seems if I’m on my feet more than about 20 minutes I have to sit down. I’m sleeping every afternoon for at least two hours, and I’m even sleeping through most of the night, in spite of the prednisone. I’d welcome any advice for boosting my immune system for more energy. I’m a very healthy eater (lots of fruits and vegees, but not crazy) and, except for dairy, don’t think I’ve had any problems with food. I saw the video for Adam’s smoothy and will definitely be trying that!

I think my GI doc is a joke. He’s maybe good at looking up your butt to diagnose, but during the six weeks since my colonoscopy I’ve not had one phone call from his office to ask how I’m doing. I see my PCP again next Monday, and have an appointment with him on Tuesday. At that time I expect he’ll have me start to taper off the enemas and I’ll be done with him and just continue with my PCP for now.

The good news is that I’ve read that for older UC patients it may be harder to treat, but once it’s gone it’s likely not to come back. That is my expectation!

Medications / Supplements

Cortemena enemas, nightly, no effect that I can see
VSL#3 – discontinued for now. May start again after flare ends
Prednisone burst – 40 mg/x4 days, 30 mg x4 days, 20 mg x4 days,….
Cipro – 500 mg/2x day, for 10 days
Currently avoiding dairy to see if I have an age-related sensitivity

written by Susan B

submitted in the colitis venting area




20 Responses to 63 Year Old UC Patient

  1. Nikki in Chico
    Nikki September 3, 2014 at 12:51 am #

    Hi Susan,
    Sounds like the Prednisone regimen they have you on is not too bad. I’m like you when I’m flaring, with my symptoms worst at night and in the a.m., mostly constipation/mucus/thin tissue/globs of blood. Thanks for sharing your story. Mine started 20 years ago, with more ups than downs, thank goodness! :)
    Nikki

    • Steve September 3, 2014 at 2:21 pm #

      Hi Susan,
      I wanted to share with you that VSL#3 has been a life-saver for me! I’ve been using it for 1.5 years now and have had excellent results. I started with the Double Strength version, which requires a prescription and is pretty expensive. It took almost 2 months to work (about twice as long as the company predicts), but once it kicked in it got me into remission. Then I was able to cut back to the capsules which are a lot less expensive than the Double Strength sachet. I asked the manufacturer how many capsules to take per day and their advice was to listen to your body and adjust your dosage if/when symtoms change.

      I know it’s not a panacea and doesn’t work for everyone. I noticed, however, that you tried it for only 2 weeks. Perhaps if you give it a longer trial you may get better results.
      I wish you the best.

      Steve

  2. Adam
    Adam September 3, 2014 at 1:02 am #

    Hi Susan,

    Thanks so much for taking the time to share your story with all of us. A couple of suggestions that I’d consider based on your story:

    1. Spend some time figuring out a new GI doctor. It’s gonna be real important to have someone who you trust and who you respect in the years to come. Sounds like the current GI doc you’re with is nothing special at all, and that’s unfortunate, but it does take some time and effort on our part as UC’ers to find someone where there’s respect/trust/etc… both ways. (but once you have that its worth the time and effort to find.:)

    2. Keep on eliminating the dairy if that is working for you. Many UC’ers notice positive improvements once getting rid of that. I myself eat only small amounts of hard cheeses every once in a while and will sometimes go a week or more with absolutely no dairy at all…and seems to work real well for the past 3-4 years.

    3. As for gaining energy, that’s always a super tuff one. When our bodies get beaten down from constant UC symptoms that last for several weeks and even months for some of us, it’s always going to be difficult to get the energy back. Good news is it for sure does come back, and long rests throughout the day will not be needed forever. But it takes time. And sometimes it can take several months to fully regain your energy. I personally believe it goes hand and hand with the colon and our GI systems healing themselves from the inflammation that goes along with UC symptoms and the other added bonuses like weight loss, inefficient digesting of foods, blood loss etc…
    (Oh yeah, a blood test can also reveal quite a bit of good info to a trained doctor about why you may be super low on energy. I’m guessing you’ve had some of those recently, so might be interesting to start pulling up those charts and the dates on them and comparing.)

    I hope you continue to progress and get back to where you want to be with your health Susan. And a massive big pat on the back to your husband for being so supportive of you and your current health setbacks. You’ll be biking and doing the things you had planned on before too long.

    best,
    Adam

  3. Dallas Killough September 3, 2014 at 3:16 am #

    Hey Susan,

    Sorry to hear you’re having issues with UC. You’re issues sound similar to mine. Lots of blood, mucus, and bits of tissue. I flared for a year and a half. Like you, I was prescribed enemas (Rowasa and Cort Enemas) and it took a long time for them to work because there was so much swelling and inflammation. I used them religiously every night for a few months and finally it started to take effect. Just make sure you squeeze all the excess air out before use. I also wore a nicotine patch and chewed nicotine gum and I was in remission in no time. Make sure if you ever use enemas again that you lay 5 minutes on each side and your back for it to fully coat the lower colon. I did stop all dairy and added a good prebiotic and that certainly helped, but it took time. I also added a calcium supplement as well. Now, I am almost a year and a half in remission and still notice improvement every week. Good luck on your journey! You’re not alone and it definitely gets better. My life is back to my pre colitis days.

  4. Paulette September 3, 2014 at 9:45 am #

    Hi Susan
    I’m one of the “oldies” who got Diognosed at 60 years old 3 years ago.
    It’s been a weird and exhausting journey.
    The doctors told me also that this disease was unlikely to hit an older age group, yet here we are!
    I don’t know if that is standard verbiage but through this site and HealingWell.com I have learned that there are plenty of us diagnosed in this age group!
    I presently take Apriso, Uceris, Mesaline enemas and follow the SCD diet as well as I can.
    It’s not easy, and for me I have had a few remissions but I just got over another really bad flare and am on the noted meds.
    Wow, that does sound unusual not to have diarehea….. good break!
    I would love for this to go away as all who have this does , never say never!.
    I never took prednisone, because from comments I read te symptoms were pretty daunting. But if it’s working for you, and keeping you stable thats good.
    I’m a believer of the diet SCD . I think I would be a lot worse if. Didn’t follow it.
    Did the doctor really indicate tat ecause you were in an older age group, the symptoms might not be so severe and disappear!
    I sure wish that were true for me

  5. Camille M
    Camille September 3, 2014 at 2:37 pm #

    You mentioned you were on Cipro and off of VSL 3. You should not go off the VSL 3 because the Cipro will make the imbalance of bad/good bacteria worse. I have never heard of Cipro being used to treat UC. I would try going grain free asap, because that is a huge inflammatory for UC. Grain is like sandpaper in the colon, so if you are having problems, grain will exacerbate the irritation and inflammation.

    Lastly, try just taking magnesium for constipation. Our food supply is practically void of this now, and we need it. How much? Each person absorbs it differently, so keep upping the dose until you have loose stools, then back off to the prior dose. It is magic! Scary that so few doctors know how important that is, but good old milk of magnesia had it right! Good luck finding a good GI and don’t settle!

  6. Kristen September 3, 2014 at 6:54 pm #

    Hi Susan,

    Sorry to hear about the new diagnosis. Adam made a good suggestion to look at your blood work. The main reason why I was so tired was because I was anemic. I started taking iron pills and noticed a drastic increase in my energy level, even though I was still flaring. Good luck on your search to find a good GI doctor! I hope you get your flare under control very soon!

    Kristen

  7. Joanne Hooper September 3, 2014 at 11:05 pm #

    Susan,
    I am also 63, and have been dealing with UC for 3 years. I just spent 20 days in the hospital due to severe symptoms and I am weak as a new born kitten. I am on a boatload of meds to try to save my colon. My doctor ordered probiotics while I was in the hospital : I take it 3 times a day.
    Everyone here has made very good suggestions. I did not have good GI doctors. I had one that wanted me to have another colonoscopy “in 3 weeks” when I had severe bleeding. I fired her on the spot and now travel 2 hours to my new GI….it is worth it.
    Be your own best advocate and find a great GI ! I wish you well in your recovery,
    Jo

  8. Susan B
    Susan B September 9, 2014 at 3:05 pm #

    UPDATE: Wow, I’m blown away with all the positive comments. Thanks a bunch. I need the encouragement today. Both my PCP and GI doc are trying to wean me off the prednisone and it’s not going too well – this morning I was especially tired, but with a little rest (and small 2.5 dose of prednisone) I’m feeling better now. Since my original post, my respect for my primary care doc has climbed even higher. I now see her every two weeks and she’s staying on top of everything. HOWEVER, she really likes working with the GI doc I was seeing. She thinks he’s innovative and he has worked with her on some very difficult cases, and she doesn’t yet want me to switch yet to another GI. I like her so much, and because she’s paying me so much attention, I’ll stick it out with him (which is really no big deal because he pays me no attention at all!).

    The enemas really had no effect on me, so I’ve been able to stop them. I’m now taking Apriso and that seems to be working well. I have very little bleeding now, much on the order of how Nikki describes in her post – mucus globs, just a little bleeding with poop. But my poops are still very ropey and I wonder how long before that swelling goes down. When I saw my doc last week she said it could be months.

    As for getting my energy back, my doc wants me to take a packet of Emergen-C twice a day. It’s kinda like a super-charged vitamin, with lots of nutrients, including magnesium and electrolytes. She says that the Boulder, CO area is the immune-suppressed capital of the world (because of so many extreme athletes here) and this is what she recommends for them. Also, Camile, she wants me to avoid grains. I knew that might be coming, based on so many other comments, but it’s hard for me. I just love a good hunk of hearty bread! My two week experiment with no dairy seemed to have no effect, so I’m not avoiding it any longer, but not overdoing it, either.

    I have a big appointment next week with an allergist. I have a skin condition called dermatographia, which is basically an inflammation of the skin fascia (also called “skin writing” disease – I can write my name or draw pictures on my skin). Since I’m pretty sure that I’ve had undiagnosed colitis my whole life, I can’t help but think there’s some inflammation-related relationship. I’m looking forward to this and learning what triggers to avoid.

    Thanks again for the comments. Gosh, who knew that so many of us oldsters were developing UC?

  9. Judith K
    Judith Kupstis October 28, 2014 at 5:57 pm #

    I am 62 and have had UC for 28 years. Finally j pouch surgery is the option for me. I know there are so many more options out there now, than there when I was first diagnosed back in 1987. I totally agree with so many here, that to find that GI Doc that “Cares about You” is key to managing this disease and it’s many twists and turns!!

  10. Karen Gonzales September 3, 2015 at 10:09 am #

    Hi Susan – I’m late to respond. Hope all is well with you. I was diagnosed at age 60 as well around 6 months ago. What a shock. I didn’t see it coming. I’ve had difficulty getting into remission. I’m much better than I was earlier but I need to gain weight and have more normal BM’s. I echo what others have said. I tried SCD but found it too restrictive. I’m using the Paleo Diet approach which excludes grains, dairy etc. it’s similar to SCD. Danielle Walker’s Against All Grain Cookbook has been invaluable. Check out her website. You’ll hear – what works for one person doesn’t for another. It’s all so true especially when it comes to diet. I take VSL and a list of supplements. Doctors don’t have all the answers. I was fortunate to find a good nutritionist/life coach. I tried acupuncture, it didn’t do much for me. Acupressure is fantastic. I try to be calm and go,with the flow,after years of a stressful job and commute. ALL THE BEST!

    • Camille M
      Camille September 3, 2015 at 5:30 pm #

      Karen,

      How did you find a good nutritionist-coach? I am in need of one as is my husband, who has GERD under control but the meds have made him gain 40 lbs. Most importantly, I have been in a flare since early May and have had little improvement. I have become allergic to many of the meds they tried, and my low residual diet isn’t working as well as I’d like. It needs tweaking by someone who knows nutrition.

      Can you suggest any links or organizations that may have nutritionists who know about GI issues?

      Thanks1

  11. Karen Gonzales September 3, 2015 at 7:17 pm #

    Hi Camille – So sorry to hear about your flare and your husband’s weight gain with GERD meds. I empathize for you both. Diet and nutrition can be tricky. My GI is good but he hasn’t been psrticularly helpful in this area which is why I sought extra help.

    Actually, I found my nutritionist by using good old Yelp. I read reviews and then researched a short list of candidates. I live in the Bay Area and location was important. I was fortunate to find Kathryn Chess who practices out of her home which is very close to my place. Her website is: http://www.kathrynchess.com or google her to get a sense of her experience. She not only helps with nutrition and supplements but she’s given me knowledge of meditation techniques, recipe ideas and she does acupressure. Prior to getting sick, I ate out a lot. I’ve had to learn how to cook in the last few months. Kathryn has helped me do that.

    I sent your note to her and asked if I could refer you to links and organizations. She’ll get back to me and I’ll let up you know either way. For now, thought I’d respond quickly to your note. I’ll be in touch.

  12. Camille M
    Camille September 4, 2015 at 5:17 am #

    Thank you very much, Karen. I use yelp for everything else, but never thought about using it to find a nutritionist. I live in the suburbs of Chicago, but anything alternative is not very popular out here. I think a good nutritionist Nice to be able to think outside the box a bit. I am Crossing my fingers!

  13. Karen Gonzales September 4, 2015 at 7:22 am #

    Hi Camille – Feel free to call Kathryn, her number is on her site. I let her know about your question. I advised her of where you live. You may want to check on Naturpathic Doctors. They have a similar approach, using supplements.food allergy tests etc. Not all states allow for ND licensing. Not sure about Illinois.

    Have you heard of Danielle Walker and her Against All Grain Cookbooks and her life story? Google her too and check out her site. She was diagnosed with UC at age 22. She’s been through a lot in terms of medications and multiple flares. She tried SCD which worked for a while. Being an expert cook or chef, she developed healing recipes that are Paleo-like. For her, no sugar, no dairy, no grain has helped. I think she’s med-free at this point. Her cookbook has been invaluable to me. I lost way too much weight on SCD.

    Wishing you all the best. Hope everyone on this board finds a way to heal. It’s such an individual journey. Makes it a challenge but we’ll get through and will be better as a result. Being new to all this, I very much appreciate the IHAVEUC site. Lots of positive support and vibes.

  14. Camille M
    Camille September 4, 2015 at 8:20 pm #

    Thank you for the info, Karen. I have been Paleo for several years. Actually, Danielle’s cookbook recipes made me worse, not better, so I haven’t had a lot of luck lately. I’ve been on a low residual diet since May with little improvement, and I think I’m the only one with ulcerative colitis who actually gains weight. I have found that if I cheat and have something of substance, my symptoms get much worse. I pretty much live on soup and smoothies. My blood sugar is high, mostly because I can’t move a lot because when I do, I just run to the bathroom. That is why I need a nutritionist, because I think I’ve reached the end of my resources on my own.

    I will give Kathryn a call. I really appreciate your help and am encouraged that you found help with a good nutritionist.

  15. Karen Gonzales September 4, 2015 at 9:08 pm #

    Camille – This is such a cruel disease. I’d give anything to gain weight more quickly. I think I’m on the right path but not sure. All I know is that doctors don’t have all the answers. UC meds are horrible. I figure, why not seek additional support whether it be a nutritionist, naturopath or something else.

    Did you try SCD? So many seem to benefit from it. I wish it worked for me but the restrictive aspect was too much. My weight loss has been scary.

    I don’t want to put out false hope. I feel like I’m heading towards remission but I’m not quite there. I think Kathryn filled a gap and I continue to work with her. I hope she can assist you. Take care.

  16. Camille M
    Camille September 4, 2015 at 9:17 pm #

    Karen, I think you are on the right path. There is no one magic answer that fixes this disease. You have to combine lifestyle, diet, meds and supplements to get everything in line.
    The SCD/Paleo diet worked for me for a few years, until this flare, which started, literally, overnight and it is not working at all now. Everything I eat has to be mushy or puréed or liquid or I just get worse. I just can’t figure out how somebody can gain weight with a diet like that, and addition to being so ill. Hopefully, I’ll get some answers.

  17. Susan B
    Susan Bogatin September 7, 2015 at 10:45 am #

    Update from now-64 year old with UC :

    I’ve seen some recent posts and thought it might be good to post an update. It’s been a rough journey these past 18+ months. Due to the incompetence of my first doctor, my disease spread a bit further and now involves about 12-13 inches. I’m on my third GI doc, and have finally found one that is kind, sympathetic, and knows what she’s doing. In fact, her husband has Crohn’s! Her GI medical group also has an active CCFA-sponsored support group that meets once a month. If you can find one of these, I strongly encourage you to attend. They have been informative and supportive, and allow me to feel like I’m not alone in this.
    Since my last post, I’ve tried Apriso and had a second round of steroids. Neither of those had the effect I would have liked. I’ve had no active bleeding for several months now, but had uncontrolled mucus, some seepage, and whatever that other sludge-type discharge is (does anyone know what that is? Intestinal lining, perhaps?). I’ve been taking Lialda (full dose, 4.8 mg) and using Canasa suppositories every night for about nine months now.
    Due to still having lots of discharge, we’re now trying Uceris for 60 days. I’m currently on day 13. Surprisingly, the mucus is completely gone (and it was quite bad), the seepage is much better, but the sludge-like discharge seems to be worse. I’m hoping that this is somehow due to the shrinkage of tissue, but I could be fooling myself. I read lots of reviews about Uceris before starting it, and it’s effect seems to be about 50/50 – 50% of people will have great results (even remission), and the other 50% don’t have much change at all. I’ll take it for the full 60 days, but as time goes on I’m less optimistic. BTW, if your doc suggests it, don’t be put off by the description that it’s a steroid. My side-effects are minimal and easily tolerated.
    The next step for me will probably be Remicade, which is what I’ve been trying to avoid. I feel that the biologic slope is quite slippery, and I’m concerned that at my age the chemo-therapy might be worse than the disease. (Honestly, before I start Remicade, I may try CBD oil. I live in Colorado, so if I can find a good medical dispensary, it should be easy to obtain. CBD oil does not contain any THC, so you don’t get high, but I’ve read some reports of it’s calming affect on the gut. I’m going to check out the dispensary in Colorado Springs that has developed Charlotte’s Web, the CBD oil used in children for epilepsy, with great success).
    I’ve seen a great allergist, and we spent several months eliminating foods and recording results. In the end, the only thing we can specifically point to is dairy, which seemed to make the mucus worse. I’m now also taking Emergen-C daily. It’s been a life-saver for my energy level. Several of the people in my support group are also taking this daily. Otherwise, there seem to be no specific positives or negatives to my diet, so I just try to eat healthy (lots of fruits and vegees) and limit red meat.
    When I finish the Uceris I will write a full report on the Uceris section of the website.

  18. maddy September 7, 2015 at 2:15 pm #

    Usceris — supposedly 90% of it goes into the gut. That’s what’s good about it. Good luck managing your UC.

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