Proctosigmoiditis

I’m from Vermont, and I’m a stay at home Mom with my 15 month old son. I like putting him in his stroller and going for walks when the weather is nice.

I’ve been struggling with urgency (needing to get to a bathroom ASAP when a bowel movement comes on, usually with little to no warning). I also sometimes have stomach pain and bloating, assuming it’s related to the Ulcerative Colitis.

I was diagnosed with proctosigmoiditis (a form of Ulcerative Colitis) affecting the lower 10 inches of my colon.

I was diagnosed in April 2015 My GI doctor had put me on Rowasa (mesalmine rectal suspension enemas). I went to the pharmacy and remember seeing this huge box and was mortified when I realized what I had to do with the medication. I was even more upset after more doctors visits when I learned I would have to take medicine for the rest of my life.

For a few years the enemas worked.

I could eat whatever I wanted and didn’t have the urgency that I do now. My UC got bad after having my son (January 2018), more so once I started weaning off breastfeeding around January 2019. It’s been flare up after flare up since. I’ve had several instances where I was out with my baby, and had to practically run to a restroom and bring him in the stall with me. I was on a walk once with my baby and couldn’t make it to a bathroom. I had maybe 20 minutes still to walk home and knew I couldn’t make it. I was mortified and just wanted to die. I remember thinking how bad I felt for my son that his Mom can’t even go anywhere without having to go to the bathroom and that she has accidents….how embarrassing.

Also, I stopped being able to retain the enemas. They would expell out most nights. I tried soaking in hot baths to try reducing the inflammation in my rectum so I could get the enemas to stay in, but that rarely worked. After dealing with urgency and not getting much help over the phone through my GI doctor, I decided to do a very low fiber, low fat diet which helped a lot. It prevented me from having to go to bathroom as much. Therefore, I didn’t have as much gas and stool and have been able to keep the enemas in. Still taking them every night. It took maybe 2 to 3 weeks to get symptoms under control with the enemas this time, but the urgency is still an issue. Even when I’m feeling good, having formed stools, and having less bowel movements in a day, those bowel movements are still pretty urgent.

Diet plays a huge factor in how I feel and in my symptoms. When I ask about diet, my GI doctor doesn’t say much and that I shouldn’t need to cut out dairy or gluten, but if certain diet works to keep doing it. With that being said, and since I’ve been doing somewhat better, today I tried eating how I used to….eating higher fiber foods, wheat bread, triscuits, oatmeal with an apple (even the skin on the apple) etc and tonight I couldn’t retain the enemas. I having a feeling I can no longer have gluten or high fiber foods. Does anyone have dietary advice that’s helped you? Any suggestions on what, if anything, helps with getting rid of urgency? Also, taking enemas is really putting a damper on my sex life and relationship. I have high hopes for FMT (fecal matter transplant) I’ve heard about in helping with UC.

Medications / Other Treatments:

Rowasa enemas used to help a lot. Now, not helping so much with urgency, but with most other symptoms. My GI doctor called in Lialda pills which I haven’t picked up from the pharmacy yet. Supposed to take those every morning overlapping the nightly enemas for 4 weeks, then try stopping the enemas. I did try pills before ( can’t remember if it was the same ones) but they didn’t really work. Fingers crossed these pills work. Enemas are so uncomfortable to take, and cause me gas and cramping. I think diet is key. I think low fiber and possibly gluten free will help me.

written by Talia B

submitted in the colitis venting area





FMT, proctosigmoiditis

6 Responses to Proctosigmoiditis

  1. Lisa May 28, 2019 at 4:53 am #

    Wow, Talia – reading your post was like looking through a window into my past. I was diagnosed in 2001 (age 31) while pregnant with my second child. I had a bad case of UC and boy was it scary. During pregnancy I took Lialda and Rowasa. Since then I have struggled with a weak autoimmune system. Not too long after after delivering my child, my UC went into remission for 10 years on no drugs at all. Then as I entered perimenopause, it came back with a vengenace and I was put on Humira. Humira actually CAUSED psoriasis for me which is very rare to happen, so I went off of it at my own risk 2 years ago. I continue to take 4 Lialda pills every night before bed and have remained in “deep remission” for 2 years.
    I’m not ready to flirt with going off Lialda quite yet. I am some 50 pounds overweight – a problem I struggle to solve (especially with 3 very busy teenagers now in my home!). Still, I have seen and see the best doctors – Johns Hopkins, Georgetown, etc. Over the years, I have been guided by doctors to add a probiotic and Turmeric to my diet for inflammation. I take a multivitamin and a vitamin D supplement. Around 2 years ago, I underwent hyponotherapy for IBD patients under the guidance of a doctor at Mt. Sinai Hospital. Most importantly, I work every day to keep my stress under control (sometimes I’m better at it than others). I see a mental health therapist and take a low dose of anti anxiety med.
    As for diet, I have played with it over the years. I have come to the conclusion that sugar is the devil. Flour is not much better. Do I cheat? Sure. And things don’t feel quite right after. My best days have been when I eat as closely to no carb as possible though I found it very difficult to stay on long term – I did make it 2 years on that diet and took off 30 pounds doing it. No doctor of mine has really condoned such a diet for the long term.
    As of today, all is well with my colon. I do have Hashimotos thyroiditis and pretty bad osteoarthritis, so all is not perfect in my universe. Sometimes I wonder if there is a personality type that goes with IBD that when combined with hormones and diet creates a perfect storm. If that is the case, it will be hard to find one cure-all. The answer for me has been a combination of mental health therapy, diet and medication.
    Enjoy those beautiful moments with your young family. No job that you do will ever be harder or more rewarding than motherhood. Pat yourself on the back for it and forge ahead! Just reading your post tells me that you are a wonderful mom doing a great job!

  2. Brenda Bass May 28, 2019 at 8:36 pm #

    Ladies, find a doctor that will prescribe low-dose naltrexone. My husband had UC for 2 years when I researched and found a man whose UC quit with it. I found a doctor and after only 2 weeks his bleeding UC completely quit. He started gaining weight and muscle back he had lost. A tiny miracle pill that makes your gut work with your brain to heal you. It’s cheap and it works!

    • Talia May 29, 2019 at 10:18 am #

      Lisa- Thank you for your post. It’s nice having someone to relate to. That’s awesome you went into remission for 10 years and are doing well now. Though I would be really scared to take Lialda while pregnant. Did they have you do extra blood tests or anything while you were pregnant and taking the Lialda? I’m considering have one more baby but I’m really nervous about going into a flare. I’ve been on Lialda for almost 3 weeks now and have been continuing the Rowasa and I’m doing really well. Been able to eat almost anything without it sending me to the bathroom, but I still feel icky after eating bread or other carbohydrate type foods as you mentioned. And yes, sugar is so bad which is hard because I’ve always had a sweet tooth. Some dairy brothers me also but I can eat things like low fat cheese sticks and be fine. Yes parenting is hard, but so worth it. It’s just hard dealing with flare ups when trying to take care of my son. Fingers crossed the meds keep working and I go into remission! Are you taking a probiotic and turmeric currently? My GI doctor suggested the turmeric but its 4 more pills I’d have to take every day to get the amount he suggested which was 2 or 4 grams I think ..I’d have to check. I also take Viactive for calcium and vitamin D. Thanks again for your post! It was helpful to me and gives me hope I’ll go into remission for a long time!

  3. Lydia July 23, 2019 at 8:10 pm #

    Talia,

    Oh boy, I can certainly understand and sympathize with you! The urgency issue is one of the worst things about UC and also one of the most disabling, embarassing and isolating. It makes it very hard to socialize, travel, work, and go anywhere. I’m sorry you are sick.

    As far as “safe” foods from my experience; I hold fast to a rule that I never ingest anything with more than 4 ingredients – which knocks out most processed foods. I have amazing luck with pumpkin – I get the can’s of uncooked pumpkin when I cannot get a fresh pumpkin and it settles a really bad day of symptoms for me quickly. Make sure it is pure pumpkin, not the pumpkin pie mix. It sounds contrary as it has a high fiber content, but we did a mission trip and this is what they used to treat all digestive issues and it worked like a charm for them so I started using it. I even feed it to my dog – no more food sensitivies or bad breath. So pumpkin works for me, maybe it will work for you?

    Fasting seems to cure the worst days of a flare. Which is not always good because most people with UC eat so little to begin with, but adding food to a system that is already having a horrible time processing food just doesn’t make sense. Also – watch what you drink. I found out that I can only tolerate distilled water, regular water makes me get worse. I also throw in celery juice (only celery, no carrot, no apple) and wheatgrass juice – those calm down a bad day quickly.

    Bone broth is another “safe” food for me. I won’t lie, I hate the taste – I’ve tried everything; browing the bones first, smearing them with tomato paste, herbs, etc.. on a good day I don’t hate it, I just drink fast. It is a good way to get a quick calm down to my issues.

    Also – really fatty, red meat with the bone in and it has to be boiled to death. I have had many people tell me to avoid fat when I am really sick but I get a nice piece of oxtail, lamb, short ribs or the like and cook it until it is fall off the bone soft and eat all of the fat too. I get an instant improvement to my symptoms. I also use a lot of real, pure, whole cream butter – like Plugra or even ghee. A piece of fried chicken will kill me but a mash up of boiled green beans (boil them until they almost fall apart) covered in tons of butter makes all my symptoms decrease.

    I basically live off of pumpkin, boiled meat, really really boiled green beans (cant do carrots, spinach, or anything else green) and bone broth. I am not perfect and I fall prey to temptations all the time but those are my “safe foods”. Make sure you know your “danger” foods too – I was eating boiled potatoes for years before I discovered that they are a trigger food for me.

    People with “food allergies”, dieters, people who make crazy special orders on thier food and had long lists of “things they cannot eat” used to drive me crazy and now I am one… Oh life…

    I LOVE that Brenda said to try Low Dose Naltrexone! I had great luck with LDN, in fact it kind of reset my whole biological, hormonal, metabolic system – It also took away the “moody” spells of menopause (nice way to say menipausal psychotic mood swings) and my metabolism is awesome, I just feel and look better. I’ve been in a pretty severe flare for 7 years, tried it all – Biologics, Lialda, Canasa, Mesalamine Enemas, Prednisone, Sulfasalazine,Cipro, Amoxiclav, I could go on and on. Nothing really worked and some of the treatments had such bad side effects it was worse than UC.

    LDN was the first noticable improvement I have had, it gave me my life back. Unfortunately I had to stop it for a while. There are a small percentage of patients, less than 5% (like me) who quickly build resistance to it – that’s not really a big deal as there are virtually no side effect of LDN but I got to a top recommended dosage for UC and didn’t want to go higher. The top LDN dosage for UC is less than 1/10th of a normal dosage so I certainly could have kept going up but I felt like I want to keep LDN in case I get into such a bad flare I cant get out and need to be hospitalized. My mother died from a colon rupture during a flare that nothing could stop and it always sits in the back of my mind. I am back in my flare (it’s like an old friend by now and I am used to being sick) but I am still not as severe as I was before LDN.

    You may want to look into LDN. I’ll warn you in advance that your gastroenterologist will know nothing about it and will probably disuade you from trying it. I had to go through about 5 doctors (3 gastro’s, 1 GP and an internist) before I found a “functional medicine” doc that knew about it and was happy to prescribe.

    I hope some of that helps! Prayer and meditation when you are feeling really bad and anxious help as well – you will be in my prayers :)

  4. Laura August 4, 2019 at 10:01 am #

    Canasa worked for me. It’s great for tenesmus.

  5. Rosemary Vaughan August 18, 2019 at 2:25 am #

    Having read all your,Posts. I was diagnosed with U/C via,Biopsy on a,Hospital Ward, in 1985(1st time!)&Several times since. Til literally This,Mth. When my Consultant has changed his mind. But I,v a,Solitary internal Ulcer that Won’t Stop Bleeding & I,m Worried That is,Blinding Specialists to focus on it. I,v all the, U/C Symptoms,&am on Pentassa. I,v refused a Colonoscopy! Can someone tell me More,about the,Condition Proctosid…. ? PLEASE. I,v also got PG &am creating a,Support Group

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