Pain in the Rear – Chronic Rectal Pain Actually

Joyce kMeet Joyce:

I was diagnosed 9 years ago with proctosigmoiditis at age 67. I couldn’t believe it, because I had always thought UC was a young person’s disease. My diagnosis of UC was 2 years before my husband died of terminal cancer. We were traveling extensively to MD Anderson Cancer Center in Houston, Texas. We live in Mississippi and we were traveling for scans or treatments every 3 months and intermittently staying in Houston for at least 3 weeks for radiation treatments. We have 3 grown children, 7 grandchildren, and 2 great-grandchildren.

Some more background details:

I have always been very active, worked in public office about 30 years before retiring. I enjoy community and civic activities, traveling, reading, and involved in my church striving to volunteer where needed.

Symptoms:

By the end of my first year of Ulcerative Colitis diagnosis, I began having chronic rectal pain that has plagued me ever since. I have seen 3 GI doctors, who cannot figure out the cause of the pain. I was told I had a slight prolapse, had surgery, and still have the nagging pain. Doctor told me there are so many nerves in this area that it’s hard to determine what is causing the pain. The doctor had me to take physical therapy, thinking it might be partially caused because of arthritis but can see no improvement.

Joyce’s Ulcerative Colitis Story:

I have been very limited in activities, because of this chronic rectal pain. I have been treated periodically with prednisone along with Apriso and Canasa suppositories when having a flare, then continue Apriso and Canasa. My doctor did another colonoscopy this last year and says that I am not in total remission because I still have mild inflammation.

He treated me first with prednisone, Apriso and Canasa . Then he put me on Imuran along with Apriso and Canasa, hoping to discontinue Canasa in a month. Had flu-like symptoms, low grade fever, slight rash, so he took me off Imuran and substituted Mercaptopurine along with Apriso and Canasa. I have been on it about one month, have slight nausea and lack of appetite but side effects are not as severe as the Imuran.

My UC seems to be in complete remission but I still experience the chronic rectal pain. A heating pad relieves it somewhat. Sitting and standing for a period of time makes it worse.

Lying down at bedtime, the pain gradually subsides, and I sleep through the night.

Have been given low dose klonopin and elavil.

Has anyone experienced the rectal pain that I have described? It is similar to a raw sore that has been aggravated by rubbing, and persistently aches and hurts.

I even have an auto heating pad that I use when riding because riding seems to make it worse. I have fits with the pain if have to sit on a hard or un-padded seat. Has anyone experienced symptoms similar to this? I have been given proctozone cream, lidocaine cream, tried Dipentum when first diagnosed, but when have a flare, nothing but prednisone gets it in remission. When my pain began the first year of diagnosis, was having 15-25 trips per day for about 3 weeks.

Medications / Supplements She’s Using:

Besides the Apriso, Canasa, Mercaptopurine, I take a multi vitamin, fish oil, Max Q10, have wondered about Boswellia extract and Olive Leaf extract but doctor says he’s not familiar with these and you don’t know exactly what’s in them. So have not tried yet.

written by Joyce K

submitted in the colitis venting area




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15 Responses to Pain in the Rear – Chronic Rectal Pain Actually

  1. Adam
    Adam February 7, 2015 at 4:41 am #

    Hi Joyce,

    I have felt rectal pain as well in the past. Especially after the initial awful symptoms I experienced before and after my diagnosis when I was using the bathroom 10 plus times per day. With so much activity down there, I have always suspected that the area was simply worn out, and that was the reason for the pain. I don’t remember exactly how long, but it was certainly several months (even after remission) before I felt like all the kinks and painful feelings stopped when having bowel movements, and/or when sitting down at a table for a meal.(especially if I was sitting down on just a wooden bench or something without any padding).

    On another note, you might want to check out a page I created two holiday seasons ago. It is a list of the most popular Amazon products people from this site have ordered. Boswellia is #9 out of the hundreds of products that have been listed over the years, so it might be work checking out. Here’s the affiliate links for those: https://www.ihaveuc.com/10-most-popular-colitis-related-items-on-amazon/

    Let’s see what others say about this pain, I suspect there’s quite a few others in the same boat.

    I wish you well in the coming months, and thanks for sharing your story and picture:)

    Joyce…one more thing, here is a study I just found which might be of interest to you and some others:

    “Rectal afferent function in patients with inflammatory and functional intestinal disorders.”

    An older study from 1996, but might be interesting to print out and show your doctors for their thinking too: http://www.ncbi.nlm.nih.gov/pubmed/8880836

    -Adam

  2. Joyce K February 7, 2015 at 8:53 pm #

    Adam, Thank you for your reply. I have ordered the Ultra Flora 50 billion as well as boswellia extract. Also am taking Olive Leaf extract for inflammation. But I am still on Apriso and 6-MGP, is there any side effects or interractions in taking these supplements with current meds? I see my gi dr the end of the month and seem to be in remission except for this chronic rectal pain. Certainly want to get off meds but feel need to get in complete remission before stopping meds. Any input would be appreciated. Thx for your assistance.

    • Adam
      Adam February 8, 2015 at 8:18 am #

      Hi Joyce,

      Your question about interractions/side effects is an excellent question. I myself don’t have any firsthand experience with coming off 6-MP. I would suspect that there are all sorts of answers across the map on that, but I could be wrong. Maybe you should take a look at the 6-MP reviews page to see if others have documented anything along those lines, and as well talk to your GI about the same question when you meet. here’s the 6-MP page:

      https://www.ihaveuc.com/6-mp-reviews/

    • Bev February 8, 2015 at 8:21 am #

      Good…you got the right probiotic Joyce!! It does not dissolve until in the colon:)

      • Joyce K February 8, 2015 at 10:27 pm #

        Hey Bev, Will keep you posted on my progress. Thx for the post.

        • Bev February 8, 2015 at 10:39 pm #

          Please do, Joyce. Every so often, I don’t hear back from people and I wonder how they are doing.

          :)

  3. Andrea February 8, 2015 at 1:02 am #

    Joyce, my husband has UC and has the same problem. He has had several rectal abscesses in the last few years and a lot of hemorrhoids. When we asked the doctor if that was causing the pain we were told no, that there is nothing there at this time. It is awful and constant. I wish I had answers for you because that would mean my husband would be getting relief too.
    Prayers for you!

    • Joyce K February 8, 2015 at 10:12 pm #

      Hey Andrea, I think I could handle the UC except for this chronic rectal pain. I, too, have internal hemorrhoids, one large, but am told that is not the cause of my pain. I sympathize with your husband’s pain and will contact you if I ever find something that either relieves or eliminates it.

      • Andrea April 21, 2015 at 5:45 am #

        Joyce, this morning I was thinking of my Grandma who lived with neuropathy in her feet for most of her life. Then I realized that her symptoms were very similar to what I am seeing in my husband. I have started researching it and have found a few things I hope lead to a solution or relief http://www.ic-network.com/forum/showthread.php?56454-SYMPTOMS-of-Pudendal-Neruralgia-and-Pudendal-Nerve-Entrapment

        I had 3rd degree tears with the birth of my first child and I had constant pain in that tear until the birth of my second child. It felt like I had been sewn back together wrong and it pulled and shot pain constantly. The doctors all told me the episiotomy stitching looked perfect, as did the healing, but it felt terrible.

        I believe the same thing is happening with my husband, it is nerves that were damaged or have scar tissue that is causing constant firing of the nerves, sending pain signals to the brain.

  4. Kristin T
    Kristin February 8, 2015 at 10:15 am #

    Hi Joyce,
    This past fall I experienced what I initially thought was rectal pain. It was the first time I’d felt this symptom since my UC (proctosigmoiditis) diagnosis 15 years ago. I was not experiencing a flare, but had been on aspirin therapy for 8 weeks after being diagnosed with a blood clot in my lower leg back in August. Once I stopped taking the aspirin, I stopped bleeding immediately, but I was severely iron deficient with a ferritin level of 8. I was exhausted, my joints ached, my hands would go numb immediately upon lifting them above my heart (thought it was carpal tunnel syndrome), and my lower leg where the clot had been felt like there was a pencil inside it. However, the worst symptom was the rectal pain. It hurt to go from a sitting to a standing position the most, and while it wasn’t as painful lying flat in bed at night, rolling over was painful and finding a comfortable position was near impossible. The pain spread to my sacral joints and brought me to tears many times, probably because I wasn’t sleeping well due the pain and the iron deficiency. Soaking in a hot tub helped a little, but ice brought greater, albeit temporary relief. I used a mesalamine suppository at night that did seem to relieve the pain, but so slightly that I can’t be sure. I began to think that I was actually experiencing arthritic pain as opposed to rectal pain and my research led me to a sacroiliitis, which is not uncommon in folks with IBD, likely because our bodies are inflammation wacky.
    On Dec. 24th I had a colonoscopy and my doctor said he saw only very mild inflammation in the sigmoid colon. This was not a surprise to me. As usual, he wanted me to start taking medication, this time Colozal, to prevent inflammation in the colon. However, I believed that all of the symptoms I was experiencing were related to overall inflammation in my body, not just my colon. I don’t want to take meds if I can help it. So once again, I embarked on a cleanse to reduce the inflammation in my body, raise my ph, and detox. I do the CLEAN Cleanse designed by Dr. Alejandro Junger about twice a year and incorporate it’s principles and recipes into my lifestyle more and more each time I do it. Just a week into the cleanse, all of my symptoms subsided. Rectal pain was gone! 2 weeks into the cleanse, I was, as Adam says, “bombing gorgeous logs downstream” and doing this 2 and three times a day for about 3-4 days as the toxins left my body. I not only was symptom free, but my energy level picked way back up and I was skiing, exercising and feeling like my old joyful self again.
    I do not take any meds for my UC and haven’t for 12 years. I found most didn’t work and that food is a much better medicine for me. I follow a SCD type diet and I haven’t had a flare in two years and when I have had one, it’s mild and I can always relate it to sugar in food or drink (wine is a weakness and a culprit for me). Again, while I used to focus on preventing or stopping a flare, now I focus on overall body inflammation. I am now incorporating tumeric and ginger in my daily diet by adding it to a honey I put in tea. You can find lots of recipes online for this and other concoctions that use these powerful anti-inflammatories. I’ve replaced coffee with dandelion root/chicory coffee which is a powerful liver function aid. I make a latte in the blender with it and coconut milk, ceylon cinnamon and stevia. Sometimes I add cloves or cardamom or allspice. http://elanaspantry.com/dandelion-root-coffee/. Chicory has many health benefits as well. https://www.organicfacts.net/health-benefits/herbs-and-spices/health-benefits-of-chicory.html. I take a probiotic on an empty stomach every morning and then drink a tbsp. of EVO after about an hour. Then I drink a healthy smoothie about a 1/2 hour later.
    I know that many folks suffer terribly with UC and that I am one of the lucky ones whose disease is, so far, localized to the sigmoid colon and manageable with diet. Joyce, you didn’t mention diet at all in your post. Is diet modification something you engage in, or, if not, would you consider it? I believe that medical science has only scratched the surface on the complexities of this disease. Most docs want to treat UC solely as a digestive disorder (even though most don’t believe in diet alterations for symptom relief), however it’s becoming increasingly clear that at the very least the nervous system and the fibrinolytic system are involved and likely their is a link at the cellular level. All of our systems must work together for optimum health and this happens on a very individualized level for each of us. I have to wonder what the effects of all the medication you have been on or are on are doing to your various systems and whether or not you too might be able to manage flares and inflammation by diet alteration (if not already) and removal of all the toxicity in your body that results from so much medication.
    See Pubmed for info on sacroiliitis and UC. http://www.ncbi.nlm.nih.gov/pubmed/6215968

    • Joyce K February 8, 2015 at 10:24 pm #

      Hey Kristin, Thanks for your suggestions. I am new at diets, since 3 gi Drs told me food makes no difference. But I’ve found that sweets (my weakness), dairy products, fried and spicy foods are the ones I have to try to eliminate. I am looking into the SCD diet but do not need to lose more weight. Will look into your other suggestions, as well. I am taking the probiotic Bev mentioned in her post, as well as boswellia extract that Adam mentioned, olive leaf extract, CoQ10, fish oil, vitamin D, but don’t know if any interractsc with 6-mp, since dr just says supplements are not recommended, so no help there. I’m no dr but am ready to try alternatives to try to eliminate the 6-mp treatment, have had no side effects yet but am at the age that I don’t feel comfortable taking this. Will let you know how I progress (hopefully positively).

    • Joyce K February 13, 2015 at 9:09 pm #

      Hi Kristin, Did you start the colon cleanse even when you were taking meds prescribed by your dr? I’m wanting to start the cleanse along with the dandelion root/chicory tea and EVO. But don’t know if should wait until I get off meds or if can do it all at same time. My gi dr will be of no help because he says supplements are not regulated and he does not recommend. So I will just have to decide on my own when I start with anything. Is EVO the brain memory supplement that you mentioned? I could certainly use that, ha. Thanks for any info on starting your suggestions now or have to wait until in complete remission and off meds. I’ve started trying to eliminate sugar and wheat from my diet also, but am a novice at this, too.

  5. Ellen September 14, 2017 at 1:03 pm #

    Hello,
    I am new at all of this, having just been diagnosed with colitis. I have radically altered my diet to practically eliminate fats. Recently I have experienced the intense debilitating rectal pain you all have described. I called the G-I clinic and was prescribed “Proctofoam”, a hydrocortisone product. After using it over a 2 day period, I feel very little relief. Today I was reduced to tears over the intense pain. Any advice from anyone is welcome at this point. I was active and eating a normal diet just months ago. I want my life back. Help!

    • Andrea McRae October 1, 2017 at 7:53 am #

      Get in to your doctor. Make sure you haven’t developed an abscess. If you have it may require surgery. I’m so sorry you are going through this

  6. Joyce K
    Joyce October 1, 2017 at 6:49 pm #

    I, too, have chronic rectal pain for about the last ten years, began about a year after Ibwas diagnosed with UC. Have seen 3 gi drs, was told when inflammation cleared up, the pain would subside. Had surgery for a rectal prolapse but pain continues. Am now on remicade and have been told I’m in remission, that the pain must be due to nerve damage but no test to pinpoint location of the pain. A heating pad relieves it more than anything else. No solution at this point, it is absolute misery, it is not as intense as it once was but still deal with it daily.

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