Back to the GI doctor’s office

Monday I found myself in a place that I hadn’t been to for a very long time: my GI doctor’s office. After having permanent ileostomy surgery for my UC, I wasn’t sure if I would ever need to be seen there again. However, for the past ten months, I have had canker sore-like ulcers show up on my stoma off and on in different places. I actually noticed the very first of these ulcers while changing my appliance on a backpacking trip last June. I remember calling for Doug through the woods so he could come snap a photo of it. I think he thought I was being cornered by a bear! (joking)

That ulcer was rather deep, and after showing a photo of it to my surgeon, he thought it might be trauma-related and caused by a nick in my stoma. It healed up in a few weeks, and I thought that was that. However, in the autumn I got a couple more ulcers, and since that time, I have had more of them show up and at more frequent intervals. In fact, I have a new one today. The ulcers heal quickly (sometimes too quickly– it is hard to time an appointment with my doctor when they are actually there) and don’t seem to cause any problems. Because the ulcers are a recurring issue, I shared more photos of them with my surgeon and he suggested I have them further investigated at my GI doctor’s office.

I have an awesome GI doctor, but for much of my life with ulcerative colitis, I worked with an equally amazing IBD nurse practitioner. When you have chronic conditions and end up seeing your doctors and nurses again and again, you can really develop a strong and trusting bond with them. My nurse practitioner is a very caring individual and she has worked with me during my worst UC moments. I hadn’t seen her since I was extremely ill and lying in a hospital bed during my final severe UC flare two and a half years ago. It was great seeing her again under much better health! Of course, last week’s ulcers had conveniently healed just in time for the appointment, so I once again had to rely on photos of the ulcers to explain what was going on. Thank goodness Doug is a stoma portrait photographer extraordinaire and we have been documenting the ulcer activity pictorially for months.

After looking at the photos, my nurse felt that the ulcers could be a sign of active IBD. She didn’t call it Crohn’s disease, but said that the ulcers are likely caused by the same inflammation process involved in IBD in general. She talked about how many different genetic factors are showing up in research related to IBD. What is thought of as Crohn’s or ulcerative colitis could actually be a group of different diseases which makes things hard to pinpoint in some cases. (This is my recollection of what she said anyway… I am not the best at explaining medical stuff from memory.) Regardless of the name, the suggested treatment for me was the same: a low dose of Pentasa to see if it helped resolve the ulcers. If the drug does resolve the ulcers, it would be a sign that I am dealing with IBD. If  the ulcers would actually cooperate and show up when I am scheduled for an appointment, I could also get them biopsied to provide a more definitive diagnosis. There is also a possibility that the ulcers could be caused by a virus, but that is less likely due to the recurring nature and how long I have been experiencing them. All in all though, this is a really minor thing. The ulcers seem confined to just my stoma, no other symptoms come with them, and I feel great. My inflammatory markers were fine as well. My nurse said stoma ulcers do happen for many people without progressing up the intestines. That was great news to hear.

When I was sitting in the pharmacy waiting to have the prescription filled, I found myself reflecting on the possibility that my disease was returning– even if only mildly. The weird thing was– I was not worried about it at all. I always thought that finding out my IBD might be back would be terrible news. I would have expected to be scared, disappointed or something along those lines. However, now that I was actually facing that possibility, all I felt was a sense of calm. For someone who has been plagued by anxiety lately, this new found feeling of peace was refreshing.

I didn't expect to read "for inflammatory bowel disease" on a medication label again!
I didn’t expect to read “for inflammatory bowel disease” on a medication label again.

I really can’t put my finger on the one thing that has led to this new outlook. Be it bones or intestines, I am discovering that I am far less worried about my medical issues lately– so much so that I was able to stop taking anti-anxiety meds over a month ago. I went to see a counselor and also went to some anxiety management group sessions which have helped me look at things in a new way. My mindfulness meditation practice has been important in helping me focus on the present too. The positive thoughts and prayers sent by family and friends have also been paramount. I have also been more in touch with my spiritual side which has brought peace.

Another big source of comfort is knowing that I have been blessed with some of the most incredibly kind and skilled doctors and nurses on the planet. Not a day goes by when I don’t think about how grateful I am that everything somehow came together to have each of these individuals on my healthcare team. I know they truly care about my well-being. I can relax knowing that if things should get worse with any of my health conditions, I am in really good hands.

Overall, if I had to sum up the reason I am feeling so good about things lately in one word it would be this: trust.

I trust that I am strong enough to get through anything. I trust that my family and friends will be there to lean on. I trust that my medical team will do their absolute best to take good care of me. I trust that I will always be able to help others by sharing my experiences. And I trust that whatever path I find myself on, I will make it the best journey possible.

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17 thoughts on “Back to the GI doctor’s office

  1. I had a similar reaction when I was in the hospital from my first obstruction a week or so after having my ileostomy surgery. One of the hospital doctors (not having fully read my chart) came in and told me that the reason for my inflammation could be one of two things. One reason she stated was that I might in fact have Crohn’s and the second reason was what she called “back wash colitis” or something similar to that… back flush… idk, I’ll have to google it, but anyways she said that I’d have to be put on infusions in order to take care of the inflammation. At this time I knew I didn’t have Crohn’s because of the pathology report, but this “back wash” colitis, I’d never heard of before. I just remember saying, “Oh, ok. Ok.” And I meant it. It was a very unusual feeling to know that I was ok with it, even though I had just elected to have this operation in order to get rid of my colitis a week earlier, only to develop it in my small intestines.

    I’m sorry to hear you are having trouble with ulcers on your stoma, but I’m so glad you are taking the news in stride! We (people with IBD) are really quite strong people with everything we’ve been through–makes us better fighters 🙂

    My thoughts are with you.

      1. Thanks Megan! I remember my GI saying I had that too, only way before my surgery. It showed up in one colonoscopy a couple of years before my UC got really bad. At that point, I had inflammation in the lower section of my colon toward my rectum, and then I had a random patch up at my terminal ileum. I remember asking my GI doc if it was Crohn’s because it had skipped a section, and she said, no, but that I was likely dealing with backwash ileitis. I remember the doctors were talking about that before my surgery too because they were trying to rule out Crohn’s. All my pathology reports were always negative for Crohn’s too. I didn’t realize that backwash ileitis could still show up after the operation. Are you still on meds for it? Do they help? Did your doctor say it would progress without the meds or just likely keep causing ulcers on your stoma? I haven’t gotten any inflammation with mine that would cause a blockage–just the ulcers. I will have to ask my doctor about this. I too am not worried about it because the past 2.5 years since surgery have been amazing and I feel so well. A few ulcers feel like no big deal to me at this point. Thanks again or sharing your experiences with me.
        -Heidi

  2. Silly story….I don’t actually know what ended up causing the inflammation. Every day I was in the hospital a new hospital Dr. would come in and say something different. Made for a very confusing hospital stay. Luckily I have a follow-up appointment with my surgeon tomorrow to discuss everything from my second hospitalization for the second obstruction. My gut tells me my intestines were simply inflamed from my operation and I dont have backlash. But we shall see tomorrow when I meet with my beloved surgeon.
    Oh and I haven’t had ulcers on my stoma. Sorry for the confusion. The Dr. said the inflammation was reason enough to suspect backlash and/or Crohn’s. But I do not have Crohn’s–this I do know 🙂

    1. Good to hear that you don’t have any ulcers. I know my intestines were swollen after surgery, so it sure does seem like the blockage could be related to that instead. Did you find anything out? Great blog by the way! I really enjoy reading it.

  3. Poxa, que chato, tenha f em Deus. Tambm tenho uma ileostomia por motivo de uma Retocolite Ulcerativa de 18 anos, e sinceramtente fiquei preocupada com a possibilidade dela voltar. Mas vamos ter f em Deus!!! Espero que voc melhore logo. Um abrao, e um timo final de semana!!!!

    1. Thank you!!! I do have faith that everything will work out. And really, it seems that so far these ulcers are causing no trouble at all. I feel absolutely great and have no reason to believe that anything else is even going to come of them.

  4. Heidi…
    Your blog couldn’t have come at a better time, as I’m getting ready to leave for my 6th surgery in two years…keeping the positive attitude going during this journey has been tough at times, but words like yours always help to remind me how lucky i am.

    Eileen

  5. Wow…what a timely post! I had surgery 12 days ago, and around the middle of last week noticed some random white patches on my stoma in various places. They sound similar to yours, but maybe bigger…and they have dark spots mixed in with them. My intestines and stoma are swollen….stoma is VERY swollen. My surgeon says it’s because I was/am so malnourished that my healing is effected by it and will progress differently. Anyway, she said the spots are ulcers, maybe caused by trauma, or the home care nurse putting my wafer on too tight (and I changed that wafer the other day) i am still kinda worried about it and am keeping in touch with the surgeon and WOCN to see what it could be. I would hate for it to be Crohn’s, or anything serious….but after everything else, I guess I’d just deal.

    On a side note….do you have a post somewhere about how you make your pouch covers? A friend wants to try making me some and I thought I could show her what you do. Thanks! I will likely have more questions for you as time goes by….I love to hike, camp and backpack and will need LOTS of tips, I’m sure. Your blog rocks!!!

  6. Hi NCchic,

    Thanks for writing. Sorry to hear you have the white spots too. I think you are doing the exact right thing by staying in touch with your surgeon and nurse about them. Just keep documenting when they show up and take photos. That is exactly what I did with mine when one first showed up last June. As I wrote in the post, mine were originally thought to be from my wafer cutting into my stoma. However, because they have kept up and have shown up on places that don’t really rub on my wafer, we are looking into other causes. Right now my GI nurse is leaning towards IBD activity, but they could be from a virus or something else. The bottom line is that they are not causing me any trouble other than making my stoma look a little funny sometimes. I feel so great and have no pain or other IBD symptoms with them. Try not to worry too much. It sounds like you are in excellent hands with your medical team and they are there to help you out if anything comes up. White spots or not, you are going to feel so much better once you heal up. Even if I ever ended up with full on Crohn’s (which I still think is highly unlikely), I would not regret my ileostomy surgery for one second. It has made my life infinitely better.

    You are still so soon out of surgery and you very well may have gotten your base plate too tight. I didn’t have ulcers right after surgery, but my stoma was very swollen for 6-8 weeks. I had to make a new pattern for the hole in my wafer every time I changed because the swelling continuously went down and my stoma got smaller and smaller. Finally at about 3 months post-op it finally stayed the size it is now. When I cut hole in my wafer, I make it 1/8 larger than my stoma. My stoma expands and contracts a lot with peristalsis and this way it has room to do that. Cutting the wafer larger like that does leave skin showing around the stoma which can cause irritation if left exposed. I use an Eakin ring under my wafer to help cover that 1/8″ area. Eakin rings are putty like and soft, so they do not constrict your stoma. I wrote about them (including some photos) in this post: https://ostomyoutdoors.com/2012/10/30/ring-around-the-stoma-my-best-defense-against-leaks/

    I do eventually want to put a post up about making pouch covers. I have soooo many ideas for posts but life gets really busy sometimes that it is hard to find time to write them all:) I will send you an email with some basic directions. They are really easy and cheap to make.

    Yes! Please stay in contact and feel free to comment or email me at any time. I am happy to help. I know how stressful and scary surgery recovery can be, but I also know how amazing and full life can be afterwards.

    Best wishes as you heal up!

    Cheers,
    Heidi

  7. Thanks for the response and all the great info!! I have asked both my surgeon and Ostomy nurse about the white spots on my stoma….I also sent them pictures. They both said it is likely caused by some sort of trauma or pressure….probably from my wafer scraping on the way on or being too tight in general. They also said it could be from pressure and rubbing from my clothing. My stoma is VERY big and swollen right now….which my surgeon says is due to how bad my health was going into surgery and the malnourishment I’ve been dealing with since getting so sick. The ulcerations get dark/black because of the healing process….it’s a sort of protective layer/scab sort of thing. Still….it is very ugly and worries me if I think about it too much. And of course, there is also still the small chance that it could be some sort of IBD…and I try not to think about that. So, that is my ugly, spotted stoma story. I’m just waiting on this bad boy to shrink!! Hope all is good with you and that you are feeling well.

    1. Thanks for the update! I hope by now that the swelling of your stoma has gone down some. I had malnourishment around the time of my surgery too due to being so sick. It didn’t cause my stoma to swell but caused other healing issues. My protein levels were found to be low in blood tests so I had to eat a ton of protein while recovering from surgery in order to bump it up. I ate eggs, Greek yogurt and whey protein shakes like crazy but eventually everything went back to normal.

      My stoma has been doing great this week. No new ulcers. Hard to tell yet if the Pentasa is working or if it is just a coincidence because the ulcers are so off and on anyway. Still, this is the best it has looked in a while. Time will tell but I am optimistic. And anyway- I am not having any other symptoms so I guess if my stoma wants to have ulcers once in while anyway it is really no huge deal.

      Sending stoma shrinkage (but not too much!!!) thoughts your way:)

      -Heidi

  8. I’m so glad to here your anxiety is passing – that’s such a drag. You have enough on your plate and then you get really nervous about it. I went on the meds for about a month and then off and then on for about a month and then off for the last time. And, then you’re just tired of it. You tell your body to just knock it off. I think it’s when I stopped eating wheat that I really started to remain calm all the time.

    I hope it doesn’t come back. And, you can always call over here.

    xo

    1. Hi Jen,

      I know! I feel like I tell my body to knock it off every day. I sure wish it would listen. Oh well, at least my mind has paid attention to my request to quit worrying about everything so much. It has been nice to feel more calm lately. I think I just finally realized that it does absolutely no good to fret about the future. It only makes me miserable. Plus I really am confident that whatever happens I am strong enough to handle. Thanks for the offer to call anytime. I need to remember that. It helps to have friends to lean on:) And I am definitely ready for another Settlers, Murphy-dog, and wine (and GF Snyders pretzels) evening soon. Things have been crazy busy lately. I don’t know where March went. Hope you are doing well!

      -Heidi

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