IBD and Cancer

By Togfather

1 min read

I am exhausted and scared.

I recently came home from a month in hospital because of frequent and painful rectal bleeding.

My ulcerative colitis flare revealed cancer

An endoscopy found severe inflammation (my ulcerative colitis) and a tumor, although impacted constipation prevented the procedure from being successful. They have now put me on IV Infliximab, which is reducing the inflammation. Now, there is a lot less bleeding but more fecal matter, which is good because I have not had a normal bowel movement since before Christmas.

They gave me Picolax in the hospital to try and remove the impaction. I think it may have helped, but I am still having many bowel incontinence events every day. Sometimes I will have four in an hour. Every one of them is extremely painful, despite taking Gabapentin, Tramadol, and Paracetamol.

How I'm managing now

I also have a large collection of plastic bags containing incontinence pads (I also have bladder incontinence due to having a catheter for a month in the hospital). The local council has registered me for clinical waste bags, and I am just waiting for them to supply and collect.

I have an appointment for another endoscopy on April 8th, where they will take deeper samples for biopsy. I should get those results at the end of April and hope they don’t find any more tumors.

After that, I will get an appointment with the surgeon to discuss next steps.

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Richard Faust Community Admin
Hi <inline-mention username="CommunityMember78a192" user-id="8877590"/>. Your exhaustion and fear are certainly understandable. That said, it is good that the mass has been found and you are getting checked. The earlier any issues are discovered the better. Do you mind if I ask if your fecal matter was previously tested for cancer? I ask this because most growths are not cancerous and, if your fecal matter previously did not test positive, then there is an increased chance it is not cancer or is very early. Please feel free, if you like, to keep us posted on how the test goes and to ask additional questions - know that this community is here for you. Best, Richard (Team Member)
Togfather Member
<inline-mention username="Richard Faust" user-id="7004419"/> That is an interesting question. No, The only time fecal matter was tested was years ago when I was disgnosed IBD. The malgnency was diagnosed after the endoscopy, when samples were sent for biopsy. Now the bowels are probably easier to clear, I am going back in on Saturdayu for another endoscopy on Monday, They expect to get it done properly this time,as the impaction is thought to have cleared. They will take more and deeper samples for testing this time. A CT scan did show an enlarged nyph node, but I am hoping they will not find anything new.
1. christine.laaksonen Community Admin
 <inline-mention username="Togfather" user-id="8877590"/> we are thinking of you! I hope that your endoscopy tomorrow goes well and can be done properly (now that the impaction is cleared). My fingers are crossed that they can get helpful samples but find nothing new also. All the fear and exhaustion you're experiencing are understandable. It's a lot to take in and process! Please know that we are here for you and appreciate you sharing your experience and updates with us. If you're comfortable, please let us know how it goes and what you find out. Sending you gentle hugs. -- Warmly, Christine (Team Member)
2. takeit2024 Member
 <inline-mention username="Togfather" user-id="8877590"/> consider a probiotic like VSL#3 and proteolytic enzymes to prevent inflammation and cancer
Togfather Member
<inline-mention username="christine.laaksonen" user-id="8454775"/> Thank you for your kind thoughts. The endoscopy went well today. Several samples from different areas were taken and sent for biopsy. I should get the results in about three weeks. I also got an appointment with the surgeon for 10th May, so I may not have to wait too long for treatment. I get my next infusion of Infliximab on Friday, which I am hoping will reduce the inflamation some more. Unfortunately, I think the pain is coming from the tumour rather than the proctitis, but I will wait to seee what the surgeon says. Best wishes. Tog 😀
1. christine.laaksonen Community Admin
 <inline-mention username="Togfather" user-id="8877590"/> Tog, thank you so much for coming back and updating us. I'm glad they were able to take some biopsies and am really hoping for some positive results in the coming weeks. How are you feeling after the procedure? I hope that you're able to get some rest! Sorry to hear about the pain though. That sounds particularly difficult, knowing it is the tumor inside you. Will the appointment with the surgeon determine whether or not you will have surgery to have the tumor removed? (Or has that already been decided?) Also, are you still experiencing the bowel incontinence and pain you mentioned in your original post? Or has that lessened with the medications now? You certainly are experiencing a lot right now, and I just want to continue to let you know that we are here anytime! Sending you gentle hugs. -- Warmly, Christine (Team Member)
Togfather Member
<inline-mention username="christine.laaksonen" user-id="8454775"/> Yes, the incontinence is still there, although at the moment it is just blood, which is to be expected after yesterday's procedure. The infliximab has reduced the inflamation, allowing the bowels to generate normal but loose matter, but it has done nothing for the pain. I am hoping that as time goes by, the infliximab will further reduce the Colitis inflamation. It does take time to work, and I I have only had two infusions so far. The massive dose of gabapentin (1200mg three tiimes a day) has certainly helped to cut down the length of time them pain lasts, but initial severity of the pain is still there, which makes me scream involuntarily with every bowel movement, even when it produces nothing. Sometimes, especially in the night, I sit in the bathroom or on the comode in my bedroom sobbing because I am so exhausted with it all. I have survived two heart attacks, but I have never felt this ill in my life. Surgery has not been decided, and the hospital doctor who referred me said he had spoken to the surgeon, who is apparantly reluctant to operate because I have sleep apnea and type 2 diabetes. I am also overweight. This means that I have to pursuade him to operate when I meet him, and that is not going to be easy. Best wishes. Tog 😀
1. christine.laaksonen Community Admin
 <inline-mention username="Togfather" user-id="8877590"/> oh my, you really are going through a lot right now! My heart goes out to you and I can hear how much pain you're experiencing and how ill you're feeling. I really wish that you were getting better relief. I, too, am hoping that as you continue to get medication and time goes by the inflammation improves and you get some relief. Has your doctor offered you any additional help for the extreme pain? Is that something you could reach out to the doctor about? As far as the surgery goes, I am crossing my fingers that your appointment with the surgeon goes well. It sounds like it might be a tough sell for surgery, but perhaps seeing the pain that you're in will help convince him. Will the surgery also help with the pain? Please know that we are here for you! Continually sending you gentle hugs. -- Warmly, Christine (Team Member)
christine.laaksonen Community Admin
Hello Tog, <inline-mention username="Togfather" user-id="8877590"/>, I just wanted to check in with you. It's been several months, and I wanted to let you know that I am thinking of you and hoping that things are going okay for you. If you're comfortable, I'd love to hear how you've been managing (but I also understand that these things can be exhausting and having enough energy might not be possible). Please know that this community is here for you. -- Warmly, Christine (Team Member)
1. Togfather Member
 <inline-mention username="christine.laaksonen" user-id="8454775"/> I am his daughter, I was checking his email. Shortly after he wrote this he was back in hospital, after infliximab he was vulnerable and a uti turned into sepsis and pneumonia. This was hard on his body and by early May they decided he would never be candidate for surgery to address the UC or the cancer due to the damage sepsis had done - meantime his organs were shutting down and they were struggling with his oxygen requirements. Knowing many time he had left would be a fight and filled with pain the decision was made to withdraw all treatment except high dose pain relief. He passed away a few days later on 11th May. I take comfort in knowing he is finally pain free, this year was so very hard for him. I am sure your support meant lot to him and I thank you all for giving him that. Amelia xx
2. christine.laaksonen Community Admin
 <inline-mention username="Togfather" user-id="8877590"/> Hi Amelia. I'm not sure if you'll still be checking Tog's email, but I wanted to make sure to tell you thank you so much for coming here to share about your father. I am so very sorry to hear that he passed this past May. My heart hurts for you and your family to endure this loss and all he went through before his passing. I'm glad there is comfort in knowing that he is finally pain free, especially after this hard year. Please know that we are thinking of him and you all. Sending you gentle hugs. -- Warmly, Christine (Team Member)