I’m dealing with cancer again

[Lisa]

Hello friends,
I haven’t been here for a while. I’m almost at my 4 year post treatment mark after rectal cancer. Thought I was doing great, and then seemingly out of no where I have been diagnosed with a new stomach primary. I’m still in complete shock. Devastated. How did I get 2 major cancers by age 50? If I get through this, what’s next?
I adapted so well to the colostomy. My worst fear has been something happening to interfere with my ability to irrigate. Now I’m in a fight for my life so I guess that issue is secondary but it’s still upsetting to me.
Any advice on irrigation while on chemo? I’ll be having surgery to remove my stomach. Anyone know anything about how that might effect my ostomy? I know the way I eat will have to change and there is the possibility of dumping syndrome, I’m thinking my irrigation days might be over. I’ve been too cowardly to do any internet research, so thought I’d ask here to start. Thanks.
Lisa

[ot dave]

Hey Lisa,

So sorry to hear about the cancer in your stomach. Cancer is always scary. A lot of things will play into your ability to irrigate going forward. Chemo had different effects on me. Sometimes it cleaned me out, sometimes it backed me up. Irrigating while on chemo may be too exhausting during the treatment, and frankly, not worth the energy/effort. That may be a wait and see thing for you. Depending on how much stomach they need to remove will have an effect on irrigation as well. You won't be able to eat as much at first, and you'll have to eat more frequently to maintain nutrition. As you know, eating engages peristalsis, so that may have an impact on irrigation success as well. Unfortunately, I don't think there is going to be concrete answers for your unique situation until you are in the thick of it. As we know, ostomies are all individual, and behave uniquely for each person. You may be just fine with irrigating, and you may need to give it a break until you get to your new normal. It'll be a marathon either way. But, I do know that having a positive attitude is immensely helpful in the recovery process. You adapted to your ostomy, you'll be able to adapt to this as well.
I don't blame you for not doing internet searches. In fact, when I encounter others who are battling cancer, I encourage them to not do "research" too. When I was diagnosed, I got online and read that the 5 year survival rate for my situation was less than 30%....I didn't start searching for ostomy/cancer related information for over a year after that. It wasn't until my surgeon mentioned irrigation as a tool for me that I started searching again, and that's how I found this discussion board!
Hope that helps some. Keep your chin up, I'll be praying for you.

David

[Lisa]

David
Thanks for your kind and thoughtful response. I have a long road ahead and it’s going to be a lot of wait and see. I agree with you about positive attitudes, so that’s what I’ll strive for. I appreciate your prayers. Thank you.

[Murph00]

Hi Lisa,

So so Sorry to hear you and your family have to go through this again. I think Dave covered a lot of valid points. Your situation will be very dependent on how far your cancer has progressed and how much of the stomach has to be removed. It sounds like they/you may have caught it early. I certainly hope so. People have the size of their stomach reduced all the time and once healed, for the most part they go about their lives as they always did. Something else to consider is that what is left of your colon or GI track now, should remain in tact. Which, from an irrigation perspective, should be business as usual.

I can fully relate to your situation and the fears that come with it. I also had two primary cancers by the time I was 50. That was then, I'll be 58 in February and looking ahead. In fact, I recently renewed my passport for a 10 year term. You beat it once you can do it again!

Like you and Dave I find the internet biased towards the negative side when it comes to cancer. There are a lot of us out here that have been living with cancer for many years. Unfortunately I don't think there's enough statistics or articles to support the survival rates as there should be. For us cancer never goes away. We have to learn to live with the fear every time we get an unusual ache, pain or when something just doesn't feel right. But we do it and we keep moving forward. And move forward you WILL!

You have the right attitude to make it through this.
Stay strong for yourself and your family. Please keep us posted.
I'll be thinking of you.
Murph

[steiconi]

Lisa, I've got no useful advice but wish you a full and speedy recovery.
Just keep plugging away and hope for the best.

[Lisa]

Hi Murph
You have sure been through a lot. Your story gives me hope. They are calling my cancer locally advanced but curable they say. Surgeon told me (even though I didn’t ask) recurrence rate of 50%. Don’t really like that number. I will have to lose my entire stomach and spleen.
Good for you with the passport! Hope you are planning a great trip!
I pray for continued health for all here.
Lisa

Thank you Steiconi,
I know you’ve been going through so much yourself. I’m wishing the same for you.
Lisa

[Lisa]

I think you are right David. Irrigating on chemo is hard. I’m too exhausted. Do I just stop and my body will take over again?

[ot dave]

Yeah. You might have to readjust to pre-irrigation routines like being careful how you lay when sleeping, clothing choices, changing your appliance more frequently, etc. Your system will work on it's own without the irrigation. Do what you can on the days you can, and when you can't, rest... This is like eating an elephant...one bite at a time.

David

[Lisa]

That’s a great analogy one bite at a time...
Not looking forward to pre irrigation routines but I guess it’s time to find that good attitude.

[Murph00]

Hey Lisa,
I must admit I read your second post a couple of days ago and found myself at a complete loss for words. I naively didn't consider you losing the entire stomach and spleen.Your situation really hit home! I just couldn't reply at the time.

I also must admit that I knew nothing of what you're about to go through and reluctantly had to do a Google search. I'm sure you've gained a lot more knowledge into what you're facing but one positive take away I can offer from what I've read, is that your condition is manageable. It certainly won't be easy but it is something you can get through. The ostomy just adds another dimension.
I agree that taking a break from irrigation through the healing process and chemo stages would be a necessary step in your recovery. Hopefully it won't be too long before you find yourself feeling better, in a new, "new normal", state and will be able to try irrigation again.


You already have the attitude, you've never lost it! You can do this!
Murph

[rebeccaannmarie]

Hello Lisa

I have read your posts for a while as I learned how to irrigate, and I have been very encouraged by your openness and advice.

I just want to say I am thinking of you and praying for you.

Let us know how you are doing.

Becky

[Lisa]

Thank you all for your support. It means more to me than I can say.

[Diane C]

Hi Lisa,

I'd been away from the board for a while until recently when I faced the decision of ending irrigation and switching from a colostomy to an ileostomy. I wish I had advice for you but just read about your experience and wanted to extend my very best wishes. On 11/1, I also had my rectum and anus out. Am dealing with wound healing and coping. Not a walk in the park but not the worst thing either. Am getting better slowly but surely -- step by step daily.

Bottom line (no pun), I'm rooting for you!

Diane C

2000 MACE Procedure for Constipation Due to Anal Muscle and Puberactalis Dysfunction
2002 Colostomy
2015 Peristomal hernia and sigmoid abscess repair with mesh inserted
2018 Ileostomy

[Lisa]

Thanks Diane. You have been through a lot. I hope you continue to get better every day. It does take longer than we would like to heal and adjust to new normals. I am rooting for you to!
I had my last pre-surgery chemo a week ago. Some bumps along the way. I had an allergic reaction to the Oxaliplatin and ended up in the hospital for a week. That was one of three drugs I was receiving and had to be eliminated after the first treatment. I’m a little worried that I wasn’t able to get all of the treatment that was planned but my oncologist doesn’t seem overly concerned. I ended up continuing to irrigate throughout the rest of chemo. I just skipped the really bad days and that seemed to work for me so I was glad.
I have a pet ct tomorrow and will meet with the oncologist and surgeon next week to plan the next steps. I’ll let you know how things go. Thanks for listening.

[Lisa]

So, I had my follow up appointments. Seems there was no change in my pet ct since the initial slight improvement on the first one half way through chemo. Oncologist put a positive spin on the results. Surgeon said I had a poor response to chemo. I tend to agree with him. My surgery is planned for New Year’s Eve. Seems everyone wants to wait until after the holidays for surgery and his schedule is quite booked. I don’t care for me but I’m sorry for messing up the holiday for my family.
Surgery is going to be bigger than I thought. He’ll be taking my whole stomach, spleen, part of diaphragm and possibly tail of pancreas. It will be open. He did say he felt he could get clean margins. I’d be lying if I said I wasn’t scared. So many unknowns.
I realize this isn’t irrigation related, but I feel safe here and just need to share with someone other than my family. So thank you all. If you pray, please say one for me. I need courage and strength right now and the days to come.
Happy holidays to you all.
Lisa