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ravenwoodglass

Mass Wasn't Cancer I Should Be Happy Why Am I In Tears

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I have had a mass in my LLQ for over a year and of course because I don't trust doctors anymore and it doesn't hurt I have tried to ignore it. I finally went in for tests and was told that I have a small fibroid, a couple ovarian cysts and that the mass I have been feeling is my intestines. For some reason they have moved out of where they should be. I stopped and let my husband know and called my grown children and felt like dancing for joy until..... I went to the store and ran into a fellow celiac who wanted to know if I was going on the walk this year. Yeah right, I am so much more isolated now, I don't have the magic pills that I know will prevent an accident and the neuro damage has left me with little bowel or bladder control. PT helped a lot but I still need to be right there (although at least I can make it to the B-room now if it's not more than a room or two away).. I try so hard to be positive but I want to be able to just go out for a soda or Woodchuck, or go to a movie, or most of all to go and see my daughter, I can only see her at Xmas. This disease has stolen my life and I don't know how to get it back. I know I am feeling sorry for myself and I shouldn't so many people have it so much worse than I do. But I get so jealous sometimes of people being able to just do simple things. Well I guess there really isn't anything much anyone can do, and I know I am not alone but sometimes it just hurts so damn much and I get tired of pretending the world is rosy. I think I will go to my garden now and try to be thankful that at least I can walk, and bend and smell the flowers.

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Hi Ravenwood--I'm sorry you're feeling down today. I had a day like that recently, and some very nice people here let me vent and get it out--and were so understanding. No one can see things from a positive angle all of the time--please don't expect that of yourself. You are human, and you have every right to grieve those things in your life that you miss. I think spending some time in your garden is a wonderful idea. I hope you feel better tomorrow :) PS--So glad to hear about your tests turning out fine!

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I am glad that the tests came out fine. And I also understand the depression you are feeling right now. We have all been there and will probably go there again in the future. Don't feel guilty about it. What I used to do when I got depressed is that I set a time limit of 2 or 3 hours. I would wallow in the self pity and when the time was up, I got on with my life. It worked for me. There is a word for that and I can't think of it, but it is like a cleansing of your emotions. I hope the garden helps. HUGS!!!

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Wow, you've really been on an emotional roller coaster! Give yourself a little room to breathe here.

Here's a question: What would you tell your best friend if she were in the same situation? Can you be as nice to yourself as you would be to your best friend?

What are your options, bowel-and-bladder-wise? Are Depends a temporary option? I say temporary because I can't help wondering if regular exercise might give you back some muscle control, but maybe it might be a long-term option?

I can't really say until I'm in your shoes (and you never know, I may end up in your shoes someday), but it seems to me I'd rather wear Depends and get out there in the fresh air and sunshine than sit next to the toilet all day... Just think of it as a very large Sanitary Napkin!

Of course, I'm saying that because it's beautiful and sunny today (which we hardly ever see inPittsburgh, usually it's gross)! :rolleyes:

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I'm glad it wasn't cancer, but sorry that life in general is sucking so much right now. *hugs*

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Thanks for your replies, it is nice to know that I am not really totally alone. Fiddle Faddle I have thought about using depends, and while I know it would give me more freedom I feel like if I do that I am giving up all hope of ever having a normal life. But maybe if I can get myself to think of it as a temporay solution rather than a permanent giving up....... Let me think now, perhaps I could go to a movie or out for an evening. But it would be humiliating if anyone could tell I was wearing them, but maybe if I dress loosely noone would know? I know I have problems with PTSD, too many public accidents and humiliation, I had one today after the tests. At least I am fortunate and can survive without working and I have a great group of people here that at least know how I feel. I hate doctors, I hate celiac, I hate the damage that I have from being misdiagnosed for over 15 years, really 45 if you count the neuro symptoms and not just the GI. But I am so thankful for you guys, my family and my little dog who is so understanding about never getting a real walk.

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Don't ever let this disease steal your life. Don't let it. The power is within you, and grab that chance to be free of it. I know that it follows with other issues, but try to grab the strenth and be taller than the issues.

I know that is easier said than done. No one can know what you life is until they walk in your shoes, but there is something that I have learned from this Board... Celiacs are NOT QUITERS, and very opinionated., I may add.

We are stong people and I know that you are one of us.

Keep on keeping on. Lisa

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I'm so sorry it's been so horrible for you! :(

Could you start by walks around the block, sort of doing laps, so you could duck into your house and change if you need to?

We have a local park with Royal Flushes (portapotties) located about every mile. Does your area have anything similar? --if you were to tuck an extra Depends and a baggie of baby-wipes in a tiny purse or large pocket, would that be enough? As for the smell, if you could get to a bathroom soon enough to change, people might think that you're just farting like everyone else in the world. ;)

Here's a funny story: a long time ago (3 babies ago!), I was jogging in that park with a friend, who had a panty-liner that had somehow caught on her pubic hair. She was so uncomfortable, she said there was no way she was going to make it to the next outhouse, asked me if anyone was looking, and then ripped it out WHILE SHE WAS STILL RUNNING and chucked it into the bushes. I had to stop running for a good 5 minutes, I was laughing so hard. :o

Don't give up on the idea--it's YOUR life, not celiac's--live it!

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Guest BERNESES
Here's a funny story: a long time ago (3 babies ago!), I was jogging in that park with a friend, who had a panty-liner that had somehow caught on her pubic hair. She was so uncomfortable, she said there was no way she was going to make it to the next outhouse, asked me if anyone was looking, and then ripped it out WHILE SHE WAS STILL RUNNING and chucked it into the bushes. I had to stop running for a good 5 minutes, I was laughing so hard. :o

Don't give up on the idea--it's YOUR life, not celiac's--live it!

Now that is a great story!!!! Ravenwoodglass- i'm so glad it's not cancer but i know what you mean about sometimes feeling like this disease has stolen your life. And I understand about the Depends thing too. But here's a secret from someone who has had multiple accidents- i don't give a poop anymore! Sh*t happens and it happens to more people than you would expect!

I have always loved how Lisa says not to let this disease get in the way of living. You have every right to be upset, but just try. One step at a time. You are stronger than you think. hugs, B

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I'm so glad your tests went well and I hope you feel much better tomorrow. I think we all need a day from time to time to just be bummed, but like armetta said, we have to decide to keep going. My son has problems with control if he ever gets glutened, so I keep pullups for him. I know it's more acceptable for a kid, but it happens with adults too. If the Depends solution gives you the freedom you need, then more power to you for taking the step towards more freedom. I worked in a retirement home for a long time and it really was no big deal there. We also had a 13 year old foster son who had control issues. The Depends were a god-send for him. It's a long story, but it finally gave him the control he needed to deal with his problem. It's hard to let go of our inhibitions sometimes, though. I hope you find a solution that you are comfortable with soon. I'll be thinking of you.

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Great news that your growth is benign. I agree with prior poster that your emotions have been frazzled by the fear of cancer and having a cancer scare - and fibroids - can bring on all good and bad emotions/feelings. (I've been through a few cancer scares in the past few years myself).

I agree with you about doctors. ....

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Guest BERNESES
Thanks for your replies, it is nice to know that I am not really totally alone. Fiddle Faddle I have thought about using depends, and while I know it would give me more freedom I feel like if I do that I am giving up all hope of ever having a normal life. But maybe if I can get myself to think of it as a temporay solution rather than a permanent giving up....... Let me think now, perhaps I could go to a movie or out for an evening. But it would be humiliating if anyone could tell I was wearing them, but maybe if I dress loosely noone would know? I know I have problems with PTSD, too many public accidents and humiliation, I had one today after the tests. At least I am fortunate and can survive without working and I have a great group of people here that at least know how I feel. I hate doctors, I hate celiac, I hate the damage that I have from being misdiagnosed for over 15 years, really 45 if you count the neuro symptoms and not just the GI. But I am so thankful for you guys, my family and my little dog who is so understanding about never getting a real walk.

You need ((((((((((HUGS)))))))))))))))), Beverly

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I wonder if a combination of lighter depends (for bladder incontinence) and a low-residue diet (if your intolerances allow it, for the bowel incontinence) would help. I can't imagine how frustrating it would be to feel trapped near a restroom, but I'm certain that depends would be 'invisible' in comparison to that.

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I wonder if a combination of lighter depends (for bladder incontinence) and a low-residue diet (if your intolerances allow it, for the bowel incontinence) would help. I can't imagine how frustrating it would be to feel trapped near a restroom, but I'm certain that depends would be 'invisible' in comparison to that.

Tiffany, What is a low residue diet? I have extensive large diverticuli throughout my intestines, does low reside mean 'constipating'?

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Thanks everyone, things are a bit better today emotionwise. As much as I hate to do it I think I will go out today and get a package of the lighter depends, then maybe I'll try a walk by the lake. Sometimes I think the fear of an accident is worse than the accident itself. I always carry a jacket or cape to hide in and a change of clothing if I am going any distance or am going to be away from home. I beat this fear when first diagnosed enough to be able to go to the store and try to park farther from the door each time but haven't been able to move forward past that. It took a long time for me to get this bad and I guess I shouldn't beat myself up over the fact that it will take a long time to get past the fear. And especially thanks for the hugs you guys, I realized yesterday that noone has touched me for over 6 years except for a perfunctory goodbye hug when the kids leave to go back to college. I think it's time to get off the pot, get going with some solutions to this problem and then maybe head to a nursing home for a bit of volunteering. I don't think they'll mind if an accident happens and maybe if I can make someone else feel less lonely it will help me too.

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Tiffany, What is a low residue diet? I have extensive large diverticuli throughout my intestines, does low reside mean 'constipating'?

No, low-residue means that you're only eating foods that are almost entirely absorbed - you may already be on a similar diet. It's fairly low in fiber, because the whole point is that there is very little stool produced at all. You can google it to find out more (I've done it for short times in the past when my hemmhorids were giving me serious trouble), but there are a few medical conditions for which doctors will 'prescribe' such a diet. It is a limited diet, and it can be very difficult to follow and to keep up on your vitamins and minerals, and I'm not completely sure whether or not it would be contraindicated with diverticuli. But the basic premise is eating foods that are entirely digested and absorbed by your body easily by the digestive system so that there is little to no stool formation.

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There are so many ups and downs with this crazy celiac disease. It is so hard to stay positive sometimes. I can't imagine your pain, but I feel for you and I wish you the best. I'm sure you'll find the way to beat this and not let it beat you.

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