Paging Gabes, Tex, Joe, Polly, and all

Gabes-Apg · Post by **Gabes-Apg** » Wed Dec 18, 2013 2:59 pm

Sunny, my motto is 'progress not perfection'.

In the thread about inflammation, I also said that we all need to have realistic expectations of remission normal, the time it takes.

If this is your normal, celebrate and welcome it. Don't compare yourself to others....

Lesley · Post by **Lesley** » Wed Dec 18, 2013 7:47 pm

Our shame based society, schooling, workplace, medical system, trained and conditioned us to 'overcome and get past barriers' move on, soldier through blah blah blah.... Take some meds and get on with life

Since I had polio and was supposedly cured at the age of 3 I have had to deal with this attitude. It's literally been like a mill stone around my neck. I remember thinking at the grand old age of about 12 "I wonder if one can die from tiredness?" Now I recognize the feeling I had then as the exhaustion I feel today and have felt most of my life. However, if I said I felt exhausted, I was told that everyone gets tired. It will pass. Don't complain. Same went for pain. Not allowed to "complain" because everyone hurts now and again.

I have not had N since this started, and probably well before I was diagnosed. There must be constant inflammation, no matter what I do, and what I do or don't eat. So, what you say here is what really scares me, big time.

Having ongoing inflammation is risky behaviour.... Aside from the gut and linked symptoms, it will also affect teeth, bones, liver, health of the nerve endings, etc etc... These are not maybe's.... They will happen, ongoing inflammation will accelerate their occurrence.

I already know it's happening. And I don't know what else I can do.

nsaidcolitis · Post by **nsaidcolitis** » Wed Dec 18, 2013 9:11 pm

I also have issues with constipation unfortunately my colonoscopy was normal and doctors always think because it was normal it's just IBS.

Luckily I found a way to see an expensive colorectal surgeon. I suspected rectal intussuception, rectolece or anything like that causing these symptoms but she didn't think so but she did find hemorrhoids probably from straining too much.

I have read somewhere that hemorrhoids can cause constipation if they are big enough.

Also since you had a defecography and it was OK (I would be the happiest guy if this test was normal for me) maybe your problem is rectal spasms the colorectal surgeon I saw thinks that's what I have and when she examined me she noticed the closing area you describe was very tight which may be because of stress or damage to the rectum or inflammation who knows.

I am unable to pass gass easily and I feel rectal fullness all the time. Trust me dude if your defecography did not find issues with the rectal area you should be doing a hat dance and you can also cure this colitis so easily. I tested it myself but I give in once in a while and get all the symptoms back, fortunately I get better in a week if I have a binge. Now whenever I have a binge I think of all the symptoms and pain and suffering and the binge goes away and I stick to my diet.

My problems are similar to yours so my plan of attack is stick to my diet no matter what. Get this thing under control and in full remission (I experienced this before no bloating no pain NO NOTHING ! Could eat fruits and broccoli and even milk ! ....however milk in large amounts is what took me out of remission) . Once i get to full remission the other stuff will be easier to deal with as you can tolerate more foods and even some meds for constipation.

@Gabes

If you don't mind, could you tell me your diet when constipation is bad?
Just want to compare and get further insight.

Gabes-Apg · Post by **Gabes-Apg** » Wed Dec 18, 2013 9:38 pm

My diet has pretty much the same for the past 4years....

It is medication that is causing the C,
I have had a few medication changes this past year.
due to unknown cause renal issues, and avoiding meds that cause/exacerbate d type mc, there are no other suitable meds that will help the myriad of symptoms I have got without causing more issue than benefit....

Gabes-Apg · Post by **Gabes-Apg** » Thu Dec 19, 2013 3:48 am

Lesley
as Connie (stanz) put it so well a few months ago
life is 10% of what happens to you, 90% how you react.

i dont mean this as a curse or harsh statement, maybe how you are now is 'your normal' (??as good as it may get)
hard to swallow, and accept and come to peace with, then again, worrying about it and being unsettled about it is not helpful either.

and keep in mind, we are all so very different, comparing yourself to others is not ideal. no two people in this group have identical genetics, childhood medical history, life events/challenges and adult medical history.... you are you

Lets look at the facts before we spend time worrying:

a) Do you have fluctuations in your Inflammation levels? have they been regularly checked?
keep in mind if your D, B, Folate and Iron levels are ok, then you are absorbing nutrients, it is very likely you are not in constant inflammation

b) it is possible to be having C without inflammation. BM size/diameter will be an indicator of this

when talking about ongoing inflammation, and subsequent possible issues - I am pointing that out to younger people as the reality of not managing their MC here and now.
We cant turn back the clock, or jump in the tardis and go back and fix the elements that got us to this point. But the knowledge we have can help others try and minimise the impact of them not managing their health.

hoosier1 · Post by **hoosier1** » Thu Dec 19, 2013 2:03 pm

Gabes-Apg wrote:Meant to ask, have you had your d, b12, b9 folate, and iron levels checked?

Gabes, I have not had these checked recently. I just had a blood draw for IBD Serology though. Not sure if I am getting any other results. I have started to supplement vitamin d as winters here are very grey and gloomy.

hoosier1 · Post by **hoosier1** » Thu Dec 19, 2013 2:07 pm

OttawaGrl wrote:Hi Rich,

Lately I have been very similar to what you have described. It comes for weeks on end.. constipated d.. And it feels like everything shuts down while I am trying to go to the bathroom. And I constantly feel that I have to go. I can never seem to empty my bowel! I do have an intussusception that I am still waiting for my GI to address... But I find when my intussusception is causing me problems, that is when I get the constipated d..
I hope your new Dr friend helps you out!

Tracy

Tracy, how was your intussusception diagnosed? They seem to dismiss such things in men. How do you manage your problem?

Lesley · Post by **Lesley** » Thu Dec 19, 2013 7:09 pm

maybe how you are now is 'your normal' (??as good as it may get)
hard to swallow, and accept and come to peace with,

I am more or less accepting that my back and my gut are probably as good as they are going to get. When I get a good day, or even a relatively pain free couple of hours I am trying to enjoy them.

Working hard on my levels and am due for another blood draw next month. My B's and D's were low last time. I upped intake and discussed the possibility of B shots with my doc. We will know on the next draw.

I have suffered with C most of my life, certainly since age 9 when I had an appendectomy. They left you in bed for a couple of days after surgery in those days. Caused adhesions, which cause spasticity and C.
The quality of the D shows me ongoing inflammation is there. A lot of pencil thin stools, mucous, puffy ones etc. Nothing even close to N.
Cramps and gurgling when the D is coming. It can take a few hours before that happens and the discomfort is pretty bad. I almost always have some pain, heaviness, horrible GERD and nausea, which is worse when I haven't eaten. I can't not eat even if I am not hungry because the discomfort is worse. Then I get more and more C and more discomfort. It's a cycle I have to deal with.
Exhaustion levels are very high most of the time. Energy way down.
I know there is inflammation. I also know that at the age of 69, when this has been going for many years, there has to be damage, some of which I see.

I also know that the level of pain caused by my back is causing the MC to remain in a state of flair. My back IS better. From constantly excruciating I actually have a few hours here and there where I can sit or lie down almost without pain. I am hoping this means the fracture is healing.
Sorry to be such a moaner. This is the only place where I can say how I feel. These last 3 months, since I broke my back and ruptured 2 disks, have been pretty difficult.

sunny · Post by **sunny** » Thu Dec 19, 2013 10:40 pm

Moan on my dear, moan on...moaning or telling your story? Sharing your heart...baring your soul...daring to be vulnerable...relating your pain....I feel closer to you as I sense I would be safe with you if I did the same moaning. Finally able to share feelings that have been unheard, unacceptable, and even ridiculed....you have been through hell, and still are....here is one place with others who truly understand. Our experiences may differ, but we understand rough journeys...we get it.
Sunny

OttawaGrl · Post by **OttawaGrl** » Fri Dec 20, 2013 12:23 pm

Laparoscopy surgery. They went looking for my appendix (which is another long story) and found apparently 3 intussusceptions at the small bowel.

As for managing it.. I never know what to do with it. I am in the dark.. still waiting for answers. Apparently anytime I get the C and pains I am suppose to go to the ER right away for a CT scan.

Lesley · Post by **Lesley** » Sat Dec 21, 2013 2:33 pm

Thanks Sunny. What a lovely post!