Where is everyone?

I check in, there just isn’t a lot of topics for me to reply to. Maybe some members can post some new threads that they’ve been thinking about but never posted.

Ditto!!! But I’m here!

Hi Old Mike, yeah I think you should or it will be lost in a thread titled "Where is everyone?" What you are writing about is over my head, but I know there are those here who will be interested!

I'm always here...😁
Switchingnfrom Effexor XR to Pristiq...first one today and anticipating possible side effects. 2 hours in and so far ok...🤣

q

CC: I have no colitis problems. Stoma works great, peristomal skin pristine,rectal stump
no diversion colitis,no blood no pain.
Oldmike

I still lurk, but as others, I'm in remission now...Rinvoq...so nothing to report or ask about. This remains the best and most informative message group around in my opinion. Enjoy every day all.

I've been lazy about posting. I get on and get back off without rhyme or reason.

My GI finally responded about my scope and said with "everything considered" he's happy with my results... I have an appointment in a month so I'll talk to him then.

I must admit that I feel very at home here with the people that post. You all give me support or take me to task when needed....

I appreciate you all!
Clo

Post Edited (clo2014) : 5/7/2023 6:29:55 PM (GMT-8)

Not sure where everyone is,for instance I started a thread last week,316 views one reply.
I play a lot on facebook ostomy page,since I don't have UC anymore. But if I find anything real
interesting on UC,I will put it here. Amazing to me how bad ileos's can be for some people.
Oldmike

@Wayne, the last time you posted your gi was going to test your antibodies to Humira, what was the results of the testing.

Have you considered trying some Imodium, that's my go to. Keep contacting your dr, if I remember right you are being treated through the VA. I know how slow they can work.

CcinPA,

After that nightmare scope with the evil nurse.... I developed a huge golf ball size knot on the inside of my elbow right below where she was doing the IV. My PCP stated it's a trauma site with lots of inflammation and an actual bruise blood clot. I'm on aspirin now... Which is wreaking havoc with my GI tract... plus it flat out hurts when I bend my arm. If it doesn't clear they will have to go in and cut it out....

We ran blood work after the scope and although it looked ok... My LDL panel was at 1000 and my testosteron level was at 97. My AST and ALT were at the point where they just needed one more point to be high and my CRP is at 11. There were a few other things that were slightly off... But my labs usually are.

So my PCP started researching and he added 4 tablespoons of ground flaxseed for the AST, ALT, inflammation, LDL and estrogen level to help with resetting my vagina/urinary tract biodome. We just did labs at 3 weeks after starting the supplement and my AST, ALT, BUN, are down. CRP is still at 11---but I am finding relief from my osteoarthritis in my elbows, shoulders and knees. My RVF fistula drainage has been cut in half. My "biodome" is showing up on the acidic side... And I've been able to actually skip days on cranberry pills, d-mannose and lower the times I use the cream. It used to be 1/2 gram every other day and now it's 3 times a week. We are waiting for the LDL panel. CBC and CMP came in pretty normal... Best it's been in a long time. So we will continue that.

I had a sonogram to check my ovaries because of the testosterone level.. But that's clear... We think. The sonogram lady usually tells us both if I should have a glass of wine, two glasses or once she told me I'd need a whole bottle with a catheter..(when the kidney stone obstructed me) This time she said no wine required.... I'm hoping she's right ..lol...So now since he thinks that may be clear....although we are waiting for the official reading to celebrate... he has me guzzling spearmint tea daily to see if that helps lower the testosteron level. I haven't had my hormones checked before so he is unsure if I have always ran high.... So unsure what's going on there. I'm just crossing my fingers and praying. I'll probably end up going to a gland specialist just in case. Amazingly enough my estrogen level was still sorta low even with taking the cream... So I'll continue that too. I go back in 4 weeks for more labs. Cross your fingers and say a prayer.

PCP is researching that shot thingy for losing weight. He would really like me to try it.. but we want to make sure it doesn't mess me up... (Especially after the aspirin.) But we are waiting until after this blood clot is resolved. I'm so mad at that nurse!! But maybe it was just my body rebelling so I should be more understanding.

I have an August appointment with a different specialist in Colorado. I told my current GI that we need to have a plan B in case things go south while I'm up here.... And he agreed. So he supposedly sent my info to the Colorado specialist. I'm still going to request a copy to take with me... Just in case. I swear his PA deliberately tries to mess with me.

Knee ablation is still being planned. That doctor wants to wait til blood work is better and I am no longer taking aspirin.

But I'm alive and kicking. Ive had another "adventure" on the farm. I'll have to write it up later. My spouse is ready to move me to the city... Lol....

Clo

Oh and Clo I just wanted to add: I take x3 tbsp of ground organic flax seeds daily too. As a prebiotic (fiber) and to lower my cholesterol. It has lowered LDL for me but slowly.
I mix it with some water 250 ml, let it sit for a few hours and then just eat it up. If you let it sit with water it will release this slimy fiber which I find soothing to eat up. Similar to slippery elm in a way.

Conquer UC,
I take my flaxseed in a smoothie, or I add water to it and a little (very little) oatmeal and eat it for breakfast, or I make almond milk shakes with flaxseed, ice, alittle vanilla and artificial sweetener. I found a recipe for pancakes I'm going to try. I just know that I feel better taking it vs. when I don't... And my blood work is indicating that it's doing something. I also have a colostomy and scar tissue through out my intestines so I get obstructions. The fiber powders made me very nauseous so I could not take them. I was on a very very low residue diet and taking milk of magnesia every other day...and still I was struggling. Now...no MOM and no pain.... I've been able to eat fruits and salads.... I wish I'd known about flaxseed before. I just hope it lowers my LDL... It's at almost 2000.I made a mistake in the previous post and didn't catch it....oops... How long did it take for your LDL to start going down? Were you very strict on what you were eating?

CcinPA,
My sister was just diagnosed with sky high estrogen levels and they started her on HRT. I told my PCP after she told me. (Plus I complain to him about night sweats, hair falling out.... things that could be hormones or Crohn's/medications... Up until now we thought it was all Crohn's or the meds.) He decided to check a bunch of things. L We did not expect testosterone to come back as high as it did...it was 97 and it should be about 45 to 67. (But if I lose weight it should go down some from that too.)

We were mainly checking my estrogen levels to make sure I wasn't using too much cream. We'd been having discussions--before I started the flaxseed--about needing a higher dose of estrogen because I felt like I was at the beginning of a UTI at least every 48 hours, I told him I was very uncomfortable the 10 hours before my next estrogen dose...and he kept telling me the dose was already above the recommended limit. It was a bone of contention. (My estrogen level still came back sorta low at 45? Even with the "above normal usage limits". The max was 54.7. ) He thought my estrogen levels would be much higher with the cream every other day. I shudder to think what it was before we started the cream. This is really important for post menopause women. The lower estrogen causes a lower almost alkaline pH in the vagina/bladder biodome which can lead to bacteria growth and recurrent UTIs. My biodome pH level was at 3.5 and 4 and now it's at 5.5 or 5.9? ) But too much estrogen can cause cancers.... So walking on a razors edge.

He had me go back in for another set of labs on Friday. He wanted to check a few more things....and he did not possible PCOS with a question mark by it. (I'm going to have to research that) Hopefully those results will come in this week. I just got the results on the scope and they didn't see anything...it states no acute abnormality in pelvis... Although they had some issues getting a clear view because of shadowing bowel gas...

Cross your fingers and say a prayer. Hopefully the mint tea has lowered the testosterone level and things are going in the right direction.

Clo