Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Last Piece of the Puzzle

Hi all, it's been a truly long time since I shared anything here. Thought I'd share this here, though, for people still here who knew me back when I was the member with the most posts!

Warning: this one is truly long. I am so sorry in advance.

Seems I also have Crohn's Disease along with AS. This is no surprise, really. I've known for over 20 years there was something not right. I had two Endoscopies in Toronto, one of which found the ulcers that NSAIDS caused, the other of which told me I had 'torturous' diverticulosis in my descending colon. Neither pointed to this. I'm not upset, in that so much of what I talked about could be attributed to my AS. But I'm irritated, because so much of what I talked about should have been addressed more fully by my healthcare team.

I had laparoscopic surgery at the end of February during which they cleared a 50 year growth of abdominal adhesions. A couple of weeks before that, I had another Endoscopy because of my symptoms. That found that I had ulcers in the ileo-cecal area, but he hadn't been able to get the scope any further, so two weeks ago I had a Capsule Endoscopy. That's when they finally found the Crohn's.

Since my surgery clearing the adhesions, my pain levels all over my body have decreased incredibly. Even the pain from my neck has decreased. This is probably due to the fact that the incredible abdominal tension I've lived with my whole adult life is gone. It never made sense to me that my rheumy said I had a mild case of AS, because my pain levels were never endingly at a 5 or 6 on the scale ... until I flared. Then they went higher. My GP in Toronto said I probably had secondary fibro. That made sense. Why did my rheumatologists not flag the pain levels? They are one of the effects of adhesions. My new rheumy has told me adhesions occur in patients with AS. She's the only rheumy ever to mention it, and that was because I told her I had them.

I eliminated wheat almost 20 years ago (about 95% now, but strictly at first) and that was the first huge decrease in pain levels. My thoracics burn when I eat it, by the way, so there is a direct link with AS in this. I also have to be careful with potatoes, but not as strictly. When I started on Remicade, which is also used for Crohn's, I could eat wheat and for almost five years, my gastric issues resolved.

Then I developed antibodies to Remicade and was put on Enbrel. It didn't work as well, but did the job. My sensitivity to wheat returned and so did my gastric issues. I had my second Endoscopy six months after starting on it. Because they found diverticulosis (another thing that leads to adhesions), I guess nobody thought to look further, or ask why I was experiencing diarrhea when stressed and had all my life.

My surgery in February was in direct response to an incident that occured in September 2016. I leaned forward on the couch to scritch the dog, coughed, and felt my innards do an agonising loop-de-loop that resolved (I thought) when I straightened out. Severe constipation began the very next morning. It never resolved

The doctor at ER said I'd pulled an ab muscle. This innard effect recurred when I coughed or laughed in a seated position for almost a year. Slowly, I learned to stand or straighten out if I felt a cough or sneeze coming on. I retired in September 2017, because I could no longer physicially bear the stress of work. I thought it was all AS.

Six months later, I began actively seeking help for the innard issues and around this time, the horrible cough/sneeze innard loop effect began again. Ultrasound showed nothing. Colorectal specialist told me that as a 54 year old woman, I had to accept my colon was just slowing down. Those were his words. I reminded him about the specific incident almost two years before and the immediate, unresolved constipation, and that I have AS. He reluctantly ordered a CT to look for a hernia, as that was the only thing I could think would cause immediate impact on my bowel.

The local hospital radiology expert decided to change that to another ultrasound in case the first one hadn't been done right. I questioned this, as he is not a colorectal expert. He looked me in the eye and flat out lied ... CT cannot find hernias, he said. Except they can and do. I'm not stupid.

I called my GP who referred me to a private laparoscopic specialist. He was utterly stunned at how I had been treated and immediately ordered a CT, paid for by the NHS. I don't know what he said, but it happened two weeks later. It found I had a loaded colon. They all took it as evidence that I was just a 54 year old woman. He told me to take a liquid stool softener for eight weeks. I'm thinking, this doesn't take into account the specific incident and two years of unresolved constipation. He saw the dubious look on my face and told me he would leave an open appointment on the books.

I used that appointment last September, three years after the specific incident. He ordered surgery to look for a hernia. And he referred me to a private GI specialist And that's what led to yesterday's diagnosis. Finally.

The specific incident was the adhesions pulling my peritoneal sac and my poor small intestines being pulled tight. The rest was Crohn's. Now, they are both dealt with (or in the process) and I feel better than I have in over 20 years. Still with the AS pain and gut discomfort, but much easier to cope. And I can identify what hurts, where, and usually why, instead of just being a giant ball of pain.

Oddly, my mother was taken in for emergency laparscopic surgery on Saturday to fix an obstructed small intestine. They found it had some weird loop wrapped around it that was choking both it and her appendix. She feels better than she has in years. Coincidence?

So if you've read all of this you deserve a medal. I'm actually fine about this. As my Gastro doc said yesterday, he had a feeling I alter how I do things to deal with it. I do adapt. I have for years. It's a fact of my life and it just is what it is. No point being upset. This is what I believe is the final piece of my puzzle in what has been going on with me all my life. That feels good.

Now, I can plot a course forward. Decide on a treatment plan and probably change my biologic. My rheumy and gastro are going to discuss it. My gastro was most disappointed he couldn't offer me Remicade. His whole face fell when I told him about the antibodies. He was so excited to offer what he knows is a gold standard medication for both diseases. Ah well. He'll survive. ;-)

Great to see You again, Inanna:

I was just talking about You with a friend! Well, actually he fancies himself a scholar on ancient cultures, so mentioned Your name and of course all I could think of is the posting goddess from KA!

I don't remember Your B27 status, but according to Ebringer's research, Crohn's disease is the same cause and mechanism as AS (something I knew long before I heard of Ebringer because of a friend who suffered with Crohn's; she was younger than me but had nearly identical physical distress before I got identical issues!). He found that the incidence of B27 is lower in people who have Crohn's.

Studying the nature of the bacterium, it is inescapable the terrible role it could play in causing bowel obstruction!

After my long experiences with the combination of NSD plus antibiotics, I came to the conclusion that I had severe SIBO caused by our nemesis germ and that greatly exacerbated my own advanced condition.

Glad You have found some useful answers and I hope that You continue to improve; it was a long, arduous journey for me but there was no other way but UP!

HEALTH,

John

Hi John,

Inanna is, of course, ancient Sumerian. :-)

I am B27+, so I guess I a rarity. Luckily, my obstruction was mechanical and cleared as soon as the adhesions were removed.

I haven't taken an NSAID in several years, due to the ulcers they caused me and due to chronic kidney disease, also caused by them. I use CBD oil, now, for the most part.

Interesting you thought SIBO. That's the page I was on until Momday, when I found out about the Crohns. It explains so much.

Thank you for your reply, John. I appreciate it.

Warm hugs,

Hello Kat,

Good to see you posting... I read all the way through your post and now awaiting my medal (preference for silver as John appears to have read it all first )

Good to hear that you got some answers and doing better, hope it continues.

I am doing pretty well, eat some occasional rice now, couple of times a week. Mateo is now 12 1/2 years old and getting tall.

Best wishes to you... you stick around you can lead in posts again

Tim

Tim!

Mateo is 12 1/2 already???!!! Holy cats. When did that happen?

I'm glad to see you and know that you are surviving lockdown. How have you been doing with all of this?

Warm hugs,
Kat

Hello Kat,

I live in Rosario... until this last week we had been doing exceptionally well with virus. We have 2 million people and only 150 total cases since it began here and we had gone a couple of weeks within a new case.

However... last 1-2 weeks have had probably 30-40 cases and growing a bit. We may go back to more strict phase if this continues.

Only 2 deaths in city thus far..

Buenos Aires is a different story, many more cases and deaths.. got into a "villa" (slum area) and took a foothold a bit.

More worried about my mother/brother.. brother is a teacher, he is not too excited if schools open again.. especially if normal flu season comes on top of that.

How is the virus up in the Toronto area?

It is so good to see you here again.

Best,

Tim

Hey Tim,

I'd forgotten you are in Argentina. I wish Toronto were doing as well as Rosario. Toronto has a population of 2.7 million(ish) with over 14,000 cases that they know of. The province of Ontario is opening up in phases, but they are keeping Toronto on more strict lockdown. My family is a couple of hours north of the city but they are well. They're a bit more isolated ... until this weekend when cottagers start arriving. We'll see what happens.

I'm actually in the UK, now, living in the Midlands near Leicester. Leicester has not been doing well. The country had begun opening up, but Leicester has the highest recorded cases in the country and has been locked down again. The city finds out today if things can start opening. Problem is overcrowding and there's a huge scandal about the whole thing. We live about half an hour west of the city and our borough has 530-odd cases. Numbers are going down, but not fast enough. My sweetheart is in strict isolation as ordered by the NHS, and must remain so until at least August. Even then, we're going to stay isolated. I go into town for groceries and to the chemist, and have been wearing a facemask when I go into town for over two months, now. England has finally (FINALLY) said they are mandated inside grocery stores and shops ... as of next week. What's the hold up, boys? Idiots really dropped the ball on this.

I don't blame your brother for not wanting to go back. None of them want to go back. Public schools, universities, colleges, teachers don't want to be there, especially not without proper PPE, which teachers here have been told they aren not allowed to use. At all.

I'll keep popping by. :-)

Warm hugs,

Who are you calling idiots? Boris will have you sent home ...

Good luck in your fight against these infirmities

This is great news!

How did you manage to get your rheumy and gasto to talk with each other? One would think communication concerning a patient’s health would be top priority, but it seems most of the time this just doesn’t happen, maybe if it did it wouldn’t take years to determining issues.

When I had my colectomy in 2016, my surgeon had to go through a scar from a previous abdominal surgery and he also said my entire abdomen was full of adhesions. I had to be opened from my sternum to my pubic bone, on the opposite side of where the surgery was needed. Which makes me wonder as well if the sigmoid also had internal adhesions.

Why does it seem to take years and years before that ah ha moment arrives.

So excited it’s happened for you. 🎈💕🎈