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Ulcerative Colitis
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Posted 4/27/2023 6:10 AM (GMT 0)
It bores me anyway…

My prostate removal was ridiculous. (It was cancerous). There were so many complications, to this day…if anyone asked me what to expect from a prostatectomy, I would not be able to tell them. My experience has nothing to do with that kind of surgery for 99.9% of the the men who have one. (And yes…I’ve done the math. The odds of any one of these complications are low…some…extremely low. The odds of so many extremely low events happening to one patient as a result of that surgery are in the .01 percentile range). The only complication I did not have and I’m grateful for it…is a big one. Death.

The same holds true for ulcerative colitis. The only things I know about this disease would be relating to people what I’ve read here about what it’s like to have UC. I was diagnosed with it two years ago. Since that time, I’ve been on Humira. There was no diarrhea. No pain. No blood. Just 5 or 6 normal bm’s every morning. That drove the colonoscopy. That stopped even before I started Humira. (It took about 3 mos. to get approval). One year ago, I had another colonoscopy at the Miami University Hospital IBD Clinic. They found no evidence of my ever having had UC. So much so, that the doctor wanted to see the diagnosing paperwork himself.

Now...I THINK…I’m having a flare. Last Oct I began having abdominal pain and constipation. (Still no blood). In December I went to the ER twice for stomach pain. The CT showed “mild wall thickening from the splenic fixture to the sigmoid colon.” “Impression: colitis”.

In March, I got into see my new GI. (The old one retired). He ran tests. No infections. But there was zero Humira in my blood. The antibodies were so high it had quit working. I don’t think he even ran a CBC. He said he’d call me in a month with a plan for a new medicine. That’s the last I’ve heard from him. He does not know if I’m still alive. And frankly, I don’t care. I do not trust this doctor. (I’m in East Tennessee now. People don’t come to Southern Appalachia for it’s world class medical care).

During one of the visits to the ER in December…they gave me a shot of steroids. The pain I’d been experiencing for 3 months disappeared almost immediately. Do you know how good it feels to not hurt after hurting for 3 months? I’d bet most if not all of you might. Trouble is…it was back the next day.

So now…I been having chronic pain and chronic constipation. I am so fatigued it interferes with my quality of life. I’m nauseated a lot. I don’t sleep well. This has to be what a flare looks like for me. (I’ve never bled)

Monday I go see my new PCP. (I don’t trust him either but my old one retired). I need a referral to a new GI. That’ll probably take a couple of months right there.

(Is my disgust showing? To who can I tell how bad I feel? Nobody. Nobody I know wants to hear that crap).

That’s all for now. It’s 2 am. Nausea. Can’t sleep. (The pain isn’t as bad, that’s a good thing). But I still have to think about when I’ll poop again. And wonder how I’ll make that happen.

I think that’s a flare.
Posted 4/27/2023 6:46 AM (GMT 0)
There is an upside to all of this.

I can party. Trouble with that is…


…it’s a pity party.
Posted 4/27/2023 9:40 AM (GMT 0)
Island....LOL You sound so much like I've felt in the past. THIS is the best group of helpful and listening folks I've found. As you said, nobody wants to hear us moaning about our illness. I have a super great gastroenterologist. I've been seeing him since this mess began around 1996. Now, he is trying to slow his practice down and I worry a LOT about losing him. He is the ONLY gastro. doc in this area and I know it will be impossible to find another doctor who cares for his patients like him. You might want to investigate Chapel Hill in NC. It's not TOO far from eastern Tenn. and many people say their doctors are great. Don't give up and KNOW, there is some drug out there that will help you to live a fairly normal life. Just have to keep up the quest. Good luck, I hope you feel better soon
Posted 4/27/2023 2:11 PM (GMT 0)
Hey geezer, we already have something in common! We’re both on the same drug!

Hyoscyamine sulfate odt 0.125 4-6 hours as needed. My GI sent me out of his office with that. That stuff is THE BOMB! I’m thinking, “This guy’s a nut. A pill for how I’ve been feeling? Get real”. So, after studying it on the internet for a few hours (I don’t like pills) I decided “What have I got to lose?” And so I took one. And true to form, in 30 minutes the pain had dulled! For some reason, the pain doesn’t begin until late afternoon. I’ve only taken one. But if I start hurting again tonight, I’m taking another one.

That may be what I need to do. Head over to Vanderbilt or Chapel Hill. Vanderbilt’s not what it once was and I like N.C. Maybe I’ll give ‘em a call. Make a “UC road trip.” I could use the change of scenery anyway. I’ll keep ya posted.

Be cool. Thanks..
Posted 4/27/2023 2:37 PM (GMT 0)
Island Time, your posts rings true with a lot of people, this is a good place to vent. There is nothing worse than having drs that don't listen or not having some confidence in drs that are treating you. I went through 4 gi's in 2 years until I found a gi that was great on all levels. Make it your goal to find a new gi.

Good luck.
Posted 4/27/2023 4:59 PM (GMT 0)
As far as constipation have you tried miralax? It’s not a stimulant as much as others so doesn’t cause as much cramping. Also some psyllium is super helpful. I use Metamucil powder at night (a big heaping tablespoon , but start small) because I don’t mind the taste (much!🤣) but there’s pills also.

I agree you need to make it a priority to find a good GI.
Posted 4/27/2023 5:23 PM (GMT 0)
Can you call the GI you don't like and ask what the plan is since he said he would tell you in a month (that is very odd -- he should have had a recommendation as soon as you stopped Humira). It might take a while to get an appt with a new GI.

Are you seeing an oncologist for the prostate cancer? If so, you might want to let him know what is going on too.
Posted 4/27/2023 11:24 PM (GMT 0)
@straydog: I was just sick of feeling sick last night and had to complain to someone. I’m looking at getting another GI. Thanks for the validation that it’s OK to do so. It can make me feel as if I’m the one who’s being difficult. Like it’s my fault.

@FlowersGal: Miralax is my new drug of choice lol. 😊. But, my bowels are so sensitive they demand I do what they say to do and when to do it. I can stay regular by using Miralax at bedtime. This produces the result they’re looking for. But, any (and I mean any) deviation from that routine produces constipation.
I don’t mind the taste either. It’s curiously soothing to my stomach and such!

@CCinPA: Believe or not…His office called this morning. Can you believe that? He is putting me on Stelara. His office is calling the infusion center to schedule my first infusion. Three infusions over the next 6 weeks and then 1 infusion every 2 months. I’m still going to my PCP Monday to get a referral. My hope is to get in to see another GI before the first infusion for a second opinion. As to the cancer…prostate cancer has extremely good markers. These markers (PSA) can tell if their are cancer cells in my body before it’s even called a relapse. I do have some markers but have had for years. The particular grade I have could very well be “indolent”. (Or so says John’s Hopkins). But it’s definitely something to keep an eye on for the rest of my life. If these cancer cells (there was a positive margin during my surgery)…if they begin to make any move at all..I will know about it. As it stands now, I am officially “cancer free” even though there has been and are some cancer cells left inside me. I’ll worry about that if or when anything changes. Being on these biologics…it seems even more imperative that I keep an eye on it. There’s still bullets in the gun if it ever begins to increase.
Posted 4/27/2023 11:39 PM (GMT 0)
Island Time, can you refresh my memory on what tests you had that led to the diagnosis of UC? And what were the results of those tests? Do you have copies where you can share exactly what was found?
Posted 4/28/2023 1:14 AM (GMT 0)

beave said...
Island Time, can you refresh my memory on what tests you had that led to the diagnosis of UC? And what were the results of those tests? Do you have copies where you can share exactly what was found?

beave…I have copies of all of my medical records for the last 10 years. The sheets of my final pathology report from my diagnostic colonoscopy are stapled together. However…the only sheet I need is missing (the last sheet. I can see where it’s been torn off. I tore it off…as I knew it was the most important, but I can’t remember doing that nor can I find it). On page 1 of the Final Surgical Pathology Report it begins with tissue samples that were submitted and ascribes each sample with a diagnosis. There were approximately 8 or 9 samples taken. Page one contains samples of the Antrum, Second and 3rd part of the duodenum, and the terminal ileum. They’re all unremarkable. Page two has the rest of the biopsies…the one that is missing. I do remember reading them.

After the colonoscopy, the doc showed me pictures of what he said was ulcerative colitis. I got a preliminary report from him about the procedure. The last 4 -6 samples were of my descending colon and sigmoid colon. They were labeled as “indeterminate”. When I received the final surgical pathology…they all said “ulcerative colitis”. I remember one specimen remained “indeterminate.”

You’re not the first person to ask me for this. I’m going by the doctor’s office where he did the colonoscopy Monday to get the rest of this report.

TBH…I’ve never been 100% convinced it’s UC. The rest of my organs have been checked this year. My internist said the pain was intitial cystitis. Since I couldn’t tell how he could know that by looking at me, I had my bladder looked inside of by my urologist. My urologist proved the internist wrong. Nothing wrong with my bladder or my kidneys. It shouldn’t be my pancreas. I have 2 cysts in it. I’m enrolled in the JH Pancreatic cyst clinic for on going evaluation of them. I was there 3 weeks ago. The MRCP they did showed no suspicious features of the cysts. Although I’ve wondered about on going low grade pancreatitis, she said there was no indication of that. I haven’t drank since 1986 and my liver enzymes are normal.

It’s beginning to piss me off. I’m going Monday the 2nd page of the pathology report. But, I already know what it says.

What I want is to do another colonoscopy and endoscopy before I go on this stelara. I want eyes on it. I’m open to suggestions
Posted 4/28/2023 1:55 AM (GMT 0)
This is only Thursday. I can get the report tomorrow.

I brought up to my new GI about doing another colonoscopy and endoscopy before more meds. He boo-hooded that. Said he likes to do colonoscopies 6 mos after treatment initiation. I wasn’t gonna argue with the man. He’s 40 years old and has practiced medicine in 5 different states already. Why is that? I’m not gonna ask him and I’m not going to let him do a colonoscopy on what could be a diseased colon. I’m going to depend on my PCP to get me into his own GI…the one he uses for himself.
Posted 4/28/2023 3:18 AM (GMT 0)
When was the colonoscopy that led to the diagnosis? Two years ago? And have you had another since then?

Did you have any radiation treatment for your prostate cancer? If so, was that before the colonoscopy finding the colitis?

Yes, if you can, get the rest of the report tomorrow and let us know what it says.
Posted 4/28/2023 3:19 AM (GMT 0)
Have you ever had blood with bowel movements, either fresh red blood or dark/blackened "old" blood?
Posted 4/28/2023 3:35 AM (GMT 0)
The GI has been in 5 different states?. I'd be using your doctors GI too. I've never heard of a GI wanting to wait on a scope. Usually they confirm the disease with blood work and a scope then make the medication recommendation.. and 6 months to a year later they do another scope to see if there's any difference--unless you have ongoing issues during that 6 months to a year... And then they'll go in sooner. I've gone thru 3 or 4 GIs and they all. wanted to do a scope before they started any treatments. But then again.... At least he is getting you on meds right away.

Clo
Posted 5/2/2023 6:08 PM (GMT 0)
Was your last colonoscopy 2 years ago? If so, I'd think most GIs would want to do one before starting a new medicine to see what's going on. However, I don't think it's a terrible thing to wait at this stage either. I hope you find a new GI who you trust. That is odd he said I'll call you in a month with a treatment plan. I would've been bothering him much sooner than that.

Nevermind, I reread and see you had a scope a year ago.
Posted 5/2/2023 7:21 PM (GMT 0)

beave said...
Have you ever had blood with bowel movements, either fresh red blood or dark/blackened "old" blood?

No. I’ve never seen blood come out in my life. Red or dark.
Posted 5/2/2023 7:24 PM (GMT 0)

beave said...
When was the colonoscopy that led to the diagnosis? Two years ago? And have you had another since then?

Did you have any radiation treatment for your prostate cancer? If so, was that before the colonoscopy finding the colitis?

Yes, if you can, get the rest of the report tomorrow and let us know what it says.

Dx’d 2 years ago. Colonoscopy. Had pain one year ago. No sign of UC w/ colonoscopy.

Never had radiation treatments in my life. Surgery only for prostate ca.
Posted 5/2/2023 7:50 PM (GMT 0)
Diagnosing pathology report from 2021…

A. ANTRUM BIOPSY: Reactive gastropathy, involving gastric mucosa primarily of antral type, present in a background of mild chronic superficial gastritis. - Foveolar cell hyperplasia with associated glandular regenerative activity and fibromuscular stromal changes, compatible with proximity to healed or healing site, such as an erosion or ulcer. - No significant nuetrophilic inflammatory activity.

B. SECOND AND THIRD PART OF DUODENUM BIOPSY: unremarkable for infection or disease

C. TERMINAL ILEUM BIOPSY: Negative for everything. Unremarkable.

D. MID-ACENDING COLON BIOPSY: Nothing to report. All clear.

E: DESCENDING COLON BIOPSY: Chronic mucosal colitis. Negative for dysplasia. SEE COMMENT.

F: SIGMOID COLON BIOPSY: Chronic mucosal colitis. Negative for dysplasia. SEE COMMENT.

G: RECTUM BIOPSY: Unremarkable rectal mucosa. No active proctitis. No gramulamas. Features of idiopathic inflammatory bowel disease not present. No evidence of microscopic colitis. Negative for dysplasia.

COMMENT BELOW…
Posted 5/2/2023 8:01 PM (GMT 0)
CASE COMMENT:

The descending and sigmoid biopsies show evidence of chronic colitis, including mild archectural distortion, variable expansion of the lamina propria by mononuclear cells and some evidence of basal plasmacytosis along with acute cryptitis and associated crypt abscess formation. Overall, provided a prolonged infectious process has been excluded, the features are most compatible the active phase of chronic idiopathic inflammatory bowel disease. However, given the provided clinical information, especially if the inflammatory injury is limited to areas of diverticular disease, segmental colitis associated with diverticular disease (SCAD) is also considered. Clinical correlation may be helpful.
Posted 5/3/2023 12:02 AM (GMT 0)
I hope one of the members who really understands these reports comes along and can explain what it all means. I don't see anything that really screams ulcerative colitis. You said the scope you had last year showed no sign of disease, right?

Based on you saying the original symptoms you had were gone before you even started Humira I really question whether you have UC at all. It was also strange that they went right to Humira with such mild symptoms.

When was the last time you had routine bloodwork (CBC, CRP, Sed, etc)? Also, have you had a faecal calprotectin stool test done?

You probably need a scope to see what is going on.

I can get a constipated if I don't have enough fiber in my diet, but as soon as I have an off day I increase my fiber intake and things go back normal withing a day or 2. But I also increase my water intake and have used miralax if needed.
Posted 5/3/2023 1:18 AM (GMT 0)
This doesn't sound like UC to me. UC inflammation almost always includes (starts at) the rectum and goes up from there. Your rectal biopsies were clear. UC usually involves diarrhea, and often with blood, neither of which you have.

Crohn's disease, on the other hand, is a possibility here.

Have you had stool tests to check for infectious agents?

When they did the upper endoscopy (of your stomach), did they test for h. pylori bacteria?

What medications have you taken in the last couple of years, both prescription and over-the-counter? Any NSAIDs like aspirin or ibuprofen? And what about acid blockers (PPIs) like Prilosec, Prevacid, Nexium, Aciphex?

Do you drink a lot of alcohol?
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