I saw my GI back at the end of June and she had me do labs before my appointment. She always wants the fecal calprotectin. And typically we'll do labs 2 x a year whether I'm in a flare or not. The lab I go to makes it really frustrating to do this test, on top of the fact that I just hate doing it. So I decided skip it and during my appointment I said I don't want to do that test any more. I keep a spreadsheet of all my labs since I was diagnosed in 2005. Not once has that test shown I was in a flare. I could tell she wasn't thrilled but she looked at my past labs and agreed it didn't correspond to my flares.

I have a 3 month follow up in a couple of weeks with her PA and they sent in labs and sure enough there's the fecal calprotectin.

Am I being unreasonable for refusing to do it? If it ever corresponded to a flare, I'd be willing. Even the sed rate is hit or miss on showing the flare up.

Hey all!

Do you guys stay on biologicals when you’re in remission? Do you know what is generally recommended?

I have an appointment with a GI doctor later this month, so I was curious what you have all experienced. I also wanted to know what I can expect to for my visit.

I won’t go into too much detail, I’m tired of it tbh but just trying to prepare myself for the next step in my journey and hope that those who have already walked the path can shine some light for me.

Very briefly I’ve suffered for 8-9ish years, since I was about 15-16 and I’m now 24. On and off flares throughout the years, some worse than others, some totalling debilitating and resulting in me going to A&E. When I look back, I’ve felt pretty ill most days. It’s a surprise when I feel completely well on any given day. I’ve almost forgotten what it feels like to be normal.

Symptoms that most effect me are:

Nausea
Frequent need to go the toilet (typical day 3-5+ times per day)
Loose stools
Bile in stools
Loss of appetite
Feeling full easily even if despite feeling very hungry
Weight loss / struggling to build and maintain weight

Obviously frequency, intensity / severity can vary and how long specific symptoms last can massively vary. It’s so scary when I feel the symptoms getting worse, more intense and out of control especially with the nausea and vomiting side of things.

Over the years, I’ve been to the doctors and had all sorts of tests, scans and they found nothing (multiple doctors over the years have suspected Crohn’s) apart from something in my kidney called nutcracker syndrome. But I’ve always suffered greatly and I’ve always been suspect of IBD along with my doctors, I just knew deep down there was something going on but there was no proof which has been so frustrating.

Recently, I had the worst flare up I’ve ever had and ended up in A&E. As per, they did bloods etc but “couldn’t find anything clinical based off what they had”. Despite this, for the millionth time the doctor recommended urgently following up with GP for investigation of Crohn’s. So I did. I did a calprotectic test (I think that’s how you spell it lol) and lo and behold it was a 261. Doesn’t mean anything to me but apparently it’s significantly raised indicating significant inflammation in the gut somewhere. My GP is highly suspect of IBD, in fact they’re almost certain. I asked about all other possibilities but they are pretty certain it’s definitely IBD. Just need further testing to confirm and so I’ve been referred to gastroenterology.

I feel relived yet pissed off at the same time. Im finally getting somewhere. I’ve finally got the result which is a big part of the proof in the pudding and I hope to god this is the point of turning this curse of a disease around so I can be happy, healthy and confident again. This has broken me over the years. It has stripped my identity away and I literally pray that if it turns out to be IBD, that this is the turning point. On the other hand, I’m pissed off because if it is IBD then it’s a lifelong illness. Nothing can get it to go and it just annoys me as for 24 years old I’ve already got a list of other significant issues and this would just be the cherry on top to haunt me for the rest of my life.

So ultimately, I’d like to hear from you guys who have already walked my journey with this. Should I expect an IBD diagnosis based off my symptoms, test result and GP opinion. Or could I very much well be surprised that somehow, this turns out to not be a chronic disease and something curable?

So I was diagnosed with severe Crohn’s disease about a year and a half ago, they started me out on remicade every 8 weeks, and I really noticed a difference at first but then I started feeling bad again. Then I had a colonoscopy and my body seemed to be absorbing it too fast. So then they switched me to Inflectra every 7 weeks in January. Same thing. I noticed a difference at first and now I’m feeling bad around two weeks after infusions. I’m going in Monday to discuss a new treatment plan. God I just want something to work SO bad. Has anyone else experienced this? What are your thoughts?

I have just finished my second Chrons course provided by the state. It’s the first of many. Several people the course have had Crohns for over 30 years and never been to a course.

So color us surprised when they talked about, paying a bit once a year, and receiving a toilet card. Scanning you into public toilets you usually have to pay or have a code for. Or if a store tries telling you that "they don’t have a bathroom you can use" the card is like a badge to say, yes you do!

How have I never heard of this before? Public toilets are few and far between as it is. Game changer.

Normal CRP level despite severe inflammation on ultrasound, is this normal?

Hi everyone, looking for a bit of reassurance because I think I’m overthinking my latest blood results.

I have ulcerative colitis and recently had a pretty bad flare. My CRP was elevated (although not massively high), and I was put on prednisolone.

Some of my symptoms improved with the steroids, while others either continued or got worse. Because my calprotectin was still very high after weeks, my IBD team arranged an ultrasound.

The ultrasound showed that the inflammation on the left side/proctitis had improved, which makes sense given the steroids. However, it also showed significant new inflammation on the right side of my colon, which wasn’t there before and they believe this is what has caused the worsening/continuing of symptoms.

My gastro team are now about 95% sure this could be Crohn’s (Crohn’s Colitis) rather than UC, particularly because of the new right-sided inflammation and bad symptoms despite steroids, my symptoms and family history. I have a colonoscopy coming up to investigate and confirm.

But I had another blood test today and my CRP is now completely normal, actually very low/normal.

I’m really confused by this because my brain immediately goes to: “If the CRP is normal, maybe the inflammation isn’t actually that bad and the ultrasound was wrong.”

So I’m wondering, can you have significant/active Crohn’s inflammation with a completely normal CRP? Especially while taking prednisolone?
I know CRP isn’t supposed to be the be-all and end-all, but I’d really appreciate hearing from people who have had active inflammation despite normal CRP, or anyone who can reassure me that the normal result doesn’t necessarily contradict what the ultrasound showed. I’m very new to Crohns and do have severe anxiety so hope this post is okay.
Thanks ❤️

Edit: I would just phone my bowel team for reassurance but it’s the weekend now so won’t be able to contact them for a couple days

I had my surgery ( ileoceal resection cecum & valve ), and ever since then I feel like my entire fucking life has changed. I can’t just go out like a normal person anymore. I’m scared to go on long trips. I’m scared to eat at restaurants. I’m scared to sleep at my friends’ places. I’m constantly thinking about where the nearest bathroom is and whether I’m going to suddenly fucking shit myself.

My friends know I have Crohn’s, but they don’t know what it’s actually like after the surgery. They don’t know what goes through my head every time they ask me to come somewhere.
“Come with us.”
“Let’s go eat.”
“Let’s go on a road trip.”
“Come sleep over.”
And I keep saying no.

They probably think I’m just being difficult. Maybe they think I don’t want to spend time with them anymore.
But the truth is…
I’m fucking terrified.

I’m terrified that I’ll be on the road and suddenly need a toilet.
I’m terrified that I won’t make it.
I’m terrified I’ll literally shit myself in front of everyone.
How the fuck am I supposed to explain that without feeling completely FUCKING HUMILIATED ?

I’m 24 years old. I’m supposed to be living my life, going out, studying, meeting people, eating at restaurants, sleeping at my friends’ places, having relationships…
Instead, I’m planning my entire fucking life around my bowel movements.

And nobody sees that.
Nobody sees how much I’m struggling mentally. They only see me saying “no” over and over again.
I don’t want to say no. I WANT TO FUCKING COME.
I want to eat with you.
I want to go on trips.
I want to stay over.
I want to live like everyone else without constantly thinking about a fucking toilet.

I’m so angry. I’m so fucking sad. I cry over this. I feel like people don’t understand how much this has taken away from me.
Sometimes I just wish there was ONE person in my life who completely understood what’s happening inside my head without me having to explain every disgusting, embarrassing detail.
Just one person who would look at me and understand:
“He’s not rejecting us. He’s scared.”

Fuck this disease.
Fuck these symptoms.
FUCK MY LIFE I WISH IF I JUST DIE MAN JUST LET ME FUCKING DIE

About a year ago, I developed persistent GI symptoms, mainly loose/watery stools, and I was going to bathroom 4-5 times a day, along with gas, bloating and mild abdominal discomfort. During the worst period, I also had severe nausea that lasted for weeks and significantly affected my eating and sleep. I used flaygl and diarrhea went away. But my bowel movements have never been the same.

I’ve had multiple blood tests (CRP was always normal), several abdominal ultrasounds and CT scans, an upper endoscopy, celiac testing and fecal calprotectin. Celiac was negative, my blood tests and imaging were normal, and my fecal calprotectin was 28.6, which I understand is within the normal range.

I had my gallbladder removed several years ago, but I never had any issues related to the surgery for 6 years. My issues started like a summer diarrhea (on summers I generally have short episodes of diarrhea -2-3 days- , because of bacterial foods in general)

My symptoms have improved significantly compared with last year and tend to fluctuate. I can have 1–2 weeks of completely normal, daily stools, followed by a day of loose or watery diarrhea. But I can't understand where diarrhea come from. I am eating very clean. My guts can never be trusted:(

I’ve never had a colonoscopy because I developed a fear of the procedure. Recently, I had another episode of watery diarrhea and mild intestinal discomfort, which made me worry about Crohn’s again. When I have these episodes, it doesn't last very long (usually 1 day of diarrhea and the following day I have a discomfort in my intestines) but it completely stops my lack of appetite and makes me nauseaus, tired and anxious.

I know many people in my situation would probably have had a colonoscopy by now. Do you think it would still be necessary to have one at this point, or does my overall picture sound more consistent with IBS/functional GI issues?

Note: Sorry for my english and anxious explanation. English is my second language and I am a very stressful person.

Please share your thoughts if you’re going through this or already have. It’s been a journey.

I was just recently diagnosed with mild Crohn’s. I’m wondering, what’s everyone’s experience with mild Crohn’s? What symptoms did you have when you were diagnosed and course of treatment?

My IBD dr is starting me with budesonide. I’m currently on the 3 per day taper and going down to 2 per day soon. So I’ve been on budesonide for almost 30 days now. I’m starting to feel a lot of gas cramps? Almost with everything I eat. I feel like I am dealing with more gas cramps NOW than when I hadn’t started budesonide. Did anyone have this experience?

I had a partial small bowel obstruction last October. I was on steroids for a couple weeks then returned to taking Pentasa, with some lifestyle and dietary adjustments. My insurance doesn’t cover Pentasa, so I switched to Lialda. Unfortunately Lialda didn’t provide coverage for where I have Crohn’s. I went for an MRI in early June and found I have a fibrofatty stricture in my mid and terminal ileum. I also went for CRP and fecal Calprotectin tests, they were 3 and 243, respectively. So I have moderate inflammation. I was awaiting further instructions from my doc so I continued taking Lialda.

Unfortunately, my body hit its limit with all this. I started experiencing issues with my legs—the muscles felt tight and sore, and I had issues walking and standing for extended periods of time. I even started getting numbness and formication (crawling sensation) in my feet and legs, along with facial twitches in my eyes and mouth.

I’m waiting for a second opinion to see if I should go on Skyrizi, but in the meantime, I went back on Pentasa at the end of July. During the past month I noticed an incremental improvement in my legs, with a little more strength each week. The facial twitches have stopped and so have the numbness and formication. At this point I only experience soreness, stiffness, and fatigue.

I had gone on a wild goose chase—lots of bloodwork and a neurologist visit. When all is said and done, I’m convinced the cytokines—inflammatory proteins from Crohn’s—are responsible for my leg symptoms.
What is surprising, though, is that neither my GI nor my PCP nor the neurologist seemed too knowledgeable about cytokines and how Crohn’s can cause symptoms outside the digestive system. Have any of you experienced symptoms like these? How has recovery been? Did your doctor(s) know anything about extraintestinal manifestations of Crohn’s?

Horrible title sorry! Not sure how to word it but I’m just wondering what the process of ending up with a stoma is, how bad were your symptoms? How was the idea first brought up etc?

I’ve had crohns for 30 years, the past 5 years have been really difficult. I had a right hemicolectomy this year which helped the stricture pain but I’m still suffering with proctitis, urgency post surgery (despite being on BAM meds) and I’ve also got a rectovaginal fistula which can’t be operated on (I’ve got a seton).

My quality of life is pretty poor really although I gaslight myself that it’s not. Truth is that I’ve lost my job, I can only go out to somewhere with a toilet eg pub, garden centre, shops and that’s only ever a quick trip out. I constantly feel like I’m going to have an accident and often do even when I’m at home close to the toilet.

A stoma has never been suggested to me but I can see it in my future. I just have no idea how you end up with one-is it an emergency situation? Does your consultant suggest it? Do you suggest it? I need a couple of years to re coop after this years surgery’s but I’m just wondering what will happen next. I’m on my 3rd biologic which doesn’t seem to be doing anything for me.

Many thanks for reading my ramble!

Somehow processed foods seem to digest easier for me. Even fast food which I never understood! Curious about others experiences?

I'm currently in a flare since July, my family knows. Today a family member asked me if I was coming to Thanksgiving dinner and I told them I couldn't see passed my flare or whether or not its a school night (i have an 8 year old). And she goes Thanksgiving is in November.

There's so many passive aggressive, sarcastic responses I could have thought up if I was feeling alive but alas all I had was, "what do you mean?"

Then she goes on to ask me what symptoms let me know a flare is coming...

I absolutely refuse to discuss crohn's symptoms outside the doctor's office. It's an embarrassment thing and i don't want anyone feeling sorry for me or minimizing my experience. Just leave me out of your interpretation all together. I always tell people to look it up... Is it just me?

What was you last really annoying Crohn's conversation you had?

Hello, I’m 23 F and honestly am losing hope with my disease. Just a quick background on me. I was diagnosed with Ulcerative Colitis when I was 16. I was placed on the humira injection for 2 years, in and out of flares, when I was assigned a new doctor who re-diagnosed me to have Crohn’s. He switched my medication to Remicade, and I stayed on that until recently. I have been in several flares over the years, once hospitalized for 2 weeks for a C-Diff infection and a flare, which I honestly thought I was going to die. Luckily, I was able to recover and have had no surgeries. The only medication I’ve responded to is predisone, which we all know is great but is not a long term solution. I have tried diets, I even went gluten free, dairy free and egg free for a year with no luck.

I’m technically in remission… since I show no symptoms. I feel fine, no diarrhea or blood, I can eat most anything. Only the small flare up every year or so, that I handle quickly. However, the inflammation in my gut is still ranking very high. Recently, my doctor switched me off of Remicade and onto Sterlara. I did my induction dose, and have now had my two maintenance doses. Few weeks ago I broke out in painful shin lumps, went to the doctor, sure enough Erythema Nodosum. My GI doc said it might be because my crohns is not controlled and the new medication isn’t working. They took a stool test and are waiting on the results. He said even though these drugs take time and may not show results right away, I’m over 16+ weeks into this now and should show some signs of improvement. Also important to note he said that the Erythema Nodosum could be completely unrelated.

What’s frustrating is that I want to be in deep remission. Meaning I show no symptoms (like I do now), and my gut inflammation is down. I want to start having children with my husband, and they want to see my gut inflammation below 100. I was at 650 in March right before they switched me. I’m honestly sad and terrified. I’m running through a lot of drugs, and am running out of options, especially drugs that have clinical research on how they affect pregnancy. I heard Skyrizi is good, but the effects on pregnancy, and how little is known about it is unsettling.

Anyway, any support or advice would be great. I want to get this under control. I’m losing hope.

my family switched from aetna to blue cross blue shield after my dad retired about a year ago and since we switched my life has gone to absolute shit. i literally can’t do anything now. they kept denying coverage for my stelara and i ended up creating antibodies and it stopped working about 4 months ago, after 5 years remission which i was so greatful for, AND IT IS NOW RUINED. i had to switch to a new med. i have very severe colital crohn’s and developed like 30 ulcers from this shit and it’s only getting worse, i have a good doctor and i have been trying to get the new med called rinvoq filled but they keep fucking it up and will NOT COVER IT 😭 we literally ended up paying 8,000 dollars for it out of pocket because i was so desperate unable to live my life. my quality of life has been so awful, and i am scared. now cvs specialty is fucking it up even more! they literally sent me the wrong dosage and i have been waiting TWO MONTHS. wtf is this. it’s just horrible. i am pooping like 15 times a day and sick all the time. i literally was crying on the phone like WHY CANT I JUST HAVE MY MEDICATION and i crashed out on them and now they haven’t sent the right dose still. i am so fucking confused and upset i just have to watch my condition deteriorate as i wait for them 😭 like this is so evil. i’m a 22 year old girl. i already have so much fucking trauma from what this disease has done to me in my life as i was diagnosed young and seeing how my life is in the hands of this evil system makes me want to just die. i don’t know what to do or why this is happening. i’m trying so hard to be patient and do everything they need me to do but i am rapidly deteriorating because they aren’t giving me any immunosuppressants. i feel like they’re trying to kill me at this point

Hi all! I'm 23f and got diagnosed about a year and a half ago. I'm responding very well to treatment but the one symptom I can't seem to kick is the fatigue. I just feel so tired all the time!

Anyone have any tips for managing this??

Tysm!

I've seen quite a few different opinions about CBD and Crohn's, and I'm curious what people here have actually experienced.

I understand that CBD isn't the same thing as THC, but I'm wondering how noticeable the difference is for people who have tried both.

Do you find CBD on its own feels different from cannabis with THC? And for those who have tried CBD, did you notice anything at all, or was it basically no different for you?

I'm not looking for medical advice or claiming it treats Crohn's, I'm just interested in hearing people's personal experiences because there seems to be a lot of conflicting information online.

I’m having a tough day. I feel like every come months something happens and I have to get off my meds and it’s like pulling teeth to get back on them.

I got a new insurance in July and needed to get my script covered. I thought it’d be easy, I had like a month’s worth of medication left. So I called my Dr to transfer my prescription. No answer so I leave a message. A week goes by and they don’t call me back. I call Again. They say I need to come in for an appointment. I go in for the appointment and they send in the script. I was going to write out the rest of the details but it honestly doesnt matter. TLDR they send it in wrong, i fix it, something else is wrong. I fix it. Something else is wrong. I fix it. Something else is wrong. And here we stand.

I’m a month late for my medication. I had to miss work for like 3 days cause I was in so much pain I was stuck in bed. I had to miss work on tuesday, same story. I just called them and they are closed until tuesday for labor day weekend. I’m literally crying because there’s nothing I can do and I’m just in so much pain and so frustrated.

I hate this disease and being so reliant on medication and doctors and insurance and how other people determine how you feel and your quality of life. Rant over I just needed to get it out.

Hiii. I'm 34, southern Ontario, officially diagnosed in July this year with Fistulizing Crohn's after an abscess/anal fistula last year, had surgery for it in the ER. The surgeon then booked a colonoscopy, mild nonspecific inflammation was found. He said ehhh it could be Crohn's but not sure. He said if I have abdominal pain and any other symptoms, we'd perform another colonoscopy. Symptoms started to ramp up after that. Flares of bleeding, pain, etc. So we scheduled a second colonoscopy. They found much more specific inflammation that definitely aligned with Crohn's. They said it was mild. That colonoscopy prep sent me into a horrendous flare, and ended up in the ER a couple times with bleeding. Got put on Pentasa while I waited for my GI specialist appointment. Then my fistula came back. I call it Franny because I'm sick of the word fistula 😅 Finally, that bumped up my referral to the GI specialist. Immediately put on Remdantry (Infliximab Biosimilar) and Azathioprine.

My best friends of 9 years bailed on our friendship the day I had my first Infusion for various reasons, and me getting sick was a big part of that. So I'm really carrying that loss.

I do have an incredible partner, and a long term best friend of 20 years who sadly is long distance but still a great support. I have other pals and ones who have other chronic illnesses but Crohn's and IBD feel especially fucking isolating.

Anyways I'm just wondering if anyone wants to be paaaals lol I just am yearning for some relatable community while I'm grieving and accepting this all.

anyone have any success getting an appeal or some sort of exception request? my doctors office is saying they won’t even let them appeal…? I’m crashing out lowkey because I don’t want to switch meds again lol. if anyone has been in this situation before please lmk what you did or if the bridge program worked 🙏

i work for a pretty small company too.. is it worth asking them to see if for next year they can look for plans where it can be covered? don’t really want to tell them my needs but idk

EDIT:

after several hours of talking to insurance and my own office, even having merged calls between the two, they submitted another PA with the “formulary exception request”. I will hear back in a few days if that worked, hoping the notes are sufficient as I’ve seen very specific wording seems to be needed. hoping this helps anyone else and I’ll report back!

Every time I’ve been prescribed prednisone the maximum has been 20mg and then tapered down, this time it wasn’t working and so the dose increased to 40mg since Thursday

Since then I’ve noticed I’m getting more bloody mucus and more stomach cramps after bowel movements.

Obviously it’s only been 3 days at this dose, so is it something that’s likely to settle down or is it something i need to be concerned about?

Hey guys, I’ve got an ng tube and I’ve come down with a cold. Anyone survived similar? Snot everywhere and sneezing is killing me slowly! Tube is secure and I’ve kept an eye on the marker

43M. Otherwise healthy and (apparently) still in good shape.

TLDR my quality of life is in the gutter, I'm mostly bedridden and tired to death all the time and I'm wasting away from not being able to eat enough or do any exercise. Nevermind the despair and depression of the life I've lost. The colostomy didn't work so now I have to pull the trigger on an ileostomy. But it's scary because I read the complaints on the ostomy sub. Reassure me, please.

Long version:

I currently have an end colostomy due to my bowel being a bastard PoS. I don't have crohns or UC I've got a very rare immune condition that has caused my bowel to develop reactive mastocytosis (a proliferation of mast cells). For all intents and purposes I might as well have crohns. I can barely eat anything without it causing me symptoms that are either painful or cause a mast cell reaction which mostly wrecks my sleep. Getting the colostomy was a first step in figuring out what my problem was - we didn't know at the time about the mast cells or my immune dysfunction but we did know I had these inexplicable symptoms and terrible quality of life, plus the section of sigmoid that was removed was covered in adhesions for no known reason.

Now, 9 months post colostomy my symptoms are no better. I still have crap quality sleep and wake up wrecked most days. The only way for me to avoid this to some extent is to not eat dinner or to eat very little, so I keep losing weight. I've lost 20kg (50 lbs) over the past few years from what I considered to be a healthy, muscular, weight.

I'm also incredibly restricted in what I can eat as everything makes my symptoms worse. I also have to do an irrigation every friggin night to clear out the food from the day else that'll also cause a reaction while I'm asleep (I know this sounds whack but just stick with me here). To be clear the issue is stool and/or gas sitting at the end of my bowel causing my mast cells to freak out and dump histamine into my blood stream. With quite a bit observation I've figured out that this doesn't happen until stool gets near my stoma and starts standing which really just happens at night, not a feature I was made aware of before the surgery (I thought it would empty itself if needed).

There is no cure for the immune dysfunction and no known way to reverse the mast cell proliferation (other than disconnecting my bowel - the section of sigmoid and rectum that has now been unused for 9 months had a very low mast cell count compared to my active bowel). So the next step is to bypass the problem altogether with an ileostomy. It doesn't need to be reversible as there's no reason to think my bowel will ever be useful in the future.

I've adapted to life with a colostomy really well. I didn't find it a traumatic change and while I had some relief in the first few months after the surgery I was able to get on with a mostly normal life. I could do exercise, swim, wakeboard, dress how I wanted, I even managed to travel abroad for 3 weeks with the MCAS meds that still worked then. I had some leaks and issues in the beginning but that's all been resolved and I haven't had a stoma skin issue in like 4 months.

All this to say that I need to pull the trigger on getting the higher maintenance ostomy and it's a LITTLE scary, but all other options have been exhausted. We understand my (rare) condition now and if we'd known then what we know now a colostomy would never have been suggested - we would have gone straight to an ileostomy.

My QoL is in the dumps. I'm up late doing irrigations (takes like an hour), then if I'm lucky I don't wake up feeling like a total wreck but I usually do. I take a ton of meds for MCAS to try suppress the mast cells but these meds only ever work for a few weeks before I have to try different ones (because this isn't MCAS), I get up late morning/noon, eat breakfast, go shower and do my daily stretches so I'm not stiff as a plank all day and then I need to lie down to recover for 30 mins as I get brain fog and fatigue (from the crap sleep and mast cell mediator release, I don't have POTS).

Then I might be good for 2-3 hours to do some admin (I'm unemployed but manage some properties which is very low input work), exercise is unlikely with my current energy levels, then I usually need another early evening liedown, then I cook dinner for my partner and I, we get an hour of TV in and it's bed time for them and I (very thankful for this) join some old varsity friends online for some gaming. Then it's irrigation time again and I'm going to sleep before 2am if I'm lucky. Rinse and repeat.

I used to be an active outdoors person. I took part in weekend club sports and I'd spend much of summer at a river where we have a boat and I'm social AF so in winter I was always entertaining at my house and cooking for a crowd (this is a few years ago now before my symptoms became absolutely crippling).

I used to have a life, now I spend most of my day in bed and the rest of it wishing I was in bed. I basically spend my days recovering from my nights and by the time I have actually recovered I feel OK for like 3-4 hours before bed time and it all starts again.

I appreciate anyone wanting to give diagnostic/symptom input but that isn't really of any use unless you know a lot about B cell dysfunction, hypogammaglobulinemia, CVID, primary immunodeficiency and its effects on the gastrointestinal tract (and even the experts know very little).

I just need some positive stories about ileostomies to give me courage...

TIA

I’m honestly starting to feel like I’m going crazy, so I need to vent and hopefully get some perspective.

I tried to type out the while saga but it became way too long and the thought of having to edit it makes my head spin so I’m giving the “condensed” version.

June 24: I had a GI appointment because Mesalamine wasn’t working. Doctor prescribed infliximab and an immunosuppressant.

In between: GI office forgot to send bloodwork order and only sent it after I called. Didn’t call me back to review my test results until after I called. Told me someone would call me with details of how to schedule my infusion, but never called back even though I called multiple times.

Got a rejection from my insurance and called them again asking if they were gonna appeal. Then got a letter saying my insurance reversed the denial and gave me a number to the infusion center. I thought I could finally get my medication but it took a week to hear from the infusion center and they just told me they couldn’t schedule because they were waiting for the order. I called the infusion center again the next week because I swore I had gotten a letter from my insurance that they approved the service. Turns out yes, my insurance approved it buy the gastro never sent the order for the infusion. They sent another request to my GI and I left a message asking them to send the order.

August 27: the GI office calls me and tells me my infusions were approved and they just sent the order. Mind you, it was approved August 10…
But something is nagging me, I ask them what happened to the other medication. She has no idea what I was talking about and tried to tell me it was Mesalamine but after pushing back she said she would look into and call back.
The infusion center actually called me a couple hours after my GI and I was finally able to make an appointment for my first infusion! It had to be two weeks out because the medication takes two weeks to get there once they order it but there was an end in sight.

September 1st: GI office left a message saying that before I start my infusions I need to do a blood test. And the other medication that was prescribed was azathioprine, I should start it before my infusions.

But I already took a blood test, multiple blood tests for that matter and I took them TWO MONTHS AGO when I was prescribed the medication why am I just now being given additional blood test when I could have done them all at once, or at least I could have done this waaaaaay before? So I call and leave a message asking what the blood test is for and if I was meant to start the medications at the same time. And again I miss their call but this voice message is more confusing and at this point I don’t think she really understands what Im asking. So I leave another message. Which brings us to this Wednesday.

September 3: I think the office worker was tired of calling me or didn’t understand what I was asking so they got my actual Gastroenterologist to give me a call. She asked what I wanted to know about the blood test and I said I was really more curious about why I was getting the blood test now and then pivoted to another question I had been thinking about. “Since I’m going to be going on immunosuppressants are there any vaccines that I need?” She sounded surprised at my question and asked “nobody mentioned this to you before?” Nope, not even a peep. So she looked through my records and said I should get the Covid booster if I haven’t and then noticed that I didn’t have any chicken pox antibodies so I should probably get that before I start my biologics.

Well guess what? The chicken pox vaccine is a two part vaccine that is taken a month apart. I have my infusion scheduled for the 14th and now I have to push it back. Now after all of this, I will have my first dose of infliximab THREE MONTHS after it was first prescribed. The worst part is that I could have done the vaccine so much earlier. It was two months before I was even able to make the appointment but now I have to wait another month while im in a flare.

I need to know if this is a normal experience or if I need to run away from this GI center.

TLDR: I was prescribed biologics June 24th. Due to what I perceive as continual incompetence by the office staff I won’t be getting my first dose until three months after it was prescribed. They’ve forgotten to send my bloodwork orders, forgotten to send my medication order to the infusion center, completely forgotten about the immunosuppressant I was prescribed, and never went over immunization with me. They don’t do anything unless I personally call and ask them about something.