I am very confused

[mygutssuck]

Hello, not sure if an posting in right spot or not, am new here. Was seen in emerg last week due to some bloody diarrhea, rectal swelling, thrombosed hemmies (2) & nasty fissures.

Dr put me on prednisone and pentasa due to prev history of crohns and proctitis. Haven't been on anything for about 7 yrs because I was told my last scope was good and no crohns. ER did dome blood tests and plain abdominal X-rays, not sure what they showed. Dr came back after reviewing, checked my liver, did rectal exam, pulled up scope report from 7 yrs ago again and could hear him tell nurse that "yep, it's crohns, she has crohns, that's why" and he then came back to talk to me. Just said pretty sure your crohns is back, referred you to GI Dr. They'll call you, fill these prescriptions (prednisone, pentasa, ointment & suppositories) and come back if gets worse.

I am confused because I was told after the last scope no crohns, just IBS. I didn't think plain X-rays showed crohns, so not sure what this is based on now. I should have asked, but was not with it I guess; it's all very strange. Bleeding finally slowed down today after a week, still going to bathroom alot though, right lower side still hurts, my lips and mouth hurt, and feel like garbage still. Sorry, not sure if I am even making sense, just really confused & guess looking for some input about all of this and maybe a timeframe for when should hopefully feel better; am exhausted, ha. Took Immodium yesterday so could get through work day, which helped, but none today.

Thank you got any input anyone can provide.

 

[Dreamer]

Sending positive thoughts towards you. I hope you feel much better soon.

 

[mygutssuck]

Thank you Dreamer, I appreciate it Bleeding is almost gone now, but right side still hurts quite a bit. Hope you are doing well!

 

[Dreamer]

I am glad the bleeding is getting better. I am sorry I have no knowledge about this to offer you but the people here are awesome, I am sure they will give you a helpful response. I really hope it gets better. My thoughts are with you.

 

[ronroush7]

Hope you feel better soon.

2

 

[KayleighMeek]

Hello sorry to hear you are having a tough time.
Was the last scope you had 7 years ago?
Even if the last scope was clear it could mean that you are no longer in remission and are h having a flare. The symptoms you are having now have you had them before?
I would agree with what the dr suggested you need to see a GI and get checked out. Pred works really quickly and will get symptoms under control but usually people will notice they return once you begin to taper. Hopefully the Pentasa will help but your GI may suggest something else.
Do you have a date for your appointment?

 

[mygutssuck]

Thank you all

Yes, my last scope was approx. 7 yrs ago and I was under impression Dr. felt that since scope was clear, I no longer had a Crohn's diagnosis. I was given Pentasa and Colestid to take after anyways, but discontinued on my own because I didn't see why needed them if no Crohn's (big mistake per ER Dr, should have stayed on them).

Had symptoms if diarrhea, nausea, pain, mouth ulcers, esophagus ulcer (that was no fun), weight issues, recurrent inflammatory proctitis, etc on and off since late teens. I have had bleeding before, but not as bad or as long as this last bout. I've been controlling symptoms over past 7 yrs via diet restricting dairy & gluten due to blood tests showing intolerance and allergy.(not celiac) Also been using Imodium as needed so can work.

This all seemed to work at keeping things at bay for past 7 yrs, with the odd bad few days here & there; that is, before this latest one brought me to ER due to swelling, pain, & bleeding. I've been diagnosed and undiagnosed with Crohn's a lot over the years, depending on what scope shows; it's weird how they change mind and kind of annoying since have no idea if have it or not.

No date yet for GI, have not heard from them yet.

Feeling way better today. I have noticed the pain returns after ingesting the Pentasa, not sure if coincidence or not. Moved to solid foods again last night and so far so good.

Sorry, that was a bit long, ha ha. I am still trying to wrap my head around this. I guess for now I just have to accept that it's Crohn's until told otherwise. ER Dr was really nice and stressed to me I need to stay on the medicine this time.

Thanks for the kind thoughts and support, I appreciate it Sorry for my rambling.

 

[KayleighMeek]

Don't worry about rambling I think we have all done it especially when there is so much going on.
Hope your GI can make things clearer for you.

 

[ronroush7]

Amen. Support and prayers.

2

 

[JRZcat]

Hi, so sorry to hear you are having a bad time! Hang in there....

If you actually have Crohn's disease you will always have Crohn's disease---it does not "go away"---however, you may have periods of remisssion. It sounds like that happened to you.

You should never stop taking your meds just because you feel better. Your meds are what quiets down the CD and then you feel better. You might get away with it for a while, as you seem to have, but you can also have plenty of mild inflammation going on in there without pain or bleeding. If you feel good & have no symptoms you can see, talk with your MD before discontinuiing whatever has got you to that point.

ER doctors are not gastroenterologists; and even gastros sometimes have amazing ideas about medications. When I was first diagnosed, it was by a colorectal surgeon-- an excellent dr. but not a specialist in managing Crohn's----and he had me discontinuing Asacol after a few months because the symptoms abated. Big mistake.

I take Pentasa & Azathioprine now and am doing pretty well on them. I have had CD in colon since age 37 & am now 61. I also had arthralgia in my teens but with no redness or swelling; we now know it was early manifestation of CD.

A biopsy of your colon when doing a colonoscopy will show granulomas, a type of scar tissue, if you have CD, and it will not show that for irritable bowel or even ulcerative colitis. Also, the symptoms you describe in mouth, etc sure do sound like Crohn's.

Having a correct diagnosis is way better than guessing so don't worry about being told you have Crohn's. You already had it whether or not they gave it that name so don't sweat a label, just do the best you can for your body's needs! I hope you get good attention from a gastro who specializes in CD. And my best to you!

 

[mygutssuck]

Thank you all for the support and the info

I actually really thought after the last scope (7 yrs ago) I had been undiagnosed since the Dr said at that time that it was clear. I am definitely taking the medications as directed this time and have a follow up with my family Dr in a couple weeks. Haven't heard from the new GI Dr yet, so guessing it's maybe not too urgent to them. Started to taper the prednisone as per the directions I was given and the bleeding and right sided pain are starting to come back a bit. Been making it through day at work so far. Lower back is aching now too Hope things calm down soon. Seriously regretting not taking the medicine before. This is certainly not fun. Guess it takes time for things to settle.

Thank you all again for everything

 

[Clash]

Did the GI seven years ago just state the scope was clear or did he state you had been misdiagnosed? When it is stated that the scope was clear it is usually a statement of "no active disease" being present at that time, or endoscopic remission not that the patient doesn't have Crohns.

If you are experiencing symptoms as you taper the pred then I would put a call into the consultant and let them know, they may need to get you in more urgently or up your pred dosage until they can get you in.

 

[mygutssuck]

Hi Clash

From what I remember, the GI said the scope 7 yrs ago was clear; no sign of Crohn's and they wondered if maybe the prev scope results were due to prep used then. Said figured it was IBS D and prescribed Pentasa and Cholestid, which didn't really make sense to me if was IBS. I took them for a bit and then stopped because I really thought there was no point if did not have Crohn's - yet ER Dr said he brought up prev reports and did a plain xray (thought these didn't show Crohn's?) and some blood work and told me the prev report said Crohn's and he thinks with everything he reviewed, that I am having Crohn's flare and that "it's back and must stay on my medicine this time". This is why I am so confused. I seem to have gotten the wrong info somewhere along the way.

I don't even know who this new GI is & my Dr's office didn't seem overly concerned when called today. Did speak with Pharmacist and he feels the Advil I took today may be bringing on some mild bleeding and told me not to take anymore ibuprofen, said Tylenol only for pain. He also recommended a Zantac, which helped a lot with the heartburn and nausea He said that if things worsen to go back to ER and also asked if mind if he calls to check on progress tomorrow. Pretty nice Pharmacist, hey?

That's about all I know for now.

 

[mygutssuck]

So, I see my regular doctor on Friday and still no word from GI doctor. Go down to 1 prednisone tomorrow (yay!).

A bit concerned because today noticed a smell, didn't expect it to be me Went to bathroom and saw that had a little bit of blood and some minor bowel leakage. I was pretty mortified because had no idea this happened (leakage). Now I'm scared I'll have an accident at work. Thank goodness was near end of day. Wrapped sweater around waist, sprayed on some air freshener and came home to shower. My doctors office just says will see me Friday, and to go to emerg if bleeding or pain worsen.

I'm more concerned right now about this leakage. I'm super clean so it's not due to not cleaning well. Anyone else have this happen? I don't want it to happen again. Thinking of taking some Imodium when go to work tomorrow so don't have to worry about it happening again tomorrow.

 

[Essieluv]

It's good that you have an appointnment soon, althought it would be better if it was with GI. GI offices are so annoying sometimes....
Those symptoms certainly sound like classic Crohn's symptoms. Did the ER doc think your proctitis was back? I know that can cause some severe rectal bleeding, maybe that's part of the picture here? You could ask your doc about some stool tests tomorrow. A fecal lactoferrin, calprotectin, and some virus and parasite tests might help you find the problem. I hope you feel better soon!

 

[mygutssuck]

Hi Essieluv, thank you for the response

I'm hoping my doctor can do something tomorrow because I feel pretty rotten at the moment.

The ER Dr didn't mention proctitis being back, but wouldn't surprise me because I was told the last time I had it that the procitits could return again because Dr said it was inflammatory, so maybe that is what is going on. Can that make your lower rt side hurt a lot too?

I will ask my Dr about the tests you mentioned when I see him tomorrow. I was thinking of asking him to run some blood work too and see what he thinks about maybe a CT or small bowel follow through being ordered as well. My guts and butt are not happy and I am really hoping he will try to help me.

Thanks again

 

[yellowamc]

Hi im sry to hear ur feelin bad and scared. I know I have had xrays for my crohns, and they told me they look for certain things like gas pockets. I guess its a sign of blockages. I to have had pain in lower right side of my belly. I have had all the test possible over the past ten or so yrs with this. I think the one that showed the most was the upper gi with a ct, they put a tube down ur nose and pump the barium into ur small bowel. Then they do the ct. apparently this will show wall thickness of ur small bowel. They have also done blood work and check my crp level. I hope ur new doc is good and helps ive been there, and I hope u get feelin better.

 

[UnXmas]

It sounds like some of your doctors have not communicated with you that well. As JRZcat said, Crohn's cannot be cured, if you have it, you have it permanently. However, it can go through periods of remission, when your test results show no signs of active disease, and you may well have no symptoms. Unfortunately, though, remission can end and the disease can flare again. Diet cannot stop Crohn's from flaring; the measures you took while off medication may have helped your symptoms (and may well continue to help your symptoms whilst you're flaring), but they're not going to ensure that Crohn's is kept away and it may have been coincidence that you were in remission whilst watching your diet.

From what you've posted, my best guess is that the ER doctor realised your recent symptoms are typical of Crohn's, saw from your records that you had previously been diagnosed with Crohn's, and logically concluded that it is Crohn's that is affecting you now - i.e. that it has flared again, and your remission has ended.

Seeing a GI and starting on medication sounds like a very good plan. You may need some more tests to confirm for certain that it is Crohn's and to assess its severity and whether you have any complications needing treatment. This sounds like your best chance of reducing your symptoms and hopefully getting you back into remission again.

 

[ronroush7]

From 1997 to 2005,I believe it was, I was in remission. Then, the disease decided to flare up again.

 

[mygutssuck]

Thank you all for your responses and input, I very much appreciate it

Saw my family Dr. today and he declined to order any tests or prescribe anything new. He did up the Pentasa I take to a total of 4000 mg a day. I now need to take 2 pills 4 times a day. I was taking 1 Pentasa pill every 4 hrs for a total of 4 a day before.

The Dr. said that the higher dose should help with the diarrhea, pain, and intermittent bleeding that have all come back. I seriously hate those pills and am bummed they got upped. He said he'd prefer to leave everything up to the GI Dr and to wait and see what they decide. I have 1 prednisone pill left to take; Dr. said didn't need anymore of them.

I'm not sure what else I can do while waiting for this GI Dr to call me for an appointment, other then some heat packs, Tylenol, and Imodium.

So, that's all I know; thought I'd give everyone an update and wanted thank you all for being kind enough to respond to my previous posts about this. I read all the responses a few times over and truly appreciate you guys taking the time to respond. Hope you are all doing ok

 

[sarahk]

Iagree withe everyone else. Certainly sounds like crohns...bloody pain in the ar$e literally I too have had episodes of slight bowel leakage and sympathise your not alone let us know when you've see your gI doc and what they say. Good luck.