Surgery

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

I'm curious to know how your post-op went too and what that string was!!

My last visit to the GI a couple weeks ago he mentioned that not a lot of places/doctors know how to do the CT enterography because it's still a "newer" procedure. I did not know this! I guess I was lucky both times when I had CT scans they did it this way without having to do it through a tube down the nose!

Either way...I really hope your CT scna gives you more information than what you've been given so far. Keep us posted when that might be!
 
the string is a suture that has not dissolved yet. She said it will in time so nothing to worry about.
She also agrees that something else must be going on other than endometriosis. I made the decision to hold off on Lupron as it sounds worse than the actual disease itself. As far as the biopsies go, she was totally confused by what my GI was talking about. She said she has no idea where to even take the biopsies from since crohn's is inside the bowel where as endo is outside the bowel. She said she had not received anything from their office about anything at all. She also did not communicate with them that my bowels looked "normal" as the GI nurse said. She said that she was looking for endometriosis and Crohn's is not her area - she wouldn't know what to look for. She did say that she didn't notice anything with my bowels but she only saw the outside of them.

The CT entercolysis is apparently the gold star test for detecting crohns. I am still a little confused as to why the tube but at this point Im afraid to ask or argue in case he gets upset again and says I "just have IBS" At this point I will do anything to figure out what is going on. I was pretty good in terms of pain while I wasn't eating but now that I am back eating, I am feeling the full feeling in my right pelvic area again. Uncomfortable for sure. I am wondering if that feeling is inflammation?? I also have swelling of my hands and legs and feet from time to time. Not sure what that is about - and my hands are what bother me most. Doesn't hurt, just tight.

I am going to be re-working my resume this week-end and am also going to apply to get back in to university to finish the last 2 courses for my degrees (Im doing a combined degree). I am also going to apply for my Masters as well. Im a little hesitant as Im not sure how my health will affect everything but I cant stand just sitting around. Work has a huge impact on my self-esteem and since the conference, I have realized how much I need to be doing something. I am also going to start running again. I know running was a huge help for me as I have a very stressful career. I no longer have the same type of release...and I just felt better all around. Natural endorphins are my favourite :)
Im going running tonight and I met someone at the conference who is interested in hiring me. They seemed flexible in terms of hiring me for relief staff at first to see how my health fits in to all of this. I would be lucky to have such understanding employers!

Anyhow - there is the update on me. Things are moving along at a snails pace but moving none-the less.
 
That must be one bad ass suture! Still around?

As for the lack of communication and mis communication between Dr's and surgeon...I'm for lack of a better term...gobsmacked.

I can only hope things improve with the 'scope' and I've never heard of a 'gold standard' of crohns diagnosis, but hey. If that's what it takes to get you help...go for it!

On the employer and education front...whoooop!!! You are doing right IMO by moving forward instead of standing still. It WILL make a difference to you to be progressing in your life rather than waiting.

Hugs to you...and belly scratches to Keona! She'll be thrilled to be running with you!!!
:rosette2:
Misty
 
Thanks Misty - I have already asked Keona if she wants to go for a run and I got that familiar head tilt and bulging eyes. I am glad she remembers what that word means :) She is so very excited - I think she started without me :)

I think the problem lies with the nurses at the office and the reception. They were really rude to me and seemed disgusted that I dare ask about my results. They aren't very pleasant on the phone but in person they are the nicest (keep in mind I have an advocate with me in person). As far as OBGYN she told me if I change my mind about treatment, I would need to let her know before a years time - after that I would need a new referral to her and the wait.. She was very helpful in ruling out that the endo wasn't the issue with my pelvic area. She also doesn't think it has anything to do with my fatigue.

I agree with you Misty - stagnation is not my thing.
 
:ymad: to those receptionists!!

Lower right quadrant pain is classic of crohn's. You ARE going to get help, and soon. Darlin...you deserve help.

As for Keona...I'll bet she is helping you to heal. And if you find you cant run but fast walk to begin with, I'll bet she is just fine with that too.

:hug:
Misty
 
Wendy - Sounds like you had a productive appointment with your GI. At least she was able to explain why no biopsies were taken and give you some peace of mind on some of the other gray areas you had involving what could be causing your abdo pain and fatigue. That is encouraging! I hope this CT goes well. I think it's a step in the right direction since up until this point MRIs haven't been able to detect anything.

Also glad to hear you aren't letting things keep you from doing things you want to din in your life! Productivity, as long as it's not too stressful, gives us confidence and a positive self image--both good things to feeling healthier! :)
 
Man oh man Wendy, where does it all end! Now you even have foreign bodies poking out of you! :eek2:

At least the OBGYN sounds like she knows what she's on about and is willing to give you answers. Godammit mate, some of the staff that in those doctors offices are so far up themselves they are just about turning inside out, aren't they?

I'd say the contrast they use with that particular scan is administered via a tube because you can't ingest it orally, if you know what I mean.

As hard as it is I think you are right too to move on with your studies. I honestly think it was the one outstanding thing that got Matt by over the last six months. Matt is at high school and university and although he ended up dropping back to one unit this semester I truly do believe it was the normality of school and uni that kept him going. Good luck hun.

YAY! I'm so happy that you and Keona will be having some fun together...:):):)

Much love, :Karl:
Dusty. xxxxxxxx
 
it was the MRI's that detected the strictures and thickening of the bowel wall. Im not sure what else can cause that so if anyone else has some ideas, please chime in. I was told that the images arent as clear as they would like so want something more nuanced. The CT entrocrolysis does detect abcesses, fissures, fistuals, skip lesions, etc..etc... so I am willing to get a blast of radiation for some resolve.

Misty - my dog makes me laugh when I didnt know I had it in me anymore. She is a great dog and as long as she is outdoors...she is happy as can be.

Thanks dusty - I think it is a power and control thing the nurses have going on.

I am looking forward to re-applying (well, not the applying part but being back in school part). I really enjoy lectures (the papers I can do without) but love the lectures.

Thanks everyone.. when I hear again from the GI or GP front, I will let you know!!

Wendy
 
Surely the OBGYN would have seen any appearance of fistulas. I would think at the very least, you can rule that out!! I know she wouldn't have been able to see what's going on inside your intestines so I hope this CT gives you the answers you've been looking for,...forever!!

Meanwhile, bully for you!! Glad you have that determination Wendy! I've always seen that in you:)!!
 
Hi Joan,

yes - the blood work would have ruled that out. I remember them testing for that. Also, if you google "thickening of the bowel wall" everything that comes up is IBD or something a little more sinister - so considering I think I have a lot of all the symptoms a lot of people on here have, I really do believe that is the problem. Unless someone can give me another reason as to what causes strictures and thickening of the bowel wall... When I went on the liquid diet, I really did feel a lot better (apart from the hunger and constipation from the milk). Once I started eating again, it felt pretty good until just recently... now I have the pain in the right side and fullness and the pain in the left upper where the jejunem is...where the strictures were found. The pain where the jejunem is is only occasional - the right side, has been every day.
 
Hi Wendy :)

I've been following this thread and girl I don't know how you do it!
You're a strong person !
I sincerely hope you get some definite answers soon...you deserve some peace! :rosette2:
 
Thank-you Crohn's Mom.. that is nice of you to say

I do it because I have really great supportive people. Here and the advocates off-line :)
 
Just catching up here again Wendy.
Hoping that you get the answers you deserve with the CT scan. I'm so sorry that this is still dragging out for you.
Hang on in there xx
 
Hey Andrea

I got a date today for Aug 16. Have to be there for 7:45 am. Then will be taken to fluoroscopy for insertion of a nasel tube and my scan will take place at 9:00. Says to plan a stay in hospital for approx 2 hours. Because I am getting sedation for test, have to have someone drive me home...

A radiologist will insert a small tube into my small bowel through my nose or mouth. A mild sedation can be given to help me with that. Fluid will be placed into the tube to fill my small bowel once the tube is in the proper place. I will be taken to CT scan room where more fluid may be needed to be put into bowel through the tube. A medication called buscopan will be given in the IV to prevent bowel from moving during CT scan.
x-ray dye will be injected through the IV during CT scan when the pictures are taken. After test, radiologist will remove the tube and I will be monitored for 20 min. You can leave the department with the person that came with you.

Do not eat after midnight. May have clear fluids (water, AJ, black tea or coffee - NO MILK) if necessary.
You will need to have someone take you home after the test (wow...they really get that across..)

Seems straight forward enough.
Onward and upward as Dusty would say.

Hope you're doing well Andrea. When can I get a copy of that amazing thesis of yours?

:D

Wendy
 
a little over a month and 1/2. I would insist however I think about the people who are needing them and are likely worse off than me. I am in no hurry to have this procedure done - but knowing it is scheduled makes me think they are listening.
No donnatal for me...
 
I guess after all you've been through...what's another 3 months!?

How's Spring coming along up there Wendy? I hope you stay well enough to enjoy the summer! I'm looking forward to the pics!:)
 
I just wanted to drop in and say, "Hello Wendy!" I hope you are feeling better. I have Crohn's and one of my sisters has endometriosis. Our symptoms can be surprisingly similar. She was told that it wasn't uncommon for surgeons to find endometrial adhesions in the colon. Weird! Hopefully, your doctor will be able to identify the source of pain soon.
 
Hey Wendy,

As long as you have a date hun...it's the start of a plan and something to work towards, something concrete. And yes!......

onward-and-upward.JPG


Much love mate, :Karl:
Dusty. xxxxxxxx
 
Ha Dusty...lol thanks for the visual :)
Thanks Andi and Marisa....Thanks Dex...the pics are few and far between but at least there are a few :)
How am I feeling??
Hmm..not much has changed to be honest. I am in pain the last 2 days especially with stomach cramps and back pain and upper leg pain. It is sort of gnawing... very crampy...and really queasy. I noticed going on a liquid diet did help ..even for about a week after eating again, then it slowly went back to the same. I have thought about doing that again.

I have a GI appointment on thursday. Not sure why to be honest considering my test wasn't ordered when it should have been (the appointment was to go over the ct entercolysis that they didn't schedule.). Not sure if I mentioned that the main advocate I had is leaving... actually has already left. Her last day was friday. She got a new job doing something completely different. I am thinking about going alone but I might be able to get someone else. I am fairly angry so I am sort of concerned I might say something I will regret...or that they will say something to make me angrier. It helps to have someone there...especially when they say they didnt say something they did. Doctors suck... let me rephrase "my" doctors suck....

I still haven't been back to my GP since the HIV test. I am assuming I don't have it as the health department would have been calling me and so would my doctors office. I didn't go because it seemed like a waste of time... sort of never ending.....

oh..i am completely healed from surgery...the belly button string disappeared .. finally :)
 
Last edited:
Thanks for the update mate...:hug:

The liquid diet sounds like it might be a try again, may give you some relief in the lead up to the test, ay.

If it's possible I would take someone, for the very reasons you said. I guess you could utilise the appointment to discuss how are feeling now and ask what they are likely to do for you when the test results do come in, either way.

Oh yeah, I don't think you'd be left guessing if it was positive!

Great to hear you have healed and your hanger on has vacated the room! YAY!

Much love hun, :Karl:
Dusty. xxxxxxxx
 
It is 5 am and havent had sleep. Havent taken anything for pain yet but very close to. I have plans today that I really dont want to miss... so I dont want to be in pain nor do I want to be drugged up for it either.

It is very crampy... both sides... and now across the front. I have been to the washroom... well, lets just say I have lost count... very watery and there really isnt anything left, I dont think....
this is not my period but feels like it. I know my cycle well and this isnt it.... although Andi is right in how they feel remarkably the same ... it is different though.

I just downloaded the wellness app for android. It is also available for iphone. It is called GI monitor. just keeps track of your pain, stress levels..how many times you have been to the washroom...yadda yadda....

https://market.android.com/details?id=com.wellapps.gimonitor
(also available for iphone)

going to go take a dilaudid now...

all I ate today was some soup and a few popsicles... maybe the sugar???? Im tired of always trying to guess what is wrong b/c I NEVER know.....
:ybatty:
 
Oh hunney I hope the medication helps with the pain. :(

I know what you mean with the guessing all the time, I went through that with Sarah and it's enough to drive ya mad ay?

Do you take anything regularly for pain?

Thinking of you sweetie, :hug:
Dusty. xxxxxxxx
 
Hi Wendy- catching up here again.
I'm so sorry about this **** is continuing for you. I do hope that someone soon gets you the help that you so deserve!
Well Apps- hahah, was my best mate until it told me that I had to start entering data. Just wanted to write f'ing crap day, but it wasn't having it!! lol

Hang in there hun- that pain you're describing is what I've had recently. Feels like period cramp, but they left home in Jan, so no bloody idea!

Thinking of you..sending a big hug xxx
 
I am supposed to be taking a low dose of dilaudid for pain every 4 hours whether I have pain or not. The interns said it is good to build up a baseline... which made sense and worked until it started to cause other problems such as the chronic constipation.... then I stopped after surgery for awhile and the liquid diet helped. There is a correlation to food.. I am sure of it, but I cant figure out what...????? I was doing pretty good but it started to gradually get worse when I started eating again (took about a week of eating). The OBGYN said my next period would be very painful (they ALWAYS are!!) but the two after surgery were again so excruciating that if I could have gotten to the phone I would have called an ambulance. The last time I took 4 dialudid and then half a perc when it didnt help then I threw up everywhere and then took another 2 dialudid... I eventually passed out basically ... I know it sounds like a lot of pain meds but I threw it up not long after taking the perc and I could taste it so I know it didnt get in my blood stream. There has to be an end to this.. and a happy one... this is crazy!
 
Wendy, I'm so sorry that you're having to go through this, and to be in so much pain. Right, you may not like this, but is a trip to the ER an option? Maybe they can put in an IV and get something into you. Passing out in pain is really not good...
Really am worried bout you back here..xxxx
 
Accch, Wendy! Can you catch a break? If you can't find someone to go to the GI with you, I still think you need to record your conversation and write down your concerns beforehand so you don't get flustered.
 
Man, it's frustrating to read about all that you are still going through. I really can't add much more to what everyone else has already said.

What kind of soup are you eating? For me, I noticed, anything that wasn't made from scratch tended to upset my stomach when I first got out of the hospital. So, my mom made homemade chicken soup that I basically ate the whole time. Or tomato soup was okay, but a bit acidic if I ate too much. :(

I hope your GP can do something for you. Yes, please take someone if it's possible. Given your doctor's track record, I don't trust them at all to treat you responsibly without another person. How sad. :(
 
Wendy this is not on. You poor thing! Really need to get in the the GI ASAP, you cant keep going on like this.

I wish with all my heart I could make it better for you.
:hug:
Misty
 
Aw Wendy this isn't fair!
Don't think you'll hang on til Thursday by the sounds of it. What if you have an obstruction? Can you go to A&E?
We're all rooting for ya luv, let us know how you are
Take care
xxxxxxxx
 
Oh you poor dear. I hope things either improve for you soon or they map out a new course for you. You shouldn't be so uncomfortable. Thinking of you.
 
Thanks everyone. I am feeling better after I took the dilaudid. I have been not too bad today but night time seems to be worse for some reason. I am doing alright tonight though.. thanks to dilaudid.
It really does feel like the intense period pain I get with the endometriosis but the OBGYN said it isnt endo... it is likely Crohns (although Crohns is not her area). Im okay though.. in no pain right now except for some dull cramping in my back and across my stomach. When I described the intense pain... passing out ... that was endometriosis... it was during my period but I am really confused as to what is what ?!?! It has been a few weeks since that experience. I am going to take everyones suggestions and ask someone to go with me. I did find a really good link to explain the procedure I am having done so I will post it in the general discussion under ct-enterocolysis. Im not looking forward to the test but am completely willing to have it done just for answers. Cant be any worse than I have already experienced anyhow.

Marisa, ya.... I have been eating processed soup... which I dont really like but it is all I have right now. I cant have tomatoes cause of the gerd. I am going to start the liquid diet (oh.. heh... guess I already have..lol)... I am doing MUCH better! I am curious to know what the HECK is going on though.... no offense Welsh but it sort of scares me to know you are relating to me..ha... after everything you are going though ;) If after all this.. if my test (CT) comes back with something such as Crohn's... I am going to write a complaint. not sure to whom or what good it will do but I am still flabbergasted that my OBGYN had absolutely no idea that the GI wanted biopsies....and then they tried to tell me that they didnt say that. I HAD SOMEONE WITH ME!!!!
Since I started the dilaudid again, I am cautious about the whole constipation situation again.
I may need to chat with you a bit Joan about the difference in pain with Crohns and endo.... they both feel very much the same to me except with my period... the pain is off the charts...

.. just to reiterate though.. the dilaudid is working so I am pretty much pain free.
thanks again everyone....
 
So good the hear the pain med is working, now all we have to do is ward off the constipation...:voodoo:

Thinking of you mate. Much love, :Karl:
Dusty. xxxxxxxx
 
I'm glad the dilaudid is working too Wendy! But to me it just reinforces the doctors' negligence!! You can't keep going this way! I hope the CT Ent. will provide some clear, irrefutable evidence of whatever is causing all this pain! And then, I hope you receive some targeted treatment that helps instead of just masking the pain!!
 
Very relieved to hear you aren't in pain right now! Hopefully you can find a happy medium between being pain free and not constipated!

If you want my mom's chicken soup recipe, let me know. It's super easy. Liquid diets are really hard. I always felt hungry. :) The protein drinks were the only thing that really helped me not feel like I was completely starving, LOL!

Really hoping and praying this next test will reveal some answers for you so you can start kicking people's butts! ;)
 
Glad to hear the pain meds working, but very sorry you need them! I agree, its Dr's negligence!

I'm really hoping you get some answers, and SOON!!!

Misty
 
hey Joan,

that was what my surgery was for - to remove the implants. They thought it would be a lot worse than it was as they only found two and removed them. The OBGYN said my next period would be alot more painful - it was painful but in hindsight...so were the ones before. Im not sure if it was more painful or just took over from the last one..where I left off before the surgery pain-wise (if that makes sense). The pain monthly DOES get worse monthly but since it is so painful to begin with it is difficult to scale it after awhile. I think once you hit 10 on the pain scale... everything is a 10 or just simply "off the charts". With endometriosis, luckily for me it is only just during the beginning of my period - so I am in agony for about 24 hours and then the rest of the month it is clear sailing - menstrually speaking. What I think is crohns feels just the same .. and as you described exactly - pain around the stomach, back, legs, etc. It isnt AS painful as that 24 hours but that was how it all started out. Aug really does seem like a long time away now that I think about it. I will pm you.

Dex - it does feel like the GI doesnt give a rats behind how I am feeling. I have to ask today for someone to go with me so I will see what comes of that. Not sure if I can get someone 3 days before my appointment - forgot I had the appointment!

Thanks Marisa - I would like the soup recipe! I love soup!!
 
so - i was wrong and found the appointment card the day of my appointment. It isnt until the 20th - and I have someone going with me.

One question... I am pretty much doubled over in pain since about 5:00. I just took 1/4 of a percocette. It hurts in certain postiions..like some of the ways I sit, stand and with walking and urinating. Anyone know what that is about? no vomiting, no nausea, no fever... just sharp pain at about an 8. My groin area, hip..pelvic area...
 
What are you going to do Wendy???

If it was Matt or Sarah I would be taking them to casualty but I know the problems you have had going there. :(

Oh mate, I don't know for sure. It just sounds so much like Matt's pain and symptoms with his abscess.

Since it hurts to pee do you think you may have a urinary tract infection? A UTI can also cause pain where you are describing.

Have you recently been on antibiotics?

Sending you loads of love and hugs hun...:hug::hug::hug:
Dusty. xxxxxxxx
 
no I haven't needed any antibiotics for a very LONG time. I ate some rice with some sauce and had a coffee today ..iced tea but thats about it. Just came on suddenly and my friend thought it was my appendix. It is the same pain (location) that I have had the last 4 years. Is 'casualty' = ER? I keep thinking all they're going to do for me is give me a bag of IV and pain killers and then send me home. I have pain killers here. I ran out of the dilaudid but took a 1/4 of a 5mg/325 mg acetaminophen. Hurts to stand up and sit down ..

I wondered about the UTI - would the pain be in the same location .. for the last 4 years? It is the same spot but it changes in intensity... burns or today a sharp burning
 
The pain would be in a similar location to what you have already experienced. I guess you could have chronic cystitis but that would be a long shot I reckon. They would have done a urine test each time you went to the ER wouldn't they?

One thing to bear in mind though Wendy is you may develop something else but be so use to the pain you already have that you don't realise it is happening. God, does that even make sense?? :lol:
What I mean is don't think you may not have a UTI because of your existing symptoms.

Dusty. xxx
 
i have only walked in to ER once in the last couple of years - for this. I was admitted a long time ago. it is a little relieved with the perc but still hurts in sitting. I have heard of someone thinking they had an appendix issue and it was a UTI. I dont ever recall having one ... all I know it is the same pain as before only magnified.

That is the problem with all of this.. i still don't know what it is......
The last time I was in ER they took a urine sample. Same when I had surgery - how long does it take to get a UTI? does it just hit you?? hmm... i am peeing a lot/urgency
 
I know Wendy, when you don't have answers to begin with what the hell do you use as reference!

The pain you have had all along is as I said very similar to Matt's. I don't think all of his was due to an abscess either but from the inflammation and swelling of the bowel pressing against surrounding structures, including his bladder and ureter.

The pain on voiding, frequency and urgency is sounding very much like a UTI. Yes, they generally do just hit you.

Dusty. xxx
 
the way I can describe it is as as someone took a wiry bottle brush to my intestines.. or tubes... whatever they may be.. is the uretha on the left side as well? It is all on the right side except every now and then I get a sharp pain on the left - few and far between. Had to laugh at Welshy - my app doesnt really apply at the moment...lol
 
Oh, ****, Wendy I am just catching up on this now and I am so sorry you are going thru all this!!!

When it doubt, do what Dusty says! Maybe it is a UTI - I have heard of this just sneaking up all of a sudden and people being doubled over out of nowhere. Any kind of massive pain - I always opt for the ER. Better safe than sorry and if it is a UTI, hopefully they can dx it right away....

Good luck - keep us posted! xo -Ames
 
i have been good since I took that piece of pill. Been cleaning actually..heh... guess it worked. I still feel it but its only just really annoying. I am going to call the new advocate person. She has been working on the new doctor situation. I just haven't been calling back. I get really tired of the word Crohn's and intestines and flare and you know...all the medical jargon?!? I use to want to work in ER ICU... not sure I want to anymore...
just has changed the course of my life you know?!?
which I suppose could be a positive thing.....
 
I just wanted to say, "Hi." I can relate. I used to want to be a nurse. After being a patient and spending time in the hospital, I changed my mind. I hope you are doing well.
 
I understand what you are saying Wendy.

:hang: in there buddy.

Thinking of you hun, :hug:
Dusty. xxxxxxxx
 
Sheesh....more complications! :( I'm just catching up on this now too. Sorry to hear there is something else. I'm hoping it's not a UTI or anything else too serious. It could be as Dusty said, where there could be inflammation that is pushing things around and making things more uncomfortable. My pain wasn't as serious as yours sounds, but pre diagnosis and even a few months after I had these weird pulling sensation in my pelvic area. It was like a pulling, sharp pain. It did eventually go away, but I wondered it could have been due to the fact that I had inflammation and it was mashing up all my inner girlie bits.

I hope it doesn't get any worse!

P.S. How did the soup turn out?? :)
 
HEy Marisa,

My soup was fantastic!! Thanks for the recipe!! I ate it all without any difficulties and even had it with rice.

I just returned from my GI and still frustrated as ever. They are only now acknowledging that I might be a tad frustrated (by saying "I can understand why you are so frustrated")

they gave me a new med for my reflux and are concerned with the fact that the last one didnt work that well. This time they gave me a sample box and then if it works to call them and they will call in a script. It is new and called Dexilant 60 mg. or dexlansoprazole.

They also are going to book the tube down the nose for the day to measure my reflux. I carry a box around on my waist. I get to go home with it in/on.

They also booked a colonoscopy - which pissed me off because I asked the last time if I could have one and he said it wouldnt be any use since my issues are in my jejunem and illeum. He TOLD ME that it wouldnt reach. Now they want to ?? Anyhow, I have to take the dulcolax and pico-salax. (4 sachets).

they also want me to have a breath test done to measure my bacteria in my stomach. It is called a breath hydrogen test (for carbohydrate intolerance). I might have small bacteria overgrowth. Ummm... you think??? I have only needed about 6 bottles of nystatin and a pill form to fix oral thrush.

They want me to call the CT place to see if they can get me in sooner - on a cancellation list. So, I will be doing that.

I guess nothing much is new in terms of how they will help me. An advocate did go with me and she agrees that I need some consistency with even the advocates going because she couldnt say to me today "yes, they did say last time that the colonoscopy wouldnt reach" She believes me but she wasnt there, it was a different one.

The GI thinks I have more than one thing going on. That I have a motility issue...

I dont know...just really frustrated.... my next appointment with him is Aug 2012 (unless the tests find something).
 
here is yet another prime example of why I get so pissed off. I just called the CT entercolysis department and asked about getting on their cancellation list. They dont have a cancellation list and she said she is very suprised the doctor asked me to call (the nurse did actually) because in order for them to change the appointment date, the doctor (not the nurse) needs to call and talk to the radiologist (Dr. Rebello).... when I called to tell them that the reception cut me off and said yes we know that ... well then why the *&$^ are you getting me to call and ask to be put on a cancellation list for then? I find this all to be a lot of BS..

...how am I supposed to trust these people? I have to let these people stick something up my ass after hearing they "forgot" ... the nurse told me that she has been calling to get me in sooner but I dont see how that can be when I was just told that I specifically need to get the GI to ask... this is all just BS...
 
Glad the soup turned out great!! Yay!

Sheesh....they've got a whole gamut of tests lined up for you. Though, as you said, nothing really new! You've asked for many of these tests and suspected many things they're testing for. I can only say, I hope having concrete results MIGHT get it through their thick skulls that there are things going on with you that must be treated. I'm hoping, evne if your disease is located in the jejunum/ileum, a colonoscopy would be beneficial in seeing if it has spread anywhere else.

I still find it weird that you don't see GIs on a more regular basis where you are. I see mine every 3 months, and that is with a stable condition! I don't know how they expect for you to get continuity of care with such sparse appointments with your GI. No wonder they can never remember anything they've told you!!

Sheesh...really hoping all your tests get scheduled quickly and you get some results out of all of it!
 
I am feeling a little bit better than when I was earlier but I have broken up the percs and have been taking pieces of them. I feel the pain in my right side (hip /groin) all the time and sometimes I have pain in my left side. Back bothers me and my hands still have a rash. Im okay... I could be better thats for sure but I could also be worse so I dont like to complain in case I jynx myself. lol.... (im not superstitious either!) Im more really very frustrated with all the inconsistencies and out right lack of accountability and the amount of time this is taking. I think I have been more than patient with them and probably THE most cooperative patient ever.... even the MRI nurse kept saying I was a good patient after she had to stick me 6 times to get an IV... I think it is crazy... and then for the nurse today to say that it could be some type of rare cancer freaked me out... in fact, Im not even taking that seriously b/c they have been so messed up with their info....

they are still saying it is probably IBS now b/c my blood comes back normal. My MRI's dont but that doesnt seem to matter.... just makes me really frustrated esp. when they tell me to reduce my stress.... crazy....
i dont know when my appointments are as they have to call and give me the dates so I shall see how much longer I have to wait.

I know eh Marisa? over a year for my next appointment.... thats messed up.
 
Wow. You are feeling poorly enough to be seen alot more than you are! And the crap you have had to go thru is beyond belief. Do you own your own home, or can you move perhaps closer to better treatment and Dr's?
:ghug:
 
no I rent and I already live in a big city with 4 large hospitals. Unfortunately, it takes a year wait list to get in to see a GI...there are a shortage of GI's here. I can guarentee though that if they do find something and it is in need of immediate medial atention i.e: surgery... I dont know if I would be comfortable having my doc and nurses preform that on me...lol.... I am only sticking with them b/c I dont have any other option... I cant even find a family doctor that is willing to see new patients.
 
Hiya Wendy

so sorry you're still feeling like this, going round in circles, going no where fast!
You know about Jessica? Acute appendicitis, peritonitis, surgery etc, she's doing ok.
But the surgeon mentioned chronic appendicitis aka grumbling appendicitis.
read about it here
http://www.ehow.com/about_5332905_symptoms-grumbling-appendix.html

he said it may have started out as chronic, mild but niggly symptoms. Then escalated to acute within a week.
Jess' symptoms included weeing a lot and she said it was like pissing glass.
When we got to A&E the first thing they checked for was an UTI, her nitrates were positive, and I told them that she had had 4 water infections in the last year. She was in a wheelchair on the way to an ultra sound scan when she started vomiting green bile. They whisked her back to the bay and booked her for surgery that night with suspected acute appendicitis. Turned out it ruptured and peritonitis had set in.
Wendy, get to A&E and tell them you suspect appendicitis, they will do an emergency CT scan which will show up inflammation in this area. The fact that you've got a water issue is ringing alarm bells with me.
Jessica has had water infections on and off for a year, the surgeon said this is classic appendicitis.
Dusty will be able to tell you this too, if you can get someone to press down on that area and it only hurts when they let go, then it's your appendix. It's the retracting back of the peritoneum that hurts. Also if your lying down and it hurts to stretch your legs out, that's classic appendicitis too.
please take care and get checked out
xxxxxxxxxx
 
Hi Joan,

Yes, I followed about Jessica.. and so glad she is better. I thought it was funny how she was sitting up eating when you arrived saying hi and feeling better. I think I felt the relief for you :)

I read the link and they said that it wasn't my appendix (my GP) and when I went to ER the last time they said they didn't think it was either and then concentrated on the fact that I have thickening of the bowel wall in the ileum and the 2 strictures of the jejunum. I do get nautious quite often... just in waves and I cant really connect it to anything, I thought it was the pain meds but I tried to go awhile without them and still got queasy. I only throw up (violently I might add) during my period.

I asked the nurse today that if they think I have IBS then what is causing the thickening and strictures. they couldnt answer except for asking if I have had numerous surgeries. I have had 2 surgical scopes, but that is just little incisions...so..no... that would not cause thickening of the bowel, etc. They cant explain it. then he said that he is not sure why it all gets worse with my periods... I just posted a video link in a thread and it explains how periods DO make it worse even if you dont have endometriosis. I will do some more research and see if I can relate to it and then might go to the walk in clinic. I intentionally didnt go back to the GP for pain meds so that I could go to ER the next time I have pain. A little scary not to have the immediate relief but i am at a loss and really do not feel listened to. I think if a doctor does not know then they have a responsibility to send me to someone else. this hasnt happened... isnt there diagnostic specialists?? I mean 4 years is a very long time to wonder and go through rigours testing...especially when you have to wait a year in between appointments... that is just insane to me..

thanks Joan.. I am going to look in to it.
Wendy
 
Yes please do Wendy

On her surgical notes it mentioned diverticulitis, inflamed bladder and inflamed bowel loops. I feel a bit paranoid about that! So gonna follow it up with GP for tests.
These symptoms are classic peritonitis, everything in there was inflamed. Not saying you've got that, it's quite serious, surgery is required immediately.
But if you do research the appendix, a lot of your symptoms tally?
Good luck Wendy, hope you get something sorted, and get to the walk in or A&E if you start vomiting, promise me?
xxx
 
I promise :) I only vomit during my period ..and projectile...lol... the GI thinks there is more than one thing going on (aside from endo.) I wish he would stop relying so much on the bloodwork though. He keeps bringing that up how it comes back normal. Perhaps...but my MRI's are not. Also, if I had appendix or a UTI, wouldnt my markers also be up then?

I would be nervous about your daughters intestines as well after what they found. I hope it doesn't turn into anything. Are they doing anything for her diverticulitis?
 
Oh man Wendy, when the hell is someone going to step up to the plate and commit to something!

I'm so frustrated for you hun. As you know, anatomical changes do not occur in the bowel in IBS. I don't know if we just got lucky or what with Matt. Yeah I know his sister has CD but even so there is still a larger chance he may not have had it. His GP said the minute he felt the mass, I think he has CD, the radiologist took one look at the ultrasound, thickening of the terminal, he said...I think he has Crohns, the GI diagnosed him on the spot and on it goes. My point being through all this he has no conclusive evidence of Crohns. I was just reading the surgeons letter from his review last month and it said...has the behaviour of Crohns but not supported by pathology.

I would hate to think where Matt would be now if the docs danced around the edges and didn't say...the pathology may say otherwise but it is Crohns.

So many of your symptoms sound like Matt, yes his presented more acutely, but that would only be because he has fistulising disease whereas yours sounds like it is stricturing and therefore has the potential to grumble away for years. They ruled out a grumbling appendix early on with him too. Also any reproductive issues, as in a torsion of the testes, were ruled out. Your markers may not necessarily be up with a UTI but should be with appendix.

Perhaps I should give you a copy of Sarah's results and you can show them how useful normal bloods and CT scans were in her diagnosis.

It breaks my heart to read about the hoops you are being put through. God I hope you get some solid answers and lasting relief very, very soon Wendy.

Much love, :Karl:
Dusty. xxxxxxxx
 
Just want you to know, I'm still following your saga W! And amen to Dusty there^^! I know you're going to have bad days until someone gives you a solid dx and treatment, I just hope your good days outweigh them! Good luck!

I really like your Spring pics on FB, btw:)
 
Thanks Dusty and Dex.

Wow... seriously Dusty...after all that they dont think Matt has CD? Do they have another theory as to what he does have? It certainly sounded like he had CD. I'd be wanting an answer as well... and to know if that was a one time thing or if there was a possibility of it happening again???

I have to be careful because after reading all of the threads I have learned how tricky this disease can be. I can really relate to what everyone is saying so it makes me wonder if this is what I have. I may not.. but it is definitley something chronic and the fact that I have severe GERD (so it is my entire digestive system) also makes me wonder...and how my brother has it ..and use to smoke for many many years (I actually quit b/c of this).

Anyhow. I have my motility test booked for the 28th. This is the ph testing where I have to have a tube down my nose for the day, go home and have it monitored on a box. You are supposed to act as normal as possible doing the normal daily things and eating regularly. All they told me was no perfume during that 24 hours and continue taking my meds. I havent heard about the other ones. The only reason why I got this test so quickly was there was a cancellation. This is for GERD not testing for crohns but at least I am getting somewhere. I just wish it were with my stomach.

Thans for listening everyone. I appreciate it.
And Dex, thanks :) I went camping overnight in a gorgeous cabin - which is where I took the pictures. It is beautiful up there. I love camping so I have 3 trips planned for this summer. I am also applying for 2 jobs. One is relief work so I can pick and choose which positions I take and the other is full time. I have someone to take Keona if I work alot. I just need to start doing something as I am finding it is affecting my mood. I use to get a lot of my self esteem through my work.... without it, it just disappears. I am on A LOT of committees to fill my time, and they are all for good causes so I am doing something.

as Dusty would say...onward and upwards :)
 
Wendy, I am happy you are keeping yourself busy. I certainly understand that you need to keep yourself occupied to keep your self esteem up. Giving to others makes a world of difference in feeling better about yourself.

I have been following your lack of progress with a diagnosis, as you know. I can tell you that even after all Ive been thru, I still only got a 'well, we're 95% sure it crohns, not 100%, because we have to be careful" I'm 50 years old been sick off and on since 1997!!! And this I hear after all this time? Oi veh! :ybatty: This kind of thing isnt unusual as by now you've realized.

For your sake, I want you to at least be treated for your symtoms! You've been thru enough already! :ymad:

:hug:
 
I've only really caught up with this thread, Wendy, and noticed a lot of similarities in our symptoms and diagnosis ( except that yours is not conclusive yet, and I'm sorry about that :-( )
I had, like you, grumbling appendix ruled out, UTI sometimes tested positive for and treated with antibiotics, sometimes still had all the symptoms but no positive tests. I have thickening in the terminal ileum, 'cobblestoning' and an abscess with a fistula to the bladder. I have mainly pain in the right side, occasionally on the left and lower back and joint pain. Since all this flared up, my urine has been kind of cloudy and fizzy ( bubbly ) even when I tested negative for UTI. Are you getting anything like that at all? This is apparently gas from the bowel going into the bladder.
Hope I haven't scared you too much - it's not my intention. I really think you should push for a CT scan if you can, because the abscess and fistula did not show up in either an ultrasound or a Barium FT - I don't know if they would with a scope?
Take care and I really hope you get some definitive answers very soon :hug:
 
Hey Wendy,

The biopsies always come back negative so the pathology always states - no conclusive evidence of Crohns disease. However all the docs he has seen in the last 6 months agree that he does in fact have Crohns disease regardless of what the pathology says. To be honest, when he had the ultrasound and the radiologist said he had thickening of the terminal ileum I knew he had Crohns, I never for a second thought it would or could be anything else.

I hear you about work hun...:hug:...good luck!

Yes! Onward and Upward. Thinking of you mate...:wub:
Dusty. xxxxxxxx
 
Last edited:
I forgot to mention that the clinical nurse also told me it was okay for me to take advil during my periods b/c the narcotics were causing constipation. I dont know what to think anymore... I get a lot of conflicting information.


...and grumbletum.... you havent scared me at all... :)
 
Hi Wendy! I'm just checking in with you. I hate conflicting information. When I had Shingles a few years ago, my doctor said it was okay for me to take Naproxin. Oh boy! That caused my Crohn's to go to all to heck! I will not touch Naproxin now. My advice would be to be very careful with pain meds.
 
To be honest Wendy I don't think it's worth the risk. If you have anything Crohns like going on it will wreak havoc with your system.

Dusty. xxx
 
when she asked me what meds I was on I told her I was on dilaudid and now I am only taking percs from time to time (i have left over ones from surgery and have been breaking them up and taking little pieces just to take the edge off). BUT I told her I am running out and when I get my period I have to take a much much larger dose. I explained I am not taking the monthly injections (possibly for now) b/c the side effects might be worse than the disease that I have. I dont have severe endometriosis... I only had two implants. I told her it didnt seem worth it - my OBGYN supported my decision, FOR NOW, because implants usually come back eventually and deposit somewhere else b/c the underlying problem hasnt and can not be fixed... unless they remove my girlie bits. (which I am not doing just yet either). I am only in severe pain for 24/48 hours - it doesn't warrant having the injections and it affecting ALL 30/31 days when I can just take something for the pain.

anyhow... just really confused and a little frightened to be honest that my health is in these peoples hands. She told me she was going to ask the GI if it was okay for me to take the advil (and I was taking a lot with the pain but for about 1 or 2 days only (4 every 4 hours) she told me it was a lot. I am not going to take advil and when I do get the pain this month.. I will be going to the hospital with it b/c I dont have any other option. Unless I go to the doctors first. I have to be honest. All of this Crohns stuff really reminds me of when I was telling the doctors I have endometriosis... they kept saying I didnt that it was just painful periods... yadda yadda... now look at me...lol... it is the same thing.. I had a friend with endometriosis and I asked her about it and thought it sounded an awful lot like what I experienced.... I even bought a few books and was sure I had it.. its the same thing with the other pain.. thinking it is Crohns. All of my reports are coming back from the radiologist "non-definitive crohns"...yet the GI and nurse say IBS or something more sinister. I cant believe how long this has dragged on for...

lol..sorry for the rant... :) I think since I can relate to what everyone here is saying more than what the doctors ... I will listen to you guys .. sad isn't it that i cant listen to health care professionals advice???
 
There is hardly EVER a 100% diagnosis of Crohns. I genuinely hope that someday you can see another GI!!
:ghug:
 
Hi Wendy..
I have been following this thread forever but never quite know what to say.
Just know I am thinking of you and feel so bad for everything you are going through..
Your poor head must be spinning constantly!

I wish you the best of luck!
hugs,
~T~
 
If there wasnt a year long wait I would ask to see another GI (in fact, I did but havent heard anything since.)

lol.. "been following this thread for like forever" .... trust me,...it feels like forever..!!

thanks everyone. I would have lost it if it werent for this forum. It seems to be the only thing that keeps me grounded.
 
"non-definitive crohns"
Click to expand...

I agree Wendy. To me it means it has the appearance of Crohns. A don't imagine a radiologist would give a diagnosis under these circumstances so they will use terms like that, looks like Crohns but we can't say that it definitely is.

Always thinking of you hun...:hug:
Dusty. xxxxxxxx
 
I find it interesting when I ask what caused the strictures and thickening of the bowel wall... they cant answer that. I reminded them that IBS doesnt cause that... they brought up surgeries can cause that but when I question only having 2 scopes... the nurse said not usually. It is typically big surgeries such as hysterectomies and the like that cause or can cause the adhesions that can cause the above. They cant give me answers.
Even the breath test they are giving me... it is to see if I have small bacteria overgrowth... which can be caused by numberous things... crohns and IBS included. Im not sure why they are doing this test. and my advocate was right ... why are they only now doing these tests??? They have lined up 4 all of a sudden.. 4 years after .....
 
Godammit Wendy, have you any hair left, or have you pulled it all out by now?

Frustrated for ya mate, :hug:
Dusty. xxx
 
Hiya Wendy

just popping in to send a big hug your way!
Unbelievable the stress you're going thro right now
Hope you're ok, keep swimming my friend
xxxxxx
 
Well, I guess that's about what I expected after a few days away...Wendy getting the run-around from her docs as usual!!! Grrrrr!!!!
 
well..first thing tomorrow morning I go get a tube inserted in thru my nose into my stomach. I have had tubes down the nose before and remember they pinned me down as your reaction is to yank it back out again (or mine was). I remember hating it.... they do try to make it a little easier by putting some lube on the end but it scrapes going down. I am hoping they can use a smaller (thinner tube). Then its taped.

so..anyone have any good jokes I can use b/c I know people are going to start depressing the crap outta me when they see it. I just want something to lighten the mood... it doesnt look so great so - I will be around a lot of people I know well afterwards so I dont want them to feel uncomfortable :) I know I will not need a straw that day.....

I can eat and everything...its just measuring acid content. anyone??
 
How long does it have to stay in??

It wasn't a joke, but Crabby had a sickly amusing experience with one of those tubes...She posted it on here somewhere last year. I hope that doesn't happen to you or anyone else for that matter. She vomited with it in and so had the tube running through her nose and back out her mouth! Like I say, not funny but yeah kind of funny the way she told it!
 
24 hours.

it is a 24 hour ph test. I am supposed to do what I would normally do so no going home and laying down ... it would ruin the test b/c gravity, etc. Have to sleep with it in ... its a nuisance and you can feel it in the way when you swallow. I am going to go for dinner somewhere tomorrow night and will be staying at the same place I stayed after surgery for the day .. that way i wont have to worry about strangers gawking at me. I will be working on my resume.

I will have to search for that story Dex. sounds kinda gross ...
 
Aww, good luck, Wendy! Hope they find something out with this test. I've never had to have a tube inserted like that, but can imagine it's not a very comfortable process. Hope the day goes by quickly for you! :)
 
"so..anyone have any good jokes I can use b/c I know people are going to start depressing the crap outta me when they see it. I just want something to lighten the mood... it doesnt look so great so - I will be around a lot of people"

I'm trying to think of something funny Wendy. Ummm...try going everywhere acting like a proper Zombie! You know, moan, shuffle, the works!

But what I really want to say is...I hope it goes well and you get thru it. Still think CT scan is the only way forward for you. Frankly, I wouldve put a hex on your Dr's! :hug:
 
Last edited:
I feel for you W!! I can't imagine having to eat with that! I hope it's going ok for ya!
 
Hope everything's ok Wendy?
Thinking of you and sending big squashy hugs your way, it'll soon be over!
xxxxxxxxx
 
thank-you everyone... it meant a lot to come on here to find all of these comments.
I actually had 2 tests done today which I didnt know. I had a motility test and am still doing the Ph gastric test. The motility test is a thicker tube put down your nose. First they put a wire thing in and spray 4 times and tell you not to breathe. This is supposed to be a local anaesthetic which by the way tastes very bad... very bitter. Then they dip the tip in another anaesthetic lube and make you sit as upright as possible on a stretcher and hand you a glass of water with a straw. It helps to drink the water while they are doing it as it tricks your stomach into thinking it is food. I got nautious when I didnt drink and almost threw up and not because of the gag reflex. Then they measure your acid and motility of stomach and esophageal muscles.
Then they give you a syringe of water and tell you to swallow and alternate it with do not swallow for about 40 seconds... then they take it out after about 1 hour.

Then they do the same thing with the thinner tube. Pretty much the same process only they tape it to your face and nose and put box around you - like you would a purse cross ways. You have to monitor everything. I will take a pic to show you. I get it out tomorrow at 8 am.

Dex, you are right. It is difficult to eat but they encourage it and they encourage you to eat everything that gives you issues... chocolate, coffee, etc...etc... not allowed any fruit juice, alcohol, etc., as it would be measuring the juice and not your acid reflux. You are also not supposed to eat lettuce as it tends to get wrapped around the tube and makes it difficult. Eating is difficult in general. It tends to pull on the tube when you swallow. Its not really painful just uncomfortable and sort of scary sensation. It really does look worse than it is. Its not comfortable by any means but it isnt that painful once in... and you do get use to the tugging on the tube with every swallow...whether eating or not... I scared a little toddler coming out of the hospital - she was pointing at me and she just looked scared. I also encountered people in an elevator in my building..once I got in it got very silent and then as soon as I stepped off, they just started chatting like nothing happened. I was with really supportive people all day so they were making me laugh and they just pretended like it was just very factual...which was good ... nobody made me feel like a freak or anything so I was grateful.

Here is a pic. I liked the hat idea as it was easier to hide my face when I was embarrassed. Funny how the people in my life encourage me to stop hiding ...

thanks again everyone... I really appreciate the emails. Made me smile when I logged on :) Almost done :) which means closer to answers.
oh..forgot me mention that after awhile, once the anaesthetic wears off... you have (or it feels like) you nostril is constantly running... ha...and I think it actually might be (I keep putting a kleenex to it...)
 

Attachments

  • Photo on 2011-06-28 at 13.26.jpg
    Photo on 2011-06-28 at 13.26.jpg
    72.3 KB
Last edited:
haha..thank-you... I did not intend to match the hat with the machine. I put the hat on after the hospital but it was already packed in my bag. I am still trying to figure out where the CDR's go :)
 
I KNOW>>> I MADE IT!!! HAHAHAHAHAHAHAHAHA :)

I have no idea what the readings mean .. I started off with a gastric pH 2.3
I have seen it fluctuate as high as 7.0 and everywhere in between.

It wasn't that bad (except the stuff they spray to freeze.) ALSO... if you ever have one done, drink a coffee or something hot right after, it makes the tube in your throat a little less rigid and makes it easier to swallow for awhile. ;)

I have never been so happy to go to the hospital :D
 

Similar threads

M
Surgery to Correct Stricter from Crohns
Replies
3
Views
1K
Entchen
Entchen
Papantoine
Neglect?
Replies
0
Views
243
Papantoine
Papantoine
M
7 year old in pain not diagnosed
Replies
4
Views
1K
my little penguin
my little penguin
K
This has destroyed my life.
Replies
27
Views
3K
kephra
K
N
Nick's Story
Replies
4
Views
1K
Nick Dean
N

Latest posts

Back
Top