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I think you did a very good thing! You are sick and you do need a doctor to recognize that! That is something I have struggled with since I got sick too...I ask my husband all the time, but what if the doctor is right? Then I realize he doesn't feel what I feel, or go through day after day of pain and struggle! I REALLY hope the new GI gets things under control!
 
Good luck Tracy!!! I hope the appointment goes well (and that the next couple of weeks aren't too rough for you...) :rosette1:
 
Hey T!

So sorry to hear that your symptoms are still hanging around hun, boo! :(

BUT way to go T, I am so happy and proud of you! :medal1:

Sending you all the luck in the world mate that this new doc is just the ants pants!...:goodluck:

Love ya! :heart:
Dusty. xxx
 
I just went out to get the mail and found that my GYN has sent me a copy of my post op report !
Wow...I loved reading it, but only because it let me know how bad things really were (are?) inside me and made me feel much better about the fact that I just dumped my GI doc! I'm going to type out the "findings" on the report just so you can enjoy a good, yucky , read :lol: I'm not a "crazy hypochondriac" after all...pretty sad I have to read my own post op report to confirm that to myself tho! :loll:

"The laparoscopic examination revealed extensive adhesions of the omentum to the anterior abdominal wall across the whole descending colon. All of the omentum below the umbilicus was firmly adherent to the anterior abdominal wall. The left ovary had been obliterated by this sheet of omentum, it was normal once we took a look. There was no significant ovarian cyst. The uterus was absent. The vaginal cuff was completely encased in the omental and bowel adhesions. The right ovary was firmly affixed to the vaginal cuff and there was quite a bit of stretch on the infundibulopevlic ligament. The ovary was encased in adhesions as well as these were all successfully removed. There was a cyst on this ovary which was ruptured with clear fluid. It was a follicular cyst. The appendix was kinked over in the middle. There was a flimsy adhesions around the entire appendix consistent with chronic appendicitis. The terminal ileum revealed no evidence of Meckel's diverticulum. The upper abdomen revealed a normal liver, a normal upper GI system. There were minimal adhesions in the upper abdomen."

Then he went on to explain the procedure in depth...I'll spare you all the gory details of that! :lol:

It's ashame that even after all of that being removed that I'm still not better:(
Oh well...maybe someday right ! :)

He did mention in the "procedure" part that the reason I had 4 incisions is because when they tried to go in through the right side, they couldn't even get in due to the extensive adhesions !
 
Ooooo, thanks for posting T!

Hmmmm, sounds like it would have been easier to cite where you didn't have adhesions! Oh man T, after all you have been through with this op and still no relief. :( (((MEGA HUGS))) to you mate. :hug:

Dusty. xxx
 
I knew you would enjoy reading something like that Dusty! LOL .. Great minds ..

I can't wait to meet the new GI doctor; I feel like I've wasted 10 years of my life on the old one. You live, you learn right ?
 
You sure do T! and the main thing is you are moving in the right direction. Kudos to you mate! :thumleft::thumleft::thumleft:

Dusty. xxx
 
Wow Tracy, they certainly found a lot! I'm with Dusty, I can't believe they found and cleaned up all that but you're still doing poorly - it's awful to think that there's even more going on than what they already found. I hope your new GI is wonderful and can get to the bottom of this once and for all and get you some answers and relief already!
 
Wow Crohns mum I'm delighted for you in one way and now there is something in black and white that you can say "there you are, told you so" but sorry you are still sufferring. Onward and upward I hope
 
You know what a big positive is to all of this....There isn't a doctor out there that can blame my pain on my gallbladder, appendix, or "female" issues since all of those organs have been removed! I am but a shell LOL about the only thing left in me is my intestines!

:ylol: :hallo3: :ylol:
 
Thanks for sharing T. I hope your new GI helps you. I cannot recall, but did you have a colonoscopy or CT scan? and did they show any bowel issues?
 
HI again :)

Well, I met my new GI this morning, and...I think I love him! :ylol:
Don't get me wrong...I still don't know what the heck is wrong with me...but he listened to me and he asked me more questions than any other doctor ever has! And then he listened some more.
I felt like an idiot from the beginning because as soon as he said "Tell me why you're here today", the last 15 years of being sick and feeling so defeated flashed through my head and all I could say to him was (as I started to cry) "I'm just so tired of being sick and feeling like no one believes me".
Ugghh....don't cha just hate it when your emotions won't hide !! LOL.
Anyhow, he was so kind, handed me tissues, said he understands and then he waited for me to pull myself together.

So, we went over pretty much everything I could think of, and even things I didn't want to "bother" him with (such as arthritis pain, major migraines, extreme fatigue). He asked for details about those things...I couldn't believe it.

After we went through all of the symptoms in detail, and all 8 of my surgeries (I made sure to tell him that every single one of my surgeries have all stemmed from these same symptoms all these years) he gave me his opinions and course of action to begin.

Now don't get offended or mad my fellow "undiagnosed" when I tell you his first speculation LOL ... The first thing he started explaining was the infamous IBS ! While I do firmly agree that most IBS diagnosed is used as a "catch all" when the doctors don't know what is wrong, I also believe that is is a real condition/functional disorder. And, I would be more than happy to have that as a diagnosis if and only if, they (doctors) can prove to me that there is nothing else wrong. It seems to me from talking to him that this is exactly what he is going to do. He did say that from first glance he does think that I may "just" have IBS, however, he is not willing to just leave it at that and he can not ignore the fact that my daughter has severe Crohn's. In fact he was very interested in hearing all about her disease, process of diagnosis, and prognosis. So I told him everything. I probably talked more in detail about her disease and symptoms and treatment then I did my own history haha.

Anyhow...I'm rambling...
He is moving quickly for me thank goodness.
I am already scheduled for a colonoscopy on Monday morning first thing! (I have to do the dreaded MoviPrep! ugghh) He said that he is looking for Microscopic Colitis (David if you're reading this I instantly thought of you! LOL) And also he said the main reason he wants to do this is to look for Crohn's. I questioned him on how far into my small intestines he would be able to see; he said just past the terminal ileum where Crohn's is usually found. He said if nothing shows, then we can discuss other tests afterwards.

And also I am scheduled for first thing Tuesday morning to have a Hydrogen Breath Test. He said this is used to look for bacterial overgrowth in my intestines. He wants to do this because of my recent surgery and the finding of the severe adhesions I had. They said to be prepared to be there between and hour and a half to possibly 3 hours. This test should be pretty simple since all I have to do is breath a little heavy LOL.

After the tests are complete and the results are in he is planning on prescribing Amitriptyline to me and see if it helps. He said even if it doesn't help with the diarrhea issues, then it will at least help with the pain, and better yet with my severe migraines. So, I am more than willing to give this med a try, especially since I have heard such great things about it from others on here.

So I have a little hope again today even if I don't feel any better yet! :)
I am pretty excited about this new doctor...especially since all of this came about and he doesn't even have his hands on my past medical records yet. I just signed the release for them this morning !

Wish me luck please everyone ! I just want to feel semi-normal again ~ I know we all do! :ghug:

(I apologize this is so lengthy !) :shifty-t:
 
Tracy, that's great that you've found such a good GI! When you're done with him, can you send him up to Wisconsin for me? ;) (Just kidding of course.)

I believe a couple of people in the club (StarGirrrl and Crag) have also had that hydrogen breath test, so hopefully they can give you a good idea of what to expect. And wow, what a quick appointment for a scope! I hope it all goes well.

I'm one of the ones on Amitriptyline and I like it very much. I don't think it's done a thing for me as far as cramping or d, but it has prevented my migraines and helps me sleep at night, so I'm happy to stick with it. Did the doc say what dosage he'd likely put you on? I'm on 25 mg which seems to be the perfect dosage for me - my GI once bumped me up to 40 mg, at which point my migraines came back, so I'm back down to 25 mg now and doing well on that.

Is this new GI at the Mayo Clinic? I know you've said your daughter goes there.
 
Yep I had the breath test, the drink you get can react in one of three ways: no reaction, gassy, or a prep-like effect. After your c-scope the day before I really hope the latter doesn't happen to you as it did me!

Apart from that, it does take a few hours and get tedious, so take in a book or something, I found having a wander around after each puff helped the time go quicker.
 
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It is so fab to hear that you are finally being validated T! God I hope this is the doc that is going to give you solid answers hun. Hopin', wishin' and prayin' for ya mate...

:goodluck::goodluck::goodluck:​

Loads of love, :heart:
Dusty. xxxxxxxx
 
Hey T! IBS, IBD...I don't give a damn what they call it as long as they make you feel better:)!!
 
Thanks everyone :)

No Cat he didn't mention dosage yet. And I wish you could find a decent doctor where you are !! Don't be like me and wait 10 years to switch .. it didn't do me a bit of good to try and respect the fact that "he's the doctor", or "he was nice today", or anything !
 
I'm about to start the MoviPrep....
I'm absolutely dreading it. I have been feeling like garbage for days now and I don't think this stuff is going to make it better ! LOL
Argghhh....down the hatch ...
 
Good luck T!!!...:goodluck:


Bottoms up! or should that be bottoms down...:eek:utahere:


Love ya mate, :kiss:
Dusty. xxxxxxxx
 
Hope everything came out ok!! :). Good luck T!! It'll all be worth it, if you get some solid answers!!
 
Still workin' on that delicious prep? Good luck. Be strong. The worst is almost over. :hug:
 
I've been home for a while but I had to sleep ! I wasn't able to go to sleep until around 6 a.m. this morning and had to be up at 7, so I was quite tired! :eek2:

Anyhow, just as I pretty much figured, the GI said everything appears "normal" and looked pretty good. He said he did take several biopsies and I will have the results within a week at most.
We had to cancel the breath test because I asked him if todays testing would interfere with the results of that and he said oh yes. He didn't realize they had scheduled it for the day after the colonoscopy. And since it was being used to test for bacterial overgrowth in my intestines, and we just cleaned them out, the chances of it showing any are slim to none. So now I wait a couple of weeks and then reschedule it; that is IF my symptoms return he said ! :lol: He gave me the "sometimes people feel magically better after a colonoscopy just because of the cleansing" speech! hahah. I said no offense doc, but I have become a bit pessimistic about feeling better at all since I have been going through this for 15+ years, and this is my 5th colonoscopy. He said oh, I understand. hmmmm.

He started talking about the possibility of just IBS again and I said ok, maybe it is and maybe I'm going down the wrong road trying to figure out what is wrong with me. Then he asked what I meant by that. I said listen, I have learned A LOT about the digestive system in the last few years and IBS does not explain the fevers every single day, the bleeding, or the consistent pain, or arthritis. So IF its 'JUST' IBS then maybe I need to be pursuing a different route with a different doctor! That's when he simply said, " I know you do know and understand a lot, it's just a thought with the IBS and I've only met you twice now, so please be patient and give me a little more time to figure this out".

He really is a nice man with great bedside manner, but honestly, I'm not going to hang around his office wasting another 10 years. I already did that with the last doctor, and at least with the old one he has said from the beginning that it's definitely NOT IBS. I will give it another couple of months with him and see how it goes from there.

I think i am going to make an appointment with a Rheumatologist in the meantime tho because my arthritis is getting progressively worse. The bone in my left knee has visibly changed and is bulging a bit out of the side now. There are days when it acts up that I can't even put pressure on it. And that's just one knee..never mind the other knee, my elbows, hips, shoulders, and lower back :lol: I was told about 6 years ago when I was tested for Rheumatoid Arthritis, that I didn't have RA but I did have Ankylosing Spondilitis. I blew it off as "oh I just have arthritis" but I know better now then to do that (probably since my knee bone is deformed already).

I've rambled again..so sorry...I'll blame it on the left over anesthesia still in my system :dance:

Hope everyones having a great, pain free, day! :hug:
 
Sorry your doc didn't find anything to know whats wrong!

Have you considered other autimmune illnesses? I had similar symptoms, and my rheumy thinks its IBS and Lupus, and the lupus is kicking the IBS into high gear.
 
yes, I've definitely considered it :) I've had at least 3 different doctors think that I have Lupus because of the many petchia that I have on my chest, neck, arms and face; along with the other symptoms. Unfortunately, it's just about as hard to diagnose that sometimes as it is CD. My ANA is always negative, and I have been told that you can still have Lupus and negative ANA. One of my first cousins has Lupus and she is ANA negative and it took her almost 10 years to finally get a diagnosis.
don't you just love the roller coaster we live on! :ywow:
 
Gotcha... yeah, it is just as hard, and it sucks! My Rheumy is basically going to diagnose me as soon as my ANA is positive, and I was tested for the first time a week ago. He said if it is negative he is going to diagnose fibromyalgia, then diagnose Lupus when my ANA is positive. I'm glad this doctor isn't giving me the run around like others can....
 
Oh, I'm sorry that you didn't receive more definitive answers! :yfrown: I can't imagine how frustrating this must be for you! :ybatty:

I hope the biopsies or breath test lead you in some direction towards a diagnosis. :confused2:

After 15 years, I'm sure you have tried everything but, just a thought... there's always lots of talk about keeping a log to try to find a pattern of what makes you ill but, have you ever tried keeping a log to try to identify a pattern before you feel 'well' for a few days? Perhaps, after years of focusing on the things that cause you problems, looking at things from a different perspective might give you some clues??? I admit, it's a stretch, I doubt there's much you've missed but...
 
Hi T. I do hope you get answers! It is so frustrating. I am glad you are going to the rheumi. Have you ever been given a short dose of prednisone to see if it helps with your pain?
 
Thanks guys :)

Jeanne, yes I have been on prednisone (7 day tapers) for my arthritis and costochondritis a few times through the years and it helps while I am on it. I still hate that dreaded drug tho! haha :)
 
Ah hell T! I'm so sorry you didn't get answers! Grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr!

I know you will keep pushing mate and I'll be with you every step of the way!

:hang:

Dusty. :heart:
 
Help! :lol:
I don't know what is happening to my face ! I need some opinions..
Do you think this is a new "symptom" in combination with my digestive issues? Or totally unrelated?
It just appeared about 2 nights a go, raised bumps and warm and bothersome.
Ugghh...my face ! :lol:





picture.php
 
Is it a rash? I get facial rashes all the time. :( Mine are raised red bumps, or patches of dry flaky skin that bleeds at its worst.

I would bring it up to your doctors! I know my rashes are helping my lupus dx....
 
yes, it's definitely a 'rash" and from the sound of it sounds just like yours :(
Ughh..I really hate it!
I've been using hydrocortisone 1% on it, but only once per day because the pharmacist said to use it sparingly. It's starting to help I think, but now I have another patch breaking out above my eyebrow ? Weird !
 
no it's not the typical butterfly rash. But I will say this...the sun and I are not friends at all any more ! It's terrible. I was visiting Gab last week and we were outside, under an umbrella, eating lunch. I had the top right side of my thigh exposed (well I had jeans on) to the sun..that was the only part of me. I went to the bathroom about 20 mins later and that entire spot was broke out in a bright red rash...through my jeans ! It's crazy how bad I react to even the slightest bit of sun now.
Thanks :)
 
Are you on any new medicine Tracy? I hope you doctor can help figure this out! Danny also became extremely sensitive to sun - mostly just burned and blisters too easily ... not a rash.
 
Yikes! Don't know how I missed this one T!

I wonder if it could be rosacea???

Interestingly enough there is some debate that intestinal bacterial overgrowth could be a cause of rosacea.

How is the rash now?

Dusty. :heart:
 
I am prescribed a new med, but haven't started it yet.

Dusty, I have researched rosacea to see how to treat it. It would be nice if its that because it will go away. I have been using the hydrocortisone cream and it's almost healed up. Problem is now I have a patch beneath my left eye, on my cheek.
I find it odd how this happened after spending just a small amount of time in the sunshine last Monday...
 
Well ... after having a Gastric Emptying Scan yesterday ( I haven't been able to eat more than a couple of bites again lately, and starting to lose weight again)..I have been diagnosed with Gastroparesis and put on a medication that I have to go and pick up this evening. It's supposed to make my stomach contract and push the (soft only) foods through. I'm to take it a half hour before meals and at bedtime.
They gave this same med to me yesterday, actually 2 different ones, after they saw that the half of a radioactive egg sandwich they had me eat was still sitting in my stomach 3 hours later. The meds didn't make it budge a bit. In fact, I've had nothing to eat since yesterday morning and I am still "full". I may try some Ensure drinks because I am getting very shaky and weak from no food and I need some nutrition to be able to take care of my sweet daughter this week + for her surgery.
Doctor said to give the med a few days to begin to work. He is hopeful that this is my problem and will solve my "issues".
At least he's done trying to tell me "it's JUST IBS".
Personally, I'm thinking I have some sort of blockage or stricture that has formed. Hopefully I am wrong, but that's how I feel. Water isn't even going down well at this point today.
Whew, I am exhausted LOL
I don't know how to feel about this new "diagnosis" as there's no "cure" for it either and I have to eat like a mouse forever and still never enjoy all the foods I use to. Oh well, I'll get over it right :ylol2:
 
Wow Crohns mum, nightmare. Just seen this thread and totally out of the loop at the moment with how everyone is doing. I hope it will get sorted for you. God knows half of us should be on "Somewhere's Next top model" with the figures we must have from eating sod all! Best of luck!
 
Ah hell T, it doesn't rain, it pours. :hug:

I well imagine this week and next aren't making your stomach issues any easier either. :(

I so hope the doc is right and it will take the meds a few days to kick in but I think I see your eye roll from here, yeah? :rolleyes: Oh well, if not yours you'll probably see mine! :lol:

Good luck hun. I know you have other things on your mind right now but let us know how you get on when you get the chance. :hug:

Love ya loads mate, :heart:
Dusty. xxxxxxxx
 
Thanks :)

I guess at least he's paying attention a little closer now ?
Ahh..hell, yes I am rolling my eyes ! :lol:

I am amazed at how quickly the weight that I managed to put back on, has now disappeared in a matter of a few days. Jeans that were too tight on me last week, are being held up (barely) by a belt today.
I'm sure partly from the stress, but not eating and what I do eat not being absorbed (by the evidence in my toilet ! LOL) is not helping either.

I'm more than willing to give the meds a shot. I'll do anything he tells me at this point to get better...even if I don't whole heartedly agree :eek:

Gabrielle offered to let me have Ozzie after she's done with him ! :rof::rof:
 
I would be trying anything too T!

Ahhhh ya gotta that girl! and so giving too! :ylol2:

Dusty. :heart:
 
Wow T! You have been busy the last couple of days! Hope the stuff helps! Lord knows you need a break!!!!
 
HI all :)

so, it's been a little over a month since my 'gastro-paresis' diagnosis, with no relief. My doctor has stopped the Erythroicn medication that was supposed to help and didn't, and replaced it with another similar. That doesn't help either. I went back to his office for my follow up appointment about 2 weeks a go, and I had lost 14 pounds since my last visit 4 weeks prior. You know what he says to me ?? "Hmmmm, I think we should concentrate on getting you to be able to eat more". Seriously ?? :ywow:
I explained to him that my previous diarrhea issues (10-15+ times a day) had now decreased to maybe 1-2 and that I "just don't feel right". Well, his genius self decided that the few bm's was due to his prescription of Amitriptline (sp?) begging to work. OH how I wish you all could have seen his expression when I informed him that I hadn't taken that stupid medication in about 3 weeks ! LOL. I stopped taking it because he had upped the dose right before my gastroparesis diagnosis, and once he did my stomach was in twice the pain it already was in prior. So I decided to research the med a little more and guess what I found out....It specifically says on websites that have information about gastroparesis that you should NOT take amitriptaline or similar meds with this disorder as it will slow your stomach even more ! Ay yi yi...why did I bother to switch doctors ? LOL.

Anyhow, I still can't eat more than a few bites a day. Every now and then (maybe once per week) my stomach feels "ok" and hungry and I make the mistake of eating more and taking advantage of the hunger ~ only to be left with the pain afterwards because the food has no where to go :( I've also began vomiting quite often the last couple of weeks. I vomit on average 1-3 times per day, most days. Sometimes I get a break :)
It's getting ridiculous really.
I guess I need to find yet another GI doctor ~ I just don't want to. Gab is doing quite well lately and I am sick of doctors. Especially the ones like my GI who insists that all of my "issues" are because I was stressed about Gab's upcoming surgery! Even went I went back a month after her surgery, and had lost 14 pounds, he still insists thats whats wrong and now I'll get magically better. Well here it is 2 weeks past that appointment, Im more relaxed than I have been in 2 years, and I have no clothes that fit me and Gabrielle is scolding me because "you're getting way too skinny mom" :(

so what do I do ?? do I continue pursing doctors ? Or do I just sit and wait until I get so sick that I am literally hospitalized and they are forced to pay attention? I just don't know anymore. I am just so over being looked at like I am just crazy and stressed and whiny. Even withering away before my doctors eyes isn't enough to get his attention to look into things further.

sorry, I guess this ended up being a "vent" LOL..I didn't mean for that to happen :)
 
Tracy, this is awful! I am sorry. I do think you need a new doctor. Is Gab's an adult GI? (wondering if you could go to him?) Have your tried drinks like ensure?
 
T, I agree with Jeanne, I would look for a new doctor. My GI gets concerned when I lose 5 lbs - for you to lose 14 and your doc to not be concerned at all, it sounds like he isn't very good and/or doesn't care. The vomiting is scary too, new symptoms are never good. Worried about you! I hope you can get things under control and get some answers very soon. Take care!
 
Crohn's Mom,
Keep advocating for yourself--would your GP help you?

I was in a similar situation about 11 months ago--getting sicker by the day and losing weight fast. Because I was overweight to begin with, the doctors didn't feel any urgency to help me. I ended up going on EN (see the EN sub-forum in the treatment section) after researching it myself as a way to get nutrition into me while I sought more help.

There were a lot of problems accessing treatment, getting the correct info to the specialist, and being believed that my symptoms were as severe as they were (my blood work at the time hadn't yet caught up to how ill I was). Now I have a good relationship with my GP and the specialist from continuing to press them for answers and by keeping a symptom diary, food diary and weight loss diary to prove that it wasn't 'just stress' or IBS, etc.

I also gained a lot of respect from them by using EN exclusively on my own as a way to help myself (with the help of the pharmacist and dietician).

Looking back, if I were in this situation again, I would take someone with me to help advocate for me and not leave until the doctor agreed to help me. It is so very difficult to do this yourself when you are so ill and tired.

Please do keep fighting for help. May you soon get some answers--and some help.
 
Thanks Happy for that info :)
I just read your story the other day when I did a search on here for gastroparesis stories. I think I read that you lost 85 pounds before they really paid attention ?? How awful. My stomach has only been doing this for about 2 months now, so I can't imagine what you have gone through :(
Is it better now? Are you able to eat? My doctor basically says there's no cure, and there's only one more medication we can try, and "that's it". He doesn't know about the new vomiting yet. I thought about calling and updating the office, but then I figured why ?
I just want to eat again ~ I miss food..I LOVE food LOL. I didn't really have the 14 pounds to lose as I'm not very big to begin with. I went to thrift stores to get a couple pairs of jeans that would "fit" me and I had to buy a size 0. Seriously..is that even a legitimate "size" ?? LOL..ridiculous.
I never understood girls that strive to be, and stay, that skinny. I'm 5'6 and I'm down to 125 pounds, and while that is a "healthy" weight for most, it happens to be a very "skinny" weight for me as I am what they call "big boned" lol.

I bought some Boosts drinks, and also some yogurt smoothie drinks for a bit of supplementation. I don't think they will keep any weight on me, but I tend to get very weak and dizzy lately from the lack of nutrition, so they seem to be helping with that at least. :)

Thanks again ~ much appreciated :)
 
Crohn's Mom,
I really do think that you should let your doctor know about the vomiting--it could be a sign of something more serious going on.

My weight loss was actually 55 pounds, but my weight is stable now that I am in remission. I have not been diagnosed with gastroparesis, only IBD, and that is in remission from EN and an elimination diet and luck.

Again looking back, I was just struggling to survive, not really able to be objective and insist that someone help me. I really do not want to see you get to the state that I was in--so malnourished that it affected my vision. It is not necessary for you to lose anymore weight for the doctors to take you seriously--please insist that they help.
 
I made the mistake of eating a small piece of chocolate today that had some peanuts in it...
Feel free to give me a virtual kick to remind me of my stupidity !
How in the world does such a small little peanut cause so much pain and bloating ?!?!?!?!

:ybatty::ybatty::ybatty:
 

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