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02-02-2011, 12:49 PM   #61
same-old-thing
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So many years...I've had all the tests done and all are normal except for consistantly abnormal bloodwork. Some Drs. have told me it's IBS, some say an IBD and some even say it's in my head - so easy to believe now I'm so deeply depressed. I am very shy on public forums but would love to talk to someone who can relate, so would really appreciate any personal messages.
02-02-2011, 01:27 PM   #62
supercellbaebe
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I have been in this exact situation for 14+ years now. I can't eat at all without being extremely ill and in excruciating pain and I have been labeled Anorexic and basically dumped on the scrap heap. Its just one long nightmare.

Medical professionals can be absolute bullies, they have bullied and intimidated me for years and I have been sectioned and force fed with food that has repeatedly just made me ill.

I have also been left to completely starve for months on end, because the medical profession has refused to prescribe me Elemental Drinks, which are the only things I can tolerate. I'm very lucky to still be alive. Rather than give me drinks I need, they would allow me to starve to death, it is pure cruelty and hell on earth, the sheer irony of it all amazes me, these are supposed to be people in a "caring" profession.

It feels like you are banging your head against a brick wall. Awful.

It is diabolical that conditions like this get ignored and told they are in our heads the GPs want an easy answer and unless the answer is sitting there staring them in the face, we imagine it. Disgusting. It makes me so very angry. How many others like us must be out there?

Stay strong and never be intimidated and stay alive.

Big Hugs everyone!

xxx

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Last edited by supercellbaebe; 02-02-2011 at 01:39 PM.
02-03-2011, 02:33 AM   #63
littlemissh
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Not all medical professionals are uncaring bullies supercell , though it sounds like you have had/ are having a nightmare.
Have they managed to diagnose you or are you still in the undiagnosed club? I know what you mean about people thinking you are anorexic - they don't understand how hideous it is to eat and then have pain and feel so nauseous or vomit- that it's just better not to eat in the first place. Once you have a diagnosis they accept it- but why couldn't they before? I suppose it is a bit weird really. I'm looking forward to the day I look forward to enjoy food- as no doubt you are.
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02-04-2011, 08:36 AM   #64
supercellbaebe
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Thank you littlemissh for your lovely message,

Unfortunately I am still very much in the undiagnosed club

I had my appointment with my GI yesterday. I must admit, it was more than a little disappointing. In short "They Can't Help Me."

It was a total farce of an appointment. I was prescribed a loads of laxatives and chemicals which I have previously tried and which previously had no effect of my digestive problems. Then I was sent away. Tests have showed nothing is wrong with my Colon you see.

I then saw my GP yesterday afternoon and relayed to events to him. He promptly decided to say something, which frankly scares me to death:

"Heidi, this is you causing all your problems, this is all in your head. You must get over it. Eat, or you will die."

What good is that? If it is me causing this, I haven't a clue in hell how I'm doing it to myself!

Now, more waiting. I have to wait till 10th March to see my useless psychiatrist (who cannot help me, because I am not mentally ill) in order to get a referral to a psychologist, who maybe can help me.

Could a chronic anxiety and an Eating phobia, really cause someone to physically make themselves so ill, they cannot eat food without excruciating pain and horrific IBS?

My biggest fear is that my GP will stop prescribing me the Elemental Drinks. I will starve to death if he does. He wants me to be working towards getting off them, how long will he give me? Panic!!!

Could I really be doing this to myself?

Oh like you littlemissh, I am desperate to eat, really really desperate. I miss what is was like before all this hell. I'm sure you do as well, it makes me envious to see others taking for granted such a little thing as eating, they don't know how lucky they are.

I feel bad for looking at others like that its not their fault they can eat, but I don't seem to be able to stop feeling like that. I hope one day very soon that we can all on this site, be just like them and just eat, without a care in the world.

You can probably tell by the tone of my email, I'm pretty beaten down at the moment, but I'll pick myself up again, I'm sure. Just take a bit of self coaching I think!

02-11-2011, 01:56 AM   #65
num1habsfan
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January 28/11 was 6 years for me. 4 scopes (2 each way), 2 small-bowel follow-throughs, MRI, regular CT scan, blood work every flare, many stool samples checking for bacterial infections... all negative. I have been waiting for over a year for an urgent CT Enterography.

My symptoms when I am flaring include vomiting, nausea, fever, dizzyness, overall weakness, mucus-y diarrhea, urgency, diarrhea of 4-12 times a day (sometimes i can't even stomach fluids), diarrhea during the night, lower right hand side of tummy that feels on fire, bloody diarrhea, and loss of appetite.

The longest I've ever gone was 5 1/2 months without a flareup which was June - November 2010, and that was because I put myself on a very strict IBD diet of nearly eliminating red meat and veggies.

I got relief on the typical meds for an IBD: the combo of Cipro and Flagyl, or Prednisone (ESPECIALLY Prednisone). Nothing else gives relief of the symptoms or pain.

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Celiac Disease, Jan/03; Asthma, Sept/04; Symptoms of an IBD, Jan.28/06; Esophagitis (cured) and Hiatus Hernia, Jan/07; Hypothyroidism, June 14/07; gallbladder issues, Dec/07; Lumbar facet arthritis, Oct.10/08; Iron deficiency anemia, Nov.3/08 (cured); Anxiety, May/09; Osteoarthritis, Mar/09; Hypertension, Nov/09; Osteoporosis, Nov/09; Levoconex lumbar scoliosis, Mar 17/11
02-11-2011, 08:24 AM   #66
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Hi everyone! I am happy to inform you that after the last round of tests I have been officially diagnosed with Crohn's colitis. I had a loop ileostomy in Dec and am eating well again. Now I'm working on getting out of the house more often. It's funny how you can become so complacent with a certain way of life. Now that I'm doing better I don't know what do to with myself!

I am saddened to read all your stories of what you're going through right now. I was there for a while myself. These past 5 years especially. From doctor to doctor. Some making me feel like it was all in my head! Some just throwing drugs at me that didn't help and sometimes made it worse. But I knew it wasn't in my head and I knew there had to be another treatment option. So I didn't give up (although I was quite close a few times) and found a GI that actually listens and genuinely cares. They really are out there believe it or not. Don't give up!!

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02-11-2011, 04:10 PM   #67
Cat-a-Tonic
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Num1: Waiting a year for an "urgent" CT? That's awful! It's good that you respond to pred though, because then you can rule out certain things (such as IBS!). Just a thought, have you ever been checked for Addison's disease? Apparently it can include symptoms that are similar to IBD (diarrhea, dizziness, abdominal pain, etc) and it also responds to pred. When I found out that I respond to pred, my GI thought I might have Addison's because of the fact that all my tests have come back normal (which would make sense for Addison's because there wouldn't be inflammation or anything like that going on - it's a problem with the adrenal glands). So I had a couple blood tests for Addisons but they came back normal for me. Just a thought since it sounds like you've been through every IBD test there is too. Apparently Addison's is pretty rare so a lot of doctors don't think to test for it.

Amy: Congrats on finally getting diagnosed! Sounds like you had a long rough road to get to a diagnosis, good for you for not giving up. Enjoy your newfound ability to leave the house!
02-12-2011, 12:47 AM   #68
num1habsfan
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Num1: Waiting a year for an "urgent" CT? That's awful! It's good that you respond to pred though, because then you can rule out certain things (such as IBS!). Just a thought, have you ever been checked for Addison's disease? Apparently it can include symptoms that are similar to IBD (diarrhea, dizziness, abdominal pain, etc) and it also responds to pred. When I found out that I respond to pred, my GI thought I might have Addison's because of the fact that all my tests have come back normal (which would make sense for Addison's because there wouldn't be inflammation or anything like that going on - it's a problem with the adrenal glands). So I had a couple blood tests for Addisons but they came back normal for me. Just a thought since it sounds like you've been through every IBD test there is too. Apparently Addison's is pretty rare so a lot of doctors don't think to test for it.

No I haven't been tested for Addison's, but when my good family doctor returns to Canada I will mention it to her... can't hurt.
02-12-2011, 04:47 AM   #69
num1habsfan
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Read my "OMG!!" thread post for my latest battle as an undiagnosed sufferer :/. I created an extra thread because I didn't want to bombard this one...
02-12-2011, 06:13 AM   #70
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Num1, I'm so sorry to hear what you're going through. Here's my concern: the 1 year wait. I also live on the prairies. My wait time for an emergency CT was 4-5 days. I am not sure if emergency is considered a different category from urgent, but I have to wonder if the note to give you some degree of priority was removed from your paperwork. I could see 4 months, but not a year. Have you checked to ensure that the paperwork is still in the system? Really hope things work out for you.
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Have used: 4500 mg Pentasa, 4500 mg Salofalk, Flagyl, Cipro, 50 mg Prednisone, 9 mg Entocort.
Turned my Crohn's life around: ginger for nausea.
Claim to fame: "loopy and floppy" colon
02-12-2011, 09:54 AM   #71
num1habsfan
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Num1, I'm so sorry to hear what you're going through. Here's my concern: the 1 year wait. I also live on the prairies. My wait time for an emergency CT was 4-5 days. I am not sure if emergency is considered a different category from urgent, but I have to wonder if the note to give you some degree of priority was removed from your paperwork. I could see 4 months, but not a year. Have you checked to ensure that the paperwork is still in the system? Really hope things work out for you.
I've gotten actual CTs immediately if I've needed. but this CTE is through my GI in Saskatoon. He has called twice trying to get it sped up without any luck. When I called the Client Representative for that region she tried to find out where I was on the list and the lady couldn't even find me in the next 3 weeks (that was back in november yet). Its just stupid!

I made a typo, it was 5 yrs now not 6 but that is bad enough :/.
02-18-2011, 07:03 AM   #72
allieinwonder
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Waiting for tests suck

I am still well into this club. I have a new GI, someone at the military hospital 3.5 hours away from my house. I have seen him once and it was a great appointment, but it doesn't look like I will get a diagnosis though. He says since all the tests have come back normal in the past few months that he wants to stop testing and try and treat me for severe IBS. He says he hates the term IBS, because its a garbage bag term basically saying they don't know whats wrong with you. He doesn't want to put me through any more tests because of the stress and lack of results. He did do a blood test, one to test for celiac disease and another to test for inflammation and anemia, but he thinks they will all come back normal.

He did ask several times if my family has history of colon cancer, and he is concerned that it is a possibility of what I have. I had a colonoscopy, wouldn't that show cancer? *shrug* I did research and my great grandparents did have colon cancer. My father's side has a lot of digestive issues, like diverticulitis and stomach ulcers, but they have ruled both of those out.

He says he will not give me crohn's meds to see if I respond to them, because he says that it is malpractice. He also is considering taking me off the tramadol, saying that me being on these heavy pain meds for so long is also malpractice. I really hope he doesn't...my pain is so bad, I need these meds to function. Its the only thing that helps right now.

My current plan is to try and get a colonoscopy with this GI before he goes to a new duty station. He says that I'm not crazy, something is seriously wrong, and that we need to work together to make my life livable again. I hope to get a diagnosis out of his concern, but I have my doubts.

How do you guys deal with not having a diagnosis? I just wish I could have a break. Just a little time where I feel normal again. I can take pain meds, but then I feel loopy. I used to be busy all the time, but now the fatigue has taken over and I am the laziest person ever. Being undiagnosed means minimum help from doctors, and no meds to help...how can I feel normal again? Is it even possible?
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02-18-2011, 12:01 PM   #73
same-old-thing
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allieinwonder: Your story is so similar to mine. They first thought colon cancer but that was ruled out with colonoscopies - I had grandparents with colon cancer also. They will not treat me with anything either, saying that if I were to respond to a medication it would only be temporary and still not give answers as to what my problem is. Basically it would be a temporary measure to cover up the real issue. Some Drs have pointed out that I have too many other things going on for it to be simply IBS, but that's all I have to go by at this point. So my life seems to be permanently on hold and I have stopped the constant repeating of tests to cut the stress on both me and my family. However the depression that comes with dealing with this day after day continues, so I know where you're coming from. I am trying to accept I'll never feel 'normal' again and just struggling to work with what I have - sorry I can't offer more than that. Seems like we're in the same boat. I hope you get answers soon.
02-18-2011, 12:08 PM   #74
allieinwonder
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Yeah, the part of trying to realize I wont ever feel normal again is probably the worst part. My husband is very frustrated at my illness, and the fact that we have no answers. I have been pretty bad this week, and he has a four-day weekend this weekend, and he is very upset that we aren't out exploring Europe. The pressure to try and be normal again from him is overwhelming.

I know at some point I will get a diagnosis, but I think at this point it will be awhile from now. My GI also thinks this has to be more than IBS because of all my crippling symptoms, but he can't find it. I'm afraid I will just have to keep on going until it gets worse and they look again in an emergency situation. I think its very sad that this happens to people like us..I wish there was a way the medical community could make this easier for us so that we can lead normal lives and not have to live for years in agony, pain and stress.

I know a lot of people on this forum got their diagnosis from persistence..but I persist, and I get my tests, yet they still come back normal. I can't tell my body to show the disease to the tests...I wish I could!! This invisible illness is a PITA!
02-18-2011, 12:57 PM   #75
Cat-a-Tonic
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Sounds like we've got a theme going here. My maternal grandfather also had (and died of) colon cancer. Before I had my colonoscopy, my GI assured me that it would be "very rare" to find colon cancer in someone as young as I am (I'm 31 now, was 30 when I had the scope). So my doc never thought cancer was a possibility, and of course they found nothing in my scope.

Same old and Allie, I know it seems right now like you will never feel "normal" or even human again, but please know that it's possible - even while still undiagnosed! You know me, I'm undiagnosed, and I've been on Entocort since October (my GI just wrote out another script for 3 more months of Ento, woo hoo) and it's changed my life. Before I was on this med, I felt like how you two describe - stressed, depressed, in pain and having symptoms every day, barely able to function. My GI decided that even without a diagnosis, Entocort is mild enough for me to take for awhile so that I can have a few months of feeling human again before we dive back into diagnostic testing.

Allie, how awful that your new doc wants to take away your pain pills! But it sounds like he does understand that you're legitimately ill and that he wants to get you a diagnosis. I guess if it were me, I'd let him do a few tests, but make sure I keep my prescription active with the doctor who wrote it for me and go back to that doc if the new doc does try to take away the pain pills. Do you have a scope scheduled with the new doc? If so, let us know how it goes. Make sure he takes lots of biopsies!
02-18-2011, 01:49 PM   #76
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have you got room for another ?

I've had trouble for most of my life.

It started when I was in my early teens.
I would get awful belly cramps, the runs & vomit at the drop of a hat.

They slapped me in for tests & told me they couldn't find anything.

In 1974 I started going to an Internal Med. Doc. when I got the worst case of bloody diarrhea, complete with body aches & weight loss.

I was in the loo 24/7
he sent me for a lower GI & they made me prep with castor oil.
Talk about spraying gasoline on a fire.

The dx was colitis, so I was on mega doses of prednisone, lomotil & Metamucil.

I had awful burning from the prednisone after a few months & got sent for an upper GI, that showed a big fat ulcer.
So, I stopped the pred. ( just as well, as it was making me a bag of nerves. )

At that time a friend started force feeding me yogurt & I'll be damned if that didn't help.

The dragon dozed for a few years, but has returned with a few evil companions to make life miserable.

I was still using the same Doc. & had a really good relationship with him.
He suggested a trip to a Gastro.

It took 6 months to get in, but I thought relief was in sight.

The first thing he did was a colonscopy, & for some odd reason, he couldn't knock me out.
He actually grumped & acted like it was my fault that I wasn't falling asleep.
After I reminded him it was him pumping the med into my arm & not vice versa, he said now what do we do ?

I told him if he thought I was going to prep again, he was nuts & told him to just get on with it.

3 days later, he did an endoscope & showed me a raw spot the size of a saucer & said he had no idea what it was.

At that point my belly was full ( yes the pun is intended !) of this pompous Gastro & I was so mad I told him it was Dr.s like him that buried their mistakes as I was storming out of his office.

Bright & early the next morning my phone rings & it's the Gastro telling me that I should have a hida test to check the function of my gallbladder.

He said there was a shortage of the hormone they needed for the test & it would take months to get it.

The next day, he calls & said he found some & would book the test for me.

Fortunately for all parties involved, he doesn't do that test.

I had to go back to him 1 last time for the test results.
I know it was just so he could hit my insurance 1 last time.

he told me to go home & ring my Surgeon & make plans to have my gallbladder removed asap as it was only working @ 7%

Instead, I called my Primary & he said under no circumstances should the gallbladder come out as it would get the colitis riled up again.

I've had several gallbladder scans done since then & they all show no stones.

I even went to a Surgeon last July & he told me to leave it in.

This has happened to me 5 times in my life with the runs, lrq pain , joint probs, incredible weight loss ( this time 1/3 of my body weight ) & it's getting old.

Sadly, my Primary has retired & I've had to find a new one.
She knows I'm not well & has been doing everything to get me feeling better.

I have tried everything.
Sue suggested a return trip to the Gastro & I refused to go back to him.
I did a search for a new Gastro in my area & came up with a brilliant Doc. according to my Primary.

He said @ my first visit that the symptoms are wrong for this being gallbladder & when I mentioned my concerns about my credibility he said he knew I was in pain & was going to do everything in his power to get me better.

You have no idea how refreshing it is to walk into the first appt. with a new Doc. to find he actually read your medical records dating back to 1974 before you got there.

So far he's done upper & lower scopes with loads of biopsies & the upper Gi with small bowel follow through.

Just had all my bloodwork done on Tuesday, so waiting for results.

The first thing he suggested was Chrohns, but he wants the hida test repeated just to make sure.

Sorry for the length of this post, but this has been going on for decades.
02-19-2011, 11:30 AM   #77
StarGirrrrl
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I got called into my GI next week (8 days notice) following my Barium meal, so hoping this means a diagnosis is on the cards... I cannot see a test was normal it's IBS/ let's do more tests outcome coming so quickly....
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2006. Tummy issues (more IBD than IBS).
2009 joint pain/worsening tummy issues.
CRP 20-36 2006-now. C3/C4 inflammation markers huge,
2014 IDA & low B12.

June 2014 admitted to Hospital 3 nights as emergency transfused 2 units of blood. Dangerous case of anaemia.
Caught by pure chance!
Cause currently unknown but suspected CD.

Waiting on blood & stool results from January.

Hoping to stop anaemia treatment soon & lower B12 daily dose!
02-19-2011, 11:40 AM   #78
allieinwonder
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Good Luck StarGirrrrl!!
02-22-2011, 10:18 AM   #79
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StarGirrrl, have you heard anything yet? Fingers crossed for you! Wishing you lots of luck and hoping for a diagnosis for you!
02-22-2011, 03:06 PM   #80
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Hi Cat, no still waiting for my appointment, it's this Thursday at 5pm!
02-22-2011, 04:04 PM   #81
Cat-a-Tonic
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Good luck on Thursday! Please let us know if you find anything out. Will be thinking of you and hoping for a diagnosis! You've been waiting a long time for one and certainly deserve some answers and some relief already.
02-24-2011, 01:37 PM   #82
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Hiya, well I can't withdraw my membership of this club just yet lol but suppose I am further along... have started a new update topic
02-24-2011, 05:37 PM   #83
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I had a doctors appointment today too StarrrrGirl...well...I've been rediagnosed with severe IBS. He is calling it "functional bowel disease". He says that since all my tests are coming back perfect that there is just no other explanation for it....I never had my small bowel checked, but he refuses to do anymore tests. I was put on amitriptyline for it, which is an antidepressant. He says the only way he will do more tests is if my symptoms change in any way.

I guess I am out of this club for now, and I guess out of this forum kind of. I still think its an IBD hiding where they haven't looked, but I have run into a wall. At this point I just want my quality of life back, so if the meds work...I'll be happy! It seems like IBS would be a lot less painful and life-changing than this. Well, people make it seem to be anyway. Ugh!!! At this point I think the only way I will get an IBD diagnosis is if I end up in much worse shape at the emergency room.
02-24-2011, 11:54 PM   #84
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Hey guys!

Woke up at 2 am this morning only to dash to the bathroom..... and stay there till 3. lol.
I'm seriously thinking of installing a tv on the floor of my bathroom
I have an upper GI scheduled for Monday. Yippee!
I don't really want crohn's but I have to say I'm really sick of people telling me there's nothing wrong with me. I'M NOT FINE!!! However if they don't find anything with this round of tests I think I may give up. I'm sick and tired of being sick and tired.

Allie! I'm on amitriptyline for "IBS" as well. I haven't really noticed that it's helping my symptoms much but boy it sure does help me sleep . Side affect can be constipation which can help if you're dealing with the big bad D.

Shout out to a fellow Saskatchewanian num1habsfan!!

Best of luck to everyone, Sorry about the rant. Just needed to let it out
02-25-2011, 05:16 AM   #85
allieinwonder
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I'm sorry you had an interruption in your sleep!

Yeah, my GI did tell me it would help me sleep as well. Just hoping it works the magic he says it will, but I have my doubts.

Good luck with your upper GI on Monday!
02-25-2011, 06:22 AM   #86
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Hi ailenwonder, I was prescribed amitryptiline too at the start of this 4 year journey, and it did work and work fairly well for around 2-3 years. I got my appetite back and could actually keep meals in although of course I did still have some attacks. I was very sceptical about it too. It probably stopped working because I do have IBD, after all I think the blood results and WBC scan have confirmed that.
They probably explained it's not to treat depression as such but to relax the bowel. Is there any chance you could find money for private small bowel tests? I think it's just awful they are refusing to test there

Last edited by StarGirrrrl; 02-25-2011 at 06:48 AM.
02-25-2011, 07:07 AM   #87
allieinwonder
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Thanks for the input Star. He did explain it isn't being used as an antidepressant, I actually don't know why I put that in my original post, lol. Even if I can afford it I really have no options in who to go to until I go back to the US. The GI I found is great, and I actually drive 3.5 hours one way to see him, and he is the only person I can see here. If I tried to go private with someone else it would be someone German, which would be a huge hassle with the language barrier. I'm going to try this, hope it works, and if it doesn't my GI will try another medication. The reasons he said he wouldn't test my small bowel is because 90% of IBD patients have the IBD in places that a colonoscopy looks at, including the terminal ileum, and since I didn't have it there he doesn't want to risk more tests. Basically he doesn't want to keep putting time and money into a case where it is much less likely that he will find something. My blood tests came back perfect, which is also why he is stopping. I will definitely persist with more tests if this doesn't work or if my symptoms get worse.
02-25-2011, 10:11 AM   #88
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Join Date: May 2010
Location: Madison, Wisconsin

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I see the Undiagnosed club has turned into the Amitriptyline club - and I'm part of that club, too! I've been on 25 mg of Amitrip for about 4 months now. It helps me sleep and it controls the chronic headaches that I got as a side effect of Entocort, but I don't know if it has actually done anything for my guts or not. I have noticed that it sometimes constipates me but it doesn't necessarily seem to calm things down in my bowels.

Allie, please don't feel like you have to leave the club or the forum. We're happy to have you around - don't feel like just because you've been told it's IBS that you have to leave. You're clearly still struggling and we'd love to continue to support you through your journey.

Highland Anne, welcome to the forum and the club! Good luck at your upper endoscopy on Monday and I hope it can provide you with some answers! And I know what you mean about wanting to install a TV in the bathroom. We're eventually going to remodel our bathroom, and one of the things on my wish list is a small flat-screen TV on a swivel mount so that I can watch it from either the toilet or the tub.
02-25-2011, 01:08 PM   #89
littlemissh
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Join Date: Dec 2010
Location: United Kingdom

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There is hope guys, I was a member of this club for 17 months. Now on meds that are gradually taking effect so hang in there!
03-13-2011, 10:22 AM   #90
StarGirrrrl
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Join Date: Sep 2010
Location: UNITED KINGDOM

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How is everyone doing? BFT was fine and GI even got a second opinion on it, which he is now doing on colonoscopy biopsies.
I have a pill cam on the 22nd and soooo hoping this gives me answers, but trying not to get my hopes up too much. It is exciting and scary all at the same time.
My CRP has finally gone up to 36 which is worrying as it's been stable at 22-25 for 4 years, but in a way pleased it's finally reflecting the changes as i've been alot iller these past 6 months. It was 22 one week and 36 the next and I tell myself surely the pill cam will see this and what my WBC scan found last year (I was hoping for a repeat of that since it's the only abnormal test so far but they vetoed it as an uneccessary radiation exposure).

Last edited by StarGirrrrl; 03-13-2011 at 10:26 AM.
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