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Crohn's Disease Forum » Support Forum » Feeling utter despair


11-02-2016, 12:42 PM   #1
eleanor_rigby
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Feeling utter despair

Hi all,

I've had Crohn's for what feels like forever, but was only officially diagnosed in January 2016. It's basically confined to my ileum. Prior to my resection, I would feel normal but then have a week here and there of intense cramping pains like labour, in the centre of my abdomen above my belly button and I would be basically immobile for the whole week while they occurred, then I'd be fine again. Post-resection for 3-4 years I felt completely normal, never got those cramps and was very well. Then in May 2015 I got the cramps again for a week, then felt normal until September when they hit again.

I was diagnosed in January but since January I have felt unwell every single day until now. I have constant right side pain, fatigue if I try and walk anywhere for more than half an hour, and a general sense of poor wellbeing, however have not had a full blown case of the "cramps" since starting azathioprine.

I just can't believe it because all my test results are normal and my GI has written to me to say my disease is not currently active. I had an MRE scan last month with contrast and was shocked when I received the letter that it was entirely normal! I was certain they would find inflammation/stricturing or even a microperforation. My GI wrote that there is absolutely no evidence of narrowing! I am thinking I should take it with a pinch of salt as I read that DustyKat daughter had a normal MRE and was being operated on a week later for a bowel perforation. I think I will need another colonoscopy (last one was December 2015, which led to my diagnosis) and maybe that will make my GI acknowledge my suffering. She thinks I have major anxiety issues because I keep pressing her to find the route of my problems.

I am on 50mg of azathioprine (I don't know why it is so low, I weigh 50kg). I'm frustrated because I thought there was a good success rate for this medication for the people that can actually tolerate it like myself. I am not able to take any anti-TNFs due to a prior health problem when I was 18, which I believe basically leaves me entyvio (have read this mainly works in the colon so unlikely to help me), and stelera, which hasn't been approved here yet.

I am just feeling in total despair that I have not felt any better AT ANY POINT in 10 months during which time I have undergone 2 months entocort, 2 months prednisolone and 6 months azathioprine
__________________


History:
2nd Generation affected

Symptoms since 08/2006 (age 17)

Emergency open bowel resection after perforation in 12/2011 (age 22) (wrongly diagnosed as burst appendix ). Three years remission following this unmonitored

Diagnosis:
Perforating small bowel Crohn's Disease 01/2016 (terminal ileum, duodenum)
Coeliac disease (age 26)

Meds:
50mg azathioprine (down from 75mg after my WBC dropped)
Gluten-free diet
11-02-2016, 03:05 PM   #2
Cat-a-Tonic
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I'm so sorry to hear all this. Depression is a really common symptom with IBD and it's no wonder you're feeling despair, being so ill for so long. I hope you can find a treatment plan that truly does get you into remission, soon.

It sounds to me like your GI is not very good, if she's not acknowledging your suffering and is blaming everything on anxiety? I'm not quite sure how the NHS works, but are you able to get a second opinion from a different GI? Getting a second set of eyes on your case could help, and hopefully a new doctor will be more caring and less dismissive of you.

As far as other meds - offhand, you may want to look into these: LDN, methotrexate, 6MP. Those aren't anti-TNFs as far as I know (they aren't biologics anyway).

What other tests have you had recently besides the MRE? Bloodwork, stool tests? With the fatigue as bad as that, I wonder if you have a deficiency in something like vitamin D, B12, or iron. I had an iron deficiency last year which caused me horrendous fatigue, and once I had some iron infusions to correct the deficiency, I felt a LOT better. A lot of things can cause fatigue, so that's worth investigating if you haven't already done that.
11-03-2016, 09:04 PM   #3
Aydmen
 
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I'm sorry and I'm sending you hugs. I am having pains and cramps myself, but I have URC. I am on Azietophrine as well, and it's worked very well so far with me, so please keep faith! I changed a bunch of meds since 2009, but Azietophrine has been the best so far. Please please push your GI to take your seriously, it's not like you're faking it. If he/she doesn't, change doctor.

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11-03-2016, 10:50 PM   #4
Trysha
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Hi Eleanor so sorry to hear of your problems
You should be receiving much more help than you are getting and I would definitely seek a second opinion...it is your right.
Does not sound like a good GI...don't. Tolerate it..there are some excellent ones over there
You should have had further investigation...pill cam would be a good idea.
Doesn't sound like you have been properly investigated at all
Get after it as soon as possible do not continue to suffer.
Feel better soon
Hugs Trysha
11-03-2016, 10:52 PM   #5
ronroush7
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I am sorry for what you are going through. Keep pushing until you get some good answers.
11-04-2016, 03:39 AM   #6
Tony H
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Join Date: Dec 2012
Location: Cobh, Ireland
Hi all,

I've had Crohn's for what feels like forever, but was only officially diagnosed in January 2016. It's basically confined to my ileum. Prior to my resection, I would feel normal but then have a week here and there of intense cramping pains like labour, in the centre of my abdomen above my belly button and I would be basically immobile for the whole week while they occurred, then I'd be fine again. Post-resection for 3-4 years I felt completely normal, never got those cramps and was very well. Then in May 2015 I got the cramps again for a week, then felt normal until September when they hit again.

I was diagnosed in January but since January I have felt unwell every single day until now. I have constant right side pain, fatigue if I try and walk anywhere for more than half an hour, and a general sense of poor wellbeing, however have not had a full blown case of the "cramps" since starting azathioprine.

I just can't believe it because all my test results are normal and my GI has written to me to say my disease is not currently active. I had an MRE scan last month with contrast and was shocked when I received the letter that it was entirely normal! I was certain they would find inflammation/stricturing or even a microperforation. My GI wrote that there is absolutely no evidence of narrowing! I am thinking I should take it with a pinch of salt as I read that DustyKat daughter had a normal MRE and was being operated on a week later for a bowel perforation. I think I will need another colonoscopy (last one was December 2015, which led to my diagnosis) and maybe that will make my GI acknowledge my suffering. She thinks I have major anxiety issues because I keep pressing her to find the route of my problems.

I am on 50mg of azathioprine (I don't know why it is so low, I weigh 50kg). I'm frustrated because I thought there was a good success rate for this medication for the people that can actually tolerate it like myself. I am not able to take any anti-TNFs due to a prior health problem when I was 18, which I believe basically leaves me entyvio (have read this mainly works in the colon so unlikely to help me), and stelera, which hasn't been approved here yet.

I am just feeling in total despair that I have not felt any better AT ANY POINT in 10 months during which time I have undergone 2 months entocort, 2 months prednisolone and 6 months azathioprine
Medically I don't know what to tell you but dont give in to despair ,,I found this forum a ray of light over the last few weeks and there is always someone around even just to complain to , you will get through this , you are young and strong , think positive no matter how hard it is ,
hoping you feel better soon .
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emazole 40mg daily
11-04-2016, 07:10 PM   #7
MizzSarah
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Join Date: Oct 2016

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Hi all,

I've had Crohn's for what feels like forever, but was only officially diagnosed in January 2016. It's basically confined to my ileum. Prior to my resection, I would feel normal but then have a week here and there of intense cramping pains like labour, in the centre of my abdomen above my belly button and I would be basically immobile for the whole week while they occurred, then I'd be fine again. Post-resection for 3-4 years I felt completely normal, never got those cramps and was very well. Then in May 2015 I got the cramps again for a week, then felt normal until September when they hit again.

I was diagnosed in January but since January I have felt unwell every single day until now. I have constant right side pain, fatigue if I try and walk anywhere for more than half an hour, and a general sense of poor wellbeing, however have not had a full blown case of the "cramps" since starting azathioprine.

I just can't believe it because all my test results are normal and my GI has written to me to say my disease is not currently active. I had an MRE scan last month with contrast and was shocked when I received the letter that it was entirely normal! I was certain they would find inflammation/stricturing or even a microperforation. My GI wrote that there is absolutely no evidence of narrowing! I am thinking I should take it with a pinch of salt as I read that DustyKat daughter had a normal MRE and was being operated on a week later for a bowel perforation. I think I will need another colonoscopy (last one was December 2015, which led to my diagnosis) and maybe that will make my GI acknowledge my suffering. She thinks I have major anxiety issues because I keep pressing her to find the route of my problems.

I am on 50mg of azathioprine (I don't know why it is so low, I weigh 50kg). I'm frustrated because I thought there was a good success rate for this medication for the people that can actually tolerate it like myself. I am not able to take any anti-TNFs due to a prior health problem when I was 18, which I believe basically leaves me entyvio (have read this mainly works in the colon so unlikely to help me), and stelera, which hasn't been approved here yet.

I am just feeling in total despair that I have not felt any better AT ANY POINT in 10 months during which time I have undergone 2 months entocort, 2 months prednisolone and 6 months azathioprine

So sorry to hear you are feeling terrible. I hope you find a treatment plan that gives you relief. Never feel like a burden to the doctors. If anything I have learned is you need to continue to push them and if they are not willing to look at you with an open mind then you should find a new team of doctors. Having to find new doctors won't be fun but it's better to find someone that will look at you without the cloud of (just overly anxious) above your head. Can't even tell you how many times before I was diagnosed with crohns(7 year battle before even diagnosis) that doctors wouldn't even look at me and would send me on my way with upped anxiety Meds.

Keep fighting and be your own advocate. There's a saying that a squeaky wheel gets the grease. Be the squeaky wheel
__________________
Crohns Disease
2014
Meds: Humira & Entocort
2nd Gen affected
11-04-2016, 07:14 PM   #8
ronroush7
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So sorry to hear you are feeling terrible. I hope you find a treatment plan that gives you relief. Never feel like a burden to the doctors. If anything I have learned is you need to continue to push them and if they are not willing to look at you with an open mind then you should find a new team of doctors. Having to find new doctors won't be fun but it's better to find someone that will look at you without the cloud of (just overly anxious) above your head. Can't even tell you how many times before I was diagnosed with crohns(7 year battle before even diagnosis) that doctors wouldn't even look at me and would send me on my way with upped anxiety Meds.

Keep fighting and be your own advocate. There's a saying that a squeaky wheel gets the grease. Be the squeaky wheel
Agree

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