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Crohn's Disease Forum » Your Story » Professional Patient


02-12-2017, 04:42 PM   #1
Hypocrohniac
 
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Professional Patient

After reading this forum for almost 2 years, I finally committed to joining. When I was at my sickest I only had the strength to use my arrow keys. I have read so many stories, and checking new posts every day has become the norm. I feel like I know so many of you personally!

It is hard to make a long story short, and all of us seem to have had a long journey. We all hurt, we are all tired, we are all frustrated and lots of us are sad.

I am currently a full-time patient, reliant on my husband's income, and the household help of my 2 teenage daughters. I have a folder for each specialist, I carry a list of diagnoses, meds and contact details for all the doctors.

I just got referred to my 3rd Gastroenterologist who is going to try to go through the rigmarole of getting Humira approved. This includes me going off Methotrexate and starting Imuran (you need to fail Imuran (specifically, not MTX)) which he expects me to fail. Sigh. Wait to a few months for it to fail. Wait a few months for Humira approval. Wait a few months to see if it works. Looks like 2017 isn't going to be my year!

I have done a lot of self-diagnosing. Some were actually true. A few were ridiculous. I do have Crohn's disease, Coeliac disease, "Crohn's-related arthritis", Hypothyroidism, Chronic Migraines, Asthma, and I just asked for tests and had Gallstones confirmed.

I wanted to be short so I plan to expand my story if people are interested.

Jen
02-12-2017, 05:39 PM   #2
Jabee
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Hi Hypochroniac:

Love the name! I thought I'd reply because I also have crohn's, celiac disease, and chronic migraines. Everything began after the birth of my third child, and it's been an uphill battle ever since. I am currently on Entocort, developed severe pancreatitis after 6MP so no more of that, and my GI says I'm not a candidate for the aminosalicylates.

It's hard that you have to fail one drug in order to be put on another; are you feeling any better since your diagnosis? What do you use to treat your migraines? I've found that my headaches get worse when my crohn's is flaring. Steroids always stop them completely!

I hope three times is the charm for gastroenterologists!
02-12-2017, 05:44 PM   #3
ronroush7
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I would ask for another opinion. He is expecting you to fail the Imuran ad then it will take a couple of months to get approval for the Humira. If that happens, I would be concerned more damage could happen in your body.
02-12-2017, 06:03 PM   #4
cmack
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Hi Hypochroniac,

Welcome to the forum. You will be a great asset to all of us I'm sure. We all support one another around here. I am also concerned about what damage may occur with the expected failure of meds. Feel free to pipe up any time or even pm me if you like. I'm easy to get along with. Hope you have a good 2017 despite the struggles you face.

Your new teammate,

cmack
02-12-2017, 07:19 PM   #5
Sophabulous
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I also have Crohn's, Asthma and migraines with aura. It's not fun. Sending all my love, none of it is fun for very different reasons!
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Diagnosed severe Crohn's of the Duodenum, Terminal Ilium and Cecum.

Currently taking Azathioprine 100mg, Esomeprazole 40mg, B12 Injections and various supplements. Azathioprine failing so awaiting next steps
02-12-2017, 07:36 PM   #6
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ooh how exciting to get replies! I feel like you are all celebrities.

The new gastro tried to get Humira approved via my Rheumatologist (Dr Hot), but as she doesn't think I have Rheumatoid Arthritis, she said we need to go through the proper channels (for Australia) which I understand. Dr Ace (second gastro) handed me to new gastro (yet to be nicknamed) after the Fecal Protectin, that I asked for, was still high, even though the initial areas of inflammation (stomach ulcers and 2cm of anus) showed mucosal healing. I have a feeling there is small bowel involvement as I have new areas of pain around my belly button. Who knows - could be the gallstones. Anyway, she said it was time for biologics as the steroids (finally down to 15mg) aren't doing enough. She only works 2 days a week, and was worried that she wouldn't be available to monitor me closely enough once I was on biologics, hence the referral to Dr New. Dr New said to stop the 4.8g Mezavant as the Crohn's Colitis was healed, and wouldn't be doing anything helpful - that's 4 less pills a day!

You know when you are given a piece of paper with a body on it and you are asked to shade in the area of pain? I coloured the whole thing in with a sharpie (permanent marker).

I take Lyrica 225mg morning and night for the migraines and any codeine I can get my hands on, but only after the morning poo episodes are over.

Thanks for your concern, but I am in good hands. I mean yes, I am totally freaking out, dying of anxiety that my insides (we call him Eric) are going to succeed in their efforts to kill me, but aren't we all?
02-12-2017, 07:43 PM   #7
cmack
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You are doing the right things. In my opinion. Always seek answers to no end. We all have to struggle with these Doc's who (fortunately for them) don't get it. I hope remission is in your near future.

cmack
02-12-2017, 08:45 PM   #8
cmack
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Jen,

Did this show up in the email?
02-12-2017, 08:57 PM   #9
Hypocrohniac
 
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Nope...I am hopeless at technology. I've adjusted settings again, so we'll see.
02-12-2017, 09:11 PM   #10
cmack
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You can always message me! LOL
02-12-2017, 10:04 PM   #11
Hypocrohniac
 
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Ooh I think I've done it! Could you please reply and I'll see if it works?
02-12-2017, 11:09 PM   #12
aypues
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I would try to specifically get with an IBD specialist for your Crohn's. They exist and can be more aggressive with your course of treatment. Maybe check this site out: http://www.ibdsupport.org.au/resources
02-12-2017, 11:16 PM   #13
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Thank you for the welcome advice! Dr New is apparently the Head of IBD at one of the public hospitals near me. Hopefully this will save some money, as I am paying privately, and have hefty bills!
02-12-2017, 11:31 PM   #14
cmack
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Hello from British Columbia! This is a test
02-12-2017, 11:32 PM   #15
cmack
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Working yet?
02-12-2017, 11:33 PM   #16
cmack
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Jen,

Any luck?
02-12-2017, 11:58 PM   #17
Lady Organic
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Hi and welcome!
the dr telling you Imuran is expected to be a failure is not good. Its very important to be optimistic with whatever treatment we start. Our option are so limited we must believe in every one of them fully! Imuran works for a lot of CD patients, even alone.
I failed methotexate, failed Imuran, but I succeded with cousin Imuran drug Purinethol. When i was prescribed Imuran, it was expected to work since Purinethol worked in the past. But it did not and then Purinethol worked again. I remember a professional in my medical team telling me Purinethol wont work again since Imuran failed... I didnt listen and pushed to have purinethol again, my GI agreed. There is no certitude in IBD. Its trials with every patients. Good luck
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''UC-like Crohn's'' since 2001:
on: 25mg 6-MP (purinethol)+ B12 shots
minor hands/wrists chronic arthritis since 01/2013

Diet: ''IBD-AID'' : http://www.nutritionj.com/content/13/1/5+ organic food only
suppl Curcuminoid extract, Inulin,psyllium, apple pectin, Vitamin D

past meds:
pred 50mg, 5-ASA, cortifoam, Imuran (failed) Purinethol (success) methotrexate (failed CD and arthritis).
02-13-2017, 12:13 AM   #18
cmack
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You are such a nice lady, Lady Organic. I appreciate you. Very much.
02-13-2017, 12:41 AM   #19
Hypocrohniac
 
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No luck, cmack. Thanks anyway

And, yes Lady Organic, I remain hopeful that Imuran works for me. I think the comment was more likely made because he wants me on biologics ASAP and was telling me the procedure required to get it.

Hope is sometimes all we have, but allowing some "wallowing in despair" time works for me. Have a cry. Have a tantrum. Take a breath. Join a forum!
02-16-2017, 12:20 AM   #20
Hypocrohniac
 
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So, I finally got in touch with Dr New, only to find out that he is on holidays, but wants to see me on his first day back, which is the 27th Feb.
I have stupidly been too stubborn to refill my 4 Weekly Pill containers in mini rebellion. Does anyone know if I should hit the panic button because I think I missed 2 weeks of my Folic Acid supplement (5mg twice a week)?
02-16-2017, 01:40 AM   #21
cmack
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Hi Hypocrohniac,

You can get it at the pharmacy OTC. I live in B.C. Canada though so your rules all may vary. It probably isn't a big deal just get some as soon as you can. I doubt there is any panic to be had. Look for foods rich in it that you tolerate. Maybe wikipedia or drugs.com it.

All the best my friend,

cmack
02-16-2017, 01:52 AM   #22
Hypocrohniac
 
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Thanks cmack. I have a bottle of it right next to me, I just forgot to take it as I hadn't filled my weekly containers
03-05-2017, 12:57 AM   #23
cmack
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How are you doing?
04-29-2017, 08:01 PM   #24
cmack
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Hey you. I hope you are OK buddy.
04-29-2017, 08:18 PM   #25
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Finally, an update! I've been in my misery bubble for ages. Still reading everyone's stories when I could. So much has happened, but I'll go for the precis version:
I did start the Imuran - built up to, and am now on 75 mgs. I took myself to Emergency with wicked pain in what I think was my bladder. I had a dr who told me that the head & mind could heal anything - sigh. Nothing remarkable on blood & urine test, so went home. A week later I got the call that Humira was approved - a very big deal in Australia. I didn't know whether to cry, or cry so I did both.
Started Humira loading dose. 9 days later I thought I had appendicitis. Waited a day and a half, then I couldn't put up with the epic pain anymore, and went to Emergency. Yep, acute appendicitis and it's coming out. They were hoping to go in laparoscopically, but there could be complications - I said "and I could wake up with a stoma. Yes, I am a very well informed patient, and I diagnosed my own apendicitis, and I am aware of what may happen". Anyway, woke up without a bag, but when they tried laparoscopic surgery my appendix had adhered to my bowel and they "damaged" it. Had to open me up - I now have two mid-line incisions - I'm sure they will look like train tracks eventually. Took days and days to poo. I was in hospital over the school holidays so was desperate to get home, but the drs were loath to give me any laxatives as they wanted to make sure my bowel was working. Tears. They agreed to day release for Good Friday and I was so excited that I managed a sultana sized poo and was allowed home.
That was weeks ago. In the first week I had district nurses change my dressing - all looked good. Finished anti-biotics on the Wednesday. Follow-up with surgeon was good. He stuck a cotton bud around in it to drain any extra fluid, and trimmed a stitch. By the time I got to Dr New (now called Dr Doey) on Monday it was infected again. Back to daily dressing changes. Except, now there is a gaping hole, about 5 cms deep, which could potentially be a fistula. The local GP made me an urgent follow-up appt with surgeon for tomorrow. More sighing, more tears and more pain. Happy days!
04-29-2017, 08:25 PM   #26
ronroush7
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Finally, an update! I've been in my misery bubble for ages. Still reading everyone's stories when I could. So much has happened, but I'll go for the precis version:
I did start the Imuran - built up to, and am now on 75 mgs. I took myself to Emergency with wicked pain in what I think was my bladder. I had a dr who told me that the head & mind could heal anything - sigh. Nothing remarkable on blood & urine test, so went home. A week later I got the call that Humira was approved - a very big deal in Australia. I didn't know whether to cry, or cry so I did both.
Started Humira loading dose. 9 days later I thought I had appendicitis. Waited a day and a half, then I couldn't put up with the epic pain anymore, and went to Emergency. Yep, acute appendicitis and it's coming out. They were hoping to go in laparoscopically, but there could be complications - I said "and I could wake up with a stoma. Yes, I am a very well informed patient, and I diagnosed my own apendicitis, and I am aware of what may happen". Anyway, woke up without a bag, but when they tried laparoscopic surgery my appendix had adhered to my bowel and they "damaged" it. Had to open me up - I now have two mid-line incisions - I'm sure they will look like train tracks eventually. Took days and days to poo. I was in hospital over the school holidays so was desperate to get home, but the drs were loath to give me any laxatives as they wanted to make sure my bowel was working. Tears. They agreed to day release for Good Friday and I was so excited that I managed a sultana sized poo and was allowed home.
That was weeks ago. In the first week I had district nurses change my dressing - all looked good. Finished anti-biotics on the Wednesday. Follow-up with surgeon was good. He stuck a cotton bud around in it to drain any extra fluid, and trimmed a stitch. By the time I got to Dr New (now called Dr Doey) on Monday it was infected again. Back to daily dressing changes. Except, now there is a gaping hole, about 5 cms deep, which could potentially be a fistula. The local GP made me an urgent follow-up appt with surgeon for tomorrow. More sighing, more tears and more pain. Happy days!
I am sorry for all you have been through. I hope better days ahead for you.

04-29-2017, 08:35 PM   #27
cmack
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Hi Hypocrohniac,

I'm sorry to hear about all the invasive surgery, that sounds really tough to deal with. You can beat this though. Keep in touch, I care about you, and I'm in your corner.


Your friend,

cmack
05-03-2017, 07:31 PM   #28
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Hi Hypocrohniac,

How are you buddy? I've been thinking about your family. I hope things are improving.


Your bud,

cmack
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