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Crohn's Disease Forum » Your Story » At the end of my rope


09-20-2017, 12:11 PM   #1
HarleyGirl
 
Join Date: Jul 2017
At the end of my rope

Reader's Digest version...I'm 49, F. Started having issues at 7 years old but mama was as backwards as an Appalachian so other than some pretty gross home remedies, nothing was done. I learned to live with it. You do when even the docs tell you it's all in your head.
I was told it was a gyno issue and after a complete hysterectomy, I had 10 good years with minimal issues. About 2 years ago, I ended up in the ER 3X in a month. Admitting GI said Crohn's or Colitis. Went to the follow up and he acts like he's never seen me before and tells me I might have a virus. For a year and after being on IV antibiotics, I still have a virus?? Two abdominal masses, but it's just a nasty bug??
New GI. He thinks it's Crohn's or Celiac. Ummm...Celiac?? I'm looking at the extraintestinal symptoms and thinking no, but I am not a doc. My follow up from the endo and colonoscopy is in a month. The ICD 10 code for the endo is Colitis, nothing as far as the colonoscopy.
I haven't been able to function like a normal person in almost two years. I lost my business, what litt weight I have, a good part of my hair and if I don't find a job soon, my husband will be next. I spend my mornings expelling bodily fluids from both ends. It's made the job hunt a bit of a challenge.
Thing is, trying to keep him from seeing me like this, he has a hard time believing I am as sick as I really am. I went from being super chick to a lump. The docs won't give me anything without a dx and if he says celiac I still won't have a treatment. Just don't eat gluten.
I'm already gluten free!!
My so is sick of me feeling sorry for myself. I'm sick of being sick and not getting any real help. I don't know what to do.
09-20-2017, 01:42 PM   #2
ronroush7
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Welcome. I am really sorry for all you are going through. Can you call your doctor and ask if there are any cancellations if they can see you sooner? I hope you get relief soon.
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09-20-2017, 02:14 PM   #3
Jabee
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Do you have a good GP with whom you can discuss all your symptoms as well? When it's hard to contact specialists a good GP who is familiar with you can be very helpful. Make sure you tell your GI that you are gluten-free already. I have both celiac and crohn's and my GI (whom I really like) still assumes I sneak in some gluten (my primary symptom when I was diagnosed with celiac disease was intense pain; I have zero desire to experience that again--crohn's pain is bad enough--so I just never eat out or consume processed foods). It wouldn't surprise me if your GI doesn't believe you when you say you are already gluten-free. There's a really simple blood test to check whether you have consumed any. Ask for that so your doctor has the proof you don't eat gluten. Have you had a capsule endoscopy to check your small as well as large intestine? Or have you had any CT scans to look for inflammation that way? I really hope something changes for you and you get some answers soon.
09-20-2017, 02:17 PM   #4
Magnolia24
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Did they do blood work to test for celiac? If I remember correctly, it's a simple blood test. It seems unlikely that it's celiac since you're already gluten-free and in so much pain, but if the doctors keep talking about it it seems good to rule it out. Agreed about trying to get in to see the doctor sooner. In the meantime, have you tried other dietary changes? the specific carbohydrate diet has made a huge difference for me. I hope you get answers and relief soon!
09-20-2017, 02:44 PM   #5
HarleyGirl
 
Join Date: Jul 2017
Thanks for the responses. I have tried to get into the GI sooner, no luck so far. My PCP ordered a Crohn's panel but the results are lost in Obamacare Wonderland and unfortunately, she does not accept our new coverage so I am looking for a new PCP. She was great. Diet...what a quagmire!! I eat healthy when I can eat but every time I turn around it seems what I was told I could eat I shouldn't and vice versa. I had a salad for the first time in a year that I thought was going to kill me before the hurricane. BTW, colonoscopy prep and hurricane prep in the same week are not recommended. Anesthesiologist told me to eat more fruits and veggies.
I haven't been able to access the results of my blood work but the GI said based on it, it was either Crohn's or celiac. I haven't tried SCD yet, but I am willing to give it a go.
09-20-2017, 06:08 PM   #6
Squirrel#1
 
Join Date: Sep 2017
Location: Abilene, Texas
Reader's Digest version...I'm 49, F. Started having issues at 7 years old but mama was as backwards as an Appalachian so other than some pretty gross home remedies, nothing was done. I learned to live with it. You do when even the docs tell you it's all in your head.
I was told it was a gyno issue and after a complete hysterectomy, I had 10 good years with minimal issues. About 2 years ago, I ended up in the ER 3X in a month. Admitting GI said Crohn's or Colitis. Went to the follow up and he acts like he's never seen me before and tells me I might have a virus. For a year and after being on IV antibiotics, I still have a virus?? Two abdominal masses, but it's just a nasty bug??
New GI. He thinks it's Crohn's or Celiac. Ummm...Celiac?? I'm looking at the extraintestinal symptoms and thinking no, but I am not a doc. My follow up from the endo and colonoscopy is in a month. The ICD 10 code for the endo is Colitis, nothing as far as the colonoscopy.
I haven't been able to function like a normal person in almost two years. I lost my business, what litt weight I have, a good part of my hair and if I don't find a job soon, my husband will be next. I spend my mornings expelling bodily fluids from both ends. It's made the job hunt a bit of a challenge.
Thing is, trying to keep him from seeing me like this, he has a hard time believing I am as sick as I really am. I went from being super chick to a lump. The docs won't give me anything without a dx and if he says celiac I still won't have a treatment. Just don't eat gluten.
I'm already gluten free!!
My so is sick of me feeling sorry for myself. I'm sick of being sick and not getting any real help. I don't know what to do.
It's hard. I've had the same situation. I did loose everything and everyone! I had to be rushed 200 miles away for a horrific 6 hour surgery. 5 months recovering in the hospital along with 6 months home therapy. IT GETS BETTER! I'm have an ilieostomy bag it does put a damper on things BUT I've had no issues since. I found out when I lost EVERYONE it was because they were frustrated watching me die and couldn't help. I now have everything I need. Once a solution and right answers were found it was like a weight lifted off everyone. DO NOT LOOSE FAITH! Crohn's is hard to diagnose. It took me 2 years to finally get mine. It is hard to watch someone you love struggling and can't help. I lost my boyfriend BUT once we knew what was happening he stood by me as my biggest supporter and best friend. I know this doesn't help much but hopefully you can see that there is hope. I wish you all the luck in the world!!

09-20-2017, 06:52 PM   #7
cmack
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Hi HarleyGirl,

If you ever need to talk pm me. I have been through hell and back myself. I'll be a friend if you need to talk. I know sometimes talking seems like it's useless, that's how I felt anyway. I encourage you to reach out, either to me, or to others for support. We care about you. I hope things improve soon. Have you had a second (or third) opinion?


Best regards,

Chris
09-20-2017, 07:09 PM   #8
Squirrel#1
 
Join Date: Sep 2017
Location: Abilene, Texas
Hi HarleyGirl,

If you ever need to talk pm me. I have been through hell and back myself. I'll be a friend if you need to talk. I know sometimes talking seems like it's useless, that's how I felt anyway. I encourage you to reach out, either to me, or to others for support. We care about you. I hope things improve soon. Have you had a second (or third) opinion?


Best regards,

Chris
Talking to people with the same situations does help A LOT! It would help not only you but your husband too. My best friend researched and spoke to so many people to better understand what was happening. Lol he knows more than me about Crohn's now! It can feel isolating believe ME! I lived in a small town of 2500 people. So everyone had a dx and a remedy. Sweet but some were down right CRAZY ideas. Seriously though only people with this disease KNOW how it's so difficult to function. It's not only physically exhausting but mentally as well. You WILL get the dx and the right treatment just be diligent and NEVER GIVE UP! My son watched me recover and even got a tattoo saying never give up. That's support! Your family loves you they are just as frustrated as you are.

09-21-2017, 05:59 AM   #9
produff26
 
Join Date: Aug 2017
One thing I've learned with having Crohn's after almost 30 years and 4 operations is NEVER GIVE UP!

If people walk away from you and are not supportive, your around the wrong people and that includes family! I know. I've been there. Not everyone can handle this.

Not sure where you live but you need to get to a big city and seek out an IBD specialist ASAP! Your spinning your wheels listening to these other quacks.

Bigger centers have better doctors and better diagnostic technology. If possible, get to a teaching hospital.

Best of all, they usually take most any insurance.

Hang in there!
09-21-2017, 07:32 AM   #10
HarleyGirl
 
Join Date: Jul 2017
Y'all are awesome. Having vision issues this am, so please forgive the typos. Talked to the hubs about work. We are struggling but he is more concerned about my state of mind than finance. He hates seeing me feeling like I am a big lump and I get overly defensive. It's making it hard for him to help. I have always been a loner but I have never felt as isolated as I have this last year.
I found something yesterday I think will help and will post when I get on the computer. A kind of patient advocate handbook. How to set it up so you can hand your med history to the doc and give them everything they need at their fingertips.
As far as local docs, I couldn't agree more. I am in a very rural area, choices are limited but I it may be time to break out of the comfort zone. I have to get a referral to the IBD clinic in Orlando from my current GI and I will probably have to fight for it, but that's okay. I'm scrappy
I know it will get better. I know it could be much worse. I just have to keep fighting. Thanks again, y'all are the best.
09-21-2017, 07:38 AM   #11
ronroush7
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Sounds like you have a great husband.

09-21-2017, 07:54 AM   #12
cmack
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I'm glad you came and joined us HarleyGirl. I am sorry that you had to have a disease such as this though. It can really be a struggle, I am in a rural area as well and know that I would have been better off in a larger center too. Sometimes that's how things are and it sucks, I know how it feels. I sure hope you are able to go to the clinic in Orlando, that sounds promising.

I think you have what it takes deep down inside to beat this thing and being scrappy helps. I think on this forum most of us have had to force ourselves to toughen up and fight this ugly disease, sometimes it's easier said than done though hey.

I like your attitude, I think it will serve you well. Just remember that we all stick together around here, there is strength in numbers. I have really found a benefit from the support this forum offers and I hope you will too.

Last edited by cmack; 09-21-2017 at 08:17 AM. Reason: typo
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