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Crohn's Disease Forum » Your Story » Things to be grateful for?


05-02-2014, 09:48 PM   #1
Jesse727
 
Join Date: May 2014
Location: New York, New York
Things to be grateful for?

Hello, this is my first posting on the Crohn's forum. Before moving on, I would like to say that I am heartened by the diligent online support of fellow Crohnies (I just came up with that term as I wrote it...I like it.) Nobody can fathom what living with IBD is like except those that do. I am 25, and I was diagnosed 3 years ago. I have had two surgeries for peri-anal abscesses (dear god, so dreadful. Although, as I soaked my bum in the bath four times a day, I couldn't help but laugh at the absurdity of my situation).

My symptoms mostly revolve around chronic lethargy and abdominal pain. My doctor has advised me to go on immuno-suppresents, but I have been reluctant to take them due to the fact that I want to try all possible alternatives before recourse to powerful pharmaceuticals, ones whose long term effects are dubious, to say the least. (Incidentally, I just had my first acupuncture treatment today, and I feel great!)

Anyway, the reason for my posting is that I have found the experience of Crohn's, more often than not, leads to despair, lamentation, and/or self-pity (an emotion I particularly find distasteful). One way to combat such depressive states is to focus on the ways in which Crohn's actually betters your life. I know it is hard to appreciate in the midst of bloody diarrhea and soaking your bum lacerations, but I wanted to share some examples with you kind folks, and hopefully hear yours, if you have them, as well.

My primary example is that I always wanted to practice meditation daily. I always respected the idea of mindfulness, of being as aware as possible, but never had the resolve or focus to do so. However, it wasn't until my diagnosis that life COMPELLED me to do so. Crohn's has revealed to me how interconnected the mind and the body truly are, as anyone who has Crohn's knows; stress is a killer. Thus, through forcing me to be aware of my body, Crohn's has indirectly forced me to be aware of my mind. I am inspired to be as calm, patient and understanding an individual as I can be, because these emotions immediately benefit my health; not in some vague, inappreciable way, but immediately and viscerally. In this respect, I am grateful for Crohn's.

Given, there are times, especially when my abdominal pain is extreme, that I have "woe-is-me" thoughts. But I try my hardest to focus on the ways in which Crohn's can, and does, better my life.

Please share your experiences as well!
05-02-2014, 10:02 PM   #2
theOcean
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Immunosuppressants are actually secondary to biologics in terms of being "powerful pharmaceuticals", so I actually consider them to be what to go on after 5-ASAs. Especially in your case, since you're dealing with peri-anal disease (I am too), I feel like immunosuppressants would be a really good idea for you. I was treated with Imuran and Humira, and had been on Remicade previously, too. They're really not as bad or as scary as they sound, although I know the side-effects list can be intimidating.

What I like to remind myself of is: if I take care of myself now, it's much more beneficial than taking care of something far more severe later. (Also, the chance of side-effects is honestly pretty low.)

Welcome to the forum.

Because of Crohn's, I've actually met others with IBD who have turned into some of my best friends, and even this site alone has made me feel like I have a huge community surrounding me.
__________________
Diagnosis: Fistulizing Crohn's, 2011 (originally Dx as Ulcerative Pancolitis)
Past Medication: Pentasa, Remicade, Prednisone, Imuran
Current Medication: Humira (biweekly), 100mg 6mp
Unrelated Medication: 36mg Concerta, 75mg Pregabalin
Currently: In remission!
05-02-2014, 10:51 PM   #3
afidz
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Welcome to the forum!
Try not to worry about the side effects of those meds, think about the side effects of not being treated, the scales tip in favor of the meds. Of course do your research and be aware, but try not too dwell on it too much
In regards to finding the positives in this awful disease, like TheOcean said, because I have Crohns I have friends all over the country. Because of Crohns (indirectly) I found my boyfriend whom I will marry one day. It's hard to find any light, and is great that you recognize the need to!
__________________
Crohn's since 2007
15 Abdominal Surgeries since 2008
Severe Non-repairable abdominal hernia
Ankilosing Spondylitis
Inflammatory Arthritis

Failed meds:
Humira
Remicade
Asacol HD
Cimzia
Methotrexate
05-03-2014, 12:12 AM   #4
Jesse727
 
Join Date: May 2014
Location: New York, New York
yeah, I should have mentioned he wants me to go on a combination of biologics and immuno-suppresents...so yeah, it would be intense. And it's so expensive! over 20,000 a year. Wow. I feel so hard for people who don't have insurance...its bad enough to have a disease, you also have to bottom out financially because of it. So wrong.
05-03-2014, 12:17 AM   #5
theOcean
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yeah, I should have mentioned he wants me to go on a combination of biologics and immuno-suppresents...so yeah, it would be intense. And it's so expensive! over 20,000 a year. Wow. I feel so hard for people who don't have insurance...its bad enough to have a disease, you also have to bottom out financially because of it. So wrong.
I know. Makes me wish that they had better plans for it here in Canada for those of us who aren't seniors. Young people get chronic illnesses and need treatment too!

And it may be intense, but it's definitely effective! I managed to get into remission and have been pretty happy about it. If you have any questions about immunosuppressants or biologics I'd be happy to answer them or talk about my experience, too!
05-03-2014, 12:18 AM   #6
Jesse727
 
Join Date: May 2014
Location: New York, New York
Has it helped with anemia/fatigue (if that was one of your symptoms?)
05-03-2014, 12:29 AM   #7
theOcean
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Yeah, it has helped with my anemia actually. Now my hemoglobin is back at normal levels. When I was sick last year my levels were at 50 when they should be 130~140 AKA I was in heart attack range. I still take iron supplements (proferrin) because I still have low ferritin sometimes, but I'm not feeling anything like I was before. Now I'm actually pretty active and even got a personal trainer because I'm feeling so much better physically.

I still have some fatigue, but that's from unrelated sleep issues.
05-03-2014, 05:17 PM   #8
Ali29
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I am so thankful for this Forum - I felt so alone in what was happening to me with no one who could really understand or offer advice based on their personal experiences.

For me Crohn's took away a 30 year career that was highly stressful which I believe contributed to my body's decline. I miss the job, employees, but I too am trying new things like meditation and I downloaded the Yoga Chart from this Forum. Trying a little bit each day. I used to go to Yoga every week and due to fatigue/stress - I quit. As my strength comes back (Prednisone certainly gives me a little more energy) I am going to complete the 30 day Yoga Challenge "Joint Freeing Series" that David (Co Founder) posted - I'm really looking forward to this and becoming healthier mentally with this disease (also praying I can rejoin the workforce one day -
__________________
Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
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