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08-29-2015, 04:57 AM   #1
Captain Fox
 
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A place to talk Support Group

About this Support Group

Hi there,
I thought I'd create this group so that members could join together and share their interests or worries; be it about IBS, IBD, Crohn's or a completely unrelated topic all together
Basically, it's just a little corner to vent how you're feeling and meet some new friends who understand!

All are welcome!

Members

admiral, Agent X20's Avatar Agent X20, AJY84's Avatar AJY84, Alex., American Wolf, Brewtowncronie51's Avatar Brewtowncronie51, Captain Fox's Avatar Captain Fox, Caro01, cateva's Avatar cateva, Charlotte., Cheesy79's Avatar Cheesy79, Christi, chronicallypositive's Avatar chronicallypositive, cmack's Avatar cmack, cookie_cat's Avatar cookie_cat, crohns4ever's Avatar crohns4ever, Domesticated_Primate's Avatar Domesticated_Primate, exit4's Avatar exit4, GI Jane's Avatar GI Jane, Gram214's Avatar Gram214, Juulez's Avatar Juulez, LTomes, Megeraldo3, mindyfang, Mondowicked's Avatar Mondowicked, pslieber, Red eat is a past time :), ronroush7's Avatar ronroush7, SamReggins, Soup's Avatar Soup, Tubes's Avatar Tubes, UCNanaMom
08-29-2015, 12:18 PM   #2
Mondowicked
 
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This is a great idea! Just what I need right now. I'm sitting in my room in incredible pain down south, but also stuck listening to my roomate and their new girlfriend flirt, giggle and share other intimate things that I cannot enjoy right now. I know it won't always be this bad, but it's hard to stay positive with the blatant reminder of what I can't do right in the next room.
08-29-2015, 12:43 PM   #3
Captain Fox
 
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I'm glad you think it's a good idea I get what you mean too. It can be really frustrating when there are blatant reminders of what you can't do stuck in your face throughout your daily life. Adjusting to this way of life can be hard but it really strengthens you. The important thing is that you talk about how you feel and acknowledge the things that you can do. The small things matter the most. Besides, maybe you can find a more genuine relationship this way.
08-31-2015, 09:28 AM   #4
Cat-a-Tonic
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I feel like this thread is a great idea. I need to vent a bit in here if that's okay. My body just keeps throwing one thing after another at me. I really like to work out, but it's been difficult/impossible lately. Here's how my past 3ish weeks have gone - first I felt like I tweaked my shoulder in the gym and had some shoulder pain for a few days, so that was the initial thing that kept me out of the gym. Then as the shoulder was just about healed, I developed a new hemorrhoid right inside my anal sphincter and it bled and bled and bled and the blood loss made me light-headed and the hemmie itself gave me a bunch of pain in my anus - seriously not fun and I had to go back on steroid suppositories, yuck. Then, as the hemmie was healing, I caught a cold and spent a few days coughing and sniffling and being dizzy from the weird congestion/pressure in my sinuses & ears. And just as I was recovering from the cold, I got a multi-day migraine with throbbing head pain.

So now I'm recovering from the migraine but am wondering what's next! What do you guys do when you're finding it really hard to stay positive because one thing after another just keeps knocking you down? It particularly frustrates me when these things keep me from going to the gym. I'm having a hard time keeping my chin up right now because I feel like I'm just waiting for the next domino to fall. How do you guys stay positive in situations like this?
09-01-2015, 02:11 PM   #5
Captain Fox
 
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Hey there! First off, I'd just like to take my hat off to you because that all sounds real rough. I can really sympathise with you as I'm also really into my health and fitness. Keeping healthy always use to keep me positive and it really sucks having to take it slow. When I want to be positive I either throw myself into a new hobby (a great chance to try out new stuff), or take a time out in a scenic place. Sometimes it's nice to find a mountain someplace, dander slowly to the top and look out at the world from above. It really helps me keep things in perspective. Other than that, I just talk about it. I hope this helps my friend and keep 'er lit! Life takes guts! X
09-02-2015, 10:06 AM   #6
Cat-a-Tonic
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I wish we had mountains around here, but the nearest mountains are several hundred miles away at least. A new hobby is a good idea - I thought about it and I actually need to get back to an old hobby. I'm going to Japan next spring and I had been trying to learn some Japanese, but it's really difficult, particularly the written parts. I sort of grew frustrated with it and set it aside. I really do want to know how to say and read some things in Japanese, though, so this is inspiring me to get back to studying. I want to be able to say Wakarimashita (I understand) rather than have to say Wakarimasen (I don't understand) when I get there.

Arigatou gozaimasu (thank you!)
09-02-2015, 10:51 AM   #7
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I too have stacking medical issues. I've stopped making plans in advance- literally taking it one day at a time. Even with work, since I'm a community worker, I'm calling clients when I have a bit of energy to see if I can visit that day and doing lots via phone. I'm basically trying to keep my head above water until I don't work anymore (just put in my notice to apply for disability). I also set daily goals for the minimum required to get through the day. Today's: go to my one work meeting, one doctor visit and do laundry since I'm running out of undies). I also do something nice for myself each day, usually something arts and crafty, but sometimes just listening to my favorite song or watching a TV episode. I'm also 'planning' aka fantasizing about an anniversary trip for me and one of my partners for when I'm better enough to go.


09-04-2015, 04:52 PM   #8
Captain Fox
 
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I think that all of you are dealing with things great and you should keep it up!
I understand that it can be quite exhausting sometimes- like today for example. It's my first week back at school for A-levels and between work and friends I'm just so tired now. I'm also going to the hospital a lot for medication and to get check ups and so forth with my stoma nurse. Up until this point I've been super positive and have blatantly ignored the fact that my operation was only 3 months ago but now it's starting to hit me now. I'm just going to keep going, focus on work and be thankful that I'm alive! (My operation was actually an emergency one as I almost died from it all :/ ). Anyway, excuse the rant. I hope you are all well and enjoying life!
09-05-2015, 07:23 AM   #9
Charlotte.
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To me one of the hardest things is when I realise that things get worse again, like today. There have been better days and now everything gets worse again and I don't know to what extend or for how long, maybe it's just a couple of days or it is the flare-up that is getting even worse and if so why? So frustrating that I can't really do anything apart from trying to eat something that does not irritate my intestines too much and stepping back to a higher dose of prednisolone.
How do you handle these situations when you think now it should get better day by day but then all of a sudden it seems to get worse?
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Crohn's Disease: diagnosed 2014 (at 24), symptoms for 10 years now
Enteropathic Arthritis, Sacroliitis, Osteopenia

Stelara; Uceris; Lansoprazole; Domperidone.

Previously: Remicade, Humira, Simponi, Azathioprine, Methotrexate, Sulfasalazine, Entocort, Uceris, Prednisolone, TPN, EEN, different alternative treatments.

Last edited by Charlotte.; 09-05-2015 at 02:39 PM.
09-05-2015, 11:05 PM   #10
Mondowicked
 
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((Hugs)) I keep taking it day by day trying not to expect anything...just dealing with the spoons I'm given each day.

We should all win a special presidential award or medal for dealing with this each day.


09-06-2015, 10:01 PM   #11
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So I'm new to this forum. I have dealing with Crohn's disease for about 5 years. I am 19. Well I always been able to deal with the symptoms I find it so frustrating that starting university I have been very hesitant to be open and patient with romantic relationships. I don't know how to deal with Crohn's and sharing my history with another person. It completely freaks me out and I feel like I'm missing out.
09-08-2015, 06:56 AM   #12
Captain Fox
 
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Hey Charlotte, when it comes to flare-ups the only thing you can really do (in my opinion) is persevere and enjoy what you can. I know it sounds bleak and harder to do in reality but you are definitely capable of it I know I've said it before, but the small things really make a difference.

Hey Sam, firstly congrats for going to university. Secondly, I can relate. When it comes to relationships the obstacles just feel bigger and bigger. However, if it comes to a time when you meet someone and you love being with each other I'd advise you to trust them. If you like each other enough and they care about you they will be patient and try hard to understand. If they don't, then maybe it's not for you? I've found that having a life long disease also has its perks in this area, helping me to build stronger and more genuine relationships with a variety of people The point is, take your time and don't put pressure on yourself to talk about it. When the opportunity comes and they ask and you trust them, then tell them and don't worry. You have a Crohn's story, but you also have a larger, more important story and that's Sam's story
09-09-2015, 04:53 PM   #13
Cat-a-Tonic
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I need to vent a little bit again. I was doing okay for a few days and I had salad for lunch on Sunday and it went fine, my guts didn't punish me for it and it was so delicious and wonderful. Sooo, I got cocky and had salad for lunch again yesterday... and although it was equally delicious, this time it did not go so well. Guts are angry, I'm crampy and I passed a few chunks of undigested lettuce, and my arthritis even flared up a little bit today. Bleh. Not feeling so good.

But, I'm trying to stay positive and something good did happen today. I crochet, I mainly make scarves and blankets. It's just something I do when I'm watching TV, I am sort of ansty so I like having something to do with my hands when I'm otherwise idle. So I had made a cute infinity scarf and donated it to a silent auction at work with the proceeds going to charity. I wasn't sure if anyone would bid on my scarf, but a co-worker did. Then someone else bid on it, and then it turned into a bidding war! Multiple people actually want to win my scarf in this auction, and two people even asked me if they could pay me to make them a scarf. !!! That's pretty awesome. That makes me feel worthwhile on a day when I otherwise just feel crummy.
09-12-2015, 02:48 PM   #14
exit4
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Interesting read on Disability and/or chronic illness:
http://www.huffingtonpost.com/sarah-...ushpmg00000046
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Life is not about waiting for the storm to pass, itís about learning how to dance in the rain.
10-18-2015, 06:31 PM   #15
ronroush7
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I need to vent a little bit again. I was doing okay for a few days and I had salad for lunch on Sunday and it went fine, my guts didn't punish me for it and it was so delicious and wonderful. Sooo, I got cocky and had salad for lunch again yesterday... and although it was equally delicious, this time it did not go so well. Guts are angry, I'm crampy and I passed a few chunks of undigested lettuce, and my arthritis even flared up a little bit today. Bleh. Not feeling so good.

But, I'm trying to stay positive and something good did happen today. I crochet, I mainly make scarves and blankets. It's just something I do when I'm watching TV, I am sort of ansty so I like having something to do with my hands when I'm otherwise idle. So I had made a cute infinity scarf and donated it to a silent auction at work with the proceeds going to charity. I wasn't sure if anyone would bid on my scarf, but a co-worker did. Then someone else bid on it, and then it turned into a bidding war! Multiple people actually want to win my scarf in this auction, and two people even asked me if they could pay me to make them a scarf. !!! That's pretty awesome. That makes me feel worthwhile on a day when I otherwise just feel crummy.
I am glad that something positive happened. As far as the salad, I feel like I struggle especially with raw vegetables.

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Diagnosed in 1990. On Humira, Imuran, Gabapentin, Colestipol, Synthroid, Lialda. Resection in April of 2010. Allergic to Remicade, Penicillin, Flagyl, Doxycycline. Thyroid issues and psoriasis and neuropathy and mild cerebral palsy. Mild arthritis in my lower back.
10-18-2015, 11:02 PM   #16
ronroush7
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I had a stool on Saturday that was black. I have been told that it could be blood. If that were the case, wouldn't there be some irregularity in my blood work?

2
10-19-2015, 01:36 AM   #17
Christi
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So im new on this forum and i were so happy that i came upon this support group lol. I just feel so emotional for a while now i do not know why i just want to cry lol and i dont feel so great my GI did some test and i will be getting them on Wednesday but otherwise i am just doing great , btw i were diagnosed with CD last year :-)
10-19-2015, 01:39 AM   #18
ronroush7
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Welcome, Christi.

10-19-2015, 02:36 AM   #19
Christi
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Hi ronroush, Thank you. I do think they will be able to see it in your blood work but i do not want to give you the wrong answer. Hope you feel better :-)
10-19-2015, 07:27 AM   #20
ronroush7
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Thanks , Christi.

10-19-2015, 04:35 PM   #21
ronroush7
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I have been getting the runaround concerning a calprotectin and an urine test I had last month. Someone on Facebook feels like it could be a result of Obamacare.

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10-21-2015, 11:24 PM   #22
ronroush7
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I was just diagnosed with ibs along with the Crohns diagnosis which I have had for 25 years. At least that it when i was first diagnosed. Sometimes,I wonder if i actually had it before. Anyways, is there a particular thread for ibs if indeed i have it? Best to all.
10-22-2015, 12:58 PM   #23
ronroush7
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Spent most of my waking hours in the bathroom today. I wish there were an easy test the doctor could just scan your whole body and determine what was going on.

10-22-2015, 01:59 PM   #24
Christi
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Hi ron im so sorry i do hope you feel better soon. I have some infection on atibiotics now and i have depression and i do not know how to deal with this im just crying.
10-22-2015, 02:06 PM   #25
ronroush7
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I am so sorry, Christi Sending support and prayers.

10-22-2015, 02:11 PM   #26
Christi
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Thanks ron i really appreciate it, have you ever gone through this? Do you have any advice how i can deal with this?
10-22-2015, 03:06 PM   #27
Cat-a-Tonic
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Hi Christi, a lot of us on here deal with depression and sadness, yes. Myself included. When I have flare-ups, I cry a lot and get very depressed. Some of us on here take anti-depressants as well, or have therapy to talk through the depression - those may be things that you would want to consider if you don't start feeling better soon.

Believe me when I say that these feelings are normal - you have a chronic, lifelong, painful physical illness and that's a really difficult thing to have to live with every day, so it's easy to become depressed about that. Additionally, some researchers are finding that depression is actually a symptom of IBD - that the inflammation and/or altered gut bacteria can play a role in how serotonin is processed in the brain. Literally, there's a brain-gut connection and having a gut illness can cause depression, so the research shows. So, it's completely normal to feel depressed and to cry about this. It's okay to feel this way and a lot of us go through the same thing. We're here for you whenever you need to talk.
10-22-2015, 03:15 PM   #28
Christi
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Thank you so much cat now i know im not alone, i have a therapy session booked for next month , and my doctor said they will likely put me on anti depression meds for a while. Yes its very difficult knowing to live with this horrible disease for the rest of your life, i am trying to stay positive but its difficult at the moment for me to do that. Cat thank you so much
10-22-2015, 03:20 PM   #29
Cat-a-Tonic
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You're definitely not alone. And I know it's difficult to stay positive - for me, it's gotten easier but it's never actually gotten easy, if that makes sense. I hope the anti-depressant medication helps you feel a lot better. Other things can help a bit as well - some people find that things like yoga, meditation, deep breathing can help. For me, I like to exercise when I'm feeling well enough to. Going on a walk outside and getting some sunshine and breathing the fresh air usually makes me feel at least a little bit better. I hope that helps. Please stay in touch, let us know how you're doing and how the anti-depressants are working for you.
10-22-2015, 03:25 PM   #30
ronroush7
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I have found myself just get weepy sometimes, Christi and cat-a-tonic.

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