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Nervous Wreck with so many changes

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Ulcerative Colitis
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Posted 1/27/2016 5:08 PM (GMT 0)
Hi I'm new to this forum but I have seen many posts about things I had been looking for answers for myself.

Anyways as the title suggests I've had a lot of changes happen in the past 6 months; I've gotten divorced, I'm still looking for a job (I mean I found a temporary one), not in the greatest of places with my middle sister, my anxiety about my Ulcerative Proctitis was really really bad, like thoughts of killing myself was scaring me (I guess you could call it that because I felt like I'd rather die than go through all this pain with my condition), but it's gotten a little better. It didn't help that my ex-husband wasn't very supportive of my stomach troubles and would blame me when we couldn't go out (long story).

My point is, is that I'd like to get some support here because I do have a temporary job but I was told by a friend that there was a full time office job that had opened up.... but now I'm freaking out because I'm not sure if that company wI'll be lenient enough for me. And, if I don't get a full time job, I feel like I won't ever be able to get a full time job and will have to depend on my future husband for everything which I don't want to do. And, I'm afraid that I won't be able to achieve my goals that I've set for myself and that I won't find anyone for myself that will be supportive of my problems because of it.

I know that there are others that are worse off than I am and I'm trying to be positive but I'm really just freaking out that I won't ever have a normal-esque life for myself.
Do any of you know of a job that I could work from home or something like that?

For my UP (ulcerative proctitis) I just take Miralax (half in the afternoon around 1 and then half when I go to bed) but it doesn't seem to help that I don't drink enough water and I'm guessing that that might be part of why I'm not feeling the greatest sometimes.

Anyways I really appreciate that you guys took the time to read something from someone you don't even know but I really just need support and guidance right now. Along with prayers :/
Posted 1/27/2016 6:10 PM (GMT 0)
while UP can cause constipation (it more often causes diarrhea), Miralax treats only symptom of constipation. It does NOTHING for the underlying inflammation. You lifetime risk of colon cancer with untreated UP is very high.

Do you have an actual UP diagnosis?

I advise treating your UP

What kind of leniency do you need from a company? Sick days?

Post Edited (DBwithUC) : 1/27/2016 5:53:52 PM (GMT-7)

Posted 1/27/2016 6:15 PM (GMT 0)
I was diagnosed in January 2013 with UP and the doctor said that I would need to be on Miralax for the rest of my life. She had given me some suppositories to help with the ulcers. Thankfully I don't have the ulcers anymore but I still suffer from the inflammation. My mom suggested we get Tumeric.

I would like to be able to get a job that would be lenient to let me come in at a later time that day or at least be willing to let me go home for the day or something like that. I want to show that I work hard so that I don't get let go or fired.
Posted 1/27/2016 6:17 PM (GMT 0)
I've also had a colonoscopy and a sigmoidoscopy. The first was when I was diagnosed and the second was when I was starting to bleed again. Bleeding is on and off now for me
Posted 1/27/2016 6:24 PM (GMT 0)
I am curious about the diagnosis too. Did you have a full scope with biopsies and the only part with inflammation was the rectum? If so, you should try to treat it with suppositories or enemas. Those could help you drastically.

I am sorry to hear you've been going through tough times with work and your personal life. While it doesn't help the situation with your health, I am not one to put the blame on those things when considering the source of the UP inflammation. I have had flare ups when I was stressed and flare ups when I was 100% relaxed, it's just the cycle of having an AI illness. On the other hand, being down and depressed is never good, you should see someone, either a psychiatrist or a therapist. Being in a dark place like you've been is certainly not going to help and only positive can come from addressing the depression. Look, having UC, or any chronic illness isn't ideal, but you will have ups and downs. Many people treat it and forget about it for many years. I just saw someone post who was in remission for 15 years! It could easily be you. Please don't think of this as self-defining. You will learn a lot, about yourself, about people (sounds like you already have with your ex), about compassion...

I work from home. I have a computer/technology position. I have to be honest, firstly, it's not that easy to find companies that are open to people working at home... usually the lower positions are considered before high paying positions for work at home. I, personally, had to put in a good year to two in the office before I was able to work at home permanently. I always had some leniency with my company, they are young, the owner is a goodhearted person. Some company's want people in the office, others want people who get work done. I get a lot done. It's a certain mentality. It's difficult with UC. I was always lucky just to get to an interview, being picky about what job I got was impossible. Now, I would ask about flexibility. Some places allow people to work from home one or two days a week, but for a person in an active flare up, that's often not enough. I think you should focus on getting treatment, getting a job, putting in the time & showing you're serious, a hard worker, and there to stay... then hopefully if you're ever in the position where you NEED to work from home, they will understand. At this point, you haven't tried any medication and you don't know that you need to work from home. Miralax would be the worst thing for me when I was flaring. That would send me to the toilet repeatedly. Good luck :)
Posted 1/27/2016 6:27 PM (GMT 0)

Empabu said...
I've also had a colonoscopy and a sigmoidoscopy. The first was when I was diagnosed and the second was when I was starting to bleed again. Bleeding is on and off now for me

Did you see the pathology report? What did it say?

What are the suppositories? You should be using mesalamine supps daily or a few times a week indefinitely. I'd stop using laxatives.
Posted 1/27/2016 6:35 PM (GMT 0)
The suppositories were Canasa and I personally did not see the report. My mother had to go with me so she was the one that saw the report. Although the doctor did say that it was mild inflammation in the rectum when I got the sigmoidoscopy done.

The original diagnosis from the colonoscopy said that they did remove some pollips and they removed I think one pollip from when they performed the sig
Posted 1/27/2016 8:16 PM (GMT 0)
Getting your UP properly treated, so it minimally impacts your life is the best solution. UP requires a maintenance medication, Canasa used indefinitely makes more sense as it treats the underlying inflammation. It's inflammation that causes diarrhea or constipation. I'd make an appointment to see your gastroenterologist specialist and tell him/her that your UP is negatively impacting your quality of life, how about Canasa as a daily maintenance medication?

We all suffer from anxiety to varying degrees because of uc, it causes us to worry about the future, employment, medical costs, relationships and more. So we get it, it's tough and many of us struggle as you do. I can't offer an easy solution to it, but finding an escape when uc bothers you does help (reading, listening to music, meditation, yoga, exercise, etc.). Some of us are on anti-depressant/anxiety medications and some see therapists. You're going through an awful lot in your life right now (divorce, changing jobs, UP) and that'd make even the strongest willed of us struggle, counseling might help.

Work from home jobs are tough to find. I work for a software company, and it's allowed for me. Technology companies are generally more progressive about work from home than most others are.
Posted 1/27/2016 8:21 PM (GMT 0)
I have been feeling like the Miralax didn't really help in the first place but I keep taking it because I don't know what else to do. But I think I have a plan now thanks to you guys and my mother :) I'll probably stop taking the Mira lax as soon as I can get my hands on the canasa and or the tumeric. I really appreciate the help from you guys!
Posted 1/27/2016 10:39 PM (GMT 0)
It does sound like you have an awful lot going on, and sometimes it is difficult to know where to turn. Tackling one problem at a time usually works for me, and as already mentioned your main problem is that you are not treating your UP effectively.

Once you have that under control things will look differently. It does sound like you are overwhelmed and depressed, but as I said take one step at a time.

I take curcumin (Turmeric) root every day in my veggie drink and it has helped me. It is well documented that it is very beneficial for people, you can buy it online in capsule form so that's a great idea!
Posted 1/27/2016 10:43 PM (GMT 0)
Poppie thank you! I've decided to give it a try. I'm going to buy some turmeric root supplement on Friday. Based off of what people have suggested so far, I have a feeling that as soon as I get the inflammation under control, I'll be feeling better.
Posted 1/27/2016 11:16 PM (GMT 0)
maybe i'll sound like Quincy now, but i think you just won't get better without salofalk enemas
Posted 1/27/2016 11:18 PM (GMT 0)
I personally hate enemas and would rather try anything else first rather than enemas unless I absolutely have to
Posted 1/27/2016 11:20 PM (GMT 0)
Hi Em -
You've had a lot of good suggestions here. I am sorry for the UP. My own condition started that way, and I was young, fairly newly married, trying a new profession. I remember the panic!
Please, try the suppositories again and plan to do them on a long-term basis. A lot of us here have found that they help, and since inflammation tends to start at the bottom, they could calm things down a great deal.

I have been on Metamucil since I was diagnosed with UC (1985!) and I find it helps to let stool pass more comfortably. Different folks have different experiences of laxatives and bulking agents, but for me, I am comfortable knowing the Metamucil is basically a food-like substance that both bulks and softens the stool. There are a lot of different options out there now (not so in 1985!) so you might find something else you are happier with.

As I said to someone else recently, since diagnosis I had two children, took up horseback riding, and have had a successful professional life which has involved speaking in public. So although I empathize with your panic, please take heart! And you have found this site, which is even more wonderful!
Posted 1/28/2016 1:20 AM (GMT 0)
Empabu, Do any of you know of a job that I could work from home or something like that?

Best option is to go on short term disability if you have insurance and your doctor willing to support.

Believe it or not there are still some call centers exist ( I am in Canada and assume same in US) that allows you to work from home. Now days companies expectations are high with low pays so not a good idea for long term. So here is the list.

Pizza deliveries, Automobile associations(ex. AAA for us), Home Heating and cooling services, security alarm, few Travel agencies, cable, telephone and credit card companies still exists, after hours answering services for Real Estate, Mortgage and Insurance firms.
Starting your own home based hair style & spa and tutoring business or driving for Uber depends on your medical conditions and situation.
Hope this helps.
Posted 1/28/2016 3:07 AM (GMT 0)
Hi Empabu, you will definitely find support here. I can't give you advice about medication options that may help you as I am a newly diagnosed UCer and still learning :)

Acceptance of my newly diagnosed IBD as a new part of my life has kept me so far from falling apart.

I don't like to overthink, I face each battle one day at a time. I allowed myself to cry, scream and feel sorry for myself when I need to. If I want to have a pity party, I'll throw myself one then it is done. Life is full of curve balls so don't be too hard on yourself. Step sideways not backwards ;)

I don't internalise grief, the mind and gut are heavily interconnected. I can't always avoid the stress in my life but I can do something to manage or minimalise it a little i.e. medication, counselling, meditation etc. It is important for me to seek what ever help I need at the time.

Apart from my GI who diagnosed my UC, I have a few different doctors up my sleeve. Some are wholistic and some aren't.

Empabu, tap into any resource options whether that be new dr/meds, counselling, diet, natural therapies, etc to get yourself on a better track for your employment/life endeavours. Keep a diary of any foods you eat and take note of any changes whether good or bad. Listen to both your mind and gut. Why do placebos sometimes work?

You are in my prayers, I find it helps me too.
Posted 1/28/2016 3:46 AM (GMT 0)
Thank you so much all!
Posted 1/28/2016 9:01 AM (GMT 0)
I know how stressful the job situation can be. I've had several medical leaves in the last 2 years and currently am approved for intermittent leave under the ADA. Did you know that you can apply for a reasonable accommodation under the Americans with disabilities act? I learned about it during my medical leaves when I ran out of FMLA. Essentially you can makes requests to help balance your chronic disease and work. For me, I am allowed 1-3 sick days per month without jeopardizing my job. Ordinarily, I would be allowed 3 sick days in a 6 month period and the 3rd sick day would include a verbal warning. You can find more examples by googling and also how to handle it when applying for a job. Hope this helps alleviate some stress for you.
Posted 1/31/2016 7:05 AM (GMT 0)
Salofalk foam enemas are the best for low down! They have helped enormously over the years and are not that difficult to administer. I was frightened at first but the benefits are tremendous - the foam variety is much easier to handle. If you get the symptoms under control then 1 x week might suffice and keep you in remission best of all. Just take your time and keep trying!

Good luck
Cx
Posted 2/1/2016 1:18 AM (GMT 0)
I don't get the Metamucil remedy? It causes you to have softer stools and go more. With UC, you need to be on a maintenance drug every day. If you are having a flare, you need to be treated for the flare, like with Prednisone or another med. I would insist on something other than Metamucil. My opinion only.
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