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CTBarrister
Lately, even before I got the bad news on my MRI Enterography, even before I got the bad news on my pouchoscopy, I found my head filling with far more negative thoughts than usual. I have struggled with IBD for 40 years now and have dealt with many ups and many downs through these years, and feel like I am generally a pretty strong person.

I don't know if it is just a lot of negative thoughts or depression. I will tell you guys what has been going through my head and I will let you be my judges:

1. I got statements on my IRAs the other day and looking at them, I said to myself, "this is a joke. I am never going to see this money. It's either going to be withdrawn to pay my medical bills at some point in time, or else if it miraculously isn't, it's not even enough to carry me through more than a few years of retirement, assuming I am ever able to actually afford retirement, which is a huge question mark."

2. I read a story about a week ago in the local papers about a guy about my age who committed suicide by laying down on the train tracks and allowing a train to hit him, allegedly due to medical problems. In the past I never really thought twice about it if I read such a story. Now I read a story like this with a lot of compassion, and I think about how hopeless a person must feel about their medical situation to think all is lost and want to take their life. Please note, I am NOT thinking about suicide as a solution to my own issues, but I am just starting to think a little more compassionately about others who have chosen this course of action.

3. There is a big joke in my family having to do with me not being an animal person. All my close relatives have tons of pets, dogs, cats, birds, you name it, but I am the one person in the family who is just not an animal person. And my cousin has this joke that in everyone's will they leave their money to me with the catch that I don't get any money from them unless I adopt and care for their pets. So we had a big family gathering last night and my cousin, who is about 10 years older than me, mentions this at the dinner table and I shot back at her that maybe everyone in the family should not count on me outliving them and not predeceasing them. And objectively speaking I would say it is a good shot that I do not outlive my healthy 59 year old cousin who is 10 years older than me.

4. I also worry that I am not going to be well enough to take care of my elderly parents who live in Florida and are back visiting the family in Connecticut, for what my parents say will be the last time because travel has become very hard on them and my mother in particular. She has very bad arthritis.

5. I have trials scheduled in the next few months and I wonder whether in good faith I can commit to doing everything that is needed to prepare for and do the trials and giving 100% as I must. I wonder whether I will have to give up my career.

6. The situation with health insurance in the USA has, increasingly, angered and frustrated me. I think about moving to another country, like Canada. I think about the steep financial penalties for being sick and not having insurance coverage and the expense of insurance coverage should I lose my job. My job drives home these issues every single day since I am dealing with personal injury clients who have no insurance to pay for the treatment they need. I hear stories about people going to the hospital, and specifically telling the hospital not to send records to the primary care doctor because they do not want the doctor to know. I think about medical bills being the #1 cause of bankrupcties in the USA. I wonder if I will ever have to file for bankruptcy due to medical bills, even though my current credit rating is 804 according to the 3 credit reporting agencies. I wonder whether all the hard work and all of the timely paying of my bills and the 804 credit rating gets washed down the drain if I have to have a few more surgeries.

7. I wonder about the toll taken on my liver, and the rest of my body, by years and years of consuming antibiotics, anti-inflammatories, anti-spasmodics, etc. My eyesight has noticeably worsened in the past few years, and I wonder whether this is due to age only.

These are just some of the negative ideation I am having. It's become more and more lately and harder and harder to chase these thoughts out of my head. What do you guys think? Do these thoughts creep into your minds as well? How do you deal with them?

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KangaRoeKangaRoeMember
I had a 2 surgeries in 2009 to repair my pouch and I had overwhelming medical debt from the 2 surgeries. I had to file for bankruptcy, my home was saved, I am broke, but most important I AM STILL HERE.

It is natural and normal to worry about being ill and how it will affect your financial and personal life. But I want to tell you I have been through all of your worries in the last 3 years, I am happy and adjusting to everything becasue I AM STILL HERE.

Please don't hesitate to PM me. You know me. We have talked about how we had our original operations at the same time and by the same surgeons at Mount Sinai.

I deal with it all by making music and art. I also do music therapy for individuals with special needs. I am positive I am getting more therapy than the people I am doing the music therapy with.

KangaRoe
KangaRoe
Last edited by KangaRoe
fqfqMember
i think all these fears are normal and we each go through some level of this thinking with different things in our lives. i think more compassion is great, a fortunate "side effect" of everything we have been through. best suggestion is to have an outlet, a channel, a group of friends, comedy club, volunteering, gardening, cooking, reading something light and funny, runner's high, whatever makes you happy and minimizes those fears...even for a short while. The thoughts and fears can come back...let them. Have a means to remember the passions, the joys, and the comforts as well as the fears, anxieties, concerns.

financial issues are definitely real. thinking about the future is good so you can prepare.

i love this board, but i know when i spend too much time on here, i think and overanalyze everything. having balance is key. balance the store about the guy on the train track with a silly lighthearted story.

i watch a little bit of news with a lot more mindless crap TV Big Grin

and i remember there is only so much in my power, in my control. after that, i can just make the best and enjoy what i do have.

...And who I am.
.
fq
skn69skn69Member
Being one of those people who has lost it all to my medical condition (family, friends, my job, my home, my independance, my health and my carreer) I understand how you feel...the worry of the future is about as natural as it can be but you cannot allow the future to eat up today...life cannot be lived backwards and as a person who, once my health issues were finally under control and my life was on track got run over by an inconsiderate driver (going the wrong way on a one way street and hit me as I was crossing on my green light!) I realise that we have absolutely no way of controling the future or even planning for it.
Live the best that you can with whatever health that you have, save for what you can and enjoy whenever you can. Life is much too short!
Then try to find solutions to what will be. There are very cheap over 55 communities in the south that make selling one's norther home and flying south for good worth the while. I lost my Paris home to my illness but plan to finally retire in about 10 or 15 yrs in Fla where life is cheap (cheaper) and winter boots are not needed. It is a compromise because I will never be able to afford to fly back here to Europe but at least I will be safe (?).
Don't waste today. You don't know how many you have left.
Sharon
skn69
suebearsuebearMember
Take a long look around this board and you will see that many have it so much worse than you do. You CAN work, you have a good paying job, you have medical insurance. And you seem as if you have a high quality of life. If you want to throw yourself a pity party for those fears you have for the future, that may, or may not, come true, then do it. But count your blessings and be grateful for what you have today.

Try getting some exercise. Exercise boosts endorphins and lifts depression.

Sue Big Grin
suebear
CTBarristerCTBarristerMember
I can work, have a job and have medical insurance now. Those things can all end very quickly and they will end quickly if I have another week or weeks like I did last week where I was checked out mentally most of the week at work, at social activities and at family get togethers.

I am not throwing any pity party, I posted what my honest feelings were. If you think so, so be it. I never had this kind of post before, and my head is not normally clouded with these kinds of thoughts, but this week, it was. I just wanted to know what others on this board do to chase these thoughts away and out of their heads. I never attempted to portray myself as having it worse than anyone on this board, and if you have read my posts, I have often stated the contrary. I also do not view this board as a competition to determine who has it the worst, and then reserving pity or sympathy only for those who are deemed to be the worst off. We are all here because we have some issue(s) and I do not understand why you would attempt to trivialize my issues. I just want to know how everyone else combats these thoughts.
CTBarrister
Last edited by CTBarrister
CTBarristerCTBarristerMember
KangaRoe,

I am worried that I will end up in the same situation, having to have more surgeries. My insurance company may not cover it if I see someone at Mount Sinai. I am scared to have any kind of bowel surgery anywhere else. I am potentially facing the same type of situation. I suppose I would dip into my IRAs if I had to, to pay for the surgeries, but then I am going to tap the IRAs out and there will not be anything left for retirement. Which means I will be working until I drop dead, if I somehow manage to keep my job through all of this. I will not survive very many more mental checkout weeks at work like I had the last week.

By the ways, music got me through the darkest days after my step 1 at Mount Sinai. I posted this once before, but at the time I had my worst complications after step 1 in 1992, I was inspired by Anthony Kiedis and the Red Hot Chili Peppers song "Under the Bridge", which was about his overcoming heroin addiction. The song was a hit at that time (spring 1992):

http://www.youtube.com/watch?v=GLvohMXgcBo
CTBarrister
Last edited by CTBarrister
CTBarristerCTBarristerMember
quote:
There are very cheap over 55 communities in the south that make selling one's norther home and flying south for good worth the while.


Sharon, I am not sure what communities you are referring to, but my parents live in Bradenton, Florida. They informed me that this trip to Connecticut, to visit me, other relatives, other friends, and former neighbors, will be their last. There was a lot of implied pressure in my conversations with them to visit them in Florida more frequently than I have. At this time, apart from my cousin and her husband who also live in Connecticut, I am all that my parents realistically have as someone who can care for them. So constant thought has been given to me ultimately having to move to Florida to care for them. This is not so easy to do as you may think. I am only licensed to practice law in Connecticut, New York, and Mohegan Sun Casino Gaming Disputes Court, and Florida does not allow wave-ins as other states do. You have to pay several thousand dollars to take a bar review course and hope to pass their bar exam. Apart from that, all my clients are here in Connecticut. If I went to Florida I would have to basically abandon a successful practice in Connecticut and start from scratch in Florida. More realistically, in order to get a job in private practice, I would have to work as a paralegal or a law clerk, a major step down in pay from where I am right now, and jobs I would be viewed as being overqualified for. Most firms when they hire paralegals like to train them in their own way of doing things. They do not want an old dog whom they cannot teach new tricks to. This is the way things shake out.

That basically rules out private practice, which is what I am in right now. I would have to go and work for an insurance company or the government if I moved to Florida. Those would likely be my only two options. The truth is I would prefer to stay in Connecticut and continue my current job, but the reality is that this not likely to happen beyond the next 5-10 years. This is an issue totally apart from my health concerns, yet it weighs more heavily on my mind now because of my own health concerns.
CTBarrister
Last edited by CTBarrister
samantha1803samantha1803Member
Hey DJB,

I have often thought of you as the one person that has been living with UC etc nearly the same exact time frame as me. I was dx'd in 1971 at age 8. I did't have my surgery until 1998 because I couldn't take time out from my career AND because I truly believed I would get better. So,I just stayed on high doses of prednisone so I could keep being all things to all people. Sadly I couldn't keep going. Also my pouch surgery was not very successful so I had pouchitis chronically up until recently. I did lose my career which was heartbreaking but I have finally learned for the most part to be the person I am now. My kids are older so they don't really need me much anymore and my illness is viewed as a broken record to the few people I have left in my life. 40 years is a REALLY long time to be sick and carry a load like you/I have. I think there is a huge difference between a pity party and trying to envision life if the bottom falls out. I am not saying it will, but it can. I was married for 18 years to a lawyer that practiced civil litigation and I know first hand that you cannot just pick up and move. One thing that changed in me is that people sort of had to start working around me,my life and my illness if they wanted their needs filled by me. I think it was harder for me than for them, but sometimes something has to give because there is no choice. I don't know if I am making a connection for you but I will say that all the abilities and gifts you have that have gotten you where you are now will most likely keep carrying you through. Try not to let change scare you. Someone else said on another post that you/they are still here--it is true and it is great, it just might be different than you expected. I have been let down by virtually everyone I thought I could count on in my life but amazingly I am doing really well because I have me. And you have you! You don't survive a 40 year sickness as some kind of wimpy helpless person. You simply poop ALOT and figure out what to do next! Having the only life you know as one that mainly consists of overcoming adversity you usually come out of hard times just fine and if you are like me usually better than before.
samantha1803
skn69skn69Member
DJB,
I meant after your retirement and not before...as long as you are strong enough and healthy enough to work and live up North then do so but once you retire...Florida is a real option. The over 55 communities are plentiful and appartments can be purchased for very reasonable prices. A bit macabre but they are being sold fast and cheap lately because the older generation is leaving us fast. A friend of mine just sold her mom's condo (1 bd, 1 bath) for 15,000...I cannot even get a telephone booth in a bad part of town in France for that!
Having parents there too, I understand your concerns. I do know that there are some interesting medical insurances down there (not sure if all policies are national or if there are State insurances as well) that cover more than I could have ever imagined. I know that both my parents have serious concerns and appear to be extremely well covered. Beyond anything that I could have imagined in the U.S. So maybe it is a question of States, policies, companies etc...you probably know these things so much better than anyone but the fact that they have such good coverage with a fixed income leaves me hope.
By the way, I use climbing stairs (can't really run), exercise in general and music to get past the worst of it...plus a good cry.
Sharon
skn69
CTBarristerCTBarristerMember
Samantha,

It sounds like we are the same age and have had UC for almost exactly the same time frame. Your post is very helpful to me in analyzing some of my own thoughts. 40 years of IBD and the associated ups and downs is a long time and I suppose I have acquired some emotional survival skills. Probably, if some IBD board existed in the past, I would have had posts like this one every few years. I recently joined a CCFA support group and just talking to others who have IBD was somewhat helpful. In the past, when I had negative thoughts, they were not quite as pervasive in my head as they are now. I think maybe my life is just a little more complicated than it was in the past, but on the other hand, I have also acquired life experience skills I did not have in the past. And I do have me and the history of having soldiered through 40 years with the disease. I am going to have to keep marching forward. I obviously don't have any choice.
CTBarrister
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N notsotoughMember
I am sorry that you are finding it all so difficult at the momnet. I have read so many of your posts in recent months and saw a very strong resiliant man. However I think we can all relate to difficult moments when contemplating the future. It is good to talk about it all because many people can not understand the problem. We all have a chronic disease and have had a surgical solution to assist with part of the problem but we are not 'fixed'. Outsiders do not see that part of the problem and we all know that no one likes a moaner. But you can moan here on this site and we understand. The future is unknown and good things can and do happen that can counterbalance more uncomfortable events. Glass half full!!! Keep strong. Will be thinking of you
N
N nbmMember
DJB
I admire how you have handled chronic pouchitis for years and the advice have offered others facing similar issues. I am sure it is difficult to be confronted with these new issues. To have increases concerns anot meeting your parents needs understandbly adds to yor stress. I don't think it is ever helpful to tell someone that "others have it worse" and really this is a board where people shoudn't have to worry about being criticized for Sharing their feelings.
For me I struggle most with negative thoughts when I don't what course I am taking. Hopefully, you will feel better when you and your dr. Have the full picture and a plan in place.
N
KangaRoeKangaRoeMember
"I am worried that I will end up in the same situation, having to have more surgeries. My insurance company may not cover it if I see someone at Mount Sinai. I am scared to have any kind of bowel surgery anywhere else. I am potentially facing the same type of situation."

That was my situation but I am going to send you some very detailed information that is going to ease your fears.
KangaRoe
T TwilightMember
I have had problems with negativity for awhile, most of it having to do with work related stress and it got to the point I got some help. Went to see a psychologist and was diagnosed with dysthymia and was put on Lexapro, which has helped. I really felt better talking to a professional and tho I'm not being seen on a regular basis, I can always make an appt if I need to. Trying to be healthy, eat right and exercise doesn't always cut it, sometimes after all we've been thru and are going thru we need a little something extra to feel positive.
T
CTBarristerCTBarristerMember
Twilight,

I actually feel that just talking about these issues is, for me anyway, somewhat therapeutic. Sometimes getting my thoughts in writing and getting input on them helps bring about some clarity in my mind, and this thread has been helpful in doing that.

I should mention that I also joined a local CCFA support group in Connecticut and went to a meeting about a week ago. I am the senior person in the support group as far as both age and longevity of IBD. Seemingly, most of the other members are in pretty good shape as far as management of their disease and mental outlook on things. I have been in other support groups and this one is a pretty resilient group. It's more of an exchange of information and ideas about IBD and treatment of IBD, diet, exercise etc. and to a lesser extent focuses on managing IBD-related stress, although that topic did come up as well. I found it helpful just to talk to the others. We have two members who have UC less than 10 years and they are staving off surgery with Remicaid and seem to be doing well with it. Since Remicaid may be in my future, it was helpful for me to talk to them about it.

You might want to join a CCFA support group as well.
CTBarrister
CTBarristerCTBarristerMember
elooney,

I had to have J Pouch revisions in 1998 and 2000 because a septum developed in my pouch, and I was having stricture like symptoms. In those days I had insurance which covered 80% of out of network surgeries so I only had to pay around $4000 out of pocket for those surgeries. I am worried that the narrowing or stricture at the pouch inlet will lead me to need a similar surgery if this inflammation and thickening of the bowel cannot be brought under control. At the moment we have not yet determined what is causing this problem with the fecal stasis above my pouch. It has been an issue for some time because in 2008 they first saw ulcerations above my pouch and at that time my pouch specialist mentioned to me a possible issue being caused by "backwash of stool." The Ct Enterogrpahy in 2008 did not show the same issues we are seeing now so something has gone wrong in the past 4 or more years. In the past 2 years the inflammation has increased rather dramatically. Keep in mind, from 1992-2008, no problem was seen above the J Pouch and the inflammation at the inlet was very mild.

If the pouch is not functioning correctly or is not mechanically emptying like it should be, and that is what is causing the problem, it will likely need to be fixed surgically. I would only have surgery at Mount Sinai and financially, it would be a killer, because this time around my current insurance will not cover that group of surgeons.

Of course if I have to have an ileostomy, that will be another surgery as well.
CTBarrister
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F fisherMember
I think I understand what you are going through. I was diagnosed at age twelve and I'm 45. I had the jpouch done in late 80s and my pouch failed about three years ago. I now have an ostomy but I'm still having problems that don't allow me to function properly.

My parents are in failing health. My sister lives near my parents so she helps out but they have don't always get along. Plus i have two kids i feel a tremendous amount of gulit at not visiting or living closer. We live on opposite coasts but physically there is only so much i can do so i live with the guilt.

Flares and subsequent surgeries have ruined two careers. I was a successful screenwriter at one point but then got sick for a year and never made it back. I'm a lawyer so I went and got an llm in media law to start practicising again. And got sick again.

I think the most painful thing for me is having to face the reality of having so little control. It seems the harder I work the quicker and more violent my body reacts in terms of breaking down

I personally think most of us have forms of PTSD as our lives are filled with trauma. I'm learning/trying to live in the trauma as best I can. I have no answers I just wanted to communicate a sense of empathy. I just feel the reality is our lives are hard.
F
CTBarristerCTBarristerMember
fisher,

I think your post nailed the root of my problems and the root of why the negative thoughts have swirled around in my head so much in recent weeks. CONTROL. The loss of control over the future, the uncertainty of knowing what my physical condition will enable me to do, from trials scheduled in the next few months to supporting my parents in the coming years when they need it.

I am the kind of person who feels strongly a sense of duty to my parents for myriad reasons that go beyond the usual ones. This sense of duty exceeds my sense of duty to my firm, to my clients, even to my career here in Connecticut. I was not happy when my parents decided to move full time to Florida, but they did so largely for reasons related to my mother's health. I have realized for some time that I may ultimately have to move there too and when that time comes, it will not be easy to do so, even if I am in good health, because all of my life is here and I have nothing there. The specter of being held back further from making a potentially difficult transition and adjustment by health and insurance issues has been dodging around in the shadows of my mind. It inhibits my sense of control over the situation and adds so much uncertainty.

My parents have visited Connecticut the past two weeks and although both are in relatively good health, they have become frail. There was a seeming recognition of this when they told me it's the last trip they will make back to CT. It's just too hard for them. It has kind of added to the pressure I feel.
CTBarrister
J Jpouch8888Member
Have you thought about speaking with someone such as a therapist? I think that may be a good idea as letting out of these frustrations and learning how to cope with them may really help.

Sometimes insurance or companies cover several free visits. Something to think about - do not let the stigma of "therapy" prevent you from taking care of the benefits. I am sure there are those out there who specialize in medical issues.
J
CTBarristerCTBarristerMember
quote:
Have you thought about speaking with someone such as a therapist?


No, because unless the therapist also happens to have IBD or a J Pouch, it would not be of any value to me. The lack of understanding of the medical issues involved would prevent anything meaningful from being accomplished - it's a dealbreaking roadblock based on past experience. Most people I have met, even well educated ones, do not understand the gray areas created by the disease unless they have it. Mental health professionals do not have unlimited time. They slot appointments every 45 minutes or an hour. I don't want to spend 2 or 3 sessions educating that person about IBD and my very complex medical issues, and then keeping fingers crossed and hoping they get it. I would rather start out with people who get it. That is why I am here posting on J-Pouch.org.

If you know of a therapist who has a J Pouch, I would consider it. The group leader of my CCFA support group has a J Pouch and in my opinion is more qualified to act than anyone else in a professional setting without one.
CTBarrister
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KarbearKarbearMember
I think a therapist who specializes in chronic diseases is a great source to help you through this time. I have been seeing once since shortly after my surgeries when they didn't work as planned and I felt my life was crumbling around me.

It took the first appointment to educate him on the biology. I then gave him some great sites to visit, this being one of them, to get more information on where I was coming from. Though he might not always know what is meant by my test results and therapies, he is great at helping me sort out the emotions that come with them. Maybe your CCFA leader can put you in touch with someone, but I found mine through google search.
Karbear
SpookySpookyMember
I have to agree there. I briefly saw a therapist several months after my emergency colectomy. Not to rehash it all, but following my emergency surgery I had a lot of complications. I continued to have interintestinal manifestations, and had problems gaining and maintaining a normal weight, my hair was falling out, etc; I ended up developing lot of anxiety about the state of my health, uncertainty about my future, the loss of many of my usual activities, the stress of constantly going to medical appointments and feeling like I wouldn't be able to live a normal life, etc, etc. I wasn't sleeping well and my work performance suffered. In retrospect I probably had a little bit of PTSD due to the fact that I was acutely ill and had emergency surgery, though I was never diagnosed. Anyway, I was referred to a therapist, who, while generally kind, was completely clueless about IBD and chronic illness for that matter, and completely brushed off any health concerns I had. I felt she wasn't listening to me; she kept trying to get me to refocus on other areas of my life that she thought might be the "real" source of my anxiety. I was kind of offended by the whole thing actually, and left feeling even more marginalized. While the sessions were occasionally okay simply as place to vent (rather than constantly ranting to my family about my concerns), I truly found the whole experience more frustrating than helpful, and I was very candid in telling my GP this after the fact. I admit the therapist did make an effort to try to educate herself a bit about ileostomies and IBD, but overall she wasn't very understanding of what I went through. Eventually I realized it just wasn't going to work out, and I cut the sessions short.

As I've said in other posts on this subject, I'm not trying to dissuade people from getting help if and when they think they need it, but it's of benefit to find a therapist who has an understanding of IBD and related surgeries, or failing that, at least someone who has experiences in counseling for chronic illness. Otherwise it could end up being a waste of time, and like me, you might leave feeling more frustrated than before you started. So make sure, anyone out there looking for counseling, that you request a therapist who has experience in such issues. Just my two cents.
Spooky
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suebearsuebearMember
I agree, any therapist trained or experienced in chronic illness can help you. You don't need a therapist with IBD. Part of your past problems might just have been that you and the therapist didn't connect, that happens to everyone. You might have to go to 2-3 different therapists to find the one that you connect with. This is not uncommon.

I had great success with a therapist. I made a list of 10 therapists and called each one and interviewed them over the phone. I had about 5 questions to ask to taper the list down. Four of the therapists on the list never returned my call, the rest did and the one that gave the best answers to my questions got my business. She was amazing and was able to help me when my UC was at its worse.

You might just need to look at this differently and not put so much weight on past experience.

Sue Big Grin
suebear
CTBarristerCTBarristerMember
Thanks for all of your responses and suggestions. One thing that is somewhat ironic is that one of my best friends from high school is now one of the most well known and widely regarded psychiatrists in the State of Connecticut, who ran a department at a large psychiatric hospital and is now in private practice. His specialty, however, is "dual diagnosis", meaning a diagnosis of mental illness combined with substance abuse. When I last got together with him and other mutual friends socially, although I did not discuss my own issues with him, he joked with me that I could not afford his services should I ever need them.

I am going to go through the local CCFA and see if there is a therapist they can recommend specialized in IBD. However, I also think some positives have come out of starting this thread and knowing others have dealt with the same issues in their lives.
CTBarrister
LG little greenyMember
DJB,

Firstly, I would like to say I admire you for sharing your personal thoughts and feelings. I know that is a hard thing to do, especially in such a public forum. Secondly I would like to point out that there is hope and that these feelings are not permanent. It is not a matter of "getting over it" or "being grateful because other people have it worse than you". I don't know you personally and therefore I am hesitant to give you medical advice. I do however, have a strong sense that you might be experiencing some anxiety or other mental health issues as a result of your circumstances . I strongly recommend that you talk to a health care professional about these thoughts as they appear to be interfering with your ability to have a positive quality of life. There are other health care professionals other than psychiatrists. You may even be able to connect with a social worker or occupational therapist as they can help you with the financial piece (including finding funding sources). One good book to read (if you can find it in the library) is called "Mind over mood" I found it to be an interesting read. Sharing your thoughts with friends and family is also useful, if you feel that they have the level of support that you need.
LG
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AllyKatAllyKatMember
DJB
Your post hit home. I am always sick, if not my pouch it is something else. I worry too about my medical bills and insurance costs. I had to stop working, sold real estate, it was getting too much. My husband will never be able to retire, and as much as I love the warm weather and lower cost of owning a home in the south, I will always need to be near NYC cause of all my pouch and other health issues. What has hoped me is medication, Lexapro and talk therapy. My therapist specializes in chronic illness. I found her thu my cancer doctor. I also try and take one day at a time, which is hard. Funny you talk about not outliving your relatives. I talk that way too and to my sadness I just lost a healthy cousin unexpectsntly so you never know what life will bring you. Your posts have always been inspirational in your fight with pouchitis, your stronger than you think. I'm sure this will pass.
AllyKat
Kline84Kline84Member
DJB I can definitely sympathize with the worrying and negative thoughts. When I first got diagnosed with UC I had just had a son and I was worried about working and providing for my family especially since I did not get a college education which means I am stuck with more labor intensive jobs. I had no knowledge about the disease and didn't know if I could ever work again let alone if I would be around to see my boy grow up. When I had a bad stressful day all I had to do was look at a picture of my son or play with him and his smile would cheer me up for the moment. I started looking at life a little different and instead of worrying about the future I decided to just enjoy the present. Since I have had my takedown it has gotten easier as I have relised that I can still work and live a fairly normal life. Sure there may be unforeseen problems down the road but I'll deal with them when they get here just like I did when UC hit me. As long as I can feel the sun on my face and take a breath of oxygen and watch my son grow then I'm happy and those are things noone can take from me whether I'm broke or not. In today's economy even healthy people worry about jobs, insurance, money etc. so it's completely normal to have worrisome negative thoughts. It's human nature to worry my friend. Hope it gets better for ya.
Kline84
SpookySpookyMember
Definitely, a lot can be said about personal connection with the therapist as well. Just because one didn't work out, doesn't mean another will not. Thankfully I'm not currently in a position where I would want or need therapy, but again, the reason I shared my own experience was not to dissuade anyone who may be seeking therapy, but because I feel it's important to find a therapist you can relate to. In my case, it was my choice to go to therapy; however, I asked for a referral through my family physicians office, I didn't find the therapist on my own. Anyway, it didn't work out the way I'd hoped. Clearly I didn't get set up with the right type of therapist for my problem and/or never established a rapport. But I learned a lot from that experience, and in the future, should I ever feel the need to seek therapy, I would definitely look for someone specializing in chronic illness. I agree it doesn't need to be someone who has IBD or even specializes in IBD, but it should be someone who understands it and will therefore be in the best position to help. That was my point.

DJB, good for you for taking this step. I hope you can connect with someone who can help you sort through things.
Spooky
Last edited by Spooky
Laurie49Laurie49Member
It is all about finding a connection with a therapist and as Suebear stated -- most often, you will go through many before you find a good fit. It is an interview process and any good therapist will completely understand if you want to move on. More often than not, they will be the first to recommend someone who is better suited. I also agree with Sue in that exercise is ESSENTIAL when battling all the 'what ifs'. You need a positive release and a good exercise program will help you immensely.

I've had my pouch for a long time, had uc for 15 years prior, and since have dealt a few other serious health issues. If it weren't for a strong support system, an exercise routine, therapy (which included some temporary drugs to get me through a couple of rough patches), I'm not sure where I'd be.

So Husky -- you've got your marching orders. Within a very short time, you need a membership at a gym of your choice (or personal trainer if you can afford it), and to be interviewing/hiring a therapist. No excuses. This will change your life for the better.
Laurie49
CTBarristerCTBarristerMember
My therapy has been this thread and my CCFA support group and at the moment I really do not have time for much else.

I belong to a gym locally, the problem is that I do not get there enough or work out as intensely as I need to when I do. Another problem I have is that there is a local attorney I have a bunch of cases with and he also belongs to this gym, and we constantly run into each other and start talking about our cases. We get along but we are both tightly wound characters. I have actually been on a treadmill at the gym doing my cardio workout and he comes over and starts negotiating settlements with me on two different personal injury files we have, one of which we tried a mediation on which failed. So I go to my gym and actually end up billing on some of my work files. And it came up in a pretrial conference today with the Judge that me and this other attorney actually tried to negotiate out this case in a gym. And it was very amusing to her and she knows both of us and actually told us she would like to see us try a case against each other (which we haven't, yet, although both of us are trial attorneys) because she would find it entertaining. This was of course said off the record in Chambers, because officially it's her job to settle cases, and in fact with her assistance we did settle this case which me and this other attorney failed to do through our "gym negotiations".

So the long and short of it is that the gym has not exactly been an escape for me. But, things are better and I am coming to grips with some of the negativity running through my mind. Most of it revolves around worst case scenarios and having to move to Florida and care for my parents. I have decided I will live for the moment and worry about these worst case possibilities when they happen and not a second sooner.

Anyway thanks for your input Laurie and for resurrecting this thread from the junkppile, the subject of which I had kind of put in the rear view mirror, but not totally. It is kind of like the headlights are still there but sort of out of focus and in the distant recesses of my mind.
CTBarrister
Last edited by CTBarrister
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