Heparin requires monitoring of the clotting process, and rarely causes thrombocytopenia, which REALLY complicates things. In addition, Lovenox (enoxaparin) is more specific regarding the clotting factors upon which it acts.
Before we dive in here - thank you for caring enough to post. You’ve read the thread and took the time for a long, detailed message to me, and you did not need to take that time out of your life to do that. The thought and effort is appreciated.
I don’t fear death the way I used to. I fear a lingering, painful death, but I’ve come to believe there are worse things than dying. I fear spending months in a place like this, putting up with pain and stress and hoping I’d recover, then dying - or worse, not. Getting just sick enough that I can never break the spiral of bad health and get anything fixed.
Yeah, I don’t want to be kicked out of here. I cannot live on my own right now. Kind of a reasonable concern, I think. Considering that three months and one week ago, I was fairly independant, keeping house and caring for someone else, I also fear being dependent and under the control of the rehab facility, which of late seems less rehab and more The Three Stooges Nursing Home. As for depression, well, I have never been more depressed in my adult life. Not even when was I sick four years ago.
I’ve spent the last 17 years with Crohn’s, all of which were under-served by medical treatment. I’ve spent the past 12 years caring for my mother and doing almost nothing else. I could have died about 4 years back. The local hospital would not operate and were suggesting conservative, non-invasive treatment, which would not have ended well, according to my (eventual) surgeon. When I was in ICU, one doctor tried to manually reduce my hernia. Only problem was, it wasn’t a hernia: it was a huge pocket of infection and feces that looked like a hernia. The part of it that was visible on the outside. Funny thing was, that wasn’t what got me to the ER. It was the bilateral PE’s that made me pass out when I tried to walk. The PE’s likely saved me from the infection. I did not have insurance, it didn;t kick in for another 2 weeks, at the first of the year, and I would have been horribly ill before then. Kind of a miracle I didn’t have infection all through my body already. Not too many ppl are thankful for multiple PEs.
One doctor fought for me and got me transferred to a hospital where they’d operate. A year later in a follow-up appointment, my surgeon said that it was the worst he’d ever seen, and that I was one of those patients you never forget. I spent three months in the hospital and rehab. I guess I said all that so I could get to this point: Ever since, all I’ve really hoped for was 5 or 6 years of reasonable health and enough freedom to visit my friends up north. Freedom to go places without being chained to a toilet and without fear of having ‘accidents’. Five or six years to live and make new memories instead of exist, to simply survive through day after day of pain.
I don’t have much more to work with. Reinforcements are not on the way. I’ve hardly seen anyone in 12 years but my sister and my mother. Between my own sickness and Mom’s needs, I didn’t get out much. Mom’s undergoing psychiatric evaluation now, and my sister has to handle that on her own, along with her own job and her life. I see her about 90 minutes a week. I wouldn’t have put Mom in a home while I could avoid it, but that’s been taken out of my hands now, and all I have left is my hope for my five or six years of relative health and freedom. I about lost my mind when I got my DVT before my back surgery. At that moment, Mom had to go away, and I even lost my dog. There was no choice after that.
Just so much collapsed around me, and still threatens to - ALL BECAUSE OF THE DAMN DVT. If I hadn’t had that, I’d have had my back surgery and been back home caring for Mom and waiting on my colon surgery. But because of that one last gratuitous insult, I had to sit here and stare at walls for months on end while everything flies apart like shrapnel.
I have to make it through another 5 weeks to my colon surgery. That at least will be the first progress I’d have made in 17 years, the first progress I’d had in three months of sitting here while my mother bounces around finding a place that can handle her, and my sister tries to keep it together while Mom has her last go at making our lives miserable.
I am just rambling. I’ll leave it. You were wondering what I feared. Basically, I feared this. Every bit of this, and still more that’s come to pass these past three months that I’m not going to talk about. All I have to do is keep it together until my surgeries and avoid another blood clot, and I’m doing what I can there. Oh, and outlast the kitchen’s, “Find the Gluten” sick little game. Spoiler alert: today, they put gravy - chicken gravy, I think - on my plain-hamburger-patty-on-a-plate. Chicken gravy.
That damned DVT has sent multiple lives off-course. Mine, my mother’s, my sister’s, even my sad little dog. You’d think the cellulitis on my foot, the broken vertebrae, the neverending Crohn;s flare and impending colectomy wound be enough at one time. Not the case.
Update:
I’m scheduled for a colectomy on October 3rd. I’ll be in the hospital for a few days, and if all goes well, they’ll ship me to a nursing/rehab facility to recover and wait for my next surgery, which will be to repair my vertebrae. No details of the back surgery have been worked out, including where it will happen and who will do it. Hoping to make some progress on that front during my hospital stay for my colectomy. Also hoping to find a different nursing/rehab facility, so I don’t have to come back here.
I’ve been in the hospital or nursing home since the end of May. Four straight months of lying in bed. Everything points to this being a real, positive step in improving my health, the biggest one I’ve taken in the 17 years since I’ve been diagnosed. Those who have had this operation assure me it’s the best thing that they could have done.
Been a tough few months. Everyone keeps asking me if I’m excited, if I am happy to be having this. In a vague, abstract way, yeah, I guess so, but not a lot. Too worn out by too much crap going wrong for too long. After four months in this place, I feel institutionalized. I don’t know what life outside is like anymore. I just exist through day after day, waiting to get to the next operation, hoping it will get me the hell out of this place.
So, October 3rd is my next big day. I’ll post back here, probably 3-5 days later. Sooner, if history is any guide, but I can’t be sure.
I’m glad that you’ll be having the surgery in October. I hope it goes well.
Thanks. I’m about 8 days past my surgery. Been rough. For the first few days it was like some heavyweight boxer worked over my abdomen for 30 minutes. Such pain. Had issues with the functioning of my intestines - lot of ‘output’. Passed a kidney stone. Sure would like to see real improvement, because right now things feel like a regular Crohn’s flare, except I dont have to run to the bathroom, I have a bag to catch things. I look occasionally, afraid I’ll see a bag full of blood. Hasn’t happened yet, but until things calm down, I’ll keep looking.
Thinking/working on the back surgery next. Need to get a referral. Not gonna wait around for that for forever. Need to set up an appt to get in ASAP. Hoping I’ll be healed well enough for my next surgery by the time I can arrange to have it.
Trying to get used to caring for the ostomy, even as I’m trying to get used to having it.
Best wishes for a speedy recovery!
Hang in there!
Oh, geez. I am so glad you got the surgery. I hope it’s a good outcome. Are you headed to a rehab center next?
Thanks everyone. Yeah, I’m back in the SAME rehab center. I talked with the folks at the hospital, and they talked with the facility about their inability to serve me gluten free food. So far so good.
Abdomen is feeling better, thankfully.
My gosh what a saga! I’m very glad you are on the mend.
How are you doing?
Has you next surgery been scheduled?
Let us know how you’re doing.
Well, I’m a month past my colectomy and ileostomy. Still being careful of what I eat. Mostly potatoes and rice and meat, with some eggs thrown in. Had some gluten free chocolate chip cookies (rice flour) and some Butter finger candy bars on Halloween and I tolerated them well. The latter is mostly peanut butter and sugar, and they said that was safe to eat. Worked out OK. I find the bag annoying, I have to empty it like four times a day, and I only eat three times a day, when they feed me. Still better than the blood, pain and cramping, and the messing myself… Although I now pass mucus about twice a day, through what remains of my colon/anus. Also annoying. Hoping this all gets easier with time, and when I can walk again.
Still getting used to changing my appliance every four days or so. Not easy for me, but as I heal and get practice hopefully it will get easier. I have a referral for a back surgeon my pcp recommended. Don’t have a date for the first appt yet, the one his office set conflicted with my ostomy follow up in a couple days. Hopefully the rescheduled appt will be soon.
Something went wrong with my SSI appeal. Something that was supposed to be easy and a virtual lock did not happen. So the 8-10 thousand dollars backpay I was hoping to get in October didn’t happen. I got nothing. Least I have my monthly payment and my Medicaid. That extra money could really have come in handy. My nineteen year old Saturn leaks a quart of oil a month, but with my finances, when it dies, that’s pretty much it for having a car. Need dental work, my vision beyond five feet is a joke, and that’s WITH glasses… That money could have found uses. Hell, I was rebuilding my 7-year-old desktop computer before I went into the hospital, and I never finished that. Oh well.
Just waiting on my next surgery and hoping to be home before Christmas and my birthday again. Three of the past four years, I’ve spent the holidays in the hospital. For a guy that doesn’t think of himself as all that sick, I’m sick a lot. 
Best wishes!
Extended use of prednisone tends to cause osteoporosis. It seems like people somehow don’t get told that at the beginning.
I believe somewhere in the thread he explained that he couldn’t afford the pricey alternatives.
Yes, understood. Still - people not getting told “this causes osteoporosis” is an issue IMO.
Some peeps just want relief and skim over warnings. If we had a healthcare plan in this country it would be a non-issue.
Ok. I am off my soapbox, carry on.
Yeah, I was aware of the risks. Hell, my stepsister has Lupus, has had a hip replacement because prednisone killed the marrow in the joint. Felt I was always, “just using it to get over this flare”, but really, I was flaring half the year or more, particularly in recent years. No insurance, and prednisone was effective and cheap. I’m in a group not commonly associated with osteoporosis, and had hoped it would protect me some as well. Didn’t happen.
Got my PCP to recommend a back surgeon that takes my insurance, and refer me to him. Had an appointment scheduled for today, but he called me this morning and canceled. His people told me that after talking with my PCP, he decided that due to my use of blood thinners and my problems wearing a brace (my new ostomy), that he could not help me.
Neither of those problems are going away, but I still need surgery to walk. Guess I’ll call my PCP tomorrow and start over again. This terribly upset me - I canceled my followup for my ostomy surgeon because this was when the back surgeon could see me, and now my ostomy followup isn’t until December 27th - a long time from Oct 11th, the last time i’ve seen a doctor about it (surgery was Oct 3rd). Moved a very important appointment for the back surgeon, and he won’t even see me.
This was supposed to move my recovery forward, and instead it was suddenly a dead end, with news that things I can’t do a damn thing about are gonna affect my ability to get someone to operate on me. So I was upset. A parade of ppl came in to talk to me today, including a psych doctor. Gotta pacify the cattle, keep 'em calm in their stalls while they rake in their money. Not allowed to show a moment’s weakness or be justifiably upset or a gaggle of ppl come in wanting to hold your hand and spout platitudes. They’re not the ones who woke up unable to walk one day and have spent five+ months in a hospital bed.
Jesus, wtf, is my name Job or something? Why can’t ONE fucking thing go as expected?
My impression of the situation is that 1. The back surgery is somewhat tricky because of your health problems and thus both the surgery and backups could take a long to do and 2. You are on Medicaid which pays very little. Consequently most surgeons are not going to financially interested in doing your surgery. [And this is my guess of the reason for your surgeon’s rejection–not blood thinners]
The exception might be a surgeon at a medical school, who might find your case interesting/a good teaching opportunity. What are the medicals schools close to you? Did you say Vanderbilt? If so go to the faculty directory and find the appropriate departments–apparently both orthopaedic surgery and neurological surgery do spine operations.
Go through and read the description of each of the faculty members and find some possibilities. Note each has an email address.
Prepare a letter, including complete a complete medical description and start sending them off (remember they might want to do it because it is medically interesting). Don’t spam large numbers at once. And be sure the title is interesting enough so they read the email.