HealingWell
Search Close Search
☰

Should I be worried?

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
1 2 3 4 5 67 8 9 10 11 12 13 14
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 4/27/2017 2:51 AM (GMT 0)
Good luck, Plucky, it's hard to fight for yourself when you feel so horrible, but you sound like a strong advocate. Everything about treating UC takes time, which is the one thing I don't feel like I have when I'm falling down the black hole of a flare. And I definitely sympathise with your prednisone struggles ... it's hard to feel like you're being judged by accepting medication. And then to remember that it's only suppressing symptoms, not solving the problem ... what doctor really believe that prednisone sounds like fun to patients?
Keep us updated.
Posted 4/27/2017 9:42 PM (GMT 0)
Hey Plucky, I'm 3 weeks out total colectomy. I saw my surgeon yesterday. She said I'm able to lift our 25lb daughter. Once I got home, I picked her up. Best feeling post op. I'm eating food I couldn't eat previously. Changing​ and emptying the bag is a breeze. I feel like myself again. I'm able to shower without sitting down. I gained 6lbs as well. I even slept last night in my own bed (for the past 5 months I slept on a couch. I could only manage stairs with railings). She said most people don't gain weight for the first month.
Posted 4/27/2017 11:02 PM (GMT 0)
Plucky, I just read your story and I'm exhausted! It reminded me of how awful and desperate things get with UC. I was amused to read that you are doing EFT tapping. This is something I have just recently started and with good results. I can recommend 'How to heal yourself when no one else can by Amy B. Scher' It is an amazing read.

Here is a link to FMT as I think It is definitely worth looking again at home FMT. I did this with my husband by following the instructions on the following link. I did have good results but you may be well past looking at this now.

https://www.thepowerofpoop.com/epatients/fecal-transplant-instructions/
Posted 4/29/2017 1:53 AM (GMT 0)
Thank you Kanva, Aba, and Poppie for your thoughts and well wishes.

Update:

So apparently my colon likes prednisone--at 40mg I am passing stool (some formed) sometimes without blood... well, at least for yesterday and today. That is an improvement and I am grateful, just wish I wasn't "steroid dependent".

I established care with a local PCP today. We moved her in September but it has been chaos and I just didnt bother until I needed refills on my buproprion and synthroid.

As it turns out, she is very sharp and she and I spoke quickly to one another without pause--she "gets it", all of it, and that is so freaking rare to find in an MD (in my opinion). And her husband has Crohn's.

The one thing that I am kind of gilted about is the part where we spoke about surgery. She matter-of-factly said "with all your inflammation and your age you're definitely looking at surgery" and I agreed--I believe surgery is imminent--but she was the first person to ever say it. I told her I just want to have another baby first and then I'll welcome surgery... but the truth is that I'm scared. I'm not at peace with the idea of having surgery. And if I can't have another baby prior to surgery then I won't have another baby, and I'm not at peace with that either. And I didn't realize how I felt until I spoke candidly to this PCP and said it out loud, as fact.

I will see the Oschner IBD specialist on Monday May 1st and I am sooooo hoping she will figure some way to get me in remission and off steroids. I had to cancel my fistulotomy on May 10th because I am too inflamed. My current GI isn't doing anything--just told me to stay on 40mg prednisone until I see the IBD specialist (I do intend to ask the specialist for a referral to a better GI). So that"s basically it. Still winded and tired from the anemia but functional and fully able to care for myself and my toddler--grateful for that. Will update on Monday after I see the IBD specialist.
Posted 4/29/2017 4:30 AM (GMT 0)
Whew! I'm steroid dependent, too. But Entyvio seems to be working for me, although I'm only a month into it. I'm down to 5 mg of prednisone this week and still no symptoms that really bother me. Have you thought about trying it?

Didn't you just start the Humira? Maybe it will kick in and start working along with the steroids!
Posted 4/29/2017 4:51 AM (GMT 0)
Fingers crossed for you, Plucky! No blood is a step in the right direction, prednisone or no! Will have fingers crossed for you and prayers up for a good visit on Monday.
Posted 4/29/2017 8:23 AM (GMT 0)

FlowersGal said...
Whew! I'm steroid dependent, too. But Entyvio seems to be working for me, although I'm only a month into it. I'm down to 5 mg of prednisone this week and still no symptoms that really bother me. Have you thought about trying it?

Didn't you just start the Humira? Maybe it will kick in and start working along with the steroids!

Hey FG! Hey Fletch!
Well I've actually been on Humira for 3 months and it has helped tremendously, but I still haven't reached remission even with steroids and my symptoms worsened when I dropped below 30mg prednisone. The way I see it there are 2 choices: IBD specialist employs another drug to further suppress my cray-cray immune system and allow me to reach remission and wean from prednisone. Or, surgery. I dont want try entyvio at this time as the Humira is working and I dont believe switching biologics will cure my steroid issue, but we will see what the IBD specialist says on Monday. Have a good weekend!
Posted 4/29/2017 5:03 PM (GMT 0)
Functional and able to care for yourself and your toddler - that's a victory for now! smile
Good luck on Monday.
Posted 5/1/2017 10:21 PM (GMT 0)
Update:

You guys, the IBD Specialist officially changed my disgnosis to Crohn's.

She said a fistula is what changes the diagnosis. Period.

I'm trying not to freak out but for 13 years I've lived with the *false sense of security* that if my UC gets bad enough then I could "just" remove my colon and *badda bing* be disease-free and medication-free and just ride off into the sunset and never look back. I seriously thought this was the deal until this flare started in January--cut the colon out = problem solved.

I am having a hard time accepting the diagnosis even though IBD Specialist said it doesn't change how they treat me. It feels like a BFD to me.

So onto the rest... IBD Specialist was confident she can get me into remission with drug therapy and didn't discuss surgery at all. She said it will take time and I might have to switch from Humira to another biologic, so I need to be patient. She is testing me again to see if I am a candidate for immunomodulators. She didn't give my any s#*% about taking steroids but intends to wean me from them one way or another. She understands that I want another baby and said "We are going to get you in remission and get you pregnant" and that felt good because most GI's give no f*÷× about how I want to live my life. Of course I got the "but don't dare get pregnant until you're in remission" speech and I have to laugh because when was the last time I even considered having sex?! What with my thrombosed hemorrhoids, fissure, and fistula?! Plus I have issues with my vagina tearing even on a good day and I just couldnt deal with more injury and pain in that region. TMI folks but I'm sure some of you know exactly how I feel.

So IBD Specialist fit me in for a colonoscopy tomorrow morning @11am. I haven't eaten all day (skipped bfast since we had to leave at 7am to make it to the city for my 9:30am appointment). Wouldnt be so bad but I'm anemic and they also took like 12 viles of blood. I feel pretty shaky. And will launch into a quick colon prep this evening and make sure I'm wearing my disposable underwear for the 2 hour commute back to Oschner tomorrow.

Must day, everyone at Oschner was top-notch from the front desk to the MA to the RN and IBD Specialist. They work efficiently like a well-oiled machine but still manage to be gracious and treat me like a person and not a number.

That's all I got for now... Will update after the colonoscopy tomorrow.
Posted 5/1/2017 11:32 PM (GMT 0)
Yikes. So sorry about the change in diagnosis! But sounds like you are in a good place with the specialist. That's great she's getting you in so quick for the scope. May remission be just around the corner for you!
Posted 5/2/2017 2:35 AM (GMT 0)
Boo for the change in diagnosis, but yay for getting the scope so soon!
Posted 5/2/2017 3:11 AM (GMT 0)
Hey Plucky,

I follow your post since the beginning and I've a lot of sympathy with what you've been through.
Looking for the good GI and having a flare at the same time is not easy. I have hope that this new GI knows what she's doing!

I had UC myself for 12yrs and I just got diagnose Crohn's 3 weeks ago. All you said, I thought about it. No more surgery is going to fix everything. On the good side, this diagnose allowed me to be treated with Stelara, which I hope will work. Maybe it is that kind of biologic your GI is thinking of...

Please keep us post with your results tomorrow and I really hope it goes well.

Stay strong, remission will happen!
Posted 5/2/2017 4:40 AM (GMT 0)
Thank goodness for answers, Plucky! Sounds like you found an awesome specialist and reading your post literally brought tears to my eyes. I am happy for you that you've found a doc who is determined to get you healthy. Fingers crossed that you are headed toward a very durable remission!
Posted 5/2/2017 8:46 AM (GMT 0)
Hey! Thank you FG, Kanva, CSG, and Fletch!

So they gave me what is (in my opinion) THE most awful prep I've ever had--Golytely. Seriously folks, avoid this one at all costs. It's a freaking gallon of foul tasting liquid that you must drink in 2 parts--half at night and half in the morning. It's 3:30am here and I am trying to psych myself up to finish the prep, at least most of it and make sure everything coming out is clear.

It says to mix with water but I used apple juice (I've seen others did that & my nurse didn't object whenI said I was going to use apple juice). Even the apple juice cannot make this stuff taste civilized. I got the chills/shakes really bad last night and I blame the golytely. And I have a "cast iron" stomach but this stuff is making my stomach hurt and making me nauseous. Again I repeat--do not agree to the golytely, ask for an alternative. I read a study that said popping stool softeners and taking 64oz of miralax + gatorade is just as effective if not moreso, and you only have to drink it at night (no split dose/waking up at dawn to choke more down).

Wish me luck y'all.
Posted 5/2/2017 10:46 PM (GMT 0)
Best of luck!! You will never be able to drink apple juice again!!
Posted 5/3/2017 12:19 AM (GMT 0)

Poppie said...
Best of luck!! You will never be able to drink apple juice again!!

This is true!
Posted 5/3/2017 12:33 AM (GMT 0)
Update:

Going into the procedure this morning I felt awful--weak, achy, muscle spasms, headache from dehydration, and my anus/hemorrhoids were incredibly sore. I actually had my husband wheel me in in a wheelchair--got some strange looks because I don't "look sick". I was also freezing and bundled in sweats.

As soon as they started the IV and I got some fluids my headache went away. Everything went well with my anesthesia and the procedure. And here is the result:

I have severe left-sided Colitis. I saw the pictures and it looks like chopped liver. The rest of my digestive tract is perfectly fine. So the official diagnosis is:

Crohn's Colitis

IBD Specialist wants me to start Rowasa enemas *but* if I find I cannot retain them then she'll switch me to Cortifoam. No more Uceris foam, as it clearly has not made a difference.

I had THE most excruciating gas pains and it took awhile for me to recover. I'm in bed now and I still feel like crap and have not eaten anything since Sunday night. IBD Specialist wants me on a low residue diet and after seeing all the "debri" that materialized ftom my colon prep I am going to follow the diet. Husband is making me a gluten-free bagel for my first meal. A far cry from the burger I would normally eat.
Posted 5/3/2017 2:42 AM (GMT 0)
Yeah, that golytely (hahah on the name -- go lightly NOT!) tears me up. Too much to drink and I literally sat on the toilet for 4-6 hours straight, pooping liquid. My butt was so sore! The stuff is too acidic or something. I was crying with every squirt (sorry, TMI) during the last hour or so. Not even diaper rash ointment helped. And the next day, just like you had -- headache and nausea and really weak from dehydration. The last colonoscopy I used a different prep, can't recall the name now, but it was two 8 oz bottles, and it was much gentler.
Posted 5/4/2017 4:36 AM (GMT 0)

FlowersGal said...
Yeah, that golytely (hahah on the name -- go lightly NOT!) tears me up. Too much to drink and I literally sat on the toilet for 4-6 hours straight, pooping liquid. My butt was so sore! The stuff is too acidic or something. I was crying with every squirt (sorry, TMI) during the last hour or so. Not even diaper rash ointment helped. And the next day, just like you had -- headache and nausea and really weak from dehydration. The last colonoscopy I used a different prep, can't recall the name now, but it was two 8 oz bottles, and it was much gentler.

I'm glad I'm not the only one who thinks golytely is the worst! I mean all bowel preps suck but they don't have to cripple you in order to get the job done.
Posted 5/13/2017 2:12 AM (GMT 0)
UPDATE!

I just got my TMPT results (which say whether or not I am able to metabolize 6MP and Imuran). My other GI ran the test and results said "this individual is most likely heterozygous" for whatever gene it is that idicates if you can/cannot metabolize this stuff. Both of my IBD Specialists (STL and NOLA) side-eyed this result.

So IBD Specialist in NOLA ran the test again and told me there are like 6 different companies that offer the test but she goes through Mayo clinic (gold standard) and would trust those results.

Result: 100% completely fracking NORMAL

I can, in fact, metabolize 6MP and Imuran, no problem!

Do you know what this means?! Maybe if I add 6MP then I will be able to wean off the prednisone. Wouldn't that be lovely?

I have to go have serum levels of Humira drawn tomorrow morning at labcorp (I snagged an appointment at 10am so maybe I won't have to wait standing-room-only for 2 hours). Quite curious to see these results and hoping they are good.

I started using cortifoam at bedtime this week and it appears to be helping. Instead of waking up 2 or 3x to toilet I am only waking once. Generally toileting less frequently and seeing less blood. I have been passing plenty of soft stool each day and it would be more formed but I take dulcolax because appparently I need it in order to "stay regular". I haven't taken any Bentyl this week and only 1/2 a hydrocodone a couple times for pain (lower back and rectum). Since I've been getting better I decided not to drop from 40mg prednisone to 35mg this week. But I do intend to drop to 35mg on Monday and see how I feel. I'm quite tired this week even though my other symptoms have improved. And I've eaten a ton but not gained a pound. I guess my body is really putting all it's energy into healing. I pray it continues to heal.

Hope everyone has a good weekend!

Post Edited (Plucky) : 5/12/2017 8:16:00 PM (GMT-6)

Posted 5/13/2017 4:12 AM (GMT 0)
I just got somewhat caught up. I am so sorry to hear about the diagnosis changes, but it sounds like your new GI is more confident than the old one and much more willing to work with you to find solutions, and that's great! NCOT has Crohn's Colitis, but we don't have too many people with that diagnosis here. I am not sure how viable a solution surgery is with that diagnosis, or whether a j-pouch would be an option with the fistula regardless. I always did incredibly well on steroids, but the other meds didn't work so well. If you're on Humira 3 months and you're on a high dose of pred, and you're still having good and bad days, I personally wouldn't consider the Humira very successful. I wouldn't be too stuck on staying the course with that too long unless you start seeing strong signs of improvement, or have plan. With Remicade, it's weight based dosing, and that can give you better results. The addition of 6mp or imuran might get you headed in the right direction too - it's great news that you can metabolize it. It would be great if you could have a baby, but you could consider options, a surrogate, adoption... It might be best for your health to keep an open mind- not to say you won't get pregnant and have a baby, I am 100% sure you will, but don't put pressure on yourself, there are ways to make it happen without sacrificing your health.
Posted 5/13/2017 9:12 AM (GMT 0)

notsosicklygirl said...
I just got somewhat caught up. I am so sorry to hear about the diagnosis changes, but it sounds like your new GI is more confident than the old one and much more willing to work with you to find solutions, and that's great! NCOT has Crohn's Colitis, but we don't have too many people with that diagnosis here. I am not sure how viable a solution surgery is with that diagnosis, or whether a j-pouch would be an option with the fistula regardless. I always did incredibly well on steroids, but the other meds didn't work so well. If you're on Humira 3 months and you're on a high dose of pred, and you're still having good and bad days, I personally wouldn't consider the Humira very successful. I wouldn't be too stuck on staying the course with that too long unless you start seeing strong signs of improvement, or have plan. With Remicade, it's weight based dosing, and that can give you better results. The addition of 6mp or imuran might get you headed in the right direction too - it's great news that you can metabolize it. It would be great if you could have a baby, but you could consider options, a surrogate, adoption... It might be best for your health to keep an open mind- not to say you won't get pregnant and have a baby, I am 100% sure you will, but don't put pressure on yourself, there are ways to make it happen without sacrificing your health.

Hey NSSG!
I see your points, and thank you. It's true; I have not accepted the diagnosis of CC yet since I still want the j-pouch option (even though I realize that it may not be the best option for me regardless). I feel like I was much bolder and braver prior to this flare and now I'm weak and worn down and scared of the unknown. I wish I was as gung-ho about surgery as Kanva. Old me would probably already have lined up a surgeon. Current me is stuck paralyzed on the toilet waiting for someone else to decide my fate.

I like the Humira because it has done a lot for me and I don't appear to have any negative side effects. Plus, I don't want to wait weeks/months to get on another biologic and see if it works--you know the deal. Hoping Specialist will try 6MP and see if it does the trick. Oh and Remicaid isn't an option--already tried and failed back in 2013. Specialist seemed keen on Stelara or Entyvio.

I've been giving the baby thing a lot of thought. I want very much to be pregnant again, even though it is difficult and scary when you have IBD like this. But if I can't get pregnant then we won't add to our family because adoption and surrogate are so freaking expensive and we are fortunate enough to have one great toddler. I was prepared to spend a fortune to have a baby (and we did do 6 IUI's to conceive toddler so it wasn't cheap) but since we have her I cannot fathom the $50k it would take (minimum) to adopt an infant domestically or to do IVF and hire a surrogate to carry. I know people who have done both and they are actually closer to $100k in debt (but they are wealthy so they can manage it and still have very comfortable lives). We'll see--maybe we'll win the lottery or something, eh?
Posted 5/13/2017 2:50 PM (GMT 0)
100k is a lot. My aunt adopted children and I can't imagine she spent anything even close to that, but that was a long time ago. I guess you will have to wait and see, try to focus on yourself, and get better quickly so you can work on your other goals. Perhaps taking that money, and putting it in a college fund for your toddler would be a nice idea! When it comes down to it, having one child is wonderful, you can really give them the upbringing most people only dream of. I always felt like there were some huge advantages to being an only child. I have siblings but my parents were spread very thin and money was always a struggle. Not what I would choose for myself, or certainly not how i would want to raise children, but seems to be the norm. Don't some insurance plans help with the costs associated with fertility? I hope it works out how you want, but if not, you sound like you're happy with what you have.

Maybe 6mp/imuran will be the key to getting you feeling better. They take some time to work, but they can be long-term solutions. I hope so. Surgery with Crohn's isn't curative, so I don't think I would go that route unless it was 100% necessary. You should really push for the endoscopy. It would be good to have all the information when you need it. It's hard to be gung ho about surgery if it's not going to cure you.
Posted 5/13/2017 9:45 PM (GMT 0)

notsosicklygirl said...
100k is a lot. My aunt adopted children and I can't imagine she spent anything even close to that, but that was a long time ago. I guess you will have to wait and see, try to focus on yourself, and get better quickly so you can work on your other goals. Perhaps taking that money, and putting it in a college fund for your toddler would be a nice idea! When it comes down to it, having one child is wonderful, you can really give them the upbringing most people only dream of. I always felt like there were some huge advantages to being an only child. I have siblings but my parents were spread very thin and money was always a struggle. Not what I would choose for myself, or certainly not how i would want to raise children, but seems to be the norm. Don't some insurance plans help with the costs associated with fertility? I hope it works out how you want, but if not, you sound like you're happy with what you have.

Maybe 6mp/imuran will be the key to getting you feeling better. They take some time to work, but they can be long-term solutions. I hope so. Surgery with Crohn's isn't curative, so I don't think I would go that route unless it was 100% necessary. You should really push for the endoscopy. It would be good to have all the information when you need it. It's hard to be gung ho about surgery if it's not going to cure you.

100k is a fortune! Adoption or surrogacy does not have to cost so much, but it can--especially when you factor in the cost of failed fertility treatments. Our previous insurance covered a lot of our IUI costs but that is actually rare and most insurances don't cover much if any fertility treatments. Some states are better than others about mandating infertility coverage. But in general, most people find themselves in debt. I agree with you that putting resources toward one child and fully funding her education is a great thing! I only have one sibling and we lost our Momand are estranged from our dad so we really only have each other. Husband and I are estranged from all our living parents and his siblings suck too. So one reason I want another child is so that toddler has a sibling, since we have no other family to speak of and we are older and neither of us is in the best of health (I have IBD and Husband has Cardiomyopathy and is overweight).

I just have no idea what IBD Specialist will want to try, as I haven't spoken to her since the colonoscopy. She is out of the office for 2 weeks and I won't see her until May 22nd. The good thing is, she will definitely have a game plan. The bad thing is, I may not like it.
Posted 5/13/2017 11:01 PM (GMT 0)
NSSG: So true that it's hard to be gung-ho about surgery if you know it won't cure you.
Plucky: I appreciate your optimism in me, but I didn't feel gung-ho when I was making my surgery decision, really! smile It felt like a desperate choice that I couldn't avoid, like hitting a dead end. Once I accepted the surgery as needed, I hardly had any energy left to make any of the other logistic decisions. Luckily for me, all has gone well so far.
For you, seems like getting on 6MP/imuran makes a lot of sense. I think a lot of folks can manage things well with the combo of that and a biologic.
I can't imagine what it must feel like to be in the midst of this through raising a toddler. My kids are 8 and 12, so they are more independent, and I know we're done building our family. Hang in there .... not that it will really bring you comfort, I'm sure, but I think the right baby answer will become apparent at the right time for you. smile
✚ New Topic ✚ Reply
1234567891011121314