Long time suffering - first time posting - feeling hopeless from this flare

Greetings fellow UC survivors, the newly diagnosed, the left-sided and the pans:

I want to start by sharing a short history of my life with Colitis. It's my hope that someone else can identify with some of my struggles and in turn may provide some help to someone else. I won't lie to you though, I am in desperate need of help and support myself but we'll get to that a bit later.

I was diagnosed with Ulcerative Colitis when I was about 15 years old and have been living with UC and its ever increasing savagery for the past 16 years. My first GI quickly ran through the 5ASAs, flagyl, lamotil, etc etc - at one point I was taking 21 pills a day. I missed approximately 48% of my Sophomore year in High School (I did all of my schoolwork at home but did miss lectures). I had my first visit to the hospital that December at which point my GI colded stated "surgery can cure this". I quickly switched GIs and we started a new treatment course of 6MP, a different 5ASA, and of course some Prednisone for good measure. It took the 6MP a solid three months to build up to therapeutic levels but when it did I was able to resume my life in High School, graduate, and go to college.

When in college I had about a year of good health. Returning the fall of 2001 I started having symptoms but lied to myself and 'fought through' without telling anyone, just gradually getting sicker and sicker. I was not well when I went home for Christmas but not so bad that my parents noticed... It wasn't until April the next semester that I could no longer swallow food because of the ulcers in my mouth and esophagus. I have very little recollection of it but I foolishly drove home and arrived at my parent's front door a ghostly white. When I visited my GI he was taken aback by the state of my health and ordered an AIDS test; I was in no condition to protest the notion - but I knew I had no risk factors. But even so, waiting for the results of that test was scary. The blood work came back with low RBC, 6MP levels had fallen on the floor (way below therapeutic), and low scores just about everywhere else that matters. Oh yeah, also no AIDS. Despite the results the doctor did not order me to the hospital, I spent the next three months in bed being taken care of by my parents and grandparents (who drove quite a distance to come and see me). The Prednisone eventually got me back on my feet, my 6MP levels returned to normal, and I was able to move forward with my life. I withdrew from college and got a decent paying job checking in cars at an airport for six months before I realized that I wanted to finish my degree. I re-applied to a different school and started finishing this chapter of my life. I flared on and off for a few weeks at a time, each occurrence quelled by a short blast of Prednisone. But Spring of 2006 was different, Prednisone was not enough this time - it was Remicade or surgery. I was given two infusions of Remicade over the course of about six to eight weeks with SUPERIOR results. The doctor has no notes as to why the treatments were stopped but the 6MP and 5ASAs were keeping me in remission. I was able to complete my degree, landed a good job travelling the world, eventually met my lady and got married in 2010. I had minor flares from time to time, but nothing that a two-three week course of Prednisone couldn't handle.

When I talked to my GI for my most recent flare (started early December 2012; December 18th I called the doctor for Prednisone) he was convinced that I had C.Diff as I had recently been Rx'd a Z-pak for a cough that I just couldn't shake. I had not heard of C.Diff - when I looked it up I definitely didn't want to deal with that. The tests results came back negative, whew. After I failed to get any better on 20mg, we bumped the dose to 40mg... a week later I was still doing worse and scheduled a face to face. We reviewed my history and calculated about 2 flares per year since diagnosis. It was at this point I had to ask: what defines remission... and what's the next move with medication?

This flare is no joke and I felt it was different this time; I even told my GI when I saw him. Got up to 60mg of Prednisone with no response, my symptoms would plateau and then get worse week over week. My colonoscopy was scheduled Jan 24, 2013 and the results came back unsurprisingly with the words 'full blown rip roaring flare' - inflammation everywhere except a little tiny bit toward my small intestine. Options: surgery, hospital (for IV steroids), Humira. I chose Humira... which took about two weeks to get approved jumping through the Hepatitis tests, TB tests and insurance approvals. The approvals didn't arrive fast enough and I landed myself in the hospital Feb 10th after passing out on the toilet, massive blood loss the entire day before... should have known to get help earlier than midnight. IV steroids got me released from the hospital on the 13th and I was able to take my loading dose of Humira on the 14th; yay, hope! A few weeks later and I felt strong enough to go back to the office!

March 22nd symptoms return :-| April 5th, begin weekly injections of Humira. Once again, week over week symptoms slowly get worse (almost to the point where I wouldn't notice). Luckily I started tracking symptoms just after the colonoscopy: frequency, amount of blood, interrupted sleep, weight, etc etc - after 4 weeks I went back to the GI as it was clear to me Humira wasn't helping to improve my condition. We tried to order Remicade but my GI is in another city and doesn't have privileges to Rx at any of the offices that administer the drug where I live, it was time to switch GIs. With quick success I was able to meet and feel comfortable with a GI located about 2 miles away from my house, far better than the 3 hour round trip drive I was making each time to see my other GI...

I tried to go on vacation with my wife and her family to Vermont last Saturday but ended up just getting really sick, lots of blood and cramping, and as a result was stuck inside which, to me, kept everyone else stuck inside too. I felt like it was my fault for ruining vacation. By Tuesday night I was scared to be away from my home town hospitals and my new GI so instead of flying home we drove home - 14 hours... in a car (thankfully we traded in the Fiat 500 for the VW Passat). The night before we drove home I was up several times for the bathroom; one 'incursion' drove me to pick up a pack of Depends for the first time in my life (as a safe guard for the car trip home). I had reached a new low with my Colitis.

Humira has officially stopped working for me and given when I started having symptoms reoccur (at the end of March) I'm not sure that it ever did anything for me, despite my optimism. I am starting Remicade this Wednesday and that day truly cannot arrive soon enough. I feel like I'm in the bathroom every 2 or 3 hours and I need to get there QUICK! To my recollection I haven't slept a full night for the past six months and some days, like today, my symptoms are so bad that I feel absolutely hopeless. I would cry more if I didn't need the water so badly to stay hydrated. That's about all I can muster for this session and I hope to share better news soon.

I do have to thank my wife and family from the bottom of my heart for supporting me throughout my most recent struggle; without them I would surely be lost as I can barely take care of myself some days. Bad days consist of gut-wrenching cramps and shuffling from the couch to the bathroom (or bed to the bathroom) - it is difficult to stand up straight and feel like I need to hold my intestines in. There are some things that they will not understand however and I am experiencing something that is completely foreign to them so I reach out to you as my extended support group family.

I do have some questions that I would like to ask the group concerning their decision(s) to move forward with surgery. I'm curious about what they struggle with currently and why the chose the operation that they did (j-pouch versus k-pouch or BCIR). At this point anything would be helpful. I have been behind this flare since the beginning and this option is my logical next step beyond Remicade (barring any clinical trials for Anti-IP-10 studies that I might get convinced to try locally). I would like to be as prepared as possible.

Take care all and I do appreciate any feedback/advice/wisdom that anyone is willing to share with me and everyone else here.

-R

Have you ever tried antibiotics? I didn't see any mention of this in your previous post. I would be trying everything before surgery but that's just me. Everything consists of; high does of probiotics, dietary restrictions, antibiotics, antidepressants, worm therapy... please read the resources thread, I would try everything listed in that thread before surgery but that's just me. To be honest, when it really comes down to it, I've seen a ton of people have great results with surgery and it's not a bad option. I'd prefer to keep my body in tact but if it came to surgery, I would go forward and hope for the best. Let's face it, not every story is going to be 100% positive but the GREAT majority are positive. The most important thing is to find a very skilled surgeon with this procedure.

When i was at my worst, I got psychological help, started an antidepressant. Took a course of antibiotics, stayed on all of my regular medications... I was very lucky to pull through, I really felt defeated at that time. Whatever you decide, surgery or not, there is a long and happy future. I don't think kpouch or BCIR is common, most people get a jpouch.

Hi,

 You haven't mentioned anywhere about your diet. Before opting for surgery try an anti-inflammatory diet by restricting wheat, sugar, diary and processed foods. Your colon being highly inflamed you have to avoid high fibrous foods too. Many people have success in controlling symptoms by diet. SCD diet and PALEO diet are the most successful ones.

 There are many alternate therapies which helps to achieve remission. The success rate varies, reason being we all are different. The most discussed ones in this forum are Fecal Transplant, Amino acid Therapy and  Low Dose Naltrexone(LDN).

 Try everything possible to save your colon...because once you remove it ..its gone for ever....

 

Wow sorry you are not alone. I can't imagine having UC as a kid. I went through the 21 pills that made me so ill I did not get out bed for a month. Stopped all pills an focused on being healthy as possible and it worked for awhile. Went through everything and it all stopped working or I became allergic.

I was flare free 3 yrs got Pneumonia this winter put on antibiotics and I have not been well since. Piled on by pills and sicker by the day. If prednizone is not working it is off to surgery in about 15 days. I just want to make it to my second opinion.

A good resource for surgery support and decision advice is over on the other side in the Ostomy support forum even if you are not heading there (I might be in two weeks) there is a lot of worthwhile wisdom, support and decision making tools if you are facing surgery. What to expect and things to think of before you get there.

Good Luck and I will be thinking of you. I am glad you have a gracious family out there in your corner.

Welcome to the forum. Sounds like its been awful for you. Have you also used rectal meds at any point?

Welcome to the forum!

It seems you've been through extremes already....the decision to have surgery should be considered when quality of life pretty much sucks.

I'd happily have my colon out...but long before what you've been through.  I disagree with doing everything to save your colon...seems it's already waving the white flag.

Lots of good support on the ostomies forum as well...

Whatever you choose, base it on moving forward.

q

cc,

Welcome to the forum.

So sorry to hear about your roller-coaster ride.

How about trying LDN, low dose naltrexone?

It put me in remission.

If you are interested, there are things IMO that you can control, which will have a direct impact on your disease, the symptoms you experience and their severity.

I was able to control my UC into remission through various supplements, probiotics, diet modification, and LDN , low dose naltrexone.

For more info on the protocol which has put me into remission, please go to this link: https://www.healingwell.com/community/default.aspx?f=38&m=1666318 , and look at the 11th post.

I hope you feel better and let us know how we can help you.

Welcome to the forum. Whatever you decide, I wish you well. This forum will always be here to support you.

Happy to provide the information! If I have to go down this road, I'd prefer to use the best dang lemonade recipe I can find with the lemons that I've been given. ;-)

I made it to Wednesday! Thank you all so much for your support and suggestions!

My symptoms were so bad Monday night that I refused to eat anything at all yesterday in the hopes that I would stop using the bathroom and give my bowels a rest. Still ended up going 10 times :-( Ugh. Got into my 'safety pants' this morning for the car ride to the clinic, just in case... I'm getting the Remicade pumped in me as I type (one-handed).

To answer some questions/comments that have been posted:
I was on Cipro at the beginning of January.
I have tried all kinds of probiotics (keifer, vsl#3, etc).
I have tried Turmeric.
I have never tried rectal meds.
I will admit that my diet is probably not helpful. Eating delicious cheesy, greasy food is something that I LOVE to do. I noticed no difference in symptoms when I tried a low-residue diet (chicken, rice and noodles) and I have decided food is not something I'm willing to give up.

I will definitely check out the Ostomy support forum. I have done some research on surgery looking for options; K-pouch and BCIR seem like the right fit for me - like Meredith610 I don't want to feel like I need to run to the bathroom ever again. My concern is emergency care locally; if something goes wrong will the docs/surgeons around be able to care for me? My other concern is 'phantom' feelings, like needing to pass gas and not being able to.

I will look into LDN and Amino Acids but to be totally honest I can't live like this anymore; my wife, family, and friends deserve a much healthier version of me. I also deserve good health for myself too and I'm just getting tired of fighting these symptoms. My hope is that the Remicade gets me to a point where I can meet surgeons at The Cleveland Clinic (for K-Pouch) and/or The Palms (for BCIR).

-R

Post Edited (careening_colon) : 5/22/2013 7:42:02 AM (GMT-6)

"when I tried a low-residue diet (chicken, rice and noodles) and I have decided food is not something I'm willing to give up.
"

Lol, the reason why most people fail on diets it's because it's an imposed diet as opposed to a diet that you willingly follow. Let me explain.

Say, you were healthy (no disease, no nothing), and you stumble upon SCD/Paleo. You decide that this way of living/eating is superior and you wanna to adher to it. You will success most likely simply because you chose to without being "forced" upon you.

On the other hand, when you are sick with a disease and you feel like crap and are desperate, the last thing you want is stuff forced upon you. You must eat this and and that, omit this and that because if you don't you will get sicker. This is bad and it's precicely why most people fail the diet mods.

But most things work this way.

I went to my follow up visit with the GI yesterday (Tuesday).

We went over my horrible weekend, my newly manifested low-grade fever that started on Friday, and my broken mental state. I've had no positive response to the Remicade. I have sudden cramping with the urgent need to move my bowels but then not much more than a teaspoonful ever shows up with blood and mucus (sometimes during the day there is not much blood at all). The cramps stop and I can breathe again. Once I start to breathe I have this involuntary reaction to "cut off the last poop" which really hurts the hemorrhoids quite a bit. I am pretty sure this is 'having to go feeling' is tenesmus.

I officially lost my appetite on Friday but tried to force some food each day over the weekend. I didn't eat at all on Tuesday when I went for my follow up. Doc sent me for blood work at the clinic STAT and IV fluids & steroid. He said he would contact a surgeon for me and that I should meet him within 24 hours, likely in the hospital (I was ready for the hospital admission for IV steroid anyway, so I was a bit relieved).

IV fluids & steroid at the clinic made me feel a bit better, the steroid certainly shot the tenesmus down in a hurry. During my 3 hours IV treatment at the clinic the doc called and said that he had spoken to the surgeon who will be admitting me to the hospital that evening as I would likely get expedited care and scheduling for surgery.

I cried; this is the phone call that I've dreaded since finding out I had Ulcertaive Colitis so many years ago. I'm pretty sure I cried out of fear of the unknown and a little fear of surgery. It wasn't a cry of relief.

My wife picked me up from the clinic, I had pulled myself back together by the end of the second bag of Dextrose. I finished up some work items I had left over and let my boss and some coworkers know where I was headed and that I'd be gone for surgery for a while.

The surgeon's admission nurse called me at about 4:30 pm saying that she just got the paperwork to start pre-authorizing with insurance and doing everything needed to admit me to the hospital. I confirmed a few things and the call ended. I spent the next few hours soaking up what it was like to be at home, watching my kittens play, and petting them when they came over to sniff me or curl up on me. The next phone call came in at 6 saying that my room was ready. Time to pack the bag and say my goodbyes. I took my sweet time, I'll admit I was dragging intentionally - I wanted to stay home and just be better. I spent time researching surgery and my surgeon (his CV, interests, etc).

I got into my room around 8 pm and was greeted with the flurry of "admission". Quite surprised I met the admitting surgeon within the hour! I wasn't expecting to see him until the next day. We spoke about my health history and struggles with UC. He reviewed several options and what he believes to be the best course of action and explained why. Total protocolectomy with end ileostomy. Heal, get off all this medicine and steroid, feel what it's like to be healthy. He did mention j-pouch in a second and third surgery. I'm trying to keep an open mind but I'm still opposed to it, mostly because I'm scared of multiple surgeries in addition to not wanting to use the bathroom 4-8x/day and be subject to all the irritation that can cause. The reassuring part was that I didn't have to decide on the pouch option now and that if, after the months with the bag, I decided K-pouch was what I wanted that he would put me in contact with the surgeons at the Cleveland Clinic. He is getting me on the schedule for surgery Thursday. I'm sure he told me a time but I've forgotten... I lose detailed information when stuff gets real... and getting on the schedule for surgery within 48 hours (for me) - stuff just got real. Overall first impression: excellent.

Keeping my friends and family up to date on all this has become, quite frankly, very taxing. I feel bad saying that but hey, it's how I feel; it's hard enough coming to terms with what's happening to me and when. I'm doing my best to manage it but it's hard when that phone beeps with a new txt msg. I am grateful for the support but I am also an extremely private person (aside from pouring my guts out on this forum).

Cut to today after a bad nights sleep full of anxiety and cold/night sweats... my surgeon came back to talk with me in the morning. I asked some more questions about the procedure, how many people would be on the surgical team, life after with a pouch...with a J-pouch, when can I drive again, his experiences as a general surgeon and as a colorectal surgeon, success rate, recovery time. Every answer was reassuring and when he left I was ready to accept that it was indeed high time for my disease to come out.

I'm not trying to say at all that I'm ready for this, I'm not sure one truly can be ready to lose a part of their body. But I can accept it. My colon and I have had some really good poops together and it was there for me growing up... until it decided to get angry. I realize at this point my colon is no longer there for me and it checked out a long time ago. I have most likely been malnourished and sickly because of it for 16 years and it's time to heal.

I did mention my anxiety about surgery and my surgeon wrote a script for some anti-anxiety meds should I really start to freak out later. I'm scared about all the tubes that will be coming out of me post-op. I'm scared about the anesthesia. I'm scared that I won't get better, or that I am trading in one set of problems for a new set of problems. What if my inflammation just jumps to another part of me? I'm scared that I will never be able to be intimate with my wife again. Just a bunch of unknowns out ahead of me that I don't think I'm ready to find the answers to (and won't be able to find the answers to until it is done).

I think that's about all the energy I have for writing right now, thanks for reading Hope it helps someone besides me one day!

-R

It's true that the only constant in life is change. No matter who we are or what challenges we face, nothing ever stays the same. All we can do is make the best decision available with the information that we have been given. And it sounds like you've done your homework and know that this is the right thing to do, which makes all the difference in the world. Unfortunately, with this disease, there is no cure and there is no perfect solution. We're all responsible to do our best to be healthy and make the best with the time that we've been given, and it sounds like an ileostomy will enable you to do that. And if, as you say, you heal up and decide that you want to try the j-pouch, k-pouch, or BCIR, go for it! You can do this, you will adapt, and you will come out of it healthier and happier! You'll more than likely come out of this thinking, "Why didn't I do this sooner?!" Thoughts and prayers as you kick colon cancer's butt!