If you haven’t already, please read first the previous story, “Oh Ulcerative Colitis…How I Underestimated You”
Hey guys…well you all couldn’t have been more right! Just to be clear, my wife is fantastic, and I am notorious for ignoring health problems. Plus, I don’t think either of us understood the severity of the situation. So to reiterate, I wouldn’t have made it to where I am right now without her, and when I go back and read this it makes me feel terrible for painting her in that light.
So, The morning after I sent my story, I had to pull over twice on the way to work to rest because I didn’t have enough energy to stay awake at the wheel. Once I finally made it to the office, I spent about 30 minutes in the bathroom and finally sat down at my desk. I felt like I was on my deathbed Tuesday….but I was somehow feeling much worse. After trying to sleep it off for an hour I finally broke down and asked my sister to come pick me up and take me to the ER. My doctor recommended a hospital, and I was getting an IV less than two hours after the phone call. I was severely dehydrated (despite all the freaking water I tried to choke down!) and slightly anemic.after a few hours in the ER, I was admitted into the hospital.
I have been at the hospital since last Wednesday, with the antibiotics, steroids, fluids, and rest I have gotten some slight relief from the volume and frequency of bowel movements. I began with Morphine, Cipro, Flagyl, and saline in the IV along with jello and water as I could stomach it. After a few days went by, I was able to reduce my bowel movements to 15ish times a day. When having these, there was less pain and significantly less blood. Taking
this as a good sign…I decided to do some soup broth Friday night. Oooooh weeee was that a reality check! I was jumping out of bed with no notice again and fell right back into my old symptoms. At this point, my days consisted of a pain level 6 or 7 (as good as it gets) until the pain medicine began to lose it’s effect. Usually an hour or two before the next dose. I am doing my best to hold off bowel movements until just before another dose of pain medicine so I can use the relief to rest. The vast majority of my suffering is from SEVERE abdominal pain which is greatly exascerbated by changing positions (getting up and laying back down). Since we have seen such little improvement, the doctors have changed up my steroids and antibiotics a number of times. I received a CAT scan on Wednesday and Saturday to verify that no abscesses had developed in my abdomen (which they haven’t). The diagnosis stands as a severe flare-up, horrific abdomen pain, and increasing distension in my stomach.
I had a consult with a surgeon this morning to discuss a possible ileostomy. He was very clear about not wanting to push it until we have explored all other options, but I was ready to jump on the opportunity given the level of suck this week has contained. Right now, the GI has increased my steroids as a last ditch effort to get things under control. Here I am, 330 AM on the toilet wincing in pain as I count down the seconds until my next round of pain meds.
My question now is this:
I have done plenty of research on the pros and cons of surgery, and told myself that I would be all for it if it were suggested. BUT, my dad and stepmom (who is also a doctor) were flabbergasted that I would even consider it without receiving a second opinion. I know this is my decision, but my stepmother is a very smart woman, and I can’t help but wonder if she has a point…
I will definitely be talking with my GI again, including anyone else I can think of that might be able to contribute. But what about other UC’ers? Do you think she might not just understand ALL of the benefits of surgery? Do I need to reitirate the impact my age has on the feasibility of the procedure? How can I approach this without feeling like I’m snubbing anyone?
Thanks again for everything. This means the world to me.
Hey Colitis People. It’s 2011 and I’m 26 years old. I was diagnosed May of 2010 with ulcerative colitis. It all happened just weeks before I moved back home before graduating college.
Hey, This Guy. Just wanted to let you know I got a temporary ileostomy in March and it’s been like night and day for me. No pain, no urgency, no more anemia….I can live my life! I’ve struggled here and there with leaks and stuff but it’s all been part of the learning curve of figuring out how to change the appliance properly, which items work best for me, etc. Would you be looking to get a j-pouch or a permanent ileostomy? My main piece of advice is to get the very best surgeon you can get. Preferably a highly experience colorectal surgeon. If you can get stabilized and have a chance to search for one, then great. If not, then you will have to make do with where you are. Either way, it has to be your decision and you have to make peace with it and be able to move forward. Your family is concerned about you, but you have to wake up and be you every day. It sounds like you feel like you have been through enough. Are you able to try/willing to consider Remicade? That would seem to me to be the only Plan B at this point. Other stuff takes too long considering the state that you’re in.
If you have any more specific questions about surgery, let me know and I’ll be happy to answer them if I can. Also, if you click on my name you can read my blog that has followed the surgery process. Sometimes it helps just to read about what it’s been like for other people. Best of luck to you! You have a beautiful family. :-)
P.S. I have come to believe that the ileostomy/surgery road seems extreme to our loved ones because they don’t understand how bad our UC really is day after day. If they spent a couple of weeks with our illness, then they would be able to see how and ileostomy feel like a relief rather than the “horrible” thing most people see it as. Just my two cents.
Hi this guy, I read and commented on your first post! I am so GLAD to hear you are in hospital!!!!
What a relief to hear that!!!! I am sure you are in a lot of pain but I must say I agree entirely with your stepmother this is very EARLY days to be talking about an op! I know you have been through en horrendous time and have not been well and you are still not great. You need to give the medicines some time to kick in it is very early days as I said and the med’s you were on before you entered hospital were really mild! I was in hospital in May and the med’s took a fortnight to kick in fully. There are loads of med’s out there to take – Remicade, Humira, pentasa, imuran, and countless others. I would highly recommend you google your options and decided from there. I also think your GI was in the wrong BIG time when he just increased your med’s and did not admit you to hospital A LOT sooner! Take care and I wish you a speedy recovery from this horrid flare. Helen.
I’m so glad you’re in the hospital! I have no experience with the surgery – but ask lots of questions and yes get a second opinion. As Helen says there is lots of medicine out there and lots of people to talk to. I was admitted to the hospital in January in Belgium (I live in Canada) -after a week of treatment I was able to leave the hospital. My doctor here in Canada told me that he would have had removed my colon if I had seen him in January… Well, I still have my colon and I’m currently only taking Asacol – no steroids and no other drugs – and I’m feeling 100%.
Keep us updated.
cheers,
vickii
I agree. Try other meds first. You owe it to your body to try and get back to normal so u can make this decision with a clear head. I was in a very similar position last January. I had a remicade infusion in the hospital and began to see relief within one day. I now have worked up to only needing the infusion every 8 weeks. It has been a very long 8 months but I’m starting to live life again and I am off of prednisone 100%. You also can try cimzia. I personally have not tried it but have friends who have seen relief from it.
Good luck and I pray you feel relief very soon. You need to get back to your wife and baby and new job! Keep believing and keep asking questions.
Have they checked your Potassium levels? The fatigue might not just be from the anemia…when I was hospitalized it turned out that a lot of the fatigue was actually from dangerously low Potassium. Apparently, it goes quickly when you are frequently evacuating…Good Luck.
At the end of the day it’s your choice. You’re quite lucky to have doctors & surgeons willing to try other options first. When I was in hospital I noticed I was improving like within a day my toilet trips went from 12 to 2, however still runny, mucous blood. I had a surgeon come round, as they do to explain things. I did feel pressured not so much by the surgeon but the GI and other doctors to have surgery. Even when I got down to one motion a day. My blood tests kept coming back each day with my inflammatory markers going up & up, which I couldn’t understand if symptoms were better. My diet over a week continued to be an element diet, popper type drinks with your vitamins in it. It came to know surprise when I was lacking in certain vitamins for not being allowed to eat. I felt like I was being prepared for surgery without even consenting to it. They did not want to offer me remicade, they said I missed my window of opportunity?? I discharged myself, as I was being treated with the same medication as what I was on when admitted?? I now have a new specialist, who says I’ve been undermedicated for years. Here I am a year later & still with my bowel. My point to you is that it is wise to get a second opinion. I’m not against surgery, I was so close to signing the papers myself, but do believe it should be the last option. If you’re given the opportunity of time then use it to investigate. Ask questions with your surgeon & people who have had the surgery. I have to say that everyone I’ve spoken to live happy lives & feel so much better once they’ve had the operation, however all have them have said if you can hold on to your bowel, if it’s not life threatening, then keep it as long as you can. I wish you luck & we all know that either way, whatever you decide, things will be ok :) keep smiling
It’s a bit soon to have an ileostomy. Has anyone talked to you about Remicade? Last November I was hospitalized for 2 weeks due to UC and they sent me home with a December date for surgery as they didn’t want to do it immediately since my immune system was shot and my body had pretty much wasted away. I was sent home with A PICC line which is basically an intravenous feeding tube so I could put a bit of weight on before surgery. Somehow after 2 weeks in the hospital and two more weeks of bed rest I was able to return to work. By May I was fully recovered and having an early summer vacation at the beach. That was my first really bad flare and I’ve had this disease for 10 years. Don’t count your guts out yet. Give the pred time to work and your body time to rest. I know you feel horrible and are probably going nuts in a hospital room and just want to get your life back but try to stay level headed.
Thank you for sharing your story. I have had uc for almost 40 years and have been able to control the disease with a combination of diet- please read about the Specific Carbohydrate Diet for Chrons and Colits- and medication ( Asacol ). I believe that you mentioned in your previous post that you had recently quit smoking. UC is a disease of non-smokers. I know I will not make many people happy by stating this, but I was able to return to remission after a terrible flare ( in 40 years I have only had one bad flare) by smoking. I was 58 years old and had never been terribly sick with UC. I experienced an unrelenting flare and was scheduling surgery when I read reports from the Mayo Clinic and the University of Chicago about the theraputic effects of smoking. I remember sending my husband out for a pack of cigarettes and thinking “I have nothing to lose but my colon, so why not?” I figured that I needed to try something since the steroids were not working. It is crazy but within three days and a few cigarettes my symptons resolved. I now smoke one or two cigarettes a day and feel fine.
I am not a doctor but I have lived with this disease for many years. This has helped me.
Dear “This Guy”, Thanks for sharing your story with UC. I can surely relate to it. I am in my early thirties and was diagnosed with UC in March 2011 ( I was on the toilet for 3 weeks straight with blood, losing weight and afraid to eat anything, looking pale as shit at work). Anyhow, currently taking Asacol HD 800 mg twice daily for it with a folic acid “kicker” for avoiding anemia. The medication worked immediately and has been since with no side effects (may or may not work for you). I find the recently quit smoking part interesting because I also quit smoking and was later diagnosed with the UC. Maybe stress levels are simply too much for someone who quit smoking…….I know I personally had a difficult time with it (smoked about 3/4 of a pack daily for roughly 16 years!) IMO I do not recommend returning to smoking to alleviate UC. If you smoke 1-2 a day you already know you will end up gradually increasing to 5-6 a day………7-8 a day…..so on. But I imagine there may possibly be a link to UC and quitting smoking. If that’s the case then a healthier stimulant would be a better bet. I can remember a negative significant event taking place and then I would go and smoke a cigarette and “magically” that event was no longer a problem. Smoking simply took me out of reality for a period of time……….anyhow give Asacol HD a try, again may/may not work for you but a better alternative to surgery.
Hey “Guy”…I hope you are not on that damn Flagyl or Cipro…those 2 antibiotics are notoriously HARD on the gut. I had to stop all meds but prednisone (IV drip every 8 hours and NO FOOD but IV fluids for 4 days). Then started Pentasa then started to taper off the pred by 5 milligrams a week, sometimes holding for a few weeks until my body adjusted. I’ve had 2 of these hospital visits in 18 years. No surgery yet thank God. Pentasa and prednisone 5 – 10 mg once a year or so have kept me in check. Also what hospital system are you going to? Mayo and Cleveland Clinic (with satelittes in Florida I believe) are #1 and #2. Also I am trying to switch from Pentasa to Apriso but it seems the Apriso is less effective for me and I start to flare about a month after switching and have to go back to Pentasa. Good luck! Oh and no no’s during flares and try to avoid or limit when not: coffee, caffeine, carbonated beverages, alcohol…and especially antibiotics!