HealingWell
Search Close Search
☰

feel like I am giving up

Support Forums
>
Ulcerative Colitis
✚ New Topic ✚ Reply
12
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 9/2/2013 12:11 AM (GMT 0)
So I am finally seriously considering having surgery at the end of the month and for some reason I feel like I am giving up- throwing in the towel. I think because my friends and family wanted me to go into remission using the natural methods. Its been at least a full month to month and a half since I have changed my diet and at least 2 weeks since I have been on a full natural supplement plan. I am currently on 40 mg of prednisone and will be tapering to 35 mg tomorrow, but this past week I feel like I am on a slow decline. Tiredness and feeling worn out all day is coming back, the pain is coming back and increasing at night with a vengeance. I haven't had to take pain pills in over a week or two and now I have to take 2 at night just to sleep. Not to mention over the past few days, the blood has returned and its been gone for at least 2 weeks. I still have a couple more weeks left of my supplements, but I just can't get past the tug and war feeling of making a surgical decision. I want to get back to my life. It's been over a year since I have felt "normal" and I really want to get back to work. At this rate, I may not be feeling better in time to go back to work at the end of the year.

I just needed to air out my thoughts and get your opinion-
am I throwing in the towel?
Is it too soon for surgery?
Posted 9/2/2013 12:25 AM (GMT 0)
Only you can answer if you think having surgery is too soon for you because I don't know your whole UC history but deciding to have surgery is NOT throwing in the towel. It's quite the opposite.

I just knew when it was time. My quality of life sucked and I wanted my life back. I took charge of the situation....I did not give in. All the best to you.
Posted 9/2/2013 12:55 AM (GMT 0)
I absolutely hate the euphemisms that we use around having UC. That you are "fighting" for your life or your colon, that surgery is "giving up" -- total BS. You have a disease. You have tried some treatment methods. Surgery is another treatment method that perhaps you are ready to try. Surgery is NOT easy and I think you'll see if you go through with it that there's no way someone who has experienced the surgical process could call it "giving up"... BUT it can have fantastic results and has the highest success rate of any of the UC treatments available. The biologics have like a 30-40% success rate, while surgery has a 95% satisfaction rate. It is pretty amazing to think about it that way!

What your friends want is for you to be happy and healthy. If any of them have an ulterior motive and ONLY want you to achieve happiness and health through natural methods and diets, then they aren't true friends.

Surgery gave me my life back, full stop. It was an easy decision for me because I truly believed that with only medical interventions (you can see all the drugs I tried in my signature... at the end I was on many of them at the same time) I was going to die. I know it can be harder if you feel like you're hanging on, but ask yourself what kind of life you're hanging on to and if you have hope for a better one if you keep doing what you're doing.

I'm happy to answer any and all questions about surgery if you have them.
Posted 9/2/2013 12:59 AM (GMT 0)
Are you on drugs after surgery?
Posted 9/2/2013 1:02 AM (GMT 0)
Pluot and ByeByeU,
Thank you so much for your replies. I think my family and friends don't fully understand what its like to live with this disease day to day. I think they want to understand and believe that not working and resting all day and changing my diet will completely cure it with time- which may be the case, but this is not the life I like to live.

I have been researching the surgery more and more and i think the part that scares me the most is the temporary period with the bag, both physically caring and dealing with it and psychologically dealing with it for a few months. What would you say was the worst part of your surgery Pluot?
Posted 9/2/2013 1:16 AM (GMT 0)
are you allergic to 5-asa? have you tried rectal meds? other biologics? checked you iron levels?
Posted 9/2/2013 1:18 AM (GMT 0)
It's probably too early for surgery unless your colon is in serious condition. It a way, it is giving up.

People being human, want the fastest, easiest way to achieve a goal. Weather it's the most logical or efficient sometimes has no bearing.

The medical industry has presented you with an option. We remove your colon and you *might* get back some your normality. Be forewarned, this 95% success rate is meaningless if you end up on the 5%. You ended up with UC on lower odds that this. Once, you end up with a no so successful surgery it is very difficult to reverse stuff. Well, there is no reverse, you no longer have a colon and you have to deal with the new normal.

I will add an analogy here. Say you play a poker hand in a serious tournament and both an opponent and you are in a all in situation for all your chips. One goes on and the other busts out of the tournament. You hold the upper hand with a made flush and the opponent has a 4% chance to make a full house to beat you on the river (last card). The opponent gets really lucky and catches the card he needs to make the full house and you bust.

So, you busted on a 4% chance, very unlucky, but life goes on and you'll play another tournament. Nothing really important in the grand scheme of things.

Now, to bring this in context, if they ****up the surgery and you end up in the 5%, you're in serious trouble and the stakes are incredible compared to a poker game.

I am pro surgery because it's one of the possible treatments, but it is important for your sake to try anything possible. I would give it a year or 2 or 3 of trying various things. Of course, you'll always monitor your condition to see you're still doing ok and are not in danger.

Remember one thing, and this my belief and not necessary shared by other. This disease could very well have such an easy cure but not available in this period of time. Maybe in 10 years, 50 years, 100 years. It is ludicrous to have surgery, to remove an organ where a "cure" might be in the works.

Unless presented by concrete facts of what is really going on, nobody can say otherwise.

I was talking about this very topic with the GI research specialist in Hamilton and a similar issue happened with H.Pylori, a bacteria which created ulcers in the stomach. Back in the 50s and 60s, people didn't know what to do and some were having an operation to remove half of their ulcerated stomach because at the time, that was one of the procedure available.

Fast forward to now, they have identified the culprit and it is eliminated via a specific antibiotic.

Now, for U.C., the case might be more complicated, but it makes one wonder.

Whatever path you take, you must give it a lot of thought, one of which is irreversible.

I struggle with those very thoughts, every day.
Posted 9/2/2013 1:37 AM (GMT 0)
Honestly the temporary ostomy was NOT the worst part for me at all. There is definitely a learning curve and it was stressful going home from my first surgery worried about having to care for it myself (I cried the first time I had to change my wafer by myself), but after the h--- of UC, having the ostomy was a relief. I was able to eat freely -- even really spicy food, which even healthy people with colons have to be careful with! -- and never ever have to worry about pooping again. Through 7.5 months of having an ostomy I had one leak ever... compared to my UC flare when I was functionally incontinent (in diapers for 2.5 months), this was awesome! I became very adept at dressing around my ostomy, I was able to go jogging and biking with it, I went on a beach vacation, I dated, I went back to work, etc etc. You name it I was able to do it with my ostomy.

The end ileo was so great that I very seriously considered making it permanent instead of getting the j-pouch. It was a hard decision but I knew that if I didn't move forward with the j-pouch I would question the decision for the rest of my life... at the end of the day, as much as I liked life with the ileo, I just *wanted* a j-pouch.

The hardest part were the surgeries and physical recoveries themselves, especially the second surgery (I had three, listed in my signature). You can also read more details about the surgeries on my blog. Recovery from the second surgery was simply incredible painful. The pain was worse than UC (but very different). I had a plastic tube up my butt for five days straight. I had a bikini cut incision (like for a C-section) and that was very painful at first and continued to hurt for about a month after the surgery. It was hard to sit up in bed, walk, obviously do chores, bend down, etc. I was at a great hospital and my parents took amazing care of me after the surgeries, but it was just... hard. I think people also do not talk enough about the mental challenges of surgery and general anesthesia. Afterwards I felt a lot of brain fog, sadness, frustration, etc. Sometimes I cried for "no reason" (obviously very real reasons!). It's kind of like just being overtired but all the time. I went into therapy after the first surgery and it helped a lot. I also had to taper off of prednisone after that surgery and I'm sure that made my recovery more difficult too.

I couldn't disagree with Somedude more. I know he thinks my opinion doesn't matter because I had a good surgical outcome and he is afraid of having a bad outcome. Well, whatever. I know a lot about the state of UC research and I feel confident we are not <5 years away from any kind of "cure". And if we find a cure in five years -- or even one or two, honestly -- I will not regret my decision. Why should I spend precious years of my life suffering when I don't have to? Let's say a cure is discovered in 25 years: would I rather look back on 25 full years, albeit without a colon, or know that I suffered until the age of 50 but NOW will be UC free? UC already took a year of my life. I can do SO MANY THINGS without my large intestine. I can have a career, a marriage, a family, a social life. NONE of those things were possible with my colon. Life is precious and I would NOT waste my time wasting away hoping for a cure.
Posted 9/2/2013 1:47 AM (GMT 0)
I am not in your position but it seems so final. You can't change your mind. I wish you strength and wisdom.
Posted 9/2/2013 2:03 AM (GMT 0)
ya, chuck the towel and get your life back if that's what feels right to you - I would think in the big book of uc rules, opting for surgery this soon might warrant an infraction of some sort - but since it's your uc rule book and you handing out the red flags, who gives a poop if it's been 6 years or 6 months - do what's right for you -

+ we need all the special teachers on active duty :-)
Posted 9/2/2013 2:06 AM (GMT 0)
DMC - I took Imodium after my Step 2 surgery because the loop ileostomy causes fast transit. Since takedown I am drug free. I take a birth control pill and a Vitamin D supplement.
Posted 9/2/2013 2:10 AM (GMT 0)
I checked out your blog, it's a grea resource. Congrats on your success.

I do hope that Soy is right and that there must be some guidelines or something to ensure it is not done because one is tired.

I only want the best for you younger women.
Posted 9/2/2013 2:10 AM (GMT 0)
I checked out your blog, it's a grea resource. Congrats on your success.

I do hope that Soy is right and that there must be some guidelines or something to ensure it is not done because one is tired.

I only want the best for you younger women.
Posted 9/2/2013 2:28 AM (GMT 0)
"I only want the best for you younger women."

I thought you were one dmc ? you had me fooled !
Posted 9/2/2013 2:29 AM (GMT 0)

soystud said...
- I would think in the big book of uc rules, opting for surgery this soon might warrant an infraction of some sort )

Yes, infraction. lol
Posted 9/2/2013 2:32 AM (GMT 0)

Pluot said...
I take a birth control pill and a Vitamin D supplement.

Ohhhh man, I was hoping to be drug free also. I have to take a birth control pill. grrrrrr.
Posted 9/2/2013 2:32 AM (GMT 0)
I know when I'm flaring it's easy to feel really depressed. Maybe you just haven't found the right med combination yet. Did you try Uceris? Have you tried diet? Fecal Transplant? Your info provided said you've been diagnosed since May of this year. That's not a very long time compared to others on here who are dealing with this. I've had symptoms for 18 months now and am just starting to find relief in the past month when I went off my meds and did SCD and FT. FT is so easy to do if you have a willing donor and it has provided very good results for many people who have done it.
Maybe you should look at some other possibilities: med, diet, probiotics, etc - if you feel up to it, that is.
Posted 9/2/2013 2:43 AM (GMT 0)
Don't worry Somedude, you only need it if you're sexually active which I assume no one could stand with you...

EYYOOOOO jk!
Posted 9/2/2013 2:48 AM (GMT 0)
hahahah
Posted 9/2/2013 2:49 AM (GMT 0)

DMC2011 said...
Are you on drugs after surgery?

None.
Posted 9/2/2013 2:51 AM (GMT 0)

Adventureuc said...
I know when I'm flaring it's easy to feel really depressed. Maybe you just haven't found the right med combination yet. Did you try Uceris? Have you tried diet? Fecal Transplant? Your info provided said you've been diagnosed since May of this year. That's not a very long time compared to others on here who are dealing with this. I've had symptoms for 18 months now and am just starting to find relief in the past month when I went off my meds and did SCD and FT. FT is so easy to do if you have a willing donor and it has provided very good results for many people who have done it.
Maybe you should look at some other possibilities: med, diet, probiotics, etc - if you feel up to it, that is.

Thank you so much for your response AdventureUC and somedude- different perspectives help, especially perspectives from those that don't agree :)-

I have actually been having symptoms since Aug/Sept 2012- but didnt go in to see the doctor until May which was when I was officially diagnosed and then went dramatically downhill. As far as meds, I initally tried Liada (both oral and enema versions), I have been on prednisone since May, I tried remicade and doctors decided my body wasnt responding to that and they were saying my body wasnt responding to the oral steroids as well. I am now on 6th Humira injection and my dr wants me to try Imuran or do surgery, as he also thinks I am not responding to Humira.
I have completely changed my diet. I started off wheat and dairy free- then moved to SCD and am working with a nutritionist that has me on a really strict, supposed to be easy on the gut, diet. I can probably count the # of food items I eat on my two hands- but overall, im completely grain free, dairy free, and sugar free.
Posted 9/2/2013 2:59 AM (GMT 0)
I an old bat! 53! :-)
Posted 9/2/2013 3:01 AM (GMT 0)
I'm sure I will get flogged for saying this but my belief is diet has squat to do with it when you have severe UC. BUT it never hurts to try. I tried diets too. I tried all I was willing to try before having surgery. I drew the line at Humira. When the Remicade failed that was it....I was done.
Posted 9/2/2013 3:21 AM (GMT 0)
na, that's young bat D !
Posted 9/2/2013 9:26 PM (GMT 0)
You can take Humira up to 80mg per week. When I asked my GI doc, he didn't know about this. Most people start at 40mg every 2 weeks. So there are a couple of steps remaining with this drug if that's where you're at.
✚ New Topic ✚ Reply
12