Feeling very hopeless and angry

I just had a colonoscopy last Friday to determine if my GI symptoms were a result of C.Diff or my ulcerative colitis not responding to Humira. My doc was pretty confident it would be C.Diff due to the repeated courses of antibiotics I have been on for sinus infections(so much so that he put me on Flagyl before the scope) and so when I had the scope, he was definite that what he saw was C.Diff and prescribed Vicomycin and off I went. My GI symptoms went from okay to bad this past weekend with a fever sprinkled in there as well, and even though they seemed to be getting better, I did have a fever this morning and so got ahold of my doc to see what this meant.

My doc calls me and tells me that my pathology reports indicate I do not have C.Diff at all, but that I have very active colitis. So now he wants me on Prednisone, which I have managed to avoid for a couple years. He also wants me to start taking Humira every week instead of every other week, to basically exhaust this route completely before we give it up altogether.

The thing that scares me is that he said that compared to my scope in January, this scope looked "much worse," which basically means the Humira is not working as I went on after my last colonoscopy. Imuran didn't work, now the Humira most likely isn't working..we are running out of drugs. My doc, at least right now, didn't sound too hopeful that Remicade would work that much better if Humira is not. We did have a talk about how I am getting closer and closer to surgery, and that oftentimes when Humira stops working, that's an indicator that surgery might be the best bet.

Thoughts, ideas, prayers, anything? Not in a good place at all right now.

There are some alternatives to consider: diet modification (Specific Carbohydrate Diet is one), LDN (low dose naltrexone), FT (fecal transplant-a GI in Rochester has started doing them in US).

Surgery may not be a terrible choice. It's up to you.

And you mention Canasa enemas, have you tried mesalamine enemas also? Many including me have had good response to this type.

I know how disheartened you must feel because I was there December 2010, it's a sad place to be. All I can offer is that you DO have choices left and none of them are as terrible as death which other diseases can cause.

P.S. Entocort is a steroid that is better than prednisone. Ask about that instead. I took it with few side effects.

meredithf,

Sorry to hear your results. It sucks. But now you have to dust yourself off, and empower yourself with knowledge... do your homework on FT, LDN, Diet modification, and see what makes sense. I agree with the others, to me surgery is the last choice.

IMO, I would try Diet, LDN, and FT - in that order.

Don't let this get you down. Sending you a big hug.

I was in your same position. If you feel like you want to keep trying everything, then go for it. But just know that as scary as the sound of surgery is, it can be a blessing in disguise. It was for me. Not fun to go thru, but so worth it in the end. You will be done with drugs and you will never have to look back into a toilet bowl filled with blood ever again. Best wishes to you.

I totally understand how you feel. It's so frustrating to try all these things and then they fail. I hope you get something to help you soon whatever that may be. Best wishes to you. :)

@ByeByeUC and others, out of curiosity, what makes you visit this forum if your UC is gone? I have to admit I am only on here when I am sick and/or need support. If my UC was gone, I might just want to wash my hands of it completely, though it is great to see you had good surgery results.

@KiWi44,

Thanks for your support. In the past, prednisone(starting at 40mgs), has worked pretty well, so I did start that already in hopes of healing and tapering soon. I am inspired by what you are saying about being 'at the colectomy door' and things getting better. I figured there was no going back, maybe just because I have been sick on and off since December and never been totally better and so my faith in my body is kind of shot.

Meredith, just curious to know if the antifungal has made any difference? If so, you might want to ask your doctor about trying a prescription antifungal that would pack more of a punch than an OTC.

I totally understand feeling discouraged and frustrated. It took me over a year of solid flaring to find the right combination that worked for me, but once you find what works for YOU, you can learn how to manage your UC for the long haul. For me, it took the right ASA, dietary modifications, supplements to reduce inflammation and heal the gut, antifungals and probiotics to rebalance the gut ecology.

I'm one of those who hasn't had a bad flare in years, but I hang around here occasionally and contribute what I can because I remember what it was like to feel frightened and hopeless. It's wonderful to have a place like this to share with others who've been there.

@ByeByeUC, I thank you for thinking of all of us flailing out here looking for answers. If in that position, I definitely plan to follow your lead.

@princesa, I admit that in the last probably two weeks, since I have not been feeling well, I have been taking the minimum amount of pills overall to just give myself a break, so I have not been consistent with the antifungals at all. I don't think I took them long enough to see any difference, and all the antibotics I have been on might have cancelled out any benefit as well. As soon as the prednisone I just went on kicks in more, I am going to get back on with all my supplements full force. My understanding of taking antifungals and doing an antifungal diet is to rid the body of extra yeast, of which prednisone naturally adds more yeast to your body, so don't know again what they may do to help my UC, but I guess they couldn't hurt.

I was in your position for awhile, learned about food sensitivites/intolerance, was taking a bunch of supplements and was on plain old sulfasalazine and was good with just that(an enema here and there) for over a year, even through a pregnancy. Postpartum, things started to go downhill slowly, partially from not taking care of myself as much I should have been(2 kids now) and it just kept getting worse and about six months later I was in a wicked flare that started at the end of December that I have not truly shaken yet. I also have had 4 sinus infections in that time as well, so my body has been in a big hole that I am desperately trying to get out of. I truly hope for you that your situation stays the same--don't get lazy with all you are doing, that was my undoing and then it just went off the rails from there.

@imagardener2, I have used enemas in the past and sometimes now to help with bleeding. Guessing I can lay off those for awhile as the pred will help with that. Gotta look at the bright side, right?

meredithf said...
Thanks for your support. In the past, prednisone(starting at 40mgs), has worked pretty well, so I did start that already in hopes of healing and tapering soon. I am inspired by what you are saying about being 'at the colectomy door' and things getting better. I figured there was no going back, maybe just because I have been sick on and off since December and never been totally better and so my faith in my body is kind of shot.

You're most welcome.

I've repeated this many times, years back the initial dose of prednisone for me was always 60 mg or even 80 mg. Now the GI docs have decided that 40 or 30 mgs is the new protocol. I'm not sure it bites, especially with us with longer battle with this monster.

The combo that has worked for me for the past four decades is prednisone, vegetarian diet and probiotics. Your mileage may vary.

Every UCer ought to educate themselves on the colectomy. Some 25 to 40 percent of UCers will have colectomy for some reason or another. The percentage increases the more severe the UC is. Proctitis people posses the percentage in about 13 % and pancolitis UCers close to 70 % within 13 years.

This forum is lucky to have several colectomy experts to provide us info about their experience. Since I read their stories, I've have changed my mind, and I'm one of the colectomy-last posters. I've always preferred prednisone to remicade or colectomy, and my GI docs started to push those several years ago. I've been in remission for years after that.

We're a very diverse group. We need to be realistic also.

Hopefully you'll fare well the rest of you life with you meds.

All the best.

meredithf said...

I have looked into the SCDiet, and when I saw a nutritionist a couple years ago, she diagnosed me(via a blood test)with a bunch of food intolerances, and because this is more personally based than the SCD I am going to stick with it, as avoiding these foods has helped a lot.

avoiding alergic foods will make you better.
but SCD is based on another principle - that bad bacteria can trigger auto-immune response. starving those bacteria by avoiding complex carbs will resolve in a regulation of the immune system since there will be a re-balance of gut flora.

so if you are thinking about diet - do the diet and avoid the alergens too.

anyway, i've read a lot of good posts here, people offered a lot of support and alternatives :) you just do what you will feel will make you better mentaly and phisicaly.

I agree with ByeByeUC- I definitely knew when I was ready for surgery. By the time I came to my final decision, I wanted surgery so badly that I got a bit annoyed when people would try to talk me out of it or when they would mention some supplement that was a certain fix for UC that I should quick try. They had no idea how much research I had done... or the incredible amount of thought that I had put into the choice. I was done. I was tired of being ill and just wanted my colon out so I could move on to living life to its fullest.

For me, surgery was one of the best decisions I ever made... but I was very logical about it. I did as much research as I could in during the short time I had to make the decision. I called acquaintances that I knew had gone through either permanent ostomy surgery or j-pouch surgery to hear about their experiences. One even came to my hospital room to show me her appliance. I talked to people who were on Remicade. I emailed complete strangers with ostomies who were into the same types of outdoor activities I loved. I searched out and read about every resource I could find on the net. I took all that information and put it through my personal filter of goals and values. I did a lot of soul-searching and really looked at what choice was the best for what I wanted out of life... what I cared about... what fit best with activities I loved most. After all that is when the decision for me became clear. I wanted a permanent ileo. But for other people, the results of their research and their for goals may lead them to other treatment options or other surgery types.

Truth is, drugs and surgery both have risks. For ileostomy surgery, the most common complications and risks tend to be things like slow incision healing (this is the only complication I ended up having so far and it resolved), hernias, infection, appliances that have trouble sticking, skin irritation... food blockages. All of these can be remedied through some pretty straightforward steps that surgeons and nurses have a lot of experience with. When I had horrible joint pain from one infusion of Remicade develop, the doctors were quite perplexed. They had no idea why it was happening, no idea how long it would last or if it would go away, an no idea of what to do about it. I pretty much had to wait it out and hope it went away. It all felt very experimental, and I didn't like that. So I was drawn to the more predictable nature of the surgery option. In fact, this is the reason I chose a permanent ileo instead of a j-pouch... I felt that the results of this surgery type were more predictable. I just wanted to get my colon out, learn to live with my appliance forever and move on with life. Again, this was based on my values, and another person may come to a completely different choice. I will say that now that I am 8 months out, I am 100% happy with the route I chose. The results of my permanent ileostomy are all that I had hoped for, and I am already getting my life back in more ways than I ever would have imagined for this soon after surgery. I am out hiking, backpacking, running, snowboarding and working full time in the career I love again. Life is very, very good.

As far as resources... I am not sure for the j-pouch route. For otomies, most larger towns have chapters of the United Ostomy Association of America. They have monthly meetings, and it is not uncommon for people who are contemplating surgery to stop by a meeting to hear people's stories and get info. The local chapters may also have visitors who will come out and talk to you. There is a book called the Ostomy Book which has good info, though it is a little outdated. A few of my personal favorite web sites are:

Uncover Ostomy- http://uncoverostomy.com/
Great Comebacks- http://www.greatcomebacks.com/us/stories/community_main.shtml

Both share stories of people who have successfully gone through surgery and living life to the fullest.

I also really like the Pheonix magazine put out by the UOAA for the same reason (United Ostomy Association of America)- http://www.phoenixuoaa.org/

Take your time if you have the luxury of that, but also be proactive in getting the resources and information you need when you do have the opportunity. Go talk to a CR surgeon... you don't have to be knocking on surgery's door to start the conversation. It is fine to make a consult just purely for information. Then if it ever does come to surgery for you, even if it is a while down the road, you will really feel good knowing you have the knowledge to make a wise decision... and a surgeon you have already worked with and trust.

meredithf,

I am so sorry you are going through such a hard time in your life. I have been there and know exactly the hopelessness that you are feeling. I was on Remicade and after the 3rd treatment I had D worse than ever. I had no idea what was going on.. I thought Remicade was supposed to make me better not worse. Called the doc.. they did a scope and sent me directly to the hospital (I was down to 103 lb. at 5foot 5). I had never felt so horrible. Before all this I had done the stool test 2x for cdiff (came back negative). While in the hospital they had me do 3 more stool tests for cdiff and finally on the 3rd test it came back positive. So, for me it took 5 stool samples before the c-diff showed positive. Maybe that could be what is going on with you?? I left the hospital thinking "yay! I have c diff, this will go away with antibiotics and I will be better".. Well, it must have royaly messed up my colon because I never really got better. Just fed up with living thirteen years of my life having UC I decided to have my colon removed and get a life again! I am on my fourth month with an ileostomy and I do not regret it for a second! I can actually go outside and play with my kids again. I have no worries about where the bathroom is anymore.. it's awesome! There are slight little moments when I wish I could be normal like everyone esle, but this is the hand I was dealt and I came out of it as a stronger person. Every once in a while I look at a picture I had taken of myself of when I was at my sickest 103lb. and then I remember.. yeah, this is why I had the surgery. You forget that you were so sick sometimes. So, don't worry if it comes down to surgery, it isn't as bad as everyone thinks (I used to say I would NEVER EVER have my colon removed). No one even knows I have an ileostomy unless I tell them. I pray that God will look after you.. give you strength and wisdom to follow the path that is best for you. May he take away your hopelessness and anger, filling you with love and peace.

P.S. Over the thirteen years I had UC, I tried raw food diet, vegan diet, and SCD. They work for some, but not all.. I think I was too far gone for total healing.

Sending hugs your way! :)

Thanks all again for the info about surgery and just coping in general. It is amazing to know there are so many kind people out there who really 'get' this. I think I need to take a little step back from all this for a little while and try to relax--the prednisone is helping my colon, but is also doing a number on my anxiety. Nothing is imminent right now, I do have a couple more options out there before we get to surgery. I am not opposed to surgery at all if that is what will give me my life back ultimately, it was just hearing how much worse my colon is that really mentally unwound me a bit. I am going to paste and save some of your posts, especially those about surgery, to look over again when I am ready.

Signing off for now and hoping for some peace.