Confused and tired and depressed

[maimmie]

So I am now at a point where I'm wondering if an ileostomy is the way to go. Will it improve my life? can it make it worse??
I'll try to sum everything up as much as I can here.
I was on humira for a couple of years but developed fistulas well taking it and assumed it was not working well for me. I have a vecto-vaginal fistula and a few on the left side of my labia. I saw a surgeon who said the only thing to do was an ileostomy. I wanted to explore other options. I was able to get into a clinical trial for a drug called vedoluzimab. to participate I had to come of humira for a screening period. during the screening period while off humira I got alot sicker, couldnt eat, lost weight, developed two new fistulas on the right side of my bum. I started taking prednisone just to get to the first infusion of the trial drug and after the first infusion I thought I had seen some improvement of the fistulas on left side. the right have stayed the same.
Ive now had two infusions (they are once a month) and didnt notice much difference after the second. Ive also been taking cipro and flagyl for quite a long time. the doctor with the clinical trail told me to stop taking the antibiotics after my last infusion and so I tried that. within a few days I was getting much sicker again. couldnt keep any food in my body, was afraid to eat anyway for the pain when I went. I'm wondering if i put my body into some kind of shock? I was also trying to wean of painkillers at the time and I started taking a probiotic on the advice of a nurse. maybe just too much going on at once. I dont know.
So i started taking the antibiotics again and stopped the probiotic and upped my pred a little and hoped everything would settle down. it took a week but I seem to be back to where I was. I can eat better, bowel movements are still pretty painful, but they are happening less so thats better.
So anyway, I just find myself at a point now where I dont know if I''m doing the right thing anymore. they say the trail drug can take 3-6months to see if it makes a difference in your body. I'm not sure if I have that kind of time. I'm worried I putting myself through all this and my body is just continuing to fall apart more and more and i'll be worse off in the end. I wonder if i should have stayed on humira and had surgery since I'm in worse shape now and weigh atleast 20lbs less then when I was taking humira.
I've been looking at an ileostomy as a last resort and possible the worst thing that could happen to me. but now that I'm in such rough shape and barely able to have any life, is it the better option?
DO I give the drug trial more time? maybe third infusion will be the charm....
I'm feeling hopeless and depressed at this point. I'm terrified of having a stoma. I don't know if I can handle it mentally. I'm afraid I'll hate it and regret it. I'm afraid of going through more surgery and recovery time. I feel like I've lost my will to fight all this anymore.
I dont know if anyone can actually advise me here, maybe I just need to vent. I dont know....

 

[rkoll327]

Maimmie I am so sorry to hear you are going through such a rough time. I can't speak from experience, but my father went through something similar. He was sick, very sick, with ulcerative colitis. He was going to the bathroom sometimes 20 times a day, couldn't eat anything, then went through periods where he lost a ton of weight and had a lot of painful BM's. He was so sick he came close to death (and I was very young at the time so I didn't realize it was so serious until many years later) so an ileostomy was his only option. He has always said since that it was the best thing that ever happened to him. He is on no medicine, except for the absurd amount of vitamins and minerals he takes every day (must be nice huh?). He can eat just about whatever he wants without having to worry about the consequences. Doesn't have to constantly worry about finding a bathroom or not being able to leave the house. He said this surgery 'gave him his life back'. There are definitely some pros to having a stoma, and sometimes if you are as sick as you seem to be, it may just be enough pros to outweigh the cons. It is obviously not going to be easy for you at first if you do decide to have the procedure, but from your story I would say its something worth considering. Have you talked to any other doctors and gotten some second/third opinions?

 

[littlefreebird]

big hugs to you maimmie. speaking as someone who was in a similar position to yourself honestly if i woke up tomorrow in your position i would personally opt for the stoma. i was diagnosed in 2001 and struggled with crohns all through my teenage years, i was on all treatments available with no success, i went on infliximab in 2006 and had 3/4 years of remission. but in 2010 i flared, badly and never recovered, i developed a recto-vaginal fistula in march last year and by june was told the crohns had spread around my entire colon. my only option was to have it removed. i had the operation a month later as emergency surgery. i have not looked back ever since. the first question i asked myself was why the hell i had not done this sooner....it would have cut out years of uneccessary suffering.
i was silly for thinking that i was too young to have a bag and that having a bag meant my life was over. i can do everything and anything i ever done before and more!
i have a life now. noone knows about my bag. i've said it before, i don't want to undermine anyone that has a bag as the surgery was tough and there are challanges and issues i'm still dealing with but it is nowhere near as big of a deal as i thought it was going to be.
it's like wearing a giant plaster on your tummy- a small price to pay for a normal life.
please don't lose hope, life only begins after surgery.
any questions you have just ask!
good luck. xxx

 

[Terriernut]

Maimmie, you have certainly been going through hell. I wish I could give you a hug in person!

It is possible that the drug you are using will work eventually, but it sounds like you need some more help right now. Your fistulas sound pretty awful. Have you considered a temporary stoma? They aren't always permanent. Sometimes removing some bowel that is particularly diseased and resting your bowel with a temporary stoma is very helpful.

I can say that Stan has certainly given me a new lease on life in many ways. But it isnt an easy decision. What I would hope for you is that you can make the decision rather than having emergency surgery. It will help if you are more in control of the situation.

Yes, I think if you read through most of the posts here, we are very happy with our lives with stomas. We dont claim to not have issues! But overall, life is much better with a stoma! I wish you well lovely lady.

 

[maimmie]

Thank you again for your responses guys! I've read other posts by you Misty and Littlefreebird while I've been creeping around the site looking for info. Both of you seem so possitive and that makes me feel a lot better about life with a bag.
I'm feeling pretty bad today again. I saw my GI yesterday and expressed how hopeless I was feeling so he gave me an antidepressent. The problem is I took it for the first time this morning and it seems to be making me very sick. I have nausea and tons of D and just a sleepy feeling. I don't know if this is worth the trouble.
I think my body needs a rest from changes.
My doctor seems to think I should give the trail drug a bit more time since others have had success with it. I think I'll just see how long I can take things.
Right now I just want things to go back to my "normal" so I can relax a bit.

 

[Susan2]

Hi Maimmie

It's a hard decision to make, isn't it. I put it off for years and only gave in when my gastroenterologist said it was either that or die. I would probably have had an easier recovery time if I had made the decision earlier, but I haven't had any real problems since my proctocolectomy in 2000.

Although there are issues with a stoma - and some people have more than others - I think that the majority of people here feel that the procedure has changed their lives for the better. I can do all sorts of things now that I couldn't do before - I'm off to Botswana in a week's time. I would never have attempted that before i had the ileostomy.

What does your doctor mean by "a bit more time"?

 

[soretum]

Hi Maimmie,

I dont really have any great advice for you but just wanted to say I know how just you feel....I've been on a trial for the last 3 months or so, lucky for me I dont have fistulas but have been quite unwell, unable to work, losing lots of weight, pain, fatigue etc and really wondered at times if I was doing the right thing, so much uncertainty with a trial....although terrified of having a stoma I can understand getting to the point where you wonder if it's the right thing to do I've been having those same thoughts and had been thinking of pulling out of the trial at times, not really sure if it was worth feeling so ill when surgery could potentially fix the problem....but in the last few weeks things are starting to look better, CRP finally coming down, I've successfully come off steroids (for now, fingers crossed it stays that way!), things are definitly not perfect but I'm better than I was. My trial is for Stem cell therapy so different to yours but if you can hang in there then maybe you should give it at least one more infusion, if you dont you'll probably always wonder what if.

Hope that helps some, just wanted you to know you're not alone really

 

[SkinnyNinny]

I've been looking at an ileostomy as a last resort and possible the worst thing that could happen to me. but now that I'm in such rough shape and barely able to have any life, is it the better option?

Hey, it sounds like you've been through terrible times!

I woke up from emergency surgery, two days before a month vacation, with an ileostomy. I was pretty depressed. My girlfriend couldn't take it anymore and I had to move when I was strong enough. I'm 45. I've been waiting for a reversal for ever it seems, was supposed to be three months but its been nine now. Our medical system!

However, I feel lucky and have gotten used to it. I am pain free! Perhaps this means my colon needed a rest. It's not something that happened over night and I don't have nearly the kinds of issues you do. However feeling healthy and avoiding the whole BM experience is quite liberating. I don't get those feelings of urgency to get to a bathroom NOW! Those are gone. I have more control over waste. I do however have more visits to the bathroom.

My point being, you've waited a long time and it shouldn't be a last resort. It seems like it can be reversible. It takes some getting used to but if it gives you a break and helps you heal then its worth it.

Saw your last post. As for the drugs - I am wary of any drug. Piling them on like you have been is not good, in my opinion. An antidepressant? Come on, with what you've been going through anyone would be depressed! That is the cause, not a mental imbalance like those drugs are meant for. I am not on any drugs - and never felt better. My gastro wanted to put me on humira, Imuran, the list goes on...I said, well if I'm not showing any symptoms, how will I know if its helping? Plus I am working and getting around fine and I know the side effects will cause me to not work anymore. They really don't care. He said he's not pushing drugs on me, however he had no explanation for my questions and logic. It's insane. Slowly getting off drugs should be everyone's goal. Sure in the past maybe when I was flaring they might have helped. Yep I've been on antidepressants too and one made me feel suicidal. It's not worth the risk and in the six months it takes to get an appointment with the doctor you could be dead...wow, sorry for the extreme rant - but I really take a cautious view and am skeptical of doctors treatment. You need to be in control of your own life - handing it over to a doctor who has hundreds of patients and has questionable motives is soul crushing and dispiriting.

 

[maimmie]

skinnyninny, I completely agree with you regarding the antidrepressants and the piling on of more drugs. I'm not taking it anymore. One day of more sickness was more than enough for me!
I really try to keep myself informed and in controll of my treatment but I feel like I really have no idea what I'm doing anymore.
i have an appointment with a surgeon on Aug. 27th and I recieve another infusion before that on the 17th.
Baring any great miracle resulting from my next infusion, i think I'll be booking surgery. I have a funny feeling when the surgeon gets a look at me hes going to tell me I dont have a choice anymore anyway.
I'm not going to pretend I'm not completely terrified, But hearing from the people who have gone before me and lived to tell the tale is very reasuring.
I can see how the ostomy will give me a sense of control I don't have right now and I sort of look forward to that. I spend most my time in the bathroom as it is anyway! lol
just one more little vent, this is all very bad timing! My sons 4th birthday is coming up and he starts junior kindergarten in september. I haven't planned a party for him yet and I feel bad about that. I've also not gotten him any school supplies yet.
I can't seem to plan anything day to day with the uncertainty of my health.
i have a very supportive family that I know will help me and pick up the slack if I need them too. I just feel like I'm probably going to be missing out on some big experiences with my son coming up. I'm also pretty worried about figuring out school routine and stoma routine at the same time. ugh, I'm probably getting ahead of myself anyway...

 

[DMac]

Hi maimmie,

I can completely relate to your concerns and frustration. I too have had to wrestle with the do I or don't I have the stoma? And the constant worry about how my condition was impacting upon my wife and children. My situation became progressively worse and I required a life saving op, that consequently meant I had to have a stoma. I was in my mid 20s and I felt as though my life was over. It just seemed like having the bag was going to adversely affect my life forever.

Prior to the op I too was incredibly tired, always in pain and dealing with constant trips to the loo. At one point I couldn't lie on my side for over a year, because I would literally leak and I had to wear huge pads etc... I went through some dark times and the emergency op saved my life in more ways than one. Don't get me wrong, it's not easy adapting to a life with a stoma and I have endured leaks and occasional problems, but my quality of life has improved radically.

I feel your pain and I completely understand what you're going through. It is a cliche to say this, but you are on a journey and if having a stoma is the end result then I just want to encourage you that it will get easier and can give you an excellent quality of life. I wish you all the best and hope you get better soon.

Take care

 

[Jaano711]

Hi Maimmie

Oh I do feel for you. It is awful to have to choose something that you don't want. I had too. I kept hoping that I would get so sick that I would just wake up and it would be done and I would just have to deal with it. Instead I had surgery on my fistulas, and when I awoke was told that it was time to plan the big one. I can let you know that I am about to have an iliostomy done with butt removal on Friday, hell it is only 5 days away. IThink the thing that hurts the most is that it is, permenant, irreversible, and because of that it shatters my dream of oneday being cured and having all my 'bits' function correctly.My medical history is very similar to yours and I had no other options left available and I don't have time to keep getting sicker while I wait. I am also so over faces coming from every nook and cranny that it is not supposed to, and always feeling messy and dirty. This has had a huge impact on my self worth and confidence ( I have very similar fistulas as you describe)

I have had 6 weeks waiting for the surgery and can confide that while at first I called the operation defeat by the dreaded disease I am now looking at it as hopefully being my liberation from a life chained to the toilet, and am hoping that I can resume some of my long lost favorite pastimes of cycling, hiking and camping.

I do admit that I still have bad days and am sure the next few will be mentally horrific. I am unable to sleep due to feeling anxious, and my mind just not switching off. I awoke this morning and started balling, I have been very strong over the past few weeks. My husband and kids are being very supportive. They are all well aware of what I am going through and all are being very reassuring. Even my 6 year old who came and sat on my knee this morning and told me - that he would love me just as much when I loose my bum.

I now just want to fast forward to 6 months time when hopefully I am well on the mend and I can start having a way better quality of life.

About your sons birthday, I had to can any plans for my twins 11 th birthday on 2 July and have said we will try andhave a Christmas party with there friends. For my 6 year old whose birthday was a week ago I took the easiest work free option and had it at a play centre that catered. Him and 29 mates had a great time and I didn't have to organize anything but the invites. I know that as a mother you probably feel a lot of guilt from this horrid disease taking precious moments from you and your family, I know I do. It is funny though as I have Beentalking to my twins about it all a lot lately and it was nice to hear that they never once blamed me but they had a lot of anger about the disease. Amy my daughter has even decided that when she grows up she wants to develope a accident that will stopp people getting all the terrible diseases. I hope she does. I think that this type of guilt is wrong as all parents whether well or sick have to miss certain events due to forces out side of their control, and carrying around guilt because of it will only make you feel worse.

I do understand to exactly how you are feeling, and I can only offer that advice that once you have made a decision, try and not have too long a wait for surgery, as the waiting is definitely mentally challenging. With the surgeRy only days away I am starting to get anxious and having doubts.

I want to send you a big hug and hope that you get better one way or the other.

Janette

 

[maimmie]

Janette, its so great to hear from someone who can so closely relate to my situation.
Please keep me updated on your progress though this journey. I'll be thinking of you and wishing you luck on your surgery. hopefully it will bring relief and recovery will be as quick and easy as possible.