Scared and running out of options

[okhoney]

I'm not sure where else to post this, but I thought the stoma sub-forum might be the best place for the advise I need.

Treatment wise, I feel like I'm nearing the end of the line and while my doctor and I haven't talked about surgery in a few months, I have a feeling that we're headed down that road. For a brief history, I have severe peri-anal crohn's. The Crohn's is limited to my colon as far as we can tell. I have a fistula and in the last six months have had a peri-anal abscess drained three times. I'm intolerant of mesalamines (which didn't work anyway, so what's the point), cannot take immuran or 6-MP as my body cannot tolerate those. Flagyl and Cipro only work to make my seemingly chronic diarrhea worse. I tried Remicade for a total of 3 infusions and after a few cases of anaphylactic shock and everything getting worse instead of better, we agreed that Remicade and my system do not work well together. I was put on Humira and was supposed to take methotrexate injections as well, but because of the methotrexate shortage I can only get it in oral form right now. So currently I am on weekly Humira shots and weekly oral methotrexate. After the loading doses of Humira, I did start to feel better and notice some improvements. The constant pain in my anal area finally started to go away, which was a small victory, but I just couldn't seem to kick the diarrhea no matter what. Now, I've had a couple of little flare ups (in the midst of the overall flare) that have me really worried. This weekend I've been so sick and some of the anal pain and issues seem to be making an appearance again. I just can't seem to get in remission. For every one or two good days I have, I have 3 or 4 bad days. For every step in forwards, it seems like I take 3 steps backwards. I have made overall improvements on the Humira, but I'm still sick most of the time. I've been on the Humira for almost 3 months and I thought I would have made more progress by now.

I took a leave of absence from work right before I started the Humira and I'm supposed to go back to work on August 6th. I've already extended the leave twice in hopes a few more weeks would improve things. I honestly don't foresee things getting much better before I go back, but am afraid to ask for another extension. My doctor has brought up a temporary ileostomy before and I'm wondering if that's the only choice I have left. It really scares me. I feel like I don't know much about it and as a 26 year old female I have a lot of emotional and psychological fears associated with it. I live in NY and all of my family is out of state so I would be mostly alone in dealing with all of this. The whole idea of the stoma freaks me out if I'm really honest. The stoma freaks me out more than the bag!

I'm so exhausted of waking up everyday in pain and dealing with diarrhea and blood and mucous. I really want things to be better, but at the same time I'm really afraid of the surgery. I'm also afraid of taking more time off from work since I've already been gone for three months and feel like I'm not that much better than when I left. I am desperate to have some sort of normal life again. I know that medication wise, I'm almost at the end of the road. Would a temporary ileostomy really help me to get in remission? Any advice would be much appreciated. I am going to the doctor this week, but I would like to hear from people who have been through it.

 

[Keepingfaith]

Having surgery doesn't mean medications have failed you, it's just another treatment option & means the other medications just didn't work for your disease at that time. It is deffinately possible(and highly probable)you will go back on one or two of the previous medications you have tried after surgery(if you have it done). Have you tried Cimzia? It has been proven to work when none of the other biologics couldn't because it's the only treatment for Crohn's with PEGylation. Pegylation keeps the medication in your body longer.

I've never been in remission and the past 3 years have been miserable so I understand. Surgery isn't an option for me at the moment because my disease is too widespread. Has your GI brought up the surgery? People who get an ostomy in circumstances like you are usually very relieved after surgery & wonder why they didn't get it sooner. I would push for surgery, after research, with your GI. When a patient brings up surgery, then Gastroenterologists know that it is time to take that next step.

Sorry you've been feeling so bad, hopefully others can chyme in as well. *Hugs!*

 

[Amber82]

Oh man I really wish I could hug you right now. There is nothing worse then the unknown. My surgery was worth it and I feel so much better! I just wan't you to know I'm thinking of you and I really hope you feel better soon!

 

[Terriernut]

I am so sorry you are so ill and in pain. I also understand your fear of surgery. No one is going to say they arent afraid of that!

A temp stoma will probably do the trick in giving your rectum a rest. However, dont wait til it's an emergency. If you try and get the surgery done with a surgeon who does it lapro, your recovery time will be much quicker.

I will admit, the first several times of looking at 'Stan', I got a bit faint. (I've never fainted in my life!) But now we are quite used to each other. He's a part of me! (mine was an emergency...bit of a shock!)

If this will enable you to heal up, and lead a full life (and it will) it is worth it!

Please keep us posted?

 

[smallfry]

I am sorry your are having such a hard time. I completely understand and am actually in pretty much the same situation. I go through my phases of emotional carnage too. My crohns is all very low in my colon as well tho never actually told I have perianal crohns. I have fistulae and tracts in my rectal vaginal septum and currently have a seton to help drain one of them and one is open and draining on it's own. Have they ever mentioned putting a seton in to help with draining so it doesn't keep filling up? I am currently thinking about a temp. ostomy to help rest the area as well since my surgeon recommended it last time I saw her.
I am currently on long term disability because of all this crap. and I know how hard it is to be at home all the time stuck trying to find a comfortable position and keep from going stir crazy!!! Good luck at your appt. and keep me updated if you don't mind!

 

[moogie]

One thing I've learned with this plague is never to give up.

I know the pain you endure everyday. We endure it too. Some days I wake up in the morning and I dream of having a life without pain. Maybe one day it will come.

Stay strong and explore everything and then choose wisely.

 

[bigtruck]

One thing I've learned with this plague is never to give up.

I know the pain you endure everyday. We endure it too. Some days I wake up in the morning and I dream of having a life without pain. Maybe one day it will come.

Stay strong and explore everything and then choose wisely.

Truer words never spoken

 

[PattyLynn]

I was terrified when I found out I had to have an ileostomy. In fact, the doctor gave me a choice - ileostomy or die within a month. I actually had to weigh the pros and cons of each! At the time, I was single (no boyfriend) and I figured having a stoma would make me so grotesque that I would be alone for the rest of my life. Well, I did have the surgery and my life changed completely. My anal/vaginal fistula healed very quickly and the excruciating pain I experienced on a daily basis was gone. Although the road has had many rough spots for me (and for so many others), I truly believe that having the surgery was one of the smartest decisions I've ever made. Of course I would rather just be "normal" but I am alive, I am married and I have a pretty great life when the disease is in remission. My ileostomy is permanent but if your doctor is suggesting you get a temporary stoma just to give your body a break and time to heal, my advice would be "go for it". I know that doesn't make your decision any easier but I just know that you will feel so much better when your body has the chance to rest and heal itself. Please keep us posted - we are all here to listen and help in any way we can. :ghug:
Hugs & prayers to you!

 

[CheerBear12]

I'm so sorry your having such a hard and are in pain and sick of being ill. I just want to hug you right now. It's safe to say nobody wants surgery. If your sick of being ill and in pain it will make you feel so much better. You will be shocked how good you feel once you have recovered. If I were you I would push for surgery asap. Mine was an emergency I didn't have a choice still don't like it but I'm feeling so much better and at least I'm still here. Good luck and keep us posted in what you choose. Big hugs hope you feel better soon. Your in my thoughts xx

 

[2thFairy]

I have/had ulcerative colitis and never had fistulas, so my experience is different than yours. However, I did have severe disease of the rectum and my life was absolute misery before the ileostomy. The pain was unbearable at times and trying to deal with bloody diarrhea on top of that, even several times in the night, became too much. The doctor recommended surgery after I went through all of the available meds. I resisted the idea initially, but did do a lot of research. As the months went on, I was ready for anything to just make it stop.

The first time I saw a picture of a stoma, it was such a shock to me. I made myself look at several photos of stomas before surgery so I could get used to the idea of having one. I also looked at a lot of YouTube videos that stoma patients made of themselves caring for their stomas. That helped me tremendously.

If you do have the surgery and it turns out that you hate having a temporary stoma, I would imagine the health you get back from it will be worth it to you.

This forum is a great place to get information about it. There are people with positive experiences and people with negative experiences, but everybody has good information to relay in either case.

 

[okhoney]

Wow. I am so thankful for everyone's kind responses. It is really helpful to hear from others who have been in a similar situation and understands what it's like to be in this position.

I went to the doctor yesterday and we talked about everything and I was able to voice some of my fears/concerns. He agreed that at this point if I don't stabilize or start to steadily improve that we are headed in the ileostomy direction. He did say however, that there are a few things that we can try still and that he doesn't think it's urgent that I make a decision right away. He stressed that it's a fluid decision for me right now and I have some time to think about it. For now, we are going to try a short course of antibiotics (I do terribly if I'm on them for more than 5 or so days, I get really bad diarrhea) to try and help out the fistula end of things in addition to looking in to maybe doubling the Humira dose (2 shots a week). He said that might be helpful enough to stabilize me and if it works we could perhaps do a course of antibiotics once a month or so.

He also said that there are still 2 meds I could try. One is not approved by the FDA yet, it's ustekinumab. And then there's also Tysabri, which I don't know if I am game for and he has reservations about it too (namely to start, there's an 8 week waiting period where you cannot be on any meds like Humira before you can start, not appealing when you're already sick to go totally off meds).

We also decided I can stop taking the methotrexate for now (yay!). Because I've been having issues with severe chronic mouth ulcers and it's been affecting my taste buds.

I feel a little bit better now because I think that there are some options (albeit very few). I asked a lot of questions about the ileostomy. He did say that there is a pretty good chance that a temporary ileostomy turns into a permanent one, which was a big fear of mine as well, so I feel like if I do get the surgery I have to go in with the mindset that it could be permanent; not an easy thing to swallow at 26!

Everyone's answers have helped tremendously. I haven't made up my mind yet, but I feel more hopeful. I do want to give a few more things a shot before I go under the knife. I feel like this disease is such a waiting game sometimes, so I guess I'll just have to see how everything goes.

 

[Terriernut]

I am very glad to hear you have a few more options available to you at this time. You will know when you're ready for surgery. I hope that it is a very long way off for you!
:rosette2:

 

[CheerBear12]

Its not an easy thing to swallow at 21 either especially when people say that this next one can cause infertility that's why I wish I had a diagnosis of uc or Crohns and not indeterminate colitis I'm glad they is still a few options about for you. Hope they work for you and keep us posted on your progress hope they get you sorted either way your in my thoughts xx

 

[Snoflayk505]

Have you considered trying diet to calm your crohn's? I suffered long and hard until I found the SCD diet. I am still learning about what my body likes and dislikes but I am typically symptom free if I stick to my safe foods. I have an illiostomy and absolutley love it. Not having to poop makes Crohn's way easier to deal with

Also, if you do go the surgery route, it is so easy to hide! I made a little girdle type thing and my husband has never even seen my ostomy or even bag lol He wants to but I say no hehe. I wear form fitting clothes and everything.

I hope you find something that works for you. Good luck

 

[Tay]

Greetings
I had a very similar clinical presentation as you. Diagnosed at 14 massive problems with peri disease for years - fistula's, abscesses, fissures, pain +++ etc. Put off having a stoma until I was 26 for obvious reasons. I am now 52. Post permanent ileostomy massively better, quality of life vastly improved. If you are worried about that stoma check out the Jessica Grossman site, very inspiring. Good luck.

 

[FruitLoop]

I had a temp emergency stoma in 2009 - it was so much better than i had imagined.

I had it reversed in 2010 but am waiting to have another one as life was so much better with the stoma.

Yes it takes a little while to adapt to but when you've been as ill as you have the relief is amazing.

To be honest i wish id never had mine reversed - it was mainly done as i had 2 fistulas next to it so they went in and removed the whole lot.

When my surgeon said a few weeks back i was going to have to have another one i was quite happy

 

[CheerBear12]

Awww good luck fruitloop hope it all goes well for you. You'll be in my thoughts big hugs That's why I wouldn't get a reversal I'd be scared if that happened. My surgeon it would be harder to make the stoma again coz it would be shorter. x

 

[Civey]

I have a ileostomy as well and like most people I wish that I had gotten it sooner. Also, I don't know if you are aware of this or not but, yogurt and beneficial bacteria really help with the d.

 

[CheerBear12]

I wish I had as well then it might have been able to be controlled by just the steriods:/ I love yogurt thanks for that xx

 

[CheerBear12]

Although we are not sure what mine is I'll still have yogurt xx

 

[SmoothyCrohns]

You could try FiberCon (over the counter) might help with the diarrhea, helps me. Start with half a pill so you dont become constipated.