Failing Stelara, Opting for Ileostomy

Hey all (especially UBT, CLO, TAM and NCOT)
I've had a thread on the UC board chronicalling the wicked flare (complete with perianal fistula) that I have been in since Jan. '17 (which changed my dx from UC to Crohn's Colitis).
I'm steroid-dependent (currently stuck at 20mg and things are getting worse again) and resistant to biologics (failed Remicade, Humira, and now Stelara) as apparently my body metabolizes them quickly and they cannot build up/stay at theraputic levels (no antibodies, just special).
I was better but currently 7+ bloody BM's per day, explosive D, very little formed, straining--I can feel my fistula broke open after it had healed--cramping, fatigued, in pain and not able to live the life I want. Icm athletic and I want to have another baby soon because I'm nearly 38yo.

So I've decided to abandon drug therapy and get the ileostomy. It was a bitter pill to swallow, having had relatively "quiet" UC for 13 years and always banking on the j-pouch being my "get out of jail free" card if worse came to worse... I didn't actually know how bad it could get until this flare brought me to my knees.

So I'm asking for any suggestions about pre/post surgery (I mean ANY suggestions about things that made you more comfortable/worked well for you). I will be traveling 2hrs to the hospital and my intention is for my husband and our toddler to stay nearby until I'm released--maybe a week? I'm a stay at home mom of a toddler and I don't have any family nearby or people I'm truly comfortable asking for help. I do a lot of driving because we live 30-40min from most stores and activities. My husband has a demanding job but will take off as I need him to--I was thinking he might need to take off 2 weeks? What supplies do you like best (I am sensitive to adhesives)? For working out? Anyone been pregnant with an ostomy? TIA

NiceCupOfTea said...
Hi Plucky. I have a feeling your headline will be my one in 1-2 years' time :-/

Is there a stoma nurse at your hospital? I hope so, 'cos mine (there were two of them) were very helpful. One of them measured me up for a stoma a few days before the operation and drew a large black circle where the stoma would go. This step is really important, particularly for a stoma that's going to be permanent: you want the stoma to fit in as much as possible with your clothing and your body shape (it shouldn't be on or next to any creases). I also got to speak to a woman who had a stoma and ask her questions.

You probably will be in hospital for about a week - 4-5 days minimum, but probably more like a week. I had no complications and I was still in for a week. You won't be able to drive for 4 weeks afterwards (I was super paranoid about a hernia and gave it 8 weeks, but in retrospect I don't think that was necessary). I stocked up on food beforehand and froze enough meals to last for 2 weeks. You can also get online groceries delivered. Buying stuff shouldn't be a problem, it's going to places that's difficult without a car. What about taxis or buses?

For supplies, my stoma nurse gave me some decent advice. She said in the beginning just stick with the first thing that works. There's enough of a learning curve with having a stoma and emptying/changing the bag, without trying to learn about all the different brands and accessories. Plus on top of that the stoma will change its shape/size over the next few months (it usually shrinks). For me I was getting stressed out with all the choices on offer and that was good advice. The only accessory I found essential were seals - rubber rings which sit around the stoma (Eakins is a popular brand of seal). Had to use those, otherwise the skin around my stoma would quickly become a macerated mess. At around the 6-month mark I wanted to try experimenting with different bags again, and it was definitely much easier by that point.

For the surgery itself, make sure your surgeon is aware of the importance of creating a decent spout - the ileostomy should stick out by an inch to an inch and a half. 'Flush' (i.e. level with the skin) stomas are a nightmare to deal with; they are far more likely to leak and it's far harder to stop them from leaking.

I think that's about everything. I'm sure other people will have more to offer, but I personally can't think of anything else right now. Have you booked a date for surgery yet? I will be wishing you the best of luck. For me an ileostomy was the closest thing to being free of Crohn's I've ever had with this disease.

Just thought of one more thing. Are you gonna have a total proctocolectomy? That is, colon and rectum removed? I strongly advise it, as just leaving a diseased rectum sitting there isn't a great idea really. In the long term it's a cancer risk. And in the short term you'll likely still be passing mucus and blood and suffering from tenesmus.

NCOT,
So good to hear from you! How are you doing? I haven't been on the boards much lately as I have been so busy getting ready to move--the stress of which has worsened my flare and now as of today I have the flu--just shoot me and put me out of my misery! Thats a joke but on a serious note, I wish I could just take some strong pain meds and sleep all day--impossible with a toddler.

The surgeon won't do the protocolectomy with the first surgery, it must be a 2nd surgery and I need to wean from the prednisone and stelara first. There is a teeny tiny chance that they will offer me a j-pouch, but I don't intend to consider it unless I have issues with the ileostomy.

Thank you for all your helpful suggestions! I'll be writing these down to discuss at my appointments next Monday.

U B Tough said...
Dear Plucky,

You brave woman. I admire you. I just can't get there.....yet even though I'm still abscessing blah, blah blah.

Stelara is really helping me. Not perfect but my bm's are formed...1-4 day. Still urgency. My GI wants me to be on it for at least 6 months to see if it will heal the fistulas. I just had my 3rd dose 10 days ago. And I came down with a virus immediately following. I'm trying to have some sort of life and am doing well at that. Yesterday I took a ferry to an island and spent the day at the beach!! Even public transit home. I did take an immodium because of the urgency and not have near by access to a clean bathroom but I'm fine with that. Today I'm so run down and in tears. I knew that would happen. Plus the butt pressure pain is building again.....I'm fearful of my next abscess/surgery and pain.

Would you consider a diversion?

I have 2 upcoming CRS appointments in October with 2 different CRS from the one I've seen over the last year. I'm hoping they'll do a LIFT to fix the fistulas and then maybe, just maybe I'll have some respite. My GI has also made a referral to the Mayo but thats a long shot from a financial perspective. Failing that my GI will try me on MAP drugs.....then if I can get psychologically strong enough maybe a diversion. My tiny support system is burnt out and I really don't think I could handle it. Perhaps you'll provide me with the example I need. My 81 year old mom has one and it's frankly heartbreaking...she's struggling so much that I think it's very hard for her to say I should follow suit and do it.

UBT,
Brave yes, but no braver than you or any of our other cohorts--I get why you're looking for options because surgery is a mixed bag and there's no guarantee it will heal your fistulas, which are your biggest issue. I'm so glad Stelara is working for you! I'm so glad you are getting out more and enjoying some freedom.

I'm just ready for the next chapter and I feel like it's my fate to have an ostomy--so be it--I want to embrace a new way of life rather than be stuck in this flare any longer. Plus I have responded *instantly* to every biologic, but they wear off because I metabolize them too quickly so it seems pretty pointless to prolong the inevitable by toying with other drugs.

I'm in bad shape right now due to having the flu so I called IBD Specialist and she said "Go to the ER" but I feel the same way you do--only if I have LOTS of time to waste and desperately need fluids and pain meds. I'm not quite there yet, but I'm getting close. My Stelara isn't due for another month (they cant/wont do it sooner than 8 weeks) and the only other thing they could do to stabilize me is up my prednisone dose, which they won't, because they want me on the lowest dose possible prior to surgery. So what I anticipate on Monday is that IBD Specialist and the CRS will want me to have surgery asap. I had intended to push it out to the beginning of November but I can't go on like this. Scared I will abscess again as my fistula has broken open from all the straining these past few days, and my thrombosed hemorrhoids are resurrecting themselves. Oh h-e-l-l no! I want none of that. Good riddance to all of it.

I had my ileo a little over a year ago, and I was in the hospital for four days. Sadly, my planned laparascopic surgery was converted to open, so i ended up with more inches of incision than otherwise. I was fortunate to have family on hand to help for a few weeks but I found the general recovery not too be too horrible (or maybe it's like childbirth and your forget somewhat), but I did struggle with having a fairly flat/flush stoma.

I agree that a solid ostomy nurse is key, and I had a home healthcare option, as well as ability to go visit nurses at the hospital I had my surgery at. It took lots of trial and error with appliances but we ultimately found a system that worked for me and, over time, my stoma became more prominent (at least enough not to be an issue...although I still like the security of wearing a belt with mine).

I do recall not having much of an appetite, so I highly recommend the pre-mixed Muscle Milk shakes to ensure you are getting protein and vitamins (vanilla is pretty good). For a long time I was eating a pretty bland/white diet (white bread, pasta, cheese, yogurt, etc.), but you'll get more confident with food choices. I still have to be careful with most veggies and fruits, but I have gotten to where I can indulge on my favorite kale and wild rice salad (just have learned how my body processes it and to do so when I can keep a more active eye on things so I don't pancake or develop a leak).

And, if you haven't heard it already, the marshmallow trick is the best for changing your bag. I usually do first thing in am and have 4-6 marshmallows, wait 30ish minutes, shower and I'm in the clear for a mess-free change.

Too much to share...but best of luck to you! And feel free to ask away!

Plucky,

So sorry you are going thru this. You have the right attitude. If you need to do this move forward with a positive attitude. It will make a huge difference. Part of that is knowing that this is what you need and just going for it. There aren't any guarantees but I think that many of the people who have ostomies report a higher quality of life.

My first question to my CRS would be-- Since my diagnosis was changed to Crohns should we be doing a resection, colostomy, or ileostomy? What is your reasoning? What studies should I look at? Then I would do some serious research. Think laparoscopic but plan for open.

Visit the ostomy nurse at the hospital, have her mark where it will be and try wearing bags/clothes with where she marked. We did this in hospital and it really helped. That quarter inch can make a tremendous difference in comfort and bag adherence. ( if it gets caught up in your clothes.)

I have an end colostomy. They left part of my sigmoid and rectum. Theoretically I can be hooked back up. We did the colostomy because (1) there was a stricture. (2) with a diagnosis of Crohns my CRS wanted to save as much as possible. If I had been diagnosed with UC we would have gone with an ileostomy....however if there is any doubt he goes with the colostomy. If I didn't have a huge RVF and issues with fistulizing we would have gone with a resection.

Now with a toddler and upcoming surgery....I wish you lived close by so I could come help....there are lots of things to prepare.

Fix foods that do not cause you issues and freeze in individual containers. Buy those weird foods that you can eat and crave while in a flare ( mine were Cheetos and Bridgeport beef jerky) and keep them just in case. Also purchase purple grape juice ( used to thin your output) and those other foods that currently cause you to have D and have them for when you come home. For thickening buy peanut butter, pretzels, marshmallows. Whenever you thin or thicken your output in the beginning use just a little and see what happens. I used grape juice...4 ounces...waited an hour did another 2 ounces and then some water. Do not chug a whole thing of grape juice!! It causes dark purple frequent output and then you are trying to get more liquids back in. Do not eat a bunch of marshmallows...do one or two and see how it goes. Absolutely stay away from gummie bears and pizza dough. These can all obstruct you. These are all personal observations that all scared 10 years off my life.

Buy at least 1 bed protector/mattress cover. Make sure to ask the hospital for those little protectors you lay on. You can also buy them at Wal-Mart...but my hospital gave me about 15. That way while you are getting used to your ostomy..if there is an accident it is easy to clean. And they work when you are sitting in a chair or a sofa. Also have a second set of sheets, blankets and comforter for your bed....just in case...and have it sitting in your closet or close at hand. (I only had to change everything once..those little hospital protectors saved me.)

Make an organized, designated area in the bathroom for your supplies. Make sure you have a full length mirror to look into to change your bag. If your vanity mirror is low enough and you are tall enough you won't need the full length mirror. ..just so you can clearly see where your stoma is... I have two cheap rubber backed rugs that I put down when Freddie gets a naked shower or for when I am changing him. My friend just lays down a couple of towels. I also have a cheap 3 drawer roll bin that I put my supplies in and a little plastic 3 or 4 drawer plastic organizer. Walmart...20. And 6. It fits in my bathroom closet when I want to hide it.

Part 2 will be posted later.

Clo

Our stories sound similar. I was UC scheduled for jpouch surgery, surgery canceled and officially Crohns Colitis. My disease was always in the colon and rectum, only figured out Crohns because of pathology and developed and RV fistula.

If the diagnosis is Crohns Colitis and your disease always behaved like UC and remained in the colon I think you are on the right track with the ileostomy. I first had a resection with temporary ostomy. Wrong decision. And with Crohns Colitis I would not want a colostomy.

Your recovery will definitely be easier just doing the colectomy and not the proctocolectomy. My first surgery with resection and temp ostomy was a much better recovery. Hospital 4 days and could drive within a couple weeks. The rectum removal definitely extends recovery, and length before driving. I think most surgeons prefer doing it in 2 surgeries. Mine would not because of my 2 previous surgeries so close and my surgeon didn't want to have to operate a 4th time.

The tips to have prepared food ready is really helped me. I made a big batch of my favorite Mac n cheese and froze it in individual portions. Came in so handy! Especially once my husband went back to work and I was on my own for lunch.

The marshmallow or gelatins trick is good too. I still use it. Similar to DCcrohns I eat some jumbo puffs or drink gelatin, then hop in the shower and when I get out my stoma is quiet and very easy to change.

There is a blogger (2 actually) that were both pregnant with an ostomy. The Stolen Colon had a lot of good info for me especially about dressing. It helped me a lot to see someone of similar age wearing clothes and bathing suits with the ostomy.

It is a hard decision but sounds like you have a good plan.

Opting for an ileostomy was the best decision I ever made since becoming sick.

I wish you good luck with the ileostomy. It will feel like a life-saver after the pain i'm sure you have been in daily. I had an emergency temporary (ha) ileostomy in November due to a fistula. It was a life-saver but it hasn't been fun. I am not responding to Remicade so my temporary ileostomy is not going to be reversed anytime soon.
They caution on lifting more than 10 lbs for 4 weeks after surgery. I didn't follow that advice as I too have a small child. My ileostomy is now slightly herniated. I recommend researching products for your ileostomy prior to your surgery. i wasn't able to do that and finding products that work for me has been a constant issue. My inflammation has continued and I now have another fistula so I'm not sure what the future brings to me, but, I wish you the best.

Spammer alert, mods.

That's exciting, sounds like you are ready!

I wear the Coloplast Mio. It s by far my favorite of all the appliances I tried!

Good luck with surgery and recovery!

cupcakespinkgal said...
That's exciting, sounds like you are ready!

I wear the Coloplast Mio. It s by far my favorite of all the appliances I tried!

Good luck with surgery and recovery!

Thanks CPG! I'm excited and nervous--still have moments of "OMG maybe I need to re-think this" because my freaking colon has switched from lots of blood/very little stool, to lots of stool (semi-formed) and very little blood. My colon is such an a-hole!

clo2014 said...
Plucky,

I am being nosey.......what did they decide? Is it an end with the possibility of being either temporary or permanent?

I am so glad that your nurse marked you and you are trying it with your clothes and seeing how everything works. My nurse initially started to put mine a little far over on my left side. We had to move it. I am a side sleeper and was afraid that I would not be able to just sleep on my back....and I was right. I still flip over to my left side but thankfully it is just high enough that I don't squish it!

I love coloplast. I use a two piece system. I still pancake so I do things they (coloplast) will tell you not to do. I keep a little bottle of water by the toilet and when I empty my bag I swish it out. Drove my coloplast advisor nuts but I just can not not swish. I don't fill the bag up with water I just swish the bottom part. And they make these little tape strips...the strips help.hold the edges down on your bag. Most people don't need them but I....well I am just tall enough that I am constantly rubbing the edges of my bag loose....or maybe it happens because of all that swishing. ...hmmmmmm....

I hope your Mom is coming to help you. Sorry...but being a Mom...I always think that they should be there to baby their kids...even when they are adults. I can't help myself. This is worse than the swishing stuff....and I really can't help myself with my daughter..... I know it must drive her nuts....lol....

Oh...and finally.....not to freak you out but just so you will be prepared. about one or two weeks after surgery I got the sensation I had to go to the bathroom the old way. Eventually I went and sat on the toilet and...well....apparently your rectum and any remaining colon still makes mucus...and every so often it will make you feel like you have to go...and when you do.....that mucus will come out. For me it happens once every two weeks. They told me about it.....but I didn't really understand it until it happened... AND...with my colostomy....if my stoma has anything stuck to it....it won't work. It cramps but won't let anything come out until I clean it off..... Its OCD and a clean freak!!

I am thinking of you and sending lots of healing thoughts your way..... Take care of yourself.

Clo

Clo,
Sadly, my mother passed away in 2009 of breast/lung cancer. My younger sister is well-intentioned but a complete flake (and not domestic at all--she lives off taco bell and spends all her money on clothes). Plus she lives 10 hours drive away.
So no, I don't have anyone helping me besides my husband--he and our toddler will stay in a nearby hotel while I am in the hospital (and we have memberships to the zoo/aquarium/insectarium in NOLA so they can go do fun stuff) and he's off work until 2 weeks post-op. By then I hope to be on minimal pain meds and driving--I can't wait 4-6 weeks to drive! I would Lose. My. Mind. Being cooped up with toddler that long. CRS said I can drive when I'm feeling up to it (not loopy on pain meds).
I'd imagine your recovery was a lot tougher because your surgery was so dramatic (you were septic and almost died, right?)
You're not nosey! The plan is a total colectomy with end ileostomy. I want to try to have another baby, then I *think* I will have a second surgery to remove the rectum (um, a protectomy?). The j-pouch might be an option but I don't think I want to risk more disease/fistulas/fissures/hemorrhoids, etc.
I don't know the terms--what is "pancaking"? What is "swishing" and why do you do it/not supposed to do it?

And then, who pays for all the supplies??? I assume insurance pays for bags and such, but that I can use my HSA for belts and other accessories?

Good luck with the surgery, Plucky. I hope it all goes well!

Pancaking only happens with thick output. I got it occasionally, but it was rarely a problem like clo said. It may possibly be more of an issue if you sleep on your back, but as I've always been a stomach/side sleeper I never had to worry about that.

As for rinsing the bag out I never saw the point - you're only gonna get more output in it again in a short while :/ I just concentrated on making sure the tab was clean (the velcro bit which opens/closes the bag).

You should get the rectum removed at some point. If it just sat there gathering dust it wouldn't be so bad, but sadly it's still susceptible to IBD - and diversion colitis as well (the latter is caused by lack of stool passing through it; apparently the colon cells don't like being deprived of 'food'/energy that they can only get from faeces).

I love your attitude Plucky! It sounds like you have a very supportive hubby. I do wish I lived closer to help out as well. The idea of holding a toddler sounds heavenly to me!

I can't believe how fast your surgery is scheduled. I'd have to wait a minimum of 6 weeks before a date. Will you still be on Stelara?

A suggestion: try wearing the bag now with seatbelt to make sure it's in the right spot.

Thinking of you often!