The never ending story begins

[ChemGradStudent]

Hello all,

I am getting a bit depressed so I figured I should talk to some people on this forum.

I started Grad school a couple years ago and with it came a whole lot of stress. I started to periodically get these pulsating, on/off cramping pains in my general stomach area which are often accompanied by vomiting and diarrhea about two years ago. These seemed to always come around when I was the most stressed out so I shrugged them off as being indigestion and pushed through to continue my work. I noticed that these weren't going away so one time when the pain was especially bad and it had been going on for a week I decided to see a doctor. He told me I had a gratro. I knew that wasn't right because you don't get a gastro every month but I accepted it. This summer I started feeling even worse but the pain was different, I had severe fever and weird localized abdominal pain. The doctor thought I had appendicitis so I went to the hospital. It turns out I had abscesses around the terminal ileum. The doctors told me I may have Crohn's disease.

Long story short I went through a very painful drainage and got on a low fiber diet and entocort. Yesterday I got my first colonoscopy which confirmed I have Crohn's and that my ileum is very constricted. The G.I. said he couldn't even see how the food was getting through. So it seems the dreaded low fiber diet keeps going.

Anyways, I wanted to ask you some questions as well. I most likely will need surgery to cut our the part of the intestine which is too narrow. What should I expect about that, is it painful and what is the recovery time like? How long will it be until I can eat solids or even fibrous foods.

Secondly, do all you people remain on low-fiber diets all your lives? I find it extremely restricting. I went to a family BBQ the other day and there was literally not a single thing there that did not contain skins, seeds, onions or raw vegetables. I feel like there is nothing I can eat. Everything contains vegerables, seeds or peals!

Anyways, I will gladly accept whatever advice or anecdotes you guys have to offer me.

As for the title, this seems to be a never ending story, a series of gastros ended up being what they thought was appendicitis, then abscesses with Crohn's, I may also have fistulae, got a colonoscopy, I'll block it I eat fiber and will need surgery... Knowing my luck, the surgeons will forger some tools in my body and my polyps will end up being cancerous.

 

[Angrybird]

Hello and welcome to the forum, I ak glad you have decided to join.

Just to confirm has your GI said that surgery is required? Have they said whether the narrowing is down to scar tissue or inflammation? What meds are you on currently?

With regards to surgery I had a resection last year where a strictured part of the bowel was taken out, for me it was a lot easier than I thought it would be. The op was done via key hole so no big wounds to deal with and the pain was much more tolerable than the pain of living with the stricture. I was out of hospital after 4 days and back to work after 6 weeks. Initially I had to eat mushy foods like mash and was given a gentle laxative to make sure that no strain was put on the join inside. After that I was told I could eat foods thwt did not give me grief - sandwiches at last!!

Diet is a tricky area as some docs believe it helps and other's don't. I always say that if you are on a low fibre diet and this works for the tum then continue with it, if not there are other diets that can be tried that some folks here have found really helps. Some even go onto enteral nutrition as this can really help to calm the tum down and then when solids get re-introduced you are more easily able to pintpoint the problem foods. To get further info on this area do check out our diet and sups forum.

There is a lot of helpful info here so do have a good look around and pls keep us updated on how you are getting on.

AB
xx

 

[David]

Hi there and welcome

Angrybird above asks a good question. Have they tried to determine if you have narrowing due to inflammation or scarring? If it's scarring, then yes, surgery is the best bet. But if it's just inflammation, then medication and other treatments can help that significantly.

I also agree with AB above about enteral nutrition. I strongly suggest you research it.

As for additional surgery anecdotes, be sure to check out our surgery forum under the treatment section.

We're here for you!

 

[ChemGradStudent]

Thank you for your reply. I don't really know what the problem is, I haven't really met with the GI yet. I am still on entocord (budesonide) which is a corticosteroid for inducing remission but is not strictly a Crohn's medication. The GI told me I would eventually need surgery so there may be scarring, I don't know if medication can fix that.

I was more asking for how long after the surgery would I be on liquids only and how long is the recovery, i.e. until I can work or lift regular weights.

I guess if medication does remedy the problem I could eat a regular diet and not have to worry about a blockage.

 

[vanilla_chai]

oh the million dollar question "is it scarring or inflammation". My GI said "worst case would be to get surgery and have path come back showing all inflammation" but he also said you can't know 100% until they've sent the removed section to path, so they just do their best to figure out

here are a few of my threads detailing my surgery and the testing leading up to it,
Path towards Surgery

How long were you out of work after a laproscopic resectioning?


I went back to work absurdly quickly and wouldn't want to plan for that, but that's what worked for me.

As far as lifting weights, I hurt my abs several time over the course of healing and have tried to stick to running and some pilates in the 3 months post surgery. I think I could have eased back but I was trying to avoid injury and I tend to over do things... I did just lift and place into a shopping cart 2 (costco sized) cases of gatorade and hurt my large abdominal incision site so I'm still not at 100%, though I'm not sure if that is truly expected... that said, I'm a small woman so depending on your build this might not be as challenging. When the surgeon heard I was doing pushups 2 weeks out of surgery, he just paused and said "well, worse case is you give your self a hernia"

As far as stressing about never eating again, chances are very good you'll go through times where you can eat more and times where you can eat less. I know I had the same type of worries when I initially went gluten free "will I never eat a good pizza again?" and all sorts of gloom. 7 years into it I usually say "I can't eat gluten now but maybe someday". objectively, I will tell you I probably won't be able to, but I find its not really helpful to focus on the things I'll "never eat again" because who knows, maybe I will. I know this is a mind game but its one that helps me not feel so annoyed by it.

hope that helps. There are certainly other meds out there to try but I'm sure the GI will go into all that.

Good luck!

ps, I now have that song in my head

 

[Keepingfaith]

Welcome to the forum! Sorry all the stress seemingly brought on Crohn's :stinks: Stress is a HUGE no-no for me. It always makes me sicker. You just have to learn how to find the right balance of stress. It's best to get the disease under control now rather than try to battle it through grad school. It'll just make your recovery time longer.


I'm on a low fiber diet & I find their are TONS of things I CAN eat that are good! My dad always cooks my meals seperately at family parties, cookouts, BBQ's etc. He makes me shrimp/grilled chicken/pasta/Crohn's friendly dessert/Garlic bread etc. A lot of carbs are very low in fiber. Also, I live off shakes/smoothies. Try blending your fruits/veggies(ask GI first)if you miss them that much. It has all the fiber but not the bulk that your GI doesn't want you to eat. If you do decide to eat some veggies, try squash and cook it till its mush. Also, drink A LOT of water with your meals to help keep things 'flowing'. Low fiber isn't the end of the world. It's not hard to follow. Just look at labels.

As far as surgery, everyone is different. My friend who recently had the same surgery your on was on a liquid diet for 1 week before surgery and 1 week after. She said she missed the food but it's worth it. Then she was on a low fiber diet for about a month afterwards. Now she eats whatever she wants. You'd be amazed to find out how much tastey foods are liquids. : Tomato soup, milkshakes, icecream, broth, popsicles, jello etc. I rotate on & off liquid diets quite frequently and have no issues with it.

Entocort isn't much of a steroid. It's hardly absorbed by the body but is used for people with TI involvement. It's about 9mg(at the highest dose) & that compared to a standard Prednisone dose(40mg) isn't much at all. Typical entocort dose is 9mg for 3 months, 6mg for 3 months and 3 mg for 2-3 months until you are completely off it. The entocort could induce remission but I doubt it. When your GI removes the diseased portion of your intestines you will be in remission and you'll need to be on a maintenance med. Entocort isn't a maintenance medication.

 

[vanilla_chai]

oh, I also wanted to add a few of my food strategies since I often can't eat where I'm going

1. I pre-eat. Not enough that I'm stuffed, but enough that if I get there and there isn't anything that works I'm not miserable. I find watching people eat while I'm starving is torturous.

2. I carry emergency food. My emergency foods won't help much other than ensure and juices but as you adapt, try to find things, even if its just crackers, that you can stash places or grab while headed out the door. I use to buy milk in juice box style cartons that didn't need cooled, push comes to shove, a chocolate milk and crackers is something

3. if its an event where its not out of the question to bring something, I usually try to contribute a side dish which can serve as a main dish for myself and make sure I load up before everyone gets to it.

4. for big celebrations such as thanksgiving, I usually coordinate ahead of time to figure out what I can eat and what I'll want to bring just for myself. In that situation I typically bring replacements rather than just 1 dish to share. There are just sometimes you want to participate in the feast, even if it means bringing it all

 

[ChemGradStudent]

Thank you VC. I have been finding it very annoying, especially since I don't want to inform some of my family like my grand parents so they don't worry. But, of course, I can't really eat at their house since if they prepare a salad dinner than I'm in an awkward situation where I can't eat anything. I have to either seem antisocial or add another worry to my grandmother's mind.

Also, I haven't drunk any alcohol since I left the hospital 3 months ago and could easily do that for the rest of my life (I was never much of a drinker); I was wondering if you guys ever drink or if it's not recommended?

Lastly, if you were in my position and the GI told you you would need surgery, and could either do it now or wait until it became a problem what would be wiser? I guess an earlier remission could be good however surgery does have it's risks and unnecessary treatment is always controversial.

 

[Ckt]

Hi there and welcome to the forum! I'm kinda new here myself but have had several resections and abdominal surgeries that they are pretty sure have all stemmed from crohns disease. There sr so many innovative surgery methods now such as laparoscopic surgery and robot assisted laparoscopic surgeries too that minimize the amount that your bowel is handled which theoretically cuts down on adhesions forming..another post op complication that can cause bowel obstructions. So it's really wise that you're doing some research and asking around here.
I didn't really have the choice of Laproscopic surgery once I had my first two bowel resections. That's because my bowel could have been perforated as the more surgeries you have, the more adhesions(scar tissue outside the bowel), and it can get stuck on the abdominal wall..soo.. It's good to try and do the first through a scope. It cuts down on post op pain and recovery time too.
I have been on and off most meds going. Including entocort which was great in that it doesn't cause as many systemic side effects like prednisone, not so great as it hardly helps with inflammation. I usually go into hospital for a few days during nasty flares and get Iv steroids then my gi puts me on entocort..prednisone makes me crazy crazy! It's pretty awful for me.
Ive also been on and off various diets including low fiber, no gluten, elemental(liquid)..you name it, I've tried it! It's a love hate relationship I have with food now..love the taste hate the inevitable pain that follows. And I love love veggies!in all shapes and sizes and any way you cook them or not..I just have always loved them since I was little!
Sometimes I just figure the pain is worth it..other times it's just not. Tonight I ate green beans because I love them!ill probably be up all night on the toilet but it is what it is!
I am now 51 and am experiencing the lovely symtpoms running up to a complete bowel obstruction. Believe me..this isn't my first rodeo with it. So I'm going to an IBD clinic to basically beg for an ostomy. Yes..it's extreme but so is staying home near a toilet all the time..all.the.time!
Even if this isn't a stricture or inflammation for me, I figure it's all semantics at this point if my life is what it is.
If you are having that much pain with food, do try the liquid route. I have also been doing some juicing which has been good when no veg is in my near future.at this point my family and friends kind of seem a bit..nonchalant about it all. I guess unless I bust a gut(and I've done that too) nothing is too exciting anymore!sometimes I feel like a freak of nature to be honest! I'm the only family member with IBD and if there's a weak gene in the lot I seem to get it!!LOL!keep that sense of humor!even if it's macabre! I mean..sometimes it borders on the ridiculous!
Pm me anytime if you have questions or want to talk!

 

[vanilla_chai]

Yeah, grandparents can be tricky. With random people at work or at social events I often am vague and just kinda mock myself saying I'm a picky eater or I've been too stressed out and loose my appetite. I typically do this with people who aren't likely to ask more questions but grandparents can be a whole different game. I do remember trying to reassure my grandmom about 3 days before she died that an upper endoscopy wasn't anything to worry about bc I'd had one. It totally backfired and she was then worried about me.

I guess you could "take up hobby" like baking bread and use that as an excuse to bring something with you to dinners but that could get overly complicated

I occasionally drink (occasionally to the point that most drs call me a non-drinker) but much of that is habit/ having no tolerance and needing to drive. I think prednisone and remicade both go through my liver and I already have cysts on it so its probably best this way but I've never been told I can't drink

as far as waiting or not for surgery... I personally pushed ahead with the surgery bc I'm 35 and looking to try to have a family and was worried about getting a blockage while pregnant. Without that time issue I probably would have waited a bit longer to see if/when I ended up in the hospital with another blockage.

the negative of waiting that I see is that I was to the point were I wasn't keen on travel and every time I made work plans, in the back of my head I was thinking "I hope I am healthy enough to do this". It was definitely hanging over my head. I'm a planner and HATED ending up in the hospital for 5 days unexpectedly...

the argument for waiting is that while you're removing scarred tissue, you're not removing the disease with Crohn's. Typically it comes back (though you see people with some really long remissions) in the same area on previously unaffected tissue. From my understanding, before surgery any inflammation was happening on already trashed tissue, it was kinda like a chew toy for a dog (or letting the dog chew the rug he's already destroyed). Now that its out if/when the inflammation starts up again, new tissue will be harmed, kinda like the dog is now chewing on the new rug...

so, basically I'm ambivalent on this one. As far as short term life impact, surgery was the way to go. As far as disease progression, I would always have it in the back of my head the concern that doing surgery sooner rather than later could leave me with less bowel or more scarring/adhesions that could cause me grief down the line (assuming I'd had to have more surgeries).

Above all though, you'll want to go through whatever tests they can do to see if its inflammation. Once you're pretty sure its scar tissue, then it comes down to weighing the classic risk/reward

Anyway, I don't know if that helps... just my train of thought

 

[EthanPSU]

Hey, I don't have experience with surgery so wont be able to give any advice on that aspect. Just wanted to say hey and welcome. Much respect for being a Chem grad student, I took chem in college and had to drop 101 and then when I took it again I barely passed, ha it was not my subject.