Hey everyone. I'm at a crossroads. My big issue right now is just exhaustion but over the years I've gotten these pains and they're just getting worse each time. This last time they didn't go away and I went to the ER and they admitted me for 5 days for a (partial?) blockage. This was the week after remicade, not cool. I'm nearly 35 and I'd like to have a kid but am not in terrific shape. While I was in the hospital, one of the on call drs from the gi practice I was with suggested I go to a IBD specific GI that he knew. It took 3 weeks, but I finally had my apt with him yesterday. The 2 options he suggested were trying 10 mg/kg (I was at 5) for 2 doses and if I had any symptoms, to look at surgery, or the second option was just start looking at surgery. He said his concern is there is probably a decent amount of scar tissue. My instinct is that is the case, mostly bc it just keeps getting worse. I'm normally a very conservative person w medicine but I'm much more interested in what is the best chance in terms of having a healthy pregnancy.
My current thought right now is to go down the surgery route bc I'm afraid that if we do the medicine route and even if it appears that I'm doing ok and I get pregnant that I'll end up with a blockage while pregnant anyway. Best case scenario, I'd be on TPN which is bad enough but abdominal surgery while pregnant terrifies me. Especially since I've had blockage pain happen with no warning. Also, the GI thought there was a good chance I'd miscarried this past summer bc of the Crohn's and I'd rather not go through that again....
sooo, it scares the crap out of me but I guess I'm leaning towards surgery.
anyone have any thoughts or advice? (and if it matters, the surgeon does laproscopic resectioning)
thanks Hannah, that really helps knowing everything you've gone through. My biggest hesitation/pause/worry at this point is having to deal with diarrhea afterwards. I know its stupid, I have crohn's what do I expect? and the constipation is no picnic either. I guess my plan at this point is to say to the dr that if the test look like it inevitable that I'll need surgery then lets just do it. It'll be a hard call if it comes back unclear, but I guess I'll deal with that then.
I am scheduled to get the higher dose on tuesday just to try to keep me going until we do something. He did say sometimes he'll let people go w/o meds after surgery and scope them freq to watch for biopsy indications of disease return but my hands have been getting stiff and he's concerned that if I did that my joints could get worse I would love to not dose a baby but as he says, there's no indication they are harmed...
I was on the highest allowable dose of Remicade for my body weight for like two years with no results. I know it's a lot different for some people, but I'd hate for you to wait and wait and it not help you. And no, everything I've read said that it doesn't harm the baby, it just raises your risk for miscarriage.
And if it's just a resection, there may not be too much change in your bowel habits. It's more likely that it'll be looser since the scar tissue causing the blockage will be gone, but there's a good chance that you won't have diarrhea, and if you do, that it's manageable with medication or diet. I live off Imodium right now.
I'm not trying to sway you one way or the other, just letting you know what my experience with it has been.
Yeah, the Dr was only going to wait 4 or 5 months for the remicade to do anything (basically 2 dose cycles) and if that didn't do it, then I'd have to wait the 5-6 months more to do the surgery and recovery before trying. That would put me right before my 36th bday...
I'm getting the highest dose on tuesday but my concerns still exist that I felt great right before the symptoms started in 2010, so what is the say I couldn't feel good now and still have problems.
I was actually just emailing the Dr so I really appreciate the feedback. I basically said that if the scans look like there is a good chance I'll need surgery at some point, lets just do it. it scares me but I think its probably the best bet at this point
I think the fear with the diarrhea is just the unknown but I'm sure I'll adapt what ever happens. I've certainly adapted to plenty over the years.
thanks again for writing, it really helps me come to peace with a decision to just talk it out with people
I would have the surgery. If I had known that all of the meds I had taken were gonna do me absolutely no good, I would have had my proctocolectomy in that first year! I know that the docs try and try to save as much of your intestines as they can, especially when you are so young, but sometimes it is the only thing that gives you any relief.
I wish you the best of luck! Please keep us posted!
Hey Mindy, great to hear from you. I certainly will keep everyone posted. I'm excited about this new Dr and everyone at the office, I hadn't been thrilled with the GI I was seeing previously. Who knows, maybe it'll even make the 5 days in the hospital worth it (since that's what got me the referral )
hi oy, sorry you are going through this but glad you havea doctor you like now. as Ive mentione, I had a resection when I was 14 weeks pregnant. I had a full obstruction at 13 weeks and was septic. CTs are out when preggo and the first mri didnt show it. abdominal surgery is quite scary pregnant. I was high risk and bedrest after that. I didnt react well to morphine so I recovered with nothing. It was horrible. Since I had the resection I have constant diarrhea. I take immodium daily and stil have it. I cant eat fruits, veggies, whole grain or basically anything healthy, lol. My obstruction was from scar tissue from my csection. My son is going to be 5 in june and Ive basically accepted that this will be the rest of my life. I have many
not sure how it posted, I was still typing. sorry..
I will say, recovery is harder pregnant and basically, my body couldnt heal because it was trying to take care of the baby. Im SO lucky that my son is perfect in every way I remember the worry when they couldnt locate body parts or heartbeat on u/s because of the healing and swelling. If they think surgery is warranted in teh future, I would really recommend doing it under the most optimal circumstances. Best of luck and hope you feel better.
oh wow Jodi, I'm so sorry you had to go through that. When I was in the hospital I kept thinking "I could have been 7 months pregnant" and it scared the crap out of me, so I was already thinking surgery, and about 1/2 the doc then suggested it (the others said "don't get surgery" - nice to have a consensus )
I do feel pretty good that both the GI and surgeon will check everything they can before going ahead which makes me feel so much better.
I am scared of the diarrhea but I try to keep reminding myself that I'm living on whey shakes and chicken w rice or pasta so its not like things are terrific now
thank you so much for sharing your story, I'm so glad both you and your son are ok!
Hannah, my diarrhea is MUCH better then it was. With immodium I go about 6x a day. If I dont take 2 I go much much more. I also have reflux, chronic gastritis, b12 deficiency and anemia since the surgery. I had none of them prior. Up until about 2 yrs ago I had constant pain and ws taking about 6 immodium a day to get through. I eat low fiber, no fried, limited dairy, pretty boring actually. I am so grateful that it is as controlled as it is. I get nausous when I have to go now nad the reflux is worse when I take the immodium. At this point I am glad Im doing pretty good - I barely functioned for a while.
hope you are feeling well and nursing school is going good.
That sounds about like mine, but I have no colon whatsoever. How much did they remove with your surgery? And also, now that I've healed from surgery, I find that eating high fiber foods sometimes helps with it. I have to be careful what I eat because there are still some things that are too rough (I can't eat shredded wheat, for example) but I add Benefiber to coffee or tea when I drink it and sometimes other things, and I've also found Metamucil fiber wafers to be somewhat helpful at times.
Nursing school is going well, thank you. Still not doing real great with my health, but I'm hanging in there so far.
Be careful with the Imodium Jodi. I'm cursed with diarrhea and have tried Imodium to help get me through the misery. I might be able to possibly blame it for getting dehydrated 3 times already. The rest of the blame goes to my J Pouch surgery. I remember the last time I was dehydrated one of the questions they asked me in the emergency room is if I used Imodium. And I did remember using it that hot Summer day. Since then I've quit using it and haven't had any dehydration attacks. After all the misery I went through while dehydrated I don't want it to happen again.
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